Thursday, July 26, 2012

All That Matters

I've heard it dozens of times and said it myself at least that many:

"I don't care whether it's a boy or girl. All that matters is that it's healthy."

It is an answer that really has nothing to do with pink or blue. It's something we say in an effort to show that we will love our child unconditionally.

Since Collin came into my life, though, these words have taken on new meaning to me. For a while, they hurt my feelings (My son isn't healthy. Does he not matter?). Then, they made me angry (Would you say 'All that matters is that it's smart?!). But finally, I think I see this statement for what it is: a way to block ourselves from thinking about the worst possibilities. It is a hopeful assumption that all will be well. Which, in a way, is perfectly natural. Who doesn't wish for the best for themselves and their child? But I've come to think that in closing our eyes to potential complications or hardships, we actually do ourselves a disservice in preparing for parenthood.

Because what if something is wrong?  What if, in counting the proverbial 10 perfect fingers and toes, something doesn't add up? What if an examination of your precious one brings worried looks to the doctor's face? What if the uttering of a diagnosis causes your imagined experience of motherhood or fatherhood to fall away and leaves you stranded in a world no parent would choose? That would be terrifying, wouldn't it?

Yes. It would.

But, listen.

To you, expecting parent, I say: Don't be afraid to be me.

I -- my life, my son -- am the thing you are hoping won't happen. Many of the 'what if's came true for me. You think you wouldn't be able to bear the impossible decisions, the heartbreak, the crushing uncertainty. But you would. You would do whatever you had to do.

And the thing is that my life is good. Really good. Not make-the-most-of-what-we-ended-up-with good. More like so-much-better-than-I-could-have-thought-to-ask-for good. It is rich and full of beauty because of Collin. Your life will hold love and happiness, too, regardless of the physical or developmental characteristics that come along with your precious little one.

Yes, we've endured horrors; but I can't help but think that they wouldn't have been quite so horrific if I hadn't denied all outcomes other than health and perfection before Collin came. Of course, there is no sense in dwelling on everything that might go wrong. That will drive you crazy and steal your joy. But ignoring those possibilities will do the very same thing by creating a false security that hinges on a completely uncontrollable factor.

So, the next time someone asks you about your preferences regarding your child, take heart. Take it as an opportunity to step out of the whirlwind of showers and registries and nursery planning and remind yourself of the magnitude of what's happening. See your coming parenthood in all of its scary and wonderful possibility. Remember that all that matters about this child is that it's yours. And answer with confidence that you will love this little one, no matter what.

Monday, July 23, 2012


I went through our pictures and videos from the past few years recently in an effort to make some room on my poor old computer (it's not as spry as it used to be and apparently can't handle thousands of pictures of Collin). I hadn't seen many of the early videos in quite a while and one thing I was struck by was how much physical affection I was always pouring on Collin. He was so irritable and uncomfortable from his seizure meds and the only thing I felt like I could do that he understood or that made any difference at all was to hold him and touch him all the time.

Maybe because he has become such a big boy or maybe because he is generally so content, I haven't been cuddling Collin as much recently. Late last week, he went through a period of sleep trouble. He seemed agitated and unable to calm down at bedtime. It hit me one night as I watched him wiggling and gnawing his paci in the monitor that other three year olds can call out for their mom when they feel scared or just can't sleep. Other kids go through clingy stages. And just because Collin can't physically cling doesn't mean that he doesn't have the feeling of clinginess. So I disconnected all of his wires and tubes and took him out of his hip brace and just held him and rocked and sang well past bedtime. When I put him back down, he was a different kid and fell asleep in about 3 minutes.

I've learned my lesson.

Wednesday, July 18, 2012

How to Interact With Collin's Parents

It occurred to me after the post on how to interact with Collin that it can also be intimidating for some people to interact with parents of a child with special needs. Many of the go-to topics of conversation just don't seem to apply to us and it feels so easy to accidentally say something offensive. It's unfamiliar territory for many people and consequently difficult to know how to move forward. That's why some people avoid anything beyond a 'Hey, how are you?' while others ask for what amounts to a complete medical and developmental history along with our projections for his future.  So, what do you say? What can you ask?

I don't claim to speak for all parents of kids with special needs, but here is a general list of practical tips that apply to lots of situations. Don't take it as a list of rules, but rather as guidelines to simplify things and help them seem less scary.

1. Go ahead and ask. 
Collin is probably different than any other kid you've ever met, so we don't expect you to know all of his cues or understand why he does what he does.  Of course, it is difficult to have to answer questions about things that would be self evident with most other kids, but that's no one's fault and we would rather you know than not. In a way, the more you understand Collin, the more you understand us.

Which questions should you ask? We talked about it a long time ago, and it still holds mostly true: be specific and focus more on 'what' questions. 'How is Collin?' is a question that requires us to either go the vague and superficial route ('He's good!') or the detailed and harrowing route ('How much time do you have?'). 'What did Collin do today?' 'What is that thing sticking out of Collin's belly?' and 'What is Collin saying?' are all totally acceptable and manageable. Also steer clear of questions about the future. 'Will Collin ever learn to eat by mouth?' is a question no one can answer. And does it matter, anyway?

2. Talk about your own kids...but not too much. 
If you have some, we want to know your kids too! There is no reason to be uncomfortable talking to us about your typically developing child. We want to hear about their personality and what they're in to. That being said, we might not want to hear about how they are hitting all their milestones way before all of their peers and are in the 99th percentile for everything measurable. Honestly, though, most people other than the grandparents might not want to hear that.

3. Talk about things other than kids. 
We read books and watch movies. We're interested in farming and good food. We are knowledgeable about things other than therapies and medications and durable medical equipment and it feels great to have grown up conversations that have nothing to do with parenting or sleep schedules or even Collin.

4. Be okay with differences and difficulty.
There are a lot of things about our lives that are the same as yours, but there are a lot of things that are very different, and that's okay. The more okay you are with it, the less uncomfortable it is. Likewise, there will be times when things are hard for us in a way you can't really understand. That's okay, too. Don't feel sorry for us and don't feel like you have to say something to make it better. Just recognize the difficulty and be there with us and for us.

5. Remember that what matters most to us is your heart.
We're not looking for perfection here. We don't want anyone walking on eggshells around us and we've both said our fair share of stupid things to other people. What really stands out to us is your interest, your concern, your willingness to step out into something unfamiliar because you sense it might be worth it.

Collin's best bud at the aquatherapy pool started off their relationship with a somewhat rude inquiry and even though she still asks awkward questions about what Collin will and won't be able to do in the future, she also cuts coupons for him and bought him a plush orange fish that reminded her of him last summer. He smiles when she crouches down on the edge of the pool and talks to him. She sits with me while he swims, sometimes making light conversation, sometimes just sitting and enjoying the show.

In a way, conversing with a parent of a kid with special needs is like getting to know someone from a different culture. It involves asking, sharing, and working through awkwardness. It requires reaching out and across and identifying both likenesses and differences. But once you get started, you realize that the gulf is not as wide as it had looked at first; and what results is richness -- something better than before.

Thursday, July 12, 2012

Summer Fun Boot Camp

Collin is hitting it hard this summer with two aquatherapy sessions and one hippotherapy session every week. Not to mention our own trips to the pool and the NACD therapy he does at home every day. It does my heart good to see him worn out at the end of the day from playing so hard, just like any other 3 year-old in summer.

And the result, besides a happy boy? A much stronger core, much straighter standing, much more overall body awareness. He is easier for me to get in and out of the car, up and down off the floor, onto and off of the potty. After analyzing his measurements in his most recent nutritionist appointment, we discovered that he has gained a pound and a half of pure muscle over the last two months (plus his head is still growing, indicating further brain growth!). That's pretty good for a kid who only weighs 29 pounds all together.

Here are a few pictures of his summer adventures so far.

Collin has switched to a different horse named Captain.
Captain has a much smoother gait and he and Collin have
really taken to each other.

Swimming with Daddy. We've graduated from the life vest
to swimmies!

Collin has improved significantly at every riding session.
This week he didn't complain once, pushed himself up with
his arms, and didn't take a single break for 15 minutes -
that's as long as his entire first session! He kept going for
25 minutes total.