Today is World Down Syndrome Day. 3/21 –> Trisomy 21. Brilliant. And today I speak to those expecting a baby with Down Syndrome.
To those with a prenatal diagnosis of Down Syndrome, please don’t despair. I was in your shoes six months ago and made the choice to say yes- yes to having a baby with Down Syndrome and whatever that diagnosis may bring. I know what it is like to worry about what that means. I know what it is like to worry about each ultrasound and what news it may tell. I know what it is like to worry about stillbirth and loss. I understand the concern that comes with the idea of raising a special needs child. I know how it feels to wonder how your child will look and how she will be treated. I know how it feels to comprehend that the baby you are carrying might take years to potty train and may never move out of the house. I know the challenge of looking for day care able to accommodate a special needs child. I understand the concern that comes with the idea of raising a medically complicated child. I know how hard it is to navigate the new world of therapists, pediatrics and specialists, finding ones familiar with Down Syndrome. I know how it feels to wonder if your child will need to be delivered prematurely due to poor growth, will have bowel surgery as a newborn or need open heart surgery as an infant. I know what it is like to consider giving up your career and life how you pictured to care for your baby. These are all normal. And the good news is, not all these things will come true. Some might, but most are surmountable. Most babies with Down Syndrome live.
You will find yourself in a new community, surrounded by people who already have children with Down Syndrome and are eager to tell you how wonderful it is. They will support you in your worries and fears, your adjustment struggles and gladly give advice on how to navigate it all. This is club you may have never wanted to join, but you will likely be glad you did.
I tell you this because I am not so lucky to face these struggles. My baby was one of those with Down Syndrome who did not live. What I wouldn’t give to still be facing those worries, fears and stresses. With all that could be unexpected with a baby, I have learned that Down Syndrome is a welcome, livable one. You can have a warm body to hold, smiles to capture and personalities to get to know. I was ready to give up my career and lifestyle to have these opportunities. As I sit here with empty arms, I want you know that some people yearn for a child with Down Syndrome and might even be jealous of your situation.
We never know what the fate of our children will have. There are many unpredictable diseases and struggles our children may face- autism, cancer, mental illness – at least Down Syndrome is a known one; we know what the possible complications and struggles may be. I don’t pretend to know other’s circumstances and I don’t pretend that having a child with Down Syndrome, with or without medical issues, is an easy journey. Raising a child with Down Syndrome is a journey full of worry and wonder, of fear and joy, of anger and acceptance. This I know: Down Syndrome is not a death sentence. I chose to commit myself to raising a child with these issues but I was not fortunate enough to take that child home. I consider someone lucky if she goes home with a baby with Down Syndrome. May you be so lucky.
Clearly part of Mabel’s purpose was to allow you to offer these words to other families facing a Down Syndrome diagnosis. Her impact will be felt by many, which should be a comfort to you in time.
A wonderful perspective.
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Thank you for your post and your perspective. I admire your courage in sharing your story – it has impacted me deeply. I’m so so so sorry for your loss. Your story and Baby Mabel will forever have a place in my heart.
I clicked through to your blog from Roo’s post. My younger sister has down syndrome, the sister born before her died on my birthday (her 3rd birthday) and my sister in law just had a still birth. So much of what you write resonates. The desire to honour a lost sister/daughter, the struggle to have an individual with down syndrome recognised for something other than their extra chromosone, and how on earth to grieve. I wasn’t the mother for any of these three, so I can’t imagine how much more intense your grief (and my mom’s/sister in law’s) must be. Thank you for putting it so beautifully into words, and reminding me that even 21 years on my parents have an empty hole from the loss.
Thank you for your courage in writing this all down. Baby Mabel (beautiful name) is blessed to have you for a mother.
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