Tips For Parents With Chronically Ill Children
As an adult who survived childhood and teen years with two chronic disease (a complex heart defect and pulmonary hypertension) I decided to ask a few of my adult peers about growing up with a chronic illness and their families. I complied a list of tips for parents that we as adults thought our parent did right.
Treat us like every other child
A child with a chronic illness spends alot of their childhood wanting and wishing that they were like their healthy peers. Some statistics say that over 80% of children with chronic illness will face period of depression to varying degree.
Many of my peers said that the more normal home life is the better they dealt with their disability. Especially those peers that had healthy siblings. They said that if their parents treated them as more special or fragile that this caused them to have feeling of shame and distance from their parents but especially their siblings.
Take time for your healthy kids
I have noticed that some adults with chronic illness are not close to their siblings and many state that the way they grew up caused strained relationships. A lot of my peers have the feeling of guilt for being the one that is sick and needs the help and attention. On the other side there are the siblings who spent a good portion of their childhood being sent to someone else house when their sibling was hospitalized or when everyone was home seem to have different rules and privileges than their sick sibling. This cause alot of siblings to resent their sick sibling and their parents.
Parents with a sick child is like constantly climbing a mountain and never knowing when an avalanche is about to come. Many parents do the best they can, Every peer I talked to said that they believed that their parents did the best they could.
I met two sisters however who were best friends one was healthy and one had three chronic illnesses. The healthy sister told me how her parents made her feel just a special as their sick sister. She said she understood there were times when her parents had to stay with her sister in the hospital but when they got home they made up for it. She told me stories of her mom waking her up hours before anyone else and they would sit in the kitchen and talk, and cook. She said it was her special time with her mother. She also stated that her father would bring her out of father and daughter dates. It was just her and him and they would forget all their problems and laugh and have fun.
The sisters also talked about the fact that they had family time (movie nights, game nights, and once a month they get dressed up and go out to eat). It was also the girls decisions on what movie to see of what game to play or where they go out to dinner. They took turns on who was going to choose.
They also emphasized that anytime feelings were hurt they would be open about it. They would discuss things as a family.
Don't let your fears and doubts become your child's fears and doubts
This one is probably the most important to your child's outcome. I have met many parents who are facing life and death events with their children. Many of these kids are too young to remember these events but their parents do. Sometimes the horror of the memories of their sick child seems to cloud the reality of their healthier child now.
Many parents have the what if crisis. What if they can't go to college? What if they can't find a job? What if they go off to school and they get sick? Do not let your fears as a parent and the doubts you might have of your child ability become your child's fears and doubts.
My mother instill in me at a young age that you might not be able to keep up or even do some of the things your peers can do but that does not give you the excuse to not try, to not dream and set goals for yourself. When you are a sick child the concept of striving for something is like a life line when things get really bad.
I remember the day I told my mom I wanted to go to a college that campus was a little over a mile wide. The doctors and my mother were a bit skeptical I would be able to get around but my mother said go for it. For that I am eternally grateful. She helped me find resources on campus that could help me get around if needed but it was my choice to utilize them.
I think the greatest gift my parents gave me was the choice to try. If I failed at least I tried. College was a struggles I spent 5 years instead of 4 because of health set backs including a mild stroke my senior year. I asked my mother once why she let me do things that she and even most of my doctors thought I could not do and she simply said " I rather you fail at something you want than regret not taking the chance or even worse resenting us for not letting you believe"