I haven't posted in awhile as we've been crazy busy and blessed. Libby's dream of going to college has been challenged in several fronts. She finished the semester strong and did well in her art courses; her required basic courses didn't go so well. Timed reading and math tests don't work for her. Despite the best efforts of Mariah Jennings and Jennifer Collins, Libby's grades weren't what they needed to be.
I took a protective easy out and changed Libby's degree plan to a certificate program. This way she doesn't have to take anymore reading or math courses- focussing only in her art and fun stuff. By doing this we lost financial aid and I guess that's the other side of this bargain. Libby continues in college and it will cost us some extra money.
She is taking basic theater and speech communications, along with her art classes. Learning to navigate the computerized world of graphic design seems daunting, but I'm down for a challenge. I just hope she is.
We had an appointment with Dr. Hottie at 11:45 and didn't get to leave until after 4:00. Libby got her Botox, which she needed, and we made plans to do a Baclofen trial as soon as we can get it scheduled. Considering a Baclofen Pump hasn't been something I wanted to do, but if it will keep some of the fogginess out of her brain I am willing.
I also haven't thought a stomach tube is a possibility, but to ensure her health and get nutrients into her it may be something we move towards. Not yet though.
She's been having terrible nosebleeds. Gross, heavy, unpredictable bleeds. Yuck. Doc ordered some tests and we were at Cook Children's for longer than expected.
We did a Baclofen trial several years ago and it didn't go well. After the test, Libby couldn't walk- that was back when she could still walk. I can remember saying to our Doc after last trial that I "didn't want to risk her mobility" and he reminded me that one day I might reconsider. Yep, reconsidering. I bargained back then.
My bargaining happens within my heart as I reach up and out to Powers bigger than me. I am brutally frank!during these discussions because my God never lies to me.
Years ago- Please, keep Libby's legs moving, we can't carry her.
Well, turns out we can.
Then- Please keep Liberty's bowels and urination normal. Just let that cup pass without touching her and I'll not complain about lifting her.
Well, turns out I can handle incontinence pretty well. (High level of suckage though! What college kid wants to worry about THAT happening in class?) Geez!
Next- Please don't let Libby waste, help me keep a healthy weight on her.
Now I get it. This is human error.
As a flawed person, I can't offer bargains. I don't think anyone can. We do this when we know something is the truth and don't want to accept it. We make offers that we mostly can't fulfill. I don't complain outloud about lifting Liberty or about completely bizarre and erratic inability to control her pee, but I yell it in my heart.
" I didn't sign up for this!" Or "Come on, give us a break!" And "what am I doing wrong that this is happening?" Closely following "what can I give up to stop this?"
I believe that I can't stop or control how Liberty's disease progresses. Aside from food, pills, and potty times, I don't have control.
I have to trust that although the road may be ugly and hard, we are loved and supported. I don't have to worry about tomorrow, no bargains needed, as we have love and support.
Lyme, Parkinson's, and Dystonia suck and they are hateful adversary's who are busy stealing Liberty away. I can't bargain against evil, instead I will rejoice in hope.
No, I am not giving up. I will always "rage" against the progression of Libby's condition.
Always with hope- even when it's audaciously hard.
