Decisions

I haven't had much of a chance to write here. Things have just been so hectic right now. My daughter and her 2 kids moved to Oregon in April and have been staying with us. Ally is 20 months old and Gavin is 5 years old. He also has Aspergers so it's been quite the challenge meshing everyone together.

All and all, it's gone surprisingly well. Taylor was a little put out at first because she could no longer have complete and total reign over her kingdom (her room) but she has adjusted well. She absolutely loves helping to take care of Ally. It is a little hard for Taylor when we go to the park. She still has the mind of a toddler and wants so badly to play on the playground equipment, but she is just too big. They don't think of developmentally delayed "children" when they put these brand new play structures in. Sometimes it's really hard to sit and watch her want to play so badly and she just isn't able to.

I am in the process of deciding whether or not to put Taylor on the new seizure medicine that was just approved for Lennox-Gastaut seizure disorder. Looking over the side effects of the drug makes me very uneasy but then I am not sure how long we can just let her have so many seizures every day. There is nothing to say that this drug will or won't work but it's just a really hard decision. She can't tell me how the drugs make her feel and I don't want to mess her up any more than is absolutely necessary. She is already on 3 other seizure medicines. I would hate to think of how many seizures she would have without those drugs. There is a 50/50 chance that the medicines aren't really helping at all or it's the reverse and we have no idea how many seizures they stop.

I hate these kinds of choices. There is nothing that seems totally right.

What If…

I'm not sure where to begin with this entry. I got Taylor's school progress report in the mail this week. One of the sections described how Taylor could pick out 3 numbers, up to the number 9, with 60% accuracy. I read that and had a mixed reaction that involved some tears. On the one hand, I was excited that Taylor could pick out a few numbers a little over half the time. On the other hand, Taylor is 19 years old and should be finishing up her first year in college.

After 19 years of living with a profoundly developmentally delayed "child", you would think I was done grieving for what might have been. In a sense, I am. However, I think there are always going to be those times when it just comes back to haunt you.

Honestly, I can't really imagine Taylor any other way than the way she is…a 6 foot tall toddler with a loving personality. I will admit to the occasional day dream where Taylor is a typical teenage girl. I wonder if she would be really girly or more of a tomboy. Would she still love car magazines like Mustang 5.0? Would "3 Doors Down" and "Nickelback" still be her favorite bands? What TV show would take the place of her current favorite, "Blue's Clues"?

I rejoice at every new accomplishment she makes, no matter how small. I am proud that my child is the popular one in her class because of her personality. I love the fact that she knows more people in our small town than I do. I can even handle the fact that more people know me as "Taylor's mom" instead of Dawn.

There are just those short periods when I need to grieve again for what might have been. I guess that will never go away. My doctor once told me that it is healthy to give into those moments of grief…as long as I don't let it take over. I think the fact that I get excited because Taylor learned to say "ta da!" shows that I don't dwell on the "might have beens".

A Little About Taylor

We have finally weaned Taylor off of the one seizure medicine. I haven't noticed an increase in her seizure activity but then, she has so many seizures a day, I think it would be hard to tell. Now it's just getting someone to prescribe the new drug. Taylor sees 2 neurologists and they each think the other one should follow Taylor and prescribe the new medicine. It sounds like a comedy of errors right now.

Taylor is having some pretty rough seizure days right now. The seizures come like contractions…anywhere from 10 to 30 minutes apart. There are hundreds of them a day. She will just start shaking or staring off into space. Her absence seizures usually involve her eyes looking off to one side and her rolling her hands up in her shirt. She actually has a seizure we call "the Elvis". She shakes on one side of her body and one side of her mouth sort of goes up in a sneer…sort of like Elvis Presley. There are just some things that are better dealt with using humor.

Taylor loves her mp3 player. Right now, she is fixated on listening to it all the time…especially when she is throwing her tub toys over the shower curtain and into the tub. There is just something about the sound of the plastic hitting the tub that makes her laugh. Taylor also loves her photo albums. We have family pictures in there and she will look at them so much that we have to buy new albums for the pictures about every 6 months.

She still loves Spongebob Squarepants, but she has found the Nickelodeon show "Drake & Josh" now. We will hear her in her room laughing hysterically. I think it's because she has always found slapstick kinds of things funny. Taylor also loves car magazines. Mustang 5.0 is her favorite but she will look at the free AutoTraders till they fall apart. I have no idea what it is about car magazines that she finds so fascinating. I just know that when we go to Wal-Mart, she is drawn to the magazine section.

Taylor is definitely an interesting character.

I Know…

I wrote this just after the death of John Travolta's son. He was 16 and died from a seizure. That is something that we have to deal with as well…knowing that at anytime, a seizure could take Taylor away from us. I decided to repost it here…where it will finally have a home.

I've seen the news reports on the death of John Travolta's son. It breaks my heart. I know, first hand, the fear that grips your life everyday when you have a child that suffers from grand mal seizures. I know what it feels like to see your child fall in a heap, hitting various body parts on furniture and the floor as they thrash around. I know what it's like to take your child to the ER in your car and in the back of an ambulance because of injuries suffered during a seizure or because the seizures won't stop.

I know what it feels like to give your child one medication after another in the hopes that this is the one that will work. I know what it's like to plan your activities around "is this a 10 seizure day or a 100 seizure day?" I know what it's like to have people stare as your child hangs on you while she has a seizure in Wal-Mart. I know what it's like to watch medicine after medicine, surgery after surgery, even brain surgery, fail to stop the misfiring of your child's brain. I know what it's like to have a doctor look you in the face and say, "I'm sorry, this will most likely be how your child dies". I know what it feels like to go into your child's room praying this isn't the day you will find her gone instead of just sleeping longer than usual.

I also know how cruel and callous people can be online. I have seen people think it's okay to call people bad parents and be mean and nasty simply because they think anything goes as long as it's online. I know the hurt words can cause. Maybe before people start spewing their hatred and misery towards someone else, they should take a good look at themselves and wonder what exactly they are doing to make this a better planet. Maybe, those small-minded people who have nothing better to do than to criticize how other people parent, should ask themselves, "what would I want to hear in my time of sorrow and need" instead of "what can I say to be nasty".

Because I refuse to end this in a bad way and because my child deserves better: I also know the kindness of strangers and their offers of help even when there is nothing they can do. I have felt the hugs of nurses and doctors when their medicines can't help and all they can give me is their compassion. Most importantly, I KNOW the love of my precious Taylor and the utter joy that she takes in every moment of her life.

Hope Springs Eternal

So, the beginning of this month, Taylor and I made a trip up to OHSU in Portland for Taylor’s video EEG monitoring. That is always so much fun…not. We did get to come home after 2 nights there.

The fact that we never have to spend the usual 5-7 days because Taylor seizes so much just doesn’t seem like a silver lining. I think I would much rather spend a whole week at the hospital with her just to capture 1 seizure instead of 2 days because she has had hundreds of seizures.

Having gone through the escalation of seizure activity once before, I really don’t look forward to what things are looking like. Taylor has had seizures since she was 8 months old. Luckily they were controllable until she was 10 years old.

Once she hit 10, we started on a downward spiral culminating in brain surgery, a corpus callosotomy, in 2003. The surgery was absolutely the right thing to do at that time. Taylor was spending more and more time in status epilepticus and it was threatening her life.

The surgery resulted in a stroke, but I have never regretted making that decision even though it’s hard. That is probably an entry in itself…making those life-threatening decisions that we as parents of medically fragile children have to make.

So, now we are back on our seizure escalation treadmill. Today has been a rough day because she has a lot of drop & complex partial seizures. As it stands now, further surgery just isn’t an option. Focal point surgery would be our only option, but then there is no definable focal point for Taylor’s seizures.

The bright spot is that the FDA just approved a new seizure drug specifically for the treatment of Lennox-Gastaut seizure disorder. We are in the process of weaning her off 1 of the 4 seizure medications that she is on so that we can start the new one. If it works, we may try and get her off at least one other one.

My First Post

I decided to start a journal talking about my experiences being the mother of a special needs child. My daughter is 19 years old now. When she was 8 months old, I was told that my daughter wouldn’t life to her 1st birthday. I planned her funeral. Needless to say, she proved the doctors wrong.

Life is a little difficult right now. My daughter is suffering from intractable seizures. She has a vagal nerve stimulator and she has had brain surgery yet she still has many, many seizures a day.

The one good thing is that she smiles through it all. She is happy and easy-going. I’m very fortunate that she does not have behavior problems. I don’t want to spend this whole post listing her medical problems. I want this to be a blog that uplifts as well as a place to vent.

Maybe it will touch someone else.