When my son Xander was born, it marked the end of a very difficult pregnancy. I had struggled with various health issues and was closely monitored throughout my third trimester. I had weekly ultrasounds and nonstress tests. The doctors always said the same thing, “Everything with the baby looks good!”  Every week, relief would wash over my husband and me. Even though I was sick and miserable, our baby was fine. That was the most important thing. He was born via planned c-section. He passed his newborn exam with flying colors. He was perfect.

A few hours later, he started to have trouble breathing – and my world  began crashing down. My perfect baby was taken to the special care nursery where his lung collapsed.  X-rays revealed a serious birth defect. One that had not been detected in utero. The next time I saw him, he was being prepared for transport to a hospital with a level 4 NICU. My husband went with him. I was recovering from surgery and there was no bed for me at the hospital they were taking him to. I had to stay behind.

A lot of people come in and out of your room when you’re in the maternity ward. My doctor came in for morning rounds and asked how our night had gone. I burst into tears and told her what had happened. A photographer came in to sell me a package of overpriced newborn photos. I sobbed while my mother explained that my baby wasn’t there. The nurses were kind and careful with their comings and goings. They encouraged me to get up and walk, they got updates from the other hospital as often as possible, they worked hard to get me transferred, and they forbid me from googling my son’s condition – because the statistics weren’t good. It was the longest,  most terrifying day of my life. By the time I was transferred, my sweet baby had already undergone emergency surgery. We were told that the surgery was a success, but that babies with his birth defect have lifelong complications. The doctor said, “These are the sickest babies in the hospital.”

In some ways, that day seems like a lifetime ago. But my heart remembers  like it was yesterday. The fear. The panic. The anger. It wasn’t supposed to be that way. I had a husband I loved and I had just given birth to our baby. Life was supposed to be perfect.

I’ve never framed or displayed pictures of Xander from the day he was born, even though he looked like your perfect newborn at first. We do have pictures, but whenever I look at them I wonder if he was already in pain.  Pain that I just hadn’t noticed yet. My chest gets tight when I think about it. Our walls are covered with pictures of him and our family – but none from that day.

And our first family picture…


it doesn’t look anything like I imagined it would.

It’s been almost 8 years since he was born and while we do walk through various health struggles as a result of his birth defect, his life is nothing like they cautioned us it would be. He runs and plays, he’s funny and sweet, he is stubborn and brave.

We’ve spent a lot of time at the children’s hospital over the past year and I haven’t always had a joyful heart through it all. It’s not a road I would have ever chosen to walk or chosen for my child. Even though I trust God and his perfect plan, there are still HARD days. Days I want MY version of ‘perfect’ for him. Days I’m too tired and days I want to give up. I’ve learned so much about my weaknesses – but also about my strengths. I’ve learned about the power of praying friends. I’ve learned about perseverance and even a little bit about righteous anger. And every time I’ve been pushed to my limits – I’ve run right into His limitless grace.

I get sad sometimes that our story isn’t what we planned. That our pictures don’t look like I thought they would. But maybe they’re even better. Maybe they tell a greater story than the one I envisioned. Maybe they show God’s glory in a way that an ordinary story couldn’t. And how incredible to think that He chose to display that glory through us! I can’t think of anything more perfect than that.

One thought on “Perfect

  1. Dear Sara, Thank you ever sooooo much for sharing your journey with your son. My husband and I have a son, age 32 , who was born with Spina Bifida, a frontal encephalocele and hydrocephalus. I understand your words of , “ not your plan”; as we had no idea of Derek’s birth defects till he was born. Despite his 20 surgeries and having to learn all about Spina Bifida, Derek enjoyed his childhood immensely, was on a field and track team of disabled youth, and presently is on an adult wheelchair basketball team and has worked at Strong Museum of Play the last 11 years and loves it! If you go there in the afternoon, he is the guest host in a wheelchair. Praise God for having His hand over us these last 32 years. God reminds me, when I am at my weakest, that He is my strength and carries us through the bumpy roads to His green valleys of peace! God bless you, your husband and son!!
    I hope to meet you in church one Sunday.


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