My mind is still filled with confusion over so many things. But during the last days I have found myself thinking over and again how the loss of one of my children, the loss of Kay, is truly the worst possible thing that could have happened to me. I don't mean this in some impersonal, philosophical way. I mean it in a personal, crushing, full-of-individual-meaning way.
Perhaps without realising it, I have always seen myself as a father, looked forward to being a father, enjoyed every second of being a father. In an implicit way, being a father has been my life's mission. Indeed, there have been many other things that have filled my life with meaning, such as running a business or flying, and there have been times when these things were in the foreground, when I would have told you that they were fundamental to my life. But when I look back, it's always been my kids who have meant everything to me.
When Lauren was a born I wanted to be involved right from the start, as if she were some new gadget that had been given to my wife. I bathed her, cleaned her, baby-sat her, looked after her when she was ill and played with her. I read the "Secret Life of the Unborn Child", I followed her development with fascinated, experimentally based interest and, when her mother walked out of the door and left us, I went from working 50 hours a week to 24 and completely turned my life upside-down to put Lauren at the centre of it. I fought tooth and nail to retain custody of Lauren in the divorce that followed and, in the end, I did.
Kay was born with a milk allergy which left her constantly screaming with tummy cramps. But it was about 5 months or so before we got that problem under control. In the meantime, when I came home from work, Marion would dump Kay into my arms and say, "Now it's your turn" and I would spend the rest of the evening and my share of the night massaging Kay's tummy and cuddling her to sleep. Then we found that Kay had a hip deformity which meant that her legs had to be kept in a special harness for six months or more. And then she got a nasty skin infection which was more or less the precursor to leukaemia.
In a way I never really minded all of these things - I was looking after my kids and there's nothing more satisfying than that. Of course, there was tension and worry and fear and all the usual standard operating concerns that such problems bring. But I never felt that I should have been doing something else, that I was being cheated out of MY life. Through all of this I knew that there's no higher calling than looking after your children.
(I will note here that I've not mentioned Natasha. That's because Natasha, from the moment she was born, has not caused us a single problem. She was the perfect baby, born to a family in leukaemia crisis. She slept through the night, almost from day one, and ever since she has never needed more than her fair share of attention and has frequently got on for long periods with much less than her fair share.)
In the course of the years people have said to me that they see me as a natural father. I couldn't comment, except to say that that doesn't seem to be much of a challenge - to my mind anyone can be a 'natural father', it's simply a question of love and applied learning. But looking back now, perhaps I can see what they mean: I love kids and I especially love MY kids and NOTHING, not one single thing, could be worse than losing one of them.
What they don't tell you about getting older is that your options shrink, that your life becomes cast in concrete and at some point you have to give up and simply accept what you have got. My life has become a fabric of responsibilities, commitments, dependencies and obligations to such an extent that there is no room left for alternatives without shattering that fabric. I despise people who fail to honour the fabric of their lives, who shatter that fabric for selfish ends.
I look at the mess that my life has become and some part of me yearns to do it all over again and to do it right this time. But I cannot become what I so despise and so I have to learn to accept that THIS IS IT. There's no going back, there's no changing facts, there are no viable alternatives. My family is broken, we're missing 20% of our substance and nothing will ever change that fact.
The worst thing that could happen to me, has happened to me and there is no escape.
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Rob, yes there is nothing worse. My heart aches unbearably when I let my mind go there for a nano-second. You have done so well, to come so far. We are very proud of all you've done to keep moving forward.
ReplyDeleteLove Ali x
Rob. I have always admired greatly your dedication to your children.i shall never forget the day that Guy told me I had lost my Grandaughter ( Lauren ) , because that was the way the law worked in the Netherlands. Your fight and resolve proved otherwise and she is such a lovely person because of your love. She knows how much you love her and one day you will be as proud of her ,as I am of you. Kay was a joy and the memories of that lovely girl will never fade. Natasha is bringing you the fulfilment of yours and Marion's love in her dedication to her sport and her academic prowess. The loss of Kay is an unending grief, but you still have a lot to look forward to and be proud of. All to the power of LOVE. Mum.XXXXX
ReplyDeleteKay's Dad,
ReplyDeleteThanks so much for keeping these blogs up. I spent a couple of hours reading through your stories... Kay's stories. I am training to be a medical social worker in oncology and I have found blogs from parents help me to understand the process better. Thank you so much for sharing all about Kay and your family. It has helped me, help others, who experience this leukemia/BMT journey.
Rob, life is so unfair. I too have lost a child. My son, my dear son who I still cannot wrap my mind around the fact that he is gone. He was so young. I understand the pain of learning to live with a broken heart, this is just the "new" us. Now we walk and live with a big hole in our hearts. You are right, nothing can be worse. Nothing. Something that you loved with your whole being was taken from you.
ReplyDeleteThank you for blogging and sharing your feelings. I am not alone.
There was a feature some time ago in Singapore local papers - a pair of brothers aged 7 and 9 was riding on a bicycle when a cement truck rolled them beneath its wheels. It was instant death for the elder boy, and the young one barely made it for the paramedics to arrive.
ReplyDeleteThe news featured their mother, still in her work uniform, fainting after unveiling the canvass over the boys’ bodies.
I can only imagine the aches you and Marion have had for the past years, as with the Singaporean mum featured on the papers, kneeling on the road, screaming in tears, and asking the boys to wake up.
I chanced upon Kay’s Leukaemia Blog last year. Your girl looks angelic. I can imagine her now sitting on the lap of our good God, without feeding tube, with long hair braided, laughing and carefree. Her drive and energy while being ill was remarkable. It is in your blog that I find strength to ride alongside with my husband, diagnosed with ALL in 2012.
Your blogs have given me much wisdom to deal with the disease, and I am sure it has made the same impact for others following your blogs.
I am glad that you continue to write, sharing your feelings – the good, the bad, and everything else. It’s not an easy task to face the grief hard-on. I had a tough time maintaining sanity while dealing with the disease, waking up each morning hoping that it's a dream.
There is no reset button to Life, unfortunately. Press on, sir, your tenacity and drive can tide your family through. Let you and your girls remember Kay with a smile, I think she would like that a lot better.
WJ (Singapore)