My brother-in-law will occasionally write an update on his current situation. This is his most recent letter that he put on FB.
This letter is to update everyone on my current situationand how I am doing. There have been a lot of people who have asked us what they can do to help us. There are a few things that you could do if you wanted to help. What we need help with is making meals, cleaning the house, taking care of the yards and helping keep an eye on the kids. I'd also like you to visit me and talk to me since I am losing the ability to speak. I am usually out of bed and in my wheelchair before 12pm. Anyone who wants to come visit, talk or help out could come at that time. Liz is my full-time caregiver and so she will be taking care of any of my needs. We would just like you to come visit and have a good time. My fellow officers could come visit me anytime on or off duty. If you are in the area and want to drop by for a random visit that would be fine as long as it is after 12pm.
Now to talk about my current physical condition. I can no longer move my body or limbs. I can only move my head to look around and control my wheelchair. My wheelchair is controlled by a special head rest that lets me drive around the house. My hands have curled up and are stiff and sensitive. In a sitting position I am having pain in my tailbone, since I am sitting 24/7. I sleep sitting up because I have a hard time breathing on my own on my back and side. I am using a bi-pap machine 12 hours a day to help give me the oxygen I need and to expel carbon dioxide. I can only talk in a whisper without my bi-pap machine. So when you come over and I need to talk I will be wearing a facial mask that attaches to my nose. This forces air down my nose, fills up my lungs with air and gives me the lung capacity to talk louder. So don't be alarmed if I look like Darth Vader or a storm trooper. My ankles swell up and my feet go numb frequently. My mother, sisters and a massage therapist comes over weekly to massage me to keep my blood flowing and to reduce pain. It is getting harder to chew and swallow and sometimes I will choke on food or water. So that is what's going on with my physically. The next step in the process will include a feeding tube and a ventilator, but that is not for awhile.
I am no longer working full-time for the City of Mesa as a Police Officer because I can no longer perform a service to the city. Since I am unable to talk clearly, my voice recognition software no longer works on my patrol laptop. So I can no longer work. I have about five months of donated time, so I will be collecting a paycheck for the next five months to support my family. The City of Mesa has done a great job looking after us and taking care of us. I have so many great friends who work for the Mesa Police Department and I am proud to call myself one of them. After my donated time runs out, we have not yet figured out what we will be doing for income. So naturally I am concerned about how I will be supporting my family and it constantly weighs on my mind. Since we are living in a rental house, we don't know how we will make the payment or where we will be living if we can't afford to live here anymore.
The kids just started school and have adjusted well to a new school, new ward and new house. They are making new friends every day. Bryce also just started pop warner football and plays offensive and defensive line, because he is 105 lbs. Bryce just started 4th grade and is starting to develop a strong type-A personality where he wants to be in charge of everything. Hyrum just started 2nd grade and has a unique personality and is very creative. He is a peacemaker and easily makes friends. Harley is 4 years old and we have a hard time keeping him quiet. He asks a hundred questions every day and is constantly on the move and teasing Bryan. Bryan is 2 years old and needs constant attention all the time because he does so well in getting into everything, making messes and causing problems. Mary is a very good baby. She sleeps through the night, is easy to take care of. Which is a great blessing because Liz has to put her down to help me and she is content to wait for her turn. She is very beautiful. She looks at me, smiles and coos at me all the time. Liz puts a pillow on my lap and I hold her in my arms this way. She has beautiful blue eyes which I believe will turn green as she gets older like her daddy. She has long strawberry blonde hair which stands up on the top of her head. The boys have adjusted to her very well and love to hold her. We have to keep an eye on Bryan because he loves to lay on her and kiss her face and point at her eyes and nose. Which is cute, but also scary because he doesn't understand that he is smashing her. She doesn't cry though. Maybe she doesn't mind. Liz's mom, Barbara, has been living with us on and off and comes to help when we need her. The kids love her and she keeps everybody in line and taken care of when we can't. We are so grateful for her. Our dogs are not as happy about the move because they were used to running around on 1.25 acres. They bark at everything that moves and it's driving me crazy.
That's pretty much the update on everything and now I'd just like to thank my family, relatives and friends who come over all the time to help us. We are very grateful for all of your thoughts and prayers on our behalf. We really appreciate everything that you do for us and we cherish your friendships. It is my goal to fight this disease and with the Lord's help, beat it. I want to be around as long as I can to be there for my wife, kids and family. It is my wish and dream just to be healthy and normal again. Never take that for granted. I hope to see you all soon and talk with you before my voice goes. God be with you till we meet again. And as my brother Mitchell would say, "God is my tower of strength." Take care.
Mark D. Kelly
4 years ago