My life feels like a game of hopscotch. We’ve marked out the squares; we’ve selected our stones, we have each other and we’re ready to go. We stand on the semi-circle labeled ‘START’ and position ourselves for the throw. Beyond the numbers 7 and 8, we can see the goal. The goal is ‘HOME’ but the game doesn’t really finish there. We know the rules. First we must get the stone to land firmly in the first square and to finish the round we must balance, jump and hop our way back to the start. If we succeed in doing so (without touching the line when we pick up our stone) we will be privileged to move to the second square.
So far over the last two months we have only completed one round of this awful protocol of High Risk chemotherapy. We have been to the START point a few times. We have waited our turn. But this week, like last week, we’ve had to go back to the START to try again. When the counts are too low it means that Sam’s body has not become strong enough for another round of chemotherapy. There are certain levels that they need to check and without those levels being high enough we have to go home and return to try again. Trying again will mean blood tests every second day and maybe transfusions or maybe a drug known as GCSF will be injected into her tummy.
Trying again has its advantages. We take delight in going home. We enjoy the warmth of the heater, the luxury of home cooked meals; we are satiated with the fine brew of the local barista. We prefer days of blood tests and transfusions to days of chemotherapy and its side effects. We prefer days of chemotherapy to days of lumbar punctures, bone marrow biopsy’s and the claustrophobic machines of nuclear medicine. It is all relative I suppose and there are days when I wonder if I will ever complain about simple things again.
Tomorrow is our third attempt to get our stone to land on square 2 and after that square we will have 4 more squares to successfully land on. It is still a long journey in front of us and everyday is unpredictable. Sometimes Sam needs a platelets transfusion, or haemoglobin, or fresh frozen plasma. Every time Sam receives a transfusion we are grateful for the work of the Red Cross. Blood transfusions are keeping my daughter alive. My thoughts are unable to fully digest that fact.
Every now and then I find a hole in my belly where my courage used to be. On nights like these, on the eve of that potential ‘re-entry’ day, it hollows out. It takes such an effort to pack, to load up the car, to take the journey, to keep on smiling. I feel like the busy little toddler in A.A. Milne’s poem Busy.
It goes like this:
And round about
And round about I go—
All round the table,
The table in the nursery—
And round about
And round about I go;
I think I am a Traveller escaping from a Bear;
I think I am an Elephant,
Behind another Elephant
Behind another Elephant who isn’t really there …
And round about and round about
And round about
And round about
I think I am a Ticket Man who’s selling tickets-please,
I think I am a Doctor who is visiting a Sneeze;
Perhaps I’m just a Nanny who is walking with a pram
I’m feeling rather funny and I don’t know what I am
The poems and games of my childhood provide light relief to this otherwise impossible path. I feel foolish sometimes as I enter the world of my childlike faith but my Father in Heaven reminds me of the story in Mark 10:13-15 (Amplified Bible)And they kept bringing young children to Him that He might touch them, and the disciples were reproving them [for it].But when Jesus saw [it], He was indignant and pained and said to them, Allow the children to come to Me, do not forbid or prevent or hinder them, for to such belongs the kingdom of God. Truly I tell you, whoever does not receive and accept and welcome the kingdom of God like a little child [does] positively shall not enter it at all
And so I come as a child and I lay my life again at His feet. I do not know what tomorrow will bring.
At times I don’t even know anymore who I am. I have lost my identity. I no longer pastor a church. I no longer teach Kindergarten. So my identity is not in my career.
I am rarely home to cook, or to clean, or supervise homework so I hardly can rate myself as a homemaker.
Even in hospital I feel at the mercy of the nurses and doctors who know better than me about my daughter’s condition.
Date nights with Reid are almost a thing of the past, or at least a chapter of another season.
I like what Rick Warren (author of The Purpose Driven Life) says “God is more interested in your character than your comfort. God is more interested in making your life holy than He is making your life happy. God didn’t put me on the earth just to fulfil a to-do list. He is more interested in what I am than what I do.” Therefore, through all of this I seek to find my identity in Him.
“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me”.
Some days I die a better death than others.
Today I nearly went insane. The list of things to do before our return overwhelmed me. I lost my patience.
My Sam looks so incredibly beautiful that I forget she can hardly keep up with me. I am used to her being independent. I am not used to being needed like this. I graduated from the baby stage, the toddler stage, the primary school stage and almost (Jack is in Year 9) the high school stage of parenting. Just like it was in the beginning, just like the game of hopscotch, I am at the START plate throwing my stone.
I kiss her precious balding head when I turn out the lights and give her the last sip of water for the day, from her cup. I sit beside her praying the prayers of her childhood. I rehearse the prayer I taught her when she was two adapted from Proverbs 3. “When I lie down my dreams will be sweet, when I lie down, I will not be afraid. And the Lord will be my confidence.” As I pray it I can hear her voice from years ago reciting it back to me line by line.
This is the way we taught our children to know that their strength was in Him. Eventually they discovered Jesus for themselves. For this I am grateful. When I read Sam and Emma’s blogs, when we talk together, when I see Jack worship God I am so grateful that there lives are in His hands. That He knows them and that they know Him. I know I am only responsible for them for a borrowed season. I pray that I do it well and make God proud.