After a few days in the NICU, we finally were able to come home. The doctors said it could take up to two weeks for the genetic tests to be verified. Friends and family surrounded us during this time. Noah seemed so typical just like his older three siblings. He nursed, he cried, he cooed. Inside each of us were going through worst case scenarios in our heads. Mom, Gram and I would sit on the front porch at the farm and watch the kids play as we took turns holding our baby. That’s what he was our baby. If I wasn’t breastfeeding him there were seven others waiting to hold him.
Things I remember during the wait; searching the car for change to buy a bottle of Boones’s Farm to drink at sunset with Mom and Kate. Getting cable tv after years without, why? I don’t know it just seemed necessary. Our church bringing meals, as a celebration or condolence? If that period had a color it would be gray with swathes of pink hues.
Finally, the call came from our pediatrician that Noah did have Trisomy 21. I was in my bedroom when I took the call. Since I was the one to hear it first, I was also the one who would have to tell everyone. Joe was out by the fence overlooking the pasture, I came up beside him and put my arm around him. He looked at me and said, “Well, we will win a lot of Special Olympic fishing tournaments I suppose.” That was it, no tears, no hesitation, just a humble acceptance.
I took my Grandma Kate out on the porch swing and told her. Gram had a massive stroke in her fifties. Her right side was paralyzed and she was mostly nonverbal. As I told her about her great grandson’s determination, she hugged me with her one arm and repeated one word over and over, good, good, good.
My mom and I were in somewhat of a denial phase. We read all we could about Down Syndrome and determined that IF Noah had Down Syndrome (this was after the testing) he had Mosaicism where only some of his chromosomes were affected. We of course, had good genes and this couldn’t possibly be our fate. Mom even went so far as to tell the Geneticist the testing was erroneous and we would like another one!
Zoe, the oldest, the caretaker was determined that she would step in and mother Noah. Marley fretted and worried about his little brother and became super protective of him. Sixteen years later they are still the best of friends. Little Malia, the twinsie, just loved her sibling. My niece Renee who lived on the farm, would get off the bus each day and proclaim him the most perfect cousin.
Life limped along but I was angry at God my fist was clenched to him. I had a failed first marriage, a son with juvenile diabetes and now another son with a disability? Everyday I woke up with a hard stone of anger in my stomach. All that I knew of God was being tested. Believers who were trying to comfort often said the most hurtful things. Joe and the kids seemed impervious to all of this. They joyfully, and lovingly adored our baby.
My older children say that I was different before the birth of Noah that after the diagnosis, I lost a lot of my carefree, happy ways. I of course beat myself up. Maybe I was too old to have another baby? Maybe I got exposed to something I shouldn’t have? Why me God? I have had enough hardship. Then one day in November of ‘06 it was gone. The hardness, the accusing of God’s goodness. I was flooded by the beauty of a different way of life. I’ve always zigged while others zagged, often out of step with those around me. Who better than our family to love, raise, nurture and adore this gift?
My family and close friends will tell you throughout my pregnancy I talked about Down Syndrome often. When we found out I was going to have a baby, my mom said I prefaced the announcement with a reference to loving and accepting the Lord’s will, regardless. I got up from the table at 28 weeks when they wanted to do the amnio….I was being prepared, it just took me a few months to catch up to what my body and mind had been trying so hard to tell me.