Abdullah's Story: Reflections

My faith as a Muslim teaches that with every difficulty there is relief. 

Of course I am not denying the challenges and pain that come with his condition but with it has come a plethora of relief, joy and learning. I have learnt far more about what it means to be human, to love and to be loved from Abdullah than I have from any other person I’ve met. He is so aware, so present, so connected to the world around him. He takes such pure joy from birdsong and having his family around him. He feels the crash of stress in a room as though a bulldozer has entered it, forcing us to check ourselves and enliven our thoughts. He teaches us to focus on our great gifts and purpose in life and not become so worried, so distracted and so pained by all the little things we can often get so caught up in. There is no time for ifs. Our purpose can only be truly fulfilled in the present moment.

I have learnt that our abilities to walk, talk and learn are gifts that do not necessitate goodness or success in life. That actually, if we do not use our unique gifts, whatever they may be, to positively connect with those around us, to spread mercy and demand peace, then they are wasted and we will feel our spirits wasting away as a result.

I have strengthened relationships with people who I never thought I could be so close to, or would plant their feet so firmly beside me in my greatest times of need. I have met carers, nurses, doctors, play workers, pharmacists, occupational therapists, physiotherapists, cleaners, delivery drivers and many more whose hearts are so fiercely committed to making every second of my son’s and my family’s lives precious and valued that I cannot possibly ever feel alone.

I have met incredible parents of complex needs children within those walls of Paediatric Intensive Care who march through life painting flower gardens and battle trenches whenever they are needed so they can bring joy to their children and fight for them without second thought. I have been blown away by the hope, determination and complete investment of siblings in loving their complex needs brothers and sisters without a care in the world for all the challenges that come with their conditions and the limitations we as adults so often focus on. 

I could go on and on and on. But the bottom line of what I am trying to say is that having any child in our lives, as parents, family or otherwise is a privilege which should be seized with determined hope and gratitude.

What is the saying?

Hear the thunder and then feel the blessings rain down.

Molybdenum Co Factor Deficiency was our thunder, but we wouldn’t for a second lament the countless blessings our Abdullah and his reality have brought to us and all those who love him and care for him.