Wednesday, September 14, 2011

Happy Realization

I sat at the dining table the other day, munching down on an egg-yolk-soaked bagel, when I stopped with the bread an inch from my mouth. I wasn't sad. The realization made me stand up in excitement. I wasn’t sad! I was having an ordinary morning! And I hadn’t though about Down Syndrome for hours.

It’s the strangest thing. No, I certainly haven’t forgotten about Hunter having DS. I research many times a day, looking for therapy ideas, nutritional intervention, any way to make his life easier and better. (I’ve found some extremely hopeful ideas too!) But my outlook on it has changed completely in the last four weeks.

I think I’ve really accepted it, for one thing. Hunter does have Down Syndrome. I believe, for a while in the back of my mind I still thought the test was wrong. Now though, I can recognize it in him: in the almond-shaped eyes, the insignificant brows the mild low tone in his upper body. (He has no other physical features.) The amazing thing is that instead of being dismayed, I’m ok with it. I actually think the facial features make him cuter! He is exceptionally cute, anyway: people who have no idea of his Ds comment that he’s the cutest baby they’ve seen. Even artists comment on the perfection of his features.

I still remember the day I really saw the DS in him. I also remember my emotion. Not fear or repulsion or sadness. Instead, it was a sort of relief. Oh. He does have some features of Down syndrome. So what? I still love him. He’s still super cute.

(As a side note, I’m delighted to discover that the DS stereotype look is just that: a stereotype. People with Ds are all shapes and sizes and heights and weights and levels of beauty or handsomeness, just like typical people.)

This is not to say that I love Down syndrome. In fact, I hate it. I know it’s going to make life harder for my son. I don’t for a moment think that chromosome and all its troubles defines who my son is. He is Hunter, who happens to have Down syndrome, just like he might have had spina bifida or cerebral palsy. I’m excited at the research being made to alleviate many symptoms of Ds. I’m thrilled that there are many ways to help already and that there will be breakthroughs in Hunter’s lifetime.

I don’t love Ds. But I do love my son, and I’m ok with it. I still have moments of panic, but they’re related more toward my fear of not doing enough to help him. Those gut-wrenching, heart-stopping moments of devastating sadness, why my son? why this heartbreak to us? are almost completely gone.

I can’t believe we’ve come so far. I credit it first and foremost to God, secondly to my husband, and thirdly to family and friends, new and old, who offer unconditional support, humor, advice, and cheering. And beyond them, I credit it to this wiggly, demanding, incredibly cute bundle of personality named Hunter.

Tuesday, September 6, 2011

I'm Driving My Son Crazy

"Hi Mom!"

"Are you taking photos of me again?!"

"I hate it when you point that thing at me!"

"Fine. I just won't be cute. NOT. CUTE. AT. ALL."

"Maybe I can sneak off when she's not looking..."


"Fine. I'm just going to sulk."

Saturday, September 3, 2011

Can You Say "STRESS!!"

Life has been a bit stressful lately. Translate “a bit” “as insanely outrageously” and you’ve got an idea of what I’m saying.

Why? Where to start!

First of all, the Jeep (our only vehicle) decided to break down last week in every way a vehicle can break down, with a grand finale of a blown engine. This dandy development means we are vehicle-less for at least a month. Now, please understand. This is not quite as desperate a case as if we were still living in the wilds of Wisconsin, where a vehicle is the only thing between you and starvation. (Unless you can walk 30 miles. One way. Or enjoy raw venison with a side of toadstools.) Tanner can get to work. I can (with effort) get to the grocery store. But that is it. No beach. No library.

Cabin fever, anyone? The temperature is rising.

Add work problems, post-partum depression, and a cancelled vacation to that, and you got stress.

The real extent of the stress slammed home to me the other day when I woke in the night, reached over to touch Hunter, and found his little body limp to my touch. Panicked, I grabbed him, only to have his flaccid body slip like water through my hands. He fell into my lap like a ragdoll. Every muscle was loose. Even his toes were floppy! And his breathing was so shallow that I stayed up until daylight, watching to make sure he didn’t turn blue.

By daylight, Hunter had awakened, demanded food, and seemed to have returned to normal. Not taking that for granted, we borrowed a car and ran him to the pediatrician, who send us to the ER with a script for “life threatening events.” If you’ve never been handed a piece of paper which says that your child has experienced a Life Threatening Event, I hope you never are. There’s an odd sort of panic that slowly clenches around you until you want to race to the nearest doctor with your (perfectly normal-appearing) baby in your outstretched arms yelling “DO SOMETHING!!!”

Anyway, long story short, the ER folks were clueless as to what had caused the incident. The doctor’s best guess was that he had been suffering from long-term stress and had gone into a deep comatose sleep to recover.

My stress was hurting my baby.

Mommy guilt is a horrible, stomach-wrenching, chest-hurting emotion.

The next day MonkeyMan had his first therapy appointment. He was very sleepy, so he didn’t perform anywhere near as well as he could have. However, the therapist (an awesome lady!) still scored him very high on attention span and cognitive ability. She confirmed that he had low tone in his shoulders/neck but fairly good tone everywhere else. (I’m now OCD about tummy-time, much to Hunter’s annoyance.) She also commented that he showed significant signs of stress (hiccupping, hyperventilating,, etc).

More guilt. Now I’m stressed about being stressed. Lovely.

Is there a bright side to all this? I don’t know, I’ll say something if I find one.

Oh wait, I just did. He’s curled up next to me, watching my type with big blue eyes. One corner of his mouth is quirked in a half-smile as he wiggles his feet in my lap.

My little munchkin makes every day a little brighter.