Sunday, January 4, 2009

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

12 comments:

Anonymous said...

Oh Trish, I'm so sorry. Does it help to know that Henry still doesn't eat like a normal kid??? He's normal in every other way, though. Oh, and he liked to be patted A LOT. Please don't worry. I do think he will wake up one day and decide to eat. Until then, remember that there are so many people who care about you and wish they could help. Unfortunately, this is a job for Mom. I'm thinking about you guys.

Julie (jandc)

Two Hands said...

Praying praying praying. I will do whatever I can to help. Moose, whale, elephants, rhinos.
Please God, let Robbie wake up one day ready, willing and able to eat.
Much love to you and your Robbie.
(And just in case it does just a little good to hear it again - you aren't a failure in any aspect or degree of parenting - you are a hero)

Anonymous said...

I am so sorry. Have you looked into an inclusive preschool/daycare? My son (so far) has been developing pretty normally but we decided to go this route because they are so caring and I feel like it is an incredibly atmosphere for him. The teachers are so patient, have so many techniques to try, and most of all are there to give ALL parents a little break (or chance to go to work). It also helps keep things in perspective and for me to notice the things my son does really well.

Mrs. Spit said...

Hey Trish:
I think that last anonymous put her finger on something. With the "special Needs" can you get some help for a few hours a week? Just so you could take a nap or go shopping or sit in a bookstore, or amuse yourself watching the fish in a pet store. Something.

I'm going to get a moose. And God will NEVER EVER get tired of listening to you.

Milenka said...

*hug* Many, many thoughts coming your way. I know you feel like a failure, but you so are not. Robbie is still here and fighting because of the steely will of his Momma.

Mountain Girl said...

I'm an early interventionist and work with a fabulous speech therapist. Just some thoughts - first, it sounds like you are a GREAT and loving Mama and Robbie is lucky to have you in his corner; second, I saw this with a child we are seeing, when Moms and therapist who work so hard to get a kiddo to eat, the kids pick up on this stress and "pushing" - have you tried getting someone else to feed him a bottle - if so, any luck? I have better luck feeding her because I wasn't involved in the initial "force feeding" time; third, I think you are doing great with researching, looking for the right fit for therapists to help, etc. and I'd say keep trying, you never know when you might find that perfect fit for Robbie - whether it's a nipple, feeding at night, etc. Hang in there. I cannot imagine how hard it is!

AngelsAmid said...

I'm hoping the day Robbie wakes up and wants to eat comes soon. I really admire and look up to you as a Mom. You really are a great one.

Jody said...

Charlotte absolutely loved to be patted. We had to pat her to sleep, pat her to comfort her, pat her all the time. It would take me 5,000 pats in a single night to keep her asleep sometimes.

Eventually, we were able to stop patting her... around 10-11 mo old. Now, she bangs her head or legs against the crib to make the mattress shake to replicate the patting! It's so funny.

Granted, we have no proof of her normalcy, but she appears to be completely normal. Even their reflux magically went away as they neared one year. This really is going to pass, and he really is going to be okay. The amazing thing is that the severity of the situation right now has no bearing on the severity of the situation even a week from now, much less a month. Just because it's awful now doesn't mean it's long term. It will all change, many times over.

Heidi said...

You are not a failure. You are doing it all and with no breaks for yourself. You are AMAZING. Hugs to you and of course to Robbie.

Anonymous said...

Have you thought about getting a 2nd opinion?

Anonymous said...

Hi Trish. No suggestions here, just empathy. Your baby won't eat, and mine can't poop. :-P After multiple tests and a surgical consult, we're still in "maybe it'll resolve on its own some magical day" limbo too. Here's hoping both our little guys get their relative (mouths and stomachs and) butts in gear soon!

- dr. girlfriend

Stacie said...

Oh, Trish. I am sending you hugs.