I tend to not sugar coat things. I have that sass that can be blunt and I get stuck in my head a lot by thinking out every detail. I write to share this because I know I’m not the only parent experiencing life with a disability, and because I’ve realized how ignorant our society still is, so changing just one perspective as I said is an accomplishment as I see it. But I want more. I want to be seen as unique but also like any other mother. I want acceptance.
I can’t not show the world. I need to!
Yes, there are many people, mainly hiding behind their screen online, or even to my face, that make it clear from their perspective that they don’t believe I should be a parent because of what comes with my disability, because (and here’s the no sugar coating part many already know) My lifespan is shortened from my disability. I’ve beat the odds already and am considered pretty healthy for my disability. Those with SMA often pass from respiratory complications during an illness, or even sedation complications for a simple surgery. SMA requires special medical care, and with that care, people with SMA are living into their “Golden Years.”
I would never have become a parent if my health were bad. Disability is who I am and changes how I may do things, but one can still be healthy and have a disability. It is simply, a difference.
People still feel it’s their duty to tell me their negative opinion, even though any parent could pass at any time, I could even pass of a fluke accident. There are also many parents that are able-bodied and not great or even good parents, as we see with our overflowing foster care system in the United States. Disability and having a child also doesn’t mean you’ll be a great parent just because you accomplished it. It’s a daily effort as it is for all good parents. I’m doing it and thriving even through the struggles and lessons! Many of us are, as are our children especially!
I did not do this on a whim or hope.
If I felt there was a good chance I would not live to see Gia to adulthood, I’d never have had her. Yes, I could die. You could die. We all could. My care is good though, and when I’m sick we follow strict aggressive protocol to keep me well and have learned from past experiences how to keep me healthy. If anything, Gia has become more of my reason to live my healthiest.
I didn’t expect the ones who questioned being a parent to get to me at times though. The negativity never got to me before with my life. But that’s just it. I’m a parent now. I’ve changed. I have questioned did I do the right thing for her. I believe I have, and I believe her life will be pretty normal for a kid and that having a mom with physical limitations will make her a more empathetic, kind, accepting, independent and a strong girl that will grow into an amazing woman.
I certainly do question a lot more with my disability now. If I’m as healthy as I can be? Can I be healthier and how? What will Gia see and learn?
Yes, there are times I’ve asked what if I’m not here for her? That is the hardest question. I can plan and do everything and know how to stack the odds in my favor more. I’d be lying if I said it has not crossed my mind, or hasn’t been my biggest source of questioning after she was born, that I never saw coming.
I choose to believe that question is there to keep me on my toes with my health and life I live. I live as healthy as I can and am adding new things often. I do hope one day I won’t question that at times, but it’s real and there. It’s been a gift for my health and for giving Gia all I have in my quality time. I don’t enjoy the feeling of anxiety at all. I do believe I’ll see her into adulthood, but as a mom, the little wonders become big ones fast.
For more on Lauren’s journey to parenthood, look for her upcoming blogs.