My 2 year old walked into the hospital room the day her baby sister was born. That same morning when we dropped her off at our friend’s house, she was just a baby. Within hours, she had grown to be a big girl. The excitement to meet her new baby sister reflected in her big smile and shinny eyes. She held hands with her best friend, Jennifer, a little girl with beautiful long brown hair…and Down syndrome.
I knew Jennifer well. I had watched her almost every day for a year while her mom, Kristin, worked part time. I knew Down syndrome in a personal way, and I loved Jennifer almost as much as if she was my own. I would have described Jennifer as a gift, and as perfect. I felt puzzled by the contradictory feelings I had over Jennifer diagnosis and my own baby’s diagnosis. How could I love Jennifer and accept her so easily, yet all I saw when I looked at my baby’s face was Down syndrome?
Ellie and Jennifer ran towards the bed, ready to take in the baby who was sleeping in my arms. Andy picked Ellie up and placed her by my side. Jennifer joined us for only a little bit, then Bill and Kristin took her for a short walk so we could have some family time.
“Yes sweetie” I responded. “But you have to be really careful and very gentle”
I placed Nichole on Ellie’s lap.
Their relationship will be so different from what I dreamed.
“Oh baby! Oh baby!” Ellie gently stroked Nichole’s face while she spoke to her and kissed her face.
“Jesus loves me this I know” Ellie sang, “For the Bible tells me so. Little ones to Him belong, they are weak but He is strong. Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so.”
Ellie, at only 2 years old, had speech above average. She could talk clearly and in full sentences.
How old will Nichole be when she can sing this song? How old will she be when she can speak like Ellie speaks now?
“Oh mommy!” Ellie said, “Nick-O is the most beautiful baby I ever saw. I love her so much, she is perfect.”
My love was not perfect. My love was being tested. My 2 year old, however, was showing me what unconditional love looked and felt like.
Maybe Nichole is perfect for our family. Maybe she will teach me how to love.
Bill, Kristin, and Jennifer returned. Ellie and Jennifer played in the closet and ran in the room while Andy and I talked to Bill and Kristin. They took turns holding Nichole and admired how beautiful and perfect she was. And we talked about Down syndrome. I confessed I knew Nichole had Down syndrome from the moment she was born because she reminded me so much of Jennifer.
We had shared with them that our baby might be born with Down syndrome when I was pregnant. It was easy to talk to them about it, they understood what was happening and more important, they knew how we were feeling. We talked about how to tell people that our baby had Down syndrome. That was a thought that kept coming to me, how do we tell people?
While they had no advice for us, it was meaningful to have someone to talk to about Down syndrome so openly. They reminded us we were not alone, they would walk this road with us. They had been our good friends when they walked into the room that night, but when they left, they had become like family.
It is Down syndrome awareness month, so I am sharing our story of finding out our daughter had Down syndrome and the first few weeks of her life. If you missed my last post, make sure you read: We belong together.
Next post: Mom, your grandbaby has down syndrome
If you just joined in, make sure to read the first post introducing you to this journey: The road less traveled.
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