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The Ultimate Goal

At this time, my son is still in high school and will be graduating later than his class. This is because he has missed so much due to being chronically ill. Many people are uncomfortable with the idea of “graduating late”,... late as in “normal expected time.”


I sometimes wonder why being on a “normal path” is so painstakingly important to some?


Most people expect life to move in chronological order and in a certain timeframe….high school, college, work, marriage, kids, etc. Before having my son, I had the same thought process and would have agreed, but now a “normal timeframe” doesn’t matter as much to me.


Other parents with high schoolers in my son’s grade are discussing plans for college and beyond. People ask both my son and me what his plans are. I am not even sure yet if my son will be able to complete college due to his daily medical issues and lack of energy. In fact, I have no idea how independent my son will be in life and it has nothing to do with how smart or willing he is to be independent.


A chronically ill child doesn’t magically turn 18 or 21 and have their health automatically change. This is what you hope for and strive for, but things don’t necessarily change because of the calendar.


However for parents with a chronically ill child, there is an even deeper painstaking question:. “If your child is late in completing school and moving on to a job or picking up a trade, how long will you as a parent financially and emotionally support them?”


In other words:

  • “How long will I continue to…..pay for my son’s expenses, drive or accompany him to doctor’s appointments, prepare food for him on his hard days, help with laundry, allow him to live with me, and all of the other mundane everyday things?”

  • ”When will I expect and/or demand total independence? When will I cut the cord?”


I know people around me and in general have this question. Even in my medical discussion groups, people often mention that they receive this particular question from both family and friends.


I’ve been lucky in that no one has personally and straight out asked me.


I’m not sure how I would react if someone asked, but I know it would take everything in me to remain civil. Asking that question of a parent with a chronically ill child feels like a stab in the back; a kick in the stomach. Part of me feels that it is a crazy outrageous question, but the other part of me thinks about it a lot. Believe me, we want our kids to leave the nest and fly just like the next parent.

We want our kids to have normal lives and follow the normal cycle of life.


Knowing my son’s physical limitations, I recognize that full financial and emotional independence may or may not be possible.


After hearing a career coach speak, I have modified my ultimate goal for my son. The career coach knew that my son’s college and career path would not necessarily move through the “normal” progression of what most people expect. She had a totally different way of looking at his life than the traditional or “normal” path.


She said that with a chronically ill child, our job is to help the child answer the question:


“What path is a good one for me to learn a skill

that allows me

to make a meaningful contribution

in a way

that works best for me?”


So this is my new ultimate goal for my son. It is no longer around college and job. I AM giving my child the freedom and framework to go in the direction that is best and doable for him. I am giving him a chance to have success in life. To that end, we are planning at some point to work with a career coach who thinks outside the box.


So, “yes,” my goal will be to make my child as independent as he can be and cut the cord as much as possible. However,... I will always be there to support him in life, whether financially or emotionally, until I no longer can.


That is how I answer the deep underlying question: “How long will you support your child?” What is your answer?


#parenting

#experiencinglife

#chronicillness

#newnormal


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.




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