Part 3: What if this one is disabled, too?

This is part 3 of a many part series. To follow along, you might first wanna read Part 1: Pregnancy loss after loss after loss after loss and Part 2: New Family Expansion plan

My fifth pregnancy had just passed 13 weeks and it was the night before the genetic bloodtest was supposed to come back.

If you asked me that night what we’d do if the results showed some sort of genetic abnormality, I still wasn’t sure.

Would we keep it? Would we not? Would it even be fair to Eloise — who would need lifelong care — to bring another kid into the world that also needed fulltime care and would most definitely diminish our capacity to give her what she needed?

But if we made the decision to terminate, could I even live with that guilt?

Especially after struggling for so many years to even get pregnant, I never imagined being in a place where I’d consider aborting my kid. But I really wasn’t sure we could handle caring for two profoundly disabled kids when caring for one has been so darn hard at times. I briefly imagined giving this kid up for adoption, but would anyone want a profoundly disabled baby? Again, could I live with myself knowing I’d passed that responsibility on to another family?

I went back and forth, running through each scenario in my head over and over again. I was lost and drowning in the less than ideal outcomes.

Recently, I’d had a pretty negative experience with a specialist doctor in Estonia. We were there for an issue Eloise had, but he was less focused on the problem at hand and, weirdly, more focused on figuring out how Eloise’s syndrome wasn’t caught before she was born. He was clearly frustrated that she existed and, to me, the subtext was clear — had we known of her condition, he assumed that, of course, we’d have aborted her.

That encounter bothered me for weeks afterwards as I kept searching for words I could have said to him in that moment that would have explained how I felt.

Finally, one day I had something.

If you’d shown us Eloise’s embryo, told us about her genetic syndrome, and then asked if we wanted to implant it, we’d have definitely said no.

If you’d shown us Eloise as a fetus, told us about her genetic syndrome with all her potential disabilities and a 33% chance of death before age 14, and then asked if we’d wanted to continue the pregnancy, I’m not sure what we would have decided.

Yet if you’d shown us Eloise as a fetus, given us a taste of what an absolute delight and joy she would become in our lives even with her disabilities and all of the exhaustion and chaos she’d bring, and then asked if we wanted her, then I’m sure we’d have absolutely chosen to keep her. I mean, how could we not had we known that she is a delight that Brian and I both feel thankful for every single day — maybe in part because we know a long life isn’t guaranteed for her.

And if that was our answer for Eloise, how could we decide the fate of this little baby based on genetic information alone? If genetic information only gave the negative outcomes and left out how much joy could still be experienced, how could we make a decision on this baby’s life, too, based only on genetics?

Didn’t this baby deserve a chance at life, too?

But, again, could we mentally handle another profoundly disabled kid and Eloise both for all their lives?

So late the night before the blood results came, I knew I had to meditate to reach some sort of resolution and peace inside. I wanted a magic answer or sign or even reassurance from God that there was a clear thing we were supposed to do.

As I sat in silence, sadly, no lightning bolt from God came, but a single thought did emerge.

No matter how my kid turns out, I wanted to be the type of parent that loves my child whether they meet my expectations or not.

Wow. I paused, letting that thought sink in.

That seemed profound. And true.

Yes — this was the type of parent I wanted to be. Because, whether this baby was “normal” genetically or not, didn’t I want to be the type of mom who met her kids where they were, rather than insisting they become what she wanted them to be?

The thought was comforting, but it still absolutely scared me. Because where were we supposed to get the capacity to care for two kids all their lives? Even beginning to imagine those scenarios left me wanting to curl up into a ball and cry. I was doing the same thing I did when we found out about Eloise’s diagnosis — imagining all the negative and leaving out all the possibilities of joy.

But, well, still, I had my answer. Regardless of what the genetic test results said, it looked like we’d be keeping the baby.

I went to bed, hoping I’d feel more peace filled in the morning.

Alas. I woke up that Tuesday feeling resigned and a maybe even little depressed. Because I knew what the day would bring — the news that we’d have another profoundly disabled child.

Once I heard, I knew I’d cry. I’d wonder how we could make it with two. I’d begin the grieving process all over again. And then Brian and I would have to figure out a way forward, like usual. And I’d have to hope that I came to a place of peace and acceptance for this kid’s sake.

Next post? Part 4: The results are in

All our love,

Mallory, Brian, and Eloise

• Facebook
• Instagram
• WordPress
• YouTube