Sunday, October 28, 2012

Initiation

Let's start this off by stating the obvious: there are a lot of hard things about being a parent of a kid with myriad special needs. I don't spend as much time thinking about that as I used to, but every once in a while a particular struggle will bubble to the top of my mind and kind of bob there. I've been mulling this one over for a while now, trying to figure out how to put it in words.

As the parent who is home with Collin all day, I sometimes face a unique set of issues. Many are logistical: How am I supposed to go to the grocery with Collin when I don't have childcare? How can I minimize my lifting of Collin while still keeping him engaged and active? But others are very much mind/heart issues. Am I giving Collin enough free time, or does he need more structured therapy time? Does Collin really know/care that I'm here?

The particular issue I've been thinking through is a strange combination of both. It's something that challenges me deeply and impacts most of the minutes of my day. It is simply the fact that every interaction, every activity, every everything in our entire day is initiated by me.

I read an article once by a mom thinking through why it is so hard to be the mother of one newborn. She explained how draining it was to be home all day, alone but not alone. To have no one to talk to, for each day to be centered around the anticipation of the unspoken needs of another person. It's draining in a way that is different from most other life phases and it is a fairly good picture of what I'm trying to get at here. Except that I have no idea when or whether this phase will ever end for me.

I'm an introvert; I get energized by alone time. But the vast quiet I am filling every day is not the same as alone time. It's an ongoing invitation (that sometimes feels more like expectation) to be the extrovert, to be the energy in my environment. I prefer to listen and respond. But if any words are going to be spoken in a day here, they have to be by me. And they have to be spoken with the knowledge that I will get no answer of any kind.

When I hear other moms of young children talk about the onslaught of questions, the harnessing of 3 (or 4, or 2) year-old energy, I listen not with bitterness or even much sadness (I am thankful to say), but with a kind of bewilderment - like learning about a different culture for the first time. And just like I might imagine what it would be like to live in a Mediterranean fishing village, I wonder what it would feel like to 'have to' chase a toddler or answer a barrage of requests or feel the need to read one of the dozens of pinterest pins on how to distract a preschooler.

When I ask Collin what he wants to do next, what he wants to watch, which toy he'd like to try, it's really a question that I will be answering for him in a few seconds. That answer will come from a guess formed in my own mind based on what I perceive to be Collin's reactions to dozens of other instances in which I also picked what we would do next.

And I'm not always great at it. There are times every day when I realize that I've pooped out on talking and slipped back into doing without saying. I wonder what this must feel like for Collin, who has great hearing but not great vision to help him understand what is going on during those quiet times. So I summon my energy and drag my brain back into the vocal world, trying to engage Collin in the string of daily activities that he is unable to choose whether or not to participate in.

Even when our fabulous helper, Heather, is here working with Collin and interacting with him with her trademark tender enthusiasm, my brain just bumps up to a different, bigger-picture level of constant initiation. Heather and Collin spend their time on a schedule I devised (and continue to revise) to establish some kind of rhythm and structure in Collin's days. I think through his diet based not on what he likes or will want to eat (oh, to have a picky eater!), but on what I think he needs to keep him nutritionally balanced and in proper ketosis. I look for apps that might engage his newly developing fine motor skills, books that might stimulate him visually, crafts that might interest him sensorily.

All of this adds up to an exhausting pressure. If I need to take care of something else, that means Collin is stuck wherever he happens to be. If I choose to sit down and read for a few minutes, that means Collin is either lying by himself on the floor or sitting by himself with a video. Wherever I am and whatever I am doing, I am always wondering what Collin is thinking and whether he needs or wants something different. Should he spend some extra time in the stander today since he's had so many doctors appointments this week? Is he enjoying this app or is he ready for another one? Would he be more comfortable laying on his tummy? And if I decide that he does require a change, it's up to me to make it happen. Because he can't tell me or ask me or do it himself.

Now. Here's the part where I reiterate how beautifully Collin enriches my life and how many kinds of joy he brings me. He is remarkable. I love being his mom. But that doesn't mean it isn't hard. Just like the hardness doesn't make it less awesome.

Tuesday, October 23, 2012

Collin Has A New Cousin!

She's almost a month old, so the news is a bit on the old side, but we spent most of the first weeks unable to see each other because of germs, so he's really only hung out with her a few times. Her name is Kate, and Collin kind of likes her:


And of course there's always the old cousin, his best bud Ila:


He's a lucky kid in the family department. Although, after hanging out with his lovely second cousin Claire this weekend, he did mention someone throwing a boy in here at some point. 

Friday, October 19, 2012

Some Surprises

It's been a busy few weeks around here with what feels like more therapies and doctors than normal. True to form, we had some surprises at even the most routine appointments.

1. Due to Collin's elevated heart rate (which we only found out about because of that dang pulse ox - I have a major love/hate relationship with that thing) and his poor circulation, we decided recently to go see his cardiologist. We had been discharged 2 years ago when Collin's PDA and PFO issues resolved, so I was expecting the doctor to listen to Collin's heart, tell us whether or not it was okay, and proceed from there. Instead, Collin had an EKG and an echocardiogram, which revealed thickening of his aortal valve and dilation of his aorta. The doctor assured us that it is nothing to worry about now, but he does want Collin to get 'back in the rotation' so he can see whether it is a static or progressive issue. It is not affecting the function of his heart in anyway and, in fact, the Holter monitor Collin wore for the next 24 hours showed completely normal and healthy heart activity. So, the thing we went in for was a non-issue and the thing that was discovered is, at this point anyway, a surprising but minor issue.

2. Our trip to the dentist for Collin's 6-month teeth cleaning was strangely similar in outcome. Because Collin doesn't eat by mouth and we brush his teeth twice a day, I expected another in-and-out appointment. Instead, the dentist almost immediately found a loose tooth. My first thought was, 'Oh no, his grinding is making his teeth fall out.' But the teeth that bear most of the brunt of his grinding were rock solid. On a hunch after finding two more wiggly teeth, the dentist took a couple of quick x-rays and found that Collin's adult teeth are coming in. I'm sorry, what? Yes. Collin is starting to lose his baby teeth at 3 1/2. The earliest the dentist had ever seen was 4 years old, but these teeth are barely moving, so he may be close to 4 by the time they actually come out. Brace yourself, people. The only thing cuter than a Collin has got to be a Collin with missing teeth.

3. We added a new physical therapist to Collin's weekly schedule to complement his work in the pool and on the horse. The therapist is truly fantastic and in our first real session, she wanted to put him in a harness that would help him to walk on a treadmill. I admired her pluck, but had no expectations other than for him to curl up in a ball of freaked-out-edness. It was amazing to be so wrong. Almost immediately, he started feeling for the treadmill with his feet. When it turned on and the therapist started moving his feet, I felt like I was literally watching the pieces fall into place in his brain. The longer he walked, the better he looked. His torso got straighter and straighter with minimal effort; his head naturally came to midline and looked both left and right, depending on what he found interesting; his arms were completely relaxed and held on to the grip bar or swung at his sides. I can barely keep it together just writing it. It was like the movement made his body say, "Now THIS makes sense!" When the therapist let go of his feet to give him a break and let him explore, he started out swinging himself above the treadmill, then letting his feet drag so he could feel the resistance, and by the end of the session (which was HALF AN HOUR ON THE FIRST TRY) he was obviously trying to take little steps on his own. And do I have pictures or video of this miracle? NO I DO NOT. Because my CAMERA BROKE and I didn't have a NEW ONE YET. Which is INFURIATING. You will be happy to know that I have remedied this situation finally, though, and will be sending amazing footage your way promptly.

As a good-faith gesture, here is a video (sorry it's so huge - I couldn't figure out how to make it smaller) of Collin coloring in the occupational therapy session he has right before hippotherapy. He is kind of into coloring right now. Just a tad.

Coloring from Annie Kratzsch on Vimeo.

Monday, October 8, 2012

Doozy

Well, folks. Collin prefers to get his sickness over with in the September-October range and this year he was right on time. Let's hope this is really it for several months at least, because it was a doozy.

I'll spare you the blow-by-blow, but it was a two-week ordeal involving recurring high fevers, tons of coughing and retching and choking, constant oxygen saturation monitoring and some oxygen treatment, multiple breathing treatments, an antibiotic, and lots and lots of worry on my part. He had just had a small cold back in August that didn't really faze either one of us, but this virus and its accompanying complications sent us into survival mode. Looking back, I think this is why:

1. Kyle and I both got it. So we all had it at the same time. We didn't get it as bad as Collin (until we thought everything was over and mine immediately turned into a raging secondary infection in my sinuses and ears and swelled my tonsils together), but we got it bad enough to make the sleep deprivation seem like a bigger deal. And to me, things just feel more dire when I'm sick.

2. Collin wasn't himself. This is actually a two-part reason. First, Collin has no way of telling us what is going on, so it's totally up to us to pay close enough attention and read his signs accurately. That's a lot of pressure and inevitably involves some trial and error, which doesn't feel good when you get it wrong. So, secondly, when he starts to act unlike himself or give unfamiliar cues, we have to try to determine whether it is just 'normal' effects of the illness, or more serious side effects that Collin is prone to because of his medical and neurological history. All of this adds up to lots of staring and thinking.

3. The longer/more sever the sickness, the greater the threat of seizures. No need to expound on this one.

4. Sickness means isolation for us. It's much, much harder to even leave the house when Collin is sick. So, unless we invite people over to our germ-infested house, we don't see anyone for a long time. At first, this is actually fine because it takes so much energy and focus to keep on top of things during at the beginning of a sickness, but after 10 or more days, it gets to be hard.

The good news is that we're all on the mend and back on track. I'm working on the camera situation, so I hope to have some pictures or video soon. In the meanwhile, I'll be updating soon on some recent doctors appointments and therapy developments.