Monday, August 22, 2011

First Days

Last week saw Ellie's first day of second grade (second grade!) and Ada's first day of Pre-K. Wow. People aren't kidding when they say that "it goes by so fast." I think childhood is like a glacier. At first there's so little perspective that you barely feel like you're moving and then, all of a sudden, your child is counting the moments until she's old enough to sit in the front seat (age 12 - Ellie knows she has just over 4 years to go) and talking about going away to college. Zoom, momentum.

Oh, also, another first last week:

(Other quick Teddy notes for my later reference: size 2 diapers, blowing lots of raspberries, and rolling over onto his tummy in the middle of the night, getting stuck, and furiously screaming for help. Hilarious. Three bouts this summer of clogged duct with pain and fever: less funny.)

Wednesday, August 17, 2011

Pressure To Keep Silent

On one hand are the folks who say, "Children with Down syndrome are gifts from God," and are relentlessly positive. I have every concern that any complaints I make will be met with judgement.

On the other hand are those who hear my exhaustion and think, "I would never choose this for my own family." I have every fear that any complaints I make could influence others to chose not to have a child like my Ellie.

All this weighs like a heavy load of sand pouring upon my head, pushing me down and filling my mouth, keeping me silent.

All parenting is hard work. But sometimes parenting a child with special needs is especially hard work, and this is what I want to talk about.

It's hard to talk about. Because any example I come up with - of my child pouring a bottle of water all over herself or dashing out into the street or being unable to handle a stressful new experience - a nearby parent of a typically developing child will be able to say, "Oh, my son did the same thing last week."

It's not about a specific behavior; it's about a pattern, a matter of degree, an increased frequency, an unquantifiable difference.

These two things exist simultaneously and without conflict for me: I love my daughter so much it hurts, - and - sometimes parenting her is exhausting and I just want it to be easier. Yes, even though she is a gift from God, a delight, a joy, a blessing. Sometimes the burden is heavy. Sometimes her diagnosis does feel like a burden. For her, I'm sure, and also for me.

The best compliment anyone ever paid me was when a friend told me, "I love watching you with your children; it's obvious how much you really enjoy just being with them."

My love for my children is apparent and undeniable. Recently, I've been coming to terms with the fact that parenting one of them is hard, too.

My child behaves impulsively. She might dash out into the street without looking, she might leave the house while I'm in the shower, she might reach across a hot stove if she sees something she wants above it, she might do something I've never once considered doing. It's hard to child-proof a house for a child who behaves in ways I can't anticipate, and who is tall and strong and smart enough to drag a chair over to reach whatever she needs, and has mastered the magnetically locking cabinets. Moreover, I don't want to childproof the house against her! She's nearly eight! She's my big helper! She can get her own snack, feed and water the dog, wipe down the table after dinner with a clean rag, and reach toys off high shelves for her sister. I want to teach her to be responsible with her body, to think things through, to make good choices. These are hard lessons for any kid, but - you see where this is going.

Primarily, I'm aware of this: as hard as it can be to parent a child with special needs, it's much harder to be the child with special needs. Ellie struggles so much everyday and my heart aches for her. What parent wouldn't die a little inside, seeing her beloved child hurting when things are more difficult for her, when she's constantly being corrected, misunderstood, overlooked?

Next up: Don't discount my child because of her diagnosis.

Monday, August 15, 2011

Hi, Hi

I'm still here; we're just trying to figure out this sleep thing.

In the meantime, yes, more pictures. Here's hoping they really are worth a thousand words!

We are 36, 34, 7-1/2, 4-1/2, and 4 months. The girls had a shared "half birthday" special celebration day to remind us all that It's Not Just About the Baby around here. We're having a great summer with lots of day camps and swimming and family fun indoors. The heat has been terrible, though (glad it's finally relenting!).

What else for a quick note? Four months old, Teddy's chewing on his fingers like crazy, wearing 9 month clothes (!), chatty chatty chatty with the baby coos, and starting to roll over from time to time. He gets stuck in his crib occasionally and needs help rolling back the other way. The other day he wrapped himself up like a burrito in his playmat on the floor by rolling while his feet were on opposite sides of one of the arches. He thinks nearly everything is hilarious, especially his two big sisters. Off to bed with me!

Wednesday, August 03, 2011

Reality Summer

All that middle-of-the-night time I used to waste sleeping, all those evenings we used to go out together for family walks, bike rides, and ice cream runs? I'm now home with the baby during those moments, and I've filled the time with television.  Or, as I like to say: I've replaced sleep with TV and exercise with doughnuts.  This too shall pass. But in the meantime:
  • 1) Project Runway. Welcome back! I've missed you so.
  • 2) So You Think You Can Dance - dance - dance - dance - dance. I wish some of the costumes and routines were a little less overtly sexual, and I definitely need my volume control for Mary Murphy's enthusiastic responses, but this is a family favorite. The girls love "playing" the show as we watch it. Ellie is the host, Ada is a dancer, and Paul and I are the judges. I'll call the finale right now: Sasha, Melanie, and Marko. My vote's with either of the first two.
  • 3) MasterChef: yes and no. I love the premise of the show (home cooks competing like professional chefs!) and the challenges. The whole program is great except for the judging. Ramsay can be a bit too foul and mean and Joe Bastianich can be a bully and worse. He chose one woman who is obviously intimidated by him and he just beats her down, over and over again. Sure, you have to be tough to succeed in that business. But whatever his justification, what he does to her is way past constructive and borders on sadistic. Hell's Kitchen - hell no.
  • 5) Design Star: delightful as always, dahlings.
  • 6) Food Network Star: what fun!
  • 7-11) Chopped, Iron Chef America, Heat Seekers, Chefs vs. City, 10 Dollar Dinners: why, yes, I've finally discovered the Food Network. (While we're at it: a nod to Bravo for Top Chef Masters).
  • 12-16) But I haven't given up HGTV, either: Selling New York, Property Brothers, , Bang for Your Buck, Extreme Living, My Backyard's Gone Disney, etc. I have, however, tired of the constant marathon of House Hunters and House Hunters International. I'm also fairly certain that I'm an expert at home staging though I'm not planning a move.
  • 17) I'm not so into America's Got Talent. And I hear there's this other show like it that's all about singing. I don't watch that one, either.
I have, on the other hand, been watching Primer Impacto and Aqui y Ahora in an attempt to slow the atrophy of my brain. Spanish-language newscasts show lots more dead bodies than network English-language American news programs. The competition is fierce. The basket is no picnic. And the clock stops for no one. Your time starts now. To clarify! I watch 1-2 of these shows per "day," while I'm nursing the baby. With Ellie I watched all of The West Wing followed by the entire series of NYPD Blue. With Ada I watched a lot of Ellen.