It’s funny how we plan for things. I had planned for my perfect birth, my wonderful new life as a mother, and how low-key my parenting style would be. I chose the perfect cloth diapers, the perfect little swaddlers. I chose the perfect name for my new baby. I was fearless. Confident. Strong. Peaceful.
She was born at home on a hot evening in May, the sun shining and the air humid and heavy. Our family was all here and we were so happy! Our baby! Our little Wren! She was beautiful and looked just like her daddy (she still does). We snuggled her, passed her around, and the three of us settled into bed as a new family while the midwives looked her over.
She was perfect.
Then, the moment I will never forget. Silence. Then, “Oh my gosh, she has a cleft palate.” *Cue the confused looks* We had never heard of that before. What? But she’s fine! She looks fine. I couldn’t even understand the words coming out of their mouths. She has a birth defect? But I did such a good job being pregnant! I did everything you’re supposed to do to have a healthy baby! What do you mean, the roof of her mouth is just –not–there?! I didn’t know what to think. After such a peaceful birth, we were crushed by the news.
Everything changed when we found out our baby wasn’t the same as most others. Yes, we had a healthy baby who could function in the world, one who brought us so much happiness. Most people had no idea anything was wrong with her, let alone the potential string of surgeries lying in her future, and we felt alone. We felt betrayed. We had to redefine our belief of what “perfection” meant to us–because no matter what, she was still perfect, still flawless even with her flaws. Still whole, even though part of her was missing.
It’s hard to talk about because no one seems to know what to say. We’ve heard a lot of “Well at least you can’t tell by looking at her.” — No. Please don’t say that. We would love her just as much if you could tell, and she is beautiful no matter how she looks. Don’t try to minimize her condition by commenting on her appearance.
On the other hand, “She sure is growing up healthy and strong!” was great to hear! It made us feel proud of how we were doing as parents. Taking charge and succeeding in things we could control.
“After her surgery she won’t remember a thing.” — I wish this were true. But isn’t she a person just like you? Do you remember pain? I’ve asked her if she remembers and she says yes. And besides, we remember. It’s been with us every day since she was born. We will always carry the memory of consoling her in the PICU when she had complications after her first surgery. And we hope she remembers soothing moments during the hard times, too. Her whole family caring for her and showing up to support her, bringing smiles, cuddles and a little Olaf doll that sings.
We’ve risen to the challenge of staying present in the midst of having big, nerve-wracking surgery dates in the future. We try to fill every day with as many snuggles and as much joy as we can because it helps make the rough days easier. We fondly remember the spit bubbles and nose milk that happened constantly before her first operation. And we look forward to the day she can finally say “Daddy” without having to plug her nose.
“She’ll be stronger for it.” — Maybe. I don’t know. We’ll never know. She does have the will of a raging bull, but I have a feeling she’d have that anyway. She’ll always be strong, and she’ll always be a fighter; it’s just in her blood.
Coming out of her second surgery though, I can say this much: It’s made me stronger. It’s made me humble and more compassionate. It’s given me a huge look into the lives of so many people: life with an “imperfect” child, life with a child, period. It won’t get any easier, but we will get better at handling it and helping others through it. Redefining my idea of “perfection” wasn’t easy at first, but now I see it as the biggest blessing I’ve ever received.
Wren, our little cleft baby.
Do you have a child who made you reconsider your definition of “perfection”? How do you make each moment a little sweeter? Share your story in the comments!