Day 117 – Grayson’s Condition

Dear family and friends,

What a difference a day (or a week) makes. Last weekend Grayson was primarily non-verbal. At best answering questions in one or two word responses. Today he was quite animated and verbal. When we arrived he hugged us enthusiastically with a big grin on his face. In response to the question, "How was your day", however, he responded, "Not good. They are trying to give me medicine that is not good for me." He was convinced the second medication the staff was trying to give him was poison. We had walked right into a stand-off.

At this point my parenting instincts kicked in and Grayson and I had a nice talk. I acknowledged that it was his choice to take the medication or not and that the staff was trying to give him good medicine. He did not agree. I explained it was a good medicine for his heart. He still refused to take it. I asked if he remembered his two prior cardiac doctors. He did. I asked if he thought they were good doctors who wanted him to be healthy. He agreed. I explained that his good doctors had talked to his current doctors and they all agreed this medication was good for him. He thought that was good. I asked him if he wanted to take the medication now or in two minutes. He said he would take it now. And he did.

I share this story with you because it illustrates how we are learning a new way to communicate with Grayson. Slowly, deliberately, and simply. Small increments at a time. Navigating putting clean sheets on his bed and preparing dinner were handled similarly. We treated him with respect, gave him choices, and praised him for cooperation.

The pace of life with Grayson is much different than before. That's not all bad. Every conversation is focused and careful. That's not all bad either. What we are learning is to appreciate each moment we are together. Sometimes it is hard not to focus on how much we miss the former dynamic we shared together. The fast moving, complex, deep conversations about a myriad of subjects. But with all honesty I can say he is still Grayson. Still an affectionate, kind, and gentle young man blessed with a sense humor.

I told you four months ago that we gave Grayson completely to God and that we were grateful for getting him back a tiny bit at a time. As then, we have no expectation of where this journey will take us. We do know, however, that we embark on the journey willingly and with open hearts. We have much to learn about what "new normal" is for us all and we thank God for the opportunity to share life together.

Grace and peace to each of you.

Regina