[/caption]In Michael J. Fox's most recent book (A Funny Thing Happened on the Way to the Future, Twists and Turns and Lessons Learned, April 2010), he describes his Parkinson's as "the gift that keeps on taking..." What a totally apt way to describe a disease, particularly one like Parkinson's. Yes, it adds dimension and depth and gratitude where you never expected it. And yes, it also provides loss that you never imagined experiencing.
The gift from this year has been in part the appreciation I feel for the small things that we do every day without thought. I mean recognizing that walking up the stairs can be a major accomplishment. Getting out of the bathtub takes a lot of strength. Oh boy and the sweet juiciness when all of it starts coming back! And the desperation when it recedes once again.
Things have been backsliding a bit as of late. Ellie has been having more seizures (about one a week). Seizures where she is fully cognizant, but her body is convulsing. Very different from what we have seen previously. We went to the endocrinologist on Thursday and discovered that Ellie is once again gaining weight at a rapid pace (called hypothalalmic obesity). She has become interested in
[caption id="attachment_2842" align="alignright" width="300" caption="Lotta with open eyes!!"]
[/caption]eating again, which she lost last year, which adds a whole new dimension to controlling her caloric intake. One way to control the weight gain is through exercise. So today Ellie and I began to walk to Blockbuster, which is over a mile each way. Ellie was struggling. Not only was she having a challenging time feeling as if she was going to fall, but she was having a hard time even standing straight. Drooling mightily all the way. And I am ashamed to admit that it just made me mad. Mad mad mad that she has to struggle so. Mad that she has endured so many surgeries and chemotherapy and still can't take a walk. I want my money back mad!
Then Ellie tripped over a crack in the sidewalk and landed face down on the pavement. As she struggled to stand, she wailed at the top of her lungs as if her very heart were breaking. She finally righted herself, telling me that she needed to go home because her knees were hurting. When she fell, was I compassionate, kind, understanding? Helpful even? Nope. Just mad. I couldn't believe that she had fallen again. Because you see she fell the day before at St. Vinny's.
[caption id="attachment_2843" align="alignleft" width="225" caption="Lotta and I catch a nap."]
[/caption]My aunt Suzanne sent a package with clothes for Lotta and cash for Ben and Ellie (10 bucks a piece, do you know how much you can purchase at St. Vinny's for 10 bucks?? A LOT I tellya.) At one point in the store, we were perusing the infant clothing. I asked Ellie to come stand beside me so I could better see her. As she started to walk towards me, she tripped over a display and landed face down on the hard floor. She began to wail. The woman standing in the section asked what she could do, should she hold the baby for me (the baby was strapped on in a carrier) or should she help Ellie. She helped Ellie to sit up and then helped her into a standing position. She informed Ellie that she was a doctor and checked her aching knees. And I thought, well if you are going to fall, right in front of a doctor I guess would be the best place to do that.
So all afternoon, I have been struggling with disappointment, discouragement, dismay--with myself for not being the kind of mother I wanted to be when Ellie fell AND for having Ellie continue to struggle with all of these issues when I am so ready to move on. So that's the gift that keeps on taking. I know that all of this pushes me continually to become more, to make my life bigger. But dagnabbit if there aren't times I just wanna lay on the beach, easy and cool, reading a book. Today my wish is for ease for my sweet Ellie who continues to try even after she falls down again and again.
I wish you both ease!! Love to you.
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