Ben Diagnosed with A-T & Bekah Showing Signs

This has been a really rough month. A couple of weeks ago we found out that Ben has a disease called Ataxia-Telangiectasia (A-T). It is a rare genetic disease where he is missing an important protein in his body.  This lack of protein will continue to destroy the cerebellum in his brain and affect his ability to write, read, swallow, and eventually walk. Most A-T children are in wheelchairs by age 10 and their life expectancy is late teens to early twenties. They can also have immune deficiencies and have a higher rate of cancer.

Any of our other children could have this disease also, but it is not very likely. None of our other children are showing classical symptoms, but each of them would have a 1 in four chance of having A-T.

This news has been very hard to digest. Most days I am fine, but sometimes I cry, and my heart aches for his future. He desires so much to become like his older brothers, and there may come a day where he will have to change his expectations, just as all of us will have to.

We invited all of Larry's brothers that were in town at the time (Leland, Lyle, Lynn, and Loren) to come over when we talked to the boys about Ben having this disease. We all cried as we discussed how this would affect Ben's life and all of our lives. Afterward, all of the brothers and Larry gave Ben a priesthood blessing and it ended up that all of us received priesthood blessings. For 1 1/2 hours, blessings were given and the spirit was there so strong. There was healing and spiritual strength gained. It was almost as if Ben's special spirit was sent to bring healing and peace to our family that could have come in no other way.

Tonight I sit in a hotel room in Logan, Utah bawling my eyes out. Larry's sister, Lucy, was kind enough to send us away for the weekend so that we could have time to get away from all of the stress and regroup. One of the things that has been really stressful to me is waiting for Bekah's test results. A few weeks ago, I noticed that she was just a little bit off in her balance, which had been my first indication that something was wrong with Ben. They have taken the blood-work to test her alpha-fetoprotein (AFP) levels to see if she also has A-T.

We have now been in our "little" farm house a little over two years and would really like to secure something bigger.  We would love to build, but are still financially unable to do so. Leland and Christine's house will be coming open soon and we are considering moving there. Once again, we have some big decisions to make.

I am also scared of having mental illness, especially Huntington's disease. My mood swings can be very severe and erratic at times. I feel sorry for those around me that have to deal with my mood swings, because the last thing I want to do is hurt others or make them have to deal with my problems. I don't know how else to be. I just go forward and do my best and try to change the things that I can.

I know that I have to go forward in faith, because nothing else but the gospel has made sense to me my whole life. I know that I have to go forward for my children, because I don't want them to have to suffer in the ways that I have suffered and continue to suffer because of my mother's poor choices.

It has been nice to just get away and have time to ourselves.  Some of the things that we have been able to do are attend the temple, go shopping, and play golf.

Move to Malad

Once again we have moved.  We were offered the job in Malad and we felt like it was the right thing to do.  We are in the process of purchasing 6 acres about 2 1/2 miles north of town.  The property has an old farmhouse on it that we are currently living in until we build a new house.  It has been a real challenge going from a large modern home to a tiny old home.  The new motto that I have tried to live by is, "Things are the way they are, and complaining doesn't help!"

We have been here now for almost 4 months.  People here have been very friendly and welcomed us within open arms, but the stress of moving and all of the change has been very stressful on our whole family.  The first two months the children and I lived with Aunt Christine while Larry spent most of his time trying to get our house ready.  Toward the end of the two months I became so stressed that I felt like I had to get away for a few days so I went to Erika's house. The first day I got there I broke out in a really bad case of the hives from all of the stress. I have often reflected on what the pioneers went through as they left their beautiful home in Nauvoo, leaving behind virtually all that they had and going forward in faith to the unknown.

When we first saw the house and property, my first reaction was an emphatic NO! The house was old and run down and there was still lots of junk on the property. The property had sat empty for 2+ years. When Larry first moved there, he spent the first few months trying to reclaim the house from the invasion of pack rats. I had never heard of such a thing. They look like a cross between a squirrel and a rat and they really do take your stuff and "pack" it away. The damage we have found so far has been a chewed-up sock, my night gown was shredded, and the baby's swing got chewed up by the little buggers. We have joked about the pack rats hoarding all of the stuff that we can't find!

Once of the biggest challenges we are currently facing is financially securing the property. Our plan was to sell both of our houses in Utah and pay cash for the property, but we ended up selling both of them by owner on five year contracts, so it will be awhile before we will get the cash. We thought we would be able to get a loan on this property, but it has proven to be a more challenging task than we had anticipated. The house is so old and in such disrepair that nobody wants to touch it. Therefore, we have spent most of our time trying to fix and repair things so that we can get a loan on it. We also have a time line to get something done so that we don't lose our home insurance.

Mom Moving To Provo/Contemplating Move to Malad

I just found out yesterday that Ann is moving my mom to Provo next month and that is very stressful to me. One thing that have have noticed lately is that I have been turning to food way too often to help with stress and depression.

Larry and I have been looking at investment properties to increase our income.  Three of them have fallen through for us now and we are starting to wonder if the Lords is trying to tell us something.  We both feel strongly that we need to do something different, but what?????

Yesterday, the thought of moving to Malad entertained our thoughts once again.  In some ways it makes so much sense--we could have free land to build on, we could sell both of our houses and build one and be completely out of debt, we could be there to help run the farm while Larry parent's went on their mission, and this is the year that the present high school auto shop teacher will be retiring and Larry would be perfect for the job.

I am just sick inside about the thought of leaving Spanish Fork and moving again.  I have really learned to love it here and we have made so many good friends.  Just the thought of starting over again makes me want to throw up.  I feel very torn.   I have also thoroughly enjoyed my friendship with Erika and her family and I would be very sad to leave that, but I also know that we have family in Malad that I would enjoy being around.

Larry reminded me last night that we need to make sure that our lamps are full as we make these very difficult decisions.  I feel very compelled to pray and read the words of the prophets as I know that these are decisions that we need inspiration to make.