Going into this month of posting in support of Down Syndrome Awareness Month, I am struck already by how there are many days when I have to make an effort to isolate some unique Down syndrome-related quality about the day. When you first hear the news about your baby it is hard to imagine a day could go by when you aren’t thinking about, even agonizing about it. But you find as the weeks and months, then years, roll by that the fact of the diagnosis slips from your thoughts. Oh, it’s there, you’re aware of it, but most of the time it is a low hum in the background.

Davey has Down syndrome.

Davey is also so much more complex than what that sentence represents. Those words can’t begin to capture his essence as a person. And it is that living, breathing, Hi5- water- and dog-obsessed, goldfish-cracker devouring, belly laughing, tumbling little boy who - along with his brother and sisters - monopolizes my thoughts and energy every day.

I think my badge over there on the right sidebar (point, point, point) makes it clear where I stand politically. But I just have to say when I saw little Trig on the stage after tonight’s debate, oooooooo, I melted. He was snuggled into some lucky woman’s shoulder and I found myself nearly overcome with an irresistible urge to reach into the screen and pull him into my arms. Babies with Down syndrome are the snuggliest wee ones on the planet. They just melt into you and melt your heart.

I am joining (last minute) the 31 for 21 blog effort. October is National Down Syndrome Awareness Month and to that end I and many others will blog about Down syndrome every day this month. (I’ll also continue posting about all the other zaniness that is my life.)

Because I am nearing the tail end of the first day, I’ll keep this brief.

Yesterday I had a rare few hours alone with Davey and so we ran some errands together. It was nice to be able to focus on just him. He really is a fun kid to be with. At Target, he kept reaching up from the seat in the cart to pull me close for a tight hug.

Then at Home Depot, as we were checking out a cashier from a few registers over darted over to us and said “Hi Davey!” At first I thought maybe we knew her. Someone from school perhaps? Nope, she’d just heard me use his name. She tried to engage him in chitchat (signs) for a few minutes but he was more focused on the bottle of water I’d just bought him. She did get a wave and “buh-buh” from him. Of course, as she explained, she’d worked with special needs kids in the past, which was evident both in the way she talked to him and in the fact that she’d gone out of her way to approach us when she noticed him.

Rock star. Seriously. They all are, these kids with Down syndrome. Once you know a person with Down syndrome you can’t help but be drawn to them. It’s an amazing phenomonon.

I never dreamed I’d dedicate so much of my life to food.

I spend a good number of hours a day preparing, serving, and cleaning up after meals and snacks. I spend still more hours acquiring food - making a grocery list, doing the shopping, putting away the groceries. If I am at all organized, I spend some time before making the grocery list to plan the meals for the week. If not, I spend too much time every day figuring out what we’re going to eat.

This weekend Dex was helping me make dinner. I told him to look in the freezer for some kind of meat and get it started defrosting. Then we switched roles, he herded kids while I took over making the dinner he’d planned out. As I was moving swiftly from stove to fridge to table and back, he said, “This is the way it should be. The man is the master chef telling the lowly cooks what to make and they do all the preparation.”

“Great!” I said. “I would love for you to tell me what to cook every day.”

I think he was momentarily puzzled by the absence of sarcasm in my tone. But I meant it. How many times have I asked him what he wants for dinner and he’s grunted and said “I don’t care. Whatever you want to make.” He thinks he’s being helpful by giving me free choice. And that’s noble when it comes to every other aspect of life except meal planning. If I had any inspiration I wouldn’t ask. Often the hardest part of cooking a meal is deciding what to make.

My sister has been urging me for years to make a meal plan. I’ve made meager attempts with some success but what I need to do is make a huge master list to choose from. Then I can pick meals for the week based on what’s on sale at the grocery store or what our schedule is for the week, etc.

The other thing I need is fresh ideas. I am going to scour the internet for healthy, nutritious, easy-to-prepare meals that kids (hopefully including my kids) like to eat. If you have any favorites, send them along.

And wish me luck. I’m going to try lentils tonight. Easy to make? Check. Extremely nutritious? Check. Edible by children? We’ll see.

Before I could write this post I had to go stand in the shower and weep for a while.  My heart aches for the parents of these kids.

The fact that I can so easily envision the bus, the students, the parents…. The fact that for the past two years I’ve been putting Davey on the special-needs school van and sending him off with a kiss and a wave (and some mornings a sigh of relief)….  The fact that I have stood on the porch countless afternoons waiting for the white van to back into our driveway, the beep, beep, beep signaling that my son has arrived home….

I am gutted thinking about the moms waiting today.

Davey now attends an out-of-district school. This has transformed his 10-minute ride on local streets to and from a school less than 3 miles away to a 30-minute ride on busy roads and an interstate highway to a school almost 15 miles away. Last year he rode in a school “bus” that was actually a big white van, tall and with some substance. This year, because he is out-of-district and is the only student traveling from our town to that particular far-flung elementary school, he rides solo in a minivan. And not even a regular size minivan, but one that I’d call a submini, seemingly shorter and less substantial than even a regular Odyssey or Sienna.

We had a choice between several programs for Davey’s kindergarten. The runner-up was at a school in a neighboring district that is less than a mile from our house. Even before today I have second-guessed our choice, despite his program and school seemingly to be an excellent fit so far. I just hate the idea of him traveling so far every day, on a highway, in a little van driven by a man who certainly seems nice and competent but whom I really don’t know. I can’t even think about ice and snow yet. And I can’t think about highway entrance ramps and speeding tractor-trailers at all.

And oh, these kids. They are so vulnerable. Davey can’t talk, so I have to find an extra scoop of faith in my heart to even put him on the van in first place. And to think of him frightened or injured and me not being there… I just can’t imagine….

Dammit. I need to go stand in the shower again for a while.

Please keep these families in your hearts.

I left you hanging. Didn’t mean to do that. My life seems full of loose ends these days but I am determined to snip and tie and otherwise resolve the dangling details. In that spirit, I owe you an update on the move. (Or, The Move as it resonates in my head.)

I have not, as I predicted I would not, melted down. I realized, thanks in large part to my sister’s wisdom and tolerance for my craziness, that what was making me feel most crazy was not the idea of our house listing date/potential move being pushed out.. again. That was not a thrill, certainly. I’d leave here tomorrow if we could. But no, what had me crazy was the sudden panic that yet another delay, for whatever the reason, was a sure sign that we’ll never get out of here.

I had no confidence that waiting until spring meant that we would actually list the house and move in the spring. We’ve done the “six more months, another year” dance too many times already.

You see, time keeps dashing forward. My oldest is nine. NINE! His childhood is moving along swiftly, with no regard to my desire for things to change. And maybe it shouldn’t bother me that he’s forming idelible impressions of the world based on New England life, but it does. It bothers me a lot. (Again, with apologies all around. I know I’m a cad.)

So the sense that our plan for leaving will keep slipping forward and never come to fruition when it is thisclose just makes me nuts.

That explains the crazy. Now, what did I do about it, once I was enlightened? I took a deep breath and deep stock of our options. Then I wrote out a plan for us and sent it to Dex. He agreed that it sounded reasonable and good, and we symbolically shook on it. And then I put it out of my mind and turned to the task of enjoying the balance of the summer.

Really!

The Plan

Our hope is that by spring, Dex’s company will allow him to relocate and work remotely, with probably a fair amount of travel. Regardless, we will list our house immediately after the holidays. Once it sells, we’re out of here. (Yes, I’m being fuzzy about the work stuff, but you understand.) I’d love to be able to leave by April, but we could hold out here as long as July. That’s my deadline. School issues - and my own sanity - make it extremely undesirable (as in, hell no) to stay past then.

This is why I have been out kneeling in the dirt planting crocus bulbs. Winter is brutal here, so any bit of color or hint of life come late winter will be a huge advantage once the hoards of prospective buyers come tromping up our walk.

Hoards.

Truth is, I’m ready to pack it in today. I have this itty bitty smudge of time and I don’t want to do anything. Or I want to do everything. I have so much to do. But I have so little time that I can’t really do any of it. And then all I want to do is sit and stare at the squirrels dashing across my lawn and leaping from the hickory to the maple and back again with a great crash of widly swinging branches. At least the squirrels are getting it done.

My posts have been scanty and I apologize.

I am mentally reorganizing my blog intent. I think I will be untangling a couple of threads so that I can focus more on specific topics, like Down syndrome, the parenting ball o’ wax (as artist momma to special needs, twins, large family life), and maybe something else.

I’ll start with a separate Down syndrome blog or page/thread. Otherwise I feel like I’m jumping around too much and not sustaining enough focus with any one thread to…. oh damn, what was I saying?

It makes sense in my mind. I now have to see how it all comes together (or apart). New stuff coming next week once the twins are in preschool for longer days. (Whoever came up with the idea of giving us parents 2.5 hour blocks of time is a sadist.)

Canadian Doctor Warns Sarah Palin’s Decision to Have a Down Baby Could Reduce Abortions

Lalonde says his primary concern is that women have the choice of abortion and that greater public awareness of women making choices like Palin to complete a pregnancy and give birth to their genetically-abnormal baby could be detrimental and confusing to the women and their families.

This makes me too furious to even write a response. Yet.

Ok, there is much to wrap my thoughts around regarding Sarah Palin and the unfortunate politicization of having a baby with Down syndrome. I read articles and message boards and my blood starts to froth and my hackles rise. So I am going to start with this, simply.

Is Trig at the Heart of Media’s Reaction to Palin?

I am pro-choice. Dex and I refused prenatal testing (beyond ultrasounds) for all of my pregnancies. And, surprise! I gave birth to a baby boy with Down syndrome.

The million dollar question: If we had known in advance that Davey would have Down syndrome, what we would have done?

The answer: Cried, read, cried, tossed and turned, read more, talked to people, worried, cried, picked out a name, set up a crib, cried and worried and read some more… and absolutly continued the pregnancy. I am not saying this through the rose-tinted glasses of knowing my sweet son and the wonderful person he is. I am saying this because I am 100% certain that we would have chosen life, HIS LIFE.

Did I mention that I’m pro-choice?

I am very glad that Sarah and Todd Palin chose not to terminate their baby upon receiving the prenatal diagnosis. BUT, I don’t think it was actually a choice for them. And while I wish, desperately, that vastly fewer parents who receive the diagnosis chose to terminate, I strongly disagree with the implication that being pro-choice makes it an automatic or less than heartwrenching decision.  As always, life is much more complicated than that.

And dammit, no one political party, no one side of any debate has the right to claim my son’s existence under its political banner.

He’s mine. You can’t have him.

* It’s important to note that while the Palins, based on their convictions, did not face the same terminate-or-keep decision that many parents do, I do not believe it was easy for them to receive the news of their son’s diagnosis. I do not want to minimize the shock and grief, the emotionally rocky road they surely traveled as they absorbed and came to terms with having a baby with Down syndrome. In this and in our subsequent joy and overwhelming love for our sons, Sarah Palin and I can find common ground.