It’s evening and I just woke up from a three hour nap. Actually I just scared the shit out of Mark because I was choking. I quickly gained my physical composer but not my mental. As I sat on the couch crying next to Mark I felt so much grief. Even though Mark tried to console me I was struggling and I didn’t want to ruin his night so I decided to write.
Writing has helped me handle this mind-blowing disease but it is getting tougher for both Mark and I. It’s getting harder because my legs are getting weaker and my speech is barely understandable. I’m choking more frequently which can be scary to everyone present. It’s getting tougher because sometimes we test each other’s patience.
Right now one of my biggest obstacles is declining some social events. I know this may sound trivial and I should be more concerned with more important things like walking, talking and choking but it’s not trivial to me. My mind is still wanting to do everything but my body and Mark just want me to be reasonable and safe. I hate to give in to this shitty disease and let it alter our social life but I guess it’s time. I guess it’s time to compromise.
Cole and Peyton made their First Eucharist together in May and they each described the wine very differently.
While sitting at a Chinese food restaurant this week I asked Cole if he enjoyed his First Eucharist celebration and he said, “Yes, it was really cool but I didn’t like the taste of the wine so next time I will politely bow in front of the cup and walk away.”
While having dinner one night we were talking about our favorite alcoholic drinks and Peyton pipes up and says, “My favorite drink is red wine.”
Cole said, “Peyton, you’ve never had red wine.”
Peyton came back and said, “Yes I have, Cole. At church.”
The first time I realized that time could be a gift is when, as a teenager, I asked my dad what I could give my grandma for Christmas. He said that she didn’t need anything but maybe I could give her a gift of time. Maybe you could offer to do something at her house that has become too hard for her to do herself, he said.
After I retired, Mark and I were talking one night and I was saying how much I missed my sisters because I had more time on my hands but they were all so busy. Mark suggested I give myself the gift of time so I invited my sisters to go to Chicago for a weekend. It was the first time that my older sister Judy and my youngest sister Mary ever spent a weekend together since we were young. Judy and Mary are 18 years apart so have never had the opportunity to spend a lot of time together.
Another gift of time I gave to myself was when I was going to Shelby to visit my Auntie Sis. Auntie Sis and I would spend a few hours together and then I would go visit my brother Jim who works in Shelby at Beckman Brothers and we would go to lunch. I loved the hours we spent together.
This year for my birthday I was given the gift of time by my friend Patti Winsemius. My friends Cindy, Ellen and Patti come to visit me on Wednesday nights while Mark goes out with friends. During the school year Patti hasn’t been able to join us because she teaches dance at Cassell. For my birthday gift Patti worked it out with her boss so that she could have Wednesdays off and join Cindy, Ellen and I.
I think the gift of time is one of the best gifts ever. Thank you, Patti.
I’m grateful to have so many strong women in my life to learn from. These women range widely in age and in profession. Some are my relatives, some are neighbors and some are friends. I could go on and on describing amazing things about each one, but today I would like to talk about one of my favorites, my daughter Kelly.
Growing up with three brothers probably toughened Kelly up a little. Kelly was very shy and timid as a little girl but was always confident around her brothers. When we would go to a restaurant we would encourage Kelly to look at the waitress and order her own food to push her outside of her comfort zone a little. As she grew up she became more and more comfortable and independent but she still needed our guidance. After Kelly graduated from college with her nursing degree I started to notice a strong and confident Kelly. A year after she landed her first nursing job at Devos Children’s Hospital she decided to become a travel nurse and move to San Diego for a while and then to Dallas. She continued to get stronger as she experienced life far away from home and adapting to each new work environment.
As Kelly’s knowledge of nursing grew she decided to try the management side and became a Clinical Nurse Manager at Towne and Country Pediatrics in Chicago. This too helped Kelly to grow and become stronger.
Now my once shy and timid daughter is displaying her strength more than ever while being one of my patient advocates. Kelly helped me understand some sensitive medical topics as we learned more about this disease. As a medical professional and a daughter she never pushed me into making a decision even though at times she may have wanted to. This past year Kelly and I have had many serious talks about the future and about dealing with death and through these conversations we’ve both become stronger and closer.
I’m so proud of and grateful for my strong daughter.
I found this letter to Chad on Devin’s Facebook page and thought it was so beautiful that I wanted to share it.
He has embraced my crazy, my life, my family, my kids. He makes me stronger, gives me my space, he helps me when he can with whatever he can. He gives me everything I need. He can be so sweet yet isn’t afraid to tell me I’m wrong. He listens, he talks, he gives me more than he even knows. He points out the clouds to me when I don’t seem to notice, he reminds me of things that I sometimes forget. I love you chad. Thank you for everything, for loving me for me…