I’ve been thinking about this topic ever since I saw those two life-changing lines. How have I changed this time around? Who am I now? I could say I’m the same person I was five years ago during my first pregnancy but that would be a lie.
I am absolutely not the same person. I don’t even recognise that person anymore. It’s possible that all mums feel that way but when your child is handed multiple diagnoses, nothing is the same anymore. Even writing these words, I am conscious that not all pregnancies end as expected and not all end with a baby. I’ve tried writing something similar before, only for that text to no longer be relevant. You could say I’ve become more cautious, more suspicious, more wary. You’d be right, but also…
I am more cynical.
Not very long ago, I was sitting in the waiting room of the gynocologist’s office filling out a form before my first scan. I was working my way through the form ticking and crossing all the necessary boxes until I saw:
I accept that these scans cannot pick every malformation or abnormality □
I didn’t know whether to laugh, snort or cry. You’re telling me, I thought to myself. With my first pregnancy, I felt a sense of triumph when my son had ‘passed’ every scan with flying colours and entered the world deemed as ‘healthy’. I had done it. Because of me, my son was here safe and sound. Now I know differently. I know that sometimes no matter what we do, no matter how those scans look, life can take a different course. I dutifully ticked the box and wondered about my first pregnancy. Had I also read those words? Did I even acknowledge them at the time? What did they mean back then? Very little, I imagine.
I don’t believe statistics anymore.
Less than 1% chance!
It’s highly unlikely…
Ultra-rare.
Sure, but these things have to happen to someone, sometime.
Rare is only rare until it happens to you.
And, when it does, those words mean very little anymore.
I know too much.
“Is that the corpus callosum?” I asked squinting at my baby’s brain on the screen.
“Umm, yes, it is actually” my gynaecologist replied.
“Ahhh, I have a few friends whose children are missing that part of the brain”.
“You’re quite the expert on malformations, aren’t you?” he retorted.
I tried to analyse his response. Was he being sarcastic? Was he impressed? Did I come across as a weirdo? And then I let it go. Who cares? I am proud of the knowledge I have accrued from the beautiful families on this rare journey.
The downside of all that knowledge is that I feel like I have seen behind the curtain of what can and does happen. I do not look at my friends’ lives or my own life and think that life looks terrible, I look at our lives and think nothing can prepare you for the curveballs and I wish things were easier sometimes.
Some days, it would be nice to keep the anxiety demon at bay by replacing that curtain and never thinking about it again but that’s not an option. And, if that curtain goes down, gone are all the incredible friendships I have made and the beautiful amazing children I have come to love dearly despite never meeting. And gone would be the eye-opening experiences I have been through and I wouldn’t give any of that up. Not today, not ever.
But it’s not all doom and gloom.
I am learning to live in the moment.
This might seem like a contraction to my previous statement but, hold on. I can be a bit of a control freak. Running late is a sure way to make my anxiety go through the roof. I like things to be just so. However, having a child with a genetic mutation that makes him one of fewer than 200 known cases in the world does something to your understanding of control. You realise, when it comes to controlling your pregnancy and the outcome, that yes there are some things you can do but there are also some things that you have ABSOLUTELY no control over. Zero. Diddly squat. You can munch your vitamins and diligently check the back of cheese packets but that will only do so much. With this realisation comes a sense of peace. I can accept that I can know so much about rare diseases and I can take things day by day. Both can co-exist in the depths of my mind.
It’s cheesy and annoying but you start to feel what will be will be. You learn to live in the moment more.
Today I am pregnant.
The scan looks ok right now.
Everything seems ok.
I am learning to live in the discomfort of the unknown and recognise that I never truly have control over anything.
I am more empathetic.
Since embarking on this rare life, I’ve come across those who cannot or will not have other children for a variety of reasons. I know people who have lost or will lose their children to their rare disease. I see the emotion soup my fellow parent caregivers go through every day while trying to keep their children as happy as they can be. Other times they are just trying to get through the day in one piece. Their stories become interwoven with mine (whether they know it or not). I think about their families (whether they know it or not). It is impossible to be part of this rich community and not be affected by the lives of others we are so honoured to witness. While I don’t know what it’s like to be these people, I feel like I can understand their experiences more and can hold space in my heart for all their stories. I never want to stop learning, growing and trying to understand the human experience.
I have become a stronger advocate for myself.
There are far too many times I have accepted things that were not acceptable during the last five years. I have stayed quiet because I felt incompetent in the language, I didn’t quite understand or I felt less than. I had an important and nerve-wracking medical procedure at around 11 weeks pregnant with this pregnancy. Before I would have tried to stumble my way through the appointment the best I could and hope for the best when I didn’t understand something. This time I had the doctor sit by my side and go through every point on the consent form in simple terms in German until I knew exactly what I was signing. I had them explain the procedure until it was completely clear to me. I knew the risks, I knew the odds and I knew what I wanted.
It was empowering and the start of something new for me.
I have learned to recognise and work through my emotions.
Before that procedure, I was terrified. I cried all the way there and I didn’t try to stop the tears but let them come, wiping them out the way so I could see the road. After that procedure I was in pain and mad. I drove home listening to the angriest ragiest music of my teens. I was mad I had to live through that. I was mad I couldn’t just have a typical pregnancy experience and I was mad to be a woman. All the way home I raged until I walked through that door feeling like something had been released. Now, at 27 weeks pregnant, I feel anxiety creeping back in. All those things that can and do go wrong worm their way back into my thoughts. Every evening I feel nauseous and breathless. Rather than try to stop it, I talk my worries through with my husband, I write them down, I let everything flow until I am calm for bedtime.
I’m clearly not the same person. Am I a better person? Well, I don’t know about that. But I am changed. I will never stop learning and evolving and I’m sure in five years’ time, I will be different again. Not better, just different.