Wednesday, July 18, 2007

I guess I am a "special needs momma"

I have a FAVORITE new blog. It is from "Special Needs Momma" who has a blog called Literary Momma. Her writing is amazing! Her words pour out onto the screen as if they were coming straight from my heart. She is not a Rett mom. She actually has a special needs son, Evan who was born very early; he was a twin - his sister died four days after birth.

Here is one of her posts.....

Over the years as Evan's mother, I have often wondered: if a typical mother's heart is strong, is the heart of a special needs mama even stronger?

Many of my friends who have children with special needs will testify to the profound need we sense for that child to be on this planet, teaching us about love. I have felt that with Evan, and I've seen that with others. These children show us how to open our hearts in ways we never knew were possible. Perhaps that makes our hearts stronger, braver, or kinder. Or perhaps our hearts are simply, by virtue of being open, wider and more expansive.
But inside this wider space we have discovered that amidst the love there is also the heartache, and within the heartache, the joy. The will to live and the will to love.~

I used to mourn the person my son was not: the boy who would talk and eat and see and run and call his friends by their names. He may still do those things some day, and more, but the progress is so slow I can no longer allow myself to think about those possibilities. And yet I wonder: what would I love about him then? Would I love his sense of humor? His voice? The songs he might sing? The facts that he fidgeted in his seat at school or told silly knock-knock jokes? Would I love the way he pushed my arm aside or argued with me, rather than accepting my help?
Instead of what I love now -- his ringing laugh, his beautiful smile, the way he swings his cane around like a weapon -- what would I love? If Evan were a typical boy, What about him would I love?
I'm not supposed to wonder who my son would be apart from his disabilities. I'm supposed to see him as a person with disabilities. I'm not supposed to think about who he might be or what I might love about him or how he might tell me he loves me.
But I do. I do because I love him and because he has taught me that inside a wide-open heart, loss is sometimes a part of love.

Lately I have been having some "low" moments, feeling like I can't do this, whatever "this" is. But I can say that I do feel as if I am learning what a mother's love is all about. I even feel as if my love for my own mother has grown. She has to hurt for her granddaughter AND her daughter. That has to be tough. My love for Brooklyn is so amazingly strong. I love her so much it actually physically hurts sometimes. I think Brooklyn, even at her young age of 2 has already began to teach MANY people (not just me) in her life how to love....what love truly is.


Samson James said...

Kel, that was amazing. Thank you so much for sharing. I know Brooklyn has touched our lives!

Susy said...

What a great post. Thanks. You're in my thoughts & prayers often!

Kristin said...

Kel, you are such a WONDERFUL mommy! I know we will all continue to learn LOTS from Brooklyn!