Chasing the Inevitable?

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One of the most touchy subjects in the life of someone with muscular dystrophy involves mobility.  People with muscular dystrophy don’t fit a mold.  Each one is unique, with their own set of strengths and weaknesses.  Not all fall under the categories of “walker” or “wheelchair”.

Needs also change over time.  The path of muscular dystrophy most often robs its victims of abilities – sometimes slowly, other times quickly.  What once was easy can change to hard, if not impossible.  These quirks and variations make it difficult to help support mobility, and as a parent, it complicates my job tremendously.

How am I supposed to best set my child up for success?  I spoke to a friend today about these worries, and the questions remain unanswered, as they have for so long.  Most parents ask themselves, “Am I doing it right?”, and I am no different.  Every choice I make for my child effects him, and that’s a heavy task to take on.  I find myself struggling most in the choices that surround my child’s mobility.   Currently, I am doing everything in my power to keep him as independently mobile as possible, but at what cost?  We don’t own a wheelchair, yes, but now I’ve opened my child up to the world of falls, as well as an environment where he cannot keep up with his friends.  How do I satisfy all of these needs at the same time?  There are more questions than answers.

I do know this: no one knows the “right” answers, we just do our best day by day, with goals in mind that we head toward.  My goal is to keep my son out of a wheelchair as long as I can, and I am sticking to that.  It’s our decision as a family, and we must feel secure in the decision, right or wrong.  Are we delaying the inevitable, possibly chasing after it?  Perhaps.  Most likely.  But for now, we live one tiny, slow footstep at a time.  Harry will not, for a long time, be able to tell me what he really wants.  He cannot fully understand the picture, only what he knows.

Tomorrow we visit our physiatrist, who has remained incredibly positive and is one of my favorite people to meet.  He likes Harry light to increase his ease of movement, and I agree.  He’s very good at what he does, and he’s a minimalist.  Tomorrow’s visit may not be a good one, though, because Harry’s gait has changed to where he wants to swing his legs rather than engage his quad, bend at the knee, and lift it.  I’m not happy about it, and I’m sure he won’t be either.  We will move forward, one slow footstep at a time, and do what we need.

Harry is a happy little boy.  He loves to play hide and seek, to march, to take his trucks and place them high up on counters he can now reach, and to splash in puddles.  I am a happy mama, who is just over analyzing the decisions she makes, like most mamas do.  I thank you all for allowing this vent session, as usual.

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6 thoughts on “Chasing the Inevitable?

  1. Keep venting, my dear sweet, wonderful niece and Mama. You follow this journey, this battle, this mystery with courage, great courage, and with love, great love! There is no more that could be asked of you. My heart softens when I read this. You and Josh inspire me to be better, by who you are. And,
    in doing so, you influence a world, not just yourself. Sending you love and support. And yes (from your reply to my post on facebook) I loved our visit and hope for another whenever you can. Xxxxxoooo

  2. Wherever Harry’s path leads him he will thrive because you are his mama! We can only take one day at a time and make the most out of it. Harry’s life is filled with fun times a wonderful family and most of all love!! You are doing a great job-don’t second guess yourself… Let your instincts guide you!!! ❤️

  3. You are such a great mom. I look up to you and admire you so much. I spent yesterday running a race with an MDA dad (see what a sucker I am? I can’t get away from you awesome parents). Afterwards I was asking him questions and he was telling me about their diagnosis and issues that have come along. He said just what you did, there is no clear path. Everything is unknown and you just do what you think is right. I think a lot of parenthood is like that. You can read every book and magazine. But you really have to do what is right for your family and your child. Some days we make better decisions than others. But Rock and I both say that as long as you are trying to do what you think is best, you never truly mess up. We love you!

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