Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.
Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is available for adoption to a religious Jewish family in the US.
Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.
I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.
What would I tell a new parent about raising a child with Down syndrome?
I know, it can feel overwhelming when you get the news. Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people. And now you’re the ‘other’ person. Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for. All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.
But I want to share with you a much more accurate perspective. It’s not sad. It’s not bad. It just is. Your child has been born with a medical difference, and that feels significant.
But it’s not nearly as significant as you might think. In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.
Here is what I think the most important things are to know in these early days:
- Raising a child with T21 is pretty much the same as raising any other child.
- He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be. No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
- Trust his potential and support his process in the way that is right for who he is, not who you think he should be. He doesn’t have to prove himself.
- Most importantly, just love him. You are going to get so much love back. One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.
I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21. I’d love to know what your reaction to this video is!
When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different. We presume that having differences is a bad thing.
It’s really not.
But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.
There are no mistakes in this world. Your child isn’t a mistake. His entrance into your family isn’t a mistake. You were divinely chosen to receive this child.
Not because you’re spiritually better than anyone else and ‘can handle it’. Not because you are worse than anyone and ‘he is your test’.
He is a child with unique gifts and abilities. He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!