I received an e-mail from Michelle Lane from Louisiana, in which a story that I wrote about my baby-grand Harper Grace, reminded her of the similarities we had in a soothing tremor when holding our grandchildren. She shared that her daughter, Rachel, had written a speech in which she spoke about this, among other things. My response was, “All I can say about Rachel’s speech is wow!” She captures so much of what our kids go through, but very few can put into words.
When I asked if I could post her speech on my blog, the response from Rachel by way of Michelle was, “Absolutely if it will help any other children that are confused, depressed or need a person to talk to she would be willing to help in any way”
What follows is Rachel’s speech in its entirety:
Hi, my name is Rachel. I’m 14 and I go to John Curtis High School. My mom spoke before me a few minutes ago, and I want to explain how it was to grow up with a mother with Parkinson’s disease. As a child, I always wondered why my mom shook and could barely walk. As I grew up, my prents explained to me why exactly she could not do many things. I took dance lessons as a child, and I remember my dad always having to bring me because my mom could not drive. I know she tried her best with simple things like helping me put my hair in a ponytail or helping me get dressed, but it just seemed like she always struggled and as much as she tried, she could not. My mom tried many things from patches and pills, and nothing seemed to work, except for a few hours. It was hard for me, having all the girls talk about how they went shopping with their moms on weekends and went to different places with their moms, but I couldn’t say that I did all those things. I relied deeply on my dad for many things, but it just wasn’t the same. The early stages of my mom’s Parkinson’s wasn’t that bad, from what I can remember at least, but things started getting harder for the both of us as it got worse. Patches weren’t working any more, and pills had to be upped to keep her still. She always seemed exhausted, but somehow seemed to make enough time for me and my brothers.
My mom told me that when I was little, I always had paranoia about getting Parkinson’s disease. She said I would always say my hand was shaking and that I was having symptoms of Parkinson’s, but I was just scared of having the disease that I always thought these things were happening. I remember people asking me when I was little why my mom always shook and why she couldn’t really walk that well, and I never could explain because I didn’t really know how. All I could say was that she had Parkinson’s disease. My mom also told me about a time when my oldest brother Kyle and she went to eat one time and everyone would say something about my mom shaking and my brother said, “Wow! They call this a McFlurry? My mom could shake it better than this!” I guess my brothers and I never really questioned why she shook or anything since we were so young, but it comes to mind as we grow up. Growing up, I guess I really did depend on my dad more than my mom. I still love my mom, but I guess it seemed like she was never there, or rather, she couldn’t be there. It’s not like it was her choice, but I guess I didn’t understand that as I got older and the effects of not really having a mom to do stuff with took over. It always seemed like I was distant with my mom. I still loved her and talked to her like she was my mom, but the connection wasn’t really there. I wanted to go out and do stuff, but I couldn’t because I needed to take care of my mom and that drove me nuts. Now, at the age I am, these experiences have made me more mature and I can tell my connection with my mom is stronger. I sometimes feel like I was a burden to my mom at the time, because I always ignored her or didn’t want to listen to her, and looking back on that, I realize how idiotic it was of me. But then again, I was just an immature kid.
When I was in kindergarten, my mom would volunteer to help with lunch, and since the kids were so little, they didn’t know how to tie their shoes, so they would ask my mom. I remember the kids going, “Wow! Rachel, your mom ties shoes so slow.” And my mom got a kick out of it because it was so cute. I think it’s amazing how she would volunteer for my school to help with lunch even though she would be exhausted just from walking. It was nice being able to see her actually help people and do things outside of the house. There was this other time, the day my nephew was born, whenever my mom would hold my nephew, he would fall asleep because the shaking soothed him. My dad gave my mom a nickname because of this called “Shaky Mimi”.
Not all the times were fun, though. There was a time when my mom was in the kitchen and she fell and busted her head open on the floor. This was about a few months or so before her surgery, and I don’t really remember how it happened, but I remember her having to go to the hospital because it was so deep. My brother and my dad helped her into the car. It was really hard for me because I didn’t know what could happen since she was so weak. But in the end, she pulled out of it just fine and decided it was time to get the surgery.
There were good times and bad times growing up with a mom with Parkinson’s disease, and the surgery has helped her a lot. We go shopping a lot now and do tons of things, and I’m really happy to be here presenting this. I love my mom with all my heart. I’ll always be alongside of her fighting Parkinson’s and helping her no matter what. Without my mom, I really don’t know what I would do.