Archive for February, 2008

This is what it’s like to live with Down Syndrome

I sat down in Addison’s school and watched the children stream in for morning classes. Tiny tots kissed their mother or father good-bye and grasping the hand of a teacher, following the flow of students to the garden to play in the morning sunshine.As I waiting for a free moment to talk to Addison’s teacher, another mother sat next to me. Her daughter, Sophia, had Down Syndrome. She was a beautiful girl in pink stripes and pink tennis shoes. She hung close to her mother as she too watched the children pass.The mother explained she was there to look at the school; her daughter was already enrolled somewhere else. A teacher reached out her hand and Sophia walked away to take a look at the school.What to do we talk about? Us "Down" mothers? Instead of the discussing shirt sizes or what words our children are saying, we share stories about hospitals, therapists, and tongue size.So, did you spend time in the hospital?Does your child have small ear and nose tubes?Does she sleep through the night?Does he walk or crawl yet?Swallow food?Special shoes?We nod in acceptance of each other like two old war veterans sharing a story that we can only understand. So much goes unsaid and instead passes through our hearts. Addison’s teacher arrived and Sophia’s mom wandered off to find her daughter. Funny, when Addison enrolled in this school, there were no children with Down Syndrome, now there may be three. I always knew he’d be a ground breaker, a leader in his field. And I’ll keep bringing up the troops to support him.

Pass the freezer section! Quick!

Two things I should never have in my home: Peanut (or almond) M&Ms or Praline Pecan ice cream.

I’m better off zooming past the freezer section. Then, all I have to face is the check-out lane and those little bags of candy titillating the consumer, knowing the weak souls we are.

Last night, Coco and I finished off about six mini-bags of M&Ms while watching the Decorating Channel and chirping at the television screen our two-cents about the so-so modern/cottage design. O.k., so I had four bags and Coco had two. But it’s over and done for now. Yet tomorrow I must shop again.

Back off fear - I’ve got this one handled

Addison is recovering splendidly from his bacteria/virus/thing. There is always a point when my kids get sick that I think I’m doing everything wrong, and I should run to an emergency room or doctor. This point usually happens about 3/4 of the way to wellness.

Yesterday morning, Addison looked like a wrung-out dish rag. Because of the Down Syndrome, he is this "super-flexi" boy and can do the splits and Yoga positions students around the world would envy. He watched the Clifford cartoon as if he only had hours left to live. I picked up his legs, and they flopped to the floor like a dropped bag of water.

This is it, I thought doubting my apple cider vinegar/baking soda/turmeric/fresh squeezed apple juice and enema* medicines. A doctor can surely do much more than little old me.

Then this show comes on he loves. It’s a perky version, juvenile version of the show Laugh In without the sex or bad jokes called High Five. Five teenagers sing about the five senses and Addison knows the whole song. He sat up and began jazzing right along with the singers. Then his sister Coco let him cuddle a new stuffed puppy she bought with her money at the store. Then, he sipped some of a bottle of some of that homemade medicine. Later he ate some applesauce, took a bath, and played ball around the living room.

He slept through the night. I woke up with that instant thought of terror:

He’s dead. Is he breathing? I should have brought him to a doctor.

I listened. HIs breathing slowly pumped in and out of his chest. I relaxed back into the pillow and behind the light in my eyes, I saw the terror flee - tail between it’s legs. But it looked back at with a glimmer in it’s eye as if to say: I’ll be back again.


*not in that specific order

Would you like vomit with that wine?

Afraid of not getting a parking space close to the school for the first-ever parent-teacher conference for Addison, I left ten minutes early. That’s strange, I thought when I pulled up and the building was pitch dark except for light over the front door. There were plenty of parking spots because the meeting was LAST NIGHT!

Valentine’s day had never been an overly sentimental holiday. I’d always thought my relationship went so much further than a candy-chocolate-commercial-driven holiday. I still remember the most romantic valentine’s I’ve ever received: it was a single rose from my high school boyfriend that said we’d be together forever. I can still remember the rose, just starting to droop a titch, when it was delivered to my homeroom. The note was tied with a red bow around the stem.

Coco holds all holidays in such high esteem, she just might start a new religion around it. She could be the High Pope of Every Holiday Ever Imagined. So I got a gift bag of decorated with hearts for Coco and Addison and the nanny. Addison pointed at the hearts as if I’d just invented flight. Then, Whoa! He got a look at the boxes of raisins inside and the apple, and I almost felt as amorous as I did back in high school.

Coco promptly pulled each item out of the bag and described each item with such joy, I wished everything was that simple.

I served up an efficient dinner; gave instructions to Coco to study for her exam while I was gone; and drove the five minutes to school where I sat in the dark. Well at least I can go home and have a glass of wine and read my book. When I opened the door, the baby was on the floor lying on a towel, his sister and the nanny hovering over him.

He’d thrown up. I took off my jacket and settled in. He threw up some more, and some more, and a bit more before finally konking out at 10 p.m. (I’m consistently amazed at how much food a child’s stomach can hold!) I have no idea if I gave him a food he couldn’t tolerate, or he got a bad bacteria, or it’s a virus. Most of the time, we parents never really know what our kids "get." Whatever it was, the treatment was the same: extract the bad and let the good come in.

In the moments when I miss the rose and the candy or the glowing candles, I am usually zapped back into the meaning of true love: action. It is a verb after all. Let the good come in.

Still Running

My legs are on fire, and I make a lot of funny noises when I bend down. I dread going down the stairs. I grab the railing tight, take a breath, and grunt as I descend. But my muscles are alive, which means I’m alive. They’re yelling and screaming at the change. Sounds familiar.

Although a goose could run faster than me, I’m getting out there, taking it up a notch; wondering what brand of shoes is the best; wondering where I can get some running shirts. I think I’m hooked.

What shape is your poop?

Oprah sprung up on a search I was doing last night. So, I started poking around. Dr. Oz is the new corespondent of this decade for Oprah as Dr. Phil was in the past. I’ve seen a show with Dr. Oz and he’s vibrant and plucky. He’s determined to help us all conquer our medical demons so we can all live a full and happy life.

There was a test. So, I clicked and began answering the questions: How many times do you walk? Get the heart rate up? Have a talk with a friend? Eat fruits and vegetables? Take fish oils? Floss? Smoke? and on and on it went. I didn’t know what to answer about the sex question since that’s a null and void issue. I didn’t understand a few others because of the odd wording. (But with multiple choice, when in doubt pick B).

Then we came to the poop question: What shape is your poop? C - S - J - dripping water fountain - goat pellets? This is a question that makes anyone pause and think. I switched the answer several times because I just couldn’t decide. The problem was I needed a box marked: none of the above.

My score? Average. I am average. Get a move on! said the computer screen. Average cuts the cake, but if you continue on "as is" you’ll be pushing up daisies before you’re 70. Bravo for the call to action. I took the average label personally for about a minute (well, o.k. it entered my dreams and depressed me for the entire morning).

Someone in my family used to say: Sh__ or get off the pot. Ah, I’ve see we’ve come full circle. And,what shape is your poop?*

*although I know dripping like a water fountain is not good and goat terds are bad, which letter of the alphabet should it be? Oprah doesn’t offer the test anymore, so try this to see what mean you fall in.

Just Pick the Pasta and be Done With It

One of the big benefits of learning a new language is that I have this ability to phase it out on command. In the age of cell phone conversations outnumbering face to face conversations, it is a relief to tune out that high-heeled woman chatting at the grocery store on her cell about which item she should bring home. In bank lines, I can be right in front of the guy with the that Bluetooth thingy strapped to his head and continue merrily singing You Are My Sunshine without being interrupted. It’s harder to tune out English. One time, in the States, I was standing in line at the Post Office and this woman was going on and on about how she got in and out of the shower and what trouble she was having navigating the tall sides of the tub. Should we ALL be subjected to this?

When I see people talking on their cell phones in a restaurant, I get sad. We’re loosing touch with eye contact, and voice and vibe contact. It takes so long to book that lunch date, why spend time chatting away with someone who’s not there? It’s hard enough to talk and connect when we are in front of each other let alone when an electronic devise is stuck to your ear.

Is it really that hard to make an executive decision on pasta?

This is What It’s Like to Live with Down Syndrome

Mingling with a group of new people the other night, I was asked several times: What do you do?

I stumbled over the answer. A few times, I actually didn’t know what to say. This is when I become torn on telling someone I’m meeting for the first time that my son has Down Syndrome. It’s a huge part of my life. And for much of the day, it defines what I do. I know this will change, but for the moment getting a little human to walk -connecting all those neurons - is no small task. Then there are times I think I should be more stoic and not mention it at all.

The thing that I like about mentioning that my son has Down Syndrome is that it explains a lot, and it cuts through a lot of the bullsh__. I relax, and I don’t have to talk so much about why I’m not getting so much done out there in the "real" world. People seem to have an immediate understanding of some of the challenges I may encounter in caring for a child with special needs.

So, I’m learning to trust some sort of equipment in my brain that intuitively knows when to reveal this THING about my life. I guess it’s usually if I feel the person and I have a chance at connecting at a level that does not include pity and instead empathy. Maybe I feel there’s a chance I will get to know this person more, and in that case, why beat around the bush?

One time later in the evening - and I thought this was hilarious- I got asked that question again: What do you do?

I’m a mother.

Pop went the balloon. Pause went the light and happy conversation. The look on his face said: And that’s it?

Most of the time, yeah, that’s it.

I then followed up with the fact that I was a writer. Ahhh…his head nodded and welcomed me back to the conversation.

I didn’t stay much longer; I had to get to bed. My day job gets me up early.

Not So Much Like the Wind More Like Spilled Yogurt

Two days. I’ve kept to my strict running schedule. After two days, I’ve gone running for 30 minutes and walked for the last ten. But, I can’t say I looked like the wind. If someone passed me on the road maybe they’d say resembled a carton of spilled yogurt running down a crooked floor.

Run Like the Wind

It’s been a long time since I’ve done an "exercise." One of those real ones with competitions, good things for your health, sweating, and all that. I’ve dabbled in walking when I’ve felt good enough over the last three and 1/2 years, but it’s been a long time since I’ve been able to dedicate a few calories to something other than keeping my kids alive.

Addison’s respiratory problems, his surgery and my awful, awful pregnancy have burned enough calories for three people.* Addison has slept now 12 nights in a row. He sputters and coughs once in awhile, so I cannot say I’ve lulled away each night in a deep stupor, but compared to the up and down routine of keeping a child breathing at night, this is nothing short of a miracle. I now would like to breath oxygen deeply because I am taking in the morning air while trotting around the lake not refilling the vaporizer with more baking soda and water.

Running has never been a strong point. I’ve wrestled with lots of athletics and have probably done every "new" exercise invented: boxing, aerobics, laps, sprints, weight lifting, stairs, yoga, sit ups, pull ups, and even dancing while stepping up on that box thing (what was that?)

The last real running I did was probably 15 years ago. It was a 5k. I walked the last K. If I can get my body to cooperate, it makes sense for my budget and time. I can do it just about anywhere, and it really only takes a pair of good shoes. And the grace of God so I don’t keel over with the ducks. I’ll keep you posted.

*And then there’s the stress diet called: divorce.

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