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This blog post originally appeared on our closed Facebook group, and has been re-posted publicly with the author’s permission. If you are interested in joining our closed Facebook group, please email us.

It is Saturday morning and I am reflecting on the last few days’ events. On Thursday at 13.30 the phone rang. When I saw the call was coming from the transplant clinic, I took a deep breath. I knew what this call was. I calmly went to Dylan’s room to tell him the news. I sat with him for about 10 minutes and we chatted about what we both felt and thought about what the next few hours would mean and how we were feeling. For me it was important to explain to Dylan that it was possible the liver was not suitable. I wanted to be optimistic and practical.

Arriving at the hospital was a strange feeling. It felt like there should have been a ceremony or some sort of fanfare. Yet it was just another ordinary day and another familiar hospital admission. We were introduced to a young lady also being admitted. She was going to receive kidneys and a pancreas. We were all ushered to the transient lounge and then to the ward.

Such a strange feeling. I felt a sense of excitement and hope mixed with fear and dread. On the one hand I was praying that this liver would be suitable. Dylan needs to be able to feel healthy and strong and have the chance to experience days with no pain no nausea no jaundice no itching. Yet I was also dreading the thought that it would be a match ’cause in the back of my mind, I always have this small sliver of hope that his liver will improve and he can keep his own liver. I don’t want my son operated on. I want him to keep his own liver. But I want him healthy. I want him strong. I know he is not living a quality life. A new liver offers this for him.

Somewhere in another hospital, there is a family grieving. A loved one lost. Lives changed forever. My hope and excitement come at a price to others and my heart is sore. What an amazing, selfless, incredible gift to be given. Such a sad/happy day.

Am I ready for this new chapter. Is Dylan ready. Will his body accept change. What lies ahead on this new path.

One lesson that I have learnt and continue to learn is coping with waiting. In my classroom, I am always telling my pupils to wait their turn. So Dylan and I wait for his turn. At first the waiting is unbearable. My brain works overtime my emotions overflow I am on super alert. The waiting is hard and seems to drag on and on. Yet as we wait, I have time. Time to think, time to feel, time to process. I have time. And as I use that time, I am able to think clearer, feel stronger, process better. I need the time and am grateful to have to wait yet waiting is still so hard.

And then the letdown, the disappointment and the relief. As we gather ourselves and make our way back home, I think about the day, I think about how I feel, how Dylan feels, how my family feels. At another hospital, there is still another family grieving. Lives changed forever and I think about them. Thank you for your gift and even though Dylan was not able to use it, other people were given a second chance. Thank you.

And so we wait again. This time with more knowledge, more experience. We have had a dress rehearsal. Maybe the next call will be the one, maybe not, but for now we wait.

The love, the care, the hope from my PSC family helps me get through. Helps me cope. Helps make this journey easier.

My prayer for us all is a cure. Together in the fight, whatever it takes.

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