The “diagnosis story” is one I ask of all my patients….to see how it may have energetically and emotionally impacted the child, but mostly to hold space for mom and help validate her experience.
Oh the stories I have heard…….heartbreaking, infuriating…horrifying at how callous, uneducated, uniformed and just plain disrespectful. Mothers telling their doctors “under no circumstances will we abort” and are pressured EVERY.SINLGE.VISIT… “it’s not to late to change your mind…”
“your child will never walk or talk” “your child will be a burden on you and your family” “your child will never be able to do anything…”
And even if that WAS the truth- if a family decides to ‘take that on” then you RESPECT and SUPPORT their decision.
We did not have that experience…ours was a bit different.
The markers for Down syndrome on the one ultrasound I had were missed. To be honest, for that I am thankful.
The first person to suggest Connor had Down syndrome was our midwife, one who had not made it to his birth. It was about 11 days after his birth and we were there for a check on me and Connor. The whole appointment was very fishy- and my intuition was trying to tell me something was off. She took one look and said ” You are going to hate me forever, but I think he has Down syndrome”.
I said, “WHAT? Are you joking?”/
She said no, and you are going to hate me forever, but I think he does. You don’t need to test him, you can just take him home and love him”.
(Which would have been disastrous considering he had both a form of pre-leukemia as well as a major hear defect.)
We we not given a lost of things he would not be able to do, maybe it was implied, maybe that was my own stereotypes and prejudices….I would wrestle with those later…I was just in shock and thought the midwife was crazy.
What I WISH, looking back, was that this was not made about HER “you are going to HATE ME forever”….. there is no hate. That is ridiculous. But what would have been supportive is ” you have a beautiful child. Look how strong and healthy he is!! He is gorgeous! He is going to have an awesome life. I think he may have something extra…. he has some markers for Down syndrome. Let’s talk about getting him evaluated. He’ll be able to accomplish so much and have an amazing life, just like every other child…anything awful you have heard about having a child with Ds is bullshit…” SOMETHING along those lines. Maybe it would have softened the blow, maybe it wouldn’t- I had to go through my own process, face my own demons around that.
I can tell you, almost universally the biggest regret those of us with a child how has Down syndrome has, is that we grieved the diagnosis. So many of us thought it was the end of the world. A big part o that is what we have been exposed to culturally about Down syndrome. But when one’s own medical team is pressuring abortion…..how can you not grieve?
I wish i could go back and tell myself “don’t be sad- this is literally going to be one of the most amazing, transformative, expansive, heart opening things that may ever happen to you. You are going to experience love, acceptance understanding and joy like you haver have. You are going to become part of a community that will becomes so dear to your heart…you may not see it just now, but this will be THE BEST.”
That is why so many of share- to teach all of us, that these lives are precious, and NO ONE knows the future.