Once André and I were told that the Down syndrome diagnosis was confirmed we were kind of left in a spin. Are we ready to tell everyone? Who would we tell first? What do we even tell them?
I think the last question hit the hardest, we would obviously tell them Stephan was diagnosed at birth with Down syndrome, that he had two holes in is heart that would need to be repaired in the next year, and that he would need a lot of therapy and intervention right away to help him live a normal life. But then the other questions would start.
Would you send him to a special school? Do you need to completely change your home into a special needs home now? Why didn’t you do all the tests before hand? Would you have “opted out” (yes those were their exact words) had you known sooner? Did you do anything wrong during your pregnancy? How old are you again? Are you coping with all of it?
The truth is, no, we were not coping with all of it. André and I had no idea what Stephan’s needs would be, we had no idea if he could hear us, we had no idea if he could see us. We had no idea what his muscle tone was like or how much help he would need to live a normal life. We had no idea about what school he would attend, and no idea if our pregnancy had anything to do with it. We were as in the dark about this diagnosis as anyone else, but we were expected to be experts on the matter in a few days otherwise we were bad parents for not knowing all these answers. It was horrific.
Over the next few days, I started gathering reading material, I compiled all of it in a neat little folder on my desktop and I felt guilty every single day for not getting to reading it.
It was then when André and I decided to live without labels until we fully understood what our sons needs would be. Right now, Stephan is just a baby, just like any other baby. He poops, he eats, he sleeps and all he needs right now is love and attention.
I still feel guilty when I can’t answer all the questions. I still talk to people who know more about my son’s diagnosis that I do, and it makes me feel like shit. But after it all I realise that I know my son, and who he is and what he needs. I can tell you all about that. I can talk for hours about how strong he is, how amazing he is. And I can answer any question about him. The rest will come in time.