Sunday, April 1, 2012

Changing the Things We Can

Lord grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

It might be the AA prayer, but it has been floating through my mind constantly for the past few weeks. This week in particular.

For about a month now, the baby has been having daily episodes. At first we thought it was just some weird thing she was doing. It would happen once a day, and I was concerned so I called her pediatrician. She only has a pediatrician and not just a family doctor because she had a full blown seizure in January. It wasn't febrile, the most common reason for seizure in children, so I have been slightly paranoid ever since that something else might happen to her.

You know that feeling deep down in your gut when something happens and you just *know* it's not good? You can't put your finger on it, or define it in words, but it just makes you feel queasy and unsettled? That's how I felt the first time I saw her have a spell. She was crawling along happily, then she fell onto her right arm, couldn't get up, and seemed stuck and out of it. It just freaked me right out. But I kept telling myself to stay calm, and she would sort herself out. Babies do weird things all the time! She'll be fine! And then it happened again the next day. And the day after that. So off to the pediatric outpatient clinic at the hospital we went, where a doctor thought it might be breath holding spells. I was told to try and get it on tape if it happened again. i took a few movies, none of which I can watch without cringing. I dropped off the video to her doctor, and was really hoping he would tell me not to worry.

But then she started having more and more spells a day. From one, to three, and then for a couple of days five. I tried to get her in to the Ped, but he wouldn't see us until April 10th. So I went to the family doctor, and he basically confirmed what I had begun to suspect. Petit mal seizures. I took her to the ER the next day. It seemed too urgent to wait any longer. She needed to see a doctor, and it needed to be soon.

They did and EEG, and told us she seems to be having partial focal seizures affecting the right side of her body. She needs at least a CT scan (possibly more tests depending if that is clean) and to be started on anti-seizure medication. The meds are given three times a day.

Three times a day I have to give my baby medicine to stop her from having seizures.

I can't even type that without feeling panic rise up and clutch my throat. I have had nausea so persistent it is first trimester worthy. (Don't worry - not pregnant. The nausea is so bad I have checked several times). My appetite is zero. I am only eating because I am still nursing, and want to make sure she is getting the best possible nutrition.

My head is so full of worry, paranoia (is this another one? is she okay? she isn't crying - is she breathing?) and flat out panic that is it a wonder I can function at all.

The only thing I can control? My health. I need to be strong and I need to have a clear mind so I can take the best possible care of my family. Daily exercise and healthy eating are having such a huge positive effect on my whole mind, body and spirit I can't even tell you. Getting the break from worry to complain about how much my butt hurts? Awesome. Running until I feel like my legs will fall off? Bring it on. I am so glad I have this challenge to give me something else to focus on, even for 30 minutes at a time.

Will I be meeting my goals? You betcha. Will I stop exercising and go back to being a professional couch warmer? Never. It's too important to everyone in my family, especially me, that I am healthy and able to cope. There is no time to fall apart.

There isn't a whole lot I can do. But I can do this. And do it well.

And that is a gift.


  1. It is every parent's worst nightmare to suspect there is something wrong with their child. When you know there is something wrong, have a diagnosis, have a plan, it becomes a part of your day to day existence. But the waiting, the fear, the wondering........ I can't even imagine what it must be like for you. Bring on edge all day, every day can't be anything but awful. Your post made me cry.

    I am so sorry you have to go though this. And am so happy that you have found an outlet. Go Challenge!

    You are doing an awesome job, btw. From the outside looking in, you appear to have all your ducks in a row and everything under control. You are the rock of your family and are such an inspiration.

    I am here if you need anything! Love you!

  2. You are such a strong person. Times like this, most people would whine and just feel sorry for themselves, justifying comfort food and not exercising because of mental exhaustion. You are obviously very committed to your family, and you have such a healthy, logical, intelligent approach to dealing with this issue.

    I'm sorry this is a hard time in your life. I hope things can go as smoothly as possible for you.

    You are an inspiration to anyone who thinks, "Life is too hard, I'm going to quit this."