A child is a miracle. Every child is perfect is her own beautifully unique way. Children are not mistakes. They are not a parent's accomplishment. They living beings to be treasured and celebrated.
The wide array of emotions I felt after Ellie was born was astounding. I was failing about on a roller coaster of grief.
Three years ago, I woefully gazed upon my friend's little blond-haired, blue-eyed cherub who was born just weeks before my Ellie. Why? Why did she get two perfect little children when my one and only child has a syndrome?
Make this go away. This isn't fair.
Why me? Why us? Why my/our child?
This cannot be right! Come on! We were only going to have one child. I did everything right. At least I tried to be so very perfect. The model pregnant woman. I took my prenatal supplements. I took high levels of folic acid due to my Irish heritage to help prevent neural tube defects. I went to all of my prenatal appointments. I did prenatal yoga. I even did aqua aerobics with ladies as old as my grandmother. I tried to be perfect. I tried to do it all correctly. And I believed failed.
Why is my baby broken? What did I do wrong?
My cousin's child has sandal gap toes and she doesn't have Down syndrome. Those slanted eyes, well that could be because her little newborn face is smushed from the birthing process. Her muscle tone isn't that horrible. Right? Maybe this is all a bad dream. Maybe there is a mistake. I bet her karotype will come back with 46 chromosomes. I am certain it will. She cannot have special needs. I don't know how to raise a child with special needs.
As I looked into Ellie beautiful, chubby cheeked face, I felt love. Unbelievable, fierce, protective love. . . and sadness. Sadness because her life was going to be difficult. Sadness because I would never be a grandmother (selfish, I know). Sadness because she may be teased and made fun of. Sadness because Ellie may not be best friends with my friend's little girl as we had so cheerfully believed while J & I were pregnant together. Sadness because rather than having snuggle bonding time, we were bonding with a cardiologist and a geneticist.
All of these thoughts circled around in my mind during the first few months after Ellie's birth. I was extremely afraid to utter them out loud.
I was afraid that people would think I didn't love my daughter.
I kept most of those thoughts carefully bottled up . . . until now.
When life throws a curve ball, many of us go through the stages of grief and I went through each and every stage at full throttle and even repeated a few stages. I grieved for the child I thought I was going to have. The child that never existed. Yes, I also grieved for the difficulties that my little Ellie was/is going to face. The future is never certain, but I do know this: I have and will always always always love my little girl.
I do not regret having Ellie. What I do regret, is not celebrating her the way I should have after she was born. I want a do-over of the first few months of her life.
I am revealing all of this now, because I imagine that some of you are early on in this journey and are perhaps feeling some of these same feelings. Maybe feeling guilt. Maybe feeling alone. Maybe feeling anger. I am here to tell you that you are not alone. I have discovered through many of my friends who also have children with special needs that these feelings and thoughts are common. Normal. It is okay to grieve. It will get better. Celebrate your little boy or little girl, but do not feel obligated to celebrate Down syndrome.