Search

12 Things…… that Parents of Chronically Ill Children Do Differently

There are so many things you do differently than other parents when you have a chronically ill child. The rules in life just change because the focus is based solely on managing, getting through and optimizing daily life. My son has several chronic conditions that leave him dealing with limited energy, brain fog, nausea, dizziness and low muscle tone, among others.


In my son’s case, I don’t worry about the big things in life because the basics have become the most important. For example, keeping weight on him is a daily battle. My major goal is to help him maintain so we can avoid a feeding tube. I do whatever I can to help him.


Since daily life looks a little different for us, I have come up with a list of 12 things that I feel I do differently than other parents who don’t have a chronically ill child.


I don’t spend time feeling sad about them. It’s just what my life has become. I’m hoping you may be able to relate to some of them.

  1. I always have food and drink ready at the drop of a hat and always prepare ahead of time for my son. Basically, I’m a full-time chef without closing hours…….. since he can only handle very small meals, needs to eat often, and everything has to meet strict nutrition requirements. Nutrition is critical for him and we are trying to prevent a feeding tube.

  2. I bargain with my child to get things done…….. since it keeps a more positive tone amidst the unpleasant parts of being chronically ill. For example, we bargain on when to start a new med, so potential side effects do not interfere with an activity that is important to him. Also, If he doesn’t feel very good and has homework to do, I might bargain with him on electronics and allow him to do homework for 15 minutes, then screen for 15 minutes; alternating until the homework is complete.

  3. Often, I drive my son to school and do not force him to carpool (or take the bus earlier in his schooling)…….. since the interaction wears him out and his body pays for that, leaving less energy for more important things like actual school.

  4. I leave events early when my son feels it’s time, although I might be enjoying…….. since he tires so easily, and he pays for it when pushing himself. Overdoing it can knock him out from several hours to several days. So, it’s critical that I listen to and look for his cues.

  5. I don’t punish my son for every meltdown or squabble…….. since his bandwidth of coping skills is less than other kids. What little energy he has should be focused on what he needs to do for basic living. He already feels guilty enough on his own when he gets upset easily because of not feeling good, and then sweetly always lets me know afterwards that he is sorry.

  6. I always have food and drink ready at the drop of a hat and always prepare ahead of time for my son. Basically, I’m a full-time chef without closing hours…….. since he can only handle very small meals, needs to eat often, and everything has to meet strict nutrition requirements. Nutrition is critical for him and we are trying to prevent a feeding tube.

  7. I miss out on adult activities, family activities and even leisure time…….. since an enormous amount of time is spent going to all kinds of doctor appointments; researching information online or even speaking with others who are dealing with the same medical issues.

  8. I let my child sleep in and go late to school, when needed…….. since his body tells him what he needs. Forcing him to go on time when he is having a bad day doesn’t help anyone. I am extremely fortunate that school is very important to him so he only sleeps in when he really needs to.

  9. I offer to drive and am happy to do it (although he has his license)…….. since I understand that frequent dizziness prevents him from feeling safe behind the wheel. I trust him when he asks me to drive and am proud of his responsible choice..

  10. I am overly patient with my child…….. since often he does not feel good and has brain fog. It is hard to cope when you always feel bad.

  11. I spend a lot of time worrying that my son will be able to hold a job and support himself one day…….. since he has extremely low energy.

  12. I have modified my goals and aspirations along with my definition of future success for my son…….. since what’s most important right now is his focus on the basics of life and everyday living.

When it comes down to it, I do whatever I have the ability to make happen so my son can find peace, happiness and connection in daily life. I am hoping you can relate to some of these points. Just know that you are not alone and there are other parents out there that get it.


Together, we can stick together and Brew More Hope!



#chronicillness #parenting

#missingout

#family

#experiencinglife


Disclaimer

I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.


173 views0 comments

Recent Posts

See All