Parenting and Scleroderma: How Does That Work?

“If you didn’t have scleroderma then you’d be a normal Mum, aye?”

Our youngest was making a comment about how he loves going for bike rides with his Dad, and wished I could come, too. In the same conversation, he talked about missing me at the latest school sports afternoon, and described how lots of  the other kids’ mums had participated in the parents’ running races.

Immediately I had visions of myself in slow motion. His mum crawling over the finish line about half an hour after the race actually finished, with a few of the parents who felt sorry for me obligingly clapping from the sidelines. I also could visualize my prednisone fat quivering in the sun as I lay there gasping for breath. No, it all would be awfully unmanageable, and also extremely traumatic, for those having to witness that sight.

The issue is that our son doesn’t understand the reality of the consequences if I threw all caution to the wind and attempted to be a “normal mum.” I don’t blame him for his comment, not for a nanosecond. I knew what he meant, and I’m aware that 13-year-old kids struggle with the right way to word things at the best of times. I also understand what he is missing. He wants to fit in, and he also wants to be active with both his parents, like most kids his age are, going on hikes, bike rides and walks on the beach.

I sat alone that night and thought about all the things I haven’t been able to do for such a long time now. I remembered all the active things I used to participate in as a mother. Our other two boys didn’t miss out as much on this aspect of parenting because they are a lot older than the youngest by, 10 and 8 years.

And so my descent began….

I felt like a failure and my thoughts leapt to beginning to wonder what I was contributing to our son’s life at all. As I sat there alone, my thoughts and emotions began the descent down that nasty, dark little winding staircase that we all visit from time to time. The one that leads to self-doubt and deprecation, and ends up in the dark cellar of depression.

The following day I continued to feel pretty low. In the evening my best girlfriend visited and we sat together for the evening and chatted.  Max arrived home and I watched as she engaged in an animated conversation with him about computer stuff. (I say “computer stuff” because I have no understanding of  information technology at all, apart from being able to open my emails and post on Facebook. I didn’t even know what Max meant when he kept telling me to “open the browser” until a few months ago.  It’s quite a miracle I manage to get this column organized sufficiently for publication!)

I noticed that Max connected with Lisa in that conversation.  He was enjoying having someone to share techie ideas with. I sat there looking bemused and wondering to myself what “the cloud” actually was.

As the discussion continued, Max looked up and caught my eye, then gave me one of his “I love you” smiles.

It was in that moment that I realized I can’t be everything to everybody, but I am still loved. I do have value and I contribute. No, I can’t run in the parents’ races at the school, or walk through the forest, or ride a bike for miles, with our youngest. But I can do crafts with him, help with his homework, love and encourage him and remind him what an awesome son he is — and all from my recliner.

My capacity to love, be kind and be genuine are all still there. They are values I put before any others.  They all still work, and they always will, even if my heart, lungs, stomach, legs and immune system don’t.

And do you know what?  …..

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