I Don’t Want My Son to Walk

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.

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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.

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Colten sitting with Santa at the party for a very brief, crying-filled moment to receive his gift:
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4 thoughts on “I Don’t Want My Son to Walk

  1. Katie, I love reading your posts. I can tell that it is helpful for you to write, and it is also beneficial for us to better understand spina bifida. Thank you!

  2. Kate, as I have always thought since the moment I met you, you are an AMAZING woman. I love reading your posts too. I am so glad you have such a wonderful husband to support you and that you have each other. I know this all cannot be easy. I agree that blogging about this must be therapeutic for you and I think that is great. As I have said before, please let me know if you or Richard need anything at all. I am only too happy to help. Hugs to you all.

  3. I had a feeling that there would be an update today. Kate, I too, do not like the ‘unknown’. I do ‘better’ with life if I know what is coming. The planning of it and seeing the plan happen. I’ve thought of this regarding my grandson Colten. I understand where you are coming from Kate. I haven’t been able to ‘wrap my mind around’ all Colten is going through and will go through. Putting your thoughts down is an excellent way to process those thoughts. What I think as I finished reading your blog is this: as parents we hope to and want to do what is best for our children no matter what physical ‘state’ or mental ‘state’ they’re in. We can only hope we can do the best we can no matter what the circumstance. I know you and Richard are up to the challenge because you love little Colten just as you love Parker and Maxson and you want the best for your precious little boys.

  4. I too like to know everything, plan, and be in control. This changed when my now seven year old son was born with a rare chromosome disorder. This left me feeling very lost and searching for answers. I did find other families like ours which really helped in the acceptance process. I believe he was a gift from God to help me learn that you can’t always know, plan, and be in control. I have learned to live for each moment and not worry about the future so much but some days are easier than others. We have to teach him everything through lots of therapy that our other three children just know (one being younger). But that has made every milestone even more rewarding. Last night I watched him cut out four small pictures all by himself for the first time. We have been working on it for years. I almost cried. I think as time passes it will get easier to accept not knowing. If you give him all the love and support you can, he will accomplish many things. Colten has two big brothers that will watch out for him and push him to be all he can be. Two quotes that look at every day are “Don’t ask to understand the secrets of the universe, but simply to know what this moment means.” “Accepting change bring about peace.”

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