Hope

Some time ago I sat with a couple of hundred parents in the school bleachers, enjoying our school band concert. The tambourine player caught my full attention.  He was significantly dependent on help from another student and was mobile in his electric wheelchair.  His participation in the band made the evening for me.  I was hopeful.  Hopeful that there might be room in the orchestra of life for us all.  Hopeful even for my kids who have more invisible challenges and cannot as easily sit with another helping.  Hopeful that we can be ourselves and still be involved.  Hope for the boy's healing did not cross my mind that evening.  I was actually delighting in him just as he is.  His presence as a person with a significant disability was what actually gave me hope.  I am sure his parents have hoped for his healing and for his increased function many times through his life.  But from my perspective that evening that was not my focus at all.

Hope is one of the foundations of my being. As life has gone on, I have also realized that unrealistic hope can be very destructive and can prevent me from enjoying life just as it is.  Recently someone spoke of almost guaranteed hope from a method of relating to our children.  If only we could wash off some of the debris and start again and focus on the heart of our children, we can have hope.  I really should have asked what was meant by hope.  Probably any glimmer of improved communication was the hope promised.  Nevertheless, as a conscientious and determined parent, I immediately felt the guilt emerging from a promise of hope.  I was hoping for healing and positive behaviour for my children just like I am sure the parents of the boy with the tambourine  have often hoped for improved motor function for him.   With our children there is often not the option to wash away the wounds and start again.  Many of them have irreversible brain injury.  It is true that neurons do make links for our lifetime, and that improvement is always possible. I want to be ever positive and hopeful. But I have to also be realistic for both my own sake and the sake of my children.

Hope is possible.  Reframe the hope.  Be creative in hope.  Sure we can hope for cure.  Some people are cured of their disabilities and diseases.  The majority are not.  Still they can hope.  Hope to be included.  Hope to make a difference.  Hope to show perserverance through the struggle.  Hope that our children will even bring joy and learning and hope for others through their very being just as they are.  May we somehow realize some personal truth that is often in weakness that there is strength.

With our kids it may not be hope for cure or even for improved behaviour.  Even with the best parenting there still will be kids unable to live with their families.  One of the families that for me is the most inspiring and full of hope includes a son who is often in and out of jail.   He really is trying.  He  is not able to get a lot of important connections in life.  His perserverance and that of his family gives me hope.   Like the boy in the wheelchair, see the hope and possibilities within the significant limitations.  Try to see the hope and growth for ourselves and for others through our own disappointments and perceived failures.  Through it all, be creative and expansive in our perspective of hope.