I’d be lying if I didn’t say I never think of the future. But who doesn’t? I’d also be lying if I didn’t say that sometimes when I’m left alone with my thoughts my mind shifts towards those indefinite days and I feel a sense of dread in the unknown. But, then again, who doesn’t? Who doesn’t feel a sense of uneasiness when thinking about the unknown. I’m sure there are plenty of people much braver than I who don’t, but that’s just not the stuff I am made of.
What am I so afraid of in the future? A lot of things. I am afraid of the day Mia realizes she is different, if it hasn’t already happened. I am afraid of the conversation that will inevitably ensue when she finds the words to discuss this with me. I have been searching for these words since the day of her diagnosis and I have yet to find them. I am afraid of bullies and how she and I will handle them – alone and together. I am afraid of puberty and all that comes along with it. I am scared of the teenage days when kids her age jump in their first car and speed toward their future leaving Mia in the dust. I am terrified of the thought of a lonely Mia in her twenties when all others her age are in college, relationships, and embarking on new paths in their lives. I am terrified of Mia in her thirties when all of those in her family now have their own children, husbands, careers and homes of their own and there she will sit in a type of limbo. I am petrified of what will happen to my daughter after my death.
Although some of these are legitimate fears, it is still not fair for me to build walls around Mia’s future, encasing her in a life of desolation. It’s not fair for me to decide today what she will and will not be doing at particular times in the future. It’s entirely not fair for me to choose what feelings she will have in certain situations, the feelings she will have over certain truths, in the future; in her future. And that’s the thing, it is HER future. Not mine. As much as I want to play around with the “what if’s”, and “what will’s”, it really isn’t mine to play around with. It never was. How unfair it is of me to put limits (even if it is only in my mind) on a child who is going to have to face down the limits that countless people will place in her path every day for the remainder of her life.
I should know better than to do this anyway. It wasn’t so long ago when I would imagine Mia at age six and full of trepidation I could see just how far behind she had been left. The future I then envisaged doesn’t mirror in the slightest Mia’s days of today. So, you see, I am not a future teller. I am not psychic. I am not a soothsayer, and I should stop pretending to be.
I should focus on the joys of today.. I think I will…
Today, in school, Mia played “Simon Says” and completely followed the rules. Touching her nose, or stepping forward ONLY when “Simon said.” This is huge. This is the stuff I should think about. This is celebratory news.