Mother’s Day for moms of kids with FOP (and other special needs)

Posted by Karen - May 10th, 2015

Today is Mother’s Day, which explains why I’m a bit later than usual at writing my weekly blog post… See, this morning we all hopped in the car and drove to a fab Vancouver-area restaurant called The Boathouse, which has an amazing and huge Mother’s Day brunch. Then, after that, we went for a walk along the seashore at English Bay. Wonderful morning, really.

Mother’s Day often gets me thinking about this whole motherhood gig, and the ways in which it’s coloured by experience with my daughter’s fibrodysplasia ossificans progressiva. Now, to be fair, I’d say that in most of the ways which really count, being a mother to both of my kids (one who has FOP and one who does not) is pretty much the same thing. But, there are some significant differences. In no particular order, here’s my list of the things which characterize my mothering of Miranda as contrasted to Owen:

– Reliance on doctors and other medical people. I know more about Miranda’s FOP than do (almost) any of the doctors who ever treat her, so I have to assume I need to tell THEM what they need to know about Miranda. When I first realized this, it was very strange for me to think that as a mother, I couldn’t just assume a doctor would know how to handle my child.

– Mothers are supposed to foster growing independence in their children as they age. I can do that to some extent, but I’ve learned that in terms of physical capabilities, my FOP child is going in the opposite direction – as she ages, she is able to do fewer and fewer things for herself. This is especially hard given how smart my girl is… She sees her friends getting more and more freedoms and responsibilities, and she’s not able to handle all of those same things. As a mother I have to remember this and help Miranda deal with this frustrating situation.

– Conversely, with schoolwork I sometimes push my daughter harder than I push my son. I so, so very much want her to have something she can excel at, and it’s clearly not going to be sports, so that leaves academia… At times I have to pull back, take a deep breath and remember that it’s going to be counterproductive if I tread over the line and insist on her doing more than she wants to or is ready to.

– Being conscious of how my daughter presents to the world. When Miranda was young and newly diagnosed, I found it extremely, overwhelmingly painful to think that people would look at my daughter and know that she is “different”. I envisioned a future filled with strangers staring at her, and often making assumptions about her and her capabilities. I also had to adjust to knowing that pretty much the FIRST thing anyone would know about my child is that she has a disability. This is something I had to take some time to learn how to cope with. And, I’m glad to say that by now, this isn’t something I think about anywhere near as much as I did when Miranda was 2 years old. If anything, I now occasionally take some perverse pleasure in seeing people’s reactions when they stare at Miranda, and she realizes it and says something like, “Wow, I really like your hair/earrings/shirt/whatever.” (the resulting total confusion and embarrassment on their part can be quite entertaining, ha ha!)

– Most of the time I’m able to just enjoy my daughter and how much fun she is, just in and of herself. But sometimes, I can’t help but be conscious of the fact that her future is… not necessarily going to be easy. This makes me wish I could burn the good memories into my brain, and hers. I may sometimes try just a smidgeon harder to make sure M has those good times.

– Worry. Worry is a monster which I find impossible to keep 100% under control. Most of the time I can banish it and push it away, but at times it creeps in and gnaws at me, at the very marrow of my bones. And the things to worry about with FOP are many and variable, depending on the circumstances. On a related note, when the beast does manage to get ahold of me, I have to also think about how not to also make my daughter anxious, which is an interesting juggling act.

There you have it, characteristics of the mother of a child with FOP (or probably other special needs as well). Big Mother’s Day hugs to my fellow moms in this category, a unique subset of mothers.

Me and my girl.

Me and my girl.

 

PS – Are you age 15 or over with FOP and suffering from a new flare-up on an arm, shoulder, leg or hip? If so, you may be eligible to participate in the current Phase 2 clinical testing of the potential FOP medication Palovarotene. This involves some short-term travel to one of three testing sites in Philadelphia or San Franciso, USA or Paris, France, but your travel expenses will all be covered (even if you have special requirements due to physical limitations). For more information, click here: http://www.ifopa.org/news-and-events/latest-news1/497-interested-in-participating-in-the-clementia-phase-2-clinical-trial.html

One Response to “Mother’s Day for moms of kids with FOP (and other special needs)”

  1. Debbie says:

    You hit it on the nail with your blog! I believe that all mothers caring for a child with special needs, feels and does the same things as you described. As I can say you described my situation to a tee! We all definitely share many mothering experiences in common! Thanks for your nice blog, a nice mothers day tribute!



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