Today was the day. After nearly a year of appointments, phone calls, follow up phone calls, disappointments, more phone calls and a whole lot of waiting, the growth kit for Oliver’s wheelchair was ready to be installed.
They’re funny… These simple things. So much emotion from such simple things.
It was a hurried morning to get the boys ready and out of the house in time for our appointment. Grief was the furthest thing from my mind as I raced down the freeway towards the therapy unit. We got there and exchanged hellos and they begin tearing apart his chair in preparation for the new seat. I visited with his therapist while the guys worked and beforelong it was finished and turned around for me to see.
My first impressions were, ‘Oh My God it’s so much bigger. It’s not cute anymore. It’s so wide and different. I hate it. Put it back. Put the little seat back. Make it small again.’
These seem like ridiculous thoughts. They sound superficial- like I’m worried about his appearance. But it has nothing to do with that. It means things are changing… becoming real on a whole new level.
Having a disabled child and a disabled teenager and a disabled adult are all very different experiences.
When your baby is small, many of the disabilities are hidden. Denial is plentiful and easy. You think to yourself, ‘Well of course he’s not doing that. He’s just a baby. Lots of kids don’t do this or that by his age. And sure he doesn’t walk but he is still small. I’ll just carry him like every other mother. There are cute stylish little carriers that make tiny babies so portable. Strangers in public don’t even know the difference between your baby and the other babies. Hiding is possible and often feels like the safest option.
But then a year passes.. Or maybe two.. And now all the kids his age have learned to walk and run and ride bikes and jump and climb… but not yours. It becomes harder to connect with the other mothers because you have none of these shared experiences. It’s much easier to sit with the moms with brand new babies, still cuddling and carrying their littles… like you.
As time marches on, the differences become more apparent and now there are questions. People misjudge his age, thinking he’s far younger, based on his skills, or lack-there-of. Gone are the days when you can use the same baby carrier as everyone else. The adaptive equipment becomes a more noticeable part of your life. Slowly your house is taken over by the feeding chair, the seating system, a gate trainer, the stander, therapy balls and swings. And then one day… there is a wheelchair.
The wheelchair. Perhaps the most recognized symbol of disability in our society. When the chair finally comes, after what, undoubtedly, was a lengthy uphill battle to procure it,there’s a simultaneous elation and sadness as you realize your child will now be recognized and defined by these wheels. It’s almost like a special-needs right of passage. In a way, You Have Arrived, at this place you never thought you’d be.
At first the chair is small, just like the child. Everything is still portable at this stage. But the step we took today… seeing his chair grow before my eyes just as his tiny body has this year, brought to the surface the next phase of processing and acceptance. Oliver is getting bigger. His body is getting bigger. His equipment is getting bigger. His needs are getting bigger.
Over the last couple years, whenever these thoughts would arise, I would quickly shove them to the back of my brain and run as fast as possible away from the grief that they brought with them. But there comes a point when running is no longer an option. Your new reality is upon you and it is time to either sink or swim. Today was that day for me.
As I stared at this new, bigger seat that I had worked so hard to get for him, I felt the sadness come. I felt the fear and worries of the future creep into my mind. I pictured a chair even bigger than this one, a full-grown adolescent sitting in it, waiting to have his diaper changed. And then all those unsettling questions that I’ve repeatedly shoved into the closet of my mind, burst through their door -demanding answers. Will he ever walk? Will I be carrying him when he’s 20 or 30 or 40? How will we find our freedom in the wild when I can no longer carry him on my back? Will my body hold up for this challenge? Will I be alone in this one day? How many surgeries will there be? Will he survive? What other scary things are coming?
We always fear the things we do not know.
It took about half the drive to NAPA today to fight my way back from this hazy fog of renewed grief. As I observed my tendency to project into the future, the lyrics of a song I recently heard came into mind
“Don’t worry about the future.
Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
The real troubles in your life are apt to be things that never crossed you’re worried mind… The kind that blindside you at 4 PM on an idle Tuesday”
I love this song. It’s humorous but also full of so much truth. As the melody glided through my mind, the clutches of grief released me and I was free again to be in the present moment.
Indeed our future is Unknown, just as everyone’s is. And although I don’t know the answers to all of those questions in my mind, I do know all the things I’ve already survived. The shock, trauma, unbelievable suffering, the loss and grief and struggle to find my place in this altered reality, have given me a relentless spirit and undying belief that, no matter what comes my way, I will survive and eventually thrive within.
Our shackles are only as strong as we perceive them to be.
Limitations will come and go. Situations will change. Challenges will arise.
But changing the mind is the most powerful tool to address them all.
So today I choose to see Oliver’s bigger chair for everything positive that it is…
An amazing tool with which my son can experience the world. How privileged we are to have access to this instrument of mobility.
I love you Oliver. This path we roll together continues to provide continual opportunities for growth. I promise you I will never pass them up. Your purpose here on this earth is only just beginning and I am so thankful to be walking by your side as your journey unfolds.