I wrote a piece in February, 2011 to help promote The Type 1 Diabetes Prevention Trial, www.stopdiabetes.com.au It got published in a number of different places online and in traditional media. I have decided to re-post it on my own blog and do a shout-out to a dear online friend, Jeff @betespora https://betespora.org . Jeff was inspired to start discussing having children with his girlfriend at the time, (RIP Liz). That’s what it’s all about for me; keeping the conversation going!
As I read through the paperwork for the Intranasal Insulin Trial II, my memory takes me back to one of the first dates I had with my now husband, Paul. I remember the topic of my type 1 being carefully inquired about. Obviously Paul had not discovered how open and willing I was to talk about it. We were walking home from a night out with mutual friends and the conversation meandered its way towards the question, “What is the chance of your hypothetical children getting type 1… actually do you even want to have children?”
At that stage of my life, I honestly did not know the answer to the first part of the question. Being in my early twenties, having left the nest with further study and a career mapped out, all I was really concerned about was whether Paul and I would go on another date! As for the second part of the question, at that point in time I thought I had made up my mind. I was never going to have children. The thought of passing on such a burdening condition was too much for me to bear… Further polluting the human gene pool; not me! How on earth would I live with myself if I gave birth to a child, or children who had the pre-programmed potential to develop type 1?
For those people who know me can see that I had a significant change of heart since that conversation with Paul! We did end up going on another date. In fact, we married in 2004 and have a delightful five year old daughter, Aspen and another child on the way. It was not long after that fateful night that I began looking into the statistics about type 1. I discovered that most people in the general population have a 0.4% chance of developing it. That chance increases to about 2% if your mother has it, and 6% if your father or siblings have it. I soon realised that the statistics weren’t so daunting after all. The thought of sharing my life and having children with Paul far out-weighed any statistic.
So I’m puzzled as to why I have been procrastinating against signing a consent form to allow Aspen to enter a type 1 diabetes prevention trial for the last 16 months. I keep asking myself why I wouldn’t want to try to prevent type 1 developing in her precious body. However it’s not as simple as that. There are many layers to my resistance. Paul’s view is that if we have a chance to stop this condition in its tracks, we should. And I agree… to a point… then I stall…
Scenario 1: What if Aspen tests positive for the chance of developing type 1, enters the trial in an attempt to prevent it and develops it anyway? How do I explain that to her? After enduring blood tests and medical intervention, I don’t think I fully could. But I do think that the mountain of hope that would be built around “the chance” could be too easily destroyed in an instant to even risk it. That is heart breaking. That is life changing. As a mother, that feels like failing in Aspen’s wondrous eyes.
Scenario 2: What if Aspen tests negative for the chance of developing type 1 at that point in time? How often after that do we seek to get her re-tested? Will I ever be able to breathe out and stop looking for the final and absolute answer that every type 1 parent wants to hear, “Aspen will never develop type 1 diabetes.” To me that would be like starting a running race that had no end; no finish line to cross.
I am also acutely aware of type 1 parents who have decided against entering their sons or daughters in the trial. Yet I can bet my bottom dollar that they will line up with their child to receive the prevention vaccine if the trial is successful and one is developed. That makes my blood boil. How is it permissible that they join this community of people touched by type 1 only when it suits them? Disease prevention, no matter what disease you are talking about, is a process in many ways beyond the literal. To me it would be the same as someone saying, “I am going to live in this newly-built house with my family, so long as you pay for and build it.”
And then there’s me. I have lived with type 1 for 24 years. My family and I were never presented with the opportunity to actually prevent this disease. Until me, there was no diabetes in my family. Do I feel responsible for the future burden others may bear? Sure do. Do I wish that I could have had a chance to stop the onset of type 1 diabetes in me, and consequently in my family? Yes again.
And there is my answer. How could I deny my daughter the very opportunity that I wished I’d had all those years ago? In so many of my recent personal experiences, I have witnessed fellow humans deliberately taking away happiness from others. Why do we do that? That is a question I have pondered for most of my adult life. Sometimes the reasons are obvious, and at others it is hidden under layers of despair, selfishness, confusion and desperation. I certainly don’t let the decisions others make ultimately govern my choices and direction in life. So the forms have been signed and sent off. The process has begun. Our family will take steady and considered steps throughout this journey. We will be INIT.