Saturday, June 7, 2014

One Person, One Moment, One Child at a Time...

Dear Gavin,

God, I miss you.  We miss you.  It's still hard to believe that you're gone.

Yesterday afternoon, your little brother complained of a sore throat.  Not like him - he's never had a sore throat!  Then he complained that his neck felt stiff.  That was enough for me to call the pediatrician.  I took his temperature and it was fine.  By the time we got to the doctor a few hours later - it was 103!! My heart dropped - all I could think of was you.  The rapidly rising fever - the seizure - the brain death. I wish I could say that that experience with you in the emergency room has made me worry less about seemingly minor illnesses - but it doesn't.  When Brian has symptoms - I fear the worst.  Every single time.  I need to calm down.  I'm sure it's all part of the process - so I am nice to myself and don't bother to beat myself up.  Brian ended up having some kind of virus and, with Tylenol, he's feeling a little better.  He spent much of today curled up on the couch. When I told him he'd miss two of his friends' birthday parties this weekend, he took it like a champ.

Your little sister turned 27 weeks today!!  She is such a sweet baby, Gavin.  She reminds us so much of you and Brian - calm and happy and so easy.  She's very close to sitting up independently - which, as you know, is not something we take for granted!  Because of you, we appreciate every stage of her development.
Tonight as I put her to bed awake and listened to her talk herself to sleep, it was like listening to you all over again.  I know you can see her - I know you're around her - and I believe that you met her before she arrived - but I still wish you were here to enjoy her like we do.  And I wish you could be here for Brian who misses you terribly.

As you know, Brian still sleeps in your bed!  And every night, as you know, we pull the invisible string to say goodnight to you.  All three of us - always.  We have no intention of kicking Brian out of your room - he can stay there as long as he wants... needs... has to.  He doesn't even call it "his" room - it's "Gavin's room" - and it probably always will be.  This little boy clearly knows what makes him feel close to you and why in the world would we deny him that?  The room looks *almost* the same. Brian has added his HUGE collection of Angry Birds and other stuffed animals... his books... his Tee Ball trophy and team picture... and a lego table.  The dresser is still filled with your clothes. The closet is, too.  We're ready to let it go... but not.  We want to... and we will... but not yet.  And that's okay.

But there have been many, many things that we have parted with.  Has it been easy?  Of course not. But it has brought us great joy to know that things that were yours are now helping other children... making them happy.  Part of your sweet and giving spirit is attached to each of these items - so we feel the recipients are not just getting your things, but a part of you.

Recently, Hope and I brought your wheelchair and your special needs car seat to duPont so we could donate it to the wheelchair clinic.  We knew that Denise would know the perfect people to match them up with.  We trusted her to let us know... and Gavin, she did just that the other day.  

Daddy and I cried our eyes out when we read the following email from her:

Hello my friend…

Well, I was made extremely happy today and this will absolutely make your day as well. By the grace and timing of God, we were able to donate Gavin’s car seat today! Random call from Ortho today asking if I had any car seats for a 9 yr old child with CP who has been trying for over a year to get a car seat. The family has been literally squeezing him in a commercial car seat that is severely inappropriate.  I said I would be happy to see him to see if he’s size appropriate for the Britax car seat that I just recently had donated from you!

This family was in tears when I told them about how you just recently donated this car seat. I talked about the amazing kid that used this car seat and his awesome mom who thinks mostly about others and how she can help others with their struggles! They were sooooooo appreciative of the carseat and soooooooo thankful and just were beside themselves with joy. You were their blessing today – you helped them so very much. I greatly appreciate your kindness and I know this family appreciates it so much more.

So again, Super Gavin came to this little boys rescue and provided the family a means to transport him safely. Their little boy uses a tilt in space wheelchair and does not walk or talk. His family is also very loving and caring and as I said, they were in tears… both mom and dad and the Spanish interpreter.

So thank you very much and I’ll keep you posted about Gavin’s wheelchair.


Gavin, you continue to change the world... one person, one child, one moment at a time.  
We love you so, very much.  We miss you even more.



  1. Thinking of Gavin tonight, from Atlanta!

  2. I am sitting in work and its 02.50am. Explaining to my workmate all about SuperGavin and how amazing he is. I am currently alternativly bawling and smiling. It amazes me how you all keep so positive. I am sure you have your moments like the rest of us but you stay so strong. Hope and Brian are so gorgous and we love hearing about them over here ( wales uk). My son Spike is always asking to see photos of Super Gavin and his little brother Brian. He calls Hope "the ickle baby" . Well got to go. Patients to see.

  3. What a great blog. Thank you for posting this. It is amazing to follow the story of Gavin, Brian, and Hope. You have a wonderful family and Brian is so special. I hope I am calling him by the right name. Thank you and God bless all of you.

  4. It has been a rough week here, with saying "good-byes" to our special needs son's middle school teacher & staff of 3 years, then our pastor & family (after 16 years and now assigned a new Church). I feel like I've been in tears for days...and THEN, I read your new post!!! The tears keep flowing...some bittersweet as I hear of sweet Gavin and how he just keeps giving & giving. How can we not love your babies...and their Mommy & Daddy! Hugs.

  5. Found your FB and blog a few nights ago. Cried my eyes out til 4am. I'm so so very sorry foryour losses especially Gavin. He was a beautiful strong boy and now he's a beautiful strong boy guardian angel. Its completely ok to not get rid of Gains things. I think bu are so strong. I have 5 kids, my 34 month old has Soiba Bifida. We did sirgery on him when he was still in my tummy at 22 weeks in utero. I almost lost him and for some reason Gavin reminded me a lot of my son.. they are happy and strong no matter what. I'm crying as I type this Bc I want to say so much but can't find the words. My heart breaks for you and your family. May God Bless you and may Gavin continue to watch over his brother & sister. I bet she sees him all the time. I'm praying for your family


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