Sunday, December 30, 2012

I cannot believe it is the end 2012.  This has been an eventful year.  It honestly feels like 5 years have passed since William’s diagnosis instead of 7 months.  
We had the time of our lives this month in Orlando for our Make-a-wish trip.  We flew and visited all parks including  Disney World, Sea World and Universal.  We were going non-stop, and William was such a trooper!  He was always ready to go and take everything in.  It was a great family bonding experience that we will never forget, and we have tons of pictures to remind us as well.
We had a great Christmas and went to Macon and Columbus to see family. We want to make use of every opportunity we have to visit with family and let everyone see William.
Christmas or any holiday/birthday is hard for us because even though we try, we can’t help but think about next year and how our family will be faring.  It is also hard because we don’t fit into the normal mold. William doesn’t play with toys or understand a lot, and when people haven’t seen him or don’t know the full situation, it is hard to see their expressions.  He changes so much if you haven’t seen him in a month, he has, more than likely, lost a skill.  I would describe it as he is returning to infancy.  A baby grows and develops so much during the first year and gains so many skills.  Well, William is losing his skills as quickly as most children gain them. This is the most painful part of the disease as those who love him have to sit by and watch our highly spirited boy lose parts of his personality and motor skills.  Every step down or every skill lost triggers a grieving response.
It is really hard for anyone to understand what our lives are like on a daily basis unless they are living it. With this disease, it strips the child of every motor skill they have until they are just living in a vegetative state.  We may not have a lot now, but things will get worse, and we need to be grateful that William is still able to see a little and is still trying to walk.  We are also grateful for every smile he gives.
This has given new meaning to the expression, “Live life one day at time for tomorrow has enough troubles of its own.”  It is our motto and our goal.
I didn’t want this post to be a depressing one, but an honest one, and wanted to let you in on a little of what we are dealing with in the physical and emotional realm of this disease.

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