Living on...blessed time.

 Living on borrowed blessed time. 

 

Recently we had Peter’s six month check up with his Batten Specialist team at Nationwide.   Peter enjoys this appointment because he gets to prove how fast and smart he is.  During the 3 hour appointment Peter is seen by our neurologist, a social worker, an occupational therapist, speech therapist, physical therapist, and a psychologist.  Everyone except for the social worker has a variety of tasks, tests, or measures that Peter has to do in order to document how he is doing and how much he is progressing.  While Peter is doing his tasks Joe and I are answering questions and talking with his team about how he is doing and what we are seeing.  We are very blessed that we are able to have all of these happen in one appointment instead of having to do them each individually.  Peter also loves this appointment because he gets a sushi date afterwards.  

 

We are happy to report that Peter remains stable in all the areas he was tested.  He does have some behavioral and sensory issues, which we discussed with the team.  He has an upcoming appointment with an eye doctor at Nationwide who has had other Batten’s patients.   He is not showing any signs of seizure activity and he did not show decline in his cognitive ability.  We are thankful for this. 

 

We had an IEP meeting with Peter’s school team this month.  The main topic was the transition from 3^rd to 4^thgrade which involves a change in buildings and staff.   Peter continues to do well in school, staying with his peers in everything except for reading and he is working towards being able to read braille.  He has an amazing team behind who help him to be able to learn, grow and succeed and we are very thankful for them.  

 

I will be honest I often feel like we are living on borrowed time before the next decline in Peter’s health.  While we were driving home from the appointment with Peter engaged in an audiobook Joe and I were talking about the appointment and the upcoming trial.  I expressed that I felt like we were on borrowed time and through the conversation had a shift in thinking.  Instead of it being borrowed time maybe a change in perspective was in order.  What if instead, I thought of it as blessed time.   We are blessed to have this time with Peter when he is able to mostly function as a normal 8 year old.  None of us are guaranteed tomorrow or good health.  But we don’t usually spend our days waiting for something to decline in our health even though it could.  Worry doesn’t fix anything, in fact it mostly makes things worse.  So I am trying hard to live on blessed time and focus on the joys of each day.   Our faith, our family and friends, our church, and community help to make that possible.  Thank you to each of you for your support, your prayers and for walking with us through this journey with Peter.  We are hopeful about the upcoming trial and trying to enjoy as much blessed time as a family as we can.  

 

Today whatever you are facing, consider how God may be able to provide a change in perspective to allow you to choose joy and have peace.