When Sam was in the NICU, they used to "throw us out" from 5-7pm for shift change (and conveniently also, dinner). We ate a lot of restaurant food in those 19 days. Restaurant food and trail mix.
One particular Friday evening not long after Sam's diagnosis, I remember sitting with Sam's dad at Wok Hay, a local Asian restaurant. We were there together, but I was checked out. It was like I was there alone, observing from inside myself everything going on around me. A family came in and were seated at the table next to us: a mom, a dad, a little girl, a little boy. They were beautiful and blonde and thin and perfect. PERFECT. All four of them. Two well-behaved children and their beautiful parents, eating Chinese food on a Friday night.
I managed to hold it together through dinner, in spite of my silent envy, my contempt for the beautiful family next to us. But by the time I got into the car, I was in tears again. "We'll NEVER be that family. We'll never be a normal family out to eat on a Friday night.We love to go out to dinner after work on Fridays, and we will never get to be that family!! At best, we'll be the family who is the object of everyone's rude stares, the questions about the poorly behaved child while TRYING to enjoy a dinner out." My dreams of being that family were dashed. (It doesn't matter that I'm brunette and tubby. Our baby in the NICU was definitely what was keeping us from being the tall, thin, beautiful blondes at the next table.)
Fast forward to last night. A beautiful early autumn evening, 21 months later. The three of us had a nice walk on the greenway, and decided to get dinner after. Chinese sounded good to Sam's dad. I couldn't agree more. The three of us happily ate our dinner. No staring, one very small outburst when we took away the fried noodles (which then spilled tea and water on me), and an almost 2 year old who ate his weight in moo shu vegetables. A perfect family outing.
Friday, April 6, 2012
The little guy's personality is really starting to shine.
He might be saying "all done" and "I did it!"
He calls me "Dada," especially when I try to get him to say "Mama."
He is signing " more."
He claps when asked, and has also done it when we say "Good job!"
He belly crawls quite well, pushes into a sitting position, and is doing better with actually sitting near what he wants to play with.
My favorite thing he does is a little trick I call "reverse hand over hand.". For those outside the OT world, "hand over hand" is just how it sounds. You use your hand to move the child's hand, to model the action. We do a lot of hand over hand, and He has really picked up on it.
He knows where the light switch is, but is not strong/coordinated enough to turn the light on/off. So he reaches out and touches it, then grabs my hand and uses it to flip the switch. He does the same playing his mini keyboard. Today he helped Daddy strum his guitar by employing this "RHOH" technique! Apparently Daddy doesn't do it right!
He also made up his very own game. It's sort of like peekaboo, but with an interesting twist. For about 6 months, he's been "playing peekaboo" where I cover my eyes with my hands, and then he pulls them down. I say "peekaboo!" and he laughs, while putting my hands back over my eyes. (He graduated to hiding his own eyes with a blanket a couple months ago.). The NEW game is even funnier: instead of covering my eyes, he covers my mouth! Nothing like your 16 month old essentially telling you to shut up. What will he have left to do when he's a teenager?!
We will have to wait and see on that one. For now, I am one proud "Dada...Er, Mama."
Posted by Alyssa at 10:39 AM
Wednesday, March 21, 2012
March 21 is World Down Syndrome Day...3/21, to signify the three copies of the 21st chromosome that those with Down syndrome carry.
We will wear yellow, and we will sit with our DSAG at a park for a picnic. It is our "special day," and we will celebrate.
With a heavy heart, I will bring my beautiful, charming, funny (and smarter than anyone knows) fifteen month old son to be around others of all ages who are like him in chromosome number, possibly in visage, and maybe or maybe not in character.
My heart will hopefully not be heavy while watching these people with Down syndrome enjoying what is forecast to be a gorgeous day. Rather, my heart will ache because of those who have no horse in this race, but feel the need to express an opinion about the ethics of raising, or not raising, a child with Down syndrome. I will see beautiful babies, handsome boys and pretty girls who have been reduced to "mistakes" and "burdens" and "less than.". It's disappointing to think they may not receive the respect of their peers, teachers, authority figures, government leaders.
My heart will be heavy because of a bill on the docket in AZ (already law in some other states) that "would allow physicians to lie to a pregnant woman about her baby if it might prevent an abortion.". In the discussion of this bill, Down syndrome has come up often, hot on the heels of the wrongful birth suit in Oregon that awarded parents $2.9 million because they would have aborted their daughter if their prenatal testing hadn't been falsely negative.
I have one sentence to sum up my feelings about this: "When it comes to Down Syndrome, THE TRUTH will prevent the abortions."
In our so-called enlightened world, we have special education, social supports, early intervention. What we don't have is a pervasive and generalized belief that people with Down syndrome have the ability to make meaningful contributions to the world.
We have many physicians and genetic counselors who don't present the truth about Down syndrome. They present inaccurate statistics about potential health problems, making expectant parents feel as though their child will inevitably face a lifetime of poor health and feebleness. They imply that a child with Down syndrome will hurt siblings, cause marriages to fail, lead a sad life, detract from the education of "able" students in the classroom. Some people with DS do have health problems, but medical advancements have made them far more manageable than ever before. Most of those "social consequences," it turns out, are frighteningly mistaken for truth.
This misinformation is given to expectant parents facing prenatal diagnosis of DS, and some was even given to us when our screening ultrasound showed soft markers. As I have mentioned here previously, our OB tried to bully us into invasive prenatal testing with this "information.". It is also given to parents while they hold their precious newborns.
My feelings on abortion aside, it is legal in our country and that is not likely to change. What we need is fair, honest, and ACCURATE information to be given to expectant (and postpartum) parents, rather than agenda-driven information from either camp of the abortion issue. If more people knew that raising a child with Down syndrome was not the burden they envisioned based on misinformation, I firmly believe fewer would have abortions.
If accurate information was given to the lay public without ties to the DS community, we might make some headway there, too. BY FAR, the worst thing about raising a child with DS is the rest of the world. Seeing or hearing your child reduced to a stereotype, knowing that your child is many times more likely to be restrained/secluded/physically disciplined at school, reading about group homes being driven out of neighborhoods...this is infinitely worse than the thought of your child not winning the Nobel prize.
On this World Down Syndrome Day, the World needs to know that people with Down syndrome deserve respect and equality in all stages of life...just as those without it do.
Posted by Alyssa at 6:19 AM
Saturday, February 18, 2012
Do you ever have one of those days (usually near the end of the week) when you think, "We don't have any food in the house but I really don't feel like going out?"
That was us today. My husband is going out of town for about a week (leaving tomorrow morning!) and it was important to me that he have a nice healthy send-off dinner. I knew we didn't have any meat or fish that wasn't frozen, so options were limited. I thought about a sweet potato and chickpea curry, but I think Little Habibi ("loved one, male" in Egyptian Arabic) and I will have that while Big Habibi is away. Mommy has vegetarian leanings. :-)
So I thought through the contents of the pantry and fridge and dug out the following:
1 box spaghetti (we buy Smart Taste for extra protein and fiber...on sale 4/$5 last week so we have many boxes)
1 can of pumpkin purée
3 cloves garlic
1 small yellow onion
1 four oz package of diced pancetta I keep on hand for just such an emergency. (If you're without an emergency stash of pancetta, 4-6 slices of smoked bacon would work fine...the only difference is that pancetta is not smoked.)
1-2 cups Chicken stock (Mine was homemade because I had it in the fridge. That is totally not necessary, a box broth is just fine.)
Dried ground sage (fresh would be arguably better)
(These ingredients are listed in the order I took them out, not the order they were used. Sue me. It's my first shot at this...)
So, big pot of water on the stove. I salt at the beginning because I don't like how the big grains of kosher salt make the water boil over. Yes, I know this takes longer to make the water boil. Once it's boiling, drop your pasta. Time it so it is al dente/firm, so it can finish cooking in the sauce.
On another burner, place a large skillet. DO NOT turn the skillet on yet. Put the pancetta in a cold pan. The pan needs To be cold in order to render the fat from the pancetta/bacon. Once the pancetta is in, put the heat on medium low. While pancetta is rendering, dice onion and garlic (and if using, fresh sage leaves). You're not after crispy bacon, but you want most of the fat out, and cooked through. This didn't take long, though I didn't time it (5 min, maybe). I had no idea this recipe would be a keeper, let alone a "sharer."
Once the pancetta is cooked through, pour off most of the fat that has rendered out. Reserve for another purpose if you like. Leave the pancetta in, and add the onions. Allow them to sweat until translucent. When the onions look to be almost done, add the garlic. If using fresh sage, throw it in now. Do not allow the garlic to brown, just soften. When the garlic is done, deglaze with about one cup of stock. Scrape up the brown bits from the pancetta. Add dried sage after the stock.
Allow to cook for a few minutes until stock is hot. Add 1-1.5 cups of pumpkin purée (1.5 cups is about a 15 oz can) and mix thoroughly. At this point assess the consistency. You can add more stock if you want more liquid or more pumpkin if you want your sauce thicker. Also assess for seasoning at this point and add salt/pepper if needed. Mine was ok, pancetta is pretty salty/peppery, and the stock was also seasoned.
About this time the pasta should be ready. Reserve a cup of pasta water and drain. The pasta should go directly from the strainer to the skillet and be tossed in the sauce. Adding a little of the starchy pasta water will help the sauce stick. We finished it with grated Parmesan cheese.
This was good with spaghetti, but I think a short pasta, or even a cheese ravioli might work better. Ratchet up the amount of sauce and it might even work well in a lasagna.
I served this with quickly sautéed kale and garlic.
Big Habibi loved it. Little Habibi threw some plain spaghetti on the floor with a flourish (we both sang, "I Whip my pasta back and forth" as he did it. Not what Willow Smith had in mind.). I will happily eat the leftovers, all of them, while home this week.
I wish I could take complete credit for taking a risk on this flavor combo, but I'll be honest. Once I saw this stuff and thought, "Pumpkin and pancetta. That sounds like it will be good," I googled it to see if it has been done before. I found two risottos, one by Jamie Oliver (you had me at hello, Jamie!) and one by Nigella Lawson. I didn't read the recipes, but it was nice to confirm that I probably wasn't crazy for putting these items together. I figure anytime those two agree on a flavor combo it must be good. At least this time I am right. And it was done faster than we could be home with takeout.
Posted by Alyssa at 4:43 PM
Wednesday, February 15, 2012
Before our little man was born, and before I knew he was a he, I had already started singing him a sweet song by one of my favorite singers, Ben Folds. It is called Gracie Girl, and he wrote it for his daughter. Once we found out our little guy was a, well, little guy, I amended the words to Baby G...those who know our last name know it fits pretty well. :-)
I recently dug back in the recesses of my mind looking for new lullabies to sing, and this one came up.
Oh, the tears, as I sang these words, at the same time so innocent and so hurtful:
You can't fool me I saw you when you came out
You got your mama's tastes but you got my mouth
And you will always have a part of me nobody else is ever gonna see Gracie Girl
With your cards to your chest walking' on your toes
What you got in the box? Only Gracie knows
I would never try to make you be anything you didn't really want to be, Gracie Girl
Life flies by in seconds
You're not a baby, Gracie, you're my friend
You'll be a lady soon, but until then...
You've gotta do what I say.
You nodded off in my arms watching TV
I won't move you an inch event though my arm's asleep
One day you're gonna want to go
Hope we taught you everything you need to know, Gracie Girl
And you will always have a part of me
Nobody else is ever gonna see but you and me
My little girl
My Gracie Girl
I think of the gravity of those words, and how true some of them are, and how patently untrue others are. I think of the part of me that only my son knows...the part that mourns the nursing that we never got quite right. The part that cried out in emotional agony as he pushed me away. The part that thought my son didn't love me because I couldn't give him what he needed. The part that thought I deserved his newborn non-love. I think ahead thirteen months or so to my sweet boy resting his head gently on my chest as I rocked him to sleep, obliterating every thought that he didn't love me, that he didn't know the comfort of a mother's heartbeat in his ear.
I think of myself trying to make him someone he isn't, trying to make him push just a little bit harder, hoping I can "fix" him, turn him into someone or something "acceptable." I imagine myself stealing HIS joy in an attempt to find my own joy for him.
I fast forward to a time when he wants to be independent, he wants to go. Unlike so many parents of the Cosby generation, who hope that their kids will leave the nest rather than mooch, we have a different deal. We have no guarantee of Sam ever "going," or more importantly, ever being able to go. We cannot make a promise to him that he will enjoy the independence that Gracie will be lucky enough to Experience. There is a greater likelihood that we cannot teach him everything he needs to know than that we can
This song, that brought me such joy before we met our precious boy, is now one that brings unspeakable pain for him. I want Ben Folds' promises to Gracie to be the same ones I make, and keep, to my son.
Posted by Alyssa at 8:58 PM
Tuesday, January 10, 2012
I've even in a bit of a slump lately. Sam seems close to meeting several milestones, but just can't put it all together yet. It is hard to watch him get farther behind even his peers with Down syndrome. I know a big part is that I'm so fixated on his gross motor skills, which are by far his biggest weakness, but is also the most obvious group of milestones in a kid who is Sam's age. People never ask you "can your kid find your nose?" or "does your Child eat broccoli like its ice cream?" or "how long did it take your baby to figure out activating his new Christmas toy?"
They ask you "is he walking?". No.
Standing independently? Nope.
Pulling to stand? Not really.
Crawling? Nyet. (yeah I've had to start learning to say No in other languages)
At 13 months he is starting to belly crawl and is getting closer every day to pushing to sit. It's...a lesson in avoiding mompetition.
This is a lesson I still need to learn. Read on:
A few days ago we went to lunch with friends who have a baby the same age as Sam (a 46er). She is at least on track with milestones, probably advanced in some areas (frankly I've lost track of the track). Her dad saw Sam drinking from a straw cup, and told her, "Watch and learn."
I'm truly not even that jazzed that he's "beating her" in straw cup skills. (Okay maybe just a smidge.). But I'm absolutely thrilled at the notion that, for the moment, he has something concrete to teach his typical peers.
He always will I think. Emotional intelligence is such a powerful thing. And that, I know, Sam has in spades.
Posted by Alyssa at 5:35 AM