“I bet you wish you’d stopped at seven huh?”
That was an actual sentence uttered in the staff room to me. A fellow colleague had heard me ask for prayer in the morning staff devotions, for my unborn child who wasn’t expected to live, and that was his offering to me. “Bet you wish…”
I stood stunned. which is good. If I had been able to speak I would have said something I’d later feel great about, but still have to apologize for. The problem is, what he said wasn’t far off of what I’d already heard coming from all over. The first ultrasound technicians reassuring hand on my thigh and an encouraging lilt to her voice “These babies rarely survive anyway” , My G.P’s pointed ” You have seven healthy children and lots of time to exercise your options” and the first visit with the obstetrician… “I’m so sorry.”
Apparently everyone had already written this kid off. I was clearly carrying something to be sorry about.
(For anyone already angry on my sons behalf. I changed family doctors, changed OB’s and even changed delivering hospitals. The first geneticist I spoke with at the new hospital said plainly “we honour all life here, how can we help make all this easier?” )
I was pretty angry about some of those words, but I’ve had a year and a half with my son now and all of those ugly, ignorant, well-meant but misplaced words have fallen away and I am left with the brilliant and awesome and encouraging. It’s those words and those people I’d rather write about.
For starters there were my midwives, who were gentle with their pronouncements and kept my “odds” (what a ridiculous system of unnecessary worry those are) to themselves for nearly eight months. (my odds were 4/5 BTW) and called this pregnancy ‘extraordinary’ but said it with hope and not apology.
Next there was Vicki. I can’t thank Vicki enough. When I told her what doctors suspected and how they were interested in doing more tests she said ever so eloquently “screw the tests, enjoy your pregnancy” and “your having a baby. It eats it sleeps it poops, don’t let anyone tell you different” Vicki has a grown daughter with DS and she rocks several flavours of awesome sauce.
My parents were amazing, they held me close when I first announced the test results, they prayed with incredible faithfulness and fervor for Thaniel’s life and health and they covered every gap caused by the extra involved with his pregnancy.
And then there were my children. My brilliant children who just loved and celebrated along with me. Who never complained about all of the visits I had to take to the hospital an hour and a half away, or how we had to cut back on a lot of stuff since I was on a partial leave from work, or how I missed my then youngest sons very first day of school, and then the next four weeks of school.. My children who fended for themselves (with my parents help) and who didn’t spend our time on the phone complaining about what I was missing, but instead they asked about their cute little brother.
I quickly became a single mother as Thaniel’s father couldn’t cope with his diagnosis and left… but in reality I have never ever felt like a single parent because of my incredible family. We are a village.
At work I am loved and supported. I was given extraordinary grace all throughout Thaniel’s pregnancy and ever after. My co-workers have baked and cooked and gifted until I’m humbled by them. I’ve had to miss weeks at a time and they pitch in and give up and rise every time. And they have never let on that it’s a hardship, even though I know it is.
What am I trying to say?
Maybe you just got the news. Maybe you went to the internet to read about this diagnosis and you stumbled upon this blog. (Please for the love of all that’s pink, stay AWAY from Wikipedia and google nonsense when it comes to your baby) If that’s you, if you are reeling and doctors are hinting, and family is `sorry-ing` and former friends are `tisk-tisking` let me give you this gift. It`s all I’ve got in the way of Down syndrome wisdom, because I’ve only been stumbling through this myself for the last year and a half.
You will get new friends, who are several shades of brilliant and they will quickly become very dear to you. You will be embraced by a community of parents unlike any other who will seem like family from the word go and will hold you up when you have little to go on. Your family, the good ones, will come together as you have never experienced before and this little miracle you are carrying will be without question the greatest thing you ever did, and you will call yourself lucky in no time. (If you cried when you heard, don’t feel bad… a lot of us did and as much as I regret it now .. as much as I wish I’d thrown a blue and yellow party instead, it`s alright to mourn the stuff you `thought` was important.) And all of those other people will fade away. They can’t take the awesome. They will disappear, shrink, cease to be important. I promise.
And on behalf of Thaniel and myself.. `congratulations!`
(it really is just a baby… eats, sleeps, poops. she was right)