The sun keeps popping up

A story for Sammy

The sunset is pink, orange, and purple on the way home from a visit for my son at the children’s hospital in Phoenix, Arizona.

Our sweet baby is riding in the backseat. Sleeping peacefully. My husband and I are trying to get home at a reasonable time after a long day of medical appointments for Sammy, our one-and-a-half-year-old. Sammy loves fiercely, is super funny, and has shown his strength and bravery even before he was born, when we got the diagnosis of Down’s syndrome and found out he had a congenital heart defect.

I go back and forth between checking Sammy in the backseat and looking ahead to the sunset over the mountain. Isn’t that so much of life? Looking back but also trying to remember to gaze at what’s in front of us.

Nature, or God’s playground, has always been a bit like stepping into a fairy tale for me. The current two hours drive from the hospital back to my small town in Arizona is familiar. We’ve done the trip so many times. Usually, I end up closing my eyes or talking incessantly to my husband. I often call my daughter who is at home with her grandma. Sometimes, in the flurry of what’s been going on, or how tired I am, I forget to take in the scenery.

On this trip home, it is late in the day, and like the trials of having a baby with chronic medical needs, I feel like I’ve seen all these same hills and valleys a thousand times before. What else is there to see?

I see the sunset up ahead. It’s too bright not to notice. Enveloping the whole sky. Providing light on an evening where the sky would otherwise be dark already.

I’ve thought about light and dark, sunsets and sunrises a lot in the last couple years. I love sunsets, but what I really like is the promise that the sun will rise again tomorrow, no matter what kind of night we’ve had.

When our baby boy was born, nurses sent me home from the hospital not just with hospital blankets and wipes, but with a medical grade, loud, often beeping monitor for his sleep. Sammy’s NICU stay prepped me at least a little for the nights to come of watching his heart rate and oxygen. The monitors in the NICU blared all day and night long. It was a wonder the babies there ever slept.

After giving birth and quickly rushed into the NICU, life at home was more sleep deprivation, but on steroids. Anyone who’s had a baby with colic or who gets their days and nights mixed up, understands the level of bags under the eyes that accompany those first few weeks home.

My nemesis was the monitor. I’d love to say I grew to love and accept it, but for a long time, I did not. I learned to tolerate it because it helped my baby stay alive until his first heart surgery to correct the giant hole in his heart. I appreciated how it warned us of any concerns we needed to take seriously. I also strongly disliked how it beeped unnecessarily, when it gave a false reading.

Nights were very unfun and tiring. I felt like nighttime was when I turned into a soldier standing guard, instead of a mom trying to get a few precious hours of sleep. Sometimes in the middle of the night, I would tell myself, “Everything’s harder at night. The sun will come up soon.” I often slept better during those first few months in the light of the morning. It didn’t seem as scary when the monitor went off while it was light out and I could see for myself that Sammy looked okay.

I was always happy for the morning, even if it meant a day that was full and tiring in itself. Instead of breast feeding, I could only bottle-feed Sammy, and doctors told us eating was like running a marathon for his little heart, so patience was key. It took a long time for each feed. I also needed to pace myself. I, too, was running a marathon.
Sunshine isn’t everyone’s North Star, but it is mine. Sammy was born in May, so we had summer sun for most of his first few months. It gave me peace knowing that in the midst of challenges and trying to keep my baby alive, there was the sun, consistent, reliable. Every day, a gift from God.

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I blink and Sammy turns one.

We made it through two heart surgeries and had several months of sleeping without being on his nighttime monitor.So much to celebrate.

One day, a few months after his birthday, Sammy gets sick and has to be on the monitor again.

The dreaded monitor.

It starts beeping at me, like a frenemy who doesn’t want me to forget they exist.

Remember me?

I start to wonder if I’ll have to reapply to be a night guard this time around or if my spot is still available.

Thankfully, Sammy’s heart seems okay, and so I keep going.

But I’m too tired in the morning to appreciate the sun coming up, peeking through the shades waiting to make its big entrance and right every wrong from the night before. Our toddler daughter usually sleeps with us, and I’ve asked her to try and stay asleep until it’s light out, a marker for young and old that a new day is here and we can begin again.

Our girl, Lu, Sammy’s brave big sister, loves to be happy and give her brother hugs. She gets excited to tell me whenever she sees the sun. In moments when I can’teven remember what day it is, when nights are long and hard and I am just yearning for more sleep, she reminds me that we could be on the brink of something good. Not everything is good and not every day is full of sunshine, but some days are.
Some days the light comes through even more visible than it’s ever been. On days like that, I find hope in my daughter’s words: “Mommy, sun is popping up again.”

Indeed it is.

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Today is our precious Sammy’s second birthday.

I wrote this story a while ago, but wanted to share it today. It reminds me that learning to keep going, for me, does not come with a play book or prescription, it comes with each day turning into the next, by God’s grace.

I write to remember.

I have so many stories of Sammy, so many things to jot down here when we can keep getting more sleep. The irony is that I wrote this story and then we ended up with many months following of sleep deprivation due to some complex health challenges for Sammy.

Today, there may be birthday boxes and bows, but I remind myself that my stories do not have to tie up and fit like they do.

It’s okay for life to be beautiful — and hard.

I am a living testament to this.

As his mom, I have to balance the reality of the fragility of life that is pushed in front of me all the time, as well as the utter joy that I have a miracle baby (toddler!) and I get to be his mom.

Today is a celebration though, and I like celebrating.

Thanks for joining me back here again. I’ve missed this space but needed some time to collect my thoughts.

I’m working on a collection to hopefully encourage other moms (and dads! and anyone!) through stories, which is the only thing I know how to do. Keep telling stories. Never give up even when it feels impossible. And keep hanging onto hope for the sun popping up again and again, meeting us where we are.

*Sammy boy, you delight everyone you meet. You teach us all to live and love fully. You’ve been a miracle since the moment we learned about your life, and you’ve fought through every odd to keep living it. May the world see more of God’s love through you and may you always bring the fun and happy wherever you go. Thank you for being you.*

Thanks to all who have been traveling this journey and all of you who are on Team Sammy. I hope a gift to you will be the collection I’m working on. In the meantime, I’m so grateful for the support through my writing and beyond that many have brought our family.

Shameless plug:

Our family life is super busy (some might call it chaos :)), so any little bit helps me to be able to focus my attention here more to financially support our family with my writing. Even considering becoming a paid subscriber is a gift to me.

Much love and may your day be merry, like Sammy!