Tuesday, March 31, 2009

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.

Sunday, March 22, 2009

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.

Saturday, March 21, 2009

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.