Things I Will Never Take For Granted Again

These seizures have changed the way I think about things. I can't believe in such a short period of time, just 5 months, how drastically our lives have changed because of them. It must be torture for a Toddler to not be able to get down and play and be so traumatized every time a seizure throws him to the ground, not knowing why. It must be brutal to have to wear that uncomfortable helmet all day long. I know how hot it must be and we haven't really had too many hot summer days yet. Did I mention, we have no air conditioning? The irony is, heat tends to bring on seizures...

As I sit here in bed with him tonight, I can't help but think of all of the things that have changed for him. I'm not feeling sorry for him or us, it's just heartbreaking that this is our new reality. These are some of the things the Doodle used to be able to do that he cannot do anymore. I will never take them for granted again if the seizures ever stop.

Running around the house independently like a big boy, exploring.
Jumping up and down on my lap, off my lap, on my lap, off my lap.
Climbing stairs.
Riding his bike.
Playing in the tub with toys.
Seeing his beautiful head of hair, now I barely recognize him without the helmet on.
Playing on a playground.
Playing basketball with his brother.
Attending a preschool.
Sitting at his little table and doing projects.
Greeting people at the front door.
Keeping himself busy for a few minutes so Mom can go potty.
Being able to sleep in his big boy bed.
Playing hide and go seek.
Chasing the ducks at the park.
Watching him go down the slide and giggle hysterically and climb back up the ladder to do it again.
Going for walks with him while he would push his favorite cart.

It's not to say he can't do any part of the above, just not on his own without a shadow hovering over him or two hands holding onto him tightly.

I'm in a real funk tonight after just giving the Doodle a bath, watching him have another seizure in the tub. The simplest thing like a bath has now turned into a big scary nightmare. I've got white knuckles on the tub and the hair on the back of my neck is standing up the whole time. The Doodle doesn't have a clue...he's splashing and having a blast with his soap paint and then boom! He goes down and not gently. He's always thrown down with such force and never puts his hands out to catch his fall. My blood pressure must be through the roof right now. I've never felt so helpless with such heartache and worry.

He's had more than 25 seizures today and he will probably have at least 5 more before the night is over. I cannot imagine the quality of his life, and ours, if these seizures continue at this rate. How can he function? How will he be able to live? His house is no longer a safe place for him. The only time he is safe is when he is in bed with someone or sitting on someone's lap.

1 comment:

  1. Oh my god Angela! This has gotten so out of control. I am so sad for you. I wish and pray for an answer for you guys. Poor little thing - and I know the worry the must be killing you. You are in my thoughts every day. I wish I was nearer so I could come see you.