The Little Girl Who Loved Pink

This morning, I ran into someone I hadn't seen in a long time.

Ellie and I first met Harrison Moss nearly 5 years ago, in the fall of 2003, when Ellie was a newborn at one of her first well baby pediatrician appointments. One of the nurses opened our exam room door - safely closed for flu season - and ushered in a couple of strangers, saying, "Oh, you have to meet Harrison. She's the most beautiful little girl, and she looks just like Ellie." In fact, for the next few years, those nurses would refer to Ellie as "Little Harrison," as did her first teachers and therapists.

I've come to be honored by the comparison, deeply and honestly, but I didn't start out that way. Before Ellie was born, I wasn't sure how much I'd love her. After she was born, I loved her immediately, deeply and intensely. But I loved her as an individual and was very uncomfortable around others with Down syndrome. Soon my love and acceptance spread to encompass all babies with Down syndrome, then, as Ellie grew, little children her age. I now hold every child with Down syndrome I meet in my heart with aching and tenderness. I still have a hard time around adults with developmental disabilities, but I'm sure I'll continue to grow.

When I first met Harrison and her mom, Jill, I didn't see the similarity between the two girls. First of all, Harrison was so huge, almost a year-and-a-half older than Ellie. Do you remember what that's like, when toddlers seem like scary giants compared to your first newborn? And she was not well. Harrison was born with the same heart defect Ellie had, but hers was more complicated. Her stunning blue eyes, soft white-blond hair, delightful smile, and sweet, alert presence were overshadowed for me, that first time I met her, by her blue-tinged lips and fingernails, her pale skin, her slightly clubbed fingertips, all due to poor oxygenation from her struggling heart. That's what you think my perfect baby looks like? I thought.

Jill and I took our girls to a monthly play group for young children with Down syndrome at the school both girls attended, and I got to know Harrison a little bit more. I couldn't remember feeling the way I'd felt when I first met this amazing child; I was blown away by how accomplished, how funny, how sweet, and how beautiful she was.

Eventually, she had the successful surgery that fixed her heart, allowed her skin to turn pink and healthy. But she never recovered from the surgery, and she died in February, 18 months ago, only 4 years old.

I ran into Jill this morning, outside of Ellie's new school. Once again, Ellie is following in Harrison's footsteps. First we chose the same pediatrician, then the same daycare/preschool/therapy team, then, finally, the same pre-K. And Harrison's little sister is now a student at the same preschool.

She's a peer model in a special ed class, since her mom wanted to give back to the same system that helped Harrison, and to expose her youngest child to other kids like Harrison, the sister she barely got to know. But she's also the only girl in her class, and there are no students with Down syndrome, which is not exactly what her mom wanted.

It turns out that there's an opening in Ellie's class for a typically developing child a couple of of days a week. I can't imagine what it must feel like for Jill, seeing Ellie, a little girl with down syndrome and a repaired A/V canal defect, one people have called "little Harrison," running around healthy.

It makes my heart so full that it hurts, and I'm the mom of the little girl I can snuggle every day, the little girl who's so generous with her hugs and says, "I love you, Mommy" whenever she thinks I need to hear it. I'll never tire of hearing it. Every mommy should get to hear that from her children, every day of her entire life.