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.
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