eSCAping Type 1

Although 2020 was an interesting year for everyone, I tend to forget that we don’t all have the same experiences. So a chronically ill person having a newborn right when a global pandemic is hitting honestly doesn’t seem that interesting to me, given everything that’s going on.

But that’s pretty unique, right?

So, at the risk of sounding pretentious, let’s end the year with a more diary-entry-style post. Welcome to my world.

Leo was born four weeks before America shut down. I was in my own hospital room for a week so they could monitor me prior to giving birth, and had unlimited mask-free visitors. We got home with just enough time for close family and friends to meet him without a glass door between them.

It seemed kind of crazy to suddenly be trusted with a baby. But, apparently, it wasn’t enough for just our lives to be turned upside down. The whole world quickly followed suit.

Yes. Leo sharing his entrance with covid kind of sucked. We had this brand new, pretty adorable human that no one could hold. Google filled in for any parenting questions we had, since all of the people I had lined up to help now couldn’t. My postpartum doctor appointment was done over the phone. It seems dumb, but I’m still upset that there was never a reason for him to wear any of the cute newborn outfits I got at my shower.

Then summer came, and things started to reopen, but with no clear guidelines on what we could do. If it was it ok to bring him here, why not there? Why could this person come inside, but not this person? Do we have to wear masks outside? Shouldn’t his mom know best, even in this era where absolutely no one has prior knowledge or experience?

Motherly instinct is shit during a pandemic.

At Leo’s 9-month checkup, the only “milestone” he wasn’t hitting was waving goodbye… which I didn’t even know was a thing? Anyway. The pediatrician said they’re noticing a lot of 2020 babies missing that skill because of quarantine and them not going anywhere or being around as many people as usual, which I found so interesting.

And kind of sad.

But – I’m not going to lie – that initial quarantine with a newborn was also kind of nice. I didn’t have to worry about anything being presentable (my house, my baby, myself) because no one was coming over. Quite literally ALL of our attention could be on figuring out parenting because we had nothing else going on. My essential worker husband got to be home on paternity leave instead of risking exposure. Leo not understanding day vs night didn’t really matter because time did not exist. We spent most nights having a slumber party in the living room so I could watch TV while feeding.

We bonded as a family so quickly.

Holidays are tough for everyone this year. It’s not exactly how I pictured my baby’s first, well, anything. But it was also kind of great not having a billion places to go and people to see. I’m ok with celebrating things as a little family of three.

And even though I’ve had a Pinterest board with First Birthday Winter One-derland things going since he was born, I’d rather spend that money on a Nugget anyway.

It is hard being a parent with Ataxia.

It’s exhausting taking care of myself, let alone a fully-dependant kid as well. Physical exertion aside, the mental workload is overwhelming.

For example, here’s a typical minute in my brain: What should we eat for dinner each night this week? Who will be here to help me cook? Have they been around any possible covid cases in the past week? What time can they stay until? Which parts of which recipes can I do on my own? Is there a similar, easier meal I can make? What groceries do I need to order? Where in the kitchen would they be so I can tell someone to look since that chair is in the way so I can’t look myself? Who can drive to the store to pick them up? When? If we have that what can Leo eat? Can he feed himself that? Is he getting enough Iron? Does he need more formula? Or maybe a different formula? What about sippy cups, since he can only use bottles for another couple of months? Which ones are easiest for me to get open? What one did his doctor recommend? Where is that folder with all his medical notes in it? Where is my birth certificate!?!?

It’s upsetting not being able to pick him up, or change his clothes, or sing him lullabies. It’s frustrating that I can’t safely take care of him on my own.

So we’re extremely lucky to have family members willing to come over every single day to help. This whole working-from-home thing is really working out in my favor, since (in my mind) it’s safer to have my sister here working on her laptop than sending Leo to daycare or having a Visiting Nurse here, which were my only other options.

Not to be dramatic, but we could not survive without them.

But I really can’t imagine my life without Leo, either. This year especially. As stressful as all this has been, just me and Ataxia quarantining alone everyday would’ve been pretty awful – I give people a ton of credit for doing that. Having a baby gave me purpose I didn’t know I was missing.

I need a lot of help doing a lot of things. I sure don’t always feel like an all-star. But, again, I gave birth and immediately went into quarantine all while living with a progressive disease. So I guess I’m doing ok?

I learned a whole lot this year. Perhaps most importantly that it’s easy to see yourself as a failure, but I bet there’s something you’re doing that other people view as an accomplishment – especially if it’s something rare. So, take a step back; you’re just too up close and personal to see the big picture.