walking on air

(The date should reflect Tuesday, May 11, 2010.)

Again, much thanks for all the bibs. We are very grateful. We know some of you are still working on some, and others are making more. We can't have too many; we will need bibs for a long time! I am still sending out patterns to some of you via snail mail.

Yesterday, Janneke was at Mac for her endocrin testing (hormone levels, etc.). I am not sure which was more challenging that morning - watching Janneke deal with some pain and waiting to see if she would seize (part of the test), or visiting with the mom from the next bed. She was there with her teenaged son whose needs were numerous.

The mom and I had a pretty frank discussion. We talked about the overwhelming feelings of raising kids with significant developmental/physical delay. I kept thinking about how Ralph and I would manage with our kids in their teens. People remind us to take it one day at a time, and we concur. But, the truth is, it is easier to take things one day at a time when there's some kind of pattern of development to lean on. When the pattern is removed, the one-day-at-a-time feeling isn't so easy. I feel like Wily Coyote walking on the air when he doesn't realize he's stepped off the cliff. Of course, he only fell when he looked down and realized the ground was gone.

The mom was frank but encouraging. Her advice: Don't make life complicated. My impression from our conversation: When your child is faced with many hurdles, you need to find the balance between pushing for intervention, more specialists and progress - and trying to enjoy a simple, love-filled life.

We continue to fight in choosing joy - like Romans 5: rejoice in suffering. This passage can be easily misunderstood, and I am not suggesting cheering for the pain. But, we don't want to waste our circumstance, nor do we wish to waste this life. Just as we bring God our anger and frustration, we also ask Him to help us keep our eyes up and forward, to see the joy. Finding the joy brings perseverance, perseverance builds character, and character builds the hope.

It's hard not to glimpse joy when your six year old tells you prairie dogs aren't following Jesus because the man dogs have more than one woman dog in their coterie (prairie dog family - something else she told us). It's hard not to smile when it is announced that caesar salad is now seizure salad "so Janneke doesn't feel bad, Mom." And we smile when our eight year old is thrilled with the map pinned to her ceiling that shows the whole world according to population (her purchase). The shapes of the countries are distorted to reflect their numbers, not their land size. There's nothing like laying on your back, gazing at the huge mass of China before you fall asleep.

It's also hard not to smile when you ask your kids to pose for a picture, and this is what you get:

Lately, Rachel and Janneke have been dealing with a gastrointestinal bug, so the days are long and the nights are short. They seem to be getting better, but we appreciate the prayers for their health all the time. I haven't been able to run with Rachel the last few days because of her health, but I am sure we'll be back at it this weekend.

Rachel has been changing again, flopping forward over her feet when she is sitting or in her chair. She's either intending to do this, or she is easily sapped of strength. Not sure. We are thrilled with her new ability to activate her motion ball (see last post). She uses her head and now also her feet to move it (like soccer!).

We are still waiting to hear Janneke's voice beyond the grunts and sighs, but in the meantime, she has started to use one arm to bang on toys. She is proud of her attempts and spits like crazy to let everyone know.

Rachel has her MRI on Monday, and we hope the results will help both Rachel and Janneke. There are a few more appointments in the next month, but we are cautious in our expectations of answers or revelations.

have a good week.... special hi to our newest family member out in Wisconsin, little Lachlan and his parents Mel (Ralph's niece) and Nick.