Roller Coaster

He wasn't lying. The doctor that first gave me Sophia's diagnosis, Dr. Fernando Acosta (whom I had only the one meeting with, but the name is branded in my brain), he said it would be a long hard road. He said it would be a roller coaster, and to try not to go too high with the highs and not to go too low with the lows. I reread two posts back, Christmas time 2010, and I was high up there. I just knew the ketogenic diet would be it. Look how it's working! And then everything got all fucked up.

We've been on Vigabatrin for about a week. The first few days had not a seizure in sight. Yesterday there were 4 clusters and today at least 3. I'll admit I got a little excited. I was filled with fear and trepidation, but I did get excited. And now the roller coaster descends. Last year I would have said, "We have two more dosage increases, so hopefully what we were seeing at the beginning of the week was just a preview!" And although I might actually say the same thing this year, in my head and heart I have lost almost all of my hope. I still have the desperate hope, but all the optimistic hope is all used up. I know my take away is to ALSO not go so low with the lows. Unfortunately, that isn't my personality type. I am prone to depression, you know. Still, that isn't a reason not to try.

And I am trying. Trying to be grateful, to be positive, to have hope, to pray. I am trying to find the joy in my life, and I know that it is there. There really is a lot to be had, and I really am getting better at having it. Most of my day isn't this doom and gloom. Most of my day is smiles, and discipline, and hugs, and video games, and chores, and good talks, and good food. But I do think about all that has been stolen from all of us, I just get so... overwhelmed and angry and sad and desperate for it to be over. For everything that was stolen from her to come rushing back into her life. Her tiny precious life. And I play out the end scenario. If the seizures are never controlled, her little body will not stand for it. I will lose my girl if they don't stop or are significantly curbed. And now it looks like nothing will be able to do that except God, and He hasn't yet.

Everything seems so big and huge and awful, and then suddenly it zooms out, and Sophia's defect is indiscernible among the millions and billions of people that were, are, and will be and all of their problems, great and small. And I just feel better. That in the great big huge picture, it just does not matter. All that matters is that she was here, that she got to be more than dust for a moment in time, and I got to be here for that. And I know my mother feels the same about me, and so on, and so on. And to not enjoy her to the fullest extent that I am able seems like a crime. And it helps me to avoid getting onto the roller coaster at all.

Time to Time

I guess that just happens from time to time. I look up and realize I haven't posted anything on here for a year.

I guess I just do not know what to say.

My marriage is going better. A lot better.

I got a job after two years of being a stay at home mom. A really good job.

Matthew is doing so well in preschool. He wrote his name on all of his valentines by himself and ordered broccoli at the restaurant for dinner. So proud.

The epilepsy is going stronger than ever. My child has dozens of seizures a day and hundreds of seizures a week. I feel so so so very defeated. I had so much hope. It is just gone. We start a new drug soon (whenever it comes in the mail), and I am so certain it will not work, I am already planning a retrial of the ketogenic diet. I don't really think that will work either. No matter what we have done, the seizures have just gone up. Up. Up. My sweet girl smiles, crawls, sometimes laughs, and stands. She does not walk. She does not learn. She does not talk. She does not chew. She does not care. She tries so hard, but her piece of shit brain, that I am sure I fucked up, holds her back.

You can see that there is so much to be thankful for. I am just so astonished that her disease is actually worse. I am slayed. My heart was shattered into a million pieces, and I am just now finding the energy to put it all back together again. It is so hard too. I just got this job at this amazing company. I was picked to be in a group of 47 new employees out of 2700 applicants. That is awesome. It is just so hard. I've been all about epilepsy, I don't even know what to do. I don't know how to introduce myself to all these people without talking about it, without telling them how brokenhearted I am. How strange is that? The people who know me, they know I'm just trying to do the best I can with a broken heart. These strangers though, I just don't want them to ask, "What is the deal with this Lady? Something is off." I just want them to know what is it, why I am so off. I just need to let it go. I am just sad, that is a part of my personality right now. I've even lost muscle tone in my face from not smiling. My eyes physically droop more than they used to. Isn't that wild? And sad?

You know, pity doesn't bother me. It is the misunderstanding that bothers me. I'm not the bubbly, confident, put you at ease girl I used to be. I want you to know I used to be that way. But right now, she is taking a time out, I guess. Don't take this version of me too personally. It gets better, I promise.

I'm not even making sense. I told you I didn't know what to say.

Just Has to Happen

Sophie is so unbelievably close to being done with this seizure stuff. This week she has had a fraction of the seizures she was having per week. She has blossomed in front of my eyes. On Christmas, she laughed for the first time in MONTHS. She just rolls all around. Rolls and sits, and then rolls somewhere else and sits. She is so interested. In life. In Matthew. In her toys. She has started fighting sleep. Usually, I would moan and whine, but for her to even care enough about something to lose sleep over it is just AMAZING to me! I love it. I'm thrilled. I'm thankful.

For some reason, and while it may be provincial, I'm not yet quite sure it is the "VOICE OF GOD", it's just an intense desire. I want her off of Topomax. It's her last drug. They halved her dose a couple of months ago, and I just want to be rid of it. It's just not letting go of me, this desire. Monday I am calling to beg our nurse for permission to try. You have to get permission because of insurance, and mostly because it's not really a good idea to go AMA. Mostly that. I just wish I had some other reason than, "I don't really know why, it's a hunch, and all I really have to say, I just really really really think we need to try this". I just don't have much more than that. I'm totally okay with eating my words if I'm wrong, if it's a mistake, I am. I just want to try. Now.

It doesn't shock me that the more Sophie catches up on her development, the more I want to see her walk. She is so beautiful. I don't know why this means SO SO much to me. I just need to see her walk. I NEED to know she wont be one of those kids in a wheelchair. I have no idea what other obstacles are going to be in her path, but she will walk. Until she does, I have no idea how I'm going to stay calm. I'm sure I'll find a way. I just have to see her walk. It has to happen. It just has to happen. Oh please, God, give her walking.

A Month Later

I just reread my post from last month. I started crying all over again. My, that was so terrible. So, so difficult.

I want to share a little story. I had the honor of knowing Beryle Howerton for only a few short months. He was one of the very first adults to love me just the way I was and encourage me to be just the way I was, which, frankly, was a smart ass. I loved him. I felt loved by him. He never sized me up, or kept me at a distance. I was his legacy the moment his son married my mom, I and knew he counted me as such. And I loved him for it. My affection for him was one of those things that just went very deep very fast. It hasn't happened often for me. Really.

My freshman year of high school, he died of a stroke. It was sudden and shocking. I was shocked. I so looked forward to getting to know him more. I am finding it hard to relay this, but I was very moved by his death considering I had met him only 4-5 times.

I was part of the marching band, and the clarinet players were all piled into the bus waiting to go to whatever football field the game would be at. I stood up to make an announcement. With a small timid voice, I told everyone that my mentor has passed and that I would like to dedicate this show to him, to honor him. The few friends I had already made agreed with sympathy in their eyes. One girl, however, made fun of me. She said something about being tired of hearing about my grandpa and me needing to get over it. Something like that. It cut all the way through me. I was suddenly aware of my dramatic need to validate his life and our relationship, to show everyone that I cared for him, and I was ashamed of it now. I sat down with my heart on fire and in my throat. My eyes stung, and I wondered what was even wrong with me that I felt the need to make such a request of practical strangers.

I wonder now if that rude girl had ever experienced a loved one lost? I also now remember the stoic look of another girl who never took any shit and was quick to dress you down. She nodded that she would, indeed, honor Beryle that night, or fancy the whim of a silly freshman. I wonder who she might have been missing that night. I think, now, my request was a little silly, expecting everyone else to care on the same level that I did. However, I think it was kind of brave, sharing my grief like that. Since then, it's been very hard for me to grieve, but I've been learning how. I just wonder how that rude remark might have affected me.

"Your pain is stupid and it makes the rest of us uncomfortable"

"No one cares about what you care about"

I dont know, really. This was just on my mind.

My, This Is a Deep Hole.

I like to read over what I've been writing about to try and get some sort of idea what the whole blog package looks like. Sorry to say it, but here is another downer.

I thought things were grimmish when I wrote that last post. This month, November, has kicked my ass all around the block. I just have to say, first, that there is a whole lot to be thankful for. There really really is. And I am trying my very best to keep some perspective because I know things could start going up tomorrow, and I might be sorry I bitched and whined. However, it seems like experience tells me that until I bitch and moan and groan, things just stay the same, like some kind of purging activity. Though, I don't necessarily believe that life's orchestration is mainly based on my emotional health (though, I do think it has an effect, more and more as time goes on).

ANYWAY. Lets, see, how did this all start. Yes, at the end of Oct. my cousin died. We weren't close by any stretch, but he was family. And I am pretty certain he did not go to Heaven. He apparently had some major beef with God. I don't think or know what I could have done about that, but it was just weird. I am very sad for his family, especially my aunt, who I am close to. To have your baby boy (he was 29) jerked out of your life.... And things were not going well for him either. He was having horrible issues re: being able to see his one year old son. His whole life was caught up in trying to sort all of that out. There was a lot about his death that was tragic.

After that, though it might not seem like a big deal to anyone else, we had daylight savings. That funked Sophia up in a way I had not seen previously. And when Sophia ain't happy, Sugar, Ain't. No. One. Happy. We also started an epilepsy drug wean during that time. For two weeks, that child was 6 kinds of uncomfortable. Of course, her birthday landed smack dab in the middle of all that. Happy Birthday, Sophia, you can't do anything a 7 months can do, and you aren't even happy. Ever. I actually feel very shitty about the 7 month old thing, but I am really torn up about her lack of development. It's not for my sake. Or, you know what, maybe some of it is. She was so so so normal for 6 months and then KaBLOOM. It just kills me that in 6 months almost nothing has changed despite her hard work, the pain she's been through, and frankly, all that praying.

I thought, though, if I could just make it to the 15th. On the 15th, we would go to the hospital, we would start this ketogenic diet, it would solve all of our problems, and hip hip hooray. I should clarify that I didn't have all my hopes hinged on this. I did have good reason to think it would work very well for us, but I also knew just to wait and see based on experience. Well, in four days, girlfriend tripled her seizures. It was a nightmare. Lots of crying, lots of (failed) needle pokes. On Tues they just decided she needed surgery for a boil which required general anesthesia. Things went smoothly, but no one told me, and what was supposed to take 45 min ended up taking 2 hours b/c no one bothered to tell mom that everything was fine. Anyway, they discharged us early since her diet was going well. That was a Weds.

That particular Weds, my Papa had a heart attack that required emergency open heart surgery. When I got home, he was in the ICU 4 hours away. I had a baby on a VERY strict diet with a surgical incision to take care of, so I couldn't even dream of leaving, either taking her with me or leaving her in the care of someone else. I might have if she were normalish, but schedule interruptions aggravate the seizures. So my mom, who had come down to help with my son, had to leave the next day. Well, my early discharge was authorized on the assumption that I would have a lot of help to get all the new things taken care of (that, two weeks later, I am STILL trying to wrap up). So that made it administratively hard for me, but also, there is the fact that my granddad is probably not going to last the night.

He did, and the next. I wish I could say, "And then he pulled through!", but no, this is my story of my shitty month, remember. His three kids took him off of the ventilator and he died on Sunday. Less tragic in the way that he really did make the most of his last years. The night before he had his heart attack, he was out swing dancing! He was in his mid 80's! I know he was saved, so I know I'll see him again. Thank God. What really sucks about his death for me is that I spent so much time judging him. On one hand, he had made the bed, and I was happy to let him lie in it. He did something things that were very serious in my eyes against his kids over his life, and even in the last 5 years. However, in talking to my mom about it a few weeks ago, she said he really has been changing over the last year. I knew he had found church since my nanny died, but it seems like he finally found Jesus as well. I hope so. I was just really judgmental towards him. No mercy. Admittedly, his care wasn't in my hands, so my opinions didn't affect him at all, but I do regret several of the things I've said and thought about him. I even decided to talk to him since his death and ask for forgiveness. Did I mention that the aunt that lost her son, that this was her dad? Yeah. Wow that sucks.

Oh yeah, and they kicked Sophia out of the nursery at church until they have a doctor's note. I've had a hard time getting that from my doc and I STILL don't know if it says all the right stuff (I'm supposed to fax it tomorrow). They lady Ive been connected with since this epilepsy thing started was heart broken to tell me this, and I really appreciated that. But liability is liability, and they want to make sure it is safe for Sophia that I drop her off with non medically trained personnel. I get it, but holy moly, it has put a cramp in my style. I was unaware how much I needed that weekly sing it out fest with my congregation.

Getting used to the diet hasn't been terrible or even terribly hard, it's just been one more thing on the pile. for instance, it took me one whole day to get someone to tell me how the hell I could get pain medication into my daughter without screwing up everything we had just done at the hospital. Then there was the constipation that lasted for 4 days at a time, the enemas, taking care of the surgery site, the seizures, the decline of seizures, but not anywhere near the cessation of seizures (this stuff really does take time and its only been two weeks). Turns out her boil was MSRA and now I have to find SOMEONE who will give me this stupid nose swap so I'm not a carrier anymore because her pediatrician won't do it.

My birthday came and went with barely a breeze. Thanksgiving was pretty nice, until Sophie has a mega seizure at the end. She has gotten very sensitive after just waking up for seizures. We tried to go out for my birthday tonight on my husbands first night off in 7 days. And he works 14 hours per shift overnight, so it's not like he's been able to rest anyway. But alas, sleeping beauty (the baby) slept too late. I didn't want to wake my girl b/c I know she is prone to seizures if woken up, and then, at 2100, she ended up having a seizure anyway. Thanks epilepsy. Husband works another 4 nights before his next day off. Thanks Retail!

And I am just so so busy. I have so so much to do, and I don't have enough day to do it. Well, I would if I could get out of the house, but Sleepy McSleeperton sleeps ALL THE TIME. Which I think is actually a good thing, giving her brain a rest, but shucky darns batman, I have errands to run. And a whole lot of them. And we are refinancing the house. Why did we decided to do that NOW? And I think I'm struggling with a bit of depression, so that is sapping much of the motivational edge I need to really put the pedal to the metal and get it done.

The kicker is my good friend, who has basically kept me afloat is leaving. She came into my life a couple of months before this seizure shit storm started in May. Now, she is moving on with her life. She got a job in Austin, she will be deploying next year. She loves being in the Army, so she is doing what she can to enjoy that career as well as properly raise her almost 3 year old son. I am so proud of her. I wont take the time to enumerate on how essential she has been to my sanity and emotional survival in the last few months. Just trust me, it has been tantamount. She is closing on her house tomorrow and moving Friday. Today is Monday. I am crushed. We've tried to talk about it, and me, miss gabby talks and shares too much, I just can't go there. I choke up when I even think about it. My heart physically hurts to write this out. I have no idea what I'll do, but somehow we have managed to schedule time together everyday until Friday. I want to help her pack, but I don't know if she'll want me there, I'll be bawling the. entire. time. I know that is technically in December, but we'll just lump it in with November, because next month cannot go this bad. I cannot handle any more grief, struggles, hardships, losses, changes, upsets, or anything like that. Well, perhaps I can, but not without all the crying.

There have definitely been ways to spin some of this stuff positively, but I'm just not there. I hope to God I am at the end of this valley and that it is time to start climbing uphill again. So what has saved this month from the deep? My husband and his strength and support, tenderness, and snuggles. My son and his need to play and have fun and not tolerate my half-hearted efforts. When Sophie smiles. Alysha and her constant encouragement. She literally makes me courageous to get through the next day/week/month. God. When he actually and really takes away my fear, anger, sadness and gives me strength, patience, love, and peace (still working on Joy). I am so confused. I am weary. I am sad. I know that things can get much much worse, but this is pretty damn bad. There is a silver lining on every cloud and when it stops raining in my eyes, I will be looking for it.

In All Fairness

It's probably not fair to post something like I just did and not explain even a little.

My sweet sweet, beautiful, darling, precious daughter was diagnosed with a shitty, piece of shit, awful, son of a jackal disease in May. It's called Infantile Spasms, it is a seizure disorder, and it has just stolen so much from her I can't stand it! Sound a little bitter? A little angry? Well, I've been putting on a nice face, and if you can't bitch in your anonymous blog, well then, WHERE THE HELL CAN YOU?! Hm? That's what I thought. Sit down. This poor girl was having 3 seizures a day. They were really setting her back developmentally, still kind of are. They have slowed down a little to 1-2 a day, but sometimes zero. I hate having to look at my beautiful daughter and think about what is being stolen from her at this moment and what might be stolen from her in the future.

That right there, that idea is just the worst damn thing for me. It's so hard to deal with. And I know, I KNOW, dont borrow tomorrow's troubles. See the silver lining. I know..... I'm trying. Most of the time I do okay. It's just when I get around kids who are doing so much, or I see 6 month olds who are standing in their crib, who probably say "Mama", it just slays me. If these seizures would stop, she would catch up, but they aren't stopping. We have plans, and God, Oh God, please, please, please heal our girl.

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You know what is really hard to hear, "I don't know how you cope with all of this. I wouldn't be able to do it." Uh, Ive gained 20lbs and cry all the damn time. I'm really not coping. It's because of Jesus that I haven't lost my damn mind, but I'm not dealing with it very well. Maybe it get's better with practice. Anyway, Larry has started back up with the whispering and threatening. Better close this up.

You have a good day now, ya hear! God bless you! :-D

By the Balls

I feel like "Life", let's call him Larry, has a gun to my back. In my ear, he whispers, "Don't stop smiling. Don't stop having fun. Figure it out. Find the balance. Take care of everyone. Take care of yourself. Don't you dare stop fucking smiling." Then Larry, who is maintaining his own smile, punches me in the kidney. I bend over, moan in pain, hold my side, grimace, perhaps cry a bit. He gives me just a second before jabbing my shoulder blade with the barrel of his gun and repeating his mantra, "Don't you dare stop smiling. Or I will fucking end you in ways you can't imagine. Just keep moving."