Except nothing about Ella and our mother/daughter journey turned out to be typical. When she was diagnosed with CdLS my whole entire world shattered. Every dream I had for her, every ideal of our lives, every aspect of our future was suddenly put in jeopardy. The typical things every mother dreams of doing with her daughter and often takes for granted were suddenly and harshly ripped away from me. From the "small" dreams like talking about boys and shopping, to the bigger ones like walking her down the aisle someday or having her call me for her favorite recipe to make for her own family, I mourned the loss of those dreams sharply and painfully. Instead of wondering if she would talk to me about her crushes, I wondered if she would talk at all? Instead of being excited about sharing family recipes, I wondered if she would even be able to eat them or if she would need her NG tube the rest of her life? Instead of dreaming of helping her curl her hair before prom, I wondered if she would ever actually go to prom? The onslaught of realization of shattered dreams came daily at practically every turn in the road. Would she talk? Walk? Have friends? Live independently? Have a job? The uncertainties of Ella's life sprawled before me like a never ending desert. The things we would never do together slowly withered under the scorching sun. I felt parched-hopeless and lonely.
So the other day when JJ did something with Ella for the very first time that he probably thought nothing of, it had an entirely different effect on me. It ignited some deep emotions that I thought I had buried long ago. He did something that I, in 2 1/2 years of having a daughter have never done.
He painted her toes.
And I do say toes instead of toenails on purpose. See, Ella's toes are tiny. With the teensiest tiniest little nails you've ever seen. In fact, the only time her nails have ever been painted was by our sweetheart of a nurse when Ella was sick-sedated and intubated. So totally not fair.. :) I've never attempted this particular task because.. well.. her toes (and nails) are just so tiny. And I didn't think she would sit still. Or care. I guess it was one of those dreams that I hadn't even realized I had absentmindedly let die. Until now. One of those dreams that I let fade away, thinking it was perhaps one more thing we would never share together. Until I realized I was wrong. That Ella's life so far has been nothing like I feared it would be. That she is far more typical than not, that there are so many things we share as mother and daughter that I didn't realize we would be able to do.
So much of Ella's future is still uncertain to me. In fact.. sometimes I wonder if it actually makes it easier for me to deal with? Sometimes I wonder if I have really actually truly coped with Ella's diagnosis or if I just blanket myself under the uncertainty with a powerful concoction of hope and denial? Ella seems like such a sweet, typical little girl to me that it's hard for me to imagine what her life will be like down the road. The truth is? I really don't have a clue what Ella's future looks like. I have absolutely no idea if she'll be verbal or not. If she'll live independently or with us the rest of her life. I have no way of telling if she'll be able to hold down a job. Or shop for her own groceries. Or cook her own meals. I don't know if she'll be one of the ones who is able go to college and read and write.. or not. I don't know if she'll share my passion for photography or design or crafts or building things. I don't know if she'll be able to. I just don't know. So does not knowing these things make it easier for me to live day by day? Perhaps. Because I can still hope that she will do many of them? Maybe.
What I do know is this. Ella's life has surprised me almost daily. It has been full of ups and downs. Uncertainties. Heartaches, heartbreaks. From the things she has taught me, the people she has brought into my life, to the accomplishments she has made, the good in people that has been shown to me.. And I've learned that I don't have to have all the answers right now. I don't have to know exactly what she'll be like as an adult. Or exactly what she will or won't do. Because right now she is a funny, curious, silly, delightful two year old. And I only have to live this journey today. One day at a time. Not dwelling on the big things that I fear we may never do, but enjoying the small things that we can share together today. I don't have to be sure of what the future holds to be able to enjoy the beauty of today.
Like pretty pink toenails.