When you come home from two days of testing and consultations from the NIH with a positive outcome, you smile. Life is good. When your child wakes up the next day with new marks, you feel disenchanted. You feel like this cannot be happening (again).
You hope these new marks are just bug bites. You were just tested. You were just given a positive report. You send the pictures anyway and await symptoms or the onset of something else. You are in disbelief.
You shed a tear the next morning when the marks spread.
You start to worry more once the marks look like those you saw two years ago when lethargy and pain took over your daughter’s tiny legs.
You see the spread, you see the onset, you fear everything in front of you.
The village of support that surrounds you allows you to get through this hurdle, test appropriately, and inject as necessary.
You are scared and you are unsure of where this leads you.
Daily injections return to bring a sense of normalcy to an otherwise abnormal state of affairs.
You hope, you are grateful for all the doctors you have on standby, but you cannot help but feel … something words cannot truly describe.