Tuesday, July 1, 2008

I am no longer perfect, but Brody is

First a whine of sorts. Then news on Brody.

The whine:
It occurred to me at approximately 2:30am Sunday June 29 that I am not nearly as together as I think I am. I think I have discovered my coping mechanism and it is called faking it.

When Brody was born we were in a state of shock. Which really doesn't describe it. We were flattened.

But then somehow Brody lived, and so we lived, and then we came home, and I got on anti-anxiety meds and still worried every single hour about his kidney, his hands, his life, his throat, his skull. . .

One by one medical issues were addressed. And instead of having regular and complete mental breakdowns, I . . . didn't.

I think I regret that now. Because I think I should have been having lots and lots of breakdowns. And it wasn't as if my impulse was to not have breakdowns, it was that I had to keep it together. Keep it together, keep it together, keep it together. I demanded that I focus on the good things.

But you know what happened?

Bad things. Bad things because I was spending too much time trying to clamp down my instincts which were screaming at me to . . . to . . . have complete, utter, total breakdowns, really.

I was like a Stepford wife. Which would make my husband (and mother) laugh, because I wasn't perfect. The house wasn't perfect, my marriage became almost unbearably imperfect. But I pretended to be perfect to everyone. And maybe nobody was fooled, except for me, but maybe I was the only one who needed to be fooled and that is why the coping mechanism I chose worked for 22 months.

Here I am, 22 months later, and . . . everything is a shambles. I won't detail the details. The only things not a shambles are my marriage (which was in shambles 12 months ago) and Brody. I let everything slip into shambles but him. Dear god I hope that's not a delusion too. I don't think it is.

Do you know, the other day I was talking to one of Brody's teachers at daycare, and she was asking me about my pregnancy with Brody, and if we knew about his issues prenatally. I told her no, and she was shocked, (it's always, "How could they have missed everything on the ultrasound? To which I replied, "Exactly") and she said, "He is so happy, at everything we do." And I guess I must have given her a glazed over smile that understood her meaning to be complete fakery, and she then touched my arm, caught my gaze and said "No, really. Out of all the kids, he is the happiest one. No matter what we are doing, he is the most happy, the most excited, and has the most fun." Like she knew I didn't believe her and it was crucial for her to make me believe her.

Which it might have been.

So Brody is not a shambles, right?

But really, I have to recommend complete breakdowns to anyone dealing with a sick child, or other traumatic life event. Because I think if I had just allowed myself to have them, I would be able to sleep better now, and I would have saved myself almost 2 years of faking, which wasn't fooling anyone but myself.

And, really, only hurt myself. Because faking that you are keeping it together takes an inordinate amount of energy. And I do not have that kind of energy (or time).

In light of the new fiscal year, I am resolving to stop running away from my problems (and the universe sure as hell knows what those are) and confronting them instead. If nothing else, they will be surprised to see something other than my back and maybe that will be just enough shock to get them to resolve in my favor.

The news on Brody:

Brody can remove the splints by himself. And does so, approximately 10 times each day.

Tonight we were in the grocery store, buying Carnation instant breakfast (more on that later) and as Brody was sitting in the cart, a man walked by.

This was not any man; this was a man who looked like he had been in prison at one time (maybe more than once): picture a tall man with longish unstyled hair surrounding an unkempt goatee, which topped numerous arm tattoos and a harley davidson wife-beater, dirty jeans and boots. And an expression on his face that can only be described as . . . grim.

He sauntered past our cart, with Brody fascinated by him. The man was looking down the aisle. And just as he was almost past our cart, Brody said in his soft, sweet voice,

"Hi."

Which rather amazingly stopped this man dead in his tracks. His eyebrows furled and he looked at Brody (and even more amazingly did not look at me at all) and, somewhat at a loss for what to do, the man said to Brody after a millisecond hesitation,

"Hi."

And then he picked up where he left off and walked out the store.

It was my favorite moment of the day.

Now for bad news. . . Brody is also still not that interested in eating non milk food, despite having splints and not casts, and even with the splints off.

At which point I remembered a swallow study done oh . . . 6 months ago. . . in which they said he had acid reflux (GERD). I forgot, I think, because at the time they said that it probably didn't bother Brody because his esophagus was so narrow, the reflux was not reaching the esophagus.

Then we had surgery in March, in between our surgeries in February and April, to dilate the esophagus.

Which worked.

But now Brody is not so interested in eating.

And I cannot bring myself to wean him off the bottle, because frankly I think he gets most of his calories from the whole milk.

Thanks to my new friends at the Vacterl network, I bought some Carnation instant breakfast mix and now add it to his milk. Do you know how much that stuff is? $6.29 for 8 measly packets. That is criminal.

My other super-fine friend said that if I can get Brody's ped to prescribe Pediasure for weight gain, then our insurance has to pay for it.

So I have to make an appointment with our ped, and then probably get re-referred to the GI doc for eating issues and more appointments.

Just when we thought things would calm down. . .

5 comments:

Kristin said...

Hi there!!

Somehow along all the VACTERL parents blogs, I came across yours. :) My son was born with IA among a few other "issues", but I wanted to comment on the Pediasure. My son is super teeny for his age and his GI Dr. prescribes Pediasure so it is covered by insurance. It is great to not have to pay for that stuff, it is outrageous!! We have many feeding issues and I know how frustrating that can be. So BIG HUGS to you. :) Good luck with the GI and I hope they get some things resolved for him.

BTW, Brody is sooooo stinkin cute!!

I love reading your updates.

Dayna said...

I am pretty much speechless except to say you are my hero and even though you have been "faking it" as you say for almost 2 years, I think you are awesome. My biggest (((hugs))) go to you n Brody...I mean that. I hope you can get the Pediasure soon too!

Dayna

My Carousel of Progress said...

A very touching post that really hits close to home. My wife & I are often told things like, " I don't know how you are doing this," or "You seem to be handling this well" Our response is simple..."I have no IDEA really, but I think it is the love for our son, our faith in god, and the belief that family will be there no matter what!" Kudos to you for being brave enough to face your demons and fears. I know I have certainly shed my share of tears as I'm sure you did, but is that really facing the reality? A quick thought on Brody. Being fairly new to the VACTERL community I notice that parents of children with VACTERL seem to embrace, cherish and celebrate all life with their child has to offer. That kind of love can only bring out the best in a child...as seen by Brody's teacher. He loves life and all it is showing him and he makes the most of what he has. That he has learned from his parents, through your love, compassion, and no where else. So consider that when you wonder if you have truly been "faking it." You can not fake genuine unconditional love. Stay Strong and god bless.

Rebecca Batey Fradin said...

God, do I love the internet! Seriously. How or where else would I be able to click a few buttons and find someone singing my song...I swear...my weird, wackadoo VACTERL holding-it-together song.

Do you know how much better it makes me feel to read that your marriage was in shambles but isn't now?

Can I tell you how relieved I am to know that your son is OK because you've been faking it?

I am certain you know (or can imagine) how validating it feels - what a relief it is - for someone give you permission to have the breakdown you so deserve.

I just wonder what happens when you're a mom like you or I and you DO actually have that breakdown. I mean, do people stop asking you "How do you do it?" Instead of being super-mom do you become that-mom-who-lost-it-cuz-her-kid-is-sick? Would I feel better in the end?

I just wish there was a release valve for all the tension, emotions, and ick that build up inside. I often imagine/fantasize that a full-force breakdown (ambulance, straightjacket, sedation and all) would be that release valve...but I'm not convinced it wouldn't just jam up the works even more.

Thank you for writing this.

- becca

Robyn said...

Calm down? The universe doesn't know the meaning of "calm down."

I quite often "fake it" as well. I think, honestly, the key is to have people in your life with whom you can shed your mask, bare your soul, and simple be...real. Those people are worth their weight in cheese.