Thursday, November 25, 2010

Happy Thanksgiving

From our turkeys to yours.

Monday, November 22, 2010

Introducing: MOOM

Everyone except the cross country team dreaded high school fitness test, mostly because of the mile run. That's because a mile is a far way to go, especially when you're not used to running.

A milestone is just a marker along a road that shows you that you've gone another mile since the last marker; it shows you your progress, and how far you still have to go. In developmental terms, a milestone is a marker as well, showing that a child is attaining important functional skills: sitting up, rolling over, grasping and releasing, tracking, babbling. It's not just about hitting these milestones, though - there is a timeline attached. The idea is for your child to attain a particular milestone at the same time most other children reach it - or, preferably, before. That's because there is an understanding that we can get a picture of our child's brain as they reach milestones. If he sits up 'on time', we feel assured that everything is okay. If she rolls early, we're sure she is advanced. If he doesn't have enough words at the right age, we might feel a little anxious and defensive and try to convince ourselves that it will work itself out. Some of this is silly and externally influenced. Some of it is deep and internal, though.

With all of the focus on hitting milestones on time (or, in our case, ever hitting them at all), it can be easy to forget how miraculous they are. It means that another whole mile is behind us and so every mile ahead will be different now.

But, like I said, when you're not used to running, a mile is a far way to go. And Collin Francis is not a runner at this point. He is the proverbial Tortoise and ultra slow is his pace of choice. There are good and bad sides to this. The bad side is that a mile feels more like a thousand miles at an ultra slow pace. It feels like you will never get there and even though you're going the same distance regardless, it somehow feels more exhausting. The good side is that any pace at all means progress. Also, you see a lot of things at ultra slow pace that you might whiz past otherwise. Being able to savor these mini-milestones is what you might call an unexpected blessing. You kind of forget how close you are to the wrong end of the spectrum of development. Things get a little less linear and a little more organic and you feel almost exempt from other people's timelines.

So, we're starting a new feature here at Collin the Champ, called MOOM - Making Our Own Milestones. We're going to take time to hold up the mini milestones and celebrate them the way they deserve to be celebrated. We've probably actually been observing this tradition for a while but I like to make things official; it means cheesy names and numbered lists.

This week's MOOM:
1. Collin sat in his Bumbo seat unassisted for the first time. Like I said on Twitter, it was brief, but beautiful. There is a different kind of sadness that comes with having baby gear that never gets used. All of my memories of Collin sitting in the Bumbo happened when he was on seizure meds, which meant that he was beside himself with irritability and his head was still flopping straight to his chest. It was like a little dream come true when we squished Collin's booty into that seat and he instinctively held his head up. It was almost weird seeing it wobbling around out in the open air all by itself. (That's a red star sticker on his nose - therapies always overlap here.)


2. Collin bounced in his bouncer chair. This is a very similar MOOM to number one, as it involves forsaken baby gear and unexpected success. His movements were small, but undeniable.






3. Collin rode in the seat of a grocery cart for a first time. I don't know what it was about this one, but it buoyed my spirit like few other things have done. Maybe it was from all of the frustrating trips to the store when I just couldn't do what I needed to do because I had no options. Having him close to my face, smiling and kicking like all the other kids was truly magical.

Numbers 2 and 3 are thanks to our new favorite thing: the HuggaBebe. It basically works by making a Collin sandwich, which gives his trunk the support he needs to be able to focus on holding up his head. Definitely the best $30 I've spent in a long time.

Stay tuned for many MOOMs to come!

Thursday, November 18, 2010

Wednesday, November 10, 2010

Gift

Today is my second favorite day of the year: Kyle's birthday (a not-so-close second to Christmas Eve). The only bad thing about Kyle's birthday is coming up with a birthday present. Mostly because he doesn't like anything. And what he does like he doesn't trust anyone else to get for him. And anyone spending money makes him sick to his stomach.

Last year, I kicked major butt with Collin's first music video (There was also this one later. I think we may be due for another one soon.)

This year, Collin and I collaborated a little more equally and got Kyle...suspenseful moment of silence...Collin's first ever drawing.

It was no small feat and involved socks on the hands, tiny markers, packing tape, and elbow props, but it was pretty darn magical to watch and I think we enjoyed making it almost as much as Kyle enjoyed hanging it on the fridge.

Tuesday, November 9, 2010

A Boy Through and Through

Thank you, Burp and Fart Piano, for the perfect end to a Tuesday.

Such a Boy from Annie Kratzsch on Vimeo.

Monday, November 8, 2010

Reconciliation

A dear friend of mine wrote today and summed up beautifully the struggle I have felt recently. She said: "I am so thankful things seem to be going so well for you all lately, but I know that it still is hard and you still have so many struggles."

I am literally awed by the blessings we've enjoyed over these past months. Collin hasn't had an identifiable seizure in almost 5 months. We didn't think that would be possible. He laughs every day. Lots of times. At consistent stimuli. He is moving his whole body with more purpose. He is using his vision. He is making more and more sounds and responding to particular words. He cries - loudly - when he's unhappy and is comforted in my arms. He continues to surprise me with the things I didn't know he knows. There are many times every week when I feel all giddy and ridiculous with happiness because I am so crazy about Collin.

But then there are also all of those times when the therapy I've been doing for weeks or months doesn't seem to be making a dent in his challenge. When I'm getting him in or out of the car for the 12th time that day and he is a limp noodle and can't give me any help out of the carseat or into the stroller and I have to close my eyes for a moment to breathe out the momentary frustration and all of the deeper frustrations pushing up under it. When people around me who I love so much watch their children breeze through milestone after milestone or go on to have more children without concern about genetic issues - and while my heart swells with happiness for them I feel more acutely the reality of our own situation. I have these kinds of moments -- when the weight feels heavy or the task seems huge, when an insensitive word pierces or another treatment or challenge gets added to the mix -- and it all just feels so hard. But I'm still intensely aware of all of those awe-inspiring, excitement-inducing things going on at the same time, so I feel ashamed of being weary or discouraged.

But the truth is, as my friend explained, things are going so well for us and we do still have so many struggles. It's not all one way or the other, and I'm actually grateful for that. That's why, when people offer encouragement about Collin's progress, I want to say, "Yes, but it's so hard for him in other ways," and when people offer empathy about the difficulty of our life, I want to say, "Yes, but look how far he's come and how amazing he is." Somehow, just the acknowledgement of this complexity makes reconciling the two sides so much easier.

Friday, November 5, 2010

Water Baby

As many of you know, I can't say enough about the miracles aquatherapy has worked for Collin. Here's a little taste of why I'm so passionate about it.

It's kind of hard to hear the therapist (who supports him in the water, but doesn't help him or give him any cues), but the first thing she says is "Roll over, Collin. Roll all the way to your tummy." And then she tells him to sit up and show Mommy how he holds his head up. At that point, everyone in the pool starts cheering and Collin gets his favorite reward: going fast in the water.

Untitled from Annie Kratzsch on Vimeo.