Getting a Glimpse of the Emerald City

imageI woke today from a nightmare, that Katie had died. That she didn’t make it to when Trofinetide was available. I watched as she slipped away, Fox laying on her chest, going up and down and then he stopped. This nightmare is surely brought on by the loss of so many girls in so few days. But, I awoke to my girl still breathing, sleeping sweetly, not a care in the world. How lucky am I. There are so many others facing the exact opposite and our community is hurting for them all…

Three years ago today, Katelin and I landed in Texas for baseline testing to see if she qualified for the NNZ-2566 trial. Three years. Seems a lifetime ago. I am so grateful to everyone who made our trips possible. I can still bring to mind my basement full to brimming over with donated items for the yard sales and cried when a company donated the airline tickets and stunned at the outpouring of support from all over the world.

Having the benefit of  time to ruminate on all that has come to pass, when I was staring out the window as we landed in Houston full of hope, worry of not being accepted, yet terribly, terribly excited, I feel that this must have been how Dorothy, the Scarecrow, the Tin Man and the Lion felt stepping up to  the gates of the Emerald City. Here we were, Katelin and I, knocking on the gates… Would they let us in?? Would we get to glimpse the true wonder that lie within??? And, of course, you all know the answer to both mine and Dorothy’s questions. “Yes.”

And, we did see. Every day a new miracle presented itself. Oh, the true beauty of it all. It was splendor unrivaled. A circle drawn, a real sentence, sweat!, calmness, figuring out and vacuuming in all the right order, another real sentence, spelling a word, painting all by herself-choosing colors, pouring them, putting the tops back on. Such a splendid, colorful world. Day after day, wonder after wonder.

I know we are not the only ones who got a glimpse of the Emerald City. We surely passed each other as our heads were raised and going side to side in awe, so much to take in, knowing we were on borrowed time. And, I can’t help but be so thrilled for those getting to experience it now, during the pediatric trials.

Then, poof, back in Kansas, as it were, sent back to wait again until we can be at the gates. Almost seems like a dream at times, surreal. But it wasn’t a dream. Each day brings us all closer to the day we all see the Emerald City. However, we must grapple with our joy against the pain of knowing there were those so close, but will never make that trip. I hope that what they are seeing is so much greater than the Emerald City.

 

 

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This entry was posted in cure, hope, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Research, Rett Syndrome, Wizard of Oz. Bookmark the permalink.

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