Happy new year everybody. I hope you had a great holiday and your first week back wasn’t too onerous.
I had a good one myself, and saw a lot of my family, which is always nice. Jo and I are carrying on pretty much as normal at the moment, although we are talking about names and the usual conversations you can expect to have. At 24 weeks she is starting to show now, so its becoming pretty real and more immediate by the month.
We have also had a lot of support, nice messages and general questions, but one of these has stuck with me and I think I will address that today.
‘How do you feel about having a baby in light of your condition.’
Well now. I can’t say I haven’t been thinking about this myself before the question, but its a bit of a poser isn’t it? On the one hand I feel incredibly lucky that I will be able to share the starting of a new life, help to shape and care for something which is derived from our union and experience the joys of all their milestones I can. I think half the joy in a child is to see what they become, what they can be, and to witness all the little miracles of their various steps through the world. Whilst being tremendously terrified at all the risks they have to take to become adults. Risks you can shield them from and the ones you can’t. I wouldn’t miss this for the world.
Yet on the other hand I have a condition which is going to drastically shorten my life. I can take some comfort from the fact that I was diagnosed two and a half years ago and am still not needing treatment. I can also take comfort from the fact my white blood cell count has not drastically risen.
I never forget I have Cancer. I just don’t always have it on my mind. With sufficient time having passed you just get on with your day to day and month to month living. It is only when you are preparing to go for tests, or have to make a long term decision that it comes to mind in anything other than a slight abstraction. I’m sure if I was due some treatment it would change, but no one can think about something in as an intense a way as you do when you are first diagnosed. Honestly you wouldn’t be able to survive.
Which leads me to the question. How do I feel? Well I have a large lump of joy, apprehension and responsibility, which I’m sure is due every first time parent to be. I also have wistfulness, fear I won’t be around to see the child reach adulthood, and a certain anger that this could happen, an anger which rises and banks, but has never really gone away completely. Anyone could die in the first few years of their children’s life, but in my case its much more likely. I fool myself day to day that I will live forever, but when I am asked a fundamentally open ended question about how I feel about my condition and the future, I can’t shy away from the truth. I’m not that guy. I am likely to die before my child reaches their teenage years. I am almost certainly not going to live to see them as adults, starting their own family.
Has that stopped me planning a child, hell no, but does that mean I have put a burden on Jo which is unfair? Of course. I know its not my fault, but its there and I have. She will have to take over the burden when I die, where I can only carry half of it whilst I live. Also I have put a burden on my future child, and any others we choose to have. They could have to grow up without a father and that could happen to them at any age. It can happen to anyone, but with me, its much more likely. Without one of the two most important people in their life from that day forward they would have to come through all the trials life throws at them.
After I die they will have to ask questions like, what did Dad like to do? What would he have said to that? and worse of all, What was he like? They won’t know me as an adult, they won’t be able to relate to me on an equal level, and they will feel hard done by because of it. We only get an allotted time on this world, and I know that, but they are going to have to spend much of it without me.
Now the same goes for anyone. I know there are no shortage of people who lost their mother or father at an early age or indeed at any time. I also know it never gets easy. You want to hear their opinion on something, share things with them, enjoy them. But they aren’t there anymore. They will never be there again. They have left forever and you won’t hear the door go, or see them smiling at you again. That’s it. At the very most, and if you were lucky enough to know them in late childhood or older, what you have is a voice in your head that might sound a bit like them, which is really only you telling you what they would have said to cover the gaping absence.
This is the legacy which I am likely to leave my child. I can’t help it. Its not my fault. Its just the reality of the situation. I can’t get rid of what I have and at some point my card is going to be turned up and that will be that.
There is nothing we can do about that, all we can look at is our attitude until it does happen. What we can give in the time we do have. I chose and do choose to give guidance, unconditional love and as much of my time as I can. It doesn’t mean they won’t irritate me at times, or frustrate me, and likewise I them, but I can only do the best I can and try my hardest to be the best guide and support they could wish for.
I also plan to write a series of blogs for each of their birthdays. The one thing I am half way decent at, other than Sales, is getting my ideas down in words and I will use that, insufficient as words always are to express feelings and emotions. I want them to have a message every year, long after I am gone, to give them a little bit of my voice to go with the one they have to make up in their head. To explain to them, to apologies for not being there for them when they need it. For not being able to continue to give them advice, and more importantly love as they grow. It’s the least I can do. In many ways its all I can give after I am gone.
So to answer the question. I have thought about it. I know that nothing is forever and we all build temporary bulkheads against the night. That all we can do is light a fire and huddle round it because sooner or later that fire will go out and we will be left with only the dark, dragging us away from everything we knew and loved. I choose to make the most of the time and do my best to raise a child who I can be proud of, but much much more importantly one that can be proud of me, that knows me and can say after I am gone that they loved their dad, and that he was there for them as long as he could be, and even when he had gone he wanted them to do everything they hoped and dreamed off, and helped them to live the life they wanted. There is nothing I can do about dying. I will do, that’s it, but I’m going to try my damnedest to stay as long as I can with this bloody thing, and if it means a number of treatments, then so be it. I’ll keep going till they stop working and then only at that point, when every single option is closed to me will I die from Lymphoma.
So yes, all life is a gamble. Having kids is a gamble. You fear for them their whole lives, from when they are very small, to when they travel the world as adults. You will always fear for them because life is short and fleeting and sometimes brutal but it is also precious joyous and the most important gift any of us have ever been given. The key is to make the most of it whilst you can, the very most, squeeze every drop out of it, because there is no point living a half life, living in fear or not doing things because you might die early.
You have to do what you can whilst here, because there is no second try, and that’s what I want to teach my children. That’s why I am having them, and that’s why I’m sad that I might not see them grow up, but sadder that they won’t have me there to grow up with, just a pale shadow of me through what I commit to paper and what people say about me, a fraction of a fraction of the thinking feeling person I am. The real me, the me that people only know about through my actions, deeds and the way I act and react. That’s another of life’s cruel ironies, people never see you how you really are, only how they think you are. With my children I will try my damnedest to get them to know me as I am, and as children that is nearly impossible. I will also try and give them all the tools they need to survive in a difficult often unkind world, something you can never do perfectly. But if we never set ourselves high standards we never fail, and if we never fail because we never try then that’s the worst thing of all. So that’s my aim and if after I’m gone and they only have the voice of me in their head I will take some comfort from the fact they can read the messages I intend to leave for them and think about me as I was, not as a painful absence, but as someone who cared enough to have them, loved them, looked after them and am proud of them every day for any achievement they make, no matter how small it may be.