I believe that hearing your child has a rare, possibly fatal disease actually stops your heart for a second. It brings the expected tears to your eyes, and lump to your throat but it also makes it hard to breath.
Eventually though, the fear and confusion settle into the nooks and crannies of your soul and the diagnosis provides an unwavering clarity to the important things in life: family and friends who surround you with love; good health insurance; understanding employers; and compassionate doctors and nurses. Most importantly though each precious milestone and every new word, giggle, and smile becomes a significant moment that begs to be savored.
My son’s disease is called Langerhans cells histiocytosis (LCH), it’s so rare that it’s considered an “orphan” disease because it receives no government funding for research. I believe that using the term “orphan” for a disease that kills children is absurd and cruel. If more children were killed, would it make a difference? Would it raise the profile of his disease to make it worthwhile to fund? I believe I will never understand that kind of logic.
Through my son’s illness I have been indoctrinated into a small community of people that exists outside the average, every day world of healthy children. Although we are terrified of losing our children to an unpredictable, little researched, and capricious disease, we adapt and learn to celebrate victories big and small. We have “chemo-free” parties and celebrate days that are free from doctor’s visits, blood draws, and needle sticks. We create websites documenting the progress of our child’s treatment, and we check up on one another virtually because chances are, there isn’t another family affected for hundreds of miles. We rejoice when the doctors say there is no active disease, and we pray it never returns.
I believe that visiting the pediatric oncology ward is the most heart wrenching and humbling experience of my life. I am constantly in awe of the bravery of patients and the compassion of the staff. I believe that my son will be well and I hope that when that happens I don’t lose the ability to stop and take notice of the little things each day that make life worthwhile. I believe that one day I will breath easy again – this I must believe.
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