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 been ripe enough to pick and eat.

Unlike in the Biblical Garden, God Himself asked us to taste that fruit recently. And just as in the Biblical garden, tasting that fruit has changed forever how we will live.

Here's how it happened. Alan had been having what his staff workers believed were mild seizures. We took him to a neurologist for testing, to see if he was indeed seizing, and if a change in medication was warranted. At the doctor's office, as I listed all the symptoms/behavior changes we had seen lately, a sudden clarity hit me. I'd put this possibility in the back of my mind for many years, but now I knew in an instant what I was looking at, praying that I was wrong.

The wheels of medicine grind slowly, especially when one has a disability. I voiced my suspicions to the doctor, and he agreed that specialized testing was in order. Of course, he referred us to another physician.

A month ago - has it been month? - we were told the results of that test. Alan is in the early stages of Huntington's Disease.

Huntington's is an inherited neurological disorder. Medications can treat symptoms, but the relentless course of the disease cannot be altered. So here we are.

Today, Alan is doing well on the new medication, and we are fortunate to have a doctor who is well-versed in treatment of Huntington's symptoms. This is uncharted territory, but we are putting one foot in front of the other. God has always been at our side. He has seen what the future holds and has gone before us. We are putting our trust in His wisdom and guidance. We have days of deep sadness, but today is bright. We are thankful for today.

I have included a link to the Huntington's national website on my list of links.

For anyone out there who is struggling with this disease, we are walking this path with you.

Comments

Popular posts from this blog

To my HD Facebook Friends

That Day...Edited!!

Countdown