Tuesday, December 25, 2012

Merry Christmas

 We're low key here today. Collin is still having a pretty hard time with his virus. He has developed bronchiolitis and is on an antibiotic and lots of breathing treatments. He is mostly struggling with managing all of the congestion, which leads to lots of retching, which leads to not much breathing at times. We decided to postpone our Christmas celebration until this weekend, when he (and we) will hopefully be able to enjoy it more.

Merry Christmas and many thanks to all of you who are walking this road with us.

Sunday, December 23, 2012

Christmas Cough


This isn't Collin today. He didn't want a picture of himself on the interwebs this morning because of his glassy eyes and snotty, red (Rudolph-esque) nose. He has done a bang-up job of coming down with the cold Kyle and I had over the past couple of weeks and tried so painstakingly to protect him from. It's been a good excuse to stick close to home and have lots of relaxing Christmas family time, but his cough seems to be getting worse, so we broke out the nebulizer and have a call into the pediatrician. Here's hoping for a  quick turnaround.

Wednesday, December 19, 2012

Walking the Line

Collin and I colored a picture this morning. Today, that involved me holding a crayon in his hand, scribbling it for a few seconds, and trying to see if I could feel him participating in any part of the process - either the grasping or the coloring - so that I could back off incrementally and let him take over.

Well, let me back up. It's not that simple. Collin was standing in his stander so that he can get weight-bearing on his bones and in his hip sockets; this makes it more likely that he will develop physically in such a way that will allow him to move independently one day. He wore special braces to give him ankle support and provide sensory input to his feet so that his brain can feel that they're there. He was looking particularly almost-4-years-old-ish in his camo pants, purple Buddy the Bat baseball t-shirt, and yellow long-sleeved cheeseburger shirt; under all of this, he had on truck undies because he hasn't had an accident in weeks and his diapers have been falling to pieces by the end of the day from never getting changed. He also had on a terrycloth bib because being upright and looking down at what he's doing makes it really hard for him to swallow his drool since he doesn't have great control over the front of his mouth. Because he can't use his mouth, he also had an extension and syringe hooked to his g-tube, giving him his morning water bolus. I had already done warm, wet compresses and deep pressure on his hands to make his brain more aware of them and let him play in dry beans to get some finger movement going. Even with all of that, he just wouldn't or couldn't grasp this morning. With the exception of a couple of random streaks, he didn't do any of the coloring himself. His vision was on fire, though. He stared at the thick black outline of Santa Claus and every time I held up a new color of crayon for him to see, he found it with his eyes in no time. At the end, when I presented the finished product for him to admire, he pressed his hands against it (the hands he hadn't been using this whole time), took in the entire picture, smiled, and drooled on it and me and himself.

It was so frustrating. And we had a great time.

It reminded me of a conversation Kyle and I had last week. We were sharing some dreams we have for Collin, as well as things we struggle with in parenting him day to day. I said that on the one hand, I feel like I have to fight ferociously and without stopping to give Collin every opportunity to develop in new ways - to push him to become as independent as possible; on the other hand, I feel like I have to accept Collin exactly how he is - to be content even if he never learns another skill the rest of his life. When Kyle asked (somewhat rhetorically) which it has to be, I immediately answered, "I think it has to be both. Both, all of the time."

It's a line we walk. But we don't walk it like a tightrope, trying to keep from falling to either side. We walk it like a kid on the edge of a sidewalk, head down, concentrating, making sure one foot stays high and one low, because if we're not in both places at the same time, the experience is not as good. In this way, we use the line as a guide rather than a boundary. It keeps us on both sides of the paradox -  celebrating the good without idolizing it, accepting challenges without giving in to them, longing for more and loving what we have.

Thursday, December 13, 2012

Maddie


We said goodbye to our friend Maddie last week.

For a variety of reasons, her brain was no longer telling her body to breathe and her parents, advised by her care team, made the impossible decision to let her go. They made her comfortable and surrounded her with love till the end.

Maddie was deaf and blind. She had low tone and fought seizures. But what characterized her more accurately was that she had a beautiful, fiery spirit - just like her mom, Debbie, who was one of the first people to reach out to me when we started finding out about Collin's challenges. I remember Debbie telling me a story about how a thoughtless comment had made her want to punch someone in the face. Somehow, I got so much hope from her sharing that raw emotion; likewise, watching her family live a full, happy life helped me to see that our future could be just as bright.

We are so sad that Maddie is gone, happy that her suffering is over, aching for her family, and incredibly thankful for her very real impact on our lives. It's an awesome and complicated mix, just like her.

Monday, December 3, 2012

A Smile for Your Monday

Today was Collin's last PT appointment before our big holiday and his beloved therapist sent home a gait trainer for us us to experiment with over the break. When it was time to go, she spontaneously asked if I wanted Collin to walk the walker to the van.

By this point, he had been in walkers and gait trainers for an hour, so his legs were pretty much dead, but he was still completely holding himself upright from the torso up, almost as if it felt natural to him. It was the warmest December day I remember and the breeze was blowing and the sun wasn't overly bright so his eyes weren't freaked out. He genuinely enjoyed himself and seemed totally aware of what he was doing.

It reminded me in a way of the day Collin rode in the grocery cart for the first time, in that he didn't do it at all like other kids, but the end result was such a beautiful, warped version of normal that it took my breath away.

Walking to the Van from Annie Kratzsch on Vimeo.