Friday, May 27, 2016

Elusive Energy

Ruby had mono.  It's been a whole saga.  In the middle of it, we redecorated her room, as she needed a clean, comfortable place to sleep all day. :)  As a parent, I suppose I was channeling my nervous energy into the room, trying to control something in a world that was spinning out of control.  After the initial emergency room drama and diagnosis (Ruby had a high fever and her gut hurt, but not on the appendix side. Dr. Hoagland looked at her and sent her straight to Primary Children's. Her temperature was 104 and her spleen was about to burst), Ruby had high fevers all the time and just had to sleep.  All the time. She literally could not get up. If she pushed, her spleen, which is responsible for filtering infection, would swell and threaten to burst again.  After awhile, she was her old cheerful self, at least for a couple of hours a day until she crashed.
Ruby at the ER with a fever of 104.
She had said a few times, "I wish I could get hit
by a car, just a little bit, so I could be in the hospital
and sleep." She was that sick.

Looking back, she had been fighting this throughout the busiest time of the year, and I felt so badly.  She would come in the house exhausted at 9 or 10 pm, every muscle and joint hurting, and just flop on the couch and cry before picking herself up to start her homework.  She would push herself to the brink until midnight or so, then she was back up at 4 or 5 in the morning.  Yes, she needed more sleep, but this time of life isn't exactly geared for the amount of sleep teens actually need.  It's hard to keep up with all of it, but what would be harder would be NOT keeping up.  It would take two days, maybe three, of not keeping up before a high school student would be irrevocably behind.  Not only are scholarships and futures riding on their grades, but they have obligations to teams or groups or teachers that simply must be met.  This is life.  We all know flakes.  Their lives are complicated, and they complicate everyone else's lives, too.  You don't want to be a flake.

So when you get sick and drop every ball, it's hard.  Suddenly, you're that girl who didn't show up or had to cancel or missed important rehearsals.  Suddenly, all your A's are D's.  It happens so fast.  So Scott and I took Ruby out of school.  I emailed all of her teachers, which was so out of my comfort zone.  I never meddle with my high school kids' teacher-student relationships, but Ruby just couldn't do this.  I went from the mom who is all, "You're fine, take two of these and get in the car," to the mom who had to say, "No.  You can't do this.  You need to stay home and sleep."

And sleep she did. 20 hours a day. All of her teachers have been very helpful and generous.  I think a little bit of my Mama Bear came out, and I just asked for what Ruby needed instead of trying to help her accomplish everything.  I explained the situation and asked that she be excused from everything for the rest of the year.  She still ended up with a fair amount of homework.  Actually, a huge amount, but nothing compared to what she would have had to make up if she hadn't had such compassionate teachers.  Her seminary work is all on hold until next year, for example.  Her AP Psychology teacher gave her full credit for being there when she wasn't, which was major, as each class period after the AP test is 50 points.  That grade had gone from an A to an F within two days, so her teacher's help excusing those points was vital and much appreciated. Golda and I had to do a major English project while Ruby tried to contribute from her bed. She was too sick to even lift her head up, but her teacher still insisted that this big project be done.

This ordeal has been hard.  Every morning when Ruby is still in bed at 8 or 9, I have a tiny breakdown, cry for a minute, then move on.  Families are like living organisms, and if one part of that whole is down, it affects everyone. Tziporah has felt it.  One day, she lamented sadly, "Everything is different.  Ruby is sick and everything is different."  One thing that's not different is Ruby's giving, happy personality.  If she only has an hour of energy, she'll spend it on the kids.  And there has been a silver lining.  After the first few weeks, when Ruby didn't have the strength to even watch TV, she started coming out of it.  She got a free Netflix subscription and became addicted to Gilmore Girls.  Now it's a thing.  We're all hooked.  I hardly ever watch TV because frankly, I'm too lazy to turn it on and find a show.  But now, I look forward to seeing what those Gilmore Girls are up to every night, snuggled up with Golda and Ruby and any little kid who wanders in and snuggles up to Ruby, looking up into her serene face, searching for confirmation that everything will be OK.  In the moment that she looks down into their eyes and gives them a big, confident smile, I know it will be.


Ruby wasn't the only one who was tired!  Maria routinely breaks down a mile from home.  She's just addicted to coolant.  I came to rescue Ruby and give Maria her fix, when Ruby was on her way home from the Dance Company Soirree. Don't they both look lovely? :)







While I was at it, I did Victor's room...
and Sofia's room.  They arrive June 23, and we are ready!!  It's going to be a good summer.  Ruby will be recovered, and there will be nothing but fun, celebration and relaxation on the agenda.  Ah, bring it on!

3 comments:

Unknown said...

This is such a hard thing. I went through a similar thing with Jessica a year and a half ago. She came home for Christmas after her first semester as a music major. Within 24 hours every joint in her body was aching, and she broke out in the most herrendous rash that startled our doctor. I was sure we were dealing with lupus. Autoimmune diseases abound in our family. In fact, I have a blood disease that developed in my early 20's, and her rash looked worse than any rash I had seen when my platelets had dropped to life threatening levels. You can imagine how I agonized over my sweet daughter. I was terrified that the 14 hour days she was keeping in college, hardly sleeping or eating, combined with the pressure of her major had given her a disease that she may suffer from for the rest of her life. She didn't even want to look at her cello. This was a girl that had done nothing but eat, drink, and breathe her music just six months before. We never did get to the bottom of those crazy symptoms. Everything slowly subsided. She had just finished juries that had not gone as well as she had hoped. I think her body was literally shutting down. It was during this agonizing Christmas break that I told her that she didn't have to keep doing this. If this major was making her hate her instrument and was going to make her sick, then it simply was not worth it. I watched the whole world lift off her shoulders at that moment. She switched majors, and is finally beginning to love her instrument again. She plays in the community orchestra and will be helping the orchestra teachers in the local schools in the fall. As moms, we have to step in sometimes and help our kids let go of a few things so that they can take care of themselves, especially when we have kids who will not accept failure. (Or what they unrealistically deem as failure.) A B grade in a class is not the end of the world. Chronic disease isn't necessarily the end of the world either, but it can make a young person's life very difficult. Trust me. I've watched it in my family. I know exactly what you must have been feeling as you watched Ruby struggle. My prayers are with you and your sweet daughter. I hope that she continues to recover and finds herself in full health in no time. And you take care of yourself too momma!

Jennie said...

I hate knowing she is having such a hard time. It is comforting to know relief is on the horizon. I'm so glad her teachers were cooperative. There is nothing worse than when someone wants to be hard nosed during a time when compassion is the necessary ingredient for success. Rubes, we love you!

Amber said...

Sorry to hear about Ruby-- I remember a girl my junior year who got mono and had to drop out that year. Health has to come first. Glad she is recovering!