Thursday, January 24, 2013

The Missing Piece

There is something missing from this blog. An omission that gives a false impression.

We have a lot of Collin on here and some friends and family, which is all good, but for some reason, there is not a shred of Heather. We're going to put an end to that today.

In late spring of 2010, we received a Michelle P Medicaid Waiver for Collin. This is a waiver program that provides much-needed funds to individuals with significant developmental disabilities in order to hire 'employees' to provide care and guidance with the purpose of making the individual's life more full and independent. We opted for a consumer-directed option and so Kyle, as Collin's representative, has authority to hire and train whomever he thinks would be the best fit for Collin.

We were both nervous about the idea of bringing someone into our home. Collin is so complicated and we are very private people. But I was also worn to a nub and many things in our family were being neglected, so we put together a job description that emphasized willingness to learn over medical expertise and a capacity for love over experience with disabilities.

Heather came into our family's life in August of 2010.  She had actually answered a childcare advertisement for a dear friend, who immediately called me and told me she had someone I should interview. At that time, Collin was small and round and didn't move much and couldn't hold up his head and didn't really have seizure control yet. Heather had some childcare experience and some limited experience with individuals with special needs, but lots of humility and questions and openness.

Fast forward two and a half years. Heather is, undoubtedly, the most important non-family person in Collin's life. If you can really call her non-family. She has been here for the worst of his retching, for his g-tube popping out, and for various doctor's appointments. She has seen him pick up his head for the first time, start using his vision, get seizure freedom, potty train himself, stand on his feet, take steps, and generally come into himself. She plans his weekly themes (we're talking about blocks right now) and comes up with corresponding art projects for the three days she's here during the week. She pushes Collin (with both lavish encouragement and no-nonsense discipline) and gives him space to do things on his own and knows when he's had enough. She asks lots of questions (and they're always the right ones) and often makes discoveries about Collin before anyone else.

When Heather is here, I don't think twice about leaving the house to take care of household duties, of Collin's many needs, or even of myself. She can handle any issue that arises and knows when to call me for help. She knows Collin fully and she loves him. And Collin obviously loves her. One of the great joys of my life is to listen to the two of them laughing in the other room, or to Heather cheering like crazy as Collin stands up or prop-sits or has a good swallow.

You might have to squint to see her in these pictures. Because she's one of those people. Those servant-hearts who give themselves fully without recognition. I guess I avoided bringing her up for so long out of respect for her privacy, but I've been feeling like that's not okay anymore because she is such an integral part of Collin's life and family. So, I'm outing her: Heather is one of the best things that has happened to our family since the coming of Collin. She does immeasurable good for him and, as a consequence, hugely impacts all of our lives. I want everyone to know her name, so that when I bring her up in conversation (which happens a lot), there is no confusion: I am talking about Collin's skilled therapist and loving caretaker and best bud.

Friday, January 4, 2013

2012: The Year of More Collin

I'm a little behind on all of the year-in-review stuff. Maybe from Collin's retch-tastic, ultra-oxygenated Christmas week and the necessary recover period for everyone.

Last year, we had Collin's Countdown of Awesomeness and when I sat down to think about how to wrap up this year, I admit that at first I felt a little sad. It wasn't chock full of milestones like last year. No first time standing up or taking steps, no sudden self-potty training. In fact, he stopped bearing weight on his legs for a period of time. We wrestled with the bipap and pulse ox issue. Most other skills stayed exactly the same.

But something about that view of the year didn't sit well with me. Collin had undoubtedly come a long way. I just couldn't put my finger on how. And then I remembered a totally unrelated conversation I had with Kyle recently (notice how many of my breakthroughs come from that guy?) in which he was pushing my buttons by arguing that if it's not measurable, it's not real. Neither of us believes that, but I couldn't keep myself from taking the bait and it all came back to me as I was thinking back over 2012.

Maybe I can't measure it in individual achievements, but it doesn't mean that the change isn't real.

The best I can describe it is this: Collin became more Collin. He sort of came into himself. He became more present. He showed himself to be an excellent listener and a tender heart. He developed obvious interests and a distinct sense of humor that is more than just laughing at flashing lights. He got grumpy more often -- and smiled at interesting and specific things and looked into people's faces and interacted with them in ways that might not have been obvious to anyone but Kyle and me. He refined his taste in music (classical piano, bluegrass, Yo Gabba Gabba) and film (Sesame Street, Winnie the Pooh, Yo Gabba Gabba). He had what I interpreted to be clingy spells (I'm pretty sure I was right) and I would bet you a thousand dollars that I witnessed him expressing physical affection. To me.

So maybe we haven't made identifiable progress in multiple skill areas this year. But I have more of my son than I've ever had before, so you won't hear me complaining. That's a good way to face another year.