The Pain in the Heart

I’ve hesitated to write this, but when I think of other mommas who might be out there thinking the same thing, I feel like I need to share this.

I have a very, very dear friend whose daughter is 2 months older than Rowenna. My friend is endlessly patient, kind, gentle. She constantly seeks to better understand and better support those around her, and for that reason I hope she understands what I’m going to write.

We recently attended her daughter’s second birthday party. Rowenna and her daughter were the only little ones there, so all eyes were on this pair of girls. (as is usually the case when adorable toddlers are around!) There’s something about a milestone that makes you take inventory of your own life, I think, so as we sat there and celebrated her beautiful daughter, my mind reeled at the vast differences between them.

There was a lot of  “Oh, I remember when the birthday girl was that age!” and “Just wait til she’s old enough to walk!” as Rowenna crawled with wild abandon around the party, being her lovable Rowenna self. Now to my friend’s credit, she never jumped in with an “Oh, she has Down syndrome!” in an attempt to explain my child and for that, I am grateful. It took a whole lot of willpower for me not to shout “she’s only 2 months older!” in the middle of this party. I was feeling simultaneously fiercely protective of my girl and crushed at the obvious differences between the two.

And I know people say things like that because it’s what you do, or because they’re trying to make small talk, or because they really just don’t see Down syndrome in my sweet girl. I know these things are said without malice or prejudice, but they still sting, even after almost 2 years.

But the hardest part was my own reaction to seeing my friend’s darling girl in action. I hated sitting there, choking back tears, as her clever girl picked up presents, identified various items, said thank you, and gave hugs. Walked. Talked. Asked questions. Asked for things. Identified needs.

I sat there and choked back tears, flashing forward 2 months to Rowenna’s second birthday. I know Rowenna will achieve all of these things, but her second birthday is going to look so very different than the party I just attended. A reminder how different my girl is right now and of the road ahead.

And perhaps this gets to the heart of one of the things I dislike about Down syndrome – the distance that is sometimes there, a distance when you really crave closeness. The awkward smile of a friend who looks from her child to yours. My own trembling smile. Simultaneously loving my own child and fighting the pain in my heart that some things just don’t come naturally to my child. Wanting to change nothing about Rowenna while wishing she could tell me when something hurts or something is fun. The distance I put between myself and one of my oldest, dearest friends in order to protect my heart.

I want my friend to know that I love her, and love her daughter. I am proud of her as a momma, and proud of her little girl as she grows into an ever more delightful sprite of a girl.

And I sincerely hope that days like these are fewer and fewer for me. I think they will be. And I hope I’m not the only mom feeling this way.