In life there are so few truly remarkable, truly incredible days. For me - today marks one of those days. Today is Conner's 4th birthday. Sometimes it seems so surreal - I can picture all these brief moments in my mind - like my boys sharing bunkbeds or running in the sand. I miss him so very badly. Most days I do okay - but today I feel very broken. Broken-hearted, sad - and lost. Giving birth to Conner was literally one of the very best days of my life - since I have done it 3 times - I can confidently say that it was truly remarkable. I thank Conner for so much - for making me who I am - for helping me grow and mature and for giving me the strength to continue without him. I am sad that Brenden only had 22 months with his baby brother and i am sad that Avery will only know him through our memories. For Conner's 4 th birthday we will be making a donation to Soulumination - a charity that is very very special to us. Happy birthday my amazing baby boy!

I cannot believe that I have been missing Conner for 2 years now. Seems so unreal. My complete love for him has not changed - and I sometimes feel lost without him. Today is the two year annivasary of him leaving us - a day that I hate to remember. We all miss him so terribly!!!

Today I received an official proclamation declaring October 2008 as Tay-Sachs awareness month in Maryland! This is truly incredible since Maryland is the very first state to have done this twice. The first ever official state Tay-Sachs awareness month was here - if you remember. September 2006 was Conner's Way Tay-Sachs awareness month in Maryland - again thanks to the amazing support we received from Governor Ehrlich. Since our initial proclamation - several states have dedicated months to Tay-Sachs awareness - and September 2008 is National Tay-Sachs awareness month! How incredible :)

It's just a few hours before the 3 year annivsary of the day that changed our lives forever. We have already been reliving that day the entire week. Avery had her eye appointment this past monday with the same doctor that diagnosed Conner 3 years ago. I though back as to how I walked into that office so unknowingly, so unsuspecting - and left completly discheveled and stunned. I wish i could accuratly describe what that day was like - but words can never do it justice. I know all the other Tay-Sachs families know exactly what Im talking about. It's literally like watching a glass break in slow motion that you cant quite grab in time even though you tried. Only the glass is your life that is slowly shattering into a thousand tiny pieces. We have come so far in the past 3 years, but never for one second does Conner leave my mind or my heart. I never imagined that our lives wouldve taken this twist - it's not at all how i envisioned our lives to be. We have faced such tradgety - and yet been so blessed. As i sit and reflect over that September day, I have a new little life beside me - one who surely wouldve never been had Conner not died. i am so grateful for Avery, Conner and Brenden. I am so thankful to have been given the chance to become a mother again. My son, though not here on earth is always with me - in everything I do!

http://averynessa.blogspot.com/

So many of you know that little miss Avery suprised us all and came 6 1/2 weeks early. She gave us quite a scare in the first 5 days of her life. She spent 10 days in the NICU and is home now doing well. Her name is Avery Nessa - she was born 8/19/08 and weighed 4 pounds 13.4 ounces. The meaning of her middle name is very special to us - Nessa means miracle child - and thats exactly what she is to us! I have forgotton how much you worry as a new parent - this girl is making me crazy already. It is truly a blessing and a miracle to have this new little person with us - and I cant believe how much I love her already. When Avery was first admitted to the NICU - I went in to see her just hours after being born and to my suprise they had a small pillow like bean bag in her bed - and it was blue with yellow stars on it - I couldnt hold back the tears - it was like I know Conner was there with us. I had wanted to update sooner, but things got so crazy with Avery in the NICU. Like I said - she is home now and eating well, gaining weight - and overall doing wonderful! An absolute miracle!!!!

Heaven has another angel. Sweet Charles Anderson passed away peacefully last night. He was surrounded by his loving family. Please keep this amazing family in your thoughts and prayers over the weeks and months to come.

I havent updated in a while - things are sailing along. I will be 29 weeks tomorrow and our little baby girl is getting bigger. The main reason for my update is to let everyone know that very very dear friends of ours are about to lose their son Charles to Tay-Sachs disease. Charles is just shy of 2 1/2 - he is one amazing liitle boy. Charles's family and ours bonded right away when we met a year and a half ago at the NTSAD conference. At that time sweet Charles had just been disgnosed. It was such a pivitol moment in my life to hold this amazing child after my Conner had died. I made the trip to Mississori last November and spent some time with Charles and his family which was right around the one year anniversary of Conner's death. I am truly grateful for getting to know this family and especially baby Charles. So - please everyone - please keep Charles and his family in your thoughts and prayers over the days to come. I will keep you posted on any new news. His website is www.caringbridge.org/visit/charleslee

I have tried to find the time to update since Tuesday night - but we have had so much going on I just havent had a chance. We lost a beautiful huge maple tree Wednesday night in the sever storms that rolled through and also had some other trees removed. We are also in the process of painting and replacing carpet - Wow! We had another ultrasound this past Wednesday and our baby girl is growing well and looking fantastic!!! 23 weeks today. Right now she is in the breech position - still has plenty of time to move, but makes is harder for Carl and Brenden to feel the kicks from the outside. So Im the only one who has enjoyed those little nudges so far. She is already over 1 pound!!! As we are working on the house - we also have to tackle one daunting task and that is cleaning out Conner's room to get ready for the new arrival. Conner never spent much time in his room - so the room itself shoulnt be too difficult, but his belongings - thats a whole different story. His clothes remain in his dresser and his crib sheet still shows the mark from where he would rub the back of his head back and forth. So in the next few days and weeks to come we will have some emotional times for sure. So now, about the Governor's portrait unvailing. In a word it was captivating just like our son. Now being pregnant has my emotions a bit out of whack - but it was so incredible to have Conner's Way a part of state history forever!!! We arrived early and got to sit in as the governors and first lady's portraits were unvailed for the contributers (a private small viewing of the art before the guests were allowed to view the pieces). The Governor talked of the day he and Kendall met Conner just a couple months afttr his diagnosis and the impact our son has had on his family. It was truly moving. Then the 800 guests were allowed in as the formal ceremont began. The artist Will Wilson whom painted the portrait of Governor Ehrlich spoke briefly about the significance of the bracelet saying "Conner's Way" then when Governor Ehrlich spoke to the guests he stated publicly in front all those people that we would continue to wear Conner's bracelet until a cure is found for Tay-Sachs disease and that with proper education and funding we can really get there. It was such a powerful moment for Carl and I, and a truly incredible way for us to continue to honor and carry out our son's name and legacy. As the tears welled up in my eyes hearing that my son is still making a difference I sent a kiss to heaven. Conner is such a part of everything I am, in every part of my life - its such a feeling to know that he ment so much to others as well. On the 26th, we will 18 months since Conner's death - I just cant believe it has been that long. The timing will be difficult this year, but our plan is to continue the tradition of doing our annual benefits. Last year we raised 26,500 for gene therapy research. The CTSF is the largest funding source to the gene therapy consortium and we are proud to help them raise money to help find a treatment ot possibly cure. Since it's development not even one year ago - we have funded the consortium with 150,000. It's truly remarkable the progress in such a short period of time. Thank you to everyone who has ever contributed to the CTSF or to Conner's Way - we ARE making a difference!

Desiree

Mothers Day brings out the worst in me!!! It's one of those days that is really special to most moms, but to me it carries a huge reminder that my amazing little boy is no longer here. Last year was my first Mothers Day w/o Conner and it was a really rough one. Im already dreading this Sunday. I shared my feelings with another mom and very close friend who also lost her son - and she feels the same way as I do - which is a little comforting just to know that Im not alone. I did go to the mothers day party at Brenden's school and he was SO excited to show me the card he made for me and honestly - I couldnt have asked for more. He can be so sweet. We did tell him about the baby, and he seems to be pretty excited about having a baby sister. I had my anaotomy scan this past week and everything was looking good. I will go back for one more in a month to be sure, also the baby will be a little bigger and that will be awsome to see. Feeling this baby move is bringing back so many wonderful feelings for me. I have forgotten how special it feels to have life inside you. We also were invited to the governatorial portrait unvailing for past Governor Ehrlich. We are very excited because Governor Ehrlich wore Conner's bracelet for the portrait and it will be included in the final painting. How wonderful to know that Conner will be going down in a piece of Maryland history forever!! We have recieved so much compassion from Governor Ehrlich and his family since Conner's diagnosis and we are forever grateful for that. Finally - to all the moms out there that are dealing with tough times and sick children - you are not alone and Happy Mothers Day. We have met so many incredible special women and mothers through our experience with Tay-Sachs and the allied diseases, and our best wishes go out to them on Sunday!

It's has made me crazy to keep this major secret for so long. We are adding a new addition to our family. We are very very excited to share that we are expecting a healthy baby GIRL October 3rd. Some of you know that we planned to use pregenetic diagnosis to try and have a healthy baby. When we lost the last pregnancy in Spetember of 2007 - we were horrified and heartbroken to learn that the baby girl would also suffer from TSD. We moved on and began our IVF cycle 1/1/08. Things went very well and we had many many healthy embryos to choose from. We transferred 2 non-carriers on Jan 16th 2008. We learned just 6 days later that I was pregnant.(With just 1) For those that do not know IVF w/ PGD allows couples that carry such devestating diseases to go through an IVF cycle, but with the added step of testing the embryos for such genetic diseases before the embryo/s are transferred to the uterus. Then the drama began, I got very very sick from the treatments and was on bedrest for nearly the entire first trimester. I also had a big bleed at 11 weeks and we thought that I may miscarry. We are glad to report that at nearly 17 weeks, the baby is growing well and I have had no further bleeding. SO we are very optomistic that things will continue to progress normally and we will be thinking PINK!!!

Desiree

Over Easter we got Conner's garden ready for the spring - It's now almost one month later and the blooms are coming up like crazy. I love just sitting out there. One plus is the lily's that we planted in there last year are sprouting. I cant wait to see them this year (they didnt come up last year) Now the only thing that didnt come up yet is the iris's - so we will see. We replaced the liliac in the center with a beautiful Royal STAR magnolia - notice the name!!!! We do have a few flowers that we need to split - so if anyone would like some flowers from Conner's garden - we will have a cut of daisy's and blue asters (the look like daisy's - but the are blue. We will aslo have a white flower - not sure of the name though. this year we also planted a two pink stargazer lilies for the baby girl we never got to have. We spent Saunday at baby Graces event. What a beautiful tribute to a beautiful little girl. Hearing her daddy recount the day of the diagnosis - what truly heartbreaking. Looking around the room you could see the dispair on everyones faces - and I looked at Carl, both of us tearing up and I said - you know we truly understand what he is taking about. I have always said that the day Conner was diagnosed was definatly the worst day of my life, and one I will never forget. I think people would think that the day he died would be harder, but thats not the case at all. It was a wonderful event, but as always - an emotional one. Todays a big important day for us - so some extra prayers would be great!!!!

Desiree

I have not updated in a while and soon i hope to have a slew of news to tell everyone about - we just have to wait and see. The most recent exciting news is that I was asked to speak at the 2008 Mayo clinic's healthcare symposium this upcoming weekend. This event is quite a big deal and I feel honored to have have been asked. Tom Brokov is the keynote speaker and Dr. Gupta will aslo be there - pretty cool huh? Our purpose is to be there to represent our issues with the healthcare system during Conner's illness and help them come up with ways to improve healthcare overall. I am really looking forward to this amazing opportunity. What a way to honor Conner and boost awareness of Tay-Sachs. The NTSAD family conference is also coming up at the end of the month - unfortunatly this year its not looking that we will be able to attend - Im not counting it out just yet - but not looking good so far. Also I encourage everyone to take a look at the Cure Tay-Sachs website - they are making HUGE strides in funding the gene therapy consortium - Kudos to Ken Bihn and his Ohio crew!!! We are so proud of what they have accomplished in less than 1 year. We have been dealing with a lot lately ( A LOT ) and those trying times always make missing Conner worse on me. There are some days I feel as if I am living in a fog. Brenden helps for the comic relief - he is so darn witty - It amazes me every day what comes out of his mouth. Love that little bugger!!!

Desiree

This year oddly enough I think has been a little tougher on me than last year. i have been on the verge of tears all day and could no hold back when we sent our birthday balloons to heaven a little while ago. I spent the morning looking over old photographs from the day Conner was born. It has been nice though to still get phonecalls and emails from people touched by Conner's story. I got a phonecall yesterday from a reporter who is doing a story on a wrestler who is takin part in the pins for kids program on behalf of Conner. This young man has continued his involvement even after Conner died - so he is a very special young man - thanks AJ!!! We havent been able to be as involved in the program as we were last season - you know how it goes - sometimes life just gets in the way. I did give my second lecure/ speech to the medical students at UMMS a couple weeks ago - that seems to have been very well recieved and I have gotten some great feedback already. These seemingly small events make so much difference to us. I also want to thank everyone who is remembering our sweet Conner today - especially those who have signed his guestbook, myspaced, emailed or called today. I havent really been up to talking today - but the contacts mean so much. I also spent a while in Conner's room this morning. It looks almost just like it did while he was here. I went through his memory box and looked at all the little tiny sleepers and hats, all the special stuff that we have saved. It's been a pretty emotional day. As another birthday passes there are new reminders of this rechid disease. There has been several new diagnosis over the past few weeks. My heart just aches for those families - as we have been in their shoes.

This was an update I started on new years eve - i never got around to finishing it, so I thought I should just go ahead and publisg it.... I have been up so late the past few weeks, not able to sleep. My mind is racing and my emotions are at full speed. With the anniversary of Conner’s death and his birthday right around the holidays - this time of year leaves me in a real funk. I always like to reflect at the end of a year and look back to see that I have done all I can do to keep Conner’s memory alive and think of what the new year will bring. We had hopes that 2007 would bring us some peace and new joys - and instead it also turned out to be a heartbreaking year. I had not posted this before, I suppose I had not really comprehended it myself - but we lost a pregnancy in September at 14 weeks along. It was a baby girl that we very much had wanted and we were so excited at the possibility of bringing home a new baby. We then got the results that the baby we had already fallen in love with, also was affected with Tay-Sachs Its like the Tay-Sachs nightmare that just wont end. 2007 was not just associated with heartbreak and loss - we also did some pretty incredible things too. The year started off with me presenting our Tay-Sachs story to the medical students at University of Maryland. I also spoke on a parent panel for pediatric palliative care at Sinai’s Grand Rounds. We had a memorial garden planting for Conner here at our house, We had the studio opening and dedication of Conner’s Corner, Our annual event and silent auction which raised just over $26,000 for the Cure-Tay-Sachs Foundation - specifically gene therapy research, We provided 17 affected families of Tay-Sachs and the allied diseases free amazing photo shoots with Soulumination’s Lynette Johnson and Sarah Mattingly. I have been able to attend the Cure Tay-Sachs board meeting in Ohio, the NTSAD’s 50th anniversary gala in New York, and I went to Missouri to visit the Anderson Family and baby Charles. We added a new Christmas tree just for Conner this year. I have decided to start my own photography business after years of doing it as a hobby. The name of my new business is Conner’s Way Photography of course.

Sunday night, December 2, 2007 family and friends gathered at the A Thousand Words Photography Studio in Marley Station Mall for the formal dedication of Conner's Corner. The brief ceremony was beautiful - a plaque engraved with Conner's Way sits on a shelf above the play corner. I complete the mural back in June - so it was amazing to see the corner finished. A tremendous Thank you to all those at the studio, especially Angie for the continued support and helping us in our crusade against Tay-Sachs disease.

It almost scares me how fast the past year has gone by - it seems like just yesterday I was sitting on the couch holding my sweet prince. Thank you to the Anderson family for allowing me to re-capture that amazing feeling for a while during my visit. I truly think that between our last benefit and the trip to MO to see Charles, it was the perfect way to honor Conner for this occasion. We were out of town for the actual anniversary which was very bittersweet for me. I felt totally miserable all day monday - and just couldnt wait to get home. When Im home I feel Conner all around me, and I miss that feeling when Im gone. I want to thank everyone who called,my-spaced, or signed Conner's guestbook monday - it really means way more than you could ever know. I think one of my biggest fears is that people will forget him. He is such an intrical part of the person that I am now and I wish everyone had had the chance to get to know this little amazing guy with the most incredible blue eyes in the world. I miss Conner with every passing second of every day, it is definatly the hardest thing I have ever had to go through. The next hurdles are of course Christmas, then Conner's 3rd birthday right after. Again, thanks to everyone for remembering and thinking of us on Monday :)

Desiree

Many of you know that our 3rd annual event was this past saturday. I am so pleased to announce that we raised just over 23,000 for the Cure Tay-Sachs Foundation. The event was wonderful and so successful. This was our first event without Conner - which was sad, but we honored him in such a big way by continuing our fight against Ta-Sachs. I have to extend a very special thank you to some very special people - who helped tremendously to make this years event a success. First To Shella and Dave Kirchner, you have the most compassionate family in the world - I am so luck to have met you and your family is so very special to me. Your girls are totally amazing - and so loving. It means so much to me that Conner has impactd their lives so much - in such a positive way. Ashlee, Devin, & Julie - you are incredible. You have touched my heart forever! To Kara - you have been my shoulder and such a great support through this. Love you! To Jeanne and Amy - after so many years lost after highschool - you have jumped right in and embraced our son and his legacy. you guys did a fantastic job this year getting donations for the silent auction - and without that, the event wouldnt have been what it was. It has been such fun to reconnect and have some girl time with old friends. To Laura & Kim thanks for also working on the silent auction and being there to support us when just a short whil ago we were just strangers. It's always fantastic to meet new friends who have opened up their hearts to Conner and our cause. To everyone who attended or contributed in any way at all - we have been so blessed that even since Conner's death - we can keep up the fight against Tay-Sachs and help to raise money to find a cure THANK YOU!!!! From the bottom of our hearts - thank you all for making this years event a successful one. this week marks the one year anniversary of Conner's death - so it is surely going to be an emotional week - thank you all for helping us celebrate wat Conner has brought to our lives. One additional thing - to the anonamous person who paid half the catering bill for Saturday's event - i was truly speechless and overwhelemed by your kindness and geneousity. We have donated the remainer of the bill which was covered to the Cure Tay-Sachs Foundation. Which amounted in almost another 2000 for gene therapy research. Kudous to you for being so thoughful and selfless. Cafe Mezzaontte did a fantastic job again this year - and to Matt and the staff - You ROCKED it this year! Thank you everyone. As we move into the next year we are unsure of what the future holds - but one thing is certain - Our Son Conner is looking down smiling that we are continuing to help others. We love him and miss him with every passing moment of each and every day. It's all for you my love!

Desiree

We are al geared up for Saturday - i have spent the whole week non-stop getting things organized - which is no easy task. We have raised nearly $7,000 dollars this far and the event is not even here. We have over 100 items in the silent auction which has sorta exploded in the last 2 days. You would think by the third year - I would have it all figured out. I guess it's easy to forget how much work these events are. We are so looking forward to the event. This will not only be an event in celebration of Conner's life, but also we are raising money for a great cause. This year - we are donating 100% to the Cure Tay-Sachs foundation. We are also honored to have very special guest attending Saturday's event. We have a new little Tay-Sachs kiddo - Baby Carmen who we just cannot wait to meet. Carmen is the first child in Maryland to be diagnosed since Conner. She is a very special little girl and we are so happy to finally meet her Saturday. We will also have Mac joining us!!! Mac is a fellow Marylander who was diagnosed this year with MLD. He looks like a real charmer and such a cutie. **** www.caringbridge.org/visit/cormacmurray ****Again, as the days pass we are praying for strength for Gabby's family. Her services are planned for Saturday - and we will be honoring her as well during our event since we are unable to attend the funeral.

With a very heavy heart we share the news that Gabby Rodgers lost her fight against TSD this afternoon- just days away from her 5th birthday. Please keep her and her family in your thoughts and prayers tonight and through the difficult days ahead.

I had an amazing trip to Chillacothe, MO to visit Charles and his family. holing him and hearing his little sounds were amazing. every second was so special to me and reminded me so much of my sweet Conner. It's is truly remarkable just how alike the little boys are. Holding charles was like holding Conner again. I can never thank the Andersons enough for inviting me to visit and spend some time with Charles. I have been so swamped with event stuff since I got back - I wanted to just share a little bit about my trip.

Tonight for the first time since Conner died last year we stepped foot into the church where his memorial service was held. It ha been nearly one year since we stood there in that spot. Before the memorial mass there was music playing (piano) - well it was none other than Andre Bocceli's "The Prayer" - looking around at those very stars that we looked at one year go and hearing that incredible song that is so special to me - I was in tears. All the families that experienced loss in the past year brought pictures of their loved ones and we all took turns bringing lighted candles to the alter. It was actually a very lovely service - but very hard for me to be there. We have been through so much in the past year and so many vast waves of emotion. This time of year I think is particullarly difficult sice it is Thanksgiving, Conner's passing anniversary, Christmas, then his birthday. i was pretty amazed that Brenden actually remembered the service last year. when the priest was giving the serman (he stands on a podium) Brenden said, "mommy, I remember when you went up there" Of course thats when I gave the eulogie at Conner's service. Looking around i could almost see myself standing there looking out at the packed church. So much of that night and the days immediatly following Conner's death are such a blur - but I got glimse of it tonight. We miss Conner so badly and it is so hard to ut your life back together after something like this. Im sure I will never be the same. i also learned this week that parents that loose children loose telemeres - I dont know what that really means - but the basic jist is that we undergo so much stress, that we dont live as long and are brains get a little messed up. I only bring it up because - well, my memory sucks - It's terrible!!! Just on a side note, Baby charles is a little under the weather - it sounds like pneumonia. Im so excited to be going all the way to MO for a visit next week!! I can not wait to get to spend some time with the Andersons and of course Charles. Please keep him in your thoughts as he battles this resp bug.

This years Halloween brings back a lot of memories from last year. It was last halloween when Conner began the downward spiral. He was a frog last year, and tonight when we were trick or treating with Brenden - I saw a little guy in the same costume as Conner's from last year. Made me smile for a second - remembering my sweet angel. Life has been so busy latley - where does the time go? We have our thrid annual event coming up in a few weeks and we are really looking forward to it. The info is listed on the events page on our site. Also remembering the Mulligans and the Gerber's as this is the one year anniversary of them losing their precious babies Clayton and Madison. We light candles for all of our special angels tonight.

http://www.youtube.com/watch?v=QQ0JR93gU9E

Oh, where to start First, its been a busy few weeks here at the Hopf's. Last week I flew to Ohio for the Cure Tay-Sachs board meeting - which was totally awsome. The best part was spending time with the Bihn gang, but I gotta admit Dakota was my highlight. Im very proud to announce our first research grant approval for 50,000 for the gene therapy consortium. Ken has been doing an amazing job at leading us all to the cure. I also went with julie to my very first PTA meeting - how cool, they have pre-school PTA in Ohio??? Anyway, Julie showed the Dakota's dream video and spoke to the 50-75 mom's at the meeting about The new foundation and Dakota, and most importantly our drive for the cure. It was very neat to see some else talk about TSD. ad not a dry eye in the house after the video - very powerful!!! I actually was so inspired, I made the same sort of video of Conner to show our supporters. We are very busy planning our 3rd annual benefit and silent auction for Conner, only this year we are sending the proceeds where they are needed most - to the gene therapy consortium. We are doing it through the CTSF so that our donors can recieve the tax benefits. The benefit info should be posted here soon ( I feel terrible, i have been neglecting the website nd it's in desperate need of some new info) You can see the info on his myspace page www.myspace.com/connersway So, this week I was able to travel to New York along with Sarah Mattingly for the NTSAD 50th anniversary gala. Very very awsome. Sarah and I were the volunteer photographers for the evening. We saw some familiar faces and some of the portraits from the Soulumination collection (from the 17 shoots we sponsored this april) were featured, and it was breathtaking to see the beautiful faces of the kids we all love. Rachaeli was the first one I saw as I entered the room. This little beauty is about to celerbrate her 5th birthday!!! www.rachaeli.com It was also awsome to see the TenBerge's there - great catching up with them. B.Elise is also nearing the milestone of 5 soon. The little star of the evening though was Rachael - who is improving and looking great. she is giving Canavan a run for it's money. A lot of very hard work went into making the gala a success, and it was a very very splendid evening. During the dinner they had a relvolving slideshow playing, also of the soulumination photos. I was nearly breathless seeing Conner's picture. I remember the day that photo was taken like it was yesterday. I can never thank the amazing and talented photographers that donated their time and talent to us during Conner's illness. so once again, thank you Whitney, Angie, karen, Connie, Sarah, Lynette, & Blair - you have given us treasures that can never ever be replaced and memories that are captured eternally. Sarah and I also attened the photography expo in NYC on Thurs, and every day i think more and more about making photography my real job. I suppose i will always be a nurse, but i really enjoy photography - so we'll see. a new website may be in my future. Sarah has me hooked - and broke $$$ Oh, what else.... I also want to thank everyone who had donated thier time and or items to making our silent auction a success - especially Kara, Shella, Jeanne, Amy and Laura - pizza and beer on me girls!!!

Wow it's been two years since the worst day of our lives. Conner was diagnosed 2 years ago yesterday. I wish I could say that that "time heals all wounds" but it's simply not true. The wounds are just as fresh as they were that September day when we learned that Conner was going to die. In addition there has been new heartache and loss in our family recently that makes this time much more difficult. I miss his smile so much and his bright blue eyes. Brenden talks about him all the time - I suppose thats normal? Our lives are so "abnormal" Im not sure what normal feels like. We see airplanes fly overhead and Brenden thinks Conner is on them coming home. Literally my heart aches as much now as it did 2 years ago. I am at a loss for words... really just missing my sweet angel.

$$$$ DONATE TODAY $$$$ The Cure Tay Sachs Foundation is officially up and running!! they were approved for 501c3 status so lets all send in our donations!!! All donations are tax deductible. Also - A huge kudos to all our supporters who have already purchased their CTS "very green" t's. Our family of supporters and friends have been the largest group to buy t's!!! YEAH CONNER FANS !!!! So if you havent gotten yours yet, please get one!! All the proceeds go to TS research. i am in the very primitive planning sages for our next event in which we will pledge all the proceeds to the Cure Tay-sachs foundation :) S if anyone has any silent auction items to donate - please email me. Also just on a side note for those who follow our story and the foundation stuff. We have decided to pledge a mulit-yer grant to the University of maryland for the Quality Control program (thats the tay-sachs screening qc that takes place every year and nationwide) As you know i have been working with Dr. Bliter at Univ of Md for the past year or so. We have provided the program with needed carrier samples so that all the labs that participate in the program can be re-certified (stating that they are preforming the screeing tests accuretly). I also want to say a quick TY to Craig and Dave for providing carrier samples from out of state on some of the rarer disorders Juvenile onset TS and Sandhoff. - You guys rock! This week has been emotional as I have learned of 3 new Sandhoff diagnosis and one new case of MLD - i will log back in and provide their caringbridge sites later so you can stop in and wish these kids and their familes well. All these kids are SO SO beautiful! I have been missing Conner so bad. I have these castings of his hand and foot that we did when he was 1 and they are on our fireplace mantel. Sometimes it's so great just to hold his little hand again! In addition to our new diagnosis kids, some of our family have been feeling yucky, so keep Gabby, Katelyn, & Charles in your thougts!

www.CureTay-Sachs.org

Finally after 4 weeks of waiting Brenden's DNA tests are in - We were hoping that he would not even be a carrier, but... He is. We were surprised to find out that Brenden carries my mutation (the rare one) and not Carls. all in all, I had suspected that he was a carrier, so at least we now know that he in no way shape or form will ever be affected by TSD himself. This makes the "birds and the bees" conversation a lot more interesting down the road. I will try not to obsess too much - since he's only 4. Last week was the one year mark since our sweet Dylan went to heaven - i just cant believe it as been that long. He holds a very special place in our family!! Just Believe. We love you Dylan. We also want to say YEAH to Krystie for finally getting out of the hospital after her BMT - Way to go!!!

Sometimes inbetween updates i forget what i have already said, so forgive me if I repeat myself. I have a fe things to update the first is that last month we went to the Casey Cares benefit and we were interviewed by channel 11 news. Yep Conner's picture was featured on the news and some quick details about him and our experience with Casey Cares. For those that dont know Casey Cares sent us to St.Michaels just a couple weeks before Conner died. this was after many many many unsuccessful attempts with larger wish-granting orgs. Thanks to all at Casey Cares to give us that most memorable and incredible family moments wth Conner. Casey Cares foundation suffered a total loss in a 6 alarm fire a month ago and they courageously are rebuilding and offering more families a chance to spend special time with their amazing children. Second; One family has been such supproters of ours and they have shown us so much love since meeting Conner last August - the Kirchners. Thank you!! Their 3 daughters have been so amazing and I can never ever say thank you enough. Their oldest daughter Julie just had Conner's star tattooed on her shoulder - it's our first Conner's Way tattoo!! It looks amazing!! Their middle daughter Devin did a documentary about Conner and his impact for her college film class - it turned out so well and we were so touched that out of everything and everyone out there she chose Conner. Ashley, their youngest has such talent. She is an amazing artist and has done a couple simply astonishing drawings of Conner. One of which we have framed in our sunroon so I can see it everyday. All these things are so incredible, but most of all it's just the unconditional love and support they have shown our family since meeting Conner last year. I only wish they had met him sooner. So...thank you Shella,Dave,Julie,Devin,&Ashley. Thirdly we were approached to have Conner's photo and name printed in several additions of Biology text books that will go to print next spring. We of course were happy to contribute a stunning picture of Conner so that people may get an accurate depection of just how beautiful these children are when they are learning about Tay-Sachs disease. Also Conner's story has been newly added to the cure tay-sachs website which should hopefully be ready for public launch in September. For those that want to take a sneak peak visit ******* www.curetay-sachs.org ********* Just keep in mind that it only for friends and family since it's not yet done. Thanks

Hey..... dont forget to long on to the cure Tay-Sachs foundaton website and order your cure tay-sachs t-shirts!!!

Wow july already - how the summer is flying by. Brenden is staying in school all summer - just three days a week and he is loving it and doing so well. I am back to work, a very little, but just to keep my feet a little wet. It's nice to catch up with old friends too. Im sure nost of you know by now that we did not make the Amex top 50 - im still not too sure how that happened - but now on to bigger and better goals. We are still awaiting 501c3 status for the cure tay-Sachs foundation which will hopefully be by September. Ken Bihn is a rockstar for all the hard work on the foundation - all the pieces are really coming together and the official website launch is getting closer. It's up and running - but not quite ready for public announcement. We just had Brenden's blood drawn (and he did beautifully) and the good news is he is in the clear for the risk of LOTS. (Late onset Tay-Sachs) I never entered a journal entry about this because it's so complicated to explain. Basically I have a rare mutation that has been reported in both juvenile and late onset TS - so although unlikey, they was a theoretical risk of him possibly having LOTS. So after much drama, his blood is drawn and at the lab for molecular studies. his enzyme levels are great though - (HUGE SIGH OF RELIEF) He arent sure about his carrier status until we get the DNA results - so we will see soon. We have nothing formal planned, but we will have another event sometime this year in hopes to provide most if not 100% of proceeds to the gene therapy research - which i really cant say enough about - it is looking extremely promissing in animal studies this far. We would also like to provide some additional funding to the quality control program for screening.I am now the board chair for the NTSAD for the QC program and I have been working closly with Dr.Blitzer at UMMS. this program is so important to be sure that carrier screening is being done to strict standards - so tests can be accurate always. But its expensive and we need to keep the large labs who do thousands of tests per year involved, but also make it do-able for the smaller labs as well. the most important thing is that screeing is expanded and the tests are done to the highest standards. We planted Conner's memorial garden May 5 and is gets more beautiful by the week. just about everything is in bloom right now and it has grown up so much. And an extra thanks to everone who helped with the planting or contributed a stone or flower. It is so beautiful and it is a very special place for me - it gives me a lot of peace and comfort. I keep conner's myspace updated with a different theme every month (at least I try) I just added photos from our trips to the beach. A place that also gives me so much peace and we have a lot of fantastic memories we made there with Conner. www.myspace.com/connersway

D

Thanks to everyone who logged on and voted - hopefully we will be hitting you up to vote again in July. It appears from this point that we made the top 50 - so another round of voting beginning in July could land us $5 million dollars for research!! I donth think I even need to tell you what that could do for the current gene therapy projects :) Yesterday was fathers day - not nearly as emotional for me as mothers day, but I sure it was pretty hard on Carl. He tends to be such a guy about this stuff. I had beautiful cufflinks made one with each of the boys photos and we made him a HUGE collage full of pictures of the three of them together. The normal battes of life without Conner still continue and my heart is literally breaking every day. Brenden is about to turn 4 and his questions get more and more intense and his comprehension of the whole thing is really growing. I try to tackle his questions as best as I can, but sometimes he leaves me utterly speechless. Oh - and we do read the guestbook still - every day - so please leave us a message :)

D

We could use your help. American Express is having a contest to fund one member’s project up to $5 million. John ten Berge has entered us in this contest as he is an American Express cardholder. Only American Express Cardholders are allowed to post comments or vote on a project. The project is Cure Tay-Sachs – it is not specific to the Cure Tay-Sachs foundation or NTSAD or anything else. It is our chance to get $5 million for research – that would be VERY significant. Cleary it is a long shot – but we’ll overcome bigger odds along this road we are going to travel. We need to accept we may fail more then we will succeed – but in the end WE WILL WIN!!! Let’s fire up this machine and see what we got!! What we need are American Express cardholders to go to www.membersproject.com. Our project number is 3504 – there is a “search by project” bar on the upper right side. Every member that registers at our project gets us a $1. The more that register the better chance we can make the first cut to 50 projects. We need American Express cardholders to go and post comments. Talk about family members that are affected, talk about research, write about anything that strikes a cord with them. (These are Ken Bihn's words I posted)

Well, I am long overdue for an update - but it has been so busy. Well first I had the opportunty to speak on a parent panel about Tay-Sachs and our experience with the death of a child. I was joined by 3 other families who too had the tragic loss of a child. Somehow it's oddly comforting to just know that your not alone. The past 2 months have been really rough on me for some reason. I find my self having internal battles just to get through every day. I was so nice to share my wonderful memories of Conner with the physicians who attended the symposium. Also it was a great time to educate them on Tay-Sachs. We also got the incredible news that our dear friends Angie and Jenn are in-fact opening their own studio this Wednesday officially. I wrote last year about how she had wanted to incorporate a play corner dedicated to Conner in her studio. Well after 14 hours of painiting - her studio officially has A Conner's Way corner for the kids to play in. I painted a mural - stars of course on two walls in the center of the studio space. The one wall has Conner's logo and the other says Conner's Corner and the saying... Cherish yesterday, dream tomorrow, LIVE TODAY. Angie is a wonderful talented photographer who learned of Conner soon after his diagnosis. She reached out to us and asked if we would like her to do some photos of Conner - which we graciously took her up on. Over the 14 months since Conner diagnosis she worked with him several times and has donated her time photogrphing all of our events from the auctions, dances, and even Conner's memorial garden planting. she has donated shoots to be auctioned off to benefit the foundation and also done private fundraising for the foundation. In addition to all that she has also done an amazing job at educating the public on the risks of Tay-Sachs disease. Thank you!!! So be sure to stop in for some photographs and also check out Conner's corner. Marley Station Mall in Glen Burnie.

I just wanted to share some more news: The CNN broadcast on baby Elise was almost cancelled - shame on them. Apparently it's bck on so please tune in tonight at 8 pm to headline news. Also some sad news as we are on th eve of the 6 month mark, we just learned that dear little Alexander May is quickly losing his battle with TSD. His family is from British Columbia, and Alex has been pretty sick for some time now. He may have only a short time left here, so please keep his family in your thoughts and prayers. I will post his web address in a seperate enrty - since they are so hard to seperate from the text in the upate - everythig gets kinda blended together. Also please keep little Riley Lue in your prayers. riley suffers from Sahdhoff and she has been having a really tough time latley. They are battling a pretty bad infection and hopeing she will rally soon. Thanks again to all my faithful readers!!

D

www.caringbridge.com/visit/alexandermay

www.caringbridge.com/visit/princessrileybear

Be sure to watch Nancy Grace tonight on CNN - she will be interviewing Tim and Kerri Rochman, Elise's parents. A benefit was held for Elise May 12, and unfortunatly some horrible men stole from their silent auction. Nancy Grace pcked up the story and is doing a teleconference with the family tonight. Baby Elise is a very special little girl to us. She is the same age as Conner. We were horrified to learn that people would steal from a benefit for kids with fatal diseases. Hopefully this inerview will raise the public's eyes to the devestation of Tay-Sachs and encourage more people to learn about the disease and get screened. This is wonderful news that people will get exposed to Tay- Sachs. Tomorrow is the 6 month anniversary of Conner's passing and it's sure to be a very rough day. Again - we truly apreciate all the emails and guestook signings. I know he has been gone a while now - but we faithfuly check the guestbook every day - so please drop us a line :)

The six month mark since Conner's passing is getting so close and for now Im doing ok. I have been spending some time talking with some of the families who have recieved their soulumination photos. Sometimes doing something nice for someone else helps to carry me through. So far I have talked to 4 families that have gotten their pictures and they have nothing but wonderful things to say. And in the midst of thier happiness for their memories, comes new tradgey. I learned today that there is a new diagnosis little boy from Sweden. i have not had any contact with this family yet, and I hear they are quite alone, being the only current case in Sweden. i remember Conner's diagnosis so vivedly and truly I think it was the very worst day of my life. It's ironic how most people remember their good dates, like the day they got married or the day their child was born, for me, when i think of dates... September 20 is one that i will never forget, and not in a good way. I found it interesting that at the NTSAD conference, we (parents) sat in a circle and when the topic of diagnosis date came up - i think every single one could recite it, just as if it was as important as the childs birthdate. For this is the date that all your visions and dreams were instantly shattered. I am grateful that we didnt have any length of time that they were trying to figure out what was wrong - we had no battery of tests with inconclusive results, instead we were broadsighted by a truck of sadness and fear of the days to come. every time I hear of a new diagnosis - it brings all the memories back, just like it was yesterday. people would tell me to live one day at a time and cherish every second - in the beginning...definatly easier said than done. It did eventually get easier and we were able to cherish every day and although I wish it was much much much loneger, Conner did live a happy full life. He knew love - pure innocent, and utter love every second of his life. In my conversations with some of the other familes, I feel so heavy hearted by their uncertain future. Living with a child who suffers with these fatal diseases is like being on a winding road with huge glorious peaks and dark valley's that can seem to go on forever. These kids are truly angels and all the parents are doing such a great job. Its so easy to feel frustrated and overwhelemed - for we are faced with the most terrible decisions that any parent must make. and the worst part about it is, that all the choices stink. I have some exciting things coming up, I have filled the board chair for the quality control program for NTSAD and i will have my first meeting this Thursday. i will again be working with Dr. Blitzer, which Im pretty excited about. Next week I am speaking on a parent panel at a pediatric palliative care synposium. Many of you know that I am a big advocate of palliative and hospice treatment - so I am looking forward to sharing our experience which was totally a positive one - and hopefully educate some of the health care providers on how to better sereve the pediatric population in regards to end of life issues. i heard from one mom that they had a horrible experience with hosipce and, it makes me so sad. it can be such a great support for both the child and the family - if done correctly. There is this stigma that surrounds the term "hospice", and many people feel that when you ae in hospice that death is eminent. Conner recieved hospice for over 1 year. It gave us the chance to bond with our nurse and she got to know Conner better than even our pediatrician. The acceptance of pediatric hospice by familes and also health care providers still has a long way to go, but i am hoping that by sharing our expericnce - it may help a future family.

First thing i wanted to say is thank you to everyone who thought about me this mothers day, especially those who made an extra phone call, sent an email, or signed Conner's guestbook or myspaced us!! We continue to read the guestbook entries every day and those little messages help us so much!!! This mothers day was so difficult for me, not only is it a day commorating the special bond between mother ad child, but it nears the 6 month mark of the our tragic loss of Conner. It's such a difficult balance to grieve over our loss, but continue to celebrate our love for both our sons. We spent the morning at a very special place that we used to go with Conner and then mothers day brunch. It was such a sad day for me, all I really wnated to do was stay in bed, but my two guys tried to make it special and they definatly did. We are seeing some more of the soulumination photos and they are absolutly amazing. I have seen 10 of the kids so far, so there is another 7 yet to see. I cant say enough how much this project meant to me and to see the results is simply amazing. We are continuing to work with Dakota's dad Ken Bihn on his new brainstorm of the cure tay sachs foundation. He is doing an amazing job and we are fully willing to chip in and do our part to make a difference for all the kids who are still suffering from this rechid disease and all those that will suffer in the years to come. We have some very clear cut goals and a definitive ending point which is incredible. I will continue to post the info here and also post the website info and any other pertinant info to keep everyone involved. Over the next couple months we will be needing help from all our supporters to help us raise the needed research dollars and expand our network of tay sachs awareness. So please email me if you are willing to help. We already have one awsome volunteer - Laura...You rock!!!

Desiree

On Saturday we had an amazing tribute for Conner. We had some family and friends over and we planted a memorial garden in honor of Conner. Each person and/or family brought a special brick to add to Conner's garden and thenwe had each person write a message to Conner on the brick. It looks amazing and I so proud every time I look at it. I have been having an rough couple weeks latley and i feel so lost inside. I know that i say that a lot, and I know most people dont or simply cant grasp what i mean. Its like waking upeach day and feeling like something is missing - only for me someone is missing. People often ask us if we will have more children and I never quite know how to answer. Our life is so complicated and I really dont know. There are so many variables to consider, emotionally, physically, and of course genetically. i am really enjoying Brenden right now - he's 3 going on 16 - he is so charasmatic and so incredibly funny. I guess for now -were content to just be... I am seeing some of the photos from the conference - and they look amazing - i am just so excited that we were in a position to do this for the families that attended the conference this yer - it was a huge undertaking, but a huge success. One of our new and close friends Dakota (who has JOTSD and post-STBMT) is having some complications right now - so please say an extra prayer tonight. I have been working closley with her family with their development of their new foundation cure-tay sachs foundation - much more info to come!!! I could write for a hundred years about all the things that rush through my head every moment - but thats all for now :)

D

today we were at brenden's soccer practice - how cute by the way!! Carl and I were standing there, I happen to look over and beside us were two kids standing together, I glanced at their name tags and the first one was Conner and the one right behind him was DJ - I knew instantly that Conner was with us there on the soccer field. For those of you who may not know, DJ is Dylan James Manning - Dylan is the first child we ever met with TSD and his parents were our inspiration for all of the Tay Sachs awareness, and screening. Dylan lost his battle ith TSD in August of 2006 - just a few months before Conner. So today, they were both telling us they were OK!! Sometimes the simpleist things mean so much.

D

We just got back from the 29th annual family conference in Boston which was so biter sweet. It was nice to meet all the new families and see all the familiar faces, but of course the reason we all were there is simply heartbreaking. This year we were able to co-sponsor Lynette and Sarah from Soulumination to come to the conference and have them work with vey one of the 17 affected familes and children who attended. The Conner's Way foundation made a private donation to cover all of Souluminations foundation costs involved in doing so many families. This was something that everyone knows I am so passionate about and it was such an incredible was for us to honor Conner. It was so amazing seeing the faces of all the families when they were getting their photos done - they were all smiling and celebrating the precious lives of there very special children. Also I went back to work the other night for the first time since the day we got Conner diagnosis on September 20, 2005. It was so incredibly emotional and a bit overwhelming, but I survived - so Im just going to take it slow and see what happens. I am also so pleased to have met Ken and Julie Bihn (Dakota's the rock-star's parents) Dakota is one of the JOTSD Juvenile onset Tay Sachs, she underwent a stem cell transplant at Duke and for the time being she is doing amazing - such a happy sweet girl. Ken is atarting a new website soon called www.curetay-sachs.com We learned some very exciting news regarding the clinical trials of gene therapy for TSD, they may be ready for human trials in 3-4 years - but the are in need of many more research dollars. Ken is doing an amazing job in getting this fundraising effort underway. We met so many wonderful familes and I got to hold some little babies that were Conner's age last year when we attended our first conference. It was amazing - When I hel baby Charles (15mos) is was just like holding Conner - sor a second I felt like I was. the most emotional part for me was holding my dear sweet baby elise. Elise and Conner are only 2 months apart and we were attending our first conference together last year. I held Elise and I sobbed like a baby - it was so emotional, I just sat there and imagined thats how Conner would feel and she cuddled up in the same spot Conner used to and she had the same movements and sounds - This little one holds a very very special place in my heart. All these kids are truely incredible and they are all so special, but something happens to me whenever I look at my darling Elise - It brings so many emotions flooding into my heart and I just melt. Overall it was a great conference and doing the Soulumination shoots for the familes was a dream come true for me - As all of you know, photos are something that i am so passionate about and I just wanted to give back to all the other families.

D

Last night we spent a splendid evening dedicated to Sweet Baby Grace. Grace passed away last year from Krabbe disease. Krabbe is a leukodystrophy - similar to Tay-Sachs. Grace was just a mere 1 year old. The benefit for Grace was beautiful and we were so honored to be a part of it. We were able to spend some time talking with Dr. Joanne Kurtzburg from Duke university. Through our conversation - it gave me a renewed sense of encouragement to continue our efforts to increase awareness about these fatal, yet preventable diseases. LAst night as we honored Grace - we also remembered Conner - Our angels will never be forgotten. www.sweet-baby-grace.com

D

Today is easter and Im feeling a bit sad. When I went down to get Brenden's Easter basket out, of course Conner's was right next to it. Funny how just loking at a couple of baskets just breaks my heart all over again. I remember last year - I filled Conner's basket with special lotions and fancy baby bubble bath and some super soft onesies. I remember it so vivedly and I just miss him. Conner's first Easter with us in 2005 he was just months old - he was still small enough that we have some pictures of him sitting inside his Easter basket - so cute. Just one year ago Conner was still able to see an smile and so interactive. It was just this time last lear that we had Lynette from Soulumination do a photoshoot of Conner. We had several other shoots throughout Conner's life with Lynette's friend Sarah. I have put together a tribute to their amazing work up on Conner's my-space page - so please take a moment and view his page www.myspace.com/connersway Happy Easter to my precious sweet boy - I miss you terribly and I love you now more than ever!!!!!

4 months have gone by and I just cant imagine one more day without him. Sometimes I literally ache - just to hold him one more time. I think for the most part we are getting back to our new "normal". Brenden is doing so very well in school and he is groing up to be such a big boy. He talkes about Conner pretty often and he loves to send him kisses every night. We are planting a memorial garden for Conner later this spring and we are really looking forward to it. Brenden is doing such a great job planting the seeds and watching them grow - even though he expects them to grow overnight. We also have our second NTSAD conference coming up in April - which should be amazing with the help of Soulumintion - who will be doing incredible photoshoots for the affected families.

D

It's been a while I know since my last update. i guess most of the time I just dont know how to say that I miss Conner so much and I feel so empty sometimes. We just passed the 3 month mark of Conner's voyage to heaven. It's only been 3 months and already it seems like so long ago to me. Thats good and bad i guess. Sometimes i think of losing him and I almost get my self sick - literally. It's so crazy - that sometimes i just want the world to stop for a minute, but the clock keeps ticking and time keeps flying by. i wish that i could just step back in time and kiss his little nose one more time. Charma - tonight I was scrapbooking and watching TV. I never atch lifetime ever - but i was looking through the chanels and this show Stong Medicine was on Lifetime - I remembered someone telling me once that they had a show about Tay-Sachs, so I flipped it on just to chech out the show. Can you even believe it, I turned it on just in tme to see the Dr. - discover the "cherry red spot" in this baby's eyes. Out of all the episodes that must air - i had to fall upon a TSD episode. We just got back from a vacation and we are hanging in there. Brenden is doing very well and we send Conner kisses in heaven every night. and he also talks about Conner a lot.

D

Just a clip of some of my thoughts of Conner on his second birthday. Today you turn two and I just can believe how fast the time has gone. It seems like only yesterday that I was bringing you home from the hospital. I felt then that I had been touched by an angel, only I hadn’t any clue that you were already chosen to be a true angel. There was something so special about you, even from the first moment. The night before you were born, I remember sitting with the doctors, and I was trying to make the best decision I could for you to be the healthiest you could be. You see, your safety and happiness has always been on my mind and my top priority. When you were only 2 weeks old, your daddy came home with the flu - so we slept downstairs for 2 weeks - and I told him just to say clear away from you. Even then I was doing everything I could to protect you. I only wish that I could’ve protected you from this horrid disease. I want to make sure you know how much I love you and I will always love you. Even though we are apart - you never leave my mind and like Brenden says - you are always in our hearts. I wear a necklace with your picture around my neck and whenever I get a little lonely, I always touch and rub the picture. Of course it lacks in comparison to holing you, but I will have to do for now. I have so much I want to say to you, I just don’t know where to begin. Last year when you turned one - I wrote this to you - “One day you will get to be my angel from heaven, my savior, until that day, Im dedicated to being yours.” Now just 1 year later you get to be my angel, my savior. And your are simply put - just that. Even when Im sad and missing you - I see you face every where I turn and little reminders of you, and it makes me smile. You gave us 22 months of wonderful memories and things that I cannot even express. My love for you is so deep - it’s nearly unspeakable.

Desiree

Today, I should be having cake and watching my two year old son tear open lots of fun toys and birthday presents. Instead I spend it, imagining all of it. I am missing Conner so terribly right now - i can barely speak. Thank you to everyone who has called or emailed, and my-space'd me today. It actually does help. Last night we honored Conner at the Pins for Kids match and we were very happy to be there. They dedicated the match to Conner last night, and they came back from an early loss to win big!! Today at 2:30 we will be letting balloons off to Conner in heaven. I wish I could put into words the feelings that wash over me with every new second of the day. It's just impossible - it's like the worlds worst mood swings. Later i will be posting clips of my letter to Conner on his second birthday. This is a tradition I started last year when he turned 1 and I have decided to keep doing it every year. Today is such a special day in my life - for it's the day I first met my very own angel. His birth was the most amazing experience, one I will cherish forever. I remember that day so vivedly. Brenden is doing well, only he wants to send the cake up to heaven too, and Im not too sure how in the world I can manage that one?? He's giving me extra love and kisses today - because he knows that it's a sad day for me.

Desiree

As the time goes on I just miss Conner even more. I just want to see his face and hold his hand, maybe sneak a kiss, just one more time. This week is going to be a very difficult one for our family. All in one week we will celebrate two events, of course "celebate" is not what I would say to describe the second. First - we get to celebrate Conner's 2nd birthday this thursday... without him. I just cant believe that just one year ago he was so incredibly healthy still. He was smiling and able to stand in his walker. And now he spends this year in heaven. If Im soundng a little wacko - I am just so mad right now. Stages of grief...right? I just want him here with me, I want him to make a mess of his birthday cake and rip open his presents, and do all the things he never could. On Wednesday night we will be attending the Pins for Kids event in Delaware. We are so thrilled to be a part of the program this ear and the kids are doing a fantastic job!!! Im sure it will be difficult, because the first match we attended, Conner was with us. None the less, I think it will be a great way to honor Conner the night before his birthday. So When Friday rolls around, it marks the two month mark from Connner's passing. This has by far been the lonleist two months of my life. The entire experience of losing a child is very isolating, but I just ache for him. There is a part of me missing - and I will never get it back. While I sit here mad and angry, and sad, I also cant help but let a smile sneak through from time to time. I think of him so often and he always makes me smile. We had 22 incredible amazing months with sweet Conner - i just want a million more. Those of you who knew Conner when he was healthy really know what Im taking about - he had this sorta prescence about hi, and so much expression in his face. Brenden made a face last night, and for a brief second I saw it - it was Conner's eyes - the expression was his. Please keep us in your thoughts this week! I spoke to the medical students at University of Maryand last week and told them all abot Cnner and our experience with Tay-Sachs diease and Conner. I hope that they gain some new perspective on the reality of such devestating diseases, and I hope they now possess the knowledge to prevt this tragedy for happening in the future for their patients.

Desiree

In just a hour 2007 will begin - I just cant believe it. The holidays have brought so much emotion. We have enjoyed many many smiles with Brenden - this is the first Christmas that he really understood - so he was very amusing opening all his presents. Im sure like many other families, we had drama too - which certainly didnt make this first round of holidays even more difficult. We just watced the memorial video of Conner that we had done for the memorial service. We hadnt seen it since then and it was so incredible - for a moment it seemed like he was right here with us. An all to familiar return to reality was right there waiting for us at the end of the video. We send kisses to Conner every night and we miss him so much. I think it's the most difficult emotionally for me. I literally feel like a part of my soul is missing. Conner gave us a very amazing 2006 - we have been working so hard to make a difference for TSD and we will further that mission in 2007. Over the past year we took Conner to Disney World where he laughed all the way through Pirates of the Carribean, we went to Deep Creek Lake and spent the days on a boat crusing the lake, and the nights cuddled next to the fire. We had a few trips to the beach, where we let Conner's sweet soft feet feel the sand, and a little bit of sunshine light his beautiful face. We took a trip to NYC - which was so amazing. Conner rode the carosel in Central Park, and we saw most of the popular touristy places. Just three weeks before he earned his wings we set off for St.Micheals. It was so hard a first to learn to take each day at a time, but we quickly had to learn that - if we wanted to enjoy the time Conner has, especially the really healthy time - we had to make the most of every opportunity and every moment with him. So... we took as many little family trips as we could and we snuggled every day - I kissed him probably one thousand times a day. We have so many memories, so many incredible memories. Even though we traveled, many of my favorite memories are right here at home with Conner - just hanging out holding him and touching his soft skin. We have adapted the saying...Cherish Yesterday, Dream Tomorrow,...Live Today!!...... this is now our way of life - even with Brenden. We have had to learn the hardest way every that you cant take one single second for granted. For all the lessons, and all the courage Conner has given me... Thank you my sweet angel. I dont know what 2007 will bring, but this year we will look at the stars, and remember Conner for the incredible, amazing, vibrant, blue eyed baby boy he as and is. I also want to extend our hand to any other families that are venturing on journeys like ours. We will have a moment of rememberance tonight for all the families who have lost their children in the past year - let our angels live on forever through us!! Happy New Year

Desiree

10 mins and counting until Christmas. Today we read Conner's message boxes that have been sealed since his memorial services. It was so emotional. Everyone had such wonderful things to day and it helped us to contine to involve Conner in our holiday. Brenden is so excited over Christmas, which helps too. As I sat and read the messages I found myself crying, and laughing, and smiling and frowning all at the same time. I miss him SO SO SO bad. Last year at Christmas Conner was newly diagnosed, so it was a really tough year. at the time I never really thought that this year he would be in heaven already. Last year he was still trying to crawl, and smiling and laughing....now this year he's gone. Sometime's I just cant believe it. We went to mass today and it was the first time I had been in the church since the service. I kept imagining how it looked that night and where his pictures were. How fitting that there are beautiful vibrant stars painted all over the ceiling. So I found myself gazing up during the mass as if I was looking into Conner's eyes. We are struggling every day to continue our lives without our amazing baby boy, and the holidays are even more difficult. As we are grieving this year we also must take a moment and honor all the children that have lost their battle with TSD and all other reasons. Our TSD community has had many losses this year and we are constantly thinking of those families and wishing them strength to get through everday, especially the holidays. We have had so much support from the friends we have met- thank you all!! A special thank you to the Mannings, for everything you do, not just for us, but all the families - you guys are amazing. We love you D!

Desiree

Christmas Day will mark Conner's 23month birthdate. It saddens me so much to know that this year, not only will he be in heaven for Christmas, but also his second birthay. We have his memorial message boxes sitting under the Christmas tree and we plan to read them on Christmas eve. something to look forward to. Thanks to all who wrote Conner and us a message. We miss him so much, and we have his huge pictures up all over the house - so it does help, when Im feeling sad - I can look up in any direction and see his sweet smiling face. Brenden is doing pretty well and we make it a nightly ritual to send Conner kisses in heaven every night(and sometimes during the day too). He knows what we have told him, but Im not really sure that he actually understands what really happened. The night Conner got his wings, we woke Brenden up and he gave Conner a kiss goodbye and told him he love him. I hope he remembers that someday. We just learned that our NTSAD fund is over 20,000. So we achieved another one of our goals - which we are very proud of. Thanks to all our friends, family and supporters for making our goals a reality.

Desiree

This morning I awoke at 5, just in time to catch one last lance at the stars before the sunrise and another day without my Conner begins. As many of you know the day after Conner’s memorial service - we left on a little trip. We decided to try and do something fun for Brenden. We took Brenden to Disney World, were we had made amazing memories as a family when we were able to go with Conner. It felt very weird, and just like a part of me was missing - on a family trip without my entire family. Despite missing him like crazy - we did manage to have a good time and most importantly give Brenden some much needed fun and attention. The very first night we were there, we were walking around the resort and I happened to notice a metal block on the sidewalk - and on the block were stars. A few steps later we saw a frog on the edge of the sidewalk. For those that know us well, and Conner - of course the stars are very symbolic to us and Conner slept with a stuffed frog every night since our trip to NYC in June. He was even cremated with his green frog. The three of us sat there on the sidewalk just watching the little frog for a while. Suddenly we felt so alone and these little things every day remind us that Conner is all around us . A few days later we stepped into the Magic Kingdom and randomly stumbled upon Andrea Bocelli singing “The Prayer” on Cinderella’s castle stage. This was always a special song for Conner and I. When he was a baby I would sing him this song while I rocked him to sleep. We even had this song played during his memorial service. As I stood there in front of this beautiful castle, in this magical kingdom, listening to Andrea Bocelli, I just began to cry. I miss Conner so much and even though these little things, sometimes so mysterious remind me of him, I just long to hold him and kiss him; even if just one more time. We returned home on Thursday. Very hard to be back in our home without Conner. There are huge pictures of him everywhere, and little keepsakes, but somehow it’s just not the same. It’s been a very emotional weekend and I have shed so many tears. Last night as the annual candle lighting for children who have died. Last year we had a quiet ceremony at our home, in memory of our friends that had lost a child. This year however, it had much more significance. We were able to spend the evening with our incredible friends Mike and Lisa and two new friends Jeff and Terri. Terri and Jeff we learned last night, have also been though a devastating loss; their sweet baby Philip only lived 4 days. We all sat together quietly with our candles burning brightly, and I had a picture of Conner with me. Carl and I reflected again about just how special Conner is to us. As I awake this morning, his flame is still burning brightly. As we remembered our sweet Conner - we also remembered all the other angels who have lost their battles with Tay-Sachs and the other Allied diseases and also 2 other very special angels to us - Aiden Daugherty and Kyle Wiggins. We received many cards while we were away and many emails - Thank you so deeply to all those who have supported us in one way or another during this very traumatic and devastating loss. We will be continuing our work against Tay-Sachs and Conner’s Way Foundation - for every day somehow - Conner keeps showing us “Conner’s Way”

D

i will e posting another update in a few days - but in the mean time - I wanted to share the speech I gave at Conner's service. I wish I could find the profound, moving words to truly explain what Conner means to me. When I think of my precious son, it makes me smile . Conner blessed us with an incredible journey for the past 22months. Form the moment he was born and placed on my chest, we shared an unspeakable bond. In the beginning Conner showed us his charm with his sweet laughter and amazing smiles - he even muttered Ma ma a few times. There were many nights I would hold him close to me-- my skin to his, feeling his breath on my neck and his heart beating against mine. I would stroke his perfectly round head and caress his chubby little fingers As Conner became sicker and began to lose milestones - we made sure that he still was able to live his life to the fullest. We have made the most incredible memories - together as a family. his final moments here on earth, were spent them much like his first. His skin against mine - with me stroking his little head and Carl and I holding his little hand as he took his final breaths. My son is now an angel in the purest sense of the word. He is flying high above us and looking in from time to time. We will miss him tremendously and we are sure to shed many tears over the weeks and months to come. His work here is far from over. We will continue our work to further TSD education, research, and screening. Our efforts, know as Conner’s Way will keep our son alive forever. If love were a cure for Tay-Sachs - surely Conner would have lived forever Some people only dream of angels, we actually held one in our arms Conner was a truly incredible son to Carl and I, and the best baby brother Brenden could’ve asked for. Everyone please look to the ceiling in this church where Conner was baptized, and to the starlight sky every night - and please remember our sweet shining star Conner. Conner’s Poem Eyes so fiercely blue, like an ocean wild and free His spirit so refreshing, amazing just to see. A smile so truly captivating, even at first sight His skin soft like pearls glistening in the light. Life’s alluring mystery, an angel here to love His soul so brightly shining, through the magical stars above. To my son Conner: I loved you from the moment of your existence and I will continue to love you forever. There will not be a day that passes that you are not with me. You are our guardian angel - and I love you bunches, and bunches, and bunches. CARL’S guest book entry form the day Conner earned his wings Conner, Mommy, Brenden and I are thinking about you and we know you are looking down upon us and smiling. We have our very own gaurdian angel with the bluest eyes and perfect little smile. I Love You and you will always be in my heart forever and ever. Daddy Daddy please don't look sad, Mama please don't cry. Cause I am in the arms of Jesus and He sings me lullabies. Please, try not to question God, don't think he's unkind, don't think He sent me to you, and then he changed his mind. You see, I am a special child and I am needed above. I am the special gift you gave Him, the product of your love. I'll always be there with you, and watch the sky at night, find the brightest star that's gleaming, that's my halo's bright light. You will see me in the morning frost, that mists your window pane, that's me in the summer showers, I'll be dancing in the rain. When you feel a little breeze, from gentle winds that blow, that's me I'll be there planting a kiss on your nose. When you see a child playing, and your heart feels a little tug, that's me I 'll be there giving your heart a hug. So please Daddy, please do not look sad, Mama don't you cry, I am in the arms of Jesus, and he sings me lullabies.

Desiree

Well, the past few days have been so busy and even more emotional. I miss Conner so much i can barely stand it. We have the large poster prints displayed all over our house and everytime I look at them it makes me smile and cry at the same time. Today is Conner's memorial service - which I am a little intimidated by. I will be giving a rememberance speech -so lets hope I can get trough it. We have a special video done to be played in the church, so Im sure there wont be a dry eye in the house. We have had so much help over the past days - Sherri Manning designed these incredible pamphlets - that are beautiful. Today is sure to be exhausting. We have some good friends coming up from NC, and My best friend from Louisiana flew in for the service. Conner is such an amazing little guy - hopefully he will help us all through todays events. I just miss him so much.

D

Memorial services will be held at St.Augustines Church, Elkridge MD Wednesday, November 29, 2006 at 4:30 pm Memorial Wake will take place at our home - where our fondest memories of Conner surround us, immediatly following the church service. Wake will be from 6-9p.m. In leiu of flowers - donatons may be sent to National Tay-Sachs and Allied Diseases Assoc 2001 Beacon Street Suite 204 Boston, MA 02135 Checks payable to NTSAD with Conner's Way in memo section or in an accompaniing note

As we sat holding our precious son, Conner flew far and fast at 2:00 a.m. Carl and I sat holding his hand and his sweet baby soft skin to mine as he took his last breath here on earth. He was incredibly peaceful and comfortable. The past few days have been very difficult for us, as we have watched our Conner fading further away from us. He is such an amazing child and will forever be that way for us. Thank you to all who have prayed and loved Conner as we do. I will post services information when it is available.

D

tomorrow Conner will be 22 months. The past two days have benn very very very hard. Conner's breathing is very shallow, and he is at times gasping for air. He has lost a tremendous amount of weight, and he is so skinny. Thanksgiving night we had our priest come and give Conner his last rights. We really thought that he may not have survived the night. I guess he's just not ready to go yet. Even though his breathing is so shallow, he has been wide awake and showing off those beautiful baby blues, and his georgeous long eye lashes. He has been so incredibly at peace and comfortable. I have been holding him non-stop and I just cant bring myself to ever put him down. For now we venture into another night, unsure of what the daylight will bring. Thank you to everyone for the support and prayers!

D

I have been trying to update the site for the past couple days, and everytime I start, I just cant bring myself to finish. The past 7 days have been extremely emotional. Sometimes Im great, and others - Im having a meltdown. Conner is looking pretty tired, and skinny too. He hasnet really eaten since friday afternoon - so we are going on almost a week. We have ben doing our best to keep offerng bottles - but Conner has no interest in eating. This is so incredbly hard. We had some photos done by our dear friend Sarah Mattingly - who I will remind you works w/ Lynette for soulumination. I got a sneak peak - and they look amazing. Despite our heartbreak and emotional messiness, Conner is still looking very peaceful and content. He has not had any seizure activity, and he has been spending lots of time awake. We have had a lot of visitors over the past few days - which ironically has been good - a nice distraction. Our friends have been amazing through this time, an extra special thanks to the PICU nurses who have been feeding us, and Mike & Lisa, Laura, Kara, and Shella for going above and beyond. It seems so crazy, I heard myself say funeral outloud for the first time yesterday, then I burst into tears. We have been thinking of it for slong, but suddenly when you hear it aloud - it has a whole new sense of reality. I wish i could try and put all my feelings and emotions into words, but I am literally emotionally exhausted. I want Conner to be with me forever, I want to see him get on the school bus for the first time, play sports, graduate highschool, get married - and so much more. The waiting and uncertainty is so overwhelming. I cut a lock of Conner's hair tonight after his bath and it just broke my heart. Well, tomorrow is Thanksgiving, and we will be giving thanks for the amazing time that we have been blessed to have Conner in our lives

D

Long overdue for an update especially with so much going on over the past few days. Where to begin. Carl and I have had an incredibly emotional and difficuly weekend. As all of you know Conner has been really sick over the past month. It's been very difficult to see him get sick, then better for a day or two, then sicker yet. This last respiratory insult was surely an aspiration pneumonia - and at its worst, Conner was on 5 Liters oxygen, around the clock albuerol, steriods and and having some sporatic episodes of facial cyanosis. He had been having extremely high fevers that were very difficult to control, he even appeard at one point to be going into septic shock. It's hard for me to even recount and write about him that way. After so much careful thought and consideration and imput from his doctors and nurses we have decided to discontinue the feedings from the NGT. He is obviously not tolerating the feedings and to be honest he isnt even interested in eating. We pulled the feeding tube out on Friday night - we have attempted bottlefeeding seveal times to no avail. so over the past few days he has only taken 1oz. All that said he has been so peaceful and looking greater than we have seen in a long time. We have been able to get him totally off the oxygen and we have been loving and cuddling the heck out of him. As i have talked about so many times in the past, we dont want him to suffer and after the past month, it's clear that he has been. so, in stopping the feedings, it's only a matter of time until he will earn his angel wings. We have shead so many teard over the past couple days - even though we knew this day would one day come - it has always seemed so sureal. So we are going to be spending the remainer of Conner's time loving him and being a family. we put up our kids christmas tree on saturday and cried a river as we hung all of Conner's special onrnaments on the tree. There are pictures of him from last year - smiling and giggling. When I compare Conner from just a year ago, it's clear just how much the disease has taken away. As all of you can imagine - this will be an incredibly heartbreaking time for us, so please keep all of us in your thoughts and prayers as we prepare to let our sweet angel fly. I will tryto keep the updates going as best as I can - just one day at a time.

D

Well Conner's new tooth count is up to 3 new ones. Ouch. He seems to be getting over the respiratory infection slowly. He's on 3L oxygen and still needs the ngt to eat. H's doing a ton of coughing - which is great and we are sucking all those yucky boogies out with the sxn machine. Since Saturday his breating has gotten much more comfortable. Now, it can never be all good news - yesterdy I noticed this small rash on his leg and today it's on his belly, leg, and back - and Im pretty sure it's shingles. What a mess.The fevers are also under control now that all the teeth have broken through. I think the 4th is next on the list - i can believe it my little guy went from having 8 teeth to 11 in just a week.

Desiree

A sigh of relief - the second annual silent auction was a great success. We raised almost 17,000 last night at the auction. We owe all of our attendees and donators a HUGE thanks. Seeing the love surrounding Conner last night was very incredible for me. it's those moments that make me feel so good. i was a little worried, since Conner has been so incredibly sick. I was afraid he wasnt even going to make the benefit. He is still pretty sick and on 5L oxygen and needing a ton of suctioning, but that didnt stop him from stealing the show last night. i though people would be a little intimidated and scared of all the equiptment, but he was still held and loved last night by all. So thank you everyone for making last night a great experience. So now for the totals - Last night the auction and 50/50 raised a total of 17,000 - Holy cow!!!! we are so excited. We are in the beginning stages of planning a community screening next year. We again were joined by Governor Ehrlich - who has just been simply put a great friend. So we have lots of plans for the future and now we are able to accomplish our first goal of a total pledge to Conner's fund within NTSAD of 20,000. I just cant say enough about last night - it was a huge struggle for us, Conner has been so sick since Thursday - - we honestly thought he may not even make it to the benefit. Taking care of him, and Brenden, and preparing for the benefit was quite a task. Cafe Mezzanotte did a fantastic job - the food was delicious. Another special thank you to Patti, Brandy, Fran,and Roxanne you guys are the workforce behind the scenes - things ran so smooth - great job. Now to - my very good friends, Kara, Shella, Bonnie - YOU ARE ROCKSTARS I coudnt have pulled it off without your help - THANK YOU. Now for my sweet angel Conner - you amaze me every day and i love you so much - it's just indescrible. Your sweet face gives me the strength to keep going, even when sometimes i just feel like giving up. I love you bunches!

Desiree

something normal to report fora nice change. Conner has been really grumpy over the past 2 weeks and we have tried everything - or so we thought. i have discovered that he has cut a tooth!! Ye-ha! he was about to cut his premoalrs last year when he hit a huge surge of disease progression, and they just stoped cutting. But one is definatly broken through and I think he's about tocut another one. So a little motrin and he has been much better. He absolutly hates the orajel - which I do admit tastes terrible. We still have a NGT down to help him out w/ feeding. He can only seem to take about 2 oz at a time - before he loses coordination and starts to choke a lot. We are super excited about the benefit on Saturday. Im working my butt off, but it's all worth it. On Sunday I got a little upset over Conner and Brenden told me "don't worry mommy, I get you a new baby" Totally broke my heart - what do you even begin to say to that? What a mess - sometimes I feel so lost and helpless. I do have some very sad news about another Tay-Sachs angel. baby Madison was diagnosed when she was 10 months old and very quickly underwent experimental stem cell transplant at Duke. She turned one in August and she earned her angel wings yesterday after many complications following the procedure. this is an incredibly hard time for us as so many little ones have passed away in the past few months. So those of you attending the benefit this weekend - please remember these sweet amazing babies and the reason we are fighting so hard for education and screening. So be generous with your bids and help us change this disease forever. We are also committed to sending a donation to Madison's family. As you can imagine - the treatment she recieved at Duke was extremely intensive and incredibly expensive. And as usual - their insurance company is pulling out all the stops to try and get out of paying. please keep all the sweet Tay-Sachs babies in your thoughts and prayers - especially the Gerber family who is dealing with such great pain right now.

Desiree

We just got back from a fantastic trip to St.Michaels, curtosy of the Casey Cares foundation. We had amazing fall weather, and got some great pictures. It's so quiet and peaceful and the fresh air was wonderful for all of us. We left on Wednesday and Conner was very very sick again. In fact we had to find a local oxygen company to help us get portable oxygen tanks because Conner was requiring 3L/min, so we were running out really quickly. We agin had to put down a feeding tube - which I just hated, but I pulled it today, and so far so good. Im pretty confident that this is his first aspiration pneumonia - and it was a really rough one (not quite over yet) Im not sure he will survive the next one. The first time he got sick this winter I was really confident about my decision to put down the feeding tube on a short term basis to help him out. this was just a few weeks ago, in the past three weeks - I have definatly noticed some more disease progression. his seizures have changed a bit and Im sure the brain damage is progressed as well. this time, I was a=very uneasy about the feeding tube. He had only had 4 days in between the colds, and I just hate to see him suffering. he was breathing so hard and having so much trouble. We did decide to start him on antibiotics and he does seem better. things can just change so fast - it's terrible. we cant plan anything and every day is so unpredictable. We are super swamped this week with the next benefit on the 11th. I have tons of stuff to post on the website, and I just dont know when I will get to it. I know the guestbook is still down, I just havent had the time to spend getting all my notes and info on upcoming events to Michael. Hopefull soon, we have lots of things going on in the next month. REMEMBER EVERYONE !!!!!!!!!! This month is Conner's Way Tay-Sachs awareness month in Maryland. So help us by spreading the word about TSD and carrier screening - also please join us for Conner;s event on the 11th. Also I have to throw this in - even though Im not very political. please vote on Tuesday for Governor Ehrlich. Governor Ehrlich has been a great friend and advocate for us and our struggle with TSD. he has been at EVERY SINGLE event we have ever had for Conner and he even calls to check in now and then. Oh, and the LOVESAC is groing on me. I cant say tht I think it's all that wonderful, but it's great for Conner. For him it must be like laying on a cloud. I got him another one (from a less expensive company, because they are crazy expensive) for upstairs. I have to say I was pretty bummed that we couldnt take it to St.Michaels with us - it's just too big. It worked out fine though. Conner and i got the master bedroom and it was just so incredible to have him right there. We could hear the bells from the church every morning - great memories for us. I will be putting out some pictures on Conner's myspace page later today - hopefully.

Desiree

Today has not been a good one. We learned this morning that our dear friend Melissa lost her son Clayton this morning. clayton was Melissa & Joe Mulligan's second son to pass away from Sandhoff disease. Sandhoff disease is very similar to TSD. Melissa was a very big help to us when Conner was first diagnosed and she launched Conner's first ever website. Please keep Melissa and her family in your thoughts and prayers. Ok, now on to Conner. It seems like Conner may have the beginning of an aspiration pneumonia. Last night he vomited, which is totally unususal for him and he has been requiring oxygen since then. He is also having some low grade fevers and increase need for suctioning. So it looks like here we go again. We are still going on our trip to St.Michaels - we will just have to pack a little more stuff. We will keep you posted, but I need to remind everyone that any one of these colds or pneumonias may be fatal to Conner. Pneumonia's are usually what ultimatly is the cause of death in these children. i cant even begin to express how this knowledge makes me feel. Conner is susch an intrical part of who I am, and I am scared to death of the future without him. It's just almost un-imaginabe to see yourself with out your child. i have Brenden and for that I am so grateful, but there will always be a huge void in my life for Conner that can never be fixed. Im trying to just stay strong and carry on "normal" life - and live one day at a time. that is something that took me a very long time to achieve, but it is a way of life for me now.

Desiree

First, I have to start this update off by telling everyone that Conner has been doing much better. He is eating by bottle and - like a horse. He has been a little fussy over the past 24 hrs, but he has been sleeping comfortably since this afternoon. He has a way of making an a** out of me when I right good updates, he always does something funny. His LoveSac arrived after working some magic at FedEx. It took me 2 hrs to break the compressed foam apart, but it's set and ready to go. So far im not sure what all the fuss is about, but he does seem to like it. OH, he also over the past few days lifted his head clear off my shoulder several times - he hasnt done that in probably 6 months. Now that he is feeling better I cant wait to get him in halloween costume and snap some pictues It supposed to be a beautiful day, so he will hit the streets, in his chariot on haloween night, acompanied by his big bad lion brother Brenden. He insists he is a "bad" lion, not a good one??? November is just a couple days away and we will be celebrating his "CONNER'S WAY TAY SACHS AWARENESS MONTH IN MARYLAND" this is such a huge acomplishment for us and we are very excited. I have to admit i have some great ideas, but since Conner got sick i way behind on everything. We still have a lot of things planned for the month, including his Second Annual Silent Auction - November 11th - for those who havent gotten your tickets yet, please do - i need to get a head count for the caterer :) We had a very unusual art piece created of Conner. I have it posted on his myspace page for people to view. It's incredible and done by a very talented artist named Jessica. For more ifo on her work please ck out www.karenclarkphotography.com Karen is a very wonderful photographer who has worked with Conner several times and she carries Jessica's line of altered art. We are going on a little vacation for a few days to St.Michaels, thanks to the folks at Casey Cares foundation. We are so excited to have a great few days away just the 4 of us. We will appreciate it so much especially since Conner gave us that big scare with that horrible cold. We are aslo so excited to have some very dear friends from NC (we met them on our honeymoon, they got married the same day we did) coming up for the event. We havent seen them in at least 5 years and we cant wait to introduce them to Brenden and Conner. Happy Halloween!!

Desiree

Conner is doing a ton better, infact eating more and more by bottle!!! Hooray. Looks like he's kicking that nasty cold. We are eagerly awating the delivery of Conner's lovesac, but so far we have had a terrible time. It has been on a fed ex truck since Wednesday. And it loos like it's not coming again today. Im so frustrated!!!! Brenden also got some new pets, two hamsters. One is named Tea Cup and he dosent wat the other one to have a name. They are cute little guys ( at least the guy at the pet store told me they were to "guys", if not we may be giving some baby hamsters away) we are looking forward to haloween, cant wait to show picturs of Conner and Brenden in their costumes :)

As Conner keeps getting close to the 2 year mark and in light of this recent cold - I get more scared every day. I am now finding myself second guessing the choices that we have made for Conner. I feel in my heart that I have always done whats best or him up until this point, but what about the future?? My head is getting in the way because Im just so scared of losing him. The past 21 months have been the happiest and saddest and incredible month of my life. I have this amazing little guy and a toddler who continues to grow and get more personality every day. I have watched my friends dissapear and made new friends. We have watch our family come and go. This is one journey I would gladly give back. My beautiful beautiful boy - I just want whats bst for him. Over the past 21months I have learned so much about myself, and I owe all that to Conner. Soemtimes you wonder how susch a little baby who has never really said a word could have such an impact. Conner is so incredible and so loved - since he has been sick - we have been getting a TON of super snuggle time which I am crazy about. I sit on the sofa holding him to my chest and I could hold him for one hundred years - if only time would allow. Sometimes my biggest fear is that i will forget, I will forget the sound of his laugher, i will forget the feel of his baby soft skin, I will forget the incredible smiles that mean so much Im terrified. I want so desperatly to remember every vivid detail and memorize every inch of his perfect lttle body. I want to remember how it feels to hold his puggy little hand and feel his little baby breath on my neck when he's cuddling me really close. All I can say, is that good and bad, happy and sad, I have been blessed and truly touch by an angel. I can only hope that these memories will stay as vivid in my mind as they are today. Conner is slowly improving from his recent cold - and hopefully he can start taking bottles again soon. I have been letting him try bottles every day, but o far I have only been able to get 2oz in at a time - so that wont be enough. We will just keep trying. Hsppy 21 months - sweet angel!

Desiree

Last night was terrible, we went to sleep at 10, thats 10 AM. Conner was very coughy and snotty and to put it simply was just awake. He took a little from a bottle today, but we have left the NGT in for a little while -that way he wont have to get to stressed out while he's sick. In fact I have to admit Im falling asleep just writing this update. Even though Conner's sick which I hate, we have had such a grat time cuddling and spending quality timw together -which I have enjoyed so inredibly much. Thanks to everyone for sending messages - we love them, every one!!!

We had a good night. I have left the NGT in for another day or two - just to try and get Conner over this hump. He has been so comfy and cuddly - it's great to just hold him and not worry about the distress he has wehn eating. He has had a few good coughing spells and getting up some pretty gnarly thick mucous. I have only seen one seizure in the past few days. We have increased bot the Phenobarb and his Valium - so it's seems to be effective. Well i have to get back to my little guy - he's just so sweet. i posed some amazing video footage of Conner on his myspace page so check it out to see him laughing and giggling - it's super cute!! ******www.myspace.com/connersway******

I know I have been writing updates everyday so I hope that everyone can keep up. I just want to mention - our guestbook is temporarly down - so feel free to directly send us messages or send them throuh the contact us link on the site. OK, now to Conner. this week has been very physically and emotionally demanding on all of us. Conner has had a rough time with this cold. Im happy to say that he had a fantastic night and slept all night. i took the oxygen off this morning, but traded it for something else. Yes, i cant believe it, but I put in a NG this morning. After attempring his first bottle in 12 hrs - i could only get 15cc's in and then the choking and choughing started. So i made the decision to at lea st put in the tube for the day and just tank him up with some extra fluids. I will be removing the NG tonight or tomorrow. im just hoping that i can get him over this cold. We are still continuing with our decision to not place the tube as a life susaining measure. I just cant watch him suffer with these bottles, especailly wehn he feels so crummy. I cried for about an hour after I put the tube in - i just hate seeing it there on his face- a constant reminder of this damn disease. after I was done sobbing I just cuddled with Conner on the couch and held his hand as he slept. He looked so incredibly comfortable (tube and all). I dont know waht the future holds (well actually I do) and it's just so scary. As I have said a million times over i just cant imagine how I can live without my beautiful Conner. i ordered Conner a Love Sac that we heard about from Conner's friend baby Elise in IL. I cant wait until it gets here next week. It's like a super comfy foam bean bag. It should be perfect for Conner since he's been sleeping on a regular beanbag for the past few nights, we are camping out downstairs while hes sick. These updates are a way for me to keep everyone posted on Conner's progress, but also my way to document my feelings and our life with Conner. As I have mentioned this is such an emotional hell. I have this beautiful little baby and I just never ever want to let him go. we just never know, one cold and that could be it for Conner. This disease can change so rapidly and he sometimes cant keep up. I do believe he will get over this cold, but who knows whats next. I have to do whats best for him, even if I would rather have him here forever. These are choices that no parent should ever have to make!

Sorry to report no real improvements. Conner has remained on the oxygen for most of the day, a short break this afternoon, but not too long off it. I think i got about 1 1/2 hrs of sleep all night i was just watching him so closley that i couldnt relax enough to fall asleep. We have been sleeping downstairs because thats where all Conner's supplies and O2 are. He has not had any fevers today which is nice, but still choughing and choking a ton. Now the other mega issue is feeding. Conner has never been a good eater when he's sick. But now you add that to the progression of the disease and it's an absolute disaster right now. i have managed to get 12 oz in him today - but that's beginning at 3am this morning. And i might add that it took about 1-2hrs to get each 4oz feed in. I really dont think he's even hungry, so i think i might back off a little. It's the nurse in me - counting every cc and every wet diaper - im so neurotic and now sleep deprived - so i feel like a basketcase. Brenden has been really curious about all the new equiptment. the first time he saw Conner with the oxygen - he got so upset - he was crying and frantic - i just told him that it was just a little air to help Conner breathe better, since he had a cold. I never imagined he would react that way - I just reminded him that it's not hurting Conner. Wow - another chapter in this soga. Explaining all this stuff to a 3 year old when I really dont get it myself. I talk to him all the time about Conner going to heaven to live with the angels - but it get's more real every day. I do just have to say that Conner is so cute and beautiful despite all this cold drama. just another reminder that our guestbook is still down - I just havent had the time to meet with Michael (Maryland Web deigner's) So feel free to send us messages through the CONTACT US link or direct email *******connersway@comcast.net******

Desiree

Conner myspace link!!

The last 12 hours have been absolute hell. when Conner gets sick, he gets sick so fast. He had a huge coughing fit last night and high fevers. We started him on some nebulizer treatments, around the clock Tylenol and Motrin, antibiotic, and Oxygen. He is really comfortable right now which is wonderful to see. He had a terrible night though. Oh, did I mention the insurance fiasco? Dont even get me started. It would take me a year to write about - im so wound up about it. For now Im just going to focus on my angel Conner and make sure he's comfy and cozy. I wish you cod see him - he's asleep in a bean bag - looking so sweet. He had a ton of trouble breathing last night, but he's much better so far today.

Desiree

Last night was a long night!! Conner finally fell asleep at 3 am and slept for 1 hr and was up again. This cold has turned into a real mess for him. He's got a really junky cough and fever today. Took him two doses of Tylenol and one Motrin to finally break it. He is resting very peacefully now - so hopefully he can get a few hours of sleep. This lack of sleep is reminding me of what it was like for the first 16 months of his life when he wasnt sleeping through the night. Boy am i beat today. I just hope he feels better soon - i hate it when he's sick. I have been working super hard on Conner's myspace page and it's looking pretty good. There's photoshows from our trip to Disney World, NYC, and our pumpkin pictures. Im trying to figure out how to add homevideo to the site - but Im a bit of a novice - so it migt take some time. I cant wait until i can hear his little giggle everytime i check the profile. Please take a look and let me know what yu think. i will keep everyone posted on this rotten cold - YUK! Good news is that he is still eating OK - I do have to use the sxn machine more than normal, but he's getting it down! Go to myspace.com and search Conner's Way

Desiree

http://www.myspace.com/connersway Look at Conner's myspace page!!!

Sunday was our first Pins for Kids meet. To explain a little about it... these wrestler's obtain sponsers and a certain dollar amount is donated for every pin the achieve. This year the Mannings and us are working together to spread the word and a face to Tay-Sachs disease. Dylan recently lost his battle with Tay-Sachs, and it was bitter sweet to see our dear friends today - minus one. Dylan is with us all everyday in our hearts, but we sure miss him! The Mannings have experience, they were involved last year when a very special young man Zach became a voice and strength for Dylan, as Im sure Dylan was for him too. (and stll is, from heaven) The matches were held at St. Marks highschool in Delaware. We met a few local coaches who may be interested in starting or possibly extending this progrm to other states like Maryland, New Jersey, and Pennsylvania. We are o excited to be a part os this this year and all funds raised by the wrestlers will be split and donated to the Leukemia and Lymphoma Society and the Tay-Sachs research initiative. I will have much more info available on our site as soon as the program has it's website launched. Conner has done pretty well despite the cold. He didnt sleep well at all last night, but he still has a pretty hearty appetite. So hopefully in a few days we will be done with this snotty mess. Conner's sitting right next to me sleeping well, so lets hope for a good night tonight. We have a busy week with many visitors and Brenden's first field trip to the pumpkin patch. Another reminder that the guestbook is temporarly down, so check back in a few days and keep leaving us messages!! We love them and read them every day. - I've been a bit lost with no new enteries over the past week :( Also, for my loyal readers - If this doesnt make any sense, I never proof read or spell check these updates. It just takes too long, so I just hope for the best.

Desiree

Here is the Mary Kay info... ladies order up Stephanie Lilly 443-763-0839 www.marykay.com/STEPHANIELILLY You must mention Conner's Way Foundation in order for the 25% to be donated to Conner's Way Foundation

Today Conner woke up with a runny nose and yucky cough. We have been hoping that Brenden wouldnt share those preschool germs - but such is life with a toddler. Tomorrow we are going to Delaware for our first "Pins for kids" match. I will know more details about it after tomorrow, but Conner will be the face to this years campaign for Tay-Sachs research. Last year they raised an astounding 8 thousand dollars and this year we are hoping for more. We have so much coming up, I have so many details to post. the first thing is pretty overdue. Anyone interested in ordering Mary Kay please let me know - we have a sales person that has worked it out so they will donate 25% of all sales to Conner's Foundation. I will post her name and direct contact info as soon as I can track it down amist all the papers in here. Also We are getting very near the date of our next event. Please get your tickets early!!! Well, I must get running - busy day tomorrow and i have some snuggling to do :)

Desiree

Just a quick note to everyone - we are working on the guestbook part of Conner's site. If your unable to sign, check back in a couple days, we love getting messages, so please stop back and visit his site again soon. We are busy getting ready for the November 11th event. Conner's doing very well. We just got back the pictures from Karen Clark. **********www.karenclarkphotography.com********** she has worked with Conner 3 times now and her pictures are amazing! Conner slept through the entire shoot, but the pictures are incredible!! Thanks Karen!! Brenden has been home from school two days this week and he's still couging up a storm. We hope he will be all better by friday.

We have been having a great fall so far! We visited a pumpkin patch this weekend, and Conner has been eating like a horse.

Just a quick update from us, it's 12:45 am so hopefully I will be getting to bed soon. The house is so quiet at night (hopefully, if Brenden sleeps through the night) some of my favorite moments with Conner is after everyone else goes to sleep. We have had the smae basic routine since he was only days old. We sit up every night together and cuddle, sometimes we watch tv, and sometimes we just sit there so I can watch him. Every second I look at him, i am reminded of what a beautiful creature he is, an absolute miracle. I must confess, it's not the "miracle" I was hoping for, because i really just want him to be healthy, but the gifts he has given me in the past 20 months are immeasurable. His life will be short, that we know; but every second is a miracle. I hold his little hand everynight and wisper I love you as he drifts off to sleep, right next to me of course, that way I can sneak a peak in the middle of the night too. We had a very nice phone call from Conner's friend Liz, all the way from Boston. We are so busy planning the Nov event and some other things. Conner's still doing well, we have had to use the suction machine a few times over the past couple days, but not too bad. He had a bit of a fever the night before last, but after one dose of Tylenol, he was on the mend. He's eating well and sleeping really really well 15 hrs last night - man that must be nice. Maybe that's the trouble, i should be sleeping right now - huh? Well tomorrow is Mary Beth's visit and weight day - so be sure to check back for the latest stats. Oh, remember all we are in need of donations for the silent auction - so if you have any items you want to donate, please let us know!

Desiree

Mary Beth just put our little love on the scale and he weighed in at an astonishing 24lbs 10oz, yes everyone thats almost up one pound from last week. I was stunned - i actually thought he may have lost a few ounces, boy was I wrong! WOW He's been a sleepy head all day. He got up at 11 and had a calorie packed pudding bottle and then he has been asleep since. - He even slept through the weigh in. Now I know, there's no nees to sweat if he misses a meal - he's packed on a little extra. We are pretty happy about his recent gain, this way if he gets a cold or has trouble eating a little, he has some reserve. So... Way to go Conner!!!

Desiree

We had a fantastic photo shoot yesterday, what a beautiful ay it was outside, so we hopefully got some amazing pictures. We have had a great few days. It was ironic, today as I put Brenden to bed, all 3 of us lay in Brenden's bed (Brenden, Conner and myself) I lay next to my two beautiful boys as they lay asleep. I found my self in a minute of normalcy. He it was, my family - what I had always wanted, my two baby boys. They looked so peaceful and beautiful, and after my one minute of escape I quickly halted back to reality and realized that all to soon, it would only be one. Physically of course, Conner will hold a special place in our hearts, our lives, and our memories forever. How ironic, how one minute you have everything you ever wanted, only to know that soon it would be taken from you and there's nothing you can do about it? All that said, it really was a beautiful moment, and one that I will never ever forget. Conner has really been having a good few weeks, so we are running with it - i will keep everyone updated on his weight this week :)

Desiree

Today was our very special friend Garrett's birthday - he turned 1 today and his parents were gracious enough to ask that in leiu of presents, donations were to be made to Conner's Foundation. We cant even begin to tell you how completly thankful we are for such wonderful friends like Michael and Lisa. So many people distance themselves for various reasons, but from day one Lisa and Mike have been there for us, even if it's just for some pizza together. They are very special to us and so is cutie pattotie Garrett. We spent the day celebrating Garretts birthday and catching up with friends. Conner was able to join us for the festivities, and Im so glad he could!! We have another photo shoot coming up with Lynette's friend Sarah Mattingly on Sunday which we are really looking forward to. For those who havent looked at the Soulumination site yet - please do, Lynette specializes in photographing special children with life threatning diseases and her spirit and her work is incredible.**********www.soulumination.org********** Conner is the very first child featured in the gallery. We actually got to meet Sarah for the first time in April when Lynette was in from Seattle. Sarah has also had the pleasure of working with our very dear friend Dylan who just recently passed away from TSD. Every memory we have with Conner is incredibly valuable to us and I wish I could take 720 pictures a day - thats one for every single minute of every single day. For those that know me well - I get pretty close sometimes. Anyway, Conner has had a great week, we havent used the suction machine in 7 days!!!! I ordered him some new flavors of Pediasure - and his favorite so far is Banana Cream - Yum.

Desiree

Well, our little guys is tipping the scales at 23lbs 15.5 oz !!!!! Yipee. We are busy with the prep for the November 11th event - so you will be getting you fliers soon. He's had a great couple days and hopefully many more!!!

Desiree

What a great milestone to celebrate. As Conner sleeps so peacefully, I just hold his hand and watch him breathe. With every breath this amazing little child takes - it's like a warm summer breeze, so calming. Conner has been doing pretty well, he was asleep for last weeks weigh in - so we skipped it. He's eating pretty well and only using the suction machine here and there. I think only 4 or 5 times over the past week. He is sleeping well and so far tolerating this crazy weather. We spent the weekend at Ocean City, exactly were we were one year ago when we learned of Conner's diagnosis. I just cant believe it's been a year. why does time seem to go by so fast when you really want to cherish every last second? I really want to give people a sense of where Conner is right now, so I will try to sum it up as best I can. Conner was diagnosed at 7 1/2 months and was really healthy. He sat up, rolled over, and even said ma-ma a few times. He began losing head control at 9 months and about that time and lost the ability to sit up and roll over by age 1. By 15-16 months he had lost most of his eyesight and the seizures began. Now at 20 months he has trouble eating, but still able to take bottles pretty well. He is on two seizure medications, and continues to have breakthrough seizures. He can still see lights and maybe some shadows. His hearing so far seems unaffected. He is virtually paralyzed with only slight movement of his arms and his head from side to side. Over the past month we have also noted a significant increase in clonus (tremmoring of the arms and legs) which is another sign of neurological deteriation. With Tay-Sachs its very difficult to predict the future. We are often asked what the life expetancy is, and the most truthful answer is we dont know. It may be a year or two from now or it may be tomorrow. Given that we have chosen to be very conservative and spare him any invasive procedures, he is likley to not survive the winter. The slightest cold for Conner could mean a severe pneumonia. But we try to not focus on those horrid details and focus on today. CHERISH YESTERDAY, DREAM TOMORROW, LIVE TODAY. Conner is the most precious gift, and I would never trade a second I have had or will have with him. He is what empowers me to continue. My very own angel.

Desiree

Well, it's 1:30 am on the anniversary of the date that has changed our lives forever. I sit awake and Im overcomed my such vast waves of emotion. I can remember every vivid detail of that horrible day and most of the few weeks that followed it. I have shed many many tears and smiled the most incredible smiles over the past year with Conner. at the time of his diagnosis last year, I wasnt sure he would even make it to this point. I am so incredibly blessed to have had this amazing little child in my life, and I look forward to every moment that we will share together in the future, how ever long that may be. every day that I look at my son, I am amazed at what he has taught me about life and myself. Im sure to never ever be the same. I used to say, before we knew that Conner had TSD, that I never want to look back years down the road and wish that I had done more with my kids. Working in Pediatric Oncology and Pediatric Intensive Care, I was constantly reminded of just how precious life is, and the cruel reality that it can be taken from you at any second. Brenden and Conner are such gifts and I love them so dearly, my house might not be the cleanest, and the bills might get paid late sometimes, but my boys and I are having a great time. Over the past year, we have come a long way and we look forward to the future and carrying out Conner's legacy. Today is sure to be a rough day for me, but one that I can spend cuddling with my sweet little angel Conner. Thank you to all who have been there to offer support and prayers over the past year - it has meant a great deal to us and our family. As we continue on our journey, we hope you will be there to celebrate Conner's life and help us carry out his legacy!

Desiree

just a quick update for my loyal readers, Conner is doing pretty well. He's been eating bottles well and we are only having to use the suction occasionally. He hasnt been weighed this week yet, so well see... We are one day away from our one year mark since Conner's diagnosis. Tomorrow (well today, it's 12:45 am) I am going on XM radio to talk about the foundation, Tay-Sachs, and of course my little star. We will be mentioning the benefit in November and hopefully educating thousands about Tay-Sachs screening. Im pretty nervous, but Im sure it will be great.

Desiree

Late last night we recieved some very devestating news about another child who suffers from Tay-Sachs. Alexis suffered from juvenile onset Tay-Sachs and underwent a cord blood transplant a few months ago. She had been doing very well and had even made it home to Ohio a few weeks ago after months at Duke. Alexis was 1 of 3 juvenile onset patients who got this pontentially groundbreaking treatment for Juvenile onset - TSD. We were all very hopeful that this would be an effective treatment for these kids (juvenile onset), it's with a very very heavy heart that I have to post that sweet little Lexi suddenly lost her battle two days ago. I never even got to meet Lexi, only followed her site and talked to her dad a few times. So please keep this family in your thoughts and prayers as they confront the most devestating loss imaginable. At the end of this post I will put her wesite, so please take a second to look at it! On a much lighter note, Conner has been doing pretty well and is upto 23lbs 11.5 oz, not quite as hefty as little Elise, but watch out sister - were getting there - lol. He's eating pretty well, good and bad. We are giving him Vanilla and Chocolate pudding in his bottles - which I think he's crazy about.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=alexismarkowich

the title of this entry is right from Brenden's mouth. He is just trying to get his days of preschool organized. He told me he has school on Wednesday, not Tuesday. We had a bit of a rough patch again with Conner last night. It turns out that I did count my chickens too soon. He was still able to take enough in, but a lot of choking with it. Hopefully today will be better. Our photo shoot keps getting cancelled because of this crapy weather - come on sunshine - our pictures await :) We have rescheduled again, for friday, so pray for some sun!

Desiree

We wnet to Deep Creek for the first time over the weekend and we had a great time. Conner has been eating a lot better - and we havent used the suction machine at all for 48 hrs :) We rented a boat and cruised the lake, we made smores at night, sat in the hot tub, and had a great time. Conner had a great time, he enjoyed the mountain air I think. I dont want to get prematuraly excited, but I hope we are over that little scare from two weeks ago. It was a very trying week and a half for us. I have always hesitated to discuss this topic on the updates, because people are so opinionated on the subject,.... but here it goes. We have weighed all the options and most of all Conner's quality of life and we have decided to not place a feeding tube - so basically that means when he is no longer able to eat - that will be the end of his journey here on earth. It was a very very very difficult decision to reach and we have been thinking about it every second of every day - and even more since our scare last week. Many parents of kids with diseases like Tay-Sachs do place a feeding tube, either GT (surgically placed tube in the belly) or NGT (tube inserted through the nose which goes to the stomach)This way the kids can continue to recieve nourishment. We feel that Conner's disease has progressed so much and so quickly over the past 6 months, that a tube just isnt the right thing for him. Believe me when I say it's a very heartwrenching decision, if were up to me I would place the tube and keep him with me as long as I could. By saying "up to me" what I mean is, if my decision wouldnt impact my son negatively. Unfortunatly, I think (know) that he will suffer regardless of what we do, and I just dont want to prolong his suffering. I wish there was a right and wrong answer and it was clear what the right thing is, but this horrible disease just dosent work that way. We have talked with many families about their decisions (most of whom have place a tube), and we completly respect their choices, we just know that this is the right choice for Conner. These kids often begin to have significant feeding problems between the ages of 18mos and 2 1/2yrs. They lose the ability to swallow due to muscle weakness and loss of muscle tone in the throat. They then also begin to have problems with aspirations (when formula is refluxed up and then enters the trachea (windpipe)) The aspirations can go on for a long long time, but sooner or later they develop into pneumonias and in most cases that is what leads to death. As I said, this was an incredibly emotional and terrible decision for any parent to make. On a lighter note... we have stared a blog for Conner which hopefully we will be linking to the website in the next week or two, things are just so busy. I aslo want to thank all my faithful readers, and if your wondering, I dont spell check these updates before submitting them, sorry - good for a laugh right? That one saying was supposed to be "count my chickens" not catch my chickens OOPS. We have been getting tons of emails and hits on Conner's sites and we love all of them! Keep sending!!!! We might not respond right away, but I do look at his site every day and we love getting messages and emails. So now Conner has this site, a Blog site ......http://connersway.blogspot.com/...... and a myspace page .....http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=105244615..... Im really new at this stuff, so keep that in mind. Things are settled down for now and i hope they stay that way for a long while!!

Desiree

Happy to say that Conner is eating very well. He had an OT appt this morning and boy did he impress her!! Cant wait to get him weighed next week - I bet he's racking on the pounds - really Im just happy with ounces. I got some amazing photos of Conner over the past few days - hopefully I will get to editing them and get them on this site soon. Our Sugarboo photobox came today - Oh my goodness - It is absoultly incredible!!! I first saw the box in a South Moon Under store in Rehobeth Beach - when I fist saw them I immediatly fell in love with it. So I surfed the net and eventually found the designer Rebecca Puig of Sugarboo designs. She made a custom designed box - just for Conner. I wrote this little saying that it displayed on the box: ........Eyes so fiercely blue, like an ocean wild and free His spirit so refreshing, amazing just to see A smile so truly captivating, even at first sight His skin soft like pearls, glistening in the light Life’s alluring mystery, an angel here to love His soul so brightly shining through the magical stars above ...... Needless to say - Im completly in love with it and I will cherish it forever! I also am slowly gathering some photograpgy supplies, and hopefully my little studio for Conner will be all set up in the next week - Im sure he's thrilled. He actually responds really well to the camara flash. showing off those incredibly bright blue eyes.

Desiree

Log in to view Conner's Blog with pictures!! http://connersway.blogspot.com/

Desiree

A lot of work pays off - Conner weighed in today at 23lbs 1.5 oz !!!!! It's still takes quite a bit of time and energy to get the pediasure in, but he's doing it. We had a nice relaxing weekend and even got to spend some time with our friends on Monday. Thanks to everyone for your prayers!!

Desiree

Conner has had a pretty good day today. So far he has taken 15 oz, wuch might be the most in the past couple weeks. We have just been cuddling and spending time together all day - can't think of anything better!! Lot's of seizures today though :(

Desiree

September already... Soon we will be nearing the one year anniversary of Conner's diagnosis. This is one anniversary that we certainly will NOT be happily celebrating. September 20th, 2005, the day our lives were turned up-side down!!! I remeber every horrid detail from that day. Looking back and reflecting, I remember thinking he would die tomorrow, I honestly didnt know how much time we would be given with Conner. I do have to say that I am so very happy just to have had the past year with him. We have shared so many amazing moments and made lots of lasting memories. But.. on the flip side we have had to sit by day in and day out and literally watch our baby die, an incredibly helpless feeling. I find myself with so many mixed emotions, I really only want what every parent wants for their kids; to grow up and be healthy and happy. Im am dedicated to if nothing else, making him as happy and comfortable as I possibly can while he is here on earth. We seem to have figured out a temporary fix to the feeding problems. I have to give him lots of jaw support, but he has been eating a little better - so we will run with it as far as we can. As we have learned in the past week, things can dramatically change in the matter of a few hours, so I will keep the website updated with all new info. I also forgot to mention in my past couple updates, that we have had Governor Ehrlich sign an official proclamation declaring November 2006 as CONNER"S WAY TAY SACHS AWARENESS MONTH IN MARYLAND. We have the document already and we are very very excited!! What a way to honor Conner and also raise the profile of this preventable fatal disease!! Thanks to Governor Ehrlich to lending his most appreciated support!!!

Desiree

One small victory in all this mess - Conner took 4 oz from a bottle this morning - it took a little jaw support, but he did it with almost no choking. Maybe it's all the prayers - so keep it up guys!!! He slept all night and also had another wet diaper this morning, I never thought I would be so excited over a little pee ? LOL Well, he's sleeping now next to Brenden on the sofa. They are watching some Elmo cartoons, and looking quite cute. Hopefully he can keep up the good eating for the rest of the day and beyond! I went to the grocery store last night and bought every kind of juice and sweet treat I thought Conner would like. So every day he gets to experiment with a new taste. So far the first juice-youart blend was not too big of a hit. Well keep trying!

Desiree

Another 4 1/2 ounces this afternoon without too much trouble!! It's was so exciting to see Conner eat and not choke! A sigh of relief. I dont want to catch my chickens, as they say, but he has had a great day!! We have been getting lots of email and phone calls - keep them coming!!

Desiree

Well, no improvements today. Conner has only taken 11 oz all day and that had to be syringed in. It seems as if his gag reflex is kind of hyper. He is gagging with every swallow. I have never heard of any kids having this - so Im not sure what the deal is? He did give us 5-6 smiles last night - which was magical - we had friends over for dinner and they also got to enjoy those sweet Conner smiles. He peed twice today - yahoo! (It's the little things right?) I will be updating his site more frequently now that we are having some issues, so please keep checking in. Thanks to everyone who has sent us emails and signed Conner's guestbook over the past couple days - we really appreciate all the prayers and warm thoughts!!!

Desiree

The past few days have been very emotional. Conner has been having increasing difficulty eating since last Thurday. He is getting a little dehydrated and we are using the suction machine with every feed, several times. He is going about 24 hour intervals without any urine output. He is having a lot of trouble swallowing and breathing during feeds. These issues are fairly typical with TSD and usually present around this age. Please keep our little guy in your thoughts and prayers. Right now we are taking each day for what it is, and hoping that he can get himself out of this. He is just having a horrible time. Conner is very content and peaceful when resting between feeds, but he has had a lot of seizures today as well. We are also struggling and hoping Conner will help guide us to make the right decisions for him. We just want to keep him comfortable as long as we can, until he must fly. We have also bumped up our hospice visits to twice a week for now. Today was a very emotional visit as we are forced to make some life altering decisions soon. Please say some extra prayers for Conner and our family tonight!

Desiree

I can hardley believe it - 19 mos! If only I could wind back the clock - Im not ready for him to get closer to 2. His eyes are blue and brighter than ever. What an ANGEL !!! We have had a rough couple days. Big brother Brenden started preschool on Monday, and came home Wed with a fever and runny nose (already) - well, now of course he has lovingly shared the snotty joy with the rest of us YUK! We are all OK, but little Conner has such a hard time. I have had to stop nursing Conner - which Im a little heartbroken about. He just isnt coordinated enough to breastfeed anymore. He has been taking a bottle well - until this cold. And so far he has been able to maintain his weight - 22lbs 10oz. We have had to break-in the suction machine - which I absolutly hated to do. It's a day I secretly hoped would never come. He is having a ton of trouble eating and choking since the cold on Wednesday. I keep the machine on the whole time he is taking a bottle and have to stop and use it at least 3-4 times. He's only taking about 6-10oz a day, so were beefing up the calories with some Vanilla nesquick (sp??) My hope is that this recent eating difficulty is related to the cold and all will return to normal; well as normal as things can be - in a few days. We also started Conner on Phenobarbital for increased seizures. He is still having several small ones, but they dont seam to bother him. Im hoping to get some recent pictures updated on the site next week - some are super super cute!! So please check back. I also want to say a HUGE thanks for everyone signing Conner's guestbook - we read it every day and the little messages mean so so so much.

Desiree

I know I just wrote a long update a few days ago, but a few things have been weighing on my mind since then... So, I decided to write some more. Uh, where to start? I think that I will copy a beautifully written poem called Welcome to Holland. WELCOME TO HOLLAND by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." " Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland. We are often asked how Conner is doing - I really never know how to respond. The fact is that are watching our son die a little more every day - how can you sugar coat that? I find myself always saying "he's good" or "He's fine" - but that's really not true - this is terrible. Every week that passes, and every month that goes by is closer and closer to the day he leaves us. We also find that many people we thought would be here supporting us and Conner have distanced themselves, and so many strangers are so loving, comassionated and involved. This has been a very difficult pill to swallow. We hear so often that people "just dont know what to say" - so Im going to address that right now. You dont have to say anything. There are no profound, claryifying words to fix this - just a simple touch of Conner's face or a grasp of his hand is so meaningful. Even for us to hear the simple phrase were "thinking of you" gives us the drive to keep going. Conner is a gift, yes he's dying, that cannot be fixed. But, he is here now and he is an angel. We have really recieved such a warm loving reception, please don't stop. We really do need the reinforcement and we need to know that our precious baby is making a difference for others - teaching them about unconditional love. We check his guestbook every single day, please just drop us a line - it really means more than you can imagine!!!

Desiree

Conner’s celebration of life benefit was last Saturday, and it was simply fantastic. Our dear friend Kara and Café Mezzanotte did a tremendous job planning the auction and festivities. Conner (and us too) had the pleasure of meeting many many new friends. The event raised just under 20,000 for Conner’s Way Foundation. We are very delighted to formally announce the opening of the Conner’s Way Fund within the National Tay-Sachs and Allied Diseases Association. Because of the money that was raised at the event, we are now able to accomplish this one goal of ours!! It is a minimum commitment of 10,000k to open the fund and will be surpassing that minimum! This is a special restricted fund that we have discretion over. We plan to allocate most of the funding to pediatric neurodegenerative disease research and the remained to education and prevention.. Our other big news is that we have formally requested that Governor Ehrlich sign a proclamation declaring November 2006 as Conner’s Way Tay-Sachs awareness month in the state of Maryland. We are really excited to the possibility of this major accomplishment! Over the next few weeks we will be working with the Governor and his staff to finalize this . Governor Ehrlich has been at every one of Conner‘s events thus far and has shown a great level of compassion and interest in Conner and our efforts against Tay-Sachs. We are really looking forward to working with him on this proclamation. We just got back from a week at the beach - where we had fantastic weather!! We started off our vacation on Sunday, we had to face our worst fears. We drove up to PA before heading to OC to bid a final farewell to a very special friend; Dylan James Manning. His family is truly an inspiration, and my heart aches so deeply for their loss of their son and angel Dylan. On Monday morning we headed out to the beach and the first thing we did was write Dylan’s name in the sand. Dylan’s daddy Brian asked us to do this, they were supposed to be heading the beach with Dylan the same week. I wrote it just high enough so the waves wouldn’t wash it away too quickly. I stood there for a while just watching the writing fade slowly, just as Dylan did from this earth. Dylan’s battle with TSD has finally ended now and he is on to his next journey as an angel. As you can imagine this was very difficult for Carl and I to do, as this is the future we will face one day soon. There’s just no words to express the pain there is in loosing a child. Our hearts and prayers will remain with the Manning family during this emotional time. Conner spent most of the days snoozing on the beach. We educated many people over the week about Tay-Sachs and we handed out a ton of Conner’s business cards. We stopped at a pottery shop in Rehoboth Beach and painted a beautiful platter with Brenden and Conner’s handprints. Brenden got to paint his very own cereal bowl while I finished up the plate. I think he is the next Picasso - ha ha. Well over the next few weeks, we are sure to be very busy catching up from our week of play! Conner’s nearing another milestone - he will be 19 months soon - hooray!

Desiree

We are very saddened to learn today that Conner's dear friend Dylan has passed away after almost 5 years of batteling Tay-Sachs disease. Dylan and his family have been so kind and supportive to us as we begun our journey in the same hell. They have done a tremendous job honoring Dylan's mission and educating others on TSD. We are constantly thinking of our dear friend and their entire family. So please add them to your prayers over the next upcoming day's, week's, and months, as they now must embark on the next part of their lives with Dylan in heaven.

Desiree

Conner and I just attended our very first Genetic Alliance Convention this weekend in Bethesda. We learned about several different diseases and met many many people. It's very interesting to me that even within such a group whose interest is genetic diseases some people were still outwardly uncomfortable approaching me about Conner. Many were just delighted to see a beautiful baby and came over to see him anyway. However there were many who could tell that there were significant developmental delay in Conner and were seemingly paralyzed by that. I feel that most of the time Im very approachable when it comes to Conner's disease and I really try my best to use these opportunities to educate others on genetics and Tay-Sachs. I do struggle, however because I dont want the Tay-Sachs to be what defines him. He is an amazing child who happens to suffer from Tay-Sachs, but he's so much more than this horrible disease. this is a child who has tought me to rise up and become a better person. This is a captivating young soul who is so innocent and sweet. I would hate for people to some day remember him as the little baby who had Tay-Sachs, because that certainly does him no justice. What I say to people who are uncomfortable and too shy to ask - is "bring it on" I am putting myself and our story out there in the open to pontentially help someone you know in the future. Please be willing to face your fears and emotions and learn about the various diseases that are killing our children. Conner is wonderful and I wouldnt trade a single second. Every day, with every person that takes the time to educate themselves we are just a mini step closer to saving these children. But - - -Lets CELEBRATE their lives while they are here. Life is much too short. These are our children, lets love them, lets hold them, lets male them count, and make a difference. The conference left me feeling invigorated and eager to get to work even harder. There is so much to be done to solve the mysteries and devestation caused by these various disorders. I was able to meet some very important people, researchers, parents, and advocates, and Im looking forward to building those relationships in the future.

Desiree

Conner turned 18 months on Tuesday, the same day as Christmas in July, We had a great time at the beach and Conner got to relax and nap in the sand (on a very soft blanket of course) Conner's is about the same since my last update a couple weeks ago, no significant changes. We are super excited about our next benefit - Celebration of Life August 5th. We visited the restaurant last Friday for dinner and to sneak a peak at the layout. It looks like it will be amazing! We also wanted to thank Ryan McGill for providing us with 3 amazing poster sized portraits of Conner for the benefit, they are simply captivating! www.BigIdeasBigPrints.com Thanks Ryan!! I am also beginning to work with Dr.Blitzer at University of Maryland to do some Tay-Sachs education for medical students and genetic counseling students. This is just the first stepping stone on my crusade, but one that Im really excited about. I am also hopeful that we can reach out to OB/GYN practitioners in the area and teach them about Tay-Sachs and the preventitive screening that is available. We are lucky in Maryland that we have two labs right here in Baltimore that offer enzymatic Hex A assay's. Kennedy Krieger and also Univ of MD. For those who do not know, the enzyme assay is really the gold standard for Tay-Sachs screening, it will identify all carriers as opposed to the Jewish panel which screens for several different disorders, but for Tay-Sachs is only capable of identifying 3 mutations. Keep in mind there are over 100 different genetic mutations discovered for Tay-Sachs. As I was reading in our dear friend Elise's website, people are now beginning to recognize that Conner is different than other children. We used to get smiles and comments all the time about how beautiful he is. Now we get some stares and we know what people are thinking. It's tough to know as a parent your child is sick, but we were able to sorta hide it for such a long time because he looked so healthy. Now that he is beginning to look sicker, it really hurts. I guess we can use these opportunities to educate strangers on the hidden danger of this devestating disease.

Desiree

We just got back from a week at the ocean and boy am I glad we were there before this horrid heatwave!! We had incredible weather and Brenden and Conner got to enjoy the beach almost every day. Just something about the ocean breeze to calm everyone down - even Conner's wild older brother. Im happy to say that Conner is doing really well on the Valium. He is requiring less than we initailly expected - which is always good. He continues to have some seizures through it, but we have not seen any of the dystonic (spastic) rigid episodes that were giving him discomfort. We are excited that Conner's next event is coming up - August 5th in Severna Park. We had the opportunity to spend some time with our new dear friend Kara on Saturday (she's planned the entire event)and Conner loved every minute of that. Conner and Kara seem to share a very special unspoken bond - it's very touching to see a stranger so moved by Conner's Way. Well I guess I cant really say she's a stranger anymore, but a very special amazing soul who we will forever hold near our hearts. Another struggle we are encountering is the beginning of feeding difficulties. This is a very very very difficult thing, especially for me, because Conner has mainly been breastfed up until now. He is having more and more trouble with nursing and beginning to choke when trying to eat. This is so emotional for me because I value so much the entire nursing experience I have shared with Conner. We have had this amazing bond and special closeness and it has been something so special between the two of us. He is nearing 18 months old on the 25th, and I am getting ready to stop nursing. This is one of those things that I must put what is best for Conner before my own feelings- as much as I hate to stop nursing. Im still going to let him try once a day for a while and see how it goes - if nothing else I hope it provides him comfort and I hope somehow he can still feel the closeness we share. Im sure this is more than most people want to know about - TMI right? By writing these updates - it allows me to describe how Im feeling and provides me with a much needed outlet. Sorry guys. OK, now for some other news - I ask all of those reading this update to please pray for the Manning family. Their son Dylan is nearing the end of his journey with Tay-Sachs at the age of 4 1/2. He is such an amazing little boy and his family has been a wonderful support to us in our fight as well. He has the most amazing family who have done an incredible job loving him and caring for him. He will be joining the angels any day and we think about him every second - so please keep them in your thoughts and prayers. Well I guess I should go so I have something to write about when Conner turns 18 months old next week. Very exciting!!!

Desiree

How time flies!! 17 months already, WOW. We have made the decision to start Conner on some seizure medication around the clock. As I wrote in the past updates, his seizures have been picking up and making him a little uncomfortable, so we felt that it was time. Whatever it takes to keep him as happy as can be! Our new hot tub is up and running, but the weather has been so terrible the past few days, we havent had a chance to get Conner in. I just know he's going to love it! We cant have the water temperature quite as warm as I would like it, it has to be 98 degrees for Conner. He had a small tough spot with eating last week, but he seems to be eating fine right now. One day at a time!

Desiree

We had a marvelous time visiting NYC this past weekend. Carl spent some of the time working, but we managed to have a wonderful time as a family. Conner had a great few days, and enjoyed NY so much. It was remarkable to see people walk down the busy, bustling streets of New York City and take the time to look in at Conner in his stroller. We heard so many comments as we walked by about what a beautiful baby he is, meanwhile these people had no idea of the tremendous tragedy that surrounds his sweet soul. We took in the scenes of Central Park, FAO, 5th Ave, the Statue of Liberty, and Ground Zero. I have to say that visiting the site where the twin towers stood was such a humbling experience. I focus so much on the future loss of Conner and our tragedy that it’s easy to forget the world around you. It was very emotional seeing the Fathers Day tributes from the children who lost their fathers September 11th, 2001, and knowing that the 5 year anniversary is right around the corner. It was amazing to see the paintings that these children had created, and the expression of there visions, recognizing their tremendous loss. I often wonder which is worse, life taken quickly without warning, or months of waiting and watching for the all to certain fate we soon will encounter. Although we have had to accept Conner’s diagnosis and disease progression, I have days that I just can’t imagine my life without my beautiful son. I worry about Brenden and the emotional scars this trauma will leave him with. The past 2 months we have seen a great deal of change in Conner and it’s been so difficult. He smiles less and less and is loosing a great deal of muscle tone. His seizures are increasing and I hate to admit, even to my-self, that I see him slipping away. There is a blankness in his eyes that just rips my heart to shreds. I’m certain that his vision is just about gone. I find myself in tears just typing this update. I try so hard to keep it together, but sometimes all I want to do is fall apart. I know that I cannot change the future, and I try to focus on the wonderful time we have with Conner, and I do mean wonderful. He is truly an angel, and I miss him so much already. He is nearing his 17 month birthday and big brother Brenden will be turning 3 at the end of the month, so we are sure to have a busy few weeks. I also want to acknowledge Kara Landry who just a few weeks ago was a complete stranger to us. We had a chance encounter at the beach, just by her house in Crownsville. When she learned of Conner’s diagnosis, she decided to jump right in and help out. She has taken the lead to organize a benefit and fundraiser for Conner to be held August 5th at Café Mezzanote in Severna Park where she works. The staff and Kara’s friends have graciously donated their time and energy into making the event a huge success. I will be posting event details on the fundraising page in the next week or so. Its so incredible and meaningful to know that Conner has touched so many people’s lives in his short life already. Sometimes, new and wonderful life long friends come along when you least expect it – Thanks Kara!!!

Desiree

Conner had his first significant seizure today which lasted about 10-12 minutes. Even though we were prepared for it, it was still pretty frightning. After some seizure medication, he came out of it just fine. He has been having a tough time with irritability latley, which is so difficult. His smiling has also diminished quite a bit. He was the happiest baby before the disease started to progress. We went to Kings Dominion on saturday, and both boys were fantastic. Conner had the best day he has had in a long time - maybe the fresh air? We are also tagging along with Carl on his buiness trip to New York this week. We are very excited to spend the day cruising around Central Park and Brenden cant wait to go to FAO Swartz.

Desiree

The Spring Fling Dance was a success. We wish to extend a tremendous thank you to Scott and Jenn McMillian for organizing and throwing this event to help raise money for Conner's expenses and our research goal. We raised just over 3 thousand dollars at the dance. We again were very pleased to have Governor Ehrlich and his parents joing us for the event last night. Governor Ehrlich has shown us such compassion and genuine interest in Conner and our live long legacy for Tay-Sachs research and future prevention. This by far has been the toughest couple weeks that Conner has had. He has been showing some increased seizure activity and further visual impairement. He has had several episodes of extreme irritability which as a mother is just heartbreaking. He did smile a few times tonight which was wonderful to see. After several months of solicitating hot tub dealers for a donation for Conner and also attempting a Make-a-Wish we were ultimalty unsuccessful. Several other families of children with Tay-Sachs and other neurological disorders reccomended getting a hot tub. A hot tub will offer Conner wonderful physical therapy and tactile stimulation and muscle comfort. For those who dont know, touch is the only sense that Conner will not lose. So today, Carl and I decided that we have waited too long hoping for a donation, and we decided to purchase one for Conner. We hope to have it installed by next week and we cant wait for Conner to start enjoying it. He loves the warm bath tub, so Im sure he's going to love it.

Desiree

We had a special night. Carl and I have been bowling on a league for St. Johns church to help send the youth on a trip. We are not members of this church, but Carl enjoy's bowling. Tonight at the final party, we were presented with a donation for Conner's foundation. We are so thankful that these wonderful people took the time to learn about us and our super sweet Conner. Conner had a great wknd, although it was so hot, we were stuck inside. We have been working with him on a special black light mat with special visually stimulating toys. I wish I had better news for everyone, but it looks like his vision is deterioting pretty rapidly. Im confident that he still see's, but much more limited over the past couple months. His hearing is still sharp as a knife. As you can, or maybe not, imagine, this vision loss is so difficult. He is still responsive to us, but it's just a precursor to the inevitable. I just keep telling myself, one day at a time. We just love every moment that we get to spend as a family. Brenden loves to hug and kiss Conner every day, and if he cries, Brenden is quick to ask him what's wrong and re-assure him that everythings o.k. The sweet innocence is so refreshing. Well, just wanted to update everyone and say thanks to those at St.Johns!!

Desiree

I must admit, Conner is doing better at this age than what we had initially expected when first diagnosed. He is still able to nurse and eat baby food, his seizures remain minimal, and he is still smiling. Although the devestating effects of Tay-Sachs are clear, he remains so strong. Conner has not lost all head control yet, so he still lifts his head and looks all around from time to time. His vision is definatly diminished, but he really enjoys looking at lights. He is the guest of honor at his next benefit - June 3rd and he's very excited!! We are also happy to report that he was featured in his 7th news article, the Arbutus View, a very nice story!

Mommy

We went to the Orioles/Red Sox game tonight. This was a very special night for us. Carl, myself, Brenden, & Conner were up close on the sidelines of the field for batting practice. The boys had their Red Sox jerseys autographed by the players and got to meet Kevin Youkilis from the Red Sox and Jay Gibbons from the Orioles. Brenden had a great time working out just like the real ball players. Conner also loved the attention and especially the big bright stadium lights. Kevin Youkilis deserves a huge thank you for making tonight possible, we had a blast. We also need to say thanks to Karen Clark of Karen Clark photography for being our personal photographer for the event. These memories will last a lifetime through her amazing pictures! I will be posting pictures from the game in a few days. While we were at the game tonight - all in our Conner's Way t-shirts, we had the opportunity to educate many people on the devestating reality of Tay-Sachs.

Desiree

Conner has had quite a busy month so far. We are expecting his Soulumination photos to be added to the gallery at DC Childrens later this week, and we can't wait to go see them. Also a friend and photographer, Angie H. who has been shooting Conner for several months now, is opening her own studio soon. She is dedicating the play area in the studio to be named "Conner's Corner", in honor of Conner. She has been a big help to us, blessing us with so many wonderful photos of Conner and Brenden, and helping us educate the world on TSD. We are very excited for Angie and so touched that Conner has made such an impact on her. We are looking forward to also meeting Kevin Youkilis from the Red Sox next wed at the Oriole/Red Sox game at Camden Yards. The boys both have their Red Sox jersey's all ready for autographs!! Conner is still cutting his molars, but he is sleeping a little better. Every once and a while we even get a crinkle nose smile. We also want to thank Jen & Scott McMillian for taking on the task of a fundraiser for the foundation - Coming up June 3rd. They are doing a great job.

Desiree

Over the past month we have been very fortunate to have some amazing photographers work with Conner. Some of which include Connie Groah of Barefoot Photography and Karen Clark of Karen Clark photography. The images the captured of Conner and Brenden were simply beautiful. I wish to extend my sincerest thanks to both of you!! We also had a very unique opportunity to work with Lynette Johnson from Soulumination based in Seattle. We are very honored to announce that Conner's story and photographs we be added to Lynette's gallery which is currently being displayed at DC Childrens. Lynette has a non-profit foundation in which she takes captivating photographs of children with life threatning illness. She traveled a long way to open her gallery and made special time to meet and photograph Conner. We hope that Lynette's work will continue to be displayed all over the country. Conner makes such a handsome addition, even though he was pretty grumpy for the shoot. Thanks Lynette. To visit her web site log on to: www.soulumination.org As for Conner, he's doing really well! He is still eating well and gaining weight - up to 21 lbs 15 oz, hefty fellow! He has 8 teeth and is cutting his molars, which has made for a ton of sleepless nights!! He has good days and bad days, mostly good. We are still blessed with many many smiles. Although he is beginning to lose head control, he is fighting it so hard. He gets up on average about 6 times a night, so we are all very sleepy! That said, I never get tired of looking at his sweet face, even in the middle of the night. As soon as he sees me he just smiles. He has a visual assessment this friday, but as far as I can tell he still sees quite well. Thanks to everyone for your continued prayers!

Desiree

I cant believe how time fly's! I love you more now than I ever could've dreamed! Conner is 14 months old now, as the disease progresses, it gets harder every day. Conner is slowly losing more head control and muscle tone. He still smiles a lot, but it takes a lot more work to get him to giggle. I am happy to report that he continues to nurse well and eat baby food without too much trouble. The seizure activity is very minimal and not interfering with his quality of life at all. He just got a new swing - which he adores! Overall he's doing well and brings so much joy to my life! Everynight when I put him to bed, I lean over, kiss him and wisper "I love you my angel", and he smiles - he's just so sweet!!!

Mommy

Conner had his very first trip to Disney World and first airplane ride. He was wonderful, and had a very magical time! He still entertains us all with his smiles and belly laughs. Sometimes we wonder what he's thinking; he finds the strangest things so funny. Over the past month, unfortunately he has lost the ability to roll over and has increasing difficulty keeping his head up. He remains very strong willed and we work with him all the time to keep his muscles as strong as possible. Conner is truly our angel, a gift from above! No matter how short his time on earth is, he has given us a lifetime of love.

Conner turns 1 today, and what a wonderful milestone it is for him. He has a special cake I made him and lots of presents and prayers for many many more birthdays to come. He has cut several more teeth in the past month - the total is up to 7!! We're so proud of him, even though all that teething has made him a little grouchy. Every day he amazes me with his energy and smiles. He truly is the best gift I ever could have received. The day you were born was the single most amazing wonderful day of my life. As I watched you emerge from my body, so small, so miraculous my heart instantly melted. I reached down and pulled you right to my heart and I have been utterly in love with you ever since. I remember so vividly, what you felt like, what you smelled like, and how precious you are. The bond we share is such a special one. When I sit back and reflect over our first year together, I remember many sleepless nights, your first tooth, your first smile, your first crinkle nose, your first cereal, your first belly laugh and all the other wonderful first's. It's so hard for me to think of the first's that you will never get to have. The simple things you have blessed me with in your first year will remain in my life, my memories, forever. Just know that I will go to the ends of the earth to protect you. One day you will get to be my angel from heaven, my savior, until that day, I'm dedicated to being yours. I know that even though one day you won't be physically here with me, you will never leave my heart and soul. You have forever touched me and made me a better person. I love you bunches, Happy First Birthday My Love! I Love You so much - all the way to the moon and back!!

Conner turned 11 months old today on Christmas. Sometimes I find myself staring at his small little hands and I feel so blessed that I have been able to hold them. His fingers are so chubby and his knuckles have such perfect dimples in them. Everything about Conner is so special and amazing. We have decided to stop the treatment with Zavesca. Conner's Tay-Sachs has been progressing fairly rapidly over the past few weeks. Unfortunately he is having trouble rolling over and is unable to sit unassisted anymore. Despite these obstacles he is still lighting up our lives and our hearts with his overwhelming spirit and endless smiles. He is so innocent, and unaware of the tremendous tragedy this disease has brought. Conner's first annual benefit was held 12/17/05 and he was quite the star. He said hello and smiled for over 300 people that night, including the Governor and First Lady. Conner has also made the front page of two newspapers, and been featured in two others.

Conner turned 10 months old this past Friday, and he is getting so big! We are on week 3 of Zavesca, and so far so good. Although he hates the taste, he is being a real trooper. He is trying so hard to crawl and babbling up a storm. Conner loves his physical therapy and exercise sessions. This will be Conner's first Christmas, so it will be a super important one! We have the house all decorated, and he loves to look at the lights. Our local newspaper is doing a story on our little star, he's really excited.

As the time goes on I just miss Conner even more. I just want to see his face and hold his hand, maybe sneak a kiss, just one more time. This week is going to be a very difficult one for our family. All in one week we will celebrate two events, of course "celebate" is not what I would say to describe the second. First - we get to celebrate Conner's 2nd birthday this thursday... without him. I just cant believe that just one year ago he was so incredibly healthy still. He was smiling and able to stand in his walker. And now he spends this year in heaven. If Im soundng a little wacko - I am just so mad right now. Stages of grief...right? I just want him here with me, I want him to make a mess of his birthday cake and rip open his presents, and do all the things he never could. On Wednesday night we will be attending the Pins for Kids event in Delaware. We are so thrilled to be a part of the program this ear and the kids are doing a fantastic job!!! Im sure it will be difficult, because the first match we attended, Conner was with us. None the less, I think it will be a great way to honor Conner the night before his birthday. So When Friday rolls around, it marks the two month mark from Connner's passing. This has by far been the lonleist two months of my life. The entire experience of losing a child is very isolating, but I just ache for him. There is a part of me missing - and I will never get it back. While I sit here mad and angry, and sad, I also cant help but let a smile sneak through from time to time. I think of him so often and he always makes me smile. We had 22 incredible amazing months with sweet Conner - i just want a million more. Those of you who knew Conner when he was healthy really know what Im taking about - he had this sorta prescence about hi, and so much expression in his face. Brenden made a face last night, and for a brief second I saw it - it was Conner's eyes - the expression was his. Please keep us in your thoughts this week! I spoke to the medical students at University of Maryand last week and told them all abot Cnner and our experience with Tay-Sachs diease and Conner. I hope that they gain some new perspective on the reality of such devestating diseases, and I hope they now possess the knowledge to prevt this tragedy for happening in the future for their patients.

Desiree

Memorial services will be held at St.Augustines Church, Elkridge MD Wednesday, November 29, 2006 at 4:30 pm Memorial Wake will take place at our home - where our fondest memories of Conner surround us, immediatly following the church service. Wake will be from 6-9p.m. In leiu of flowers - donatons may be sent to National Tay-Sachs and Allied Diseases Assoc 2001 Beacon Street Suite 204 Boston, MA 02135 Checks payable to NTSAD with Conner's Way in memo section or in an accompaniing note