What it's like to live with a progressive neuromuscular disease

Thursday, August 16, 2012

Four blocks

Today was my son’s first official full day of kindergarten. A day filled with anticipation, excitement, nervousness and unknowns. And not just for him. If you’ve had the experience of launching a child into the post-preschool world, then you are familiar with the anxiety of a parent who is hoping for the most positive experience for his or her child. But for me, as with most new experiences in my not-so-new-anymore HIBM life,  there is another dimension to my anxiety. The sadness. There is a period of mourning that always has to take place with new situations. I have to confront new losses and thereby disrupt the homeostasis that I had previously worked so hard to maintain. I have to be reminded that I only get to feel happy and comfortable in my routine for so long.  This wonderful milestone of kindergarten for my son and our family, this “first” for him,  is unfortunately at the bottom of a long and growing list of first losses for me.

When I was first diagnosed  with HIBM, I couldn’t stop myself from thinking about the future, agonizing over how different my life was going to be compared to how I imagined, expected, assumed  it would be.  I would think about things that were so far off in the distance, things that had no relevance to where I was at that moment. Things that people would tell me to not worry about, but that I would dread nonetheless. It’s one thing to mourn them in advance. It’s a whole other thing to mourn them in reality.

Last summer we moved to a new neighborhood with an excellent public school so our son could start kindergarten there. We were lucky enough to find a place four blocks away from school. What a dream come true- being able to walk to school  with all the kids in the neighborhood. For the past year, I could simply enjoy that dream without having to try to actually live it. But as the start of school approached, and as our son’s excitement over walking became evident, I started to feel the panic set it.  I have somehow been able to live the last 5 years of my life in such a way that it hasn’t interfered too much with his. Or at least, he was too young to see how it was interfering. I’ve tried to keep his life as “normal” as possible. Of course, it helps that he’s not that into sports (not yet at least), so I haven’t had to confront those old fears  of how I would keep up with him running along the soccer field, etc.  But right now, he’s not asking for much. But even that is too much. He’s asking just to walk to school like all the other kids do. So, when he asked to walk yesterday, my rational logical self could have immediately explained that because I have trouble walking, it’s not an option for us (at least when I take him) and that I have already talked with the wonderfully supportive people at the school and they have arranged to make disabled parking more accessible for me. But, my emotional self immediately made room for a bit of denial and started wondering if I really couldn’t do a measly 4 blocks? I mean, after all, I do go to the gym once a week and do the bike or the elliptical. Perhaps I could pull it off?  So, with that can-do attitude, we walked the first day.  Right alongside of everyone else. Sure, I was slower than others and sure, I was fatigued and a bit sore, but I told myself it wasn’t that big of a deal. Then I walked home and wondered whom I thought I was kidding. It was a big deal. It wasn’t easy for me. But I still wasn’t ready to give up yet. I decided this morning that we would drive halfway, park and then walk the rest. But even the slight incline up the last block was a challenge. And then I finally  had to accept that  it wasn’t going to work for me. And that I wasn’t going to be able to indulge his simple, innocent request to walk the few blocks to school.

It may not seem like such a big deal, it may seem so minor in the grand scheme of life, it may be such a “first-world problem” when there are families who have to commute over an hour to school, but for me, it’s adding another loss to a long list of losses, in permanent ink. The visual that comes to mind for me is staring out onto my very own cemetery with lots of tiny little tombstones labeled with the various losses I have endured:  “running,” “walking without braces,” “hiking,” “slipping on shoes and heading out the door”  “playing guitar,” “playing chase with my kids” and now “walking my son to school.” I want to turn away from it, but with each tombstone that’s laid down, I know I have to mourn. The hardest part is that it’s no longer for myself. I can no longer shield my son from the fact that I am different. And that he will be different,  and sometimes limited too,   because of me. When he was a baby, I used to dread him growing up and being angry with me or embarrassed by me, but then I saw how he simply and easily just accepted it.  I will never forget the day we got off the tram at Disneyland over a year ago and without thinking I blurted out, “I’m so excited I wish I could run!” and he said, “Don’t worry Mommy, I’ll walk slowly with you.” I understood then that maybe it didn’t have to be the way I thought. But he was younger then. His life is evolving, he wants to do more things. He wants to move faster. He wants to be more involved. He wants to keep up with the other kids. Now it’s, “Mommy, come on, hurry up!” I wish I could. I wish I could  give him that. I wish he could have that. But that’s an emotional need that I have. I know that he doesn’t need that. What he will need is to learn how to cope with my disease. How to adapt. How to accept that life won’t always go the way he or we want it to. I try to remind myself of a quote that is always in the back of my parenting mind, “Don’t try to prepare the road for your child, try to prepare your child for the road.” I just wish there were another route for me to teach him about hardship in life.

I continue to hate that this is happening to me. I hate that my boys will sometimes have to suffer, on however small of a scale, on my behalf. I hate that I keep needing to make more room in the cemetery.

But I also can appreciate all of the flowers that are growing in between. New ones sprouting up all the time. They are beautiful and they belong to me too.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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