This is your life....

A: "So what's it like?"

B: "You know the cliche a 'rollercoaster ride'?"

A: "Yeah. And emotionally?" 

B: "There were tears at first, couldn't talk much at all. Then numbness, then tears when people said nice things, like 'we're praying for you' or 'we love you guys'. But there were times of resolve too, of some unrecognised inner strength, where other people cried more then we did. I was also numb too, and often just flat and down with no tears. Was hard seeing him lose his hair." 

A: "I guess that was a visual reminder of what was happening in his body, right?" 

B: "Yeah, and the irony was I've always wanted to cut his hair!"

A: "What do you feel now?" 

B: "I don't know, it's a strange in-between feeling... kind of numb and sad, but don't feel like crying. Only days ago I felt immense joy. Since the steroids are gone, over the last week there has been so much joy in him, and it's contagious. His laughter lights up the home, his joy is a salve for the soul. He blesses everyone with his happiness."

A: "I'm smiling thinking about it." 

B: "He's cheeky too, making faces, and a whole repertoire of smiles, most of which break into laughter. I think it was his joy that helped us through the dark time of his colic year as a baby." 

A: "And helping you now!" 

B: "I guess he doesn't really know what to feel either - he's too young. He just cruises on, responding as only he can to whatever they throw at him. I think he's adjusted better then we have. We have to keep checking ourselves and think 'so this is what our lives are like now, our son has leukaemia and he's got to get through horrible chemo'."  

A: "And how did you take the latest news, the bad recent MRD results?"

B: "I thought I'd be more upset. But maybe my lack of medical knowledge (compared to Emily) prevented me fully understanding the impact of the news. Or maybe God has given me some inner strength to support my family during this journey. Or maybe more increased doses and number of chemo agents, in my mind, doesn't differ from the chemo he's already getting. It's horrible, but I know it will cure him. God made me an optimist, maybe even an idealist. Maybe I have too much hope. But I have to believe that He will take us through this.

You know sometimes I worry that I'm not allowed to show joy and happiness because my son has leukaemia."

A: "But people grieve differently... You're at the epi-centre, you travel right there beside your son, you experience his daily joy and tears. Others are more removed, or they have different ways of relating to this tragedy and contextualising his suffering."

B: "I guess there are practical responses too, people cope better if they can help."

A: "You've been so blessed with help and support." 

B: "I know! Although I wish I could get help with things that can't really be given. I often wish sleep could be given in units, so that I could be given enough to get up every night to Ned, and to get up early so that my pregnant, stressed wife could sleep in every morning. With enough sleep, I could be more selfless - I feel could serve my family better."


A: "So this is your life now..." 

B: "And I'm living it one minute at a time..."