Life as it is
Lots of people who went through similar experiences told me you’ll never forget the day when you learnt about your child being diagnosed with Down syndrome…or other conditions that you simply not expected
or did not want to think about. It’s true, I still remember that day on May 4th in 2015 and the exact moment the doctor called (I was typing an email, I was wearing pink flats, burgundy – red jeans and a floral top on a very sunny May day). I remember precisely how I felt the world crumbling beneath my feet when the doctor who called to give me the results of my DNA test answered my question “I hope you’re calling with good news” with “Well…”. It’s the pain you feel when you experience the loss of a very loved one. Because that is what it is: the loss of the “picture-perfect” baby you had in your mind.
For us, the news came when I was 22 weeks pregnant and for months afterwards I thought I was pregnant with a diagnosis and not with our baby. The months that followed were full of feelings that went from rage to hope that everything is going to be alright (and back…and forth…and back…and forth). Luckily, we had the chance to meet our genetic counselor who was very supportive and beyond giving us the statistical picture of what to expect, she put us in touch with a wonderful community of parents and other children with Down syndrome. Thinking back, I think the fear we felt came from not knowing what to expect. In life you hardly ever know what to expect, but when you live in a world where people who are not born “perfect” are in many ways isolated, it is even harder to form the right expectations. While the unknown is still there, the fact that, since we learnt the news, we met so many other families and people with Down syndrome helped us in ways words cannot explain.
Today, Emma is almost 14 months and she is the perfect baby. She loves waiving bye-bye, clapping, crawling, eating blueberries, chasing her older sister around to get her attention, pulling people’s hair, crying when she does not get things she wants, delivering stinky poops, giving you wet kisses and many others. She does all that and many others. I can list as many things she does not do and other babies her age do. I am not blind, I see those and there are times when this bothers me. I would lie if I said I don’t have moments when I wished Emma did those things as well. But, then again I have the same feeling with my other daughter too . Elina is 3.5 years and in some areas she is more advanced and some other areas she takes her own time to learn certain things.
On a day to day basis life with Emma does mean there are some additional doctor appointments, therapies she undergoes, more planning but this is NO tragedy. We are fortunate to live in a place where the state provides so much in terms of therapy and I am beyond grateful for having this chance. Our life with Emma is a BLESSING. I don’t know how I can shout this loud enough. It is a blessing because she forced us to have a different perspective on everything we do and life in general. It’s all things that you know or you’ve heard (popular wisdom, I guess it’s called), but when you experience them you internalize and you feel them differently, more powerfully.
By far, the most important lesson Emma taught us is that life is what it is and it is PERFECT. Obviously, I don’t know what the future holds and the only thing I can do is to hope and pray for the best. I know life will not be easy for her growing up in a world where perfection has a narrow definition which, on many accounts, she does not fit.
But, I also know we – as her parents, family and friends – are there to recalibrate that definition and focus it on what matters: being and loving yourself and others for who they are and for trying to be your own best with your unique talents and aspirations. And, each of us has them.