‘She is probably tired.’ There was no movement. I found a glimmer of hope. I’d be with her every minute I could.’: Daughter born with Cerebral Palsy, ‘Her strength is inspiring’

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“When I held my second child in my arms for the first time, I experienced something new. Feeling her nurse, spending our first night together, and taking her home with me from the hospital felt like small miracles over and over again. It was a deep reflection of God’s grace, and I’m so grateful that these ‘normal’ moments are a part of my story. This wasn’t our story with our first birth.

After Jaxlee was born, I endured some of the deepest pain in my life. I was grieved by the uncertainty of her health and her future. If you know our story at all, you know that Jaxlee is a miracle. She’s overcome SO many obstacles and it shows with every new milestone. Her joy is contagious, and her strength is inspiring. But it didn’t start out that way. Here is that story.

Shortly after giving birth, holding my brand new baby girl, I stared at the sweet little face I had spent the last 9 months (or my entire life?!) dreaming about, just like every other mom. Having read all the books, I wanted to start breastfeeding right away. I asked the nurse to coach me through a proper latch as I attempted to feed my baby. I got her in the perfect swaddle, the right position and placed my nipple onto her ruby red lips. Nothing happened. Her mouth didn’t make that cute little suckling noise I had imagined, and she didn’t attempt to gesture toward my breast in a rooting manner. There was no flutter in her eyes or movement from her body. The nurse tried to wake her up by sticking her finger on her lips and into her mouth, but she still didn’t suck. None of the books prepared me for this.

Courtesy of Emily Barton

At first, we were assured, ‘She is probably just tired from the delivery. Just let her sleep.’ However, as time went on, nothing changed. She still wouldn’t eat, she wouldn’t suck, wouldn’t root or indicate any evidence of being hungry. This is when I started to panic.

Late into the evening, the Neonatologist came in and told me and my husband, ‘I think Jaxlee should be admitted to the NICU for observation.’ This was definitely not something I was prepared for, or even thought was a possibility. Shortly after the Neonatologist left, a team of medical professionals came into our room, and swept Jaxlee away.

Jonny and I were left in the room with no answers and no baby. I sobbed as they took her out of my arms and into the NICU for testing and observation. I sat there, exhausted from the birth and delivery, overwhelmed with the feeling of loss. I felt helpless. I wanted to hold her, I wanted to kiss her, I wanted to smell her. But she wasn’t there; my arms were empty.

As soon as I got the green light, I walked over to the NICU to see her. I will never forget the way that place smelled and felt. It was a sterile room, with millions of cords and monitors. As I walked in to see her for the first time, I was devastated to see her hooked up to the machines and monitors. She had a Nasogastric (NG) Tube, an IV, leads on her chest, and pulse pads on her feet. I thought, What happened to my baby?

I held her for as long as I could, until the nurses told me, You need to go back to your room and get some rest. They could tell I would have been there all night if they allowed it. I had to say goodbye to her for the second time that day. My heart shattered as I left her.

Courtesy of Emily Barton

I went back to my room and did the only thing that I could do: I started pumping. I knew that if I started pumping and could get my milk going that Jax would be able to get my milk through her tube. After I finished, I cried myself to sleep.

First thing in the morning when I woke up, I went over to see Jax. I had missed her so much and my arms couldn’t wait to hold her again! I brought all my pumping supplies with me, and I was prepared to camp out there all day. I wanted to hold her and be with her every minute I could!

This started our first routine. It gave me a small sense of control as her mom to care for her, and I committed to it with every fiber of being. I would go back to my room to use the bathroom, or to eat a quick bite but as soon as I was done, I would hustle back to the NICU.

After a few days of that first routine, it was time for me to get discharged. One of the layers of trauma in having a child go to the NICU is that at some point, you have to leave the hospital while your baby stays. It goes against everything in you as a mom. I was dreading it.

The medical staff wanted me to go home and rest, which felt so backwards. How could I rest knowing my baby wasn’t doing well? They insisted I go home to at least shower. So, they loaded me up in the wheelchair and wheeled me out. Sobbing, empty handed, listening to, ‘Lord I Need You’ by Matt Maher, Jonny and I left the hospital without our sweet baby girl.

Jaxlee spent another three weeks in the NICU with some amazing nurses. We shuttled back and forth between our home and the hospital. Any time I wasn’t with her, I was pumping or doing whatever I could to mother her from afar.

We eventually brought her home and slowly but surely adapted to a new way of life. It took two years for the doctors to diagnose her with Cerebral Palsy. It was a long time to live in such deep uncertainty, not knowing exactly what she needed.

Courtesy of Emily Barton

But early on we learned that, even in our darkest hours, we could find joy. Jaxlee’s smile can light up a room and any social media page. And it’s NOT just because she’s so cute! She shines with joy but also resilience. She has weathered SO much since those first few moments after she was born and continues to move mountains every day.

I’ve experienced deep loss in my life, on multiple occasions. But I believe when you endure deep pain and trials in your life it increases your capacity to experience joy and gratitude.

Courtesy of Emily Barton

When I look at my two girls, two sisters with very different stories, I can see just how true that sentiment is. We experience SO much joy in our lives because of Jaxlee, especially because of how hard she struggled and still struggles. And in the same way, we experience SO much joy with Braelynn, whose story is just as important in our family as Jaxlee’s, even though it’s different.

Wherever your story is right now, whether you’re a NICU warrior or going through your own loss, I hope you can experience the glimmer of hope in the middle of the pain. It’s there, even if it’s hard to see.”

Courtesy of Emily Barton
Courtesy of Emily Barton

This story was submitted to Love What Matters by Emily Barton of California. You can follow her journey on Instagram and her blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories of strong children here:

‘What will my child become?’ My differences were thought of as less ‘cool.’ I was the target of bullying, both verbal and physical.’: Man with cerebral palsy says ‘you are more than the struggles you face’

‘My husband divorced me after my baby was born. At 28, I had to move back in with my parents as a single, special needs mom.’: Mom to daughter with Cerebral Palsy finds new perspective on ‘true happiness’

‘Did you hurt my baby?!’ My ex replied, ‘No!’ I looked into my 3-month-old’s eyes. Blank stare.’: Mom ‘heartbroken’ after ex-husband’s abuse causes newborn Shaken Baby Syndrome, Cerebral Palsy, blindness

‘Have you lost your MIND?’ The thought of her lying alone was too much. There’s NO WAY we could take on 4 fragile kids.’: Couple pursues special needs adoptions, ‘We’d do it all again’

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