All of us have our own experiences which help define who we are and what keeps us trudging forward. Tonight for example, I found a quick solution so that my son, Michael, could work on the computer and drink from a lemonade bottle at the same time. He cannot lean forward as he cannot get back into position. The reason he cannot lean forward is that he had rods put into his back. First, I put a straw into the bottle and he was unable to reach it without leaning forward. So then I grab a long straw but it is too high. I cut the straw down… still it is not quite right. Finally I cut a hole in the side of the bottle near the neck and slid the straw into it. Improvising is always fascinating! Then I was free to cook dinner.
My view as mom/caretaker has left me with some very humorous memories. Oh yes, there have been some poignant moments, but it is the comical stories which surface. This specific category will have a little of both types of stories. My purpose is to let readers into our lives and to allow them to see us as an average family dealing with some unusual circumstances. I think we all know how to juggle. Ultimately, I hope to help others along my journey.
When my son was still ambulatory and a student at Redbank School, a comical incident happened one day. There was a boy in his class who really gave him a tough time and Michael was very shy and quiet. I think Michael encountered many problems because he had great difficulty walking from age eight until age ten. The kids knew he was different and maybe they were a little afraid. One day as I was busy helping Mike’s brother get ready for school, Mike was getting his backpack. It was not until he came home that he and JT were laughing about something. I asked them what was so funny. Mike admitted that he had taken an unsweetened square of baking chocolate from the fridge and had given it to the boy who was giving him a hard time. The boy was all excited that he was getting a piece of chocolate and took one bite and spit it out. I guess the look on his face was enough to make Mike laugh. The best part of the story is that they became fast friends after that.
When Mike received his first electric wheelchair, he had his first experience learning to walk our new dog, who was a cute little schnauzer named Schultzie. The following incident is a reason that seatbelts are so important for people using wheelchairs. I wrapped Schultzie’s leash around Mike’s hand and the dog pulled him out of his wheelchair, which had to immediately be turned to the “off”position. A car drove past and the drivers looked at us with horror, while I calmly picked Mike up off the pavement, brushed the dirt off his face as he looked at me with a disgusted look while my other son ran after the dog, and lifted Mike back into his wheelchair, making sure it was in the “off” position. I buckled his seatbelt, and wiped a few tears and exclaimed, “Ok, let’s try that again” We walked the dog some more and Mike complained that his leg hurt. I told him that he probably bruised it. It was not until later that evening, about six hours later, that I put him in bed , with his legs stretched outwards that he began to cry and complain of pain. I said to him that we probably should visit the ER at Maine Medical Center, as I anticipated that he broke some bone. I did not get “Mother of the Year Award” that night as we found out his leg was broken. A broken leg affects dressing, bathing and toileting… so the next few weeks were a little humorous. Mike was and still is a pretty good sport.
I try to get together with other moms from time to time whose sons have Muscular Dystrophy just to exchange ideas, solutions and to maintain support between all of us. One night in particular, I met my friend Rosa who has two sons with M.D. We were only 7 miles from my home when I received a call from my youngest son who was very upset. He was crying. My son, JT, was about twelve years old, two years younger than Mike. He was very upset so I told him to calm down, that it was alright whatever it was. He then tells me that he and Mike got into a fight and JT pulled on Mike’s shirt. Again, Mike’s seatbelt was not fastened. You guessed it… Mike landed on the floor. JT felt bad he had done this to his brother. I reassured JT that it was okay; that brothers usually fight…even if one was in a wheelchair. I told JT not to feel badly and to let me talk with Mike. JT brought the phone to Mike and held the phone for him. I asked Mike if he was okay and did he believe he broke any bones. He said he did not feel anything was broken. I said to try to relax and I would be right home. My friend Rosa is a wonderful friend. She said, “Suzan, I will go with you and then we can come back here later for coffee” I agreed and off we drove back to my house. I remember coming inside and seeing JT who I could tell felt badly, so I gave him a hug and off I went to Mike’s room. Mike was lying on the floor sort of twisted up and he had the most disgusted look on his face. All he could do was to lay there angry with no way to vent the anger except lay there and let it dissipate. I asked him if he was alright. Rosa helped as I got the Hoyer lift to get him off the floor and into his wheelchair again. I had both boys look at each other and say they were sorry and to move beyond what had happened. Fighting is all part of growing up now, isn’t it? Everything worked out well and we went back to North Windham for coffee. Motherhood…. I wouldn’t trade it for anything! They have sometimes taught me more than I have taught them.
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