Showing posts from August, 2011

"...You must decide what to do with the time you have left."

This morning, I watched the last hour or so of the movie "Lord of the Rings: The Fellowship of the Ring." I do love Tolkien's trilogy. Although he said often that he did not intend to write an allegory, I still see evidences of his faith throughout the books.

At the end of the movie, Frodo stands at the banks of a river, knowing he has to keep traveling on in order to destroy the ring. He weeps silently as he considers the ring, and we hear his thoughts as he wishes he had never been given the task of carrying the ring, as it has brought him much sorrow. He then hears Gandalf's voice (and I am paraphrasing) saying that his wishing that he had never been given the ring is shared among "...those who see such times. You must decide what to do with the time you have left."

I felt like Frodo this morning. I wish we had never heard of Huntington's Disease. I wish we did not have to watch as our son is slowly taken from us by bits and pieces. This i…

New Normal

Now that our son has been diagnosed with Huntington's Disease, we are trying to keep ourselves from looking for "new" symptoms. It is hard to do, since we know we will eventually see the signs that the disease is progressing. Saturday, we visited with Alan for quite a while, sitting in his apartment as we talked. We saw some subtle changes. The undulating 'chorea' movements were more pronounced in his body movements. We hear from the staff who work with him that he sometimes has difficulty walking, and we saw that ourselves when we took him out to eat on Sunday.

When I hear of these difficulties, or see the changes myself, it breaks my heart. I am praying that I will come to a point that I will not feel paralyzed with sadness, panic, fear, or anger. I am believing that this will become the new normal and that I will learn to accept the ups and downs of this diagnosis.

A tree grew in the garden...

I began writing this blog to document the journey of my family as we navigate the world of adult autism and developmental delay. I have written about Alan and his behavior struggles which have been causing him - and us - much difficulty in the last few years.

He is on a new medication now that regulates his outbursts. For the first time in years we are enjoying frequent and interesting conversations with our son. What a blessing that is to us.

We have lived this last 30 years in a sort of 'garden of eden' of our own. No, it is not perfect, but it is our place, sheltered from the world, where God has blessed us and protected us. We have had a limit to where we could go and what we could do, but that in itself has been a blessing.

Just as in the Garden in the Bible, a tree has been growing in our garden. I am going to call it the Tree of the Knowledge of Good and Evil, because that is what it has been. Fruit has been growing on that tree for years, but only now has it…