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A survivor's guide to huntingtons? Am I surviving?

Posted Oct 13 2009 10:04pm
I don't know.

When the IVF was still ongoing, I could not bear to think that it would not work. I did not know what I would do if it didn't. I imagined that dealing with a negative pregnancy test or having no eggs at all would be horrific, much worse than having to cope with having the gene in the first place. Afterall, this is our solution to having the gene. This is our strategy to dealing with it and handling it. And if our strategy goes down the pan, what happens then? How could we cope with our solution failing?

Wednesday was horrible. Staring at the test, willing it to turn positive. Getting home in the evening with still no proper period. Getting the pregnancy test back out of the bin to double check it. Redoing another pregnancy test just in case. And telling everyone.

Today, the shock has passed but the emotional rollercoaster remains. Right now, I am a whole bag of different emotions. I am relieved that my period has now come, bringing an definitive end to our first attempt. I also feel relieved that the process has come to an end. That sounds weird. But I feel relief that the stress and strain of the past few months has ended. OK, so the ending was not the one I wanted, but it has ended nonetheless. And I am sad. Sad that it has ended and sad that I have my period. Sad that the little life we had started and that lived inside me (even if only briefly) has ended, and sad for all those others that we lost.

It was, afterall, only our first attempt. But how many attempts can we handle? How many years do we want to devote to this before we either (a) achieve our goal (an hd-free baby) or (b) have had enough? IVF is hard. In so many ways. How many times can we go through it emotionally, practically, physically and financially (if the funding has now run dry) with no guarantee of reaching our goal?

I feel tired. And drained, emotionally and physically. We need time to recuperate, time to heal and time to think. But is time something we have the luxury of having? I am getting older all the time. And with age comes both reduced fertility and the increased possibility of the onset of HD. I never thought it would take this long to get to where we are now but it has. Can we afford more delays? And is this surviving the disease? Is this fighting back? Have we any chance of success?

And the question beats on in my head: can they do anything to improve our chances if there is a next time? They've seen how I reacted to the drugs, the number of eggs we produced, the number we lost so early on... Can they fix that? Yet, no sound has come from London. I left a message on wednesday with our results (you rarely get through to a person) and no phone call has come. So as yet, no offer of counselling to handle the news, no discussion of what the next steps could be or of where things went wrong, no support or advice. You are on your own to try to handle and digest this devastating piece of news. To pick up the pieces of your life and to try to live again.

Am I surviving? At the moment, I don't know.
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