Been awhile....

My aunt died on Tuesday, so I've been gone since Wednesday. Back home to New England. Pretty cold here. I'm sure I'll have plenty to say when life gets back to normal....

Someone Must've Wished Me a Crazy Christmas

Wow! It's been over a week since I've posted. Shows how busy I've been. Actually, I've wanted to sit down and write a couple of times this past week, but with all that I've had to do, I felt guilty for stopping for more than checking my email. But this week's not so bad, so here's an update:

~Michaela's getting her equipment. Hoorah! No more frustration over that. I called the Medical Equipment company and they were like, "So who's your case manager at Blue Cross?" HUH? Whatsa case manager? Come to find out, Blue Cross has this neat little department that is there solely to help ME. Very wonderful. I got a case manager named Mary Anne, and if I didn't know better, I'd say she was sent from God to be my personal philanthropist. No joke. This lady bent over backwards for me. "Of course you need that dear!", "We'll get it right away, before your deductible comes due again!" HELLO? Am I dreaming? Did I dial the wrong number? My insurance company wants to pay for things? But that's how it worked out. AND, check this out! The VP of BLUE CROSS told the DME company, "Just get her what she needs and don't charge her." Um, needless to say I was shocked, but overall, I just think it pays to pray! I'm guessing it was 8k worth of equipment that I would've had to pay co-pays on. Now THAT's a MIRACLE.

~Got almost all the Medicaid info in. It's still gonna take quite a while. I hooked up with a nice lady from an "aging center" who actually knew what she was talking about. She told me what to get together and then she came over last Thursday to fill out some more paperwork to send to Montgomery. It was so nice to talk to someone who understands the process....or knows that there actually IS a process! Now I'm just waiting on Chief's medical records to come in from Georgia.....(yes, Georgia, don't ask!)

~Was up to my eyebrows in laundry! Didn't fold or put away hardly anything. And since my laundry room should be my next PFTD, 8 loads of washed, dried, and pilfered through clothing didn't help me cope with my very busy week.

~Haven't finished my Christmas shopping yet! I hate being a last minute shopper!

~Trying to find the right size diapers for Boo. She's been out of the size 6s for a while now. Most of the time, she's been continent enough to use Big Kid pullups (you know, for the kids who wet at night?), but right now she's just not able to use the toilet, and those pull-ups are NOT for BMs. So we've tried the geriatric diapers in the pharmacy at Walmart, but their smalls are still too big. I was told by a well-meaning friend that the Health dept. should have a program for me. Yeah right. Not in Alabama. I'm learning that their social services departments are less than admirable (and less than knowledgeable, and less then competant, and less than....you get the idea). So I called Home health for my county. Again, no help. Which is weird, because you'd think home health people have to deal with this all the time. But the lady on the phone was stuck on which insurance company I had. This was a moot point. My insurance won't cover diapers and they never have; we've always bought them, and I just need to know where to get them. But alas, silly me. I was barking up the wrong tree. However, she DID mention calling my pharmacy to see if they could help. This seemed to be worthwhile advice, 'cuz my pharmacist didn't blow me off (amazing!). She called a supplier and got some shipped in for me to try. We'll see how it goes. But at $15 for 17 diapers...I sure hope they wipe her backside when she's done using them!

~Michaela's physical therapist and I talked about how she's getting this new wheelchair in a few weeks. I needed to make sure it fit right and the house was accommodating, etc, so I was telling her how I wasn't sure how we were going to get a ramp put in. Our old house was even with the ground, so this was not a problem. But now, the new house is 3-4 stairs up, and a ramp will be necessary. So SHE says, "Oh, well there's this guy who told me once that if I ever knew of someone who needed a ramp, just to let him know because his group builds them for people. I'll get in touch with him." Very cool. I mean, here I was grinding numbers in my mind about how much it was going to cost, and now I don't really have to worry about it at all. I'm totally psyched. Not to mention, my insurance company won't pay for the portable ramps (which I really feel we should have on hand--everyone here has stairs), but I found one online for $50 instead of the normal $500. Double cool.

I hope I'm not so busy when the holidays are past. Well....maybe that's wishful thinking.....

Hope everyone has a Merry, Safe, and Cheerful Holiday Season!

Weekend Recipe

I'm annoyed.

Michaela's doing much better. At least, she's not in a stupor. She's actually talking in sentences! That's good, right? Of course! So why am I so annoyed?

Because I never know what to expect from this disease. One minute, I think I have to tube-feed her, the next she's grabbing food and shoving it in her mouth! OK, maybe it's not one minute to the next, but it can be one morning to the afternoon! And so I don't want to be without the things I need that I have to rent from the home-health company, for those times when she can't eat. That's no simple process. I have to get a prescription from the Chief, then call the home health agency and get the paperwork going, and then they have to drive it up to me 'cuz they're an hour-and-a-half away. Then if she's doing better a couple days after that, I want to send it back so I don't have to pay any more co-pays on equipment I'm not using. VERY FRUSTRATING.

Back in February, we were told that we could have lost her because she was starving to death. We really didn't know that it was that severe. I only knew that I couldn't seem to get her to eat enough of the special diet food that I knew she needed to have. I just figured she was being stubborn because the diet wasn't always the most palatable thing out there. Come to find out, she was suffering from apraxia in her throat. Which means she couldn't eat even if she wanted to. And even though I generally am not an alarmist, this situation freaks me out to the point where I try to act as soon as possible. I mean, she doesn't have the g-tube for kicks. If she can't eat and I have to feed her via the tube, then she has to eat every 2 hours, each feeding taking approximately 20 minutes. NO. I'm sorry. That's crazy--she's not my only kid! So the pump feeds her at night, and I don't have to feed her barely at all during the day. If she wants something and I feel she won't aspirate her food, then I can give it to her--it's a bonus. No pressure.

Undoubtedly, I'm grateful that her apraxia is not a permenant condition. If she's doing well neurologically, then she can usually eat too. This is nothing but good news. I'm not complaining about this, but the continuous "up and down" complicates things for me. I have to constantly be making judgment calls. That's why all the fuss. Sounds trivial, maybe, but I just can't stand being seen as a hypochondriac mother. "Yeah she calls and needs this and that, but she just freaks out over nothing and the kid is fine the next day." NOPE. Sorry. Wrong number. I'm not like that and I can't stand ever giving that impression. SOOOOOO annoying.

****

But the weekend was good! Renee's baby shower was this past Saturday. A much needed respite for me. Always good to get together with the ladies and eat and chat and spoil a future mom. Tres enjoyable.

Then she and Dave came over that night to play some Rook. It was me and Dave against her and Chris. We swamped them. It was fun. Another good stress reliever. Except for the fact that the guys were extremely, um, shall we say "gassy"? The room was very likely green. Then they broke out the warm Dr. Pepper---bad news bears. The burping contest was pretty impressive, however. Renee and I just laughed and laughed ;)

Here's a picture of Dave and Chris at Jeremy and Nicky's wedding. Chris is the shorter guy propped up by Dave on his left. Photo courtesy of Jonathan's website (he's the guy on Dave's left):


And then on Sunday the announcement was made about Michaela's condition and how serious it is. This is a good thing. When people know, they understand more. And in my church, when people know, they pray. This is a very good thing. Cuz when it all comes down to it, I know man can't fix her. But God can. And I'm looking forward to the day when He does.

Overall, a very good weekend, with a dash of stress.

...It Was the Worst of Times...

Michaela has officially crashed. She's stopped talking. Shs's having too many strong seizures while she's asleep. They just destroy her ability to function during the day. I've gone ahead and ordered the feeding pump. I'm still holding out on the wheelchair. She generally just sits in one spot, and if she has to walk, she can, but I have to guide her--she walks like a drunk.

I'm tired of all the constant drooling....sigh.

We just changed her current drug a little last night. I wonder if that's part of the problem.

We'll see. The neurologist should be getting back to me sometime today.

Happy Birthday, Brian

A big "Happy Birthday" goes out to my dear friend Brian. He's one of 2 childhood friends that I'm still in touch with. In fact, he lives about 3 streets away--another Yankee Transplant. He and his wife Amie are my very closest friends; so close, that we're practically family.

He's 31 today, and even if he never reads this blog, I still want to let him know that we love him and pray the best for him.

Happy B-Day Bri-Guy!

Ace of Base

I have five kids. And yes, my hands are full, but my thought on that is this: since humans only have 2 hands, anyone with more than 1 kid, technically has their "hands full". 5 kids isn't that bad. We've thought about having 6. Once we got past 3, it wasn't that big a deal. I can't imagine life without a bunch of little munchkins around (see pic). I find that things are too slow and relatively "boring" when I only have 1 or 2 here. (Although I DO have more time for blogging when that happens!)

However, there are some drawbacks to having a basketball team of midgets living in my house. One of them, is that they have this compulsion to run around, and my house is small. Too small for running around. You wanna sit? Fine, we can handle that. But the house was just not built for marathons, flat out.

Or, hide and seek, for that matter.

This is the new game of choice amongst my darlings. Of course, not all of them play. Michaela can't understand the game (but if she's hyper enough, she might join in the giggling and "running"), and Asher is too little (crawlers never win). But my 3 in the middle have been having a blast for days with this game. And it can be quite comical for me to watch them. 'Cuz Noah's the only one who could count when this fetish started. He's 6 and already in the 2nd grade, so he can count to infinity. But the 4 and 2 year old were just not there yet. They would have their turn to count and they would throw out a random conglomerate of numbers:

"1! 2! 14! 29! 3!"

What game is this? Football?!? Hehehehe ;)

But Noah didn't care, even though things weren't quite fair. And now? Both of the littler ones can count fairly well! Even Libby, the 2 year old, can now count to 11! Homeschooling for Dummies!

But the funniest thing about this is the "Base". Base is usually my loveseat. And even though I didn't usually play this way as a child, I do remember playing this version once I got older. My kids won't play any other way. But, see, they play wrong. Hide and Seek has been reduced to "Run for Base as Soon as They're Done Counting". And I do mean RUN. Poor Libby never wins. The boys "hide", but then they sneak around to wherever she isn't, and then book it for the base. Then they laugh hysterically. And it starts all over again.

It's been like this for days, and even when my little neices and nephews are over, their playing "Base". Although my house CANNOT accomodate 10-12 kids playing this running thing of a game!

Kids are kinda funny, huh? How much money do we spend on toys? And all we needed was a good loveseat!

Medicaid Woes

I'm trying to get Michaela on Medicaid. Actually, we make too much $$$ to qualify for SOBRA Medicaid (even with one income and 5 kids--go figure), but I heard about something called a "Medicaid Waiver Program" that is not income based. Cool. We have pretty decent insurance as it is, but there's always copays and deductibles and uncovered fees (like wheelchairs and enteral pumps) that can be overwhelming for our budget. If we could just get Medicaid for those fees, then I won't have a whole lot to worry about--even for unexpected situations.

The Waiver works like this:

~Someone has a serious debilitating condition (mental retardation, CP, MS, HIV, etc)
~They have certain needs associated with that condition (bathing, nursing, medical equipment, etc)
~The State is compelled to provide services for people within these categories up to a predetermined number
~They get Medicaid AND whatever services provided for under the waiver
~All for FREE with no regard for income--simply because they got the short end of the stick

OK, so this is what I've learned, and I'm understandably excited about this. Not only will Medicaid pick up the tab for some of her medical fees, BUT they will also provide some services IN MY HOME, at no cost to me. Simply because I have a mentally handicapped child. I could really use those services sometimes too. At the beginning of the year, she was completely incompetant, and I was completely pregnant. It was all but impossible for me to bathe her without hurting myself. If it weren't for my dear friend Nicky, I don't know what I would have done. Come to find out, Medicaid waiver would've been able to help me with that.

Well, there's one catch: the Government doesn't want me to find out about this. They really don't want to pry their slimey fingers off of our tax money. Therefore, I have been engaged in the most incredibly ludicrous "goose-chase" I think I've ever been on! I CANNOT get a straight answer out of these people! I cannot get anyone on the phone who knows what I'm talking about
and will direct me to the right place. I've been shuffled from phone number to voice mail to agency so many times I can't keep count.

So I called someone completely unrelated, but who knows their stuff when it comes to advocating for handicapped people. When I told him my situation, he knew exactly what I was going through. He told me that in order to get the services, I have to KNOW what they're supposed to do so I can make them do it. Otherwise they won't do it, and even lie to not do it! How outrageous is that!?! I have to know how some government peon in a cubicle is supposed to do their job so I can get the services for my daughter that's entitled to her? Arrrgghhhh!

Well, they've met their match. Cuz you know what? I know just how to do it. I know just how to be the nicest person they've ever met, and all the while telling them to their face that they're lying to me and that they have to cough up the info. No problem. I'm just too persisitent to let a deal like this get away, especially when it's right there for the taking. Not to mention, I got the number for the head honcho. The Big Boss for the entire state. Her personal number.

Just wait. I'll have her on this thing within a week.

Maybe It's Not "Selective Hearing"

Ok, so played some Pictionary last night (remember that one?). Love this game and haven't played in years until a couple months ago when I found an all-but-unused copy of it for like 3 bucks.

Always thought that you could only be really good at the game if you could, you know, draw. But now I'm starting to think that it goes much deeper than that. You can get by with stick figures and squiggle marks, no prob, but you cannot win unless you understand one thing....

The opposite sex.

Well, if you play like WE do, guys against girls.

Come to find out, the English language IS gender specific. No, not like Spanish where an "a" on the end means feminine and an "o" means masculine. It's more like, some words are "girl words" and some are definately "guy words".

For example: Josh and Dave were against Me, Katie, Tesia, and Renee (yes, the guys wanted it to be 4 v 2........they'll learn). It was an "All Play" and the word was "drapes". Sorry, they were doomed. Guys just can't handle "drapes". Male brains stop at "curtains", with an occasional "blinds", but never "drapes". Or "valance" for that matter. Those are just girl words.

Now, it goes both ways, but honestly I think girls tend to avail themselves to guy words a whole lot more than guys learn girl words. Last night proved it.

We got "sniper".

Now, that's a total guy word. But we got it. AND we got drapes. So who do YOU think won......?

Yeah, the girls DOMINATED!!

Hey, isn't that a guy word?

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.