When did you first "see" Down syndrome in your child?
At birth? Did you know before your child was born that he or she had Ds? Did it happen a few weeks or months later?
Soon after John Michael was born and taken away to the NICU, Doug and I were told that it looked like he had Down syndrome.
As if the news itself wasn't like being hit in the stomach with a bat and my heart pierced with an arrow, we wondered, "How can they tell? What do they see?" What physical features were obvious to them that we didn't see?
I found myself picking apart John Michael body part by body part, looking for Down syndrome in his ears, his eyes, the bridge of his nose, the shape of his head and neck. I could see he had short fingers and chubby, square hands, and short toes with a sandal gap and Simeon crease underneath. I noticed he didn't cry vigorously and was rather flaccid. Internally, the doctors told us about the 3 holes in his heart (PDAs) that may or may not close on their own. This, they said, was also a marker of Down syndrome.
It was all so much to take in.
We looked, we stared, we parsed him into "parts" and rationalized away the similarities.
To us, John Michael didn't look any different than any of our 3 older children. He was ours. We loved him.
In all honesty, the next couple weeks were fraught with sadness and fear. Every pre-conceived notion I'd had about Down syndrome popped into my head. Even the word "Mongoloid" came from the depths of my soul. I hadn't heard the word in at least 30 years, and yet it surfaced. I didn't know what it meant, I only knew that people used to say that for Ds. My thoughts turned to a deep sadness predicting that at age 80, we would still have a 40 year old son living with us. We'd never have our dream of traveling after raising our children. We'd always be "burdened" by having a child living with us... an adult child that would need our constant care and supervision.
Those early weeks, I pleaded with God to please take away the Down syndrome. I prayed for a miracle. I prayed hard. I apologized to God for being angry and not being positive during the early months of my pregnancy when I was still in shock that I'd have a baby at 40.
I tried to bargain with God, but no matter how hard I begged, John Michael didn't change. But God did give me a miracle. He changed me.
And I thank God to this day for that gift. A change of heart. Not long after, I was able to see John Michael as a gift to me, to our family, to our community. I still see it every day. That's what I see, not a diagnosis, but a blessing.
I can say now that when I look back at photos of John Michael as a baby, I can "see" his Down syndrome. I really didn't see it then. I often wondered if strangers in the store could "see" it. Sometimes I felt compelled to point it out. Strange, the things we do when we aren't yet comfortable in our own skin or in the skin our child is given. Today, I can boldly say, "Yes, he has Down syndrome, and he's an awesome little guy!" And I mean every bit of it. I can "see" it, but it really doesn't mean anything... John Michael is so much like the rest of my kids, and I pray that the rest of the world won't judge him based on his appearance. If they let him, John Michael will shine for all the world to see that Ds isn't something to fear. It's just a little part of what makes him unique, and I thank God for him every day.
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