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?