Mark turned sixty on Saturday and our kids and some of our friends brought the party to us. Chad was able to come home from Dallas for a long weekend and Corey had been home the weekend before to celebrate Ashley, Harrison and Mark’s birthdays.
Before Mark’s party started our kids all came together in our living room, with Corey tuning in from San Francisco via FaceTime, to present this beautiful video that they made for him.
Lately I’ve had trouble emptying my bladder and I’ve been worried about it even though it wasn’t causing me discomfort. (I’m telling you about my peeing problem because the solution is so common-sense and easy that it may help you someday). Last Sunday our friends Joe and Sheila were visiting. Joe is a well-respected urologist in Muskegon so I thought I would ask him about my bladder problem. Joe explained that if we don’t empty our bladder each time we urinate, the leftover urine may harbor bacteria that could eventually lead to a urinary tract infection or having to get a catheter. He explained that as the muscles in my stomach get weaker it will get more difficult to push the urine out so he suggested that we try a simple procedure to see if it works. He told Mark to put a couple fingers on my lower belly and as soon as I start to urinate apply some pressure on my bladder until it is empty. This simple procedure worked great. Thank you, Dr. Salisz. Hopefully I will stay infection free for awhile.
ALS doesn’t discriminate which muscles it attacks. Eventually it gets to all of them.
My arms and hands are no more than a decoration on my body now. They make life more difficult for anyone trying to dress me or put a coat on me. When Mark moves me he has to remember to bring my arms along otherwise they dangle and could get in the way. If he rolls me on my side when we go to bed he has to remember to bring my arms in front of me because they won’t move on their own. It’s strange to think that we need to say, “Don’t forget about my arms and my hands.”
I can still feel hot and cold and someone’s touch. It seems strange to me that I never have an urge to move my arms. Even if I concentrate on moving my arms and fingers I still have no urge. It’s almost as if they were never part of my body at all.
Dear Harrison,
You light up our life, you blue-eyed baby boy. The second you walk through our door and let out your excited screech you make us feel like we are the most important people in your world. You were born at a perfect time in our life because Grandpa and I have a lot of free time to watch your robust and delightful personality come alive. You are so adorable. This past year you’ve entertained us with your nuggles, giggles and sweet sounds. You learned to walk at eleven months and you are trying hard to talk. Every day you amaze us.
You and Grandpa have a very strong bond. When I watch you two together it warms my heart because Grandpa is in his glory, especially while you sit quietly on his lap as he reads you a story. For some reason Grandpa can get you to slow down and sit quiet as a mouse. One day Grandpa was pushing me in my wheelchair and he laid you on top of me so you were staring up at the ceiling. You laid so still that grandpa started pushing us from room to room showing you the pictures on our walls and you continued to lie still so Grandpa kept going for about ten minutes and then we heard a sweet snoring sound and you were sleeping. Ever since that day every time we do this you lie unbelievably still for a busy one-year-old. You even do the motor sound just like Grandpa. I think this is my favorite thing to do with you.
We love you so much, Harrison.
Grandpa and Grandma
Twenty years ago our family welcomed into our home a beautiful fifteen-year-old exchange student from Brazil named Thais. Her parents, Antonio and Inês, trusted us to take care of their daughter for a year. A few months later they invited Chad, age sixteen, to live with them in Brazil for seven mouths. We learned so much from Thais’ parents because in the beginning Thais was very homesick and wanted to go home, but her parents were very patient and lovingly talked her through it. From that experience Mark and I learned that homesickness wasn’t terminal and if we could be patient and brave like Thais’ family we might be able to see the beauty of the exchange unfold. This past weekend Thais, her two little boys Joau and Pedro and her parents came to visit. This was the first time we met two-year-old Pedro and the first time they met Harrison. Before they left I asked to hold Inês’ hand. Even though Inês and I don’t speak the same language, words were not necessary because we shared a son and a daughter. We saw the true beauty of the exchange unfold.
Live Simple, Love Like Crazy 