Declaration

Suffice it to say, I am a somewhat complicated person. My husband sure thinks so. Every now and then I see him stare and shake his head in amazement at what I've just said, accomplished, confessed, etc. I know this about me, so it's all good.

One thing about me that is NOT complicated, however, is that I believe in God. Even though it's not humanly possible (I realize this), I have been a "believer" since birth. All good Catholics are, you see. And until I was 10, I was a good Catholic.

At ten, I came face-to-face with the fact that God was more than 5 hail marys and confession (scary!) twice a year. Interesting. And being the people person that I am, I thought this "having a relationship with God" concept to be pretty great. There were fringe benefits!

See, I also believed in heaven and hell. "Oh, you're just a product of indoctrination," you say. Perhaps you could call it that. But that's OK. You're indoctrinated too. Maybe just not to believe in heaven or hell. Maybe you're indoctrinated to believe that Ford trucks are the best, or that you shouldn't kill someone, or that you need to compliment your mother's food. Whatever you believe, it's been instilled in you by someone or something. Same with me, and I'm fine with it. I'm thankful for it. Cuz very likely, I'm right about the heaven or hell thing, and I'm doing something about it. I would hate to deny that they exist, only to find out too late that I should have seen a psychiatrist for denial. Or gone to church.....

But this is my motivation. I'm driven. Very driven. Etermity's a loooooooooonnnnnnnngggggg time, and I'm not interested in spending it in a place worse than here. Therefore, ever since I was about 10, I've been interested in doing what it takes to keep my reservation current at God's place. And mind you, it's GOD'S place, so He makes the rules. Sorry 'bout that. You can't get in just cuz you think you should. Or want to. Or said all those hail mary's. He made the directions clear, complete with road maps (kinda like the Mapquest of eternity). If you don't follow them, you get lost....for a loooooooooonnnnnnnnggggggg time.

It seemed to me, though, that I was miserably lost for awhile there in my late teens, early 20's. I knew there was a clear path around here somewhere, but I couldn't seem to find it and get back on track. Come to find out, I was going in the complete opposite direction. Horrifying thought! I talked to God about my problem, and He made arrangements for me to hook up with some people who knew the way.

Grateful me, has been stayin' on the narrow road ever since.

But this journey I've embarked on has required me to sacrifice, and preplan, and abandon, and even cry. I take comfort in knowing that I'm not the only one who's traveled the lonely road. And yes, there's only been one set of footprints sometimes. Yet, I keep seeing the "end" for my "means", and I keep trucking.

Yet, I've found this road to bring me the most joy and fulfillment I've ever known. It's incredible.

And it makes me who I am. Simply put.

I am not the type to gush about religious things. Never have been. But it will come out in my writing, I'm sure of that. Everything I do (or don't do, for that matter) is tainted with the concern of how it will affect my journey and my fellow travelers. So I'm declaring this now, for all of you who don't know me. Kinda like a background check. Just so you know what you're getting into.

Wouldn't want you to be deceived......;)

PFTD, Round 1

I tried to work on a Project For The Day today. See, we have this new house, which is actually quite old, and I'm not quite settled. We bought the house knowing that it was really too small for us, but it "had potential" (and land, big plus). So once we bought it, we tore it to shreds. Couldn't add any square footage, but you know, made what it had nicer, newer.

But for whatever reason, back in the day, no one musta had clothes. And even though they may have had a bazillion kids, their kids didn't have toys. Hence my problem:

The closets here are too small.

WAY TOO SMALL. Sigh. I told Chris I'd work with it, but sometimes these little concessions in life feel like marital vows.

"Do you Kelly, promise to love, cherish, and honor in sickness, health and small closets with lots of kids?"

Sigh. Sure, why not.

My adopted Mom calls it a challenge. Yup. So I took it on today. It was a daily project. The kind you tackle and get through in a day, which is most encouraging for when you see all those not-till-Jesus-comes-back type projects. Like the cabinet doors that I tried to paint 2 or 3 times. Or the doors that still need to be hung, but can't be, because the house is old...and crooked. But the closet that was mocking me, mine (or I should say ours, not like this house has 2 closets for one room, heaven forbid!), was beaten into submission today. And I have the scars to prove it. It looks pretty good, if I do say so myself.

Even if I DO have to use baby hangers to get my stuff to move on the rod.....

Girl, Interrupted

Bad day for Boo.

Boo, aka Michaela, has been having non-stop absence seizures for days now. Atypical absence, to be precise. I always wondered how in the world some epileptic kids could have 100's of seizures a day. See, I was naive then. Michaela was only having 1 GTC (aka generalized tonic clonic, grand mal) a week. And I was freaking out!

Now we've entered the realm of the "million dollar seizure disorder". You know, the one where if you had a dime for every seizure your kid's had, you'd be a millionaire? Yeah, these absence thingys put us over the top. We're on our way to 2 million buckaroos, baby.

She just can't complete anything right now. Sentances are like, non-existant.

"Mama....?"

"Yeah Boo?"

"Mama, uh..."

Gone.

"Mama!"

"Uh huh?"

"Look at that...."

"Look at what?"

Gone.

Sigh.

Walking's not much better. Yeah, she can (right now, at least), but what's the use when all she does is walk around in circles shaking her head? It's as if she has a goal, but forgets what it is 3 seconds later. I'm not kidding. It's that quick. And that's how she spends her day. Walking around in circles, getting out half sentances. She's been like this before; and when she was, we had to put her in a wheelchair just to keep her from wandering aimlessly. Maybe it won't get to that point this time.....maybe.

The Proper Care and Feeding of Doctors

I learned a pretty valuable lesson a few years ago. It all started when I felt as though my daughter's ped neuro was "wasting my time". We were getting nowhere with Michaela's seizure control, and the numerous EEG's she was ordering was driving me batty. It felt as though she didn't know what she was doing. So I decided to get a "second opinion".

Well, I mustered up the courage to do it, to tell her I was taking Michaela somewhere else. Which, really bothered me to do, because as much as I disagreed with her, I still thought she was pretty nice. She never really talked to me much though, and I'm too much of a people person. It just didn't seem to click with her and I.

So when I went in that day and gingerly told her (so as to not hurt her feelings) that I was taking Michaela to New England to see someone up there, she took the news well. Too well. She was excited for me. She called one of her colleagues up there and made an appointment, that day! I ended up seeing a side of her that I have never seen. It was like she appreciated my involvement, my concern, and my willingness to do whatever it took. For whatever reason, my relationship with that doctor has never been the same.

Come to find out, that doctor she made the appointment for in NH, was one of the best ped neuros out there--Dr. Greg Holmes. When I came back and we both had a copy of his recommendations, it was as if she and I became a team for the first time. We were working together. We both realized that there was a commitment there--to Michaela.

I've since seen her human side. And I like it when this barrier is down with doctors. They can be very "robotic", and we tend to put them on a pedestal. They deserve it a lot of the time, but they are still human. These people we trust to tell us what's wrong with our kid--they're not untouchable. And I've come to determine that they shouldn't be. They go through classes and workshops to teach them how to deal with our humanity. How to tell us bad news gently, how to be concerned when we're upset about a drug that didn't work, how to be interested in our kid's interests and remember what they like. Some are good at implementing this stuff, others are not. But all in all, I believe it's my job as a parent to show the same consideration.

Sometime ago, I noticed that Michaela's Dr was not in the office.....for a long time. So I called her nurses (you know, the ones we have a really good rapport with, the ones who know the most about us?) to find out what was wrong. And if you talk to the wrong person, the one who doesn't know you practically LIVE in that office, they'll tell you some kind of arbitrary nothingness, because it's none of "your business"... they think. Well, I got the right nurse and she told me the news. She had had a couple of deaths in her family. How that poor woman must have been feeling! I promptly sent her a card. And the next time I saw her, I asked her how she was doing, how she was holding up. She ended up taking a sabbatical. And I was happy for her. She needed the time away so she could be a good doctor when she came back.

And that's the point. These people take care of our kids. Who takes care of them? I'm sure plenty have family structures and social ladders they're involved with. That's fine. But when it comes to having a kid who's this sick, this needy, that doctor is a vital part of my day-to-day life. They're on the speed dial right next to my mother. Their e-mail address is quickly accessible. Their first name is common knowledge in our house. They call to tell us they're on vacation, and we know they're really taking care of a sick relative.

Now, I'm not saying we try to be suffocating. Far from it. But I try to give the impression to my kids' doctors--"Hey, we appreciate everything you do for us. What can we do to help you?" It means a lot when they've come in on a Sunday, just to help my child. When they're at the office till all hours reading to find out why my kid's brain does what it does. Maybe I can't return the favor, but I do what I can. We're partners in this thing. And I want them to know that I'll do my part. Perhaps some doctors don't deserve any respect, but the ones who do, should get it. If I can be the mom the doctor looks forward to, instead of dreads, then I've done my job.

I'm so thankful for Michaela's good doctors. I want them to be thankful for me.....

The Spike and Wave Theory

The more I read about LGS, the more I realize that Michaela could be here a real long time. I initially was under the impression that life-span for these kids was not much longer than the 20s. But yesterday I heard about a 29yo and a 67yo with this syndrome. 67 years! How crazy is that!

I was reading a blog this morning (indecisivegirl.blogspot.com June 28, '05), and the mom made this really cool correllation. Her son has LGS, and she was talking about how kids with LGS have an EEG where their brain activity looks like a bunch of spikes and then slow waves. This is the typical LGS pattern, and when they see it, they know what your kid's got. Well, when you have a child with a severe epileptic syndrome, life is very much like a series of acutely intense times, followed by a period of relative calm normalcy ( if you can consider life with a handicapped child "normal"). It's like a spike, and then a slow wave. I thought that was such an interesting way to look at it. Here's a link for a picture of this EEG pattern: http://www.mcg.edu/som/clerkships/Neurology/lecturenotes/Disorders.PDF
Go to page 8.....that's where you'll see it....

You know, I need to be concerned for my other kids. As much as Chris and I are dealing with this right now, they must be dealing with it too--even if it is on another level. For the most part, I feel as though they're doing fairly well. I've explained Michaela's situation to them plenty of times (in kidspeak, of course), and they seem to cope with her idiosyncrisies and troubles as best as you could expect from 2-6 yr olds. But yet, there's a part of me that wonders if they won't be suffering mentally by their weird situation in life. By the fact that I'm gone with her a lot. Or that I have to allow her to do some things that I won't allow them. Or that they always have to watch out for their big sister. Maybe it's all just normal to them, since they don't really know any different. At least, they don't now. What about when they're older and their friends don't have handicapped siblings that they have to treat differently? Are they going to resent her or us for how we've handled these various life situations? I don't know that I've thought of it before now......

Never Too Late....

I guess I shoulda done this years ago, seeing how we don't live close to family, and the phone isn't as cheap ;) So here's my attempt to do online journaling.....Lord knows I can't seem to do the hand-written version.

Hate to start off on a bad note, but perhaps it's the reason why I need to do this....to get my thoughts out....vent a little (stop having to repeat myself?).

So it's official: Michaela has LGS (Lennox Gastaut Syndrome). Not that we're surprised or anything-definately not. You can't have a child with uncontrollable seizures for 5 years and not expect them to drop this bomb at some time. But then again, who's ever ready to hear that your child's brain will degenerate into a big ball of seizure soup and there's nothing they can do about it?? Up until now, it's always been, "If we can just get the seizures under control, she'll do better," "When she has good control, she'll start talking better (walking, doing, etc)." Always hope, always striving, reaching, looking, researching, testing. Now....nothing. Just "quality of life." Interesting. I wonder if that also refers to mine.

Don't get me wrong. I'm not upset, really. For me, anyway. Devastated? I think that came and went when I held her during that first seizure. All my hopes and dreams for this child flew out the window into that cold morning air while she writhed and gurgled. Turned blue. Life changed then. And I think it probably does again now. No one is supposed to outlive their children. No one is supposed to change their child's diaper when they're 20. We were supposed to have this family early and then have time together when they all move out and get married when we're in our 40s---how cool that would've been.

I hate to sound like I'm complaining. Cuz honestly I'm not. Just musing. Just rambling. Life IS good, and that's why I named this blog what I did. I don't have anything to complain about. I still have her, and Chris and the others. But there's a part of me that just wants to run away from EPILEPSY. The part of me that wants my little girl to skip rope and ride a bike and put her hair in a ponytail. I'm so sick and tired of meds! How wonderful would it be to go to bed at night and not have to dose out medication. It's possible I won't know until I have a miracle or I've lost my oldest child......

Yet overall, things are pretty awesome......life's pretty wonderful.