On 4th of July, three years ago, our little family of four picked up sandwiches and took them to a neighborhood park for an afternoon picnic. We left that park frantically in an ambulance, and our lives were forever changed. Blake stopped breathing (the first time) that day and our journey of living every parent’s worst nightmare began. Needless to say, we didn’t get to watch the fireworks we looked so forward to that night.
While Blake survived that day, the next four days that followed were somehow each more horrific than the day before. They led to life in an ICU, where we watched Blake’s blood get circulated and oxygenated outside of his body to give his heart and lungs a break. And led to 30 days in an unresponsive, sedated state on a ventilator where with each minute we desperately hoped we would see his eyes open and could hold him again.
Surrounded by love, positive energy and support, Blake made a miraculous recovery. As parents, we struggled with the management of a medically fragile toddler, but Blake continued to thrive as time went on.
Two years ago, 4th of July was an incredibly joyous celebration. We couldn’t wait to watch fireworks with our family and sit proudly with Blake on our laps. Each colorful explosion that lit up the night sky was seemingly a sign of victory and an overwhelming reminder of how far Blake had come from the year before.
We watched Blake continue to beat the odds that year. He grew to join the 100th percentile for height. His communication skills blew us away and his big, silly personality began to take shape. He advanced in ways we never thought possible, but unfortunately his condition did too.
Later that year, Blake suddenly stopped breathing again, leading to life back in the ICU and an emergent need for a lung transplant. We will never fully comprehend the unpredictable rollercoaster we were riding, but it came to an abrupt end on January 2, 2019. We lost our precious boy that day, and began a new chapter navigating profound loss.
We chose not to watch fireworks last year, as the pain was too great. Where the year prior it was a celebration of victory over his condition, this time it was an agonizing reminder that his disease had won.
4th of July will always bring conflicting emotions and a reminder of the intensity of our experiences… and this year marks another, but a high that has moved us beyond measure. Tonight it was Blake himself that lit up the sky with the beautiful display in Times Square, as unexpected fireworks soared above the city. Absolutely magical.
During this dark time in our country, Blake’s spirit still shines brighter than any firework, and his legacy of kindness continues to touch lives across the nation. You all have helped make this possible through the ripple effect of our collective good deeds.
Blake’s impact has continued to WOW us, and we are grateful that he lives on through this wonderful movement. Please help us keep it going; if it can reach Times Square, the sky’s the limit.