A Walk for Hope

The Huntington’s Disease Team Hope Walk was yesterday, the 21^st. We had a good turn out and had a good time. After things wrapped up at the park, we adjourned to Zupa’s for lunch and conversation. It was a lot of fun to spend some time with family we don't get to see nearly often enough.

Participants from Team Maughan were Me, Kyle, Mom, Dad, Marlee, Tom, Marijka, Susan, Ted, MaryAnn, Kim, Ellie, June, Jessica, Josh, Jenny, Preston, Garrett, Brooke, and Alexa. For our first year, I was thrilled with the support we received. Our team raised almost $300 and donated a BYU themed Scentsy basked to the bucket raffle. Thank you to all of you who helped us out. Now we know what to expect we can do more for next year. So keep in mind what you could make or donate for the silent auction or bucket raffle.

Kyle's Health Update

We saw another doctor yesterday about Kyle’s feet. He agrees with us that we want to put off surgery as long as possible. With Kyle’s health problems, there is a big risk of infection and a chance he won’t heal. Right now, the Charcot Arthropathy is very active in both of Kyle’s feet. The bones are breaking down. The x-rays were unbelievable. All the bones that connect his toes to the rest of his foot have crumbled on the left foot. They have partially crumbled in the right foot. The bones that keep the foot straight have collapsed on the left foot. We suspected that because his foot is bowing downward in the middle. I can’t believe Kyle doesn’t complain more. He has to be in constant pain.

The plan for right now is to try to get his feet stabilized. This means protecting Kyle’s feet from the outside so the bones can fuse. Therefore, Kyle is going back in the crow boot on his left foot as soon as we can get a new one made. He will also need to wear a walking boot on his right foot. The doctor wants Kyle in a wheelchair instead of walking. It was hard when he told Kyle he was giving him a prescription for a permanent wheelchair because he doesn’t see Kyle not needing it in the future. The worst thing for Kyle is this means no more working for a while. This will be great for our finances as well. 

Dr. Morgan wants us to go see a different doctor who can work better with our insurance because there may be surgery down the road. I guess our insurance doesn’t like the hospitals he works at. It happens to be the same doctor we already have an appointment with for another opinion so that worked out well. 

On another issue Kyle’s dermatologist removed a mole a month or so ago and it tested positive for Melanoma. So, on Monday she had to take out more, a lot more. Kyle now has a 2-inch (no exaggeration) incision along the top of his back. The skin she removed will be tested and then we will know if they need to do anything else. She thinks removing it will be all that needs done to take care of it. Let’s hope she is right.

9-11

Twelve years ago on September 11, I took the day off work to celebrate my 26th birthday. I was looking forward to sleeping in. Instead, I woke up to Janalee running into my bedroom yelling that we were under attack. It took me a few minutes to realize she wasn’t talking about us personally. She turned my television on just in time for us to watch the second plane hit the world trade center. I spent the rest of the day glued to the television watching the horrible images that filled the screen. It was so unreal.

That night my family and friends gathered in my front room for my “birthday party.” There wasn’t much celebrating as we all watched the television and prayed together for the victims. My birthday has never really been the same since then. I have a hard time feeling like celebrating on a day I know thousands of people’s lives were shattered. It was a horrible day. 

My birthday this year was thankfully very uneventful. I got home from work at 9:30 last night after a very long day. I sat in a conference all day and had a work dinner last night. Kyle had 2 dozen gorgeous red roses waiting for me, which was sweet. My awesome visiting teacher Michelle had been by and left me a bouquet of mixed flowers. I also had numerous texts and Facebook posts during the day from my family and friends. It was a nice calm day.

Leaves Are Changing Color

As September begins and the kids are back in school, the nights begin to get a tiny bit cooler and my thoughts turn to fall. I anxiously watch as the leaves begin to change. I wait to feel a morning chill in the air, and this morning it was there. It is my favorite time of the year.

Things I love about fall:

• Soft, cozy sweatshirts and comfy jeans 
• Thick warm socks and boots
• Hot chocolate 
• The chill in the air 
• UEA with the ladies 
• Deer camp 
• Horse riding in the mountains
• Walking through the crunchy leaves
• Carving pumpkins 
• Chili and cinnamon rolls 
• Lighting the fireplace 
• Cuddling under a pile of blankets 
• Watching the leaves change color
• Nice smelling Scentsy bars
• Caramel apples 
• Halloween 
• Warm apple cider 
• Thanksgiving

Grandpa LaMar

Yellowstone when I was 3 years old.

It's weird how reading certain things will bring back a long buried memory. Today I was reading on a blog about a little girl who collected rocks and suddenly as clear as could be I could picture my Grandpa LaMar's hand rubbing his worry rock. He had small smooth rock that he would rub. He told me it was his worry rock. I can't remember why but I assume that he rubbed it when he was worrying about something.

That memory led to a flood of others as I remember him rocking me in the rocking chair in our front room. I remember going to visit him at the liquor store where he was the manager and going up to his office. It was on a raised area in the middle of the store so he could keep an eye on what was going on down in the store below; then riding with him to drop off the deposit in the night drop at the bank.

I can clearly see him in my mind sitting in the recliner at his and Grandma's house. It was the last place I saw him before he died. A little while before he passed away Mom had to come get me from school because I was sick. Grandpa had come over to watch the kids so she could come and get me. I remember him pulling me onto his lap and rocking me in the rocking chair. He told me the best place to be when you are sick is at home.

He had a dry sense of humor. A few days before he died we were watching TV. A commercial come on and it announced, “The news has come out! There is a new bra!” Never taking his eyes from the TV and sounding completely serious Grandpa said, “That’s the greatest news I’ve heard in 60 years.” We laughed so hard.

I was only 10 when he died. It was way too soon to lose him. I don't think I realized it until today, but my Mom was only 31 when she lost him. I am 37 and I can't even imagine how hard it would be to lose one of my parents.

Team Maughan Walks for Hope

Team Maughan is participating in the Huntington's Disease Team Hope Walk on Saturday, September 21st. 

Fighting for a cure for Huntington's Disease is very dear and near to my heart. My Mom's cousin, Kathy, is fighting this devastating disease right now. She was diagnosed with having the Huntington's gene several years ago. At that time, it was a new disease that we had never heard of. Our whole family was devastated. 

My Mom and Kathy are double cousins and since if a parent has the disease then your child has a 50/50 percent chance of having it, we knew it could be in our family too. Kathy's mom and dad and my Mom's mom and dad have all passed away so we had no way of having any testing to know which side it came from. Susan remembered going with her Grandma Maughan up to visit her mom and remembered her just sitting in the dark with jerking movements, which we now assume was part of this disease, and so we decided it probably came through the Maughan side. We later learned that my Mom's cousin, Ronald Maughan, had the disease also. He just recently passed away because of it. So it was confirmed that it came from the Maughan side. 

Mom and my aunt have both been tested and their results came back negative. We don't think Grandma Ila showed the symptoms of the disease. Kathy's daughter, Jenny, took her into her home and provided her a safe and loving place to live for several years until just a few months ago when Kathy started falling and it was decided that she needed to have constant care. She is now living in the BeeHive Home in Logan where she has a beautiful room and they take great care of her.

Kathy is now having the jerking movements, choking, and trouble walking. It was explained to me once that Huntington's is a combination of Alheimer's, Parkinson's Disease and MS. All I know is it is a horrible disease that is eating away at Mom's cousin. She is constantly losing weight because of the choking and not being able to eat and I think she is also afraid to eat because of choking. Every time I see her, she has lost more weight and her clothes are hanging on her, even though Jenny tries to keep her in stylish clothes. 

If you are able, please donate to this important cause, any amount you can give would be appreciated. We need to make people aware of Huntington's disease and find the means to study and find some answers and in the end find a cure. We would also love to have you join our team if you can. Thank you for your help! 

Donate or Join Team Maughan: http://www.firstgiving.com/fundraiser/teammaughan

Please don't hesitate to spread the word and contact me for a flyer you can pass around.

IF YOU OWN OR KNOW OF A BUSINESS OR ORGANIZATION WHO WOULD LIKE THE OPPORTUNITY TO BE A SPONSOR PLEASE LEAVE A COMMENT AND I'LL GET IN TOUCH WITH YOU. 

If you have any questions please don't hesitate to contact me.

Inherently Lonely

I have a huge family and except for a few times in my youth when I would have given anything to make them all disappear, I wouldn’t have it any other way. If my immediate family can’t help me I have aunts, uncles, cousins, and all kinds of friends we have adopted into our family who would be there for me in a heartbeat. It’s an amazing feeling to know you have that kind of support system.

I imagine that because I have the wonderful family I do that’s why it makes it hard for me to comprehend what it would be like to have no family at all. We have a friend who for many, many years hasn’t had any family. That is hard for me to fathom. However, I guess if two only children with little family marry and have children who never marry and one of the children dies young then the surviving child would literally have no family, just as he does. Imagine not having one living relative. There are probably more people than I think who don’t have a family. Literally not having a family is different from choosing to distance yourself or break away from your family though. At least then, you know they are out there.

I would think that it would be very lonely to know that you are the only one of your family left. I imagine there were times when he was very lonely, but he never let it show around us. I watched as an amazing man created a family of his own. He has several “children”, “grandchildren”, and “great-grandchildren” who couldn’t have loved him more if they had been related by blood. He has formed relationships with people who love him as if he was their own flesh and blood.

My family has taught me that blood doesn’t matter. We officially in Marijka’s case, and unofficially in lots of cases adopt people into our family all the time. My parents have taught me that generosity is never ending. Therefore, if you or someone you know is looking for or in need of some unconditional love and acceptance just send them our way I’m sure my parents we will be happy to bring them into the Anderson fold.

How lucky am I to have been shown by two wonderful parents that kindness, service, and generosity are things that you should freely give. What wonderful examples they have always been and continue to be to me. I am very fortunate to be surrounded by people who care about me.