Special Needs Mom's: On Handling The Tough Thoughts - The Mobility Resource

I’ve written a lot about stress and about self-care for caregivers. I strongly believe as caregivers to children with special needs, parents tend to be under a lot of stress. We often put everyone else’s needs before our own.

Ensuring a child needs are met, attending IEP meetings, running your child to appointment after appointment, taking care of medical procedures and organizing pills, etc. All of this while taking care of the rest of those pesky grown up responsibilities.  It can be exhausting.

But there’s another kind of stress that I don’t talk about as often. I rarely discuss this other kind of stress because I try really hard not to think about it. This stress involves the uncertainty, anguish,  deep seated fear that can come along with parenting our amazing kids.

I work very hard to keep these thoughts under control in my own mind because I fear if I let them free, they may well eat me alive.

My method for this I call compartmentalizing.

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For instance, I like to imagine that my mind has all kinds of little boxes and trunks in there, lots of little storage compartments.

There are things that I like to think about and I keep those things in an open box near the front of my brain. I like to think about my daughters giggles, I like to think about my son learning to long jump, I like to think about speed skating or the smell of my favorite flower  or lying on a dock on a peaceful night looking at the stars.

These thoughts are comforting, they bring me some peace or they make me smile.

Like most people there are things that I would rather not think about, at least not too terribly often. However raising a child with serious health concerns as well as physical needs leaves me with lots of challenging thoughts, things that I don’t want to think about unless I have to.

I keep these thoughts in the boxes, the “compartments” at the very back of my mind.  I fold the boxes shut and I put a little tape on them. I don’t want to forget these thoughts completely because there are times when I have to have them,  however I also don’t want them assaulting me at times when my mind needs to be on other things.

Am I foolish enough to lack the understanding that my child’s condition puts his life in danger every day? No, I have a complete understanding of how serious his health situation is.

I understand that he could have a new stroke at literally any time, day or night. There is no cure, There is no chance of remission, no hope for a transplant.

The main treatment option is brain surgery, (which he has had twice), And brain surgery is unlikely to reverse any damage. And is likely to cause more damage.

Brain surgery is risky and it’s our only treatment option if his brain bleeds again. I understand the possible outcomes with his epilepsy too, I’m not living in a fantasy land, I know people who have lost their children to a seizure. My heart aches for these families and my worry for my own child gets a little out of control whenever I hear about these tragedies.

Just writing this I’m getting sick to my stomach. Just allowing these thoughts to come to the forefront of my mind even briefly not only makes me feel physically ill but I can feel the stress and anxiety increasing in my body right now.

So excuse me for a moment as I take these thoughts and put them back in the boxes I like to keep them in, I think I’ll put a little extra tape on them to help them stay put for a while.

I don’t know if this strategy is healthy or not but I know that these are thoughts that I’m never going to come to terms with. I’m never going to accept the thought that I could lose my child at any moment of any day.

How am I supposed to accept that and live any sort of normal life for him or me? If I spent my life with that box open and that thought swirling through my mind all the time, well my active fun loving boy would be bubble wrapped, and not allowed to experience the joys, triumphs, trials and challenging that make life interesting.

He and I would both be nervous wrecks all the time and he would not be experiencing any kind of real life.  The reality is that no amount of hyper-protective parenting will change anything, if he’s going to have a new stroke he’s going to have a new stroke there’s little that I can do to prevent it.  We have some basic rules from the doctors, no contact sports, no roller super fast roller coasters and of course we abide by these.

However, even if he follows all the rules all the time, I know they won’t prevent a stroke, he certainly wasn’t going on roller coasters or participating in contact sports when he had his first stroke as a baby (uh oh, there’s those thoughts again… guess it’s time to bring out the duct tape for those boxes).

I wouldn’t say I accept this situation, but I understand it and I know that I want him to have the best life, the most full life that he possibly can. I want him to know that he is loved always, to work hard at school and get good grades, to try new things, to see his dreams come true. And of course I hope that one day he goes to college, gets married, has a family, brings grandchildren over for me to babysit that are adorable and busy little creatures just like he was as a little guy.

I hope and pray, and visualize him having a long life, growing up, doing all the things he says he  wants to do. He wants to be a scientist, an inventor, to create amazing things. I want to see him live those dreams.

But I try to keep these long term hopes and dreams of mine in a box as well. I don’t tape this one shut, but I don’t keep the lid off of it either. Right now we need to get through 5th grade, maneuver the social realm that is middle school, maintain our sanity while battling 2-3 hours of homework most nights, and maybe learn to keep a clean room! Oh and video games of course, we need time for video games, which are an integral part of most 10-year-olds lives.

Our experiences, while not what I expected have changed and molded our family in so many ways.  For me, I always remember to snuggle both my kids a little longer, I try to be a little more patient, and recognize to make as many memories as I can, because the reality is that none of us know what tomorrow will bring. Go hug someone you love.

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