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?

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.

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.

8 months ago today

December 2, 2010

Today:

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

Questions again

From Brody:

Why do trees have leaves?

Why do birds eat worms?

Why do girls have long fingernails but no penises?


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The question I was waiting for

So tonight, during questions, the semi nightly ritual Brody and I do, he asked me why he only has 4 fingers, and why his thumb is on the wrong side (it's not). He said, "dat's not fair."

Over the following minutes, i stumbled through telling him everyone is different, that's how God made him, and that he can do everything everyone else can. I told him some people only have one arm or one leg. He asked me "how do day walk or hold stuff?" I told him, "they figure it out. Like you figured out how to draw and eat. They just do."

Then I kissed his hand and said "I love this hand," and I told him I love him if he has 4 fingers or 10 thumbs. He got really goofy, not his usual serious self like he normally is during questions.

Then he asked me why T. Rexes are so mean. And why the moon doesn't shine during the day.

It's amazing to me that I have completed 19 years of education, and I still had no good answers tonight.



- Posted using BlogPress from my iPhone

Sleep deprivation is a form of torture.

I don't sleep anymore because Liam is teething. He's 7 months old. It's still weird to me that I have two children, two boys. How did that happen? I mean, I know how it happened, but I am still coming to terms with the fact that it did happen. Huh.
J and B went to visit family in another state. When Liam and I picked them up from the airport, do you know what Liam did the whole 45 minute drive home? He stared at Brody in the other carseat, giggling and laughing, the kind of baby laugh where he inhales for part of it. I think Liam missed Brody and didn't know where he went to. He laughed the whole rest of the day.

He still doesn't sleep though.

Two things: I post Brodyisms here, and on facebook, quite a lot. People always say "you should write a book" - so here's the thing. How do you write a book about what your child says? That's actually entertaining and interesting to read, I mean.
Second thing, my dear friend who I have known since kindergarten, Megan Abbott, wrote another book. I think it might be a masterpiece. It's getting spectacular reviews. I really, truly recommend that you read it. It's called The End of Everything. You can read the first chapter of it here. It's that rare combination of sublime writing combined with a chilling, unable-to-stop-reading plot. I can even get your copy autographed by the author.