Our CAH Story - Part 4

Where we are today.

Life has a way of going on. We (I) spent Chico's first year of life on a quest to learn Everything There Was To Know About CAH. I read, I researched. I bought a subscription to the New England Journal of Medicine. A smart mama of a CAH kid got together with a renowned Endocrinologist and wrote a book, and I read that too. I found a message board, asked lots of questions, and drank and ocean's worth of coffee as I pored over the archives.

I arrived at each check up with Chico in one arm and my 3-inch binder in the other. I brought a list of questions to each appointment and wrote the Doc's answers down verbatim.

I learned that a parent is a child's best advocate when it comes to medical care. There have been discussions and showdowns regarding the best course of treatment for Chico. I have refused certain medical interventions, and I hold firm in my resolve that Chico's childhood will not be colored solely by this condition.

I have had the opportunity to pay forward the kindness shown to us by the P family. Not enough for sure, but I have been happy to do it.

I have seen my son turn suddenly, horrifyingly gray and go limp from an adrenal crisis we didn't see coming. I have held a syringe in my shaking hands and injected him with enough Solu-Cortef to bring him out of it. I have sobbed afterward, grateful that we have the meds for him, and sorry that he has to live this way.

In being Chico's mom, I have found a courage I never knew I had. Before he was born, I was the least confrontational person you'd ever want to meet. And eyeroll from a stranger could bring me to tears. I don't have the luxury of weakness anymore. I am strong, and I am brave for him. I am so grateful for this child, and for the way motherhood has changed me.

It seems kind of anticlimactic, doesn't it? Chico takes his meds four times a day. I wake up at 3:00 each morning to give him a dose. I've given a few rescue injections, but mostly it's just normal for us. Chico's only six, so we have years and years to go on this journey, but in some ways it seems like we've been doing this forever. Our doctor visits are shorter now, and I haven't brought my binder in a couple of years.

I hold out hope for a cure; that someday my son will lead a life untethered by medications, blood work, and vigilant monitoring. Until that day comes, I'm grateful that it's manageable. I'm grateful that we are able to procure his meds. I'm grateful I listened to my heart on that May day six years ago, and insisted that Dr. Redhead not brush me off again. I'm proud to be a mother to this remarkable little boy, and I hope that he will read this one day and know that he was meant to be here with me.

If You're Lame and You Know it...

Okay, so the only lame-o is me. I am not a good blogger, and I'm okay with that. I threw in the towel for NaBloPoMo and didn't even feel a little bit bad. I guess there are just lots of days I don't have anything to say. Between feeling foolish for the bit of navel-gazing that I do indulge in, and trying to protect our anonymity, there are just a lot of days that I can't/don't want to write.

But y'know what? That's okay. This blog is first and foremost a personal journal. When I started it, I had envisioned having it printed, after first editing every entry to include our real-life names and identifying info. It's not really a family history if it sounds like it's been written about someone else. Then I realized what an enormously yucky task that would be, so I started a private blog on another platform. I still have to pull entries from pre-2008 and archive them over there, but a year's worth is a lot less daunting.

I know I'll never develop a following. I won't be able to quit working and make a living from this blog. I won't get a book deal, or be asked to be a panelist at that Big Ol' Annual Blog Convention. Actually, I'm so reclusive that I may not even make any IRL friends out of the deal. But I'll keep this space open, writing when the words need to be written. I will see the rare comments I get as the treasures they are, and be grateful that someone took time from their day to comment on a stranger's blog.

I'm a lame blogger.

And that's okay.

My Salvation

It starts before I'm even awake. A racing pulse; a scream that rips through the veil of my dream and drags me awake. The reality of that scream must have been quieter than it sounded inside my head. I look over at Him, and he is still sleeping, his rhythmic, even breath undisturbed. I sit up disoriented; a memory I can't remember and yet can never forget.

He knows the story; at least as much as my heart and battered subconscious allow me to remember. I told him long ago, when we were both younger and surer and wanted to know every thing there was to know about each other. It was not something I told anyone, ever, but I told him. I wrapped a bloodied and ugly truth and gave it to him like a gift. Or maybe, the gift was no longer bearing it alone.

"You're home, you're safe," I whisper to myself in the darkness. The tears come then, and I rise to check on my own Precious One. He is beautiful, a marvel, the tangible proof of how his father and I loved each other then. I sit for a moment on the edge of his bed and make the same promises I've made a thousand times before.

"I will protect you."

I circle my home, flicking lights on and off as I go. I know there's no one there; our four-legged security patrol would have alerted us. I know, but I have to see.

I come back to bed and put my cold feet on His legs. I put my hand on his back and concentrate on the sound of his breath. I will my own to match it.

He is my salvation, and he doesn't even know.

Bits

I had an unexpected extension to my holiday. Chico fell ill last night, so I kept him home today. I'm sure my SIL would rather not have a wee thrower-up in her charge during the day. He's improving today, but I think he'll probably need to stay home again tomorrow. He's still not quite at 100%.

He tried to eat a few bites at dinner time, but immediately felt queasy again. Other than 4 crackers for lunch, his calories have been entirely liquid today. That reminds me, I need to go cajole him to drink a bit.

We've managed to get by so far with just stress dosing, and I haven't had to give a shot yet. I've got my fingers crossed that we'll be able to avoid it this time.

Dead Air

I like the spirit of NaBloPoMo. It's nice to have an impetus to post more often, since there are so many days that I want to come here and write, but never find the time.

However, I wonder if it really counts if I'm just posting something, anything, to fill the date. Like someone somewhere is marking off a big check box next to my name to say I've fulfilled my obligation.

Remember when I said that if I don't have anything meaningful to contribute I'd just as soon remain silent?

I think that's what I should do today.

Negotiation

I'm currently locked in a battle with Chico. I've given him the choice between eating a bit more of his barely-touched dinner or getting into the shower.

He has chosen secret option #3, which is to jam his ear buds in a little further to drown out his annoying moth-er and continue to watch his DVD in peace.

I'd better go check the mirror to make sure I haven't become invisible again.

Weekend Update

It's been a busy Saturday. Housecleaning laundry, and household shopping took up the late morning and early afternoon. Later in the day we went out for a late lunch / early dinner, followed by some retail entertainment (i.e., shopping just because), and dessert.

Now I'm off to burn off a few calories with this.

Afterward we'll veg out on the couch and watch movies until bedtime.

Gotta love the time change.

Antisocial

So... is it weird that I

Have not one single IRL friend that I keep in touch with? Anyone that I visit or call with any regularity is related to me, either by blood or marriage. My only social circle outside of family are my coworkers, and we've all worked together for so long that we might as well be related.

Am immediately turned off to anything that becomes a popular phenomenon. For example, Twitter, My Space, most clothing/decorating trends. I loved the 30-Day Shred when I bought it about a year or so ago, but as soon as it became a "thing", I decided I hated it. The only reason for my sudden disdain for it was that it was popular with too many people.

Enjoy working out, shopping, and even occasionally eating in a restaurant all alone.

I am painfully shy around new people. I need lots of time to observe before I am comfortable enough to 'join the party.' I also am fundamentally against talking for the sake of filling the air with words. If I don't have anything intelligent or meaningful to add to a conversation, I remain silent. I think I'm just an extreme introvert.

Or maybe it's time for me to find a troll bridge to live under.