Saturday, June 22, 2013


It came as no surprise to me that Bo's last day of kindergarten would be special. An award-winning journalist sat in the front row, recording hours of audio footage. She walked home with us and spent another hour talking to both Bo and me (see/hear the link above).

What surprised me, strangely, was realizing how many of my friends, family and colleagues tuned into the naturally running public radio programming. And the commensurate outpouring of acknowledgement was a tremendous boost. I'm pretty sure my heart grew three sizes too big.

As we prepare to join the big, annual family reunion for a family that no one hopes to join, I'm excited for Bo. I'm deliriously happy that he is old enough to see and meet and make friends with other people with the same medical technology and the same (or higher functioning, in the case of adults and older teens) level of understanding. Not that his condition or his brilliance will ever be normalized, but that he feels this community wrapping its arms around him, and us, in a way that our dear and loving typical community cannot.

I get misty looking at Bo, not just because he is an incredible guy in his most absolute essence, but because his BEING is a result of the love from all these communities, intimate and professional, typical and affected, local and international. He is running and singing, inventing and drawing, reading and sleeping peacefully because the many gestures of many hands seen and unseen are working around the clock for him.

I'm with the band.

Wednesday, June 12, 2013

The Natural Order

Things in Bo's world are right. They follow a natural order. You turn 6, get lots of LEGOs, finish kindergarten and have your baby sister idolize you.

For us, all that is expected from a 6 year old are all things that we consider novel (for a first child) and miraculous (for a child saddled with Microvillous Inclusion disease). But we've had a proper Spring (as opposed to Texas-style scorchers), a hospital-free school year and a successfully scaled-back birthday party.

Lucky for Ahn, she is so intent on doing everything that Bo does that even though we only read to her a fraction of the time we read to Bo at that age, she loves and craves reading, too. Everything he likes and does, she likes and does: reading, building LEGOs, trucks, and science. She is so convinced of his pure awesomeness that when we had to do a dressing change after their bath last night, she insisted she get a dressing, too.

Since we had an extra from the kit (which has adhesive that Bo is allergic to), I pretended to clean a spot on her chest and applied the Tegaderm. At first, I tried to distract her, then remove her from the room, but she was so insistant that she too get a dressing change. It was the only way to keep her from disturbing the sterile field around Bo. When both kids were done, and freshly dressed, Ahnnie's only complaint was that she wanted me to "paint" her belly, too. We only have so many betadine swabs, that due to the iodine, stain the skin yellow. It was hard convincing her that skipping that step was ok. It was even harder convincing her that we were not, in fact, going to "hook-up" fluids to her invisible central line. There was the briefest moment of grief; I silently sent up a prayer to all our friends who lost siblings to chronic illnesses, and prayed that our children would never know that day.

Tomorrow, Bo will go to his surgeon's office to have his line repaired. Please pray that it is as smooth and uneventful a procedure as we know it can be (it's literally a cut-paste job). And send a small prayer that neither child freaks out, and that both cooperate with JVC (he will have our home health nurse to help with Bo, but that means there will be that many more people crowded into the exam room).