Wednesday, September 14, 2011

The Hardest Job of Parenting IH Kids

Everyone agrees that parenting is a tough job.  I doubt if anyone would argue that parenting a chronically ill child is even tougher.  But what does that really mean?...

In our house, with an IH kid, it meant propping her up every morning so that she could get adjusted to the daily pain level, eat some food, choke down her pills, and point her out the door to school every morning.  Of course, that was on the days when she was well enough to go to school.

Since our daughter was diagnosed during her pre-school days, we quickly realized that I had to quit work and become a stay-at-home mom.  Giving up a career was not a hard choice in that situation -- she desperately needed for me to stay home and help her.  Giving up the big salary was little tough, but we had always lived within the means of one income.  We can live without new cars, furniture, modern house updates, etc.  In that way, we were lucky (according to some friends).  I don't see it as lucky, but we have survived.  Being able to stay at home has been absolutely vital to my daughter's education because there were many, many days when she could not be pointed out the door towards school.

That means that I was one of her teachers.  We obtained a second set of books to keep at home.  We worked out a traveling folder system with all of her teachers.  Lesson plans, assignments, completed work, papers to finish, writing assignments, and even quizzes and tests were sent back and forth to school with the help of her brother and neighborhood kids who carried a colored folder system to each teacher.  She was able to read, study, and have me teach her during the short periods during the day when the pain was slightly less.  Not a fun life for a kid!  Every single time that she felt a little better on those days, it was a "hurry up and learn this" event.  It was all learning and none of the fun stuff that happens at school.  No recess, no laughing with the kids, no art class, no P.E., no lunch table conversations, no music class, no classroom projects, no classroom videos, no classroom discussions...

It was obviously not the best learning environment and, yet, it worked.  She is now in high school and still struggles to keep up with the workload.  The result of all the learning difficulties and adaptations has created a phenomenal strength within my daughter.  I hated pushing her when she was sick.  There were quite a few times when I just let things slide because she just couldn't do it that day or week.  During those times, I would eventually have to push myself to push her.  There is no such thing as going on disability from education.  Children have to learn to keep advancing in school.  Repeating a grade is always an option, but that would have been very demoralizing in an already difficult situation.  And, anyway, this disorder is never going away -- it will never end.

After years of persevering, the toughness is showing.This morning my daughter woke up with a tremendous headache.  All of you with IH know what that means -- real, nasty pain.  She had to lay back down and missed her first class of the day.  However, she had a presentation of a project with another student during second period.  She couldn't let her friend down, so she toughed up, got dressed and left for school a little while ago.  I think that she's tougher than me now!  I guess that I should be proud that she's able to overcome such obstacles, but why did I have tears in my eyes when she left?

One more thing --  because this is an invisible disease, not a single person at school will know just how tough she is...


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