When we were in the NICU, when we were first learning about the impact of Madeleine’s brain hemorrhage, I remember telling our nurse practitioner that I felt like everyone else’s babies were doing better than ours. I knew that it wasn’t true, that there were lots of babies who were sicker and more fragile, but that was how I felt at that moment. Eventually, my babies got bigger and stronger and could breathe on their own and feed without a tube. I remember feeling so relieved, like we had dodged a massive bullet, that wow, things were pretty scary there for a second, but at least it was temporary. We can move on now.
People have said how strong we are, that we are great parents, that it is amazing that we got through what we did. But, just like I know it wasn’t true that day in the NICU when I thought ours were the sickest babies, I know it’s not true that we are strong and great and amazing. Our babies came home. Our babies made it through. Our babies lived.
The first time it ever occurred to me that the twins could actually die was the day of Madeleine’s first surgery. We knew before Maddie and Reid were born that they might die right away, that maybe they wouldn’t be able to be resuscitated, or they would be resuscitated and it would all just be too much for their little, not-supposed-to-come-out-yet bodies. But when they lived through the birth, when they made it through the first week with no major problems, and then the second and third week…well, I started to think that the worst thing that would happen to us would be that they could end up being disabled or delayed. But the day Madeleine went in for her first shunt insertion, I sat by her incubator in an unfamiliar hospital and it hit me – this might actually not turn out okay. Her CT scans looked pretty bad. She was still only 32 weeks gestation, not even full-term. It could be too much, she could get an infection, the shunt could fail, lots of bad things could happen. I had to admit to myself that I could still end up being a mom whose baby didn’t make it. Part of a heartbreaking club that no one should ever have to be a member of.
Maddie made it through that day, and again four weeks later when she had a second shunt surgery. She has made it through ever since, and she is doing better than I ever could have imagined. But I know that lots of babies don’t. That things happen all the time to these beautiful little children who are so, incredibly, infinitely loved – more than they could ever possibly know – and deserve so much better than what they were given. I think of these babies all the time. Every time Madeleine meets a milestone that we didn’t know if she’d ever reach. Every time I watch my children, in awe of their difficult beginning. Every giggle and hug and scream and cry and meltdown. Every wonderful, frustrating, magical moment, I think of them.
It’s the awful truth about the world – life is suffering. We’ve all felt it, in different ways, and we will all continue to feel it, again and again and again, in ways we cannot even begin to anticipate. There is no good reason why some babies live and some don’t, why some beat the odds and some don’t. Why some come out too early to live, or die in utero, or go to bed one night in their cribs and never wake up. I guess you just roll the dice and hope that the bad stuff won’t happen to you.
All I know for sure is that when I put the kids down to bed this evening, I hugged them a little bit tighter. For all of the children who did not make it.
(This post is dedicated to Robbie, the Wee Warrior, who was so very loved by so many.)