No, I’m not talking about the movie! 🙂
As I reflect upon this last year, it’s been almost one full year since we returned from Texas, I wonder, “how can it be a whole year already?!” It still seems like yesterday. A blink. But, a year it’s been. And so, as I think about this year, I can’t help but be a little introspective.
Here we are on the brink. I imagine, as we all face the dawning of the New Year, every Rett parent is facing their own internal ponderings-will it work? Will it come too late? My daughter is old, should she get it now? Now, when all her life has been this way? What will THAT do? So many decisions facing all of us in our unique worlds. For me, it’s will she talk soon enough… soon enough to make a choice that will make all the difference.
And Neuren…. what can I say? They stand on the brink, too. Can you imagine? Being the people who save so many? I wonder if that brings the feeling of, “but we could’ve saved more” when the wheels of FDA approval seem to move so slowly. I hope not. I hope they know that those of us waiting, not just Rett parents, but Fragile X, Autism, Traumatic Brain Injury families, we’re just all so grateful for the Hope.
And as I’m writing this, I can hear the sound of ripping paper, as she’s decided that Christmas actually came last night and she should just go ahead and unwrap the presents under the tree (Angie, she LOVES the bubble machine). And that’s part of what makes it a wonderful life.
That in the midst of all the upheaval, all the troubles going on within our own little sphere and around the planet, the sound of ripping paper is making us both happy. Such a little thing, but… she can do it.
But, I digress.
It IS a wonderful life. Every day, the sun shines down on a planet that seems at war everywhere, but with just a little looking, you will see stranger reach out his hand to stranger; a bride will lay her bridal bouquet with others in Sydney, a silent show of solidarity to peace and goodness; a species is saved from extinction; a new species found; Pluto is once again a planet, WHEW! I struggled with that one; and a brave child wins the Nobel Peace Prize. Through social media, people reach out, find each other, support each other, make a difference. Half a world a way, someone knows the answer to a question that another person has, and shares it.
I know that there are people suffering all over the planet, but I also know there are people helping and hoping their suffering will end. Little by little, against the waves of what would wash away the goodness in the heart of Man, the shore is gaining ground, even if it’s just a grain here and there.
Every day, I am astounded, in some way by the hand of Nature, whether it’s the surprise of a warm day in December or hail in July or a rainbow. The smiles on the faces of my children and grandchildren warm my heart like nothing else, and a baby’s laughter will lighten my soul no matter how weary it is. In the end, I look at Life this way. I can count on one hand the things that challenge me and lie heavy on my shoulders; I can fill a notebook with the wonderful things that lighten my load.
So, to my friends and family, to the millions of all different creeds, colors, religions, nationalities, to Neuren… thank you for making this World such an amazing place, where the impossible becomes possible every day.
Katie and me, we have a wonderful life.