after thoughts

Janneke has been so content to be home.

Rachel's found this new way to use her lips - like a motor.
She's pretty proud of her new sound.

It’s good to be home. There’s always a lot to catch up on around the house, and the pile of school papers from Em and Soph is too big, but it is good to be home.

Rachel did not sleep well while Janneke was in the hospital; she has been so happy to have Janneke back. I love it that we can see this change in her emotions!

Looking around the peds ward at Mac last week, I realized there are many chronic case families. Families like ours where the children come into the hospital with pre-existing conditions. Families that visit the hospital regularly for maintenance of medications, more tests to improve daily care, and a chance to add more specialists to the circle of care for their child. Families that adjust their “normal” regularly.

When Janneke had her first grand mal seizure on Easter Sunday, it was frightening for us. We knew the possibility existed for both our girls, but when it actually happened, we were in shock.

Time has passed; yesterday, Janneke had a very short seizure, and I realized, again, that we have to adjust our normal. For some of you reading the blog, you are all too familiar with seizures.

Each week, I wrestle with accepting our normal. Many of you do in your own lives as well. Can I assume - When we were kids, we hoped our life would follow a pattern we desired.

But, real life doesn’t follow a pattern. At least, that’s what I am learning. When I was twelve, I thought the tough times and unexplained changes happened to other people - I only had to deal with hairspray changing from an aerosol can to a pump.

Real life doesn’t follow a pattern. That’s it. That’s what I wrestle with. I am an a-type personality who would organize the toilet paper rolls in the bathroom if I had time. I want to have things measured and controlled.

It’s like the song from Robin Mark:

Jesus, all for Jesus,

All I am and have and ever hope to be.

All of my ambitions, hopes and plans
I surrender these into Your hands.

For it's only in Your will that I am free,
For it's only in Your will that I am free,

Jesus, all for Jesus,
All I am and have and ever hope to be.

It is difficult to sing that song and truly mean each word. That's the journey.

So......onward with daily living. Choosing joy for each day doesn’t mean I’ll be fake in my optimism, but it does mean I will try to count the blessings before I count the yuck.

There are a number of tests that we decided to do as an out patient for both Rachel and Janneke. Those appointments will come in the next number of weeks. In the meantime, we will enjoy the sunshine and warmer weather. I’ve gotta put away the mittens and winter coats. Crazy.

Thanks again for your support. We appreciate your prayers, and we enjoy the visits.