Monday, May 30, 2011
Saturday, April 09, 2011
When I was in high school I took chemistry like everyone else did. Science was my strength, and the thought of actually manipulating things in the lab appealed to me.
Between Michaela's issues, and all these doctors scratching their collective heads about what's wrong with Gabe, we've got half a pharmacy at my house: he alone is on 2 different breathing treatments for asthma, a reflux med, an allergy med, a sinus med, and next week he goes on a long-term antibiotic for chronic sinusitis.
The Lord only knows what the allergist will find.
God help me.
Did you count it all?
15 different meds/therapies that these two children need daily.
I'm thinking that I need some Tylenol.
Saturday, March 12, 2011
Michaela and I have a nighttime routine. Thankfully, she’s not extremely attached to it, or nights out without me would be horrific. But when it’s a normal night, we do the same things to get her ready for bed. She’ll even remind me if I miss a step.
Get undressed and into PJs.
Pull down the cover of her bed.
Arrange a wet pad for midnight accidents.
She gets halfway into the bed, and won’t lay down until I take off any shoes or socks she’s still wearing.
Take off the VNS ankle bracelet and lay it on the bedside table.
“Mama, the pillow...”
Oh, right, I forgot a drool bib for the pillow (so she doesn’t lay in a puddle).
She flops onto her right side and I cover her up.
Then I mix the meds. 3 pills get crushed, 2 liquid meds. Mix it all up in a vial with some water and flush it down her g-tube.
Pull up the railings.
Stuff pillows into the railings for padding.
Turn on her radio.
Turn on her breathing monitor. It starts to bip with the rhythmic movement of her chest.
Then comes my favorite part. I’ll pray for her, usually saying much of the same things I’ve been saying for years, “Thank you God for a good day. Please let her sleep with no seizures tonight. Please give her a good day tomorrow.” She often will say the closing “Amen,” and I’ll lean in to kiss her on the left, soft, puffy exposed cheek.
But my absolute favorite part is right before the lights go out, but after the kiss. The way she lays, the left side of her neck is exposed. I like to bury my face there and just drink her in. All the familiar smells of just her. It’s such a soft spot that I have no doubt I could easily fall asleep there. I still can’t believe I survived a month without this routine. Without this particular ritual.
“You love me Mama?”
“Yes, baby. Mama loves you.”
A couple more kisses on that squishy cheek....so close to the scar where the VNS was placed...but far enough away to feel like newborn skin. A couple more deep breaths of that familiar smell, and I finally pull away.
Saturday, February 26, 2011
Thursday, February 10, 2011
"It occurs to me that we should treat answers like pronouns, connectors that get us to the next question." *
"On a gut level, it is why the surety with which some people navigate complex issues of life feels foreign, even fabricated to me. I am skeptical of people who “have it figured out.” "
"There is an art to, “the next question.” It is mystery that fuels passion. It is awe and wonder at the unknown that draws our gaze heavenward."
Monday, February 07, 2011
Monday, January 31, 2011
It is Well...
She is doing EXCEPTIONAL.
I can see her again. I can see her. Her eyes are bright again. Her face lights up and her smile is genuine. She talks with clarity. Civil clarity.
Her mind is clear.
She is back.
The issues we are currently dealing with, pale in comparison to what we saw in the hospital. It took some time, but she pulled out of that zombie-like state, and now only deals with some very benign handicaps.
Mainly, one of her meds causes a slight-to-pronounced tremor, depending on the time of day. She can be very unsteady. Let’s just say she can quake like the San Andreas. But it’s not all the time, and it’s not always that bad. Sometimes, it’s really not a big deal. She works with it. I don’t feel comfortable with her walking around on her own yet, and we use her wheelchair in all public places, but it could be worse. She could be completely immobile, like she was in the hospital. Also, when we first came home, she would sleep constantly. She would be alert for a brief time each morning until she got her meds, and then she was like jello. I learned the hard way to put her to bed or in her wheelchair before I dosed her--she was that lethargic, almost within minutes. Then she would sleep all day. But now, she appears to have gotten used to it more. If we’re out and about, she stays awake a whole lot longer, and can even move purposefully (as opposed to like jello) after being dosed. The improvement is very obvious.
Surprisingly, she still hallucinates slightly. But thankfully, her voice has gotten markedly quieter since she came home and started talking again. I have to strain to hear her sometimes, which is a HUGE difference from the past....oh, I dunno, year or so? So the slight hallucinating every so often is really no big deal. Definitely nothing I would make an issue of. She was getting too hyper and manic at the beginning of last week, to the point where she even ripped her g-tube out. We quickly upped one of her meds, and all is calm again. I will take calmly talking to invisible people over mania any day. Like the background seizure activity she has lived with for many years, this psychotic stuff might always be just in the background at the least. If so, background is fine. All-encompassing is not. Hopefully, “all-encompassing” will be a thing of the past.
There is also a cough that interrupts her when she eats, and we just started seeing her pupils dilate unevenly (although Chris says he’s seen it before). The cough is a well-known side-effect of the VNS. Unfortunately for Boo, she already deals with aspiration when she eats, which makes her cough. Add the “VNS cough” and it makes for some messy meals. I’m just keeping my eyes on it for now, to make sure the problem isn’t getting worse. So far, it’s only an annoyance. As far as the pupils go, uneven pupils can be a sign of some pretty nasty stuff. Hers only do it intermittently. Some people’s eyes just do it without any problem, however; and we hope that hers is just a by-product of the trauma her brain has been through and not a new development. Chief warned us that if she gets headaches or vomits with it, or if one eye “does it’s own thing,” we should be going to the ER. Thankfully, I don’t think it will be an issue.
Overall, what do I have to complain about? My girl is back from the depths of some pretty miserable stuff. I was on the verge of putting her in an institution. Then for all intents and purposes, it looked like she would exist in a stupor; just an invalid. Neither came to pass.
I know mercy when I see it.
And I’m grateful.
It is Well...
I get to be full-time Mommy again. A full-time wife.
I get to be home.
Home...It represents so many things.
Everyone who knows how long I was gone, who knows I'm a housewife, who hears that I homeschool, and especially who hears of how many children I have, knows instinctively that I MUST have been anxious to get back to my life.
They were right.
My world revolves around this address. My husband, so diligent to work a full-time job while attending the University as a full-time engineering senior. My 5 other children, ages 4-11, constantly growing, learning, changing--needing a Mama. My little farmhouse, seemingly sagging and moaning under the lack of routine care and maintenance. My church family, temporarily taking my place in many, many ways.
It's all here, just turning and twisting on an off-kilter axis without me.
I've built my life juggling these balls, and I don't regret setting them in motion. There is something so satisfying about building your life around relationships and investing your happiness in other people. Yes, there are risks involved in that. I understand the consequences.
But I could never have it any other way.
Because see, there is Michaela. The other ball in my act. Slightly un-round, slightly unbalanced, but just as vibrant as the others. I take great care to toss her in the mix with as much strength as every other ball. Even though it takes more effort, more skill...
Someday, she may just fall and break my heart.
But it will have been worth every moment.
I would never have it any other way.
It is Well...
...with my soul.
When you go through things that try you, that stretch you, it seems as though people expect your very foundation to be rocked. That you will either dig deep and learn a true lesson of life; turn to God, or you will curse God and move in a different direction.
And, perhaps that happens for a lot of people.
But I can honestly say, that is not my testimony.
On either count.
I don’t think there was one moment when my faith was tried. No, I KNOW there wasn’t one moment. Not one.
Did things end up the way I thought they would? Nope.
That doesn’t bother me.
Did I expect something exciting in Michaela’s condition at the end of it all? Yes. I could see a different outcome. A “good” coming from the “bad.”
But I didn’t pivot anything on it. Not my faith, not my trust, not my foundation.
I decided a long time ago that I would look for the good in situations and focus on that. “Good” is subjective. It varies. It changes. If the good that presented itself yesterday, is not available today, that doesn’t mean it wasn’t good yesterday. It was still the thing to focus on for that day.
But when things weren’t good, and I even felt somewhat in despair, I always knew that it was simply temporary. A door I needed to go through in the journey. And God still fits into all of that.
Even though those types of things cause people to negate God--when things change for the worse. For me, it does nothing more than reiterate His omniscience. From my perspective, life is like a chess game, and God is undefeated. He knows so many moves ahead of the present, that I couldn’t possibly argue with Him on His choice of placement. I can often see the move as it is and see the intelligence in it, even when it turns out to not lead to another move I imagined.
And then sometimes, the move makes no sense at all.
But the fact still remains: my perspective is altogether at a disadvantage. And I don’t question Him.
People often blame God for the bad, and despise Him for not correcting it. And then some people will criticize medicine, and shout it’s shortcomings from the rooftops. But I see the Divine in the midst of both scenarios, and can hardly say anything demeaning about either one.
Even when I’ve experienced both. It simply doesn’t move me.
Albert Einstein once said, “Science without religion is [crippled]. Religion without science is blind.”
I choose to believe that God has put a lot of time and thought into the science we base our daily existence on. The medicine we practice. The whole of what we know today would not be ours to claim if it weren’t for God’s generous outpouring of knowledge, skill, and tenacity. He’s allowed humankind to know what we know, and to use what we know for our good. Science, medicine, is a gift.
But it is manipulated by imperfect hands. Scientists, or doctors, are not gods. They are at the mercy of their own limitations. Limitations set by God.
So, in this light, I will not allow myself to get bent out of shape at the “grass roots level” when things don’t go the way I had planned. Science has done wonderful things for Michaela. God has allowed it, and I’m grateful. But when science, and even great human minds, can do nothing for Michaela, I refuse to let that rock me.
God can always do something for her.
And if He chooses not to, so be it. That will not rock me either.
I accept the fact that the next move on the board is unclear to me, and I’m perfectly ok with whatever position He takes next. I continue to make my own moves, relying on plays He has pointed out in the past, or holes in the board that seem to open up. Some based on science, and some based on faith.
When it comes down to it, however, I know He will win the game. Yet, I’m enjoying playing with Him anyway.
Because someday, I believe that I will clearly see that He was playing with MY pieces all along.
I know I can tend to wax philosophical, and definitely allegorical, so here’s the words to a song that just seems to simply sum it all up:
I’m running back to Your promises
One more time
Lord, that’s all I can hold on to
I gotta say this has taken me by surprise
But nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands
And even though I keep asking why, I keep asking why
No matter what, I’m gonna love You
No matter what, I’m gonna need You
I know that You can find a way to keep me from the pain
But if not, if not, I’ll trust You
No matter what, no matter what
When I’m stuck in this nothingness by myself
I’m just sitting in silence
There’s no way I can make it without Your help
I won’t even try it
I know You have Your reasons for everything
So I will keep believing
Whatever I might be feeling
God You are my hope
And You’ll be my strength
Anything I don’t have You can give it to me
But it’s OK if You don’t
I’m not here for those things
The touch of Your love is enough on it’s own
No matter what I still love You and I’m gonna need You
-Kerrie Roberts, “No Matter What”
Yup. That about says it all.