Friday Update and The Grieving Process

It’s been a long week.  Jessie hasn’t been able to attend school any more this week since the one class on Monday.  Sleep has been practically nonexistent.  We added back all of the medication last week and the Charlotte doctor said that we should try increasing the Lyrica if Jessie continues to have trouble sleeping.  So I’m going to give her 50mg tonight instead of her usual 25 mg.  For some reason, I don’t think that will make much difference.

We got the news this week that the school is not going to recommend honors or AP classes next year (11th grade) for Jessie. The reasoning for this, according to administration, is that she can’t get the full impact of the course (lectures, discussions, etc) while working from home.  I was surprised when we got the news and Jessie argued at first, then realized that there is nothing she can do about it.  This may be hard to understand, but hearing those words was like a slap in the face.  First I felt a sense of relief, then confusion, a bit of anger and then more confusion.

Jessie is one of the rare cases of CFIDS that doesn’t have the brain fog or cognitive issues.  In fact, throughout the past three plus years of dealing with this debilitating illness, she has remained on the honor roll, making only a few B’s.  She’s been blessed with a gift of knowledge that absolutely didn’t come from her mother!  Anyway, the news leaves me torn.  I know that Jessie will have less stress next year in regular classes, which is a good thing.  I’ve never been academically tough on my daughter.  In fact, her dad and I have both encouraged her to take fewer advanced classes lately to relieve stress.  However, I know my daughter.  Jessie’s bar for herself has been set incredibly high regarding her classes and her grades.  She always insists on taking rigorous classes and strives to make only A’s. 

Since Jessie’s had this illness, she’s been robbed of her teen years.  She can no longer participate in sports.  When she’s sick and even many times when she’s not, she isn’t up to participating in extra-curricular activities because energy has to be carefully measured.  Also, when she’s sick, she doesn’t feel up to seeing friends.  This past year we had to move to another state and Jessie was taken away from her support system, her friends.  Because she was only in school for two months, she didn’t have the chance to create the friendship she desperately needs.  This move was very difficult for her.  

So, basically the only thing that Jessie absolutely KNOWS that she has is her exceptional ability to learn.  Now because of this stupid disease, she will have to attend classes that she will literally float through.  Jessie wants to work in medicine, possibly becoming a doctor.  She jokes that she’s had so much experience recently with doctors that she may as well become one.  

Don’t get me wrong, I am at the opposite end of the spectrum when it comes to pushy “helicopter” parents.  I’ve been more in favor of quiet time than over-booked days.  Before this illness, activities and sports were limited.  Now however, I don’t know what’s right for her.  Under normal circumstances, this girl is fully capable of taking dual-credit high school courses in the 11th grade.  She has aced honor courses for the past 3 years while attending less than half of the actual classes.  Is it right to make her take a lower level class, beneath her true ability?  Will this yank out the one thing she has now that gives her pride?  

On the other hand, we know that we’re not talking about normal circumstances.  Will taking the regular classes give our daughter time to breathe and maybe a little more energy to attend a few football games and dances?  Is this part of the grieving process I’ve read about for parents of chronically ill children?  Is this a parent’s guilt after uprooting a teen and making her move to another state, away from her friends?  Most importantly, where is a good psychiatrist when you need one?


Filed under Daily Chronicle

4 responses to “Friday Update and The Grieving Process

  1. I’m feeling the weight of this disease today, and so I feel your dilemma a little more acutely than normal. What a difficult decision for you.

    My initial instinct is to let her decide, and then you push hard for whatever she chooses. CFS takes away so many choices. If she loves her academics more than she loves going to football games and dances, then I would fight for her right to take AP classes. But, maybe she’s more worried about what it might take away from her in the future, instead of the right now. Then, I’d reassure her that her dreams of college and being a doctor are not going to vanish because she doesn’t have the AP courses on her high school transcript. One thing you learn from CFS is that there are more than one path to your dreams.

  2. All I can say is that I completely understand and relate; though I don’t know the right answers. We’ve gone through all the same things this past year, including the loss of friendships, sports (dance), and social groups. Jessica was also an A student in pre-ap classes, but we made the decision to put her in regular classes for some relief from the homework and stress right now while she needs it, thinking that we could change that later and possibly put her back in pre-ap. Jessica wanted to stay in pre-ap classes and she took pride in being in pre-ap. Jessica also wants to go into medicine, but veterinary (possibly equine) medicine, so her education also is important, but she still has that dream.

    Whatever decision is made, Jessie will do well with it. Another thing that Jessie has is the support of her family and a good mom that loves her and is her advocate.

  3. Sue

    Lori –

    I’m so sorry for what you’re going through. We went through the EXACT same thing when Jamie started middle school in 6th grade. He was very ill at the time (this was before Florinef). He was a straight A student, had only minor brain fog, but he was missing his standardized test scores from 5th grade because he’d been too ill to take them.

    The 6th grade advisor initially put him into all regular classes – no Honors and in a math class 2 levels below where he should have been. We basically freaked out! She said she wanted to make things easier on him, but we pointed out it was the same volume of work, only he’d be bored and working on stuff he’d already mastered. We brought in articles about CFS cognitive dysfunction – how it can affect simple computation but leave kids still able to grasp complex concepts (which was exactly how it was with Jamie). We also got another letter from Dr. Bell to support what we were saying.

    They finally agreed to put Jamie into Honors Math and English, but the math teacher would not move him into Pre-Algebra where he belonged. It was so frustrating! Once he improved on Florinef in 7th grade, his math grade was 105! So, he recently started high school a bit behind where he should have been in math, but his new teacher’s been understanding.

    Bottom line is that you have to think hard about what’s right for your own child (and how she feels about it). Every case is unique, and you know your own child best. If you decide that she should be in higher level classes, there are some things you can do. Start by contacting your district 504 coordinator. She helped us many times – she had far more experience than the school coordinator in doing a much wider range of things for kids. You can also talk to someone at the state level, in the state department of education (in our case, the district person was most helpful).

    On the other hand, you might decide it’s better for Jessie to stick with the way things are. Either way, though, it should be your decision. You have a lot more power as her parents than the school wants you to believe, and you know her best.

    As for thinking ahead to the future, I’ve read so many stories about kids who were severely ill with CFS in high school and later recovered or at least improved a lot. Lots and lots of CFS kids have gone on to college and productive lives. It IS possible – her path might just not be the standard one.

    I know what you’re going through. Hang in there – things will get better.


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