Control is an illusion

She’s mostly not eating. Again.

These last few days, increasingly it’s felt like we’ve moved backwards in time to a few months ago when it was a constant struggle to get her to eat. When we needed to try every trick in the book to coax her to get close to enough milk in her tummy.

Then we got me on a diet that got her reflux and pain under control. Then we got her moved to a bottle. Then we got her a faster flow nipple. Then we stretched out her eating times to 3 hours. And then boom — this little kid was eating great! No more 1.5 hour struggles — in less than 15 minutes she was done. No more tiny 30 ml overnight feedings — she’d go through several bottles of milk.

Our feeding problems were solved! (Okay, well, she still wasn’t eating quite enough, but pretty close.)

But fast forward to now and, man, Brian and I are trying not to worry.

We looked at each other today and said, “Wow. Feeding her feels strangely reminiscent of 2 months ago when it took everything we had to get barely enough food in her. We thought we solved her root issues here. What happened?”

I’ve poured over the copious notes in the multiple apps we have — food logs, medicine logs, activity logs, diaper logs. We’ve brainstormed what environmental things might have changed. We’ve theorized maybe her new longer naps and uninterrupted sleep overnight might have done it. I’ve thrown around stopping my new digestive enzymes or red lentil pasta. We’ve considered stopping solids.

The maddening thing is that, no matter which way we look at what’s happening, there are no clear answers.

I realized today it is absolutely impossible to raise Eloise in such a way that we can change only one variable at a time. If we could, that would be amazing. Because then, any time she had an adverse reaction, we could always trace it back back to the problem source.

But there are so many moving pieces. Solids. My diet. Vitamins and healing supplements. Environmental factors. Learning new skills. Shoot, I even got my second COVID jab yesterday.

I’d love to say, “Well it’s just teething” but, well, from the parents of kids like her who talked to me about their little ones, their first baby teeth came in over a year of age. I also wish we could just say, “Well she’s just losing interest in milk right now, all kids do at this age,” but the reality is she isn’t interested in any of her normal things right now, either.

We’re desperately searching for a theory — any theory — of what’s going on.

Why?

I think maybe it’s less about “fixing” the problem and more about feeling some semblance of control in a situation where we feel absolutely helpless. We want to point to one thing and say, “Ah ha! We can change this thing and then her life will get better.”

Because, most likely, this current situation isn’t in our control.

Maybe she’ll start magically eating more if we change nothing. Maybe the situation will stay the same. Maybe it’ll get worse — to the point where we finally start considering a feeding tube.

We have no idea.

If only we knew what the future brought.

We’ve prayed and tried listening I don’t know how many times but we’re still at a loss of what to do — if anything can be done.

I think maybe that’s one of the hardest things about having a disabled baby. There is just so much that you know you can never control no matter how hard you try.

Likely, no matter how much speech therapy we do, she will never speak.

Likely, no matter how much physiotherapy we do, she will be far behind her peers in learning to sit, to walk, to jump — and she may never do any of those things.

Likely, no matter how much we get her food intolerances mapped out and under control, she will still eat far less than she’s supposed to.

Likely, no matter how great she learns to sleep right now, because of her chromosome deletion she will likely end up on some sort of medicine to help her sleep in the future.

Likely, no matter how much we prepare ourselves mentally, she will still get seizures at some point.

Likely, no matter how much we try to get her interested in the world around her (like his photo of us putting her hands in dry buckwheat, which she completely ignored), she will likely never dive into the world with the curiosity we have.

Likely, no matter how “great” of parents we are to her, she’ll still end up with behavior issues that will stump us.

Likely, no matter how much we read to her and talk to her and keep her away from screens as much as possible, she’ll still end up with the lowest category of human IQs — profoundly mentally disabled.

There is so much out of our control.

So much.

So if you read this, throw up a little prayer or a few good thoughts for us this week.

What isn’t in our control is how much she eats. But what is in our control is how much we love and treat her well in the midst of her troubles.

Gosh this is not easy.

Hugs from these two worry warts who are feeling kind of defeated at the moment and need some hope,

Mallory and Brian (and fussy baby Eloise)