Monday, January 10, 2011
I'm not sure if there is anything more nerve wracking then waiting for the phone call that will commence a live, on air radio interview. I was given a window of time during which they would call and a vague idea as to the questions that would be asked. Any organized person would have used that time to prepare, to go over the questions and determine the best possible answers. That was my intent, it truly was.....but did it happen? Not so much. Instead I paced the floor in nervous silence, praying that I wouldn't pass out or acquire a sudden case of the hiccoughs. I may have recited some daily affirmations a la Stuart Smalley with the hope that they would somehow inspire confidence and reduce the waver in my voice. When the phone finally rang, I think I jumped 3 feet in the air. Praying that no one could hear my heart, which was hammering its way out of my chest, I took a deep breath and began. After all, this isn't about me. It's about her. It's about my girl who has so much fight and spirit left but no means to win this battle. If I don't fight for her, who will? We've been dealing with the government for the last year trying to create a spark that will inspire change. For kids like Tatyanna, there is nothing. Parents are given a diagnosis and told home to go home, enjoy their precious babies and wait for an end that will come far too quickly. We were recently encouraged to seek out a referral to the local palliative care service. We were told that this was the best that could be done at this time. This just isn't good enough. It has to be better. There has to be more. Our attempts at creating policy change to open doors for new research have been futile thus far and so the tactic has changed. We've put it out there that we are hoping to return to China for a 3rd round of treatment since there is nothing available here in North America. We know that it's not a cure, that it will only buy us time. But, right now, time is the only thing I want. I'm just not ready to let go. The improvments we saw on the previous trips were phenomenal and I would love to try once more. Unfortunately that trip comes with a staggering $50,000 price tag and we are left wondering how to proceed. Prayer for wisdom would be very much appreciated! At a recent appointment with a metabolic specialist she made the comment, "I can't imagine parents doing more for their child than you two." This was interersting as I can’t imagine doing any less.