Parenting a child with low functioning Down syndrome is tough.
I have two children with Down syndrome, and they are very different. Just six months apart in age, Polly (who is six) is counting, she knows her ABCs, talks a mile a minute, and is learning to read. Evangeline (adopted from Ukraine in 2009) is non-verbal. She signs more, bye, and sing. To many, she would be considered low functioning.
I hate to put kids in a box. I stay away from terms like “low functioning,” but sometimes in the quiet of the night, I find my heart thump louder and my eyes fill up, because Evangeline is not communicating with the world. She doesn’t interact with those around her. And it hurts.
This post is about Evangeline.
As her mom, I want more for her. I want her to enjoy people and places, and to learn and grow and develop.
But also, if I’m honest, I want more for me, and for my husband, and for Evangeline’s sisters. I want to know what she is thinking. I want her to look me in the eye and call me mama.
Sometimes it is difficult for parents in the special needs community when they don’t see their children doing the same things as other kids they know.
I live in that dichotomy every day with two children with Down syndrome under the same roof.
This morning, Evangeline came into my room while I was asleep and crawled up on the bed.
I love that she comes to me. When we first brought her home from Ukraine and a long time afterward, she wanted nothing to do with me. Now, she not only tolerates me. She seems to like me.
With a little prodding, I convinced her to crawl up next to me. She cuddled under the blankets, and although she didn’t want to hug me, she was with me.
I studied her beautiful crystal blue eyes. Her heart-shaped face. Her smooth golden hair. Her full ruby lips.
We’ve had her home for three years, and she is growing and developing. She puts blocks in a bucket, plays with toys, looks us in the eye, and leads us by the hand to show us what she wants. If Evangeline took a test today, she would probably score around a 9 to 12 month level in most areas although she is five years old. And I’m not going to pretend that doesn’t hurt, and that I don’t worry about her future, and my future caring for her.
But this morning, lying together in my bed for a few quiet moments, I sang “Jesus loves me,” she smiled at me fleetingly, scanned the room, then flicked her eyes back to meet mine.
This morning, she was enough.
My job is to help Evangeline meet her God-given potential. But I am not the judge of potential. What if this is her potential? To smile, and laugh, and feel safe and secure with us?
Of course, it’s hard to say. And I will continue to pray and seek out therapy and help in an effort to hear Evangeline’s thoughts spoken to me one day.
But this morning, thankfully, because I needed it, God reminded me.
Check out my friend Christie’s post Functioning to hear more on the subject. And if you are a blogger and have written about what functionality means to you, leave your link in the comments .