Much
In
This
Life
Isn't
Fair.
Here's my list of things that are not fair....
I made such a list and had to delete it. Said list was way too depressing. Right now one of the most unfair, tantrum worthy things is that Libby had to have her Deep Brain Stimulators' batteries replaced only 15 months since they were implanted.
Libby had been at a very high setting for over six months which apparently wore her batteries down much faster than expected. In early October, we went to have her quarterly appointment for DBS check and Botox, the nurse asked whether or not her right battery, "should be on". I had to leave the room before I threw up on everyone. Ugh. Her battery hadn't been working for awhile and I had missed it. I had blamed her increased spasticity and apraxia on her needing her Botox and the demanding schedule of her first semester of college.
We had been living her dream. We were going to work and both of our daughters were going to college full time. The art that she's been producing is amazing. She's been making it. I mean really making it in college, with help from Mariah and Jennifer. Libby had made it through high school which was not promised; her living this long is truly amazing.
Liberty's progression of secondary diseases has changed so much of all of our lives. She is steadily losing weight, and I promise we are feeding her. Her swallowing issues remain constant as is the loss of tone throughout. The ever changing bladder and bowel problems are NOT fair. Dystonia and Parkinson's are evil and they suck. This isn't fair. Liberty's illness is not fair. We should not have had to take this time to get the batteries switched out. Not yet. Not now. But if not now, when? And aren't we lucky to have the DBS already implanted?
After surgery, Rachael and I got to see a glimpse of what Libby would be like without her brain stimulators on and without her meds. It was awful. Terrifying. Legs locked straight out. Fingers, hands, arms and neck twisted in a completely horrible position. Awful. The spastic nature of dystonia sucks.
Yes, her DBS makes a difference. Her pills, especially Sinemet and Baclophen make a huge difference.
http://professional.medtronic.com/pt/neuro/dbs-md/prod/activa-rc/index.htm#.Vkdt7yZOKnM
With this new battery comes the "three strike rule". If we let her battery die once, we have to call and have it reset. Second time, we have to return to the hospital for training. Third time we let it die, they take the rechargeable battery out. We are approaching bad weather season and my new fear is losing power and not being able to charge the charger. Guess who will be buying a generator- like yesterday. Her battery charger will hold one full battery recharge and then it has to be plugged in. Serious business having a battery operated kid.
There are times when I want to throw myself on the floor and kick and scream in full-on adult tantrum style. There are other times when I want to hide under my bed, or in some other tiny space, and eat ruffles. Most of the time I follow my never ending list of to-dos and keep doing. All of the time I am humbled and grateful for the life WE are living.
Love this blog and what she has to say. I really appreciate this statement.
"God’s will is not an event that happens to us, it’s how we respond to what happens."
So, any tantrums are postponed. I can't control what these diseases are doing to Liberty's body, but I can remain vigilant and do everything I can. We are going to keep moving. Always grateful and not looking for what is fair. Continuing to do more than is asked and more than is expected. Be blessed and be a blessing.
http://www.foreverymom.com/quit-saying-everything-happens-for-a-reason/
