They say you should never look too far in to the future. I don't know whether they say this to prevent disappointment, as it will never look like you thought it would? Perhaps more so, it is to remind you to remain present, live in the moment and enjoy what you've got whilst you've got it.
I certainly did not expect my future to include a heart condition and a defibrillator in my chest. Especially only 2 years into my marriage. I was excited about our many adventures still to come.
We were contemplating starting a family. As two self employed creatives there were already questions to ask. Mainly; can we afford to do this? Can we both continue to pursue our dreams? but now there are SO many more aspects to contemplate.
If we have children, (if we can have children) will we do it naturally and risk passing on the gene, there is a 50% chance I will. Therefore giving a child a life of endless hospital visits and testing. Giving us sleepless nights and constant worry; will they develop the condition and when will it strike? We wouldn't be able to relax whilst watching normal joyful activities like our child running or playing football without constant fear. And what kind of parents would that make us? Never mind the guilt I would feel.
Then there is the option of PGD which we are very fortunate to be offered. It is a process similar to IVF but they make sure they only use embryos that do not carry my faulty gene.
Finally, there is the pregnancy itself. Will I be strong enough to carry a child and will the pregnancy/birth take it's toll and progress my condition. What kind of a parent will I be if I am physically not strong enough?
When making these decisions, I guess it boils down to how badly you want to be a parent. If you really want to start a family then this shouldn't stop you, some would see it as a fortunate position because we are already in the know so doctors can keep an eye on you and hopefully avoid anything untoward happening.
I feel sad that I'm impacting on my husbands future too. He didn't know what he was taking on when he married me. Now our adventures are restrained, we have to consider everything carefully and can never be totally care free again.
Fortunately I have the most wonderful understanding and supportive husband in the world. We've always been very open and can discuss anything and we seem to be on the same page. So we've decided to opt for the PGD, it is an extremely long process and who knows what other bridges we will have to cross or questions we have to ask ourselves along the way.
I must stress that everyone is different and feels differently about becoming parents, so you must just arrive at the decision that feels right for you.
Since writing this blog I have been invited to join a group on facebook specifically for women with ARVC who are contemplating or going through pregnancy, this is so helpful I had to share it, so check it out here.