The other day during a lull in our conversation, Melissa said with great zeal, “Janine I love you.” I am fortunate because she lets me know that fairly often. She went on to say,”even when I say I hate you, deep inside I love you. You know that don’t you?”
I responded by saying, ” I don’t recall you ever saying that you hate me.” She let on, “I think it sometimes.”
My heart melted into a pool of sweet joy. I was filled with the sense that I was witnessing something very unusual, extraordinary really, honesty blended with pure love. You know what pure love is don’t you? We’ve read about it in philosophy books and on the pages of spiritual text.
I was curious. My senses perk up when in the pressence of such wonder. I said, “Melissa when is that you are thinking that you hate me?” She said glancing up to the ceiling, “when you are pushing me.” “Like when I am stretching you in the morning?” “Yes,” she noted.
“Do you feel you hate me when I am making sure you wash your face or when I write out a sheet of math problems for you?” “Yes.”
She continued on telling me that so much of what we do in the course of a week is frustratng. What she means by that is it feels like hard work and it is.
Handwriting for example can be tricky business. Those letters get jumbled. Think about all the steps in writing the letter W. You have to think W. Then you have visualize, W. Then you have take your pen, place it in your hand properly, put the tip of the pen to the paper and begin to slide it along. For Melissa, she places the pen down then suddenly it is moving in a circle as if it had a mind of its own. Beginning again an attempt is made to write a W. Maybe you or I could jot down a W with great ease but for her, it can be challenge.
Then there are those dasterly stretches. You’ve been to the physcial therapy once or twice in your life, right? You know how brutal a stretch can be when your tendons are tight and her tendons are tight. It hurts but it has to be done otherwise they shrink and legs and arms curl up.
The clincher is when I come at her with the third ten ounce drink of the day. More fluids Melissa, I exclaim. with a smile. I can almost hear the “I hate you,” then.
We continued with our chat and she repeated, “you know I don’t hate you, right?” I said, “Yep I know you don’t hate me. I know you love me. You know we’ve done good work for eight years, right?” She agrees.
“I wouldn’t be in the shape I am in if we didn’t do all the work.” I acknowledge her insight.
I softly reply, “I know. I know it is hard frustrating work. I get it.”
She ends saying, ” Janine I love you.”
“I love you Melissa.”
If you know Melissa and have yet to read up on leukodystrophy I encourage you to do so. It would be a very long article for me to list all the aspects of this disease in the stage it is in currently.
Her mother and I are in the thick of it as primary caretakers. No one aces it like mom by the way. I can only hope to reach that level of love and compassion, oh and sacrifce. Kathy is a model of strength.
We have decided the mission of Melissa’s book Snowball’s Great Adventure and Team Snowball is to be of service to families dealing with children with leukodystrophy. If you were to read some of the stories your heart would break over and over again.
Kathy, Melissa’s mom and I agree that the best way to honor Melissa’s own stretch and courage is to continue to be of service expanding our work in the direction of these families.
I ask family and friends to visit ulf.org the site of the United Leukodystropy Foundation or do a google search information. Education has a way of clearing up misnomers.
One thing is for sure, the road is lighter when shared it together. I have said it before and I will gladly repeat it one hundred times, Melissa is a master teacher to anyone who is receptive enough to see the message in her unique wisdom.