I’ve been struggling to come up with something to write about dealing with Maddy’s cast portion of her CTEV treatment. Of her 15ish weeks on this planet, 11ish have been spent in casts, so in her reality, casts are no big deal.
In my reality, this last cast has been just as hard as the first. A friend once told me “it doesn’t get easier but you get used to it.” She meant it in regards to going back to work but I’ve found it, like my personal mantra at the time: “it’s going to be fine because it has to be fine” applies to so much of motherhood and it applies here as well.
Everything I thought would happen did. I never figured out a safe and convenient method of doing day to day activities like errands and grocery shopping. But we never went hungry. She pooped on her casts, peed on her casts and even had one cast slip, but there was no lasting damage. People looked. Fewer stared. Even fewer questioned her casts. Only one person reacted in horror and accusation.
I wish I could have some great inspirational story of overcoming personal shame and finding an inner strength to become an advocate for CTEV awareness. I don’t. I still inwardly cringe when someone might see the casts. I still take each week one hour at a time, lose sleep the night before every appointment, and hold back tears every cast that gets wrapped.
And that tenotomy? She recovered long before I did.
There were a few moments where it broke me up inside thinking of all the things she missed out on because of the treatment. But there was nothing significant or life changing. What were harder were the moments when I realized what her life would be like if we hadn’t done the treatment when we did (thus requiring multiple reconstructive surgeries typically leading to lifelong pain) or not ever seeking any treatment (possibly never walking).
Technically, once these last casts come off, she will be “cured”. We should be rejoicing both at the fact that we are done with the casts and the fact that she will be able to lead a normal, active life. But with three months of full-time brace wear and then 3-5 years of part-time brace wear, with daily concerns with proper daily application, pressure sores and blisters, and the all to real chance that even with perfect compliance she could relapse, it feels like we’ve only made it partway up this mountain.