Special

I feel like a failure.

And yes, yes, I know all of my loyal readers will comment and say that I'm not. My husband gave me the same speech this morning.

But I FEEL like a failure.

I already have what is perhaps an unhealthy emotional tie to his feeding. I'm his mom. My #1 job is to feed him.

First he wouldn't nurse. Now he just won't eat.

Logically I know I'm doing what I can. I've spend hundreds of dollars looking for a nipple that makes him happy. I set the alarm and get up sometimes every hour to try to get food into him while he sleeps since that's the only time he'll MAYBE eat. I drag him to doctors, I have therapists coming. I scour the internet looking for answers.

There are none. There are maybes and what-ifs and have-you-trieds.

I've been talking with a lady from a micropreemie board I joined who went through the same thing. So far she's the only person I've encountered that didn't end up resorting to a G tube. Her daughter managed to maintain weight gain overall (some good weeks some bad, much like Robbie has been) so they got by without one and then one day she just started eating again.

And I wonder if that's not what will happen with Robbie. One day he'll wake up and his stomach will be all better and he'll think "oh food? Yes, please. Thank you."

Do I struggle through until then? WHENEVER that may be?

He hasn't lost weight. YET. That's something, at least.

And maybe when he really gets going on solids, things will improve. The cereal is going okayish. Some days he gobbles it down like it's the best thing ever, some days he mostly spits it back at me. He's only 4 months adjusted- that's a pretty normal response.

But what if?

What if he DOESN'T outgrow it? What if I struggle on like this for another year. We sell our house so I can stay home to feed him constantly and a year from now he's no better off?

What does it mean? Is it as "simple" (simple. HA!) as he hurts when he eats so he doesn't want to. Or does it mean something? Is this a sign of autism?

He likes to be patted like nothing I've ever seen. The only thing that gets him through the worst stomach troubles is my patented double-pat. Both hands going full speed so that he's essentially vibrating under my hands.

I've now patted so much that I do it without thing.

Two nights ago David came to lay with me as I was trying to get Robbie to bed. I had my arm across his shoulders. After a few minuted David said "Why are you patting me? I burp just fine on my own." Then we both laughed. I don't even realize I'm doing it any more.

Is this love of patting Robbie has something normal? Or is it a sign of "something."

I tell myself "so what if it is?" I'd love Robbie through anything. But we ALL want our kids to lead full, productive, happy lives.

David tells me that even healthy, full term kids have problems. And that's true.

I know I shouldn't borrow trouble. But I think I really let myself believe all the wonderful things we were told in the NICU and beyond.

"He looks SO GOOD."
"he doesn't look like a preemie." (Whatever THAT means.)
"He's thriving!"
"He doesn't seem to have any last problems except reflux!"

I really thought that maybe- just maybe- we'd escaped unscathed. And now it seems that we haven't.

I'm on a new path of acceptance that we are truly becoming "special needs."

And I know it's not very PC to not want to be "special needs" but let's face it- we all want our kids to be normal.

And maybe he will be. Maybe we'll battle these eating issues and that's it. But I can't help but wonder what else is ahead.

In the mean time I pray. A lot.
God might be tired of hearing me cry. It's good He's so patient.


I would appreciate your prayers as well. And moose. We need more moose. Add a whale as well.

--Trish