On Saturday, we attended the Cystic Fibrosis Foundation Cycle for Life in Santa Cruz. Mike cycled 25 miles in honor of our son, and we met the staff of the CF Foundation and some other CF patients. It was an interesting experience to say the least.
After Mike left the starting area, Alex decided he wanted to go for a ride. He walked over to our SUV and started knocking on the door, and when I opened it and picked him up, he pointed to his car seat and said "seat". He helped me buckle him in, and then he said "Go!". This may not sound like much for a two and a half year old, but two months ago, Alex had a vocabulary of about 4 words. He had great difficulty expressing what he wanted and he would just have a fit. Now I'd say his vocabulary is probably approaching 20 words, and he is as expressive as ever. He wanted to go for a ride in his car seat, and, in his own way, he told me. This was a huge accomplishment.
We went to meet Mike and the turn around point for his ride. It was what they called the "Strawberry Rest Stop" on Highway 1. When we got there I understood why. It was a farm house with strawberries painted on the outside. I'm not sure if it was a market during normal business hours because it was only 8:30AM, if it was, it was not open, yet. We waited for Mike to arrive at the rest stop which was stocked with water, peanut butter, energy bars, and Sizzle Sticks (red licorice). The migrant workers were working in the background, harvesting what looked like green onions. Mike eventually arrived at the rest stop. Although exhausted, he was doing pretty well. He took some snacks and liquids, said hello to Alex and I, and then headed back into Santa Cruz. After Alex and I made a quick stop and changed a diaper, we met Mike back at the Finish Line where lunch and drinks were waiting.
As usual, everyone at the event adored Alex. He even got a special invite to be a representative of Cystic Fibrosis patients at another CF Foundation event, Broc Glover's Breathe Easy Ride - Bay Area on October 1. We met two very special Cystic Fibrosis patients, Brett and Katie. Both had lung transplants earlier this year. As Brett put it, they traded in one set of problems, for another, but also a huge extension of their lives. The lung transplant will not cure Cystic Fibrosis, but the CF had done such great damage to their lungs through pneumonia and bronchitis type sickness that they would not have survived without it. I could not have had the conversations with these patients or other parents of CF patients one year ago. It was still just too scary to think about the future. I'm glad I was able to talk to them today. They were very inspirational and gave me great hope for the future of Cystic Fibrosis treatments.
The best advice I got, was something you hear every day, but we all tend to forget. "You can only take it one day at a time."
:) You are awesome, lady.
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