More than Disabled

“This is who she was always meant to be,” my mother told me after listening to me lament over the daughter I didn’t get. I wondered what would have Alisha been like if she had not been born with a viral infection contracted in utero that caused profuse brain damage leaving her severely, multiply impaired. My mom knew my heartache over Alisha’s deficits as she had the same heartache yet my mom also knew Alisha was still fully Alisha despite them.

About the same time I shared my sadness with my mom, I wrote this poem in my private journal …

Oh Lord for the words she cannot speak, let me cry out to you.

Oh Lord, for the lack of sound in her ear, let your voice ring through my own.

Oh Lord, for the places she cannot rise and walk to, lead my feet to make the gospel known.

For you are faithful, Oh Lord.

In a sense, I asked God to let me be her mouthpiece, her advocate. What I discovered on this journey of almost twenty-three years of being Alisha’s advocate and mom is that I have always been the one more disabled.  I was the one who needed to become more of who I was meant to be. Alisha hides behind nothing. There are no veneers. She has visibly been known since the day I held her close to my chest to welcome her into this world. The first few of hours of her birth I knew nothing of her future display of disabilities. I only knew a helpless baby, completely transparent, depending wholly on me for life.

That state of vulnerability at birth has always been what’s on display. It’s what allows her the freedom to be fully her.  Most of us have layer upon layer of protection and pride.  Alisha came without ever needing to be stripped of self-made layers like most of us.

I do think I have been her advocate but I think she has been my mouthpiece. Her soul, always out in the open for all to see, has spoken to me and for me. It has taught me the meaning of contentment and peace, humility and love. It’s expanded me as a mom, as a person.

Alisha makes friends with every person she meets. She quickly forgives those who have had to perform a blood draw, put her through rigorous physical therapy or brush her teeth, which she has an aversion to. She laughs freely, anywhere and has never demanded anything from anyone ever. Some might try to make the case that she is like this because her disabilities don’t allow her to stand up for herself. But I would argue that her disabilities are exactly what gives us the ability to witness an unselfish life.

Nothing has ever been able to stop her from being who she was made to be. For this I give thanks for the daughter I got. I aspire to be more like her.