Friday, September 30, 2011

The Big Tell

On Wednesday I was able to attend our DS group put on by ICDSP.  Unfortunately, we had to leave early, just as the discussion was starting to get good.  It was a pity too, as it was a topic that has a lot of emotion surrounding it.  The question was put forth "how do you tell people that your child has Down syndrome?"

We took the easy way out (in a way) when it came time to inform family and friends about Wyatt.  I did it en mass.  I did it just like you are reading here:  I blogged about it.  That's how this blog started actually, all you see here stemmed from "updates" that I wrote to my friends and family on Facebook.  I did it that way as that option was available to me;  the ability to reach as many loved ones, friends and colleagues all at once and to give them all the correct information about Wyatt's AVSD and (then probable, now confirmed) Down syndrome. Telling individual people has been harder.  Colleagues that I am not on Facebook with, people in the neighborhood... there will always be that moment of uncomfortableness.

It is just that:  uncomfortable.

For me, it was never feelings of embarrassment or failure.  The little psych nurse on my shoulder made sure of that.  Most of the time I felt bad, in a way, for the people I had to tell as I knew it would at best be awkward and worst it might "ruin their day".  Other days, on angry days, I would get irritated at the inevitable head tilt and the sympathetic sigh of "oh".

"The Big Tell" as it's known around here, is just another example of how much education, how much work there is to do in regards to Down syndrome.  It didn't seem to matter who we were telling, the answers seemed to have the same basic lack of understanding.  Sean works in a warehouse with a high immigrant, low education population.  Initially he got confused looks as a lot of people did not know what Down syndrome was.  The R word came up, people either didn't know what to say or launched immediately into a story about someone they knew or saw.  The stories didn't always end happy.

When I told friends and colleagues, I got a lot of wishful/hopeful thinking.  Initially it would be his appearance ("He doesn't look it" or "Are you sure he isn't mosaic?" or "Are you sure he has it?")  I would carefully explain that he was karyotyped at birth.  Then it would be "he must have a mild case" or "he looks like he will be high functioning".  Then I would explain that there is no such thing as a mild case... you have it or you don't and how the extra gene expresses itself seems to be totally random, like squirting paint at a canvas.  We don't know what challenges he will have until we get there.  We won't know if he will be able to walk or run or sing or play music or balance a checkbook. The conversation would get uncomfortable. Eventually I got tired of explaining and would just nod and smile.

It didn't seem to matter what the level of education (some of the above were physicians, nurses, therapists, social workers, you name it...), there was an overall knowledge deficit.  Even I was shocked to learn how many different body systems can be affected [read: all of them].  That little extra manifests itself in some strange ways, from itchy skin to different hand prints to heart defects. Even from our little random sampling in group, you can see the extra copy in action as this child has this particular problem and that one has none.

We were lucky as we knew a month ahead of time.  Many people that I have met (either in person or virtually) did not know.  Their Big Tell would be laced with more anger and surprise than mine was, I would imagine.  The anger is real too... why my kid?  I have seen many expectant mothers drinking, smoking and doing drugs.  These people go on to have healthy babies that they cannot care for... Why is my child affected?  Why me?

Each new mother's situation is different as well, the manifestation of their anger/grief is unique to them.  For me, I was jealous of other Moms with only one DS child.  It makes little sense now, but at the time, in those early days of the NICU when I was typing "Down syndrome" into  a lot of search engines, I would be jealous of DS Moms who only had one baby or had one at a time.  "Oh sure", I thought to myself, "your kid can be all they can be... you have the time", whereas I had to divide my time between two babies.   Those days are long past, but it is the truth.  Now, I go to group and I am almost apologetic to bring Zoe as I know that some of those Moms who have just had their first child, a singleton with DS, would give their eye teeth to be in our position. 

It hasn't been all sunshine and kittens over here.  In that month before they were born, I wrote, I went to appointments and I painted.  I tried to make something constructive out of the anger that came from Wyatt's diagnosis.  It was a band-aid at best, but what else could I do?  As well wishers would ask how I was doing, as those friendly hands would pat my belly, I felt like screaming at them. "How do you think I feel?  My unborn son has a hole in his heart! He probably has a chromosomal disorder! How am I supposed to feel right now?"  How could they ask such things, I wondered.  How could they not know?  It felt like a neon sign was hanging over my head, for all the world to see. Instead, I would smile at a clerk and take my change or say "Not long now!" to the Mommies at the bus stop in the morning.  Maybe it wasn't the healthiest thing to do, but it got me through.  I was like a size 20 bridesmaid in a size 14 dress.  I knew that if I exhaled only once, just a little bit, I would totally come apart at the seams and there would be no stuffing it all back in again.

That had improved a bit by the time they were born and in the NICU, but I still had my moments.  When I wasn't at the hospital with them, I was at home, either getting what sleep I could or trying to reach out through the internet.  That is a difficult process too, as there are only certain times that you are actually up to this sort of thing.  There were days where I would type "Down syndrome" as a search term and have my finger hover over the 'enter' key, unable to press it as tears filled my eyes.  Other times I would be fascinated at some obscure part of Trisomy 21 and the tears would come, seemingly out of nowhere. 

Time does heal most wounds and education eases the troubled mind.  Now that I am back to work, I am running into lots of people that I haven't seen in a while.  Most know about Wyatt but there are still a few here and there that don't.  It is still a bit awkward, but I think my positive approach eases things a bit.  That positivity would not exist if it weren't for the work I've done in the mean time.

I had a friend tell me that she had read one of my postings where I had gone to the wrong doctor's office.  She marveled at how well I was doing as she felt that she would have fallen apart right then.  I chuckled and replied "Well, you just have to keep laughing", which is true.  If that incident had happened a few months earlier, I would have had a different story to tell... I probably would have fallen apart.  But, I didn't.  I face palmed myself and got on with my day, like I do most of the time.  It's about perspective.

Perhaps if Wyatt had needed his surgery earlier, life would be totally different, but I don't think so.  We would have hit our stride a bit later maybe, but we'd still be here.  Again, it's all a matter of perspective.  Down syndrome is not the worst thing that could happen by far.  Instead of having one "normal" twin and one "sickly" twin, I have two reasonably healthy babies who are both special in their own right (as is their older brother).  In fact, it was Zoe, the "normal" twin who needed surgery and a hospital stay.  We are lucky to have him in an age where DS resources and understanding have never been better (although there is still a lot of work to do).

If I had any further advice to new or expecting DS parents it would be this:  It is not the end of the world.  Your little one will surprise and delight you daily.  Tell the people that you want to know about your child any way that you want to.  Other people may have issue with this, but that is their problem, not yours.  Educate yourself as much as you can. 

If I had to do it all over again, I probably would do the same thing.  Except, this time, I would have posted the following:

Dear Friends and Family,

Sean and I are thrilled to announce the birth of our twins, Wyatt and Zoe on February 16, 2011.  Although a little earlier than expected, Wyatt came into this world at 10:18 pm weighing 4 lbs, 13 oz.  Zoe followed him three minutes later, weighing 4lbs 1oz.  Both are healthy and happy.  As a precautionary measure, they will have to stay in the NICU for a while. Both have dark hair and brilliant blue eyes and Wyatt has Down syndrome.  We're not sure, but so far it seems that Zoe is the spitting image of me.

We will try and keep everyone updated as time allows.  Pictures to follow!

Down syndrome is as much a part of Wyatt as brown eyes are to Zoe.  It is just part of him.  It will affect a few things, how well he does in school, what he does with his life, but it will not change how much we love him or his siblings.  It is not something to be ashamed of, nor is it something to go overboard with in the other direction, either.  His life will involved scraped knees and hurt feelings, just like the other two.

His life has purpose.  He is loved and will love.  I can tell you that right now for free.

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