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).


14 comments on “Priorities

  1. Thanks Lu. We really need it right now.

  2. Just catching up…praying. Love you Maggs!

  3. Thanks Spoon. Gratefully received by us all at this end.

  4. I followed you from Bended Spoon’s page …

    Please know that I am praying.


  5. […] before you go please be sweet enough to say a thoughtful prayer to Aj, a brave 8 year-old boy, whose face has distorted and the doctor couldn’t normalize it yet. Prayer could heal and let […]

  6. Brave little boy. Praying for him and the rest of the family. Huggggs to him too.

  7. Thinking of you all and keeping you in my prayers. Hugs

  8. We have had a diagnosis which changes each time we talk with the medical staff as it doesn’t “act” or “react” the way they expect. being human, I suppose there will always be some things that is beyond knowledge or understanding. We research the medical terms they thrown down around AJ like something to encapsulate what this is, but the next time we see them, they name it something else. He is loved and he knows this. We will all walk this journey step by step with him. Would that I could take it from him myself.

  9. Thank you all for your continued thoughts and prayers. We value them all. As you can imagine all spare energy ( and even some we don’t have) goes into weathering this. If I appear quiet, it is simply because I cannot find the words or the energy, and everything I am and have is needed elsewhere.

  10. My heart is aching for all of you- but especially for little AJ. I know from my own son’s experiences how frightening it can feel when your body goes out of control. I am praying for him and for all of you as well. Please keep us informed how he (and you) are doing.

    Love and ((hugs)) Gina

  11. Thinking of you… I’m back in Sydney permanently now (working in Pyrmont) so if you have time to have a coffee with me sometime, or just need to talk, just call. Love Sammi

  12. Maggs, my grandson is 8 hrs old also and mynheart and thoughts are with you all especially your wee guy! Love hugs and prayers!

  13. Maggs, my heart is breaking for AJ, you, and the rest of the family. Please know that you are in my prayers and thoughts at all times. I am here for you my friend.

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