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.

The Place Where They "Get It"...

Yesterday would have been an exciting day - Gavin's first day of Kindergarten.

Instead, I chose to spend the day at the hospital... the same hospital where he died.

It's hard to explain to those who have not lived my life - in and out of those hospital doors many, many times for doctor appointments, testing, surgeries and long stays.  And maybe it's even hard to explain to those who have lived that life.  But it was the only place I wanted to be yesterday - and I was so glad I made that choice.

Brian and I got there in the morning and paid a visit to the Family Resource Center first.  This is a wonderful room in the hospital for families to relax, use computers, do laundry, have a snack or a free coffee or tea and even borrow books from their library.  When Gavin was an infant and I lived at this hospital with him for months, we used to spend a lot of time in this room... and I did a lot of research in their library.  So our first order of business was to donate my entire collection of books that I've bought over the last five years.  Books on Cerebral Palsy, Hearing Loss, Disabilities, Therapy Techniques and more.  When I told Brian that Gavin and I used to come into this room at night so he could look up at their twinkly ceiling lights that look like stars, he insisted that we do the same thing.  So before we went anywhere else, Brian and I relaxed on the couch and did just that.

Next we visited with Jennifer, the social worker we've known since Gavin was an infant... and who helped us tremendously during his last days.  We left her with Gavin's feeding pump that we hadn't seen since he was a baby - hoping that another family could use it for their child.  

Then we headed down to the Child Life Department.  Brian was excited to see Miss Jenn, who worked with him before Gavin died to give him some tools to help him process the tremendous loss.  She was so generous to offer to work with Brian while I attended my first grief counseling session.  I left him happy and in excellent hands while I found my way to a little room... steps away from the Pediatric Intensive Care Unit where Gavin died... to meet with the counselor.  

You won't believe this part.  DuPont offers FREE - yes, free... as in zero dollars - bereavement counseling for a year.  You could go as an individual, a couple or a family.  I don't know how many hospitals offer this, but I find it to be a remarkable and generous gift to the families left behind.  Like us. But the reason I'm driving to that hospital for the counseling - which is close to an hour from our home - is not because it's free.  Not by a long shot.  I'm planning to make the trip as often as possible because it's at the hospital.  "Gavin's Hospital."

That was a big topic of my first session.  That hospital.  I experienced so much with Gavin between those walls.  In the first two years of Gavin's life, it seemed like I was making that drive for various appointments once a week.  We experienced some lows - scary moments following surgeries when Gavin had a hard time coming out of anesthesia on his own... to getting his diagnosis of hearing loss... to finding out, six days before his first birthday, that he had Cerebral Palsy.  But we also experienced some very high highs - like the day he sat up, unassisted, for the very first time on the altar of the hospital chapel... or the day that his sedated hearing test inexplicably came back normal... to every single time he came home after a scare.  I was always made to feel like I was the most important part of Gavin's team while I was there.  Doctors and nurses and therapists listened to me with an intensity - as they do all parents - like I was the real expert.  When you are a special needs parent - and so many things are truly out of your control - you need that.  You need the affirmation, the encouragement, the confidence from those moments.  Whenever I was there with Gavin, I felt like the best Mom.

Like many chapters after Gavin's sudden death, the "trips to the hospital" chapter of my life was slammed shut.  I feel a need to be there - and it's so hard to explain why.  I think other parents who are in my position will get it... but many won't.  I'm happy to have a reason to go back there - even if it's just for a little while.

I also spoke to the counselor about my on and off struggle with the unknown.  The unknown diagnosis. The inconclusive autopsy.  How I often replay that awful day on April 10th and wonder if I missed something.  I had to have missed something.

The reality is... there's nothing that he can say that will make this better.  And I don't mean any disrespect to him.  There's no one that can say anything to magically make my feelings stop.  That will come with time.  I know logically that Gavin died... that I couldn't have prevented it... that no one did anything wrong... that needing to come back to the hospital is ok and maybe even normal... logically, I know all these things.  But for me, having a place to safely dump all of these feelings - especially at Gavin's hospital where they "get it" and understand the life we led - is key.  Sure, I can pour out my feelings here in front of my computer - and, as you know, I rarely hold back.  But believe it or not, there may be things in my dumping session that I won't share outside of his office.  GASP!  I know... even I find that hard to believe as a confessed "over-sharer."

After my session, I went to collect Brian and found him happy and content doing craft projects with Miss Jenn.

She told me that she thinks he's right on track with how he's been handling Gavin's death, developmentally, which comforted me.  And both of them showed me a picture that Brian drew of our family.

Daddy is wearing the glasses... 

Mommy has the belly with Hope in it... 

Brian is on the left... and the floating head above Brian is Gavin.

After we hugged Miss Jenn goodbye, we walked down the hall towards the elevator and ran into Miss Stephanie... Gavin's former Occupational Therapist!!

And, while in the wheelchair clinic dropping off donations, we were able to hug Miss Denise who always handled Gavin's wheelchair adjustments.  The last time we saw Denise was the day before Gavin's ER visit on April 10th.  The two of us donated my Dad's wheelchair to the clinic.

We even ran into Bridie, Gavin's therapist during our long hospital stay when he was a baby!!  It was so great to see her.  I wish I could find the picture of her with Gavin when he was a baby!!  

Brian and I had a lunch date in the cafeteria... bought a toy in the gift shop... and even paid a visit to the PICU to say hello to any of the doctors and nurses that were there.  We stopped in the chapel where Brian asked me to take his picture... 

and we played for a long time on the hospital playground before heading home.

Brian declared on the ride home... "This was the best day ever."

We really spent the entire day there.  And it was the best idea I've had in a long time.  It kept my mind (temporarily) off of the "First Day of Kindergarten" blues.

But I was just holding it in.  I found that out the hard way when I got home and felt mentally, physically and emotionally exhausted.  We ordered pizzas and I went to bed early.  

Grieving is hard work.