I’ve been pretty open and honest with my personal experiences quite often in this space, but I must admit something here. I was afraid to write this post.
Up to this point the raw moments I’ve shared were all mine. But this isn’t just about me, and I am very aware I now have a responsibility to another person and his privacy. But while it makes me scared, this also feels like a story that needs to be told.
I’ve spent plenty of time talking about timelines and how they are unique and should be celebrated. After years of being single myself I finally found a way to accept and embrace my life as it was. Then the one thing I had wanted for so many years finally happened when I met Marc four years ago. But that doesn’t mean all is now magically well with my path in life. Just because you find happiness in one area doesn’t mean the tough times vanish away in others.
I’m going to spare most of the details of our current situation, because much of this is my husband’s story, and his story alone. But this part is our story, and I hope one day we will share much more. For now, though, I’ll keep it simple.
Marc and I haven’t started a family yet because as of right now we can’t. The medical risk is too high. My husband has an extremely rare genetic condition that, because of its rareness, was never properly diagnosed. Since it is genetic there is a chance it could be passed on to a child, and the result could be tragic. So, we will need genetic counselors to help us determine our path.
Unfortunately, standing in our way of that counsel was the diagnosis. Without it they won’t test Marc or an unborn child, and because of how truly rare this condition is, we had been unable to find anyone who could actually provide that diagnosis.
I made so many calls and did so much research over the last year, but it continuously felt like I was running into a wall. Every time I thought I might have a lead it would inevitably take me to a dead end.
And all the while I felt inundated with pregnancy announcements on social media which, for the first time, became really difficult to see. I kept feeling like I should be next. But I knew it wouldn’t be so.
What I have realized over this past year is that infertility presents itself in multiple ways. For us it’s that we aren’t even able to start trying to have a baby, and it all feels completely out of our control. The common thread with infertility is the loss. The constant feeling of loss over what you wish you had.
The craziest part is that I don’t even know if I’ll actually be able to get pregnant. Basically, I must wait to find out if I’ll have to wait to find out. I look around at all the pregnancies on social media (seriously, is it just me or does it seem like there’s something in the water right now??) and I can’t help but feel sadness for myself because it seems like they didn’t have to wait or go through so much to have their family.
But the reality is that I have no idea what their experiences were like. Maybe they did have to wait. Maybe they’ve experienced their own immense pain of infertility. Rarely do we ever know. We just see the happiness and use it to remind ourselves of what we are missing.
What I do know is this, having or not having a baby will not define me or my marriage. It is something both Marc and I would love to bring into our lives, but it isn’t all that we are. We will go on to build the best future possible even if it does not include parenthood.
When I began writing this article, we still had no answers. But then I finally made the right phone call and talked to the right person at exactly the right time. I was connected with a specialty department at a hospital in Boston that could provide exactly the diagnosis we needed.
That’s why Marc and I made a quick trip up to New England a few weeks ago. And for the first time in his adult life, Marc was finally given the answers he and we so desperately needed. He got a diagnosis, and we were given back control of our future.
But even with that diagnosis there is still a long road ahead. I have no idea what the ultimate outcome will be, but we’re getting through it. And I am constantly reminded of the messages I preach.
Life is not perfect. There is no such thing as a normal way to be. And what you might think you are missing does not complete or define you. That’s your job, and yours alone.
We just do our best to be happy and hopeful in each moment of each day when it is possible. Because that is the only thing any of us is guaranteed.
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