My daughter Little Miss’s medical difficulties began when she was approximately 4 months old. She quit gaining weight. Since then she’s had so many medical procedures I’ve lost count. Seizures, ICU, multiple abdominal surgeries, central line into her heart, etc. She is 10 now, goes to school, is fed through a g-tube, off seizure meds, currently doing well physically and emotionally. She goes to horse therapy (her favorite), speech therapy, and occupational therapy. She is cognitively delayed and has issues with both gross and fine motor skills. She’ll never tie her own shoes, for instance. Little Miss is an absolute delight! She is funny, loving, happy, bossy, and girlie. I love it all! With 3 older brothers there is lots of wrestling around here and she doesn’t hesitate to tell them when they have to stop. She expects them to obey her! She also has an older sister who doesn’t live at home anymore.
In the beginning of this health and wellness dilemma I thought we’d find a solution and then get on with “normal” life. So I didn’t keep track of what happened.
I wish I had always kept a diary. Now I do. As the number of specialists who cared for Little Miss increased, I had to write things down! So I buy a bright red diary at the beginning of each year. Pages have notes that include symptoms I’ve noticed, side effects of medications, improvements, colds, vomiting, doctors’ instructions, questions I have on the dates of future appointments. Some pages have tear stains on them as this life is not easy nor always happy. There are also LOTS of empty pages and I like that. Normal, or at least unremarkable days.
It is a wonderful tool! I can refer to the dairies rather than attempting to keep her medical records in my brain’s RAM. Reading some entries I think, YES! It really has been extra hard at times! And that engenders hope. Maybe the worst is over. Maybe not. But we have survived so much! The diaries affirm that my instincts have been good as well. I need that encouragement!
To further develop the diaries I’ve marked the pages with different colored tabs. Seizure dates are all marked in yellow. Medication start dates are marked in red. Surgeries are in blue, etc. I can track her history with little searching.
Hoping for the best kept me from taking notes initially. Keeping track of the past helps me be armed and aware in the present and for the future. I cannot fool myself into thinking it hasn’t been that bad, and I cannot fool myself into thinking it is impossible. Consider it for yourself – I am grateful for the notes I have made.
For encouragement that other parents have survived the parenting trauma of chronic complex needs, go to Finding Courage Through Sharing.