Thursday, March 13, 2014

They Said Yes!...

I've been a bit consumed with Gavin lately - more than normal.  I really didn't expect to be this affected by the impending anniversary.  The simplest thing can bring me to tears.  I love our life with Hope so much... while simultaneously hating our life without Gavin.  It's so confusing.

This time last year, I was still in my role as "advocate" - "fighter" - or, as some people enjoy calling me from behind their computers - a "helicopter Mom."  I've always taken offense to that term... "helicopter Mom."  As if.  I am more of a "Hovercraft Mom."  Hovercrafts get much closer.

I had a meeting today with the hospital executives to talk about the plans for the playground.  Miss Sara, Brian and Hope all came with me!  In the beginning, the gentleman in charge of the playground and its upkeep started presenting ideas to me about equipment he could purchase to put on the existing playground.  I listened... all the while thinking, "He doesn't realize how big I dream."  When he was finished showing me his ideas for different play pieces (which were all very cool!), I gave him my thoughts.  I told him I pictured a demolition of the current playground... and construction of a brand new playground in its place.  And I told him my plan is to walk into the hospital and hand over the funds to cover it entirely.  Somehow, someway.  I also suggested that they form a committee of current special needs families to get their input on what would work best for them to ensure their child can play safely alongside their peers.  Listen, I know what would have worked for Gavin - but there are so many different disabilities, both seen and unseen.  I would hope that as many people as possible can give their input to make the planning process just as inclusive as the playground will be!  The executives were so kind - and so receptive to my ideas and my passion for fundraising for it.  I was so grateful to hear YES so much.

As I sat there today, I felt the old me inching back.  The me that would get fired up with an idea for something that would help Gavin... and not stop until it happened.  It was how I got equipment for him - or services - or attention on him.  Today I felt like I was Gavin's Mom again - like he was sitting next to me and I was making something happen for him.  (Yes, I know I'm still Gavin's Mom - but I mean I felt like the Mom of the living Gavin)  Here I was advocating again... and I know it wasn't for Gavin this time, but it felt like it.  And it felt good.

Know what else feels good?  That through my silent auction I have the chance to help some special needs families.  On Friday morning I had an idea - it seemed like it would never work, but I wanted to try.  I picked up the phone and called Prime Engineering.  We bought Gavin a KidWalk from there and it truly helped him learn to step which, in turn, trained him to walk!!  I told them about Gavin and the fundraiser and the playground project and boldly asked them if they would donate a KidWalk for the auction.

So, I got confident.  I called Patrick Cyr of Cyr Designs - he hand makes the "Courtney Bed" which is the bed we have for Gavin.  He was THRILLED to donate a bed!!!  The developers of "Speak For Yourself" are donating communication apps.  Firefly (an offshoot of Leckey) generously donated a "Go To Seat" and - something I wish was around when Gavin was alive - an "Upsee".  I have a few other ideas that I'm fighting for... including an accessible van.  As in - a vehicle.  I really hope that lucky families are able to win these items in the auction for a very reasonable price.  I just want to help - it's a bonus if any money goes to the playground when it comes to this category.

Like I said - today I felt 'in the zone' like I used to.  It's ironic to me that on this day last year, I was also in a meeting.  And, in many ways, I was feeling the same feelings.

I know you're around me always, Gavin.  And I know you'll be there on April 5th at the event.  Although I can't advocate for you anymore, bugaboo... I can make a difference for all the children like you.  Somehow, someway I'll make it happen.  Like old times.  You'll see.
(Don't forget to purchase your tickets and register for the auction in advance by clicking HERE.  Don't forget that you don't have to purchase a ticket to register for the silent auction.  Don't forget to spread the word about the event - AND the auction... especially if you know any special needs families that might be in need of the equipment and services I'm auctioning!  Don't forget that you can make a direct donation to the hospital HERE by designating "abilities playground."  Don't forget that you can write in any dollar amount you want.  If you want to go to the party, but can't, consider donating the $25.00 ticket price!  Don't forget - ever - how grateful I am to have all of you in our corner.  You've made this year so much better for our family with your love and support.)
From this day last year...


Gavin and I have quite a history together.  

Although I was completely blindsided by his issues following his birth - and felt ill-equipped to handle the unknown ahead of me - the two of us quickly fell into a rhythm and created a very strong bond.  I would have slept in the NICU for those 30 days if they had let me.
Once he came home, it wasn't long before we were back in a hospital.  I was the gatekeeper to Gavin for close to three months as he recovered from RSV and Botulism.  This time I DID sleep there - on a cot next to his crib - only going home once.  I learned all I could learn from the doctors, the nurses, the therapists - and googled all through the night.
When we were finally settled at home and could "begin our lives" - I did everything times a hundred.  He needs patching for a half hour a day to strengthen his weak eye?  That, to me, meant patching for one hour every day without fail - and "made up" vision exercises of flash cards or books or puppet shows...anything to get Gavin to look.  Preferably, at me.  
And when he did look into my eyes, it was my greatest reward.  It still is.
Having the therapists come to the house was awesome.  I never missed a thing.  And I would purposely buy toys - and rotate them often - so he would be getting lots of therapy all day without even knowing it.
Over the years, Gavin continued to make progress.  And, if I'm being 100% honest, with each "gold star" Gavin received...I felt I received one, too.
But the difference was - Gavin's stars represented progress.  My stars represented bits of redemption.  I will probably always feel that I am responsible for Gavin's issues.
Of all the therapy that Gavin has received since he was an infant - physical, occupational, teacher services and hearing services... speech therapy has always been the most difficult.  

Not for Gavin... for me.

I could list an entire page with all of the communication methods we've tried with Gavin.  Devices and switches and systems.  None of them were very successful.  I even attended a two day conference filled with teachers who wondered what I was doing there - and I came home so depressed knowing that communication style would not work for Gavin.  At least not at that time.  I went around the house and took photos of everything - every toy, objects, rooms, family members - and for a long time Gavin did well with that.  We would hold up two cards and he would choose between them.  From what toy do you want to play which one is Daddy's yes and no.
We moved onto the iPad when things stalled a little in the picture department.  Plus, I thought it might be time to use a communication program.  We tried a bunch of different ones - and found success with the easy to use "So Much 2 Say" app.  Gavin continued to make choices on the iPad and it seemed things were moving in the right direction.

When he started school, I knew that I would be losing my "control" of a lot of things.  Soon I would be hearing about his day - and not seeing things first hand.  I knew that they weren't using the iPad that much in school for communication and wondered why.  Then, silently at home, I started to get annoyed that the iPad wasn't being used.  Then I really started to worry when I heard that they had gone back to pictures.  But his speech therapist, Miss Whitney, maybe sensing my tension, called a meeting today.  She assembled Gavin's teacher, his occupational therapist, an assistive technology expert from the school district and herself.  I dreaded this meeting.  If I'm again being 100% honest, I was defensive for two days leading up to it.  I walked in ready to be annoyed and adamant.  I walked in with a "nobody could possibly know Gavin or know what he needs like I do" mentality.

But then something happened.

I sat there and quickly realized...these four women are sitting here with me during their lunch break to discuss my son.  These women have prepared remarks and have watched and studied Gavin enough to come up with suggestions to help him.  As I listened to Whitney explain why she went back to pictures and how it may lead to using the iPad down the road but that it's just not functional right now... a light bulb went off.

I heard my Dad's voice:  "Kate, never think you are so smart that you can't learn from someone else."

In that moment, I realized something.  I was in control for 4 1/2 years.  I knew Gavin's every move... every expression.  I could anticipate every want... every need.  I was in control of his therapy and was able to offer a lot to the sessions.  But now - he's not in my home anymore.  It doesn't matter what worked for him last year.  It doesn't matter what worked for him at home... with me.  What matters is what works for THEM... at SCHOOL.  I needed to back the hell off.


When I took a breath, I realized I could then listen instead of simply hear what they had to say.  And when I listened - I was blown away.  "Start small," I heard.  "Put some of Gavin's cause and effect toys in a clear bin and put a picture on top.  It may take a LOT of repetition, but the goal is for him to touch the picture in order to tell you that he wants a toy in that bin."  "Put a picture of his milk on the refrigerator door and have him touch it to tell you he wants a drink."  When I listened, I realized that these women were on top of things.  They had a singular goal - to push Gavin so when he hits Kindergarten, he hits the ground running.  (That may be literal!)
Today I learned some important lessons that I think will serve me well as Gavin continues his education over the years.

One:  Worth repeating.  Never think you are so smart that you can't learn from someone else.

Two:  I'll never lose the 4 1/2 years when I was in control of everything surrounding Gavin.  It's okay to pat myself on the back for how far he came.  

Three:  After I'm done patting myself on the back, thank the women who are standing in my place. Teachers and therapists don't just train to help children...our children become "their children."  At least I have found this to be true for us.  When I picture people taking the time to even give Gavin a second thought after they "clock out" - it brings tears to my eyes.

Four:  The classroom is a different environment than home.  You have to let the professionals tell you what works for Gavin when he is there... regardless of what has worked for you at home.  There are different distractions and pressures... and we all know that kids are totally different at home than they are, well, everywhere else.

And finally:  A dose of humility is good for the soul.  And tonight, I feel humble... and ready to rock this communication plan!!


  1. You are such an incredible person! The way you are able to feel, understand, learn, how patient you can be, how rich in understanding. You really amaze me. You are also an incredible writer. What you are doing here is making past a present. There will always be people loving to read you and when reading you one always wants and needs to read more of everything that happened. Once I guess. But it's really still here. And such a difficult moments that you went through, you know, the way you see it, the way you live it, one can feel a need and perhaps also jealousy for the love that you were and are able to give and get in return. I love it all! Big big respects to all the family, especially to Gavin and good luck with your nice project. Mojca

  2. With Tears poured down my face both, of happiness and excitement of great news and at the way I felt you feel Gavin's presence I believe that his hands, along with God, are with you all the way Kate!! You are making this happen! We as a community, are proud to have you as an advocate for these amazing children with needs, although I am not a mom who have children that requires care, I have been a pre-k teacher and each day closer you get to this project, the more excited I feel for the parents and children who are going to benefit from the auction and playground! I hope your "hope" that you have fired up in you keeps spreading and keeps spreading like wildfire! We're with 'ya all the way Kate! Gavin shines through you!

  3. I wasn't able to comment on your most recent post, but you GO you HoverCraft mom you. :-) My eyes are shiny and my grin is big.

  4. Hovercraft. Lol. MUCH closer. In keeping with that theme, I am evolving into Mission Control. I look farther away, but I can still monitor the systems and push the right buttons.

    I wish we would all just let each other be the moms our kids need us to be.


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