The only courage that matters is the kind that gets you from one moment to the next.
~Mignon McLaughlin, The Second Neurotic’s Notebook, 1966
As I sit here typing, my littlest cherub kicks and wriggles inside my belly. I feel (and probably look) every moment of this 26 week-long pregnancy, and find it hard to believe there’s still another 14 weeks to go. It has been a long journey so far, and yet has gone by in the speed of light. And in 14 weeks, a whole new journey begins, ready or not.
You see, I know that this baby growing inside me has Down syndrome.
We were somewhat surprised by the presence of our Littlest Love in the first place, and it took about four pregnancy tests to convince me that our third child was in progress. Coming from a family of seven kids, I knew I wasn’t really ‘done’ with child rearing after two (and thankfully has a husband who had resigned himself to ‘hanging on for the ride’ in this adventure of parenthood and accepted that we would probably have more than two children), but I’m not sure I’d really come around to the thought of being pregnant again quite yet. But, hey, no time like the present and while we’re in the midst of chaos, why not have three children under four?!? Eek.
I made it through the first trimester feeling a little more ‘under the weather’ than in previous pregnancies, but when you have small two children you don’t really have time to stop and feel sorry for yourself (even if you want to!). It was hard being so tired, though, and seeing ‘Cranky Mummy’ rear her ugly head more often than I’d have liked. As when we were pregnant with the boys, we told our families and a few close friends, but planned to keep any public announcements until after we’d had our 12 week scan. But that’s when things got a bit rocky.
On 12 September, we went for our 12 week/nuchal scan. The scan itself was fine, with baby looking very healthy and ‘structurally good’ according to the sonographer. Sigh of relief. We then met with the doctor who put all the numbers in the boxes and waited for the computer to spit out our final result for the chance our baby would have Trisomy 21 (Down syndrome). The answer was 1 in 14. I remember the doctor talking about tests we could do, where to go from here, etc. But basically I was numb, felt like I was having an out of body experience.
We stopped at a park on our way to pick up the boys from Grandma’s house. I cried, and we began Difficult Conversation #1 of many. I felt as though I heard God say, “Just trust me.” While comforted by that, I didn’t get the sense that He meant “Trust me, I’m going to make this easy”… more like “Trust me. This might be a cracker of a journey, but I’m here with you.” I think in hindsight I had a somewhat different vibe about this pregnancy. I remember telling Ben that I’d asked God not to challenge me on this one. He said, “Well, that’s your problem then – you should have just flown under the radar!” 😉
The next few weeks were difficult, to say the least. There wasn’t much quality sleep happening. I’d have that moment in the morning where I’d wake up feeling refreshed, then a sinking feeling when I remembered. I fluctuated between feeling completely lost and terrified, and feeling hopeful that I was being a drama queen over what would turn out to be ‘nothing’. Ben and I talked a lot about our fears, thoughts, feelings, possible action plans, and then had times where we just couldn’t talk about the baby anymore. We tried to keep things as normal as possible for the boys amidst our emotional turmoil, but were thankful for the wonderful family who took them out for adventures so Ben and I had moments to ourselves. Overall, I remember feeling very loved and that we had many friends and family who were travelling this journey with us. They couldn’t stand in our shoes, but they cried with us, fed us, babysat for us, supported us. They made me feel as though, whatever happened, we could do this.
While challenged and terrified by the possibility, we came to the decision that we were having this baby regardless of how many chromosomes it would have. One of the next questions we had to ponder was whether or not we could wait until the baby was born for a confirmed diagnosis. I did lots of research, spoke to different people, weighed up all the risks, and came to the conclusion that not knowing was killing us. I felt like either we would find out our baby was chromosomally ‘typical’ and hopefully relax for the rest of the pregnancy, or that the diagnosis would be confirmed and we could move forward, plan, grieve, and hopefully start to look forward to the arrival of our Littlest Love. So we booked an amniocentesis, which we couldn’t do until 16 weeks, and settled in for the next wait.
The amnio was the easy bit. Booking it in and planning for who would help with the boys afterwards (as I was technically supposed to be on bed rest for a few days) gave me something to focus on. I wasn’t exactly looking forward to the process of having a needle inserted in my belly, but felt confident in the hands of the doctor we’d chosen and the procedure went really well, with little, if any, pain. The amnio happened on a Tuesday morning at 11am. We were due to receive the results by phone call from either our obstetrician or the doctor who performed the procedure within about 48 hours.
On Day One post procedure, I settled in at home with a good book and napped on and off, enjoying the peace and quiet of being temporarily child free. I put the thoughts of getting an early phone call out of my mind and tried to assume we’d be waiting the full 48 hours. I asked loved ones not to call my phone, as I knew I would have conniptions every time it rang. On Day Two, my stomach churned from the second I woke up. I wondered whether they would ever call. Mid-morning, my mobile rang and the phone number of my OB came up on screen. “This is it,” I said to Ben. Deep breath. Or not. It was the receptionist from our OB’s office, rearranging our next appointment for the next day. Aghghghghghg. By lunchtime, I was categorically nuts and by mid afternoon I could have been diagnosed clinically insane, surely. Waiting. Sucks. At 3pm, I told Ben we needed to call them.
We tried contacting the doctor who performed the amnio, but he was unavailable and we could only leave a message. I was pretty sure he was avoiding us so that our OB could deliver the ‘bad news’ personally, and I knew our OB was delivering a baby in surgery that afternoon. More waiting. By the time we got the call, I was beside myself. Couldn’t answer the phone and didn’t want to hear the news on speaker phone. I made Ben be the brave one. But I knew what the answer would be. I watched his face. He just nodded, “It’s positive. Baby has Downs.” We cried and hugged each other. There was a massive storm and the rain poured down, drowning out any other noises. Ben went to pick up Sam from daycare. I sent a text to the loved ones who were waiting in the wings for news. And life went on.
I won’t give you a blow by blow account of life past that moment in time. Suffice it to say, the universe shifted on 13 October. There have been dark moments. Messy ones. Moments when doing normal stuff like getting your children to clean their teeth seemed far too hard to bear and hiding in a corner, rocking gently, seemed more appropriate. We have been to counsellors separately, been to a counsellor together. Muddled through. Cried a lot. Sometimes loud, ugly cries. We’ve leaned in and tried to love each other through our pain. And slowly, somehow, the fog has lifted a little each day.
I’d love to be able to say that the journey since diagnosis has been in an upward trajectory and that, two months on, we’re completely okay with the concept of having a child with Down syndrome. But if I did I’d be lying. I have had weeks where I’ve felt completely okay with it and mostly invincible, but a recent ‘crash’ made me learn the hard way that it’s just going to be more like a rollercoaster. We have good days and not so good days. And that’s okay. We’re learning to ride the wave and take each day as it comes.
So far, the experts have suggested that the rest of the pregnancy and birth should progress as ‘normal’, apart from a few extra scans to check growth and wellbeing. At our 19 week scan, we were comforted to find that Baby Love’s growth was all on track and heart and brain function looked great. Phew. We felt very thankful for that news given all the challenging information we were already trying to process. It was especially comforting when the research shows about 50% of children with DS can suffer from heart conditions. We had another scan this week. Held our breaths again, but all seems good still, thankfully. We even got a smile in 3D, which is pretty amazing.
There is so much about the journey ahead that is unknown, and unknown can be a bit scary. But, really, what do any of us know about what lies ahead? What I do know is that I love this baby already, with every fibre of my being, and can’t wait to be holding him* in my arms, breathing in the divine scent of a newborn, and welcoming him into our lives as our beloved child, rather than just dealing with a ‘diagnosis’. What I do know is that I have two beautiful children already who are going to make the most amazing big brothers to our Littlest Love and love him and drive him crazy just as much as any other younger sibling. What I do know is that we’re surrounded by such a wonderful network of family and friends who will love our baby almost as much as we do. What I do know is that I have a wonderful husband who is an incredible daddy to our two boys and will be just as incredible as a Daddy of three. I know this because he has such an amazing capacity to love and nurture (despite his somewhat tough exterior ;)). What I do know is that this diagnosis has challenged us to our very cores, but we have managed to love each other through our sadness and I know that will make us better people and better parents in the long run. And that’s all I need to know right now, the rest will unfold as it should.
So for now we’re learning to hang on for the ride, wherever it takes us, and just trying to have enough courage to get us from one moment to the next.
*Despite all the genetic testing and extra scans, we’ve managed to avoid finding out the gender of the baby so far. But for ease, I’ll refer to the baby as a ‘him’ – that’s what we think we’re having, anyway!