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Having a Child with Down Syndrome Part II: The Mourning

Copyright © 2009 Steve Hawley, All rights reserved.

Hindsight is truly 20/20. On October 30th 2002, roughly the 18th week or pregnancy, I was driving us to work and backed out of our driveway and into a car I didn’t see. I was addled. Evie appeared fine, but a pregnant woman in a car accident is always a concern. Evie had an ultrasound scheduled for the next day, but her OB/GYN brought her in for one that day. In the ultrasound, they spotted a kyphosis, or a hunching in her neck. They were somewhat concerned and scheduled a high res ultrasound at a hospital with better equipment. The second ultrasound concurred. Here’s the hindsight: it wasn’t kyphosis. It was a nuchal fold and didn’t realize it.

When Alice was born via C-section, the hospital staff went into ultraconcerned mode. Alice was having trouble breathing and needed a lot of care. Evie and I waited in her room and then a mob entered. It was the entire staff that had been in the surgery, all looking very worried. “We think your daughter has Down syndrome.” This was like being hit full force with a canoe paddle. Not that that has happened to me, but I’m sure it looked that way. After a pregnant pause, we both wept – the kind of weeping that comes with an internal keening that elicits a visceral desire for your mom.

Then the guilt and the mourning began. Why? Because we’re human. Both of us grew up as children of the 70’s and 80’s where hazing and humor at the expense of those with special needs was more or less accepted. It was a time when seeing a child with Down syndrome in a regular school was a rarity (there was a guy in my class in 7th grade who had two siblins (IIRC) with Down syndrome, but they weren’t in our school). We grew up with parents who, in their own ways, pushed us or encouraged us to be the best that we could be. We grew up with the highest expectations. They carried over into our work. We were both teaching at the same school and got feedback from the kids about how smart our child would be. All of those things and more come flooding into your mind when you get news like this.

Every parent, to a greater or lesser degree, has plans, hopes, and dreams for their newborn child. The quality and scope of these aspirations change over time as your child introduces him/herself to you. Sometimes the changes are fast, sometimes they’re glacial. We got all of that in the long empty space after the doctor passed on the news. There was some hope – maybe it was mosaicism when the trisomy occurs later in fetal development and affects some cells and not others. Grasping at straws.

Think about how many simple affirmations you might have:

  • My child will go to school/high school/college
  • My child will have friends
  • my child will get married
  • My child will be independent
  • My child will be great/aspire to greatness

And imagine feeling them torn away in an instant and again every time you look at your daughter in the NICU hooked up to a ventilator, O2 monitor, IV, and heart monitor. You wonder how much more you can bear as things pile up: seizure, stroke, atrial septal defect, pneumonia, secondary infection. Yikes. I think I got sent “Welcome to Holland” by four or five people, and it was on the wall outside the NICU. No offense to Ms. Kingsley, the author of that work, but I’ve grown to loathe it.

Then comes the quest for understanding, for a cause. This didn’t last long with me. I’ve had several conditions that have wrecked me in various ways and for which there has been no diagnosis. It’s easier for me to accept a “it just happens, that’s all” reason. In that realm, Down syndrome is the great equalizer. It is equally prevalent across all races and all cultures and all geographies. I think what it comes down to is that chromosomes are tiny, sticky molecules and sometimes, small sticky things stick to themselves.

The mourning passes over time. New dreams come into play. Old dreams come back. Alice is in our local school system. Alice does have friends. Alice most likely will be independent. Alice could get married. Alice will aspire to greatness in her own way.

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Having a Child with Down Syndrome Part I: The Weirdness

Copyright © 2009 Steve Hawley, All rights reserved.

When you get a new car, you often experience an odd change in perspective. You suddenly notice how many other cars there are on the road of the same make and model. When I drove a 1972 VW Super Beetle, I had it to the point where at a glance I could name the year of a beetle in a split second after seeing it. Freaky.

The same thing happens when you have a child with Down syndrome, but oddly different. We started noticing other families with members with DS, but started getting the oddly frequent happenings. When Alice was around 18 months old we took a vacation her E’s grandfather to return his parents ashes to France and to Switzerland. Nearly every day for 4 days running, we pretty much bumped into another family with a child with DS or some other coincidence. I was calming Alice down in the stroller in a small courtyard and ended up in a conversation with a couple. The man’s dad was a leading doctor at a clinic for children with DS.

As an aside, many thanks to my high school French teacher, Geri Desapio, who made the ensuing conversations possible, although I never learned the word for diaper in French, and couldn’t believe that I had to ask, “Excusez-moi, mais ou se trouve l’ecreme foufoune?” (excuse me, but where is the butt cream?).

For other parents, we have learned there is a “ah, you’re in the secret club” look. A slight nod of recognition. Sometimes it’s a short conversation – I saw a young man with DS wearing a Bruins shirt in a restaurant with his dad. I thought he had been to the semi annual fund raiser the MDSC does wherein retired Boston Bruins play hockey against a team of MDSC All Stars. This was not the case but his dad finished the conversation with “hear my words now, and believe them in 20 years – this is the most rewarding thing you’ll ever do”.

A month back, I went to visit my mom and on the way back, I pulled into a rest area – I nearly didn’t – it was a “do I really*need* a bathroom break and dinner?” dilemma. At the last minute I chose to. I saw a 25ish man with DS walking with his dad. The young man wasn’t high functioning. I saw a look of utter dedication on his father’s face, one I had seen on my own. I pulled out my phone and pulled up a picture of Alice and told him just that. He didn’t speak English. Oops. I don’t speak Spanish. Oops. He grabbed a coworker who acted as a translator. Thank yous on both sides.

This is not the strange part. Often times, I will take Alice out on “dates”. It’s a way to spend some quiet quality time with her. I usually have another purpose: errand, shopping, etc, but we will spend time together and do something special. Under these circumstances, I’ve had people – strangers – come up to me and say really odd things. One of the ones that stands out is a man who walked by us in the food court of the mall and said, “God bless you for all the hard work you do” and walked on with nary another word. How truly odd. And that wasn’t the oddest.

The coincidences go on and on.

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