I can’t count the number of times I’ve been told to “watch and wait” since my son Alex was diagnosed with neurofibromatosis type 1 (NF1) at 4 months old in February 2013.
To all the other NF parents out there, my advice would be not to waste any time on things you cannot change. Instead, try to make the most of your time with your children because you may not have them forever.
When it comes to Alex, I have no idea what his future holds. Is he going to make it to adulthood? Is he going to have a good quality of life? Is he going to remain pain-free? I just don't know. But because I have running, I have perspective. It allows me to think about these things, but also put them to bed when I get home and just love my children.
