*I hope the video link works. It is worth reliving.
For me, it's not about the bucket list, it's about filling the bucket.
Just over a year ago Liberty walked across the stage and got her high school diploma. For a child that started out healthy, outgoing, vivacious, unpredictable, smart, independent, stubborn, and loving, her graduation was a given. For the child who lost full neurological function due to the Lyme disease that went undiagnosed, her graduation was a miracle.
Chronic encephalitis, dystonia, Parkinson's, spasticity, detrusor-external sphincter dysnergia and speech apraxia are her current diagnoses. She has rechargeable Deep Brain Stimulator's, meds on a five time a day schedule, braces, lots of equipment, and we are hoping to get a Baclofen pump by the end of the summer. Since her diagnosis January, 2010, her body and prognosis has changed. Her main doc, Dr. Hottie, doesn't discuss any prognosis as Liberty has been in uncharted waters for a long time, plus it's too hard to discuss.
I have been afraid of anything happening that I could have stopped. Afraid of Libby getting hurt. Afraid of doing anything extra that could hurt my body and keep me from taking care of Libby. I have been careful of our adventures. We've had lots of fun and lots of adventures, yet I've been beyond cautious.
I've bought Libby lots of stuff that I thought would make her happy. Buying stuff was not something I did before she was struck with illness. Many beloved others have bought her stuff. We've pushed to move towards experiences, but not full force. Something changed in me early this Spring.
I'm done with stuff. I want to go and do. I want to fill Liberty's bucket with stuff we've done. Fill it with adventures that left our hearts racing and our tears flowing. I don't know what time we have left and what any tomorrow holds, so I am going to push that we go and do. While we can, we will.
While I can; I will. While we can; we will. For the child who is smart, funny, flirty, adventurous, and has a list of medical issues, everyday is an empty bucket and I say lets go! I have to continue to let go and get going. I have to trust and relish the adventure. I have to- to remember her.
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