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Monday, November 28, 2011

The Secret

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.


Kevin Jordan said...

So glad to hear Christian has gained even more weight! Yeah! You are a great Mom - never doubt that!

giddyup said...

I hear you. . . and I hear Manny. It's the yin and the yang. Watch out for that yang but it's the yang that gets things done most times and you've done an excellent job. When things get to the point of utter frustration try a little yin and then the answer OR the secret will whisper in your ear.

Anonymous said...

I follow your blog and I am so inspired by your family's journey! You are amazing in all that you do! This entry reminded me in a way of a book I recently read, "The Traveler's Gift" by Andy Andrews. Definitely worth reading!

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