Guest post by Wendy Wagler Schindler
The outside world just doesn’t get it sometimes. Even when close family and friends are sympathetic, they can’t completely comprehend our journey. Since our daughter’s Crohn’s diagnosis, I have been journaling how I spend my time. I want to share with my friends why I haven't been available, but don't want it to sound like a sob story as I'm not trying to solicit sympathy. I know that parents in similar situations are the only ones with real insight into this way of life.
This is how I have been spending my time:
- Focusing on parenting without indulging the sick child or neglecting the others. How many toys should she get for every blood draw, painful shot, sample produced etc.? Are my other children feeling ignored? Should food treats be withheld from them since their sick sibling can’t have them?
- Administering medicine. Drug companies don’t make the medications we need in a child’s dose. Her medications must be crushed and mixed, and we must remember the three different prescriptions she is on plus all the supplements! Liquid contrast prep for scans as well, we have forgotten and miscommunicated too many times
- Questioning pain management, listening on the monitor to her moans as she is unable to sleep. Waiting for the nightmares that she can’t seem to get rid of.
- Collecting stool samples whenever they happen - in port-a-potties, public restrooms, etc. Delivering difficult to retrieve samples only to be told by lab that orders aren’t there. Frantic phone calls to Dr. for a new fax to lab. Just getting voicemail. Waiting for the lab to receive new fax so we don’t have to return.
- Monitoring liquid intake to prevent dehydration and kidney problems. Closely watching sick child’s weight to make sure she is maintaining. Fearing the normal permanent stunted growth that results from Crohn’s, cringing as she is compared to her twin that is over 2 inches taller.
- Traveling back and forth to pharmacy, calling ahead to order, picking up half orders, arguing with staff who forgot to order
- Seeking out parental support groups, Facebook pages, reading horror stories and walking away from the computer for a break
- Negotiating payments, insurance coverage, applying for financial assistance for each different area - specialists, labs, hospital facilities, nutritionists, anesthesiologists,
- Filling out or deleting the many requests for survey feedback for every medical professional and facility.
- Finding child care for other children while sick child is at the doctor/hospital.
- Reading, reading, and reading some more about Crohn’s and the SPC Specific Carbohydrate Diet, symptoms, surgeries, supplements, medications and certain treatments. Ordering, waiting for and picking up new books from the library.
- Having numerous conversations with medical personnel and family about whether to withhold food completely and tube feed, medicine choices, and/or attempting a highly strict diet.
- Stressing about medical costs, new food expenses, contacting the many different providers to schedule payment plans; Reviewing finances over and over to see what we can cut out.
- Grieving over what we may face over sick child’s lifetime, fuming when we can’t get a response from the medical professional when we need it, considering all the things in life my child will never be able to do.
- Trying not to freak out over any changes I think I see in my child.
- Practicing self care - rest, reading, exercise, acupuncture, massage, outdoor time, hot showers, happy light, omitting normal activities to keep from the stress of traveling and having to load up and unload the family; Removing as many demands from my plate as possible.
- Logging on to medical portals to review doctor’s notes, waiting for responses, trying to remember passwords and user names for each place.
- Shopping for and preparing foods from all new stores in a whole new way for a minimum of 8 hours a week, according to our nutritionist, 3 hours a day in my experience. Failing at new way of cooking, trying again. Searching out, studying and printing recipes online for hours at a time. Homemade yogurt, nut butters, nut flours, homemade breads. Facing that I will never get a break from preparing sick child’s specific food from scratch. Not one meal. Ever.
- Because the sick child is so unusually young and her illness so severe, multiple children's hospitals want to conduct research using her information. Thus, I get to fill out forms, make phone calls, schedule and complete bloodwork for all family members. Five year olds scream loudly at blood draws.
- Watching Craigslist/online for needed cooking supplies and cookbooks as well as Crohn’s disease books - yay, found the yogurt maker, learning to use new food processor and rotisserie.
- Communicating with family members as they share their fears and grief, trying to console others when I want to be consoled.
- Calling and waiting, then calling back to get pre-authorization or results for each new test, procedure, scan or image.
- Wondering if someday I will have to homeschool sick child, communicating with school staff over and over to explain what sick child can and cannot have for snacks and treats teachers want to provide.
- Petitioning for insurance coverage to cover specific inflammation marker tests, being denied, downloading sample letters to fit to situation to beg insurance to cover tests.
- Dealing with labs who accidentally perform wrong tests, having to re-submit samples all over again.
- Studying over and over again the ingredients listed on every item sick child eats, researching online to see unusual things are illegal or legal for diet.
- Praying, praying, and praying some more - altar team, healing rooms, prayer chains, needing clarity and direction on treatments as well as a miracle of healing.
- Thanking God over and over that sick child was diagnosed quickly, that she is doing so much better than others, that our doctor recommends and understands treatment through diet, for the medications and health insurance that are currently available to us, that we live in an area where we have amazing pediatric gastroenterologists, for understanding parents on Facebook support groups, and that I am able to be home to care for sick child and cook all day.
I am grateful for every day my daughter is not in the hospital, facing surgery and can laugh, smile and dance!