What A Mother Does {Advocacy}

Unlike breastfeeding and adjusting to sleep deprivation, advocating for my children was a part of motherhood that came naturally to me.

As the second oldest child in my family, with five younger siblings, I was often kindly told by people that I would be a great mom someday because I’d have had plenty of practice. Now, I was not even close to prepared in most things, but as far as protecting and advocating for the children in my life, that prediction was accurate.

There’s always been quite a bit of mother hen about me. Making sure nobody got left behind or felt left out was my self-appointed task prior to adulthood. Worrying about my sisters falling off the roof or out of a tree was my bounden duty. Eventually, they got faster and more nimble than I, but that didn’t stop me from fretting or looking out for them.

Sister needs her eyes checked. Brother stumbles a lot. Someone needs help with math. I was sure to be vocal about these things. As a wanting-to-grow-up-too-soon young teenager, I tried to notice everything. I wanted to make sure everyone had their needs attended.

Nevermind that I didn’t need to be so protective or parental at that age; I guess it’s a personality thing. It definitely counted as prep for motherhood. When my own son started stumbling for no good reason, I knew something was up and we needed to get things checked out. This time it really was my job to advocate.

I brought it up a couple years ago and the doctor saw no evidence. However, I spent more time with my son than anyone else except his siblings, so I had plenty of occasion for observation. Seeing the symptoms continue- the same ones I watched my brother go through- I decided to push for an evaluation.

If you’re wondering why I’ve been more quiet on the blog this month than last, it’s not because I’m sick of writing. It’s because my time and energy are consumed with the present, and there hasn’t been much space to create. We had that evaluation on Monday, the 3rd, and it took an entire afternoon. The results were made official only a few days later; the blood-work reveals the telltale elevated enzyme. According to the doctors, my son almost certainly has a slowly progressing form of muscular dystrophy.

Advocacy doesn’t always bring about the relief we hope for as mothers. Someone telling us it’s all in our head? Occasionally, I've wished for it. I’m glad that wasn’t the case this time, and that my voice and questions were respected, but it’s still hard to hear the truth confirmed. However, I’m thankful that I get to be that person in my son’s life. I get to warrior up and be the defender he needs, because I have the capability to make sure he is well cared for. It’s a challenge, sure, but it’s also a privilege.

But… Am I scared? Yes.

There is more to this story. This post is the first in a series of three, as I process through this present reality. Read Part 2 and Part 3.

Jamie Bagley