by Kasey Mathews, mother of son Tucker and daughter Andie who was born 4 months early and weighed just 1 lb 11 ounces at birth. Kasey is also the author of Preemie, A Memoir.
The sun shone in through the kitchen window spreading across the breakfast table, bathing the kids in a warm glow. I let out a long, slow breath. Summer had finally arrived.
My husband walked into the kitchen. “The pool is open. Let’s take the kids over today.”
I looked at the sweet little swimsuit I’d bought for Andie hanging on a hook by the back door. Size 3 tags still dangling from one of the straps. I marveled at the fact that she was three. She’d come so far. We’d all come so far. I watched her take a piece of waffle off her big brother’s plate. I sat back in my chair and smiled. Another cold and flu season was behind us and with summer’s arrival we could finally let down our guards.
“Yes. Let’s go to the pool,” I said, retrieving Andie’s suit from the hook and ripping off the tags.
As Lee filled the soft, blue cooler with ice and juice boxes, I loaded sunscreen and beach towels into a big canvas bag.
“Maybe I’ll ride my bike and meet you guys there,” I said. “How far do you think it is?”
“Couple of miles, tops,” Lee said. “I think you should do it.” And before I knew it, he was off to the garage to dig out my bike.
As I carried the bags out to the car, I watched Lee squeeze the front tire and grab the bike pump from the garage.
My stomach clenched. I hadn’t thought about a flat tire.
As I watched him move on to the back tire, I thought about the roads that led to the pool. One was sort of winding and didn’t have sidewalks. I thought of the intersection by the High School. It could be dangerous to cross there. Lee twisted the little black cap back on the tire. What if something happened to Lee and the kids on their way to the pool and I wasn’t with them?
“All set,” Lee said walking back to the house.
“Actually,” I said, wiping my sweaty hands down the front of my shorts, “I think I’ll just ride with you guys.”
Lee looked confused, but I quickly turned away and headed into the house.
He followed me in and met me at the kitchen sink. Taking the sponge out of my hand, he put both of his hands on my shoulders and turned me to face him. “What happened?” he asked.
“Nothing,” I said. “I just want to ride with you guys.”
Lee tipped up my chin so my eyes met his. “What’s going on?”
I looked over at the kids stacking blocks on the rug. “I’m just so scared,” I said.
“Scared of what?” he asked.
“I’m scared of everything,” I said. By the look in his eyes I knew I didn’t have to explain. I knew he understood how the outside world felt so scary to our vulnerable daughter. How every cough from a nearby child, every touch on a door handle, every penny found on a sidewalk, or germ lurking in a public pool could stir up visions of doctor’s offices and emergency rooms. How it was so much safer to stay home in this protected little world we’d created.
“We can’t live that way, Kase,” he said rubbing my arm. “Look at her. She’s healthy. We’re all healthy. It’s time to live. It’s time to celebrate life, not hide from it.”
I watched Andie knock down the tall tower she’d just finished building and start stacking the blocks up again. I felt something shift deep inside me.
“You’re right,” I said.
And even though I was scared, I would end up riding my bike to the pool on that summer morning. And I would do it again, feeling less afraid with each ride. And I’d stand by the pool and watch a young swim teacher teach Andie how to blow bubbles in the water. And I’d take the kids to the aquarium in Boston and to visit friends on Cape Cod. And I’d invite neighbors over for cookouts and croquet and I’d even visit preschools for Andie. And by the end of that summer, Lee would have installed child seats on the back of both of our bikes and we’d all have ridden to the pool together.
Great story! I could really experience the depth of emotions from fear to celebration that can get triggered when one is a parent of a premie. You write with such authenticity and feeling.
The same as the above reader, I could feel the “dis-comfort” and depth of emotions this story surrendered to us. As a NICU RN Case Manager, I’m always on the other side, taking a ride with the parents, but from a totally different angle and always “in the NICU.” To see the long-term impact on a mother was eye-opening. Thank you so much for writing this and sharing your feelings, fears, and thoughts.
My preemie is 5 and I am still scared. Scared every time my husband drives her to school, what if they crash on the way there? Scared while she’s at school – what if she goes on the climbing frame and falls and bashes her hydrocephalus filled head? Scared at lunch time – what if she chokes on something in school lunch and someone can’t clear it. Scared at home – why do we live so far from a hospital. I don’t realise how much I think about it until a story like this reminds me. The reality is that I am not the carefree, happy-go-lucky person that I was. I do not exude a paranoid, depressed personality, but inside I can admit, that I AM scared.
Hi Kate, My daughter Andie is turning 11 next week and there are still times when I experience the same feelings you’re having. You need to know that your feelings are so normal and totally appropriate after everything you’ve been through with a premature baby. You’re also not alone, as so many parents report feeling the same way. Bring on the bubble wrap and let’s keep those babies save! But they came here to live and have already proven that they are so strong and can handle so much! Let your daughter be your role model and know that everyday you will move a little and little further away from that fear. If the fear continues to persist, or get worse, you might want to look into EMDR therapy (first used to treat post-traumatic stress in vets) which is what I ended up doing a few years ago when all my fears became too overwhelming. Good for you, saying the words out loud I AM SCARED. Bringing those fears to light takes away the power and opens up space for you to breathe. Put on a favorite piece of music, light a candle, breathe and believe! XO
I’m sitting here reading this in tears. I feel as though you are describing me. My 24 weeker, Aubrey Sage, was born on January 28th, 2011 due to preeclampsia at 1 lb 1 oz. She is now 9 months (5 adjusted but will be 6 adjusted tomorrow) and will be 10 month on the 28th. My due date was May 18th.
Everyday I am scared of everything. I also have a 4 yr old. I still talk to 2 of the Moms from the NICU but not often enough. I still feel as though it is hard for people, even family still, to understand why we do what we do. With the holidays coming, we are staying home. We usually go to my father-in-law’s and my parents but not this year. Some family members just don’t get it and feel I’m being overprotective. I try not to let it get to me but it is so upsetting.
Aubrey has changed my life profoundly. I keep a journal of every single day of her 4 month NICU stay. I had to stop working to be home with Aubrey so my husband works 2 jobs now. I was a legal contract specialist at a university. I want to make a complete career change and be a NICU nurse. I want to write a book. What steps did you take to have your book published?
Thank you for sharing this.