Five years since diagnosis. Jan 30 2014 was our version of 9/11. The day everything fell apart. The day all our hopes and dreams for our 16 month old baby boy were snatched. Cooper didn’t know any different, but all of the sudden, I was waking up with tears in my eyes, and they were different tears than those I had cried as I attempted to fall asleep the night before. It was a long, tough, painful, sad, scary time. The past five years have been a whirlwind of doctor appointments and infusions. Thankfully I have forgotten that feeling of despair. As we moved forward and found our way, we also found laughter and joy in our new normal, because Cooper is who he has always has been – a sweet, funny, loving, larger than life little boy. Cooper has taught me patience. To have faith. To let go. I’m learning that I’m not in charge of everything. Our journey continues as this summer rapidly approaches, with Cooper’s bi-lateral lower extremity reconstruction (fixing both hips, knees and ankles) surgery and it’s daunting 8 weeks in a spica cast (from his chest to his ankles) and recovery. Oh, by the way – the surgery is 1700 miles away from the place we call home. I’m turning the page to a new chapter of what Cooper will teach me. I can’t imagine what the next 5 years will bring, but I am ready, with an open heart. Show us the way, Cooper. We love you to the moon and back.
A glimpse of life 5 years ago