One year ago today, I found out Katelin had been approved for the NNZ study. One whole year’s gone by in a blink. As I look back on this day through the advantage of Time, I was right to be excited, on the edge of my seat, with my hands clasped between my knees, my legs bouncing in anticipating…waiting….checking my email every few minutes throughout the day, until…YES!! I KNEW, KNEW in the deepest part of my heart, that holds Hope sacred, locked in a Pandora’s box that this would change Katie’s life, my life, Life as I knew it, as I had learned it to be, and that YES was the key. And with a little turn to the left, out flew…Discouragement, Fear, Anger, Hopelessness, Tiredness, Dread and then there it was HOPE and it just spread its wings like the colors of dawn spreading across the golden plains of fruitfulness.
From that moment on, I knew goodness in the world beyond what I could dream, as stranger after stranger donated to get my girl to Texas, to give her a chance. I am indebted to people all over the globe, some I know, most I do not.
Since I sat there, all those days ago, four seasons have passed and it is Winter soon again. But for me, Winter will be known as the new Spring. Spring, when life is being reborn, renewed, when warmth and promise of bounty are around the corner. Even as I write this, the tears are falling. I remember that mom I was then, waiting to hear if my daughter was going to be given a chance to spit in face of Rett syndrome, whether I was going to get to cheer her on and yes, if I would get a glimpse of the child that was hidden from me for all these years.
I can recall the weight as I sat there looking at a screen that kept showing me “no new mail” and how each passing minute was piling up on my shoulders. And then, there it was, magically popped up on the screen. And I sat there and did nothing. I couldn’t open it, I didn’t dare, what if it was “no”? How could I bear it. The strain almost too much to bear. So, I sat there clinging to hope, holding it like the treasure it was, locked inside, afraid to open that email- what if it threw away the key beyond my reach? What if it was thrown into the deepest ocean of “NEVER”. I sometimes think, clicking on that email is one of the bravest things I’ve ever done.
I’ve done some things people would say were brave, but I can’t say it was bravery as I’ve not been afraid of the unknown. I joined the Navy, I’ve moved from one coast to the other with three children, I once went to Ireland on a whim with no plan-just got on a plane and went and trusted the buses I got on would take me to wonderful places, even though I didn’t ask where I was headed, what did it matter? I was in Ireland and that’s all that mattered. I’ve even white-water rafted, hang-glided and sky-dived. And while I will admit holding on to the plane for a split second before jumping, nothing ever scared me like clicking on that email.
I was right to care, this trial was and is the most monumental dream I have ever had. It has mattered the most of everything I have ever done (except loving my children and grandchildren), not just for Katie, but for all those other sweet girls and boys and their parents out there counting on a treatment, a cure. Katie was so brave, she faced it all so well, I don’t believe she ever doubted me and what she was helping to do. I was the coward, I was the one afraid, afraid of an email.
I often think how strange life can be, how people are connected in ways that matter, but that they will never know about. A few years from now, I truly believe, a little girl is going to be diagnosed with Rett syndrome. She’ll be just about 2, her parents will have watched her skills slip away. The doctor will be holding two pieces of paper in his hands. One will be the results, the other a prescription. One takes away all hope and the other gives it right back. And that little girl will grow up, go to school, go to sleepovers, date, be on the honor roll, live a long full, healthy life and all because years before parents allowed their children into studies, because thousands upon thousands donated to cure her, this child yet unborn. And her parents won’t have to be brave. And part of that will be because I opened an email.
So, even though some of you will have already read this, it’s the best way I know to say how truly fortunate I feel, not only for myself but for Katelin and what has been done for her.
I have heard the world is callous
That kindness is hard to find
That there is only room for “me”
In the common mind,
That Man has grown weary
Of his fellow man
And few will ever reach out
A willing helping hand;
And I know that there are those
Less fortunate than I
And they feel it’s true-
That fortune passes by
And does not turn its head
To ever look their way
And there is less hope in tomorrow
Than there was I yesterday.
Yet, I cannot be counted
With those who have lost hope
Or in the number made bitter
By an endless need to cope,
For my way has been lightened
By many a helping hand
And I feel blessed by Fortune
And my fellow man.