To the woman who has just given birth to a baby with Down syndrome,
First, I want to say congratulations! Your baby is a baby like any other baby, and your baby is beautiful. I want to tell you that not very long ago I was in your same position.
I don't know how you're feeling, but I can tell you how I was feeling. I was smothering in a hospital room, surrounded by people but feeling deeply alone. Longing to be in love with my baby, but too consumed with fear to see her beauty, and hating myself for it. Weeping between visitors, and trying to hide my vulnerability when they would arrive. Putting on a happy face for them because I knew if one person displayed sympathy to me I would break. So desperately in need of rest but unable to sleep.
If that is you now, I want to tell you I am sorry. I am so incredibly sorry for the pain you are going through. I know its depths, its darkness, its suffocating power. I have been there and wondered if I would ever see the light of day again. I remember reading stories of other moms whose children were now older. They said they wouldn't change anything. They said they loved the new life that Down syndrome had brought them. I thought, "Good for them, but I can never be that person. I'm too type A, I'm not confident enough to get involved, I'm too self conscious, I'm too much of a worrier, I am too much of this or not enough of that. I have no idea how to be an advocate. I don't know where to begin. I am doomed to a life of stress and fear, of feeling like I'm settling for Down syndrome." I assumed those moms were either lying to themselves or lying to me. That perhaps they had convinced themselves they were happy, but deep down they knew that if they could take away Down syndrome they would.
And though it may be hard to hear right now, and you may not believe me yet, I need you to know that I was wrong. I was so wrong. And while I am so incredibly sorry for what you are feeling, I am not sorry that you have given birth to a child with Down syndrome. Because, while I know all too well the pain you are going through and I would never minimize it for a second, I am on the other side of it now. I can see that the pain I felt was God scrubbing away my rough edges. It all felt so horribly tragic while it was happening, but it all feels so beautiful now. I feel renewed, refreshed. I love my daughter more than words could ever explain, and she amazes me all the time. And I know that, though it's almost impossible for you to see now, you are going to feel the same.
So go ahead and grieve. Know that whatever you are feeling is OK. Don't beat yourself up for any thoughts you may be having. This is a shock, a traumatic experience, something you never wished for, and you may not be ready to celebrate. I understand. But please also remember my words. Please know that you will not always feel sad. You will not feel like you are settling forever, and your daily life will not be consumed with doubt or worry or fear or sadness like you may be imagining. You don't need to know all of the answers now. You will figure it out a little at a time. You will realize that what you think is a curse is indeed a blessing, and it will not take as long as you imagine to get there.
With so much love,