Have you ever had someone read to you? If you haven’t it’s a beautiful gift to give and receive. This past year my friends Marcy and Sheila have read to me weekly. Marcy often reads from her favorite book, the Bible, and on occasion will read me a children’s book with a beautiful message.
One of the books Sheila read to me was The Butterfly’s Daughter by Mary Alice Monroe. This book is about a daughter trying to find herself and learn more about her family. Along the way we learn about the fascinating life and migration of monarch butterflies.
This winter Mark started to read to me after my sister Deb brought us a signed copy of our family friend Terry Nolan’s book Reunion By Murder. Although Terry’s book is fiction he mentions many of Muskegon’s landmarks which made us feel like we were traveling around town with the characters in his book. Terry’s book is well-written and will captivate your interest to the final chapter.
The last book I want to talk about has not been published yet. Our good friend Bruce Olsen told us that when his sons Todd and Craig were young he would make up bedtime stories for them. He put one of the stories to paper. We loved Journey to the Pumpkin River. Look for it to be published some day.
A few weeks ago Corey was home for a short visit but extended his stay to help Mark care for me while I was so sick. We spent a lot of quality time together and he happened to be here when my Wednesday night girlfriends came to visit. Corey has a beautifully written blog of his own and in one of his posts he described perfectly what our Wednesday nights are all about so I asked him if I could share that post on my blog and he said yes.
Earlier tonight, much like they’ve done on most other Wednesday nights since ALS bound my sweet mother to a wheelchair, three of her best friends journeyed to my parents’ condo from the far side of town for a visit. They used to hike and jog and throw outrageous backyard dinner parties together, did the four of them, but now, because my mom can’t do much else, they mostly just sit around my parents’ dining room table keeping one another company. Sometimes they laugh, sometimes they cry, but always, without fail, they show my mom and dad a rare and dazzling and inexplicable kind of love that blurs the line between friends and family and makes me wonder how we got so damn lucky to know so many of these kinds of people.
“Some people care too much. I think it’s called love.”
A. A. Milne
At bedtime Mark carefully picks me up from my wheelchair and gently lays me into our bed. We’ve been sleeping in our bed again not because it’s more comfortable than the couch but because I want to be closer to Mark. Night time can be really scary or lonely with not being able to talk or move. Once in bed Mark rolls me to my side putting one pillow against my back to help support me and one between my legs to better align my hips and legs. He makes sure my hair is out of my face as he adjusts my head pillow and puts my bite splint in my mouth. I’m starting to get hot spots on my heels which could easily turn into bed sores so Mark wraps my heels in a soft material like lambs wool.
I usually fall asleep right away and sleep for three to four hours before I wake up and need to be moved. Before I wake up tired Mark I contemplate whether I can go back to sleep or not. I try to adjust my shoulders by myself but they won’t budge. My legs are the only things I can move to help me get comfortable but they are starting to feel like really heavy limbs. Last night when I woke up my left ear was burning because it was bent over while I was sleeping so I wanted Mark to rub it. I tried to explain for about five minutes before Mark understood what I was trying to say. When he finally guessed my ear he thought I said no and kept naming more body parts until we came back to my ear again.
I want you to understand that I am one of the lucky ones dealing with ALS because I still have a voice. Some ALS patients lose their voice early on and don’t have a Tobii to speak for them or have a companion to sleep next to them. Mark and I have had two years to communicate with each other and work out the bugs so that I am always made comfortable. Some people never get this time.
I am truly one of the lucky ones.
My body might not work like it once did but my mind is still the same. My long-term memory actually may be a little sharper because I have more quiet time to think. Having a sound mind and a lot of time to think can work against me sometimes, so I try to fill my time with uplifting people, movies and books. I try to fill my thoughts with prayer, stories for my blog and not feeling sorry for myself. One of the most intriguing things about my mind is that I’ve seen so many more God moments than ever before. These amazing moments may be small, everyday things I notice or they may be huge like watching my family rebound after my diagnoses and really start living again. One of my biggest joys in life is watching our kids soar through life and if they fall along the way watching them get back up and fly again. That is what I call a God moment. My will and determination are strong most of the time but once in awhile I crash and burn. Lucky for me I’m not down for long, probably because I’m able to see more beauty around me than sadness. The thing that helps the most is being loved.
Our son-in-law Chris said goodbye to his precious mother Elizabeth Ufnal on January 7, 2014. Liz was bubbly, welcoming and made us feel like family from the first time we met her. She was stunning with the most beautiful blue eyes. We will remember her every time we look at the sweet grandson that we share because he got grandma Liz’s eyes. Liz was 59 and had been battling cancer since late summer. Even though we’ve only known her and her family for about four years we have grown to love them as our own. Our love and prayers go out Bill, Chris, Natalie, Trisha, Barb and the entire family. Rest in peace, Liz.