eSCAping Type 1

Somehow I have a 3-year-old. And, since I searched high and low for a mom with Ataxia to tell me this before I got pregnant:

YES, I AM SO HAPPY. YES, IT WAS WORTH IT. NO, I DON’T REGRET ANYTHING.

See, I wrote one of my best blog posts – “A Different Kind of Mom-Shaming” – three years ago, and still agree with everything I said.

Like when I suggested my kid will “naturally acquire a level of compassion and acceptance far beyond what most children are taught.” Yup. Definitely already seeing that whenever he helps me do something without thought.

Or when I brought up people calling disabled parents “selfish.” Ugh. Get used to it. Apparently, this “selfishness” now applies to me being One&Done. (“You’re not giving Leo a sibling?!?!?!”) I see it as a chance to focus on giving one kid the absolute best life possible. I definitely spoil him because I know it’s the only chance I’ll get to have a kid that age.

I know you can think that way for multiple kids. But that’s what works for me. Like I said, “Call it what you will, but that ‘selfishness’ is what’s going to help my baby’s life be awesome.” So…

Personally, I TRUTHFULLY find each stage of his life to be better than the last. Like, I really loved having a tiny infant I could hold. But then I loved when he could crawl and actually grab the toys I handed him. And then I got to watch him learn to walk while pushing my wheelchair for balance. Then he started talking, which is arguably the most hilarious thing ever. And now he’s answering questions and running everywhere and creating conversations and playing pretend…

I’m sad he’s growing up so quickly, but I’m also really excited about the future. Not many things can make someone with a chronic, progressive disease feel that way.

Of course parts of each stage are hard, but that’s something every single parent experiences, not only chronically-ill ones. 

Like, I physically could not lift Leo in or out of his crib, since I’m in a wheelchair and drop-side cribs are banned. But he almost always slept through the night! So, I could sleep six consecutive hours, but I couldn’t just pick up my baby whenever I needed to.  And then he started standing and that problem went away. You win some, you lose some.

My problems aren’t always worse, they’re just different.

You should know that I could not do this on my own – I rely immensely on family and friends. Disabled parents usually need some sort of physical help. That’s ok. Needing help doesn’t make you a bad parent. Ignoring your need for help does.

Now, these people are absolutely priceless, but, at the same exact moment, relying on others is definitely the hardest part of motherhood, for me. I mean, you get it. Of course I wish I could do this on my own, though if that were the case, I’m sure I’d be wishing for more help.

But I really can’t imagine life without him. Especially since my progression has sped up and I had to stop working and driving and doing a whole bunch of other stuff. Being a mom gives me purpose and motivation every single day.

Even if that means watching Leo from the couch instead of playing with him on the floor. Or listening to an audiobook together instead of reading to him. Or sending him to the playground with Grandma instead of going there myself.

I’m glad Ataxia didn’t win this battle. It sure does complicate things, but whatever. I’m used to that.

Now, I purposefully keep saying “for me” because parenting is NOT a universal experience. Facebook (time and time again) has shown me that some people have a really hard time understanding that shared situations can evoke different feelings. Remember, someone acting differently from you doesn’t automatically make them wrong. 

I LOVE parenting, and my kid is pretty perfect, but…

Very simply, YOU need to ask YOURSELF if YOU are ready. Yes, there are a ton of other factors involved – especially if you’re doing IVF/PGD – but you really can’t control any of them, so don’t try to.  You’ll figure it out when you need to, so long as you’re in the right mindset. You aren’t expected to have it all planned out, just prepare what you can. It’ll be ok.

I wish someone would’ve told me that.