Ritual

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.

Re-cover her.

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.

“Goodnight, Boo.”

“Night.”

Hack!

Oh, if it's not one thing...

For the record, I have always been very thankful for the health of my children. I have 5 extremely healthy children, who rarely even get colds. To date, Noah is STILL the only child to ever have an ear infection in his life---and it happened only one time, at that. Can you believe that? How many classrooms of children could claim 4 out of 5 haven't had a simple ear infection? That's so incredible.

Also for the record, Michaela is fairly healthy herself. She rarely gets any sort of cold, flu, or infection either. The first time she ever got an antibiotic was when she got the flu 2 years ago, when she was 11. That's a pretty good track record! Many handicapped children are susceptible to anything and everything that comes their way. Seizure kids usually get hit pretty hard, the sickness symptoms being compounded by the breakthrough seizures that rear their ugly head.

But she does better than most, and is just very healthy everywhere other than her brain.

So, I've made it a point to be grateful and thankful--vocally thankful--for how much I DON'T have to worry about, with the other children.

****

But sometimes, life throws you a curveball.

Such is the situation with Gabe.

If you follow me on Twitter or Facebook, then you already know what I'm talking about. But in case you're not into those things, here's the scoop:

Gabe coughs.

A LOT.

The vast majority of his coughing happens during meals. He's just going on his merry way, enjoying whatever is on the menu that day, when the hacking starts. Oh, sometimes it's just a little "cough, cough," but about every meal it turns into a "HACK HACK HACK." And this can be so forceful that he can eventually loose his meal.

And break blood vessels in his face.

And make him decide that he doesn't really want to eat THAT badly.

Here's what he ate one day recently (his brother's plate...he doesn't eat this much!)...

And then this is what it did to him...

Poor guy...

I had been hearing about Gabe's issue more and more while I was gone to Children's. People were babysitting him, and noticing that something just wasn't right. Whether he was breathing really bad, or he was just coughing too much, he just wasn't right....and have I had this checked out?

Well, yes, as a matter of fact, I have.

****

Two year ago, it started. I told our pediatrician about it after a few months, and he agreed with me: it sounds like he's aspirating when he eats. His food goes down the wrong pipe. We tried anti-reflux medication (another reason people cough), and when that didn't work, aspiration just seemed reasonable.

Now, just so you know, I already have one child that aspirates (Michaela) and I'm pretty familiar with how it looks and sounds. I was pretty sure that I now had 2 kids with the same problem on my hands. The big kicker was this: why would an otherwise normal child be aspirating? Michaela's reason is easy: neurological dysfunction. But Gabe is neurologically "intact" and really shouldn't have this issue unless there's some mechanical issue going on.

So, the pediatrician referred us for a swallow study.

And would you believe it, he went through that study (where you eat in front of an x-ray machine) and didn't cough ONE TIME?

Go figure...

So, from all appearances, my hacking child was perfectly fine. And no aspiration to speak of.

But the pediatrician wasn't quite satisfied (good thing, because neither was I), and sent us to a pulmonologist. Who in turn looked at the swallow study, learned that Gabe was the baby of 6 children, and proceeded to take my words out of context and label his coughing as "a behavioral problem." Seriously. He didn't even really examine him. That doc just decided that he was looking for attention, that I must be babying him too much, and that since he passed the barium swallow, nothing was truly wrong.

I was flabbergasted.

I asked him, "So, you're pretty much saying that the only way I can prove that there's something wrong, is to wait until he gets aspiration pneumonia??"

And he said, "I guess. I think you should just ignore it, and he'll stop."

I completely disagreed with his opinion. I knew my kid. I didn't baby him too much. I didn't fawn all over him when he coughed. If anything, I got on his case because he would get to the point of puking all over the place. So I would try to get him to stop coughing, but I wouldn't pamper him because of it. I am the Queen of trying not to "make mountains out of molehills" and Gabe's cough was no different.

But, in order to just suck it up, I said to myself, "Ok, fine. Maybe he's right. We'll prove out his theory. I will completely ignore Gabe and his coughing, and we'll see if he stops 'looking for attention.'"

And that's where I left it...

...over a year ago.

****

But with me gone so much over those 3 months, I wasn't around to "ignore" him. And others, especially my Mom, were a little concerned with his problem.

When I got home for good, and after hearing their concerns, I realized that it had been a good, long while since I had started ignoring the coughing. It was long enough. This needed to be addressed.

Because, like I suspected, he wasn't getting attention, and he wasn't looking for any either.

There was something wrong with my son.

****

So, a couple of weeks ago, I brought him back in to the pediatrician. Again, in spite of the good

swallow study, he agreed with me that it sounds a lot like he's aspirating.

So we redid the study.

And, same thing: Everything looks good. He didn't even cough.

But, the speech pathologist who was there to administer the test, was the same one we had the time previous, and she remembered Gabe. She was pretty irritated that he was back for the same problem, and that it hadn't been addressed fully. And even though the test came back fine, she felt like something had to be done. She pretty much put her foot down and said that something WOULD be done. She let him finish his meal (the test is only about 10 minutes long, and he had more food to eat) so she could watch him further. Sure enough, he coughed. He didn't hack, but she was satisfied that he was indeed coughing when he ate. And that he really didn't want to eat because of it.

In her mind, it started to make sense...

****

See, she knew from his history that he had aspirated a peanut into his left lung 2 years ago. He had to have surgery in order to extract it. The whole episode wasn't the most pleasant thing a child could go through. And he was such a little guy (who is terribly shy), that she was starting to think that his body had developed a habit of coughing to protect that airway.

She knows from her experience, that some people will have these traumatic events, and they will start to instinctively cough. It's their brain's way of keeping that problem from happening again. However, it's an inappropriate response because it's generally not needed--they're not really aspirating. And in an older child or adult, they can retrain their brain to not cough every time they go to eat something. They "talk" themselves out of doing it. And after a while, the cough is a dead issue.

But with Gabe, he wasn't capable of retraining his brain to not cough. He was too young, and not verbal enough to even put into words what was bothering him, so the cough just became a habit his brain formed.

It's not something he has control over. It's not something he's trying to do. It just happens automatically.

But it's not necessary. It has no true purpose.

Yet, it's very much there, and it's only going to get worse as he gets older. He already can have an aversion to eating because of all the coughing (and puking), and he doesn't need that to get even more pronounced.

Well, it's her theory.

Sounds pretty legit to me.

****

So, as of right now, that speech pathologist got us hooked up with another therapist who specializes in correcting these unnecessary coughing spells. Can you believe they actually have someone who does that? Must be a popular problem!

We also have an appointment with a Gastroenterologist to rule out reflux. That was the pediatrician's idea. I think it's possible, at this point, but he has no history of reflux--not even as a baby--and he never responded to the anti-reflux meds that we tried when this all started.

But we'll see. He seems to have more symptoms of reflux now than he did even 2 weeks ago.

And even if that's not it, I totally can see him having that psychogenic cough the therapist described. He doesn't completely fall into that definition either, but it sounds close enough to be the likely culprit.

Either way, I'm glad that something is being done to help this problem. Poor Gabe. He just looks so pitiful when it happens. That video was just the tail end of a very forceful coughing fit he had one day a couple of weeks ago. I videotaped it in order to prove what I was seeing, even if the doctors never got the chance to see it first hand. In the clip, it all started from a chip he ate. However, it usually isn't something so pointy and "cough inducing." He hacks on everything from applesauce to chicken.

Sigh.

If it isn't one thing!

But I trust he'll be doing better by the end of March, when he goes through therapy and sees the GI doc.

Maybe then the hacking will be a thing of the past, instead of something that's been bothering him for over half his life.

Of Questions, and Answers

I was reading a commentary tonight by someone who is known to be an incredibly deep thinker.

Those who know me, would say the same about me as well. I tend to think to a fault. Analyzing the ins and outs of this, that, and the other; without any prejudice for the importance of the matter. I am just as likely to think deeply about folding laundry as I am about the meaning of life.

And the questions that spawn from this thinking...

Oy vey.

It's pretty obvious that when your pastor nicknames you "The Question Box," you have a serious personality trait.

Perhaps, even, a strength that is hard for others to recognize.

In my case, I strongly believe that my need to question what's going on around me is a true gift. It is the ability to see outside of the box. The realization that things aren't always as they appear. And especially the catalyst with which I learn. The day I stop asking questions, is the day that I will be in my grave. But it hasn't always been a part of me that I joyfully embrace.

I've been mocked for it.

Hailed for it.

Scorned for it.

And relied on for it.

Which sends terrible mixed signals. On one hand, I can get phone calls asking me to reiterate something I learned, when I was the only one bold enough to look stupid enough to ask the question in the first place. On the other hand, I've been ridiculed for daring to question something when everyone around me was stewing about that very thing.

So there are consequences to asking questions. I know that.

Most of the time, I can honestly say, I don't ask the question unless I'm ready to deal with the answer. Whether it be to my liking or not. Whether I determine it to be the truth or not. If I can't handle the answer at that time, then I keep my question to myself.

Even information can be acquired in moderation.

I don't need to have a need to know...right now...all the time.

****

"It occurs to me that we should treat answers like pronouns, connectors that get us to the next question." *

Mr. Haseltine's post about asking questions, and the need for answers to be springboards to the next question, is something worth chewing on. Personally, I can justify the concept. I can see the beauty and humanity and true need for endless questions. The drive to continue to wonder, to hope, to strive in the middle of this journey we call "life."

However, in the same breath, I can also see the destruction that accompanies endless questioning.

Because see, when we don't ever find a place to stop, a time to accept, then we are destroying ourselves mentally, emotionally, and spiritually. We are putting ourselves in a position to never acknowledge that there IS a final answer. Which creates a never ending loop of mistrust, skepticism, and even self-divinity. The place where we can no longer come to a conclusion on a matter, is the time where we are our own god. We can't trust any one to have the answer, no one can find the end of a matter, therefore, it is still left to be discovered.

Discovered by whom? Why, ourselves, of course, because that is the only one we can depend on when it comes down to it, right? If this one or that one can't have a definitive answer for something, then who does?

Can God?

And if He does, then some answers are already made available. They can be known. That has to be definite. Infinite. If it isn't, then God is not who He says He is.

There is wisdom, and knowledge, and truth to be had. There always has been.

****

"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.” "

Yet, there has to be something that can be figured out. Wouldn't you agree? Let's get basic:

I am a girl.

Period. End of story. There is no further question on that fact. Perhaps YOU aren't too sure about what YOU are, but in my case, there is only one answer:

Girl.

But, let's get deeper:

The earth is round.

Well, there was a time when this was a controversial topic. There wasn't a correct answer to be had. And those who thought they had it "figured out" were either proven to be very right, or very wrong. But Neil Armstrong stood on the Moon, and could conclusively say that the Earth is indeed round, and not flat as was previously assumed.

So this is a known fact. Again, there is no questioning this statement. And if some gentleman from a foreign tribe located deep in the mountains of Laos argues vehemently with me on this point, because he's never been taught otherwise...

...well, that doesn't change the truth of the matter.

In this case, I am the one who has it "all figured out." I am the one with supreme knowledge. With the indisputable fact. There is nothing prideful about that. I cannot change it, rearrange it, or dismantle it even if I tried. You know, it's a matter of "don't shoot the messenger!"

So, let's take it up a few notches:

There is a right way.

Oh, now, this is a biggie. And I believe Mr. Haseltine had concepts of this depth in mind when he wrote what he did. That such philosophical and intangible conclusions should not, could not be broken down into something so meagerly simple. If we make statements of this brand of finality, are we truly being pompous, or are we simply being the messenger?

I would argue for both.

In a court of law, you cannot take the stand to testify on a matter where you have no experience. If you do, you will quickly be judged incompetent and scorned profusely.

Yet, this is how so many of these deep questions are answered. In arrogance. Spit around by drunkards who try to weave and bobble their way into Common Acceptance. You cannot take what they say as Truth, even though they have it "figured out." Credibility is key.

And if that is the case, then credibility is trust. Trust is the ability to accept. Acceptance holds weight now. And messengers can be what they say they are, and can say they are what they have been:

Owners of Answers.

This is not something to shy away from.

****

"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."

Above all, I truly believe that there are great questions to be asked, and truly, even greater answers to be had. Both have their rightful place: questions not too arrogant to keep us in a constant state of unknown, and answers not too dismissive to keep us from questioning when it really matters. I can't see why we can't continue to question things, as long as we are also willing to say, "Ok, that settles it." when it is spiritually, mentally, and emotionally pivotal.

And on that note, sometimes those things are vastly different from one person to the next. One person's need to look deeper, does not trump another's need to set a standard. Or vice versa. This is where respect comes into play. I can respect the fact that you haven't settled on an answer yet, if you respect the fact that I have, and will act accordingly.

Because no matter how deep the concept, how unfathomable the mindset, it can still be as plain as the nose on their face---to someone. And they can't change that. Just like I can't change the undeniable truth that I am a girl. Please don't try to change my mind. I have the answer. But if you would like to disagree, I will try to patiently hear out your theory, but I doubt there will be enough exchange of ideas to warrant more questioning on my part.

When we stop acknowledging the fact that we know something to be true, then we also deny the fact that there is a God who designed Truth in the first place. It doesn't mean that there isn't mystery and wonder enough to sustain a person for a lifetime. It simply means that we are Ok...

...with the answers that we are not responsible for establishing,

...and the questions that we were created to be asking.

*With all due respect to Mr. Haseltine, but I am assuming he meant "conjunctions" instead of "pronouns." Conjunctions connect ideas of thought within a sentence, whereas pronouns are specific nouns used to replace a noun by another name. As a self-proclaimed grammarphile, I was a little confused at first, but when I figured out what he meant, the thought's significance rang true.

It Feels Good to Feel Good

Sometimes we like to count...

Sometimes, we like to color...

...in the lines.

And sometimes, we're just happy to be happy.

It is Well.

It is Well...

...with Michaela.

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...

...with me.

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...

...more risk.

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.

At all.

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.

No More Missing Link

Have you ever found something that you think is so clever, or makes your life easier, or even just takes a load off your mind?

Sure you have. We all have.

I did again recently, as well. And actually, to be honest, it didn't just make my life easier, or give me some peace of mind, or even strike me as really ingenious.

It did all three.

For years now, I have been wanting to have a way to communicate Michaela's medical needs when there is an emergency. You know, I'm thinking ahead. Being prepared. Not that I am automatically assuming there WILL be a problem, but it's more that I'm being practical and realistic. You are just plain procrastinating if you DON'T prepare for medical emergencies when you have a loved one with serious medical issues.

In some ways, I've taken care of this issue. I carry with me a jump drive with a combo lock on it, that contains all her medical info and all the software a hospital anywhere in the world would need to open those documents. I also make sure that the school and any babysitters (if we go out of town) have medical documentation as well.

Problem is, either I or her caregivers would have to be physically present in order to give the hospital that information. And more specifically, we'd have to be conscious.

But we all know, that in the case of an accident or medical emergency, that just isn't always possible.

And that has really bothered me. I simply hated the fact that there was this "missing link" in the chain of safety for her.

So I have looked into the options, and none of them seemed really worthwhile. The most

common method of communication in the event of an emergency is the medical alert bracelet (or necklace). I have looked at those things for YEARS at our local drugstore. Debating back and forth every time if it is something I should buy.

Not that they're expensive or anything, it's not that. I don't even think Michaela would care if she were wearing it or not, so that didn't deter me either. It was simply the fact that a bracelet with the word "Epilepsy" on it just wasn't going to do the trick for Michaela. There was no way.

I mean, do you get it? How can one word really help in the event of an emergency? Granted, I guess you can have something engraved on the other side with a little more info, but it's seriously restricted. Too restricted. Michaela's medical needs are pretty complex. She doesn't have a condition that follows the rules. You can't just wheel her unconscious into an E.R. and pump her up with the normal epilepsy drug protocol.

But I am assuming that's exactly what WOULD happen if they saw her wearing that bracelet.

Seriously? They've made drug mistakes with ME sitting right there! Last time she was in the E.R., they were about to give her a med that A) should not be mixed with a drug she was already taking and B) had potentially deadly consequences for her. Someone didn't notice the memo in her chart. Good thing I was there.

Doesn't help my mind in the event that I'm not.

****

Ok, so now that I've explained my concerns, let me just tell YOU about this little gem that I found!

Beloved Readers, let me introduce you to...

(Drumroll!)

The Invisible Bracelet!!

...or iB for short :)

What is so very cool about the iB, what is so incredibly clever, what makes my life easier and gives me peace of mind, is the fact that it can do what those medical bracelets cannot.

It can give detailed personal information to emergency personnel in the event Michaela needs immediate care....and I am not available to help.

How it works is like this:

Everyone who registers with iB is given a card and keyfob or "badge" (depending on your preference) and assigned a PIN that is printed on them. This PIN, when texted to a short code number (those 5-digit numbers you can text stuff to? yeah, that), allows the person sending the PIN, to receive a text message back that gives them detailed information about you and your condition. Whatever you want them to know.

And depending on where you live, some paramedics are even connected to a more extensive version of this service, where they can access more information than in that simple text message.

For us, we use the "badge," called an ICEDOT. It attaches to Michaela's clothing, has the universal acronym for "In Case of Emergency" (ICE) on one side, and that PIN and short code number with clear instructions on the back.

If you were to text her PIN to that phone number, this is the kind of info you would get:

Michaela (Mi-KAY-la) Morris

13yo F

Lennox Gastaut Syndrome

All her current meds (and doses depending on space)

Her VNS

Drugs she's allergic to

Phone numbers where Chris and I can be reached

Chief's phone number

So right off the bat, those paramedics have a wealth of information right in their cell phones or in their emergency database. Instead of fumbling to determine what drugs she has in her system, or why she has a g-tube, or if they are gonna mess her up because they don't know her history, it's all right there.

They now know the meds.

They now know what NOT to give her, instead of finding out the hard way.

They now can get someone to look up Lennox Gastaut Syndrome to get a fuller medical picture.

They now can call Chief and Children's Hospital...the medical team that knows her best.

All because of the little round piece of plastic that I attach to her clothing every day.

No matter where we are, or even if she's just staying at home (hello? house fire?), she wears her iB ICEDOT.

But for those who carry a purse or a wallet or even a set of keys, you can get the card version of iB. It goes in your wallet just like any card you would hold there. There is also a keyfob card (like you would get from a grocery store) as well. Michaela rarely has any sort of carrying case with her, so the ICEDOT is just perfect for our situation. The company originally advertised this round red circle as a medical alert device for athletes in case of injury on the field. But as soon as I saw it and what it could do, I just knew that it had a much broader application.

For starters, it gave this Mom some serious peace of mind.

****

So now, I'm trying to get the word out and alert some people myself. I personally think that anybody who has a serious medical condition needs an iB:

Diabetes? (What if your blood sugar drops really bad?)

Epilepsy? (ok, duh...no explanation needed)

Allergies? (do you really want penicillin in the ER by mistake?)

ANY kind of medical condition that would require special instructions,

...requires an Invisible Bracelet.

Check out their website, will ya?

And let me know if it completes YOUR chain of safety as well!

Some Stories Just Don't Have Happy Endings

Well, Monday has come and gone: the day we were supposed to be discharged out of the EMU and either into Chief's care or to home, depending on if the psychosis came back.

Today is Tuesday, and we're still here.

Partially because the weather has been so horrible. The various staff members: nurses, doctors, techs, support staff were all finding vacant rooms to sleep in and pulling double shifts. There wasn't anyone here to discharge her, and Chief was stuck at home and couldn't readmit her if he wanted to. Everything was on a "freeze," so to speak.

Including Michaela.

Literally.

****

Do you remember when I talked about her being in "status" back in November? Well, that's where she was again starting Sunday. Even AFTER reintroducing meds. She just laid around and stared and drooled. Every now and then, her face would get contorted in a partial seizure, or her arm would quiver. But mostly, she just looked drugged up and out of it.

Sunday night she just seized and seized.

By Monday, they were giving her rescue meds because the vEEG looked so bad. 3 huge loads of anti-seizure drugs later, and she was still out of it much more than she was aware of her surroundings.

Dr. E braved the treacherous roads to come in to see her and figure out what to do.

****

While she was here, she told me the news I was expecting, but wanted so badly to not hear:

"We simply cannot do surgery on this child. Her seizures are coming from too many places."

I felt my heart sink at that point. I think a heart can truly do that. It stops beating just long enough to drop out of position, scarring it permanently, before it returns to it's normal rhythm and place.

She continued, "I want to place a VNS. I think it could be a good option for her considering the psychosis and the global seizures she deals with."

The Vagal Nerve Stimulator is a sort of "pacemaker" for the brain. About the size of a large quarter, it is surgically implanted under the skin of the chest wall, and two wires are run under the skin and wrapped around the vagal nerve that runs up the back of the neck and into the brain. They don't know why it can stop seizures, but it does in some cases. It has also been proven to help psychiatric issues in some cases as well.

Some cases.

The rule of thumb, is that a VNS is as effective as medication. Yet, with kids like Michaela who have severe epilepsy, medications aren't that effective.

So the odds are NOT in our favor.

On top of that, the settings on the VNS need to be tweaked many times in order to get it to the right frequency to help the person. Then it may not actually show that it works for a year.

Or two.

That's a long time.

****

Dr. E could tell that I wasn't happy with the idea of the VNS. I've never liked the thing, personally. I always felt that it was too inconsistent to warrant it's use in cases of severe epilepsy. For one thing: it's permanent. They don't take them out. That's a big drawback in my mind. I mean, why would I want to put some metal contraption in my kid's body that might not work?? Ack. You're looking at a parent who hates giving her kids Tylenol, never mind implanting a foreign object in one of them! So right there, I don't like this thing.

And I told her how I felt, not just on that point, but on others as well. But when it really came down to it, she just calmly looked me in the eye, and told me,

"You don't have any other options."

....yeah, that seems to be the story of my life lately.

....and I effectively turned away so she wouldn't see my eyes well up.

****

Without wanting to say it and offend her, I really just wanted to talk to Chief about it. Not because I thought he would have a different opinion. Not because I thought he would say something more convincing. Not because I thought he had another option stuck up his proverbial sleeve.

But because he's our doctor and I trust him. He has this way about him that puts me at ease, like I don't have to impress anyone, and I know that I can even ask the "stupid" questions.

So when she could see my internal struggle, and emotional distress, she offered, "Why don't you talk to Chief about it tomorrow? That would help you."

"Yeah. I would really like to, first."

"Of course. He's been your doctor forever. You need to talk to him."

****

I got up early to pack up our stuff so we could move out of the EMU. I knew that they would get all those electrodes and bandages off the top of her head pretty early, so I made sure I was ready for them.

But they never came.

Come to find out, Dr. E had surgery duty today, and they didn't need to use our EMU room for another patient yet. So they just decided to let us stay there for the extra day, especially since we were waiting to see about the VNS.

In the meantime, Ally came by to see me. She knew I had gotten bad news, and like always, was wondering how I was doing.

I've been better, I told her. She understood. And tried to console me as best she could.

Out of all the comforting things she said to me while she visited, one thing really stood out:

"You would not believe all the doctors that have been in and out of my office today, Kelly. It seems like everyone wants to know how Michaela is, or is bouncing ideas around to see if there's anything else that can be done. Dr. Head Honcho has been by, and Dr. F came by with some literature on another form of therapy that he thought might work. Chief himself has been in my office 4 times today, and even he was trying to think of something else we haven't thought of. We're really pulling for Michaela."

That felt so good, I cannot even tell you.

Through this long ordeal, we've met most every neurologist that services Children's. They've each been attending on her case, most of them twice. They have all been very kind and sympathetic. Even when we didn't see eye to eye, I can honestly say, they are all very nice people.

This just proves it out again.

Michaela is not everyone's patient, she's Chief's. But today, it was very obvious that she is everyone's child, to Neurology. They are all trying to help her through this.

Which helps me.

And although Ally assured me that none of the potential ideas would work, for one reason or another, it just felt good to know that others were thinking about her. These are some of the best and brightest pediatric neurologists in the country...

...and they care about my little girl.

****

So Chief came through to talk about the VNS.

We have this unspoken language between us, that we established years ago: If things are rough, for either one of us, the handshake is a little bit longer than usual. It's just a simple way to say, (without saying): "It's gonna be alright." or, "I know you're hurting." or, "I wish it were better."

It's the handshake I used when he was sick for 6 months straight, and limped into our hospital room. The one for when his favorite uncle was dying a few years back.

And it's the one he used today, knowing that I had just gotten that painful news.

He sits down, sighing, realizing that this is going to be a continuation of the sad conversations we've had these past few months.

"So the surgery is a no-go."

I look away, from the pain of the thought, "Yeah."

(Silence)

"I really think the VNS could help."

"I know you do."

We went on to discuss the particulars of it. He had figured out how many patients he'd had on it, what complications he'd seen, the successes he knew of. To be honest, I was interested in the facts of what he was saying, but my heart was not engaged in the conversation. I didn't want to do it, plain and simple. But I had no choice left to help her, plain and simple.

Chris' only objection, was if Chief had an objection. Which of course, he didn't.

But I had to resign myself to the therapy, and resign I did. I told him flat out, "If you want to do it, Chief, we're doing it. I don't like it, I never have, but we'll do what you think is best."

He stared at me for the longest time, which was probably only 2 seconds. He seemed to be trying to figure me out, determine if I was going to be ok with this whole idea. He squinted a bit, and I could tell he wasn't sure if I was truly alright with the plan.

"Chief, it's ok. I'll be fine with it. I don't have to like it, to know I have to do it."

****

As soon as I had accepted the fact that we would be implanting the device, I was ready to move on. I wanted to talk about something else. Something more important. Something that needed to be addressed.

The fact that Michaela wasn't back to us yet.

It's all fine and dandy that we're putting in the device and she may get help from it, but that could be a year from now. What about the present? What about the fact that my baby isn't well.....now?

What are you going to do about this, Chief?

I can honestly tell you, that I was NOT expecting his answer.

"Boss, I don't want to do anything else. We need to let this be what it is."

My eyes spoke volumes, "What? Seriously? You don't want to do anything else? How can you say that? We've gotten her out of status twice already. Why not now?"

"Boss, we've tried already. She's had 2 doses of Ativan, and one of Tranxene."

"But Chief, those are benzos (a family of meds). She never responds well to those. You didn't even use a benzo last time she was in status!"

"I know, but I don't want to make her worse. If I try to get her out of it again, it could make things much worse. I could put her in the PICU, intubate her, put her in a coma, flatline her EEG for a week, and then what? She comes to, but her airway is now damaged and she needs a trach? She is exposed to infection after infection? She wakes up normal, but it only lasts a week? All that for a week?"

I stared at the floor.

Gently, he continued, "Boss, I want to say this right...."

"Just say it."

"We've got two extremes," he sighed. "On one hand, she's psychotic and manic. I can't send her home like that. On the other hand, she's like this," he gestures toward her limp form. "I can send her home like this, and I know you can handle it. You can live your lives, and she can be with you."

"Yeah."

"It's all about quality of life, now. We've got to get back to that."

My eyes shoot up to meet his, and in an unintentional accusing tone, "Quality of life? Who's?? She has so little now!"

"Yours. And Chris'. That's important too. The kids, Boss...I have to think about all of you."

I know he's right. Chris had said the same thing just the other night, and it stung my mind as he said it.

"You're right. She's more manageable like this."

"I know."

****

The information is too much. I lean over to wrap my head in my arms, shielding my emotions from any more darts of truth I can't stand to face.

"I don't feel as though I've satisfied your mind, Boss."

"You haven't. But we're beyond that. You can't say it nice enough to make it feel ok. I'm honestly just trying hard to not cry right now."

"Why? You should cry about this."

"Because I don't like to cry in front of you. I don't get ruffled easily, and I don't like my emotions to get in the way of making a rational decision. You are here to give me information. I can't process that properly if I'm crying." In my mind, I had already done enough crying in front of him the other day. It was enough for a long time.

"Boss, these decision require an emotional response. It's alright. I don't mind if you cry."

"I'll cry, Chief. You just won't be here."

"You'll cry later."

"Yeah.....I always do."

****

And I did.

As soon as he left.