Monday, August 22, 2011

First day

I didn’t cry today. I teared up.

As we were standing outside waiting to go in (the kids go in themselves) I crouched down and told him how much we all loved him, and how proud we are of him, and how much fun he is going to have. He asked me if I was going to cry. No, I said. Then he pushed my sunglasses down my face to check. I held it together and he smiled.

This weekend we were driving somewhere on a boring errand, and he was so helpful and positive and sweet. I looked back at him in the car and this exchange followed.

Me: You really are a good boy, Brody.
Brody: Even though my hands are different?
Me: Especially. I love your hands. And you will realize when you’re older than being different is a good thing. You won’t want to be like everyone else.
Brody: Will my hand be straight when I’m older?
Me: Well, no. I mean, we could make it straight, but it won’t automatically be straight……Do you want to make it straight?
Brody: No. I like it dis way.

His new teacher wanted to know if he was comfortable talking about his hand to the class. He said he was. The idea is that the teacher raises it the first day, then it's not an issue later on.

The school called me around lunchtime saying that he had thrown up. Turns out, he had gotten hamburger stuck in his throat because of his narrow esophagus. I know this because he was hiccupping. Do all TEF kids hiccup when the food gets stuck? It happens periodically. I don’t know if we need another dilation surgery or not. It’s been a couple of years.

I cannot wait to see him tonight. I feel like it’s been a week since this morning.

Sunday, August 14, 2011

Wisdom hurts

I just had a lovely weekend away, in Vegas, with 3 good friends. I missed the boys like crazy. I came home, no thanks to flight delays, and Brody said, as we were cuddling, that he wished we didn't ever have to go to school or to work ever again.

Then it hit me.

He starts kindergarten in one week.

And my baby is gone.

And a wave of regret and sorrow crashed over me like I haven't felt in a long time.

I should not have been at work these years of his life. I can't believe all the hours and days I've missed of his little life while I was at work. And he was growing up. And now in one week he starts elementary school and I'm never going to get that time back and I should have stayed home we should have figured out a way for me to be home with him all this time and I can't believe I missed everything I missed and I can't believe I didn't realize before now, before there's only week left. And where did the years go and why didn't I spend them with my son instead of at work and what will I do how will I make that up to him?

One week. Why did it take me so long to see?

Wednesday, August 10, 2011

It's that time of year again....the letter to parents

Brody starts kindergarten in 12 days.

I'm dusting off the annual "Letter to parents", as I have dubbed it on my computer, to print and leave with the parents of his fellow kindergartners. I did not send the letter to the soccer parents, or the swim parents, but I think kindergarten - with a new school - is fair game.

It's funny how the letter changes over the years. That could probably tell something of me more than him. We went to the summer picnic of the Colorado UnLimbited group this past weekend. I think it's a good age for him to go - he's noticing his differences, and talking about them. As in, walking up to people and saying, "Look at my arm! See how long it is?" or, at a carnival, telling the guy running a game he wanted to play, "My arm isn't that straight." These comments are not in response to anything said to him. Luckily, so far everyone I've watched him say it to has acted nonplussed, and uninterested OR has said words to the effect of, "Wow, that's cool you get to be so different." Clearly this world is not the 1970's that I grew up in.

We were at the grocery store a few weeks ago, and Brody was in rare, entertaining form. He was riding on the end of the cart, hanging on while I pushed. He was commenting on how much he loved all the fruits and vegetables "MOMMY!!! Look! MUSHROOMS!!", and being my helper, and he'd drop the food into the basket with great flair and showmanship. We had people laughing at his antics within 5 minutes of our foray into the fruit section. And I had no fewer than 3 men talk to him or me. "Are you helping your mom?" etc. One guy asked, "How old is he?" I answered, "Almost 5," and he said, and Brody heard, "He is hysterical," and chuckling, walked past us. I looked at Brody and said, "Well, that was nice of that man," and Brody responded, "Yeah, and he didn't even see my arm!" What does that mean?

I digress. Can a 5 year old gain perspective? I don't know. But I can, and seeing the other kids and adults live so well with their limb differences at the UnLimbited functions certainly provides me confidence and hope.

Anyway, here's the letter. It seems really long to me now. I wrote it when I only had one child. (Ha! Maybe that's it.) What parts can I cut out? Help!

We’re writing this letter because, in the past, some of Brody's classmates have asked him questions like “What’s wrong with your arms?” We want to help everyone be comfortable with his limb difference.

Brody was born with bilateral radial hypoplasia: specifically, he was born without the radius bones in both forearms and without thumbs. Brody has had several surgeries to try to help straighten his arms (which do not like to grow straight) and to move his index fingers into thumb position. We are proud to say that he now has three fingers and one thumb on each hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.

This is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms grew that way when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.

We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.

While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has.

Brody adapts easily. He feeds himself, likes drawing and playing catch, loves playing tennis, lacrosse and basketball, and wants to have sword fights on a daily basis. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.

We just wanted to let you know that we welcome conversation about our son and we look forward to any questions you or your children may have.

Wednesday, August 3, 2011

Reducing exposure to sadness

Do you ever just not engage with a story or a person because, frankly, it's just too sad? I have a lot of connections to people with Vacterl children, and a lot of those people are connected to other people with sick children, and then my friends who know friends where the parents of young children are sick and.....I just can't anymore.

A little girl I followed, who had a form of Vacterl, died recently. I cried for hours over that little girl; she was within a month of Brody's age. It wrecked me, and I'm not even close with her family. I have to make a conscious decision to stop. I am subscribed to probably 10 caring bridge sites and 15 carepages. I'm friends on facebook with an inordinate amount of people who have serious illnesses in their lives. Except for, currently, one person, I just can't participate in supporting them. I unfriended a woman on Facebook because all she would post about was her dead child. I mean, I didn't know her except online, and through someone else, and she's a lovely person. But I couldn't take seeing her posts.  I'm going to hell.

And it's not just illness. Tragedy too. Like a friend who has a friend whose child got run over by an ATV, or another friend's cousin is terminal and has a young child.

These are my worst fears. And I cannot stand to know about them. It brings me down to a place I don't like, and I can't process it. I think in the age of internet, so much of the information that we can access is informative and it can be life-changing.  The support one can receive is awe-inspiring. But I have to protect my state of mind, right? I mean, I just cannot support and be involved with every sick person I know about. Right? Or am I bad person?

Even if it makes me a bad person, I am still limiting my exposure.

Tuesday, August 2, 2011

8 months ago today

December 2, 2010

(I know it's sideways. It's not working)