This crazy thought has been rattling around in my head for a couple weeks: I don’t want my son to walk. That’s insane, right?! Who wouldn’t want their child to walk?! But there is that thought, rattling around. I can’t seem to shake it. And it makes me feel guilty. Worst mother EVER. Then tonight I finally realized why I have that thought.
I will caution you now that this post contains insight into my mental processing. Don’t say I didn’t warn you if you choose to read on.
Richard, Colten and I attended a great Christmas Party this evening for the Spina Bifida Organization of West Michigan. It was enjoyable to spend time with other SB families and meet some new people. When we first walked in we chatted with the father of a 2.5 year old girl who was army crawling around the floor, very comfortable getting to where she needed to go entirely on her own. As Richard and this gentleman talked, I looked around and saw a variety of people moving in a variety if ways. I was drawn to the adorable toddlers dominating the open spaces, each moving at his or her own pace – some in wheelchairs, some using forearm crutches, others with walkers and braces, and some with no assistance at all. And after having a couple quiet weeks at home (medically-speaking at least – our house is never quiet), stepping into that party made the reality come flooding back as I wondered which of those children best represented Colten’s future.
I started to get those overwhelming feelings of uncertainty for the future, for Colten’s future. I want to know what he’s going to be able to do and not do. I want to know if he’ll need braces, crutches, or a wheelchair. I want to know what to prepare myself for, what to prepare him for and what to prepare our family for. With Spina Bifida, those answers aren’t there. We have to just wait and see. I do not like “wait and see”. Not knowing leaves me feeling very out of control. Those of you that know me, know I like control. I like to plan. I like to know what’s coming.
Then I decided to end my self-pity party because in reality, I have no idea what any of my boys’ futures will be like, and the course of their futures could change in an instant, at any time, completely out of our control and even out of their control. There are no guarantees that any child will walk – although we of course assume every healthy, typical child will. There is no guarantee that any child will have exceptional bladder control and become potty trained eventually – although we of course assume every healthy, typical child will. So why can’t I just consider Colten as a healthy, typical child and assume he will walk and potty train and do a million other things just like other children? Or why can’t I focus on the things he can do and will do (although even with typical kids this is still an assumption really) – such as talk, read, write, create, cuddle, laugh, work, have friends, play, cook and more. Partially, I think we have trouble sometimes focusing on the things he will do simply because the things he may not do keep getting thrown at us during paperwork, medical calls, appointments and so on. We are still trying to process his diagnosis and accept it fully.
And then it hit me even deeper. Control. Knowledge. Acceptance. Comfort. Preparation. It isn’t that I don’t want my son to walk, rather, I feel a sense of control if I can just assume he will be in a wheelchair. I can learn about it ahead of time, accept it as our new normal, get comfortable with the idea and make necessary preparations for our family and house ahead of time. So I would know what’s coming next if my son doesn’t walk. The uncertainty, the constant wondering, the unanswered questions… I don’t handle that very well. I like to plan and prepare. And I would rather plan and prepare for the wheelchair and end up with braces, as opposed to plan and prepare for the braces and end up with a wheelchair. This is a complete opposite mentality of how I felt early on after the diagnosis.
So as Richard and I talked about this he then asked why I didn’t refocus myself on therapies to help him walk, or at least move away from the need of a wheelchair. I realized that the therapy options are a bit overwhelming still and I feel like it’s easier to just ignore it in a sense. As he pointed out, I’m not typically a negative person and I don’t choose the easy way out, which would be just letting Colten “be” and not really doing anything. Then we dug a bit deeper and talked about the various therapies and how there really is no guarantee that any therapy will work, or improve his walking, or in the end, prevent Colten from choosing a wheelchair himself. So we could do hours upon hours of therapy, see improvements of varying degrees, and he could still choose or require a wheelchair. And at any point he could have another surgery and come out with less function and we would be back to where we started. It comes down to putting effort towards something and not getting positive results. I don’t like not getting positive results for my efforts and I certainly don’t enjoy paying for services that are not beneficial.
In the end, we realized that we need to learn more about the therapies out there, better understand them, and choose one that is right for our family and for Colten’s future. We need to understand there may be times we move two steps forward and one step back, or even one step forward and two steps back. We need to gain a stronger acceptance of a diagnosis that has no clear answers or predictions. And we need to help Colten be the best Colten he can be.