One Foot In Front of the Other

I was reading a post by Emily Rapp this week, and something she said resonated with me.  Her son suffers from Tay Sachs disease and is not expected to live much longer.  All of his young life (he is 3) she has been raging against this disease and has mourned the childhood he would never have and the life that will be cut short.  This week she wrote about "waiting for the other shoe to drop." The course of HD means that there will always be another shoe...another loss to expect.  Several shoes have dropped for us this year.  I have spent this last 18 months in a fog of sorrow and grief.  But this Christmas, and the joy it brought our family, gave me hope that there would be more milestones like this one.  We are changing and adapting to how HD has impacted who we are, and what we can do as a family. We went through the same kind of transformation when we adopted Lacy.   When we finally accepted the limitations we needed to impose to be able to function as a family, our out

We had a beautiful Christmas morning with Lacy at his home.  Several of the residents were there as were their caregivers.  We were all thankful for a hearty brunch and great fellowship. No, it was not the same kind of morning we have had in years past.  I'd have to say it was better. Our boy was quiet and happy.  He enjoyed the food and the time together.  We were blessed with an opportunity to share a wonderful day with wonderful people.  Lacy opened his gifts and was pleased with what he received.  What could be better? Smiles and hugs all around.  Thank You Lord for unexpected gifts of love and peace.  Thank You Lord for giving more than we can ever ask or think "and be doing that!"

One of Lacy's most memorable "sayings" was "and be doing that."  He would punctuate many statements with that phrase. "We will open presents and be doing that." "I will sing my praises to God and be doing that." Kenny and I have used these words a lot, as parents do when a child comes up with a particularly memorable turn of a phrase or jumbled word. I've asked myself over and over:  What does "and be doing that" really mean? It means we will be in the moment, giving ourselves totally to what we are doing.  It means we will be continuously in that frame of mind. Lacy has not used this phrase for a long time now.  His vocabulary has changed with many twists and turns that often don't make sense.  "Neologisms" (made up words) punctuate some of his speech now.  Still, I believe he is living "and be doing that" every day. Christmas Day is fast approaching.  We will be together, eating our Christm

This week there was a very informative and emotional segment on a news program we frequently watch at our house.  The program detailed the steps in leading patients through decisions on what types of interventions they do or do not want.  For those who have made the decision not to continue with treatment when their disease is at a stage where treatment is of no benefit,  an Advance Directive is a gift to families.   Eleven years ago, I sat with my parents as they went through the same type of conversation.  It was heart-wrenching then; an odd mix of triumph and resignation.  Kenny and I watched the same type of conversation unfold on our television set this week.  Of course, we had an emotional discussion ourselves after viewing the segment.  We will some day - sooner rather than later - have to have this same kind of conversation, but it will be about our son's wishes, and what we think will be best for him.   Our son is past the point where he can understand this disease