A year ago today, I became a "Group Owner" over on the Baby Center Down Syndrome Pregnancy Board. Basically, the board is for women who are either given a positive prenatal screen for Down syndrome (like I was), has markers for Down syndrome or have a child who will be born with Down syndrome as confirmed by and Amnio or CVS test. All of the women who are on the board have decided to proceed with their pregnancies. Statistics show that between 55-85% of women with a positive diagnosis of Down syndrome terminate their pregnancies. This board is for the ones who make the decision to bring their babies into the world.
It has been a wonderful year, and I've learned a lot - probably learned more than what I'm able to share, in many ways.
First, almost every woman who learns that they may have a child with Down syndrome is struck with the most horrible fear they have ever felt, or ever imagined feeling. I think this happens for a number of reasons. I think we are hardwired that as a mother, having something that you perceive to be "wrong" with your child to blame yourself. You have a feeling of fear, guilt, sadness, fear, uncertainly, self doubt, fear, anguish, terror, misery, and a desire to flee the situation.
Most of us also come face to face with a prejudice we never imagined that we had. And then we have some shame for ourselves, and hate the part of our self that could on some base level reject the child that most of us so wanted to have - just because they have Down syndrome. So then we have to deal emotionally with that raw feeling of self loathing for that prejudice.
There is also the intense concern over medical issues, the ones they know, and the ones they don't. Kids with Down syndrome have many more heart issues, and learning your child has one is overwhelming. The fear of putting a child through a (or several) surgeries is one that is perfectly reasonable. These moms learn so much on the board in terms of what this aspect of parenting will bring for them. The good news is that most children with Down syndrome do very very well with heart surgery. In fact, the medical community has learned many things that have extended the life span of our kids.
They fear for their marriage, they fear for their other children, they fear for themselves. They fear they can’t parent a child with “special needs.”
While many of the moms are dealing with all of the various intense emotions I described above, many are dealing with people who also put additional doubts in their minds. The Doctors some of the women have to deal with are horrible - they are prejudice, ill-informed, have their own agenda and do so much emotional harm to the women they deal with. Some family members also know how to say exactly the wrong thing to a mother. And then there are husbands who are sad, and confused, or rocks of strength who never show any self doubt.
Top all of that off with the cherry that is being completely hormonal due to pregnancy, and PHEW, it is an emotional situation.
That's why I admire the woman to find their way to our little corner of the world. They know themselves. They may be total wrecks, and full of fear and doubt. But they are brave. They are BRAVE. And they seek out the truth. And understanding.
We talk with them. We help them calm down. We tell them that they should try to be kind to themselves. We explain to them that the worst part of being a parent of a child with Down syndrome is the learning about it part. The parenting the child part is easy. The loving the child is easy. The therapy, the doctors appointments are generally, other than certain times - are manageable. We explain to them that the doctors they hear from know about Down syndrome from a text book they read years and years ago. They are as outdated as the (bad) advice they are giving. We tell them that no one knows what any child will be like, or what challenges they will have. We let them know they will still have a nice life, they will still go on vacation, they will have tea parties, and dance, and laugh, and play, and go out to dinner, and read, and be on the computer, and watch movies, and be normal, normal, normal.
And, yes, as a parent your life will be extraordinary to because of this extra chromosome. You will meet (wonderful) people you didn't know, you will learn things you didn't know, you will go places you wouldn't have, you will have your eyes open to ignorance and prejudice, and you will fight it. You'll have an extraordinary journey that you wouldn't trade for anything.
It is so hard when mom's get that diagnosis not to scream "YAY!! Good for you! You will learn that this life is a good one and this child is going to be so good for you! You are so lucky lucky lucky to be joining our club." Instead, we give them a virtual hug, let them ask question, give them support to feel the things they are feeling, and work through their emotions. We know they will get to the other side, where we are. I've seen so many moms go from being a total wreck to being totally in love.
One of the other co-owners on the board, Nancy, is so wonderful. I learn everyday new things from her about compassion, Down syndrome, hearts, parenting, and support and so much more. What a great resource she is to so many of us. Her little girl inspired me after Violette was born - I saw a picture of her with her sisters, in her bathing suit and the sweet and silly smile on that pretty little girls face let me see that I had a lot to look forward to with Violette. She is an amazing person, and one of those special people I talk about who I’ve gotten to know through Miss Violette.
In another post in the future I think I’ll write a “best practices for mama’s with a positive screen” post…this is getting so long now I’ll save it for another day.
I wish we didn't need to have this board. Really, I do. I wish everyone could hear the words “You baby has Down syndrome” and jump for joy, instead of this sadness. It is personally rewarding for me to be there, at times emotionally exhausting (there are times I feel like I'm reliving my initial emotions, and that can be hard), but so needed and I get so much out of doing it. These brave women need a shoulder to lean on, and they need someone who has been there, done that.
Our little corner of the world isn't a place many women of childbearing years want to end up. But once they find themselves there, I'm glad that little safe haven is in place for them and the beautiful, silly, smart, fun, happy little people who are going to be coming into their lives.