grateful and grieved

Last night, I watched Chloe and Lydia (my two year olds who were born at 29 weeks) playing in the living room. There was nothing particularly different about what they were doing, but I felt myself get caught up in this powerful wave of grief.

They’ll be three in just over two months and I
still can’t have a conversation with them.

My oldest daughter, Anna, turned nine last week and, per our tradition, we spent about an hour watching old videos of her and anytime we do this, Zach and I can’t help but compare where our older kids were with where Chloe and Lydia are now. By two years old, Anna wasn’t just talking in full sentences, she was lying (a sign of intelligence and problem solving. it’s a good thing at that age!), scheming, pretending, and able to answer questions, tell us her name, her age, who her family is. Her older brothers were able to do the same at that age. There is a grief in not having that same experience with Chloe and Lydia. And not just because it’s what we want for them, but because we want the world to be easier for them.

I watch them struggle to understand the world and I get angry as the world refuses to understand them. “Why can’t they just XYZ?” and “Have you tried ABC?” They present as normally developing two year olds, but they aren’t. And so we hold this tension of rejoicing in the fact that they are alive with no ongoing medical issues and the grief of what was lost in their premature birth, separation from me, intubations, interventions, and two months in a plastic bed in a NICU.

Grateful and grieved in the same breath.

It’s a reality we haven’t really had to face until this past year. And now we’re approaching three and we’re filling out IEP evaluation forms, and we’re looking at preschools, and it’s all new and it’s all hard and it’s all good, and it a good that’s better than what we were expecting, but it’s still hard.

We went to church on Sunday. A traditional church service. That’s new for Chloe and Lydia. It was their third time in a few months and it did not go well. We left before the sermon started. They cried and screamed all the way home. And for the last three days, we have been trying to recover from their dysregulation from going to church for an hour. It throws our whole world upside down and it’s exhausting as we recover and get them to a more regulated place.

The world doesn’t understand them. The world can’t always accommodate them and we don’t expect it to. But we can. And we do. But sometimes it feels like so much. Too much. How much can we ask of our older kids? Will life get easier for all of us? Will we find a way to hold all of these tensions and make the right decisions? Will the world get easier for my little miracle girls? I really hope so.

But what I do know is that truth and grace lie somewhere in the tension and rarely, if ever, in the black and white.

We were given the gift of an inexplicable physical miracle and it is still hard. The gratitude for the miracle isn’t negated or overshadowed by the acknowledgement that I want life to be easier for my little girls. Three years later and it is still surreal to me that we got to take them home. And three years later, I still wish that I could have protected them from everything that cost them their full cognition and development. Is that bad? Is that wrong to wish that my kids could have more, while being so grateful that they’re alive? Is it ungrateful to pray that God would continue to do a good work in them? Is it selfish to want the world to make room for them?

Maybe? But I don’t think so.

We have to be ok with the tensions in our own lives if we are ever going to be gracious to the tension in other people’s lives. And vise versa. If we want people to acknowledge the nuances of our circumstances and our pain, we have to be willing to do the same for others.

Life and faith are easier if things are simple.
If only it was ever simple.

I think we need to look at the tensions we’re holding and acknowledge them, if we haven’t yet. Say an honest thing like, “I am grateful and I am mad.”, and take a breath and let go of the guilt and shame you might have felt for admitting something complicated like that.

It’s not a sin to have complex feelings.
It’s just human.

- Kristen