SMA Awareness Month: The Strongest People I Know

Being a parent is bleeping hard. It's exhausting, it's trying and it's emotional. Being a parent is hard because you put your child's needs before your own. If your child is awake in the middle of the night, you sacrifice your sleep. You put off your showers to bathe them, your favorite tv shows to read them books, and your naps to do their dishes. When your child is sick or sad, you feel it too. When you become a parent you {should} make the decision to come second... Or third... Or fourth.

I try to be the best parent that I can be, and I know a ton of really incredible parents, but this blog today isn't about me being the best parent or even about the best parents I know, this is about the STRONGEST parents I know, this blog is about my sister-in-law and brother-in-law. They have this strength in them that I don't know that I would be able to find within myself if I needed to.

When my beautiful niece, Falynn, was seven months old, she was diagnosed with type 1 Spinal Muscular Atrophy ({SMA}. SMA is a genetic disease that causes progressive muscle degeneration. The doctors didn't give them much hope after delivering this news, they were basically told to take Falynn home and give her all of their love. The life expectancy of a baby with type 1 SMA is two years. Being the strong willed fighters that they are, they took it upon themselves to research this more and as a result of their determination and will to fight, this upcoming October Falynn will be four years old.

This is and always will be a very sensitive subject, because no matter how much sympathy I have, I will never be able to empathize. I recently read an article my sister-in-law posted about people making the comment that we all just want a "healthy baby". And while we don't realize it, we are saying that we don't want unhealthy children. I am guilty of saying this and after reading it put into perspective, I feel really terrible. I also feel terrible that by making such a comment, I sent the message that there is something wrong with being disabled. I believe and would like to teach my daughter to believe that everyone is equal and everyone is beautiful.

I am guilty of complaining of being tired, and still, my day does not compare to the day that Rian and Gonzalo live. I get upset when my baby hits her head or has a cold, I cannot imagine the feelings they have knowing the things that the little love of their lives is enduring every day.

I say I cannot imagine their life, because I truly can't. We are lucky enough to spend weekends with them sometimes, but we don't live their day to day. And I'll never know how truly exhausting, trying, and emotional it is for them because of the simple fact that ... they are the strongest parents I know- I've never heard them complain, I've never heard them play the victim, and I've definitely never heard them wish Falynn was different than who she is. They are, Falynn included, stronger than anyone I know. They are fighters and the things they've done in the last three and a half years trump what most people do in a lifetime.

Your "typical" parent gives up showers, naps, and our favorite tv shows... These two have given up those things in addition to date nights and social outings because a babysitter just doesn't cut it. They've given up jobs to be home. They have given up the comfort of sleeping in their own bed, just the two of them, every single night, or even in their own home because they sleep {or don't sleep} in a shitty hospital chair. They've done it all and so much more, but I've never heard them complain about it.

August is SMA awareness month, so I wanted to share a little bit about the little lady that I love who has SMA. To learn more about Spinal Muscular Atrophy {SMA} and Falynn, visit their website: falynnswings.org