Perhaps the hardest aspect of chronic illness is the unknown. The trajectory is so varied and so personal that it’s impossible to predict what will be experienced by each child. Living with such uncertainty breaks everyone eventually. We all learn to ‘cope’ in our own little ways, or perhaps that’s what we make ourselves believe.
You very quickly realise there are no ‘routine hospital visits’, each appointment seems to raise new questions, new possibilities, a new illness to fear. An A4 list of higher probability medical conditions your child may contract are permanently etched in your memory. You are constantly looking for potential signs, trying to predict what the future may hold, hoping you can catch anything serious early, before it becomes life threatening.
Others spend their evenings relaxing, watching TV, you pour over journals, forums, websites trying to solve a puzzle, of which some pieces haven’t been given to you yet. It’s difficult for others to relate, they aren’t faced with the same challenges. A hospital appointment is rare, and when it does happen it normally means you go, you get fixed, you come home. Chronic illness isn’t so ‘well behaved’. It likes to lull you into a false sense of security before knocking you off your feet. All people really want to know is she’s thriving. Sadly that’s not an answer you can always give. Our responses tend to be more vague and filled with caveats.
Being a parent is tough, being a parent under these circumstances pushes you to breaking point. A lot do. Hospital wards open your eyes to the diverse range of ‘parenting’, children lying in beds alone, parents absent.
It breaks you apart having to put the most precious person in the world through torture you wouldn’t wish on anyone. The screams and crying you witness in those hospital rooms never really leave you. You smile and put on a ‘front’ however, sometimes the damage is inside. You celebrate the little things (eating, growing, etc), those things that everyone else takes for granted, because you never knew you’d get here.
P’s journey will never be easy, as one mountain is climbed the next appears on the horizon. They are the weighted cards she’s been dealt, yet she holds a number of Aces (beauty, intelligence, tenacity….). As she gets older her challenges and battles will stretch much further than medical issues, yet they will not stop her. She will break through barriers. Every time she is pushed, she’ll push back, harder. Those ‘small setbacks’ that make others crumble will only drive her on, make her tougher, more determined and fuel her fire. She was born fighting, and she sure as hell isn’t about to stop.
Chronic illness will not define P, she will.