Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time.
If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile.
I am done being told what to believe, what to be afraid of, who to trust, what to think and who to hate.
Why is RDEB medically fragile? Mostly because of the open wounds and the consequences of having non-healing 2nd degree burn-like wounds, which can vary and can be extremely damaging, even lethal. The skin, after all, is the largest organ of the body and it affects everything he does.
I realize that even people we know and love struggle to fully comprehend what Nicky’s medical fragility truly means.
I regularly receive well-intentioned questions about whether Nicky will ever get better. The short answer is no. RDEB is degenerative, which means it gets worse with age.
