Aj is my grandson and 8 years old ( 9 in November ). Since around Easter this year, his face has distorted and no matter what the doctors do or try, it doesn’t seem to work to fix this or normalise his little face. He has undergone procedure after procedure and we walk into each hoping…. and a few weeks later it is the same again.
There is the stress and wonder and worry. The questions over why and what causes this or caused this? Underlying is the worry about what if all that is being tried doesn’t work. Or if they do the most dire surgery and it still comes back. We all ahve these thoughts. We all wrestle with these angels. We do not speak them to each other. If we do, we are all conscious to think hope and speak it to buoy each other up.
Right now I am grateful for every moment we all have together. I am grateful for this family who loves and supports each other and who pull together in a crisis. I am grateful for the twitchiness that makes it impossible for us to be anywhere else when things of this sort shatter our little worlds.
I am inordinately proud of each of these and of a brave little 8/9 year old who despite pain says he has no pain when doctor’s ask him ( even though he flinches when gently touched).