I hate seizures...

Samantha's seizures have gotten worse again lately. We have to drive six hours to see her specialist at the end of February to see if there is anything else we can do to help control them. I'm not sure there is anything else we can do. She has an implanted device called a Vegal Nerve Stimulator, that is like a pacemaker for seizures, and she has already been on almost every anticonvulsant available in the United States. We had fifth Sunday singing at church tonight, and we thought she had fallen asleep during the service. That is until I tried to wake her up. She was having seizures and we had to rush her home to give her emergency medication. She is fine now, but I feel so helpless.

I hate to see her like this.

One of the ladies that goes to church with us kept telling me how scared she was, and how she didn't think she could handle it to see one of her kids go through the things Sam has. No one ever thinks they could handle it. I certainly didn't. Not until it WAS my child. I never thought I was a strong enough person to do CPR on both my kids... But I have. I never thought I could handle watching my daughter go through more operations and tests before her sixth birthday than most people experience their entire lives. I never thought I could handle watching my son stop breathing time after time, and have a kidney removed at three weeks old.

Its amazing what you can handle when it is your child.

I never knew, before my kids were born, how absolutely in love with someone I could be. When it comes right down to it, the reality is, unconditional love is such a very rare thing. I am a very lucky woman, because I know that kind of love, here and now. My children, even with all their problems, are the center of my universe. Its hard to describe to someone who doesn't have children, the emotions that well up inside you when your kids are sick.

I wish that Samantha's seizures could be brought out and turned into a physical form, that I could beat the crap out of. I wish I could stop them, and regrow the mylan around her brain and nerves with the sheer force of my love for her. I wish I could wrap my soul around that missing chunk of her fifteenth chromosome, and magically remove Angelman Syndrome from our lives.

But I cant. I am helpless against this enemy that threatens to kill my little girl every hour of every day. All I can do is sit here and cry, and pray that I don't loose her. I never cry where she can see me. I don't want her to know how scared I am every day for her. I don't want her to know that I am so much weaker than I let on. I am so tired of having to fight so hard just to keep her healthy. But I will keep fighting for her, because she cant fight for herself, and because I will never loose hope that maybe...

just maybe...

my love for her will make a difference one day.

My tattoo...

This is another one of those rare photos that make me feel pretty. This one was taken by a dear friend of mine Shalina Christesson, shortly after I got my tattoo. The quality of this photo is much better on the actual print, but the scanner had problems with it. You get the basic impression of the photo however, so I'm not too disgruntled with it. One of these days I will share some of my own photography, but for now... Enjoy Shalina's work!

Darrell's birthday today...

Its Darrell's birthday today!

Happy Birthday Honey... I love you!!!

Other than that... I'm kind of boring today, so here are some links to some other people's blogs I enjoy reading...

The Splintered Mind by Douglas Cootey

dooce

Criminally Stoopid

Hall of the Slain

Great Grandparents...

I have been thinking of my Great Grandmother a lot this morning for some reason. She was a wonderful lady, and even though I didn't get to see her much, she was always one of my favorite people. She was my first pen pal. We lived halfway across the country from each other the whole time I was growing up, but she always sent a weather report in her letters to me, as if I would need to know what to pack to visit her. I think maybe she hoped I would just show up on her doorstep one day for a visit. I remember when I was hitting my hormonal teenage years and started having conflict with my Mom (I was a teenager... That's what they do...), I used to think I would hop a train to IL and run away to live with her. I had this naive fantasy that I could hop aboard any train in town, and it would somehow magically end up running on the tracks just behind her house. Its silly to think about it now, but I think part of it was... I just really missed getting to see her. We took family trips to see her and Grandpa several times when I was little, and I would sit in Grandpa's lap listening to stories and looking out the window, or I would sit on the stairs outside their bedroom and wait for someone to walk by and notice me there. I don't remember a lot about our visits anymore, and that makes me a little sad, but the things I do remember are wonderful. Like the fluffy down mattress in the spare room that we weren't supposed to mess with, because it would have to be refluffed, but we always did anyway. It is possible that the few memories I have of my visits there have become rose tinted after all these years, and with the passing of my Great Grandparents, but they will always be just that to me... Great. I think that's one of the reasons that I want my kids to spend as much time as they can with their Great Grandparents. Because I know how precious those memories are to me, and I want my kids to have similar ones to look back on too. And even if it does irritate me from time to time... That's what Great Grandparents are for... Feeding you things you shouldn't have for breakfast... And giving you a safe place to run away to... Even if its only in your memories...

I'm not sure what brought on this flood of fond memories...

Maybe its the chocolate cake I'm having for breakfast...

My soap box...

I often get asked a question that really riles me up...

Do you work? Or the government offices version... Do you work outside the home?
And then there are people like my cousin Rossi, who assume that since I don't have a "job" that I should be able to do things for them at a moments notice. Like last year when she got mad at me because I would not pick up her son after school every day, and keep him for her for a few hours. (And even though I love the little heathen, he reminds me of some twisted combination of 'Dennis the menace' and 'Chucky'.) "After all, you don't work, and it would give you a little extra money..."

OK... First of all... Extra money? What the heck is that? Secondly... People that seriously ask if I work need to be immediately punched in the nose!

Lets start with the basics.

I have to keep in my memory at all times, Samantha's medications, allergies, doctors names, and surgical history. Her medication list includes, but is not limited to: Keppra, Klonopin, Nootrapil, BiCytra, Miralax, and Diastat. We may be adding one more when the doctor calls me back today. I have to remember to call in refills on all of her medications AND remember to go to the pharmacy to pick them up. And they all run out at different times, so I am at the pharmacy for one thing or another at least three times a week. Samantha is allergic to Lamictal, Rocephen, and on occasion oxygen. I have to pick up my 40 pound, 3 1/2 foot tall six year old and carry her to the toilet every two hours because she doesn't walk yet. I then have to sit with her while she goes to the bathroom, then pick her up with one hand, wipe and flush with the other, then I have to lift her and carry her back down the hallway to get her re-dressed. Her medicine has to be crushed, mixed and given through her g button three times a day. If I feed her table food by mouth, that takes at least thirty minutes of preparation and feeding time. We feed her four times a day at least. She has to spend at least thirty minutes a day in her gait trainer trying to learn to walk. She needs to have a bath every other day, goes to bed at ten every night, and can't sleep without her fuzzy cover.

I have to remember that Auron only has one kidney, and that he pukes up the two most common antibiotic used for kidney infections. His favorite bedtime toy is an ugly yellow giraffe that is older than me. He needs a bath every three days, but any more than that and his excema acts up so bad his skin looks like it will split. I have to try to find time to do the dishes, laundry, and vacuum the living room floor. The kids spend a lot of time in the floor, and pick up EVERYTHING!

I have to feed the cat, feed the fish, clean out the litter box, and remember countless appointments. None of this even includes the things I have to remember to do for me! When I do get the chance to leave the house things get even more complicated. I haven't even had the time to paint my toenails in over a year! And I am currently typing this post with a sick wiggling baby in my lap!

I feel like I can compare my self to a circus clown, juggling 40 angry hamsters while riding a unicycle, backwards, while wearing stilts!

Do I work? HA!

It makes me feel pretty...

Ok... So I know this picture is over a year old, but it makes me feel pretty so I wanted to post it anyway. In case you can't tell... (duh)... Its Darrell and I on our wedding day- June 26, 2004. I love this picture for several reasons... It does make me feel pretty, but I also love the fact that you can see how happy we are in this picture. The down side to having blue eyes however, is that in almost all of my wedding pictures I had red eye, and looked like "demon bride", or like in this one, my eyes completely white out and make me look like I'm about to have a seizure. Oh, Well! At least my husband looks hot in all of them!

(P.S. All the GREAT looking flowers you see are actually silk arrangements done by none other than my wonderfully talented Mom! *QUICK PLUG* Smiling Angel Crafts - Odessa, Texas - for ALL your floral needs or wants!)

Love you Mom!!!!

I hate mirrors...

I hate mirrors, and avoid them when at all possible. I didn't always...
From the time I was about 13 until I was 18 I was knock dead gorgeous. I'm not just being vain either. I was a true hottie. I was an actress and model. I was very popular, and even though I pretended at the time that I didn't know how attractive I was, I knew. I spent hours in front of a mirror every day figuring out how to sit, or smile, or bat my eyes in just the perfect manner to maximize the aura of beauty. My makeup was well thought out to make my eyes seem bigger and more stunningly blue, and my lips more full and pouty. My clothing was carefully selected to make my legs seem longer, my waist even tinier, and the entire outfit was to be just unusual enough to draw attention, with out looking like I tried too hard. I was beautiful and I knew it. I LOVED all the attention that I got. I think that is the problem. I remember what it was to be extremely attractive, and I know the reality is...
I'm not anymore.
Don't get me wrong... I don't think I'm necessarily ugly. In fact, if you disregard the pubescent skin issues I seem to be having, I might consider myself vaguely pretty from the neck up. I have pretty eyes, and nice hair, and my smile isn't too bad. From the neck down... Well, that's another story entirely. I am not shaped right. I remember reading at one point that the perfect measurements for a woman were 36-26-36. A perfect hourglass figure. I had that once. Now its more along the lines of... 46-37-46. I'm a chubby hourglass, which wouldn't be so bad in itself, except I now have these rolls and flaps and folds where there should not be rolls and flaps and folds. Curvy is one thing, lumpy is completely different.
I feel like a play dough sculpture gone horribly wrong, or one if those little budda looking fertility goddesses with the huge boobs. And forget about finding a dress that fits me right. For a shirt I need a size 18 or 20, for pants I need a size 14, and if a shirt fits across my bust then it is way baggy around my waist.
I change in the dark when at all possible. I keep my back turned to the mirrors until I am completely dressed, and even when I turn around, I look any where but at myself. I stack things on the bathroom counter so there isn't so much mirror staring back at me, and I can't remember the last time I tried to clean them.
I hate mirrors.

I wonder...

I want to know who the genius was that decided you could get ten tacos out of one pound of hamburger meat. This person's math skills are way worse than mine, and mine are pretty hideous. And for that matter, who decided that pounds should be made into lbs? Where do you get an "l" and a "b" out of pound? Maybe it was the same guy who put ten hot dogs in a pack, but twelve hot dog buns. And, does anyone REALLY know how many packages of each you would have to buy to make it come out even? That is one of those age old questions like:
Why do I always get behind the "slow guy" in the "fast" lane?
Why does it always rain the day after you wash your car?
Why does the baby wake up ten minutes after I doze off, no matter what time it is?
Why do we spend so much of our youth trying to grow up, and so much of the rest of it wondering where the time went?
Why can't I get the voices in my head to behave themselves so I can get some rest?
................. Hum............ Guess I'll never know.........

My sweet boys...

This is my favorite picture of Darrell & Auron.

My WONDERFUL Husband...

For those of you who may not know me... Let me just state that I have the absolute

BEST HUSBAND ON EARTH!!!!!

That having been said... I'm sure you want to know why I feel this way. There is no way I can list all the reasons I think he is such a wonderful guy. The post would be way too long for any mere mortal to read in one sitting. (Not to mention the great things he does that are... Well... Unmentionable.) This is after all a G rated blog. (For the most part.) So I will attempt to give you a short list of the reasons my husband is so phenomenal.

Reason One:

He puts up with me.

If you are sitting there wondering what I mean by that, then you are one of those people who has never met me. I can be the most irrational person you have ever met. My brain and my heart are constantly fighting. I am manic depressive, which means one day I bounce off the walls and can't sleep because I am on such a natural high, and the next I bawl for an hour straight because I forgot to clean out the litter box and feel stupid. Imagine never ending PMS type mood swings. He takes this all in stride, and more often than not, knows just the perfect thing to say to make me feel better.

Reason Two:

He fell in love with my daughter first.

Darrell is not Samantha's biological father. We met Darrell a few months before Samantha's second birthday. I am not going to go into vivid detail about her paternal chromosome donor's departure, mainly because leaving was the best thing he ever did for us. Most of the people I brought to the house to meet Samantha had no idea how to interact with her. Especially guys. For some reason, the fact that she is disabled freaked people out. Most people would look at her, tell me she was cute, and promptly go sit on the opposite side of the room. Not Darrell. He walked in the door, took one look at her, and plopped down in the floor next to her. He spent the entire evening they first met talking to her and playing with her in my living room floor. A few months after that I asked him if he would be her Godfather. He didn't hesitate. I asked him to take some time and think about the responsibility of it before he gave me an answer, he didn't need the time. He already loved her like she was his own. It wasn't until four months later that he and I started seeing each other. He still jokes from time to time that he married me for my daughter.

Reason Three:

He doesn't try to "fix" me.

As mentioned in reason one, I can be a bit disfunctional from time to time. I KNOW this. I know when it is happening, I just can't seem to control it. I beat myself up relentlessly about my little episodes, and always have. The LAST thing I need when I am in the middle of a breakdown is someone telling me to get a grip, or deal with it, or what is wrong with you?! That doesn't do anything but aggravate the little angry voices in my head that are already telling me what an idiot I am. Darrell just calmly sits there until I stop talking, and then depending on the particular situation, says "I wish there was something I could do to help." or "I love you, and I'm sorry your having such a bad day." or just sits and holds me while I cry. And he never sounds condescending. Just supportive and genuine. I know there are times when he has to get frustrated with me, but he never takes it out on me. Its wonderful that I don't feel broken around him, even if I am a little cracked.

Reason Four:

He treats me as an equal.

This may sound like a "well..Duh!", but trust me, its a biggie. I am a full time mom. I do not bring any income into our household. So many men (and a disturbing number of women) out there think of full time moms as some sort of sub human creature, who is too stupid or lazy to get a "real" job. Raising children IS a real job. Most of the career women out in the world have no idea how easy their lives are. They look down on women who choose to stay home and raise their children, because in their minds it contributes nothing to society. Darrell knows better. He wants our kids to have a parent to call if something happens at school. He wants our children to know that they can't get away with becoming criminals, because Mom won't stand for it. He knows I want to raise our children with all the love and support I can offer, and he stands by that decision without acting like my job is worth less than his.

Reason Five:

He lets me run away.

With all the hard work that Darrell does to bring home a paycheck to support our family, he still finds time to watch the baby for a few hours some mornings so I can catch up a bit on my sleep. He watched BOTH kids by himself on Wednesday for three hours, so I could go walk the mall and hang out with my best friend. Thursday he watched Auron so Samantha and I could run away and have some much needed quality time together. He doesn't expect me to raise the kids alone. He helps whenever he can. That is truly a rare find in a guy.

These are just a very few of the reasons why I am so in love with my husband. I found a wonderful man, and even though I wondered at the time... He was SO worth the three year wait it took to convince him to keep me. I just had to brag!

Wean is a four letter word....

I have been having quite a bit of trouble lately with my brain. I have been depressed quite a bit, not just for the sake of being depressed, but because my ADD is in full swing and I keep forgetting important things. Samantha is going to run out of one of her medications because I have been too scatterbrained to remember to deposit the money to order it. Once I do finally get around to ordering it, the medication has to come from Great Britain and takes two weeks to arrive. That is just one of many things I have screwed up over the past couple of months. I have medication that helps me keep things straight in my head, but unfortunately it is not safe for me to take while nursing the baby.

So I found myself today standing in the grocery store staring at the rack of infant formula.

I know now why weaning is so difficult. It starts at the store.

How do you know which brand out of the million and a half available is going to be best for your baby? Should you use regular or soy? What exactly IS a 'comfort protein', and how does it differ from a regular protein? Is the one in the pretty purple can better than the one in the pretty gold can? Would I rather my baby smile like the picture on one can or sleep like the picture on another?

And once you decide on a formula to try the dilemma turns into...

How do I get the baby to stop pulling at my shirt because he wants to nurse instead of taking the cup of formula? How do I stop feeling guilty about wanting to wean him so I can take my meds and think straight again? How am I supposed to handle the funny faces he gives me when presented with a cup of this non-mom juice? If he doesn't drink the twelve dollar a can formula, can I feed it to the cat so it doesn't go to waste? I wonder how it would taste in coffee? Why does he keep looking at me like I just killed a puppy?

OK... So we have discovered that taking his boob canteen away from him may be harder than originally thought. I had hoped he would like the taste of formula, and suddenly decide that Mom juice was not such a necessity. I guess I set my hopes too high. My grandparents will just LOVE that! My Grandfather has been asking when I was going to wean the baby since before he was born.

Oh... Well... I guess I get to stay scatterbrained for awhile. I just hope I don't forget one of the kids in the car one day... They could hold that against me for a lot longer than weaning...

I don't know you... but Thanks!

Mothers of children with disabilities worthy of praise
By Lori Borgman Knight Ridder/Tribune News Service

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants aperfectly healthy baby with a round head, rosebudlips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump andfire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one -- saluting you,painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down inthe motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a wonder.

Thank you so much Lori! I needed that more than you could know right now. Today is my twenty sixth birthday, and I have spent all day wondering why the ONE DAY A YEAR that is supposed to be special for ME always seems to leave me feeling so crappy. I think I'm in one of those "God on strike" times. I spend so much time taking care of the kids with very little acknowledgment because everyone is just used to this being my life, that there are days like today that I need to feel special, and don't. I feel very plain and ordinary, and even though I know that they mean well (and are probably right), I get very tired of people telling me that God is in control of everything when I feel like he has forgotten about me. I know the feeling will pass, it always does, but its nice to have it acknowledged as a legitimate feeling. (even if it was in a column written by someone who doesn't even know me!) Thanks Again!

Happy 2006!!!!

Happy New Year!!!!! I didn't get to toast in the new year because I am still nursing the baby, but I did get a chance to go to an old friend's house to hang out. I left Darrell and Samantha home and took the baby(still nursing remember). I had a blast! Real ADULT conversation!!! (NO, NOT LIKE ADULT MOVIE) It was great! Not that Darrell and I don't have adult conversations... but most of our talking involves what the kids did or didn't do, or what bills we can and can't pay. Oh... and of course LOTS of "I love you's". We are still in that sickly sweet in love stage... I hope it never wears off. I don't think it will, because we have been through so much together already, and all the crappy stuff just seems to make us closer. I love that we can sit in the same room for hours and not have to fill up space with words. Just being together is enough for us. I just got my new years kiss from my husband, who up until he got up to give me a kiss, had been sitting quietly watching TV. Overall, I think I am feeling a bit more hopeful about the coming year than I was a few days ago. Not that things have gotten much better... NOOOOOOO SIR..... That would make life too easy. But a good night of conversation with dear friends tends to lift the spirit no matter what is going on. Maybe I am just WAY burned out. I don't know why... Its not like I do anything... (for those of you who don't know me that was a lot of sarcasm) Most of the people there tonight I have known for ten years or more... Mostly more... But we wont dwell on that. :) These people have seen all the ups and downs (and I don't just mean my weight) and still love me anyway. I have had more than my share of 'fair weather' friends, and these guys definitely do not fit that description. I know I could call these guys in a jam, and they would try their best to help out. Its nice to know they are still out there, because I was beginning to feel very lonely. Having no one but a ten month old to talk to all day will do that to a girl. OK... I have started to ramble, and I'm sleepy so I am going to bed.