This Mother's Day our friend Katie shares her thoughts on life after ALS for her and her daughter, Grace.
This is my Grace.
Why is she “mine,” you might ask?
Well, because ALS took her dad from us in October 2016.
She was only eight years old when he was diagnosed. Eight. Only eight. Surely, if I keep repeating that fact, it will one day make sense to me…leave me without such a feeling of bewilderment. She was 11 when this disease stole him away from us.
With each passing year, I can’t help but wonder…what does she remember? What does she remember about her dad? Can she recall the sound of his voice? Can she bring his face to mind? Can she remember the feeling of riding on his shoulders? The way he used to rub the space above her eyebrows to get her to fall asleep? Their sock wars?
He lost his voice so quickly upon diagnosis; ALS is the sneakiest of thieves.
And it steals such treasured abilities as if it knows what it is you value most and schemes to take it away from you, the first chance that it gets.
Are eight years long enough to lock away the sound that represents the love of a parent so that it lasts the length of a lifetime? I don’t know. I haven’t yet asked my child these questions.
I think…what I CAN say…is that it was too soon. It’s ALWAYS too soon…whatever your age.
I cannot imagine the wonderings that will inhabit the psyche of my child as she ages…the holes this loss will punch through each mile marker, each significant moment, each accomplishment, and each new level of maturity.
I cannot help but wonder if she’ll experience each one as a fresh new wound, or if every passing year softens the blow…dilutes the pain…muddles the remembrance? I just don’t know.
What I DO know is this – she has witnessed more in her short 14 years of life than she ought to have. And she has done so with strength, and integrity, and unselfishness. I could not have asked for a better daughter. I am more than blessed to have her and know her to be the little person she is today.
Life is not fair.
It boggles my mind that there are people who inhabit the earth who have no concept of the idea that &%!@ happens and you have to deal. But it makes me proud to say that my child has only shown me her strength…her ability to rise above, along with her capacity to care, and love, and strive for excellence. I am sure that I do not deserve her. I pray that her strength will see her through all of life’s extreme challenges.
One day, there will no reason for us to wonder what an 8-year old will remember…or miss out on…because of ALS.
And that will be because you helped us to find a cure. Please, help us find a cure.