Monday, October 4, 2010

The Beginning, Part 2

continued from HERE

This began our life I refer to as "After" or after learning that we would have a little girl with a developmental disability. Oh how I wish THIS SITE had existed back then. This is a brand new site dedicated to parents who have received a prenatal diagnosis of Ds & have elected to continue the pregnancy. Are you aware that more than 90% of pregnancies given a prenatal diagnosis of Ds end with termination? Fear and misinformation are prevalent, but many of us are working to change this.

The rest of the pregnancy was a blur. I had a fetal echocardiogram that ruled out large abnormalities in her heart, but not the 3 small findings that she was born with (which closed on their own). I practically lived in the doctor's office near the end because my amniotic fluid was so low (this is not necessarily Ds related). Weekly ultrasounds, twice weekly checks of her heartbeat, coming to terms with her diagnosis while the genetic counselors warnings that we had a 20-30% chance of our daughter being born, still (dying in-utero) weighed heavily on my shoulders.

I drank in the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, which had just been published. I adjusted, I cried, I found strength I didn't know I had, but I pushed my spiritual self off the bus and it would be a long time before I would have a heart-to-heart with God.

I called our local Ds group and talked at length (bawled-my-eyes-out) with the President. I even went to a Ds Mom's night out while still grieving the loss of the child we thought we were expecting, while hugely pregnant. I tried to learn all I could about Down syndrome from accurate sources. Mark wisely waited to tell me that our neighbor asked him why we weren't aborting (yes, I am serious). I tried to put all of the scary information out of my mind that our (awful) genetic counselor told us (shoved down our throats) while we "weighed our options." These were her words, not ours. For Mark and myself there were never options. There was just Sophia, and she was ours, exactly as she is.

1 comment:

Anonymous said...

I know she is yours just the way she is...but she is ours too. Although I do not get to physically see her (and the rest of your family) nearly enough...she has helped lead so many of us to a deeper understanding of the life of someone with a learning disability. You and your husband have handled everything that life has thrown at you with such grace. It is truly inspiring.

the prairie