Thursday, September 19, 2013

The Gavin Box...

The grief is getting harder.  For me... and, to my surprise, for Brian.

Maybe it's the birthdays coming up that are getting to me.  Darcy's is this Saturday (she would have been 3) and Gavin's is next week on the 29th.  I didn't expect to be triggered by a birthday - but here I am - in puddles of tears much of the day.  And at night, trying to erase images and memories from my mind just so I can sleep.

And Brian.  Each night since Gavin's death, laying in Gavin's bed where he chooses to sleep, he wants me to tell him the story about why and how Gavin died.  I have faithfully done that every night and, typically, he is content and goes to bed.  But the other night, something changed.  Suddenly he wanted to talk - and, through tears, he tried to tell me what his last words were to his brother.  He finally was able to get it out on the third attempt - it was that important to him to express it to me.

From the outside looking in, one might think that I might have been crushed by that - that it might have been too much to handle.  But I can tell you - I saw Brian's expression of grief as a gift.  I'm grateful that he opened up... and felt privileged that he trusted me to share what he did.  I know if Ed had been sitting with him, he would have opened up to his Daddy as well.  It was beautiful to witness... but heartbreaking at the same time.  Our hearts break for Brian and, truly, we'll never know how he feels. 

So the timing was perfect for Brian and I to head back to DuPont... Gavin's hospital... for grief counseling today.  I had a private session with Hugh, the grief counselor at the hospital and Brian was lucky enough to work with Miss Jenn again - the Child Life specialist who was there to help him when Gavin was dying.  I dropped Brian off with Jenn and headed to the elevator to get to Hugh's office. The elevator door opened and standing in there alone was Dr. Raab, Gavin's very first doctor at DuPont. I'm always so happy to see him - he saw Gavin through a lot and has been with us on this journey since Gavin was two months old.  And it makes me feel so good to see people that have a connection to Gavin.  After one of his great hugs, I made my way to Hugh's office.

My session was fine.  I approach this knowing very well that there's really nothing ANYONE can say to make things better... or different.  But having a place where I can dump my feelings - however irrational or bizarre they may be - is helpful.  When I was through dumping... I went back to Child Life to fetch Brian.  I found him playing a rousing game of air hockey with Miss Jenn.

Jenn showed me what they worked on while Brian played with the toys in the Child Life center (many of which your generous donations could have bought!!)  She had asked me to bring in a few photos - of the boys together... alone... with us... etc.  I, of course, went a bit overboard.  I probably brought in 30-40 photos and tried to put notes on the back so she could have a reference for a conversation starter. I'm actually really glad I sent so many photos because Brian was able to choose his favorites for his projects - and I loved seeing his choices!!

First they made special pages that we could hang up at home.  Brian chose the paper - and the photos.
Then, Jenn had him make a special "Gavin box."  She said it could be a box where he could put things that reminded him of Gavin and it would be something special between the two of them.  
Brian chose a lot of favorites to place in the box - our "Super G" family photo from Disney... a picture of him with Gavin on the beach... one of him pushing Gavin around in the driveway as we waited for Gavin's school bus... the two of them drawing...
...a photo from the first time they met each other after Brian was born... Gavin with our beloved Miss Sara... and the two of them taking a fun bath in Mommy and Daddy's big tub.  He also drew a picture of our family to place in the box.
They cut out butterflies and Brian dictated little messages to Jenn to write on the back.  And he decorated a "secret butterfly" that he whispered a secret that was just between him and Gavin.  The photo of Ed with Gavin in his special bed was glued to the box - almost signifying it's importance.  I thought that was very interesting.  
I really think Brian feels close to Gavin sleeping in his bed - and that makes us so happy.
Brian couldn't wait to get home to show his Daddy his special "Gavin box" - and it was sweet to see the two of them going through all the pictures before we tucked him into bed.
On the Chasing Rainbows Facebook Page, I have been posting photos and videos of Gavin leading up to his birthday.  I originally thought that I'd be up to his last picture by his birthday - but that's just not happening.  I took so many photos along the way - documented everything.  And this "trip down memory lane" which was really just something to make me feel better - has taken on a different meaning.  I'm hoping to share all the things we did... equipment we tried... alternative methods we used... everything we did and learned and were taught along the way in the hopes that others can benefit from Gavin's journey.  Just the thought that I might be helping one Mom with an idea for her child makes this painful time a little less painful and a lot more rewarding.

Along the way, I am remembering just how blessed we were to have had SO many people to support us.  I'm only in Gavin's second year, so he's still in Early Intervention at this point.  I had a therapist in my home every day for PT, OT, Speech and Feeding and a Teacher.  I learned SO much from these women - probably more than they'll ever know.  Seeing all the pictures reminds me of how very lucky I was to have had the best people cheering not just for Gavin - but for us as a family.

Just last night I skipped ahead while looking at photos and saw the ones I took during Gavin's horseback riding therapy.  We decided to try "Hippotherapy" with him in the hopes that it would strengthen his trunk... encourage him to engage and follow instructions... and maybe, just maybe, to take steps.  We were fortunate enough to be assigned to a simply magical therapist - Miss Alana.  From the very first session it was evident that they had a connection.  
Alana got more out of Gavin than anyone ever could.  She even got him to take steps holding onto her.  
Gavin would do anything for Alana - and she was equally smitten with him.  She sang his favorite songs (Where is Thumbkin was his favorite back then) and got him to laugh - we just adored her.  We had to stop horseback riding after Gavin had his terrible ordeal with the corneal abrasion - and by the time we could have gone back, Alana was off on maternity leave.  We didn't go back and life went on.

Almost as if my thoughts last night summoned her - we bumped into her today at the hospital.  I was able to meet her son, Jack, and her newborn baby daughter, Samantha!!  Clearly we had lost time - but we didn't lose the connection.  I was so happy to tell her (again) what a huge impact she made on Gavin's life... his progress... and on us. We chatted for quite a while about Gavin... life... and kids.  

Someone upstairs knew that I needed to connect with people that were important to Gavin today.  Whoever it was... thank you from the bottom of my broken heart.


  1. I'm pretty new to your blog, but I just wanted to let you know that you are all in my thoughts. You have such a remarkable outlook & your family is so strong and loving.

  2. I am sorry that the grief is getting worse for you. I am glad that you were able to bump into some people that lifted you up a little bit. Sending you love and wishing you strength.

  3. I came to your blog through Momastery, and I have been reading your posts every day since. And I can tell you that by sharing everything you do, you are most definitely helping people. I have a special little boy of my own who turned 5 in June (and a younger son as well--they are not as close in age as your boys, but they definitely have that same special bond). There are so many similiarites between my son Jack and Gavin, it is amazing. Seriously, I feel like I was meant to find your blog--as lame as that sounds. We have never been given a diagnosis, despite all the testing that has been done, and it is easy to feel very alone on this journey. And while I don't actually "know" you, I read your stories about Gavin and it gives me hope. And it makes me feel like someone else "gets it," even if it is a person I don't know in real life.

    My son actually did hippotherapy this summer because of you! He has always had low tone and strengthening his core has been a huge goal of ours. I read one of your posts about it and thought it sounded like something that could benefit him, found a few places in our area that offer it, and was able to get in with one of them at the last minute. It was an amazing experience for him and he loved it. So thank you for sharing. I'm not sure if we ever would have done that had I not seen your post about it. Also, I have been loving your pictures this month, and I smile every time I see one where Gavin is playing with the Alphazoo Spinner or the little piano--both favorites of my son too.

    And I continue to keep you all in my thoughts and prayers, every day.

  4. This was a great post. It shows the great things you continue to work on. You are so right about therapy and the fact that while it can't fix the grief, it certainly is a place for someone to help you along the walk. What a blessing Brian also has someone very special to help him. Good therapists are not always easy to find.

  5. Beautiful! I know how much making a memory box means and helps when I was grieving my mum's death (at age 13) - I still have it now, and look through it occasionally. I wish I could've accessed counselling at the time though, I think it would have really helped - I guess I was just too good at looking like I was handling the grief.

    Thinking of you always, especially during this difficult month.

  6. Kate, Ed, Brian and soon to be Hope: There is no time limit on grief. Sometimes it can overwhelm us at the most unexpected times and feel like a punch to the heart that takes our breath away. Sometimes it ebbs away like low tide and gives us a moment or an hour of peace. That is also a gift, and just a different side to grieving. We must acceptt both sides, feeling no guilt for taking a breath in the peace. There is no danger in forgetting, but every chance to accept the memories that bring a smile along with those that bring floods of tears. God is in His Heaven and He is Who all thanks should be directed to, as well as the deep sorrows of our Hearts. He lost a Son to death, but thatSon conquered death that children like Darcy and Gavin could have their home with Him forever and forever where no grief or tears can ever reach them and where their bodies are new and glorious!!

  7. Kate....
    As I promised, I'm thinking of you today....

  8. I know all too well how you feel, I too lost my most precious girl 10 months ago, she was 6 yrs old and left behind her identical twin, 9 and 3 yr old sisters. It gets harder every day, and every day passes means it has been longer since I last hugged her and kissed her and it hurts so deeply. Re-living the last 24 hrs of her life in the PICU over and over is torture, because like Gavin she died very suddenly, she was severely disabled from birth but she was our greatest joy. I feel like I am lost, thank god I have three other beautiful girls to pull me back up. Take care!

  9. Brian did such a wonderful job! He is as amazing as Gavin.


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