Hi ^Conner^, Brenden, Desiree, and Carl,
How are you guys? Miss you!
Just want to fill you in on an aspect of my day off, today:
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Today, Liz and I spent the day at the NTSAD HQ and met with Sue Kahn and Kim. Among other things, while with Kim we drafted a letter to Massachusetts' Governor, Deval Patrick requesting his assistance to create a Tay-Sachs Awareness Month here in MA!
The letter is signed, sealed, and in the mail along with some informative media, an NTSAD shirt, and some of ^Dylan's^ 'JUSTBELIEVE' bracelets.
Hopefully we will hear back from the Governor AND get some positive news and results! Liz and I may also do some media outreach kinds of things, too...
We're trying, guys, we're trying...
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Love you,
Miss you ^CONNER^, Buddy!
Becky
Becky Warren 7/21/08
Hey Little Man - I am so proud to read your Mom's strength as well as your Dad's - they are incredible. The legacy you left is what others dreams of one day being able to do - and many can't in their lifetime. You did it with the very little time you spent earthbound. Are you spoiling your little sister and telling her all about the family ?? Just how she can smile and get away with almost anything ?? If she is even a day late from her due date - I guess we know who to blame :oD Hope all goes well with the house prepping & clean-up - Sending Love to you and your family !
Love,
Tric
Tric 7/09/08
Dear Conner,
How beautiful you are.... much like my nephew, Kaiden Lear. K-man was diagnosed in late March and your wonderful mom left a message on his CB page. I pray for all of the angels here on earth who have come into our lives, if only for a little while. Keep smiling for your family!!! Let me know if you need anything at all!
Luv & hugs,
"Aunt Shell"
Michelle Carter 6/24/08
Always on my mind. I think of you everytime I hear the church bells ring!!
shella 6/03/08
Hey Conner _
long time no sign in - I do think of you each night and shout out to you in my prayes. I knwo you are watching over the family & playing with someone - who we will meet in a few more months- make sure to spoil well - we know you are such the big brother - She is lucky to have you both. Send my love to the family & keep them resting well !
Love, Tric
Tric 6/03/08
So sorry to hear about your lose. As I sit here ready all your logs about Connor the tears are streaming down my face. I found your website when I was searching for information about fanconi anemia. My 18 month old niece and the love of my life was diagnosed with it yesterday. I dread the heartache and pain that my family will face with all the upcoming decisions that will need to be made. Our Lily, like your little Connor,is the light of our lives.The thought of living without her seems unbearable. I hope you the best with your new little baby and that you will have many years to come that will be filled with joy and happiness.May god bless you in all your efforts to fight the horrible disease that took your baby.
Lori 5/23/08
Good morning Desiree,
I'm sorry days like Mother's Day are so hard... I was thinking of you and all other Moms, particularly Moms of Earthly and Heavenly Angels, on Sunday. ((( HUGS ))) to you.
Brenden is such a sweet little boy - I'm glad he brought joy into your day!
Hooray, too, for baby girls! Liz and I have been wondering how things are/were, but weren't sure if we should ask. Congratulations, Desiree, Carl, Brenden, and ^Conner^. WE LOVE YOU!
Kudos to Governor Ehrlich, and I am really excited to know that, not only did he wear ^Conner's^ bracelet for such an important occasion, but also that it will be immortalized in his painted portrait!! COOL!! I'd love to see a photo (or two or three) of it when it's ready...
Thinking always of you,
Love,
Becky
Becky Warren 5/13/08
I hope you had a very nice Mother’s Day even though I know it was hard for you. I was thinking about you at Church when the priest gave a blessing to the mom’s and especially to the ones that lost a child. I planted my daisies this weekend. I think of Conner and how precious life is (and give my boys an extra hug) whenever I look at them. Thanks again.
Laura 5/12/08
Hi Desiree, Its funny you signed Molly's guestbook, I have been thinking about you today. I guess Mother's day makes me think of all the mothers who have lost their precious children. I have not yet congratulated you on the baby girl either. I will be sending some bows your way. Im sorry I have been so quite lately, I have just been extremely busy so I never take the time to sign guestbooks. Miss Molly keeps me on my toes, but she is worth every bit of it. Big hugs to all of you.
