Showing posts from November, 2011

More life lessons

As Kenny and I talked yesterday, more life lessons emerged in our conversation.  Here are a few:

Lesson 5:  Seek God and expect to hear His voice.  Each advent season Kenny, Alan, and I shared special devotional times around the table, celebrating the Christmas season.  One particular year, the book we were using suggested that everyone ask God to give us a special scripture or thought concerning His power in our lives.  We all bowed our heads and were silent for a few minutes.  I honestly can't remember what Kenny and I shared, since it paled in comparison to what Alan spoke.  Looking up with a big smile he said, "God told me I have a crippled heart.  But He will heal it."  We were humbled, realizing that that was the true meaning behind the Christmas season - God healing a crippled world.

Lesson 6:  When you worship, sing with all your might, and don't worry about your voice or if you can carry a tune.  Alan has memorized hundreds of worship songs, and frequently s…

What my son has taught me.

I am so thankful to have had the privilege of parenting Alan, and I know that my husband feels the same.  Throughout the years, Alan has taught us a lot about life and how to live it with joy and hope.  So I thought I would just list a few of the "life lessons" we have learned from our son.

Lesson 1:  Show your happiness at every opportunity.  Alan never failed to express happiness in a situation or with family and friends.  Those who know him will instantly get a picture in their minds of him rubbing his hands together and grinning from ear to ear.  His joy has always been infectious, and gave us all something to smile about.

Lesson 2:  Learn something new every day, and always take time to share your knowledge with others.  Alan's famous conversation starter is "Did you know...?" and everyone knew we'd hear something amazing like the date that his favorite magazine was first published, or the publication date and writer of his favorite worship song.


Testing and Resources for Patients

A diagnosis of Huntington’s disease is life-changing.  Because there is no cure, and the disease cannot be stopped or slowed down, there is a relentless march toward the inevitable end:  the person with Huntington’s will eventually be totally disabled and will die from complications of the disease process.
We adopted our son knowing that he had a 50/50 chance of inheriting the fatal gene.  After consulting with doctors we decided not to have him tested as a child.    I think that was the right decision.  We pushed Alan to achieve far beyond what was expected of him.  Honestly, we put the possibility of Huntington’s out of our minds and thought very little about testing until we began to see signs that something was not right. 
In all the literature I have read, most experts agree that this is the best course for children who are living at risk.  It is unnecessary to burden a child with the sure knowledge that he or she will develop this cruel disease.   As adults, they can choose to…


It is during the holidays that we feel our losses most keenly.  Perhaps it is the expectation that everyone will unite and a spirit of peace and togetherness will cover all the ills of the year in the past.  Perhaps it is that everyone expects some kind of inner transformation to take place at that time, when we appreciate what we have and look forward to a future year with eagerness.

We lost my Dad 10 years ago on November 24.  This year, that was Thanksgiving Day, and his absence was felt by all of us.  Dad was a great man, with an almost encyclopedic memory for jokes.  I have never met anyone who could tell a joke like my dad, nor anyone who had a joke for almost any occasion and any subject.  He was also a loving, devoted husband and father.  We were blessed to have had him in our lives.

Alan's illness makes all of us a little more sober this year.  He is distant from us, yet with us.  His suffering tempers all our celebrations.

Alan has always looked forward to family gatheri…


Our Thanksgiving with family has come and gone.  Alan is back at his apartment now.  I left him there, and waved goodbye, although he did not acknowledge me at all.

Alan was able to stay with us for two days and two nights.  We picked him up from his apartment on Wednesday afternoon.  He was suspicious of us right away so we promised him a milkshake.  We got to the house and he walked in with just his drink.  He had nothing with him - I had purchased clothes for him earlier that day so that we wouldn't have to pack anything.

From the beginning he was desperate to go back to his apartment, trying to get out of the doors, yelling at us, begging us to take him back.  He threatened to go to the police and have us arrested.  Kenny and I took turns keeping watch during the night.  We had to be ready at a moment's notice to block his access to the outside doors.  His desperation came in waves.  Alan would be calm for a few moments, then he would begin to become agitated, and start …

The sum of things

Right now, I feel like Inigo Montoya, one of the characters in the movie "The Princess Bride." As he said, "Let me, there is too much, let me sum up."

We spent the weekend in ICU with Alan.

Saturday, Alan had a grand mal seizure and fell at his group home. His care staff stayed calm and cool, called the ambulance, then called us. We met them at the hospital where we found a agitated and belligerent Alan. He wanted to go home, even though he had cuts and abrasions on this face and was covered in blood. We found him surprisingly agile, wiggling away from the doctor as she tried to examine him. Discussions of how to calm him left us with little choice but to try medication to calm the storm in his mind and emotions. Kenny followed as Alan was taken to CT scan where he had another grand mal seizure. I was in the ER room when I heard the announcement about needing ativan in CT. I knew what that meant, and peered anxiously out the door down the ha…

An entirely different situation...

This diagnosis of Lacy's Huntington's Disease has turned me into a fountain of tears. I have been crying at the drop of a hat, crying at work, crying driving home, and crying on Thursday morning in my doctor's office. He listened and asked questions, offering sympathy and comfort. The words he said to me have been rolling around in my mind ever since.

"Everyone goes through times of grief and loss, but when something threatens the well-being of our children, that situation is entirely different."

When I have had quiet moments I have been thinking about what he said. Parents whose children are in peril are fierce indeed. My husband and I have sought out the help of anyone who could give it, left work at a moment's notice to attend to Lacy in a crisis, lost sleep, mourned together, refused to turn away from the task at hand.

I have watched my parents hold each other and sob when my sister was diagnosed with cancer. Their terror was palpable, but their r…

Thinking back with thankfulness

I think that it is easy, when you are in the midst of dealing with a terminal illness, to let your vision becomes so myopic you can't see anything but what is right in front of you. I often think of Alan in terms of how his health and thinking are being affected, or what doctor I need to see, or what medication I need to check out. Huntington's Disease brings out the frantic mama bear in me. I want to do what I can, more than I can. I lose sleep. I walk in a fog of pain and fear.

But today I stopped and thought back to that sweet little boy that we brought home 30 years ago. There are certain pictures that I see in my mind: the picture of him in that cute little suit I made for him. He was 4 and looked like an angel. The picture of the pensive little man on the day our adoption was made final. Remembering our trip to a zoo that same day. Alan with a wide satisfied grin right after his first (and it turns out only) successful part in a Christmas play.

I can almost t…

Developmental Delay, Autism, and Huntington's

Developmental delay and autism both present a major set of obstacles to overcome. A person is not as able to process information as quickly as someone else. The world is difficult to navigate for an autistic child. There are so many challenges to overcome.

In addition to these two challenges, we are now dealing with Huntington's Disease, and Alan, who is 33 is deteriorating at an alarming rate. He doesn't eat unless someone sits with him to encourage eating, can't follow many commands, cannot shower or shave without help, and can't understand why. He sits and cries because he is weak and feels that the people who care for him are somehow causing the weakness. We explain, but he looks at us blankly.

I am sure there are other families walking this road, and I hope we can find them at some point. No, it won't make the journey any less painful, but sharing the struggles will be helpful.


I finished the Hunger Games Trilogy today. The story did not end with a tidy bow wrapped around it. At the beginning of the books, the reader hopes for a triumphant ending, that evil is destroyed and goodness prevails. The ending was appropriate. Much was lost - many friends, family, security - some things and people endured, but not without scars. The measured happiness that marks the end of the books is tempered by sorrow and loss.

As I read these books, I could see some parallels to my life and the struggles my family is enduring right now. Seeing Alan being ravaged by Huntington's Disease is brutal. We would gladly sacrifice ourselves for his survival, but we haven't been given that choice. Instead, we are forced into battle with an enemy we cannot overcome. We can't look away - that would be even worse. We must find a way to walk through this and endure. I don't know how we'll do it, but I know the strength we need will be there as we struggle.

In ch…

"I will let him go."

When your child is diagnosed with a terminal illness, you start little collections. Pictures that document the way Alan was, the way he will never be again. The first outfit I made for Alan. Art work kept for years in a closet, now precious. Notes from school. His signature on a piece of paper. A cassette tape with his 4 year old voice calling out to me. I can hardly bear to listen to it now, and it may be unbearable later.

Today I added an article from the New York Times by the author Emily Rapp. Her 18 month old son is dying of Tay Sachs disease. I collected this article because one of the statements in her article made me catch my breath.

Here's what she said:

"What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go."