Tuesday, May 18, 2010

safe in the nest

Well... I have a wicked bad cold, it is raining constantly, Ellie is having a naughty streak (she blames it on her appendix) and the arthritis in my hands is making this painful to type - but none of these things are a real problem, they are annoying but they just aren't the thing behind the thing.

The Big Thing is breathing down my neck.

On Thursday we will drag the family off to Pittsburgh in the wee hours of the morning, this in itself is bad. We are not morning people. The kids and I don;t like to eat much in the morning so we will be car sick and we will all be very crabby. Finally, after getting lost in downtown Pittsburgh, we will arrive at Children's hospital to meet with Noah's pediatric neurologist.

Noah has had a seizure disorder (epilepsy) since he was 2. His seizures are controlled with his Keppra medication. He used to be on Phenobarbital, but it made him a different kid, which we didn't know until we took him off. Imagine thinking your kid had serious ADHD only to find out it is the medicine you have had him on for two years. Anyway, some kids out grow seizure disorders, but the only way to find out if your child has out grown his or her disorder is to take them off their medication. Which we did two years ago. It took almost three months before he started having seizures again, but when he started he had them almost daily for a couple of weeks until the medication was regulated. He falls, he is completely unresponsive, he is shaking with every muscle, he hits his head on the floor, he lands face down in the shower - I hold him and sing "This little light of mine" until it stops, then he sleeps.

On Thursday the doctor will tell us it is time to take him off the medicine again. He is six. He loves to swim, ride his bike, build legos and play outside. This summer will be different. We will always need to be with him. Whenever we can't see or hear him, we will ask, "Noah, are you o.k.?" and if he pauses we will run. We will hold our breath. He will be annoyed at the hovering and we will be exhausted.

I guess my prayer is simply to keep him safe. If he weren't sick I might be tempted to believe my good parenting, three square meals, seat belts and hand washing were in control, but I know better. I'm wishing I could keep my baby birds safely in a box.... but I'm not so sure I would want to be in there with them, things would get ugly in a box with no tv, computer or toys very quickly and I'm not sure they would eat the worms I would bring them.


Susan Patton said...

Oh Jill, this made me cry. Keep being the good mama bird that you are...I will pray that you and your little one get through this.

~liz said...

i texted you this morning right after i read this. let me know if i can do anything else as we keep you and your little (big!) guy in our prayers.

Jill said...

thanks guys!