January 09, 2013 · Personal
I feel the only way to really dive into talking about Owen is to introduce our precious boy to many people who never knew him. Because his condition was so fragile and our three weeks at the hospital were so intense, we were not up to visitors. Mustering up the strength to make it through every day was all we could handle, and Owen was the only one with which we cared to visit. His health was our top priority, so only a few people had the privilege of getting to see him in the PICU in our attempt to protect him from germs as we waited on a new heart.
Rather than try to fit everything that Owen was into one blog post, I thought I’d start out by sharing what I wrote for his funeral. I’m amazed that I could even form a coherent thought just a few days after losing a big piece of my heart. In the midst of trying to put the grief on hold long enough to make it through appointments with the cemetery and funeral home, somehow, I managed to write about someone who was taken from us unexpectedly and far too soon. I had to confront the pain head on and power through. But again, I was his mom. Who else was going to do it? He deserved to be known by everyone and we were the only ones who really KNEW him. This was our way of explaining to family and friends who our son was. To them, he was our baby boy…waiting on a heart transplant. To us, he was the world.
“Owen had many nicknames. In the womb, we called him The Buddy. During his time at the Cleveland Clinic, the nurses and doctors affectionately called him names like “Nugget, Mr. Owen, Little Man, or My PICU Boyfriend.” Shortly before he was born, Dr. Stewart (Owen’s surgeon) walked into my room where I was awaiting my c-section and asked us if we had a name picked out. Johnny gave him our two options, and without hesitation Dr. Stewart said, “Owen. Definitely Owen.” And that was it. Owen it was.
Owen means, “Young Fighter,” and with him being born 4 weeks early, he was young indeed. Although he was young, he came out of the womb weighing 6lbs 9ozs… my EXACT birth weight full-term. He was already a fighter. The reason his heart condition was so rare, is because most babies never make it out of the womb. On September 27 at 6:51pm, he had already beaten the odds. He was here.
He continued to beat the odds for the next 3 weeks. He battled issues with heart rhythms, kidney function, blood pressure, breathing problems, fluid on his lungs, IVs, swelling, unexplained fevers, chest tubes, bone marrow testing, and numerous blood workups. Even through all of this, he was such a content and precious little boy. What a sweet spirit he had. It was impossible not to love him…even the doctors and nurses genuinely loved our son.
John, his middle name (after my husband), means “Gracious Gift of God.” What a gift he was. On the outside, Owen was perfect. To look at him, you would never know he had a life-threatening heart condition. To us, he was everything we could ever want in a son. He was the most adorable thing we’d ever seen. I found myself nicknaming him “handsome.”
The first time we saw him, we didn’t even notice the wires and tubes. We just saw Owen, and he was beautiful. His little button nose, sweet little cheeks, and full head of the most amazing wavy brown hair. The doctors and nurses that would come into his room couldn’t help but stroke his hair and talk about how cute he was. After a while, his cowlicky waves were rubbed so much that he’d look like he had a combover. We’d laugh that he had hair like a “politician.”
Owen was so much like his dad. From his sweet spirit to his body shape to his precious facial features…he was a spitting image of my husband. To me, that was the best possible gift. Knowing that my son was already like his father, the most compassionate, caring person I’ve ever known. The only genes he got from me were the wavy hair and a little bit of feistiness.
That feistiness was a quality that I especially loved about Owen. It showed the fighter in him. During diaper changes or his frustration with wanting to grab and pull on something he shouldn’t, we’d see his face scrunch up like he was so mad…just wanting to cry and wail. Before soothing him, I would take a picture to capture that side of him. These feisty moments were rare, and a reminder that he was tough and living up to his name. One day, he wiggled his arm right out of his blood pressure cuff when the nurse was out of his room. This was no easy feat. He was a determined little man.
Anytime we’d walk in the room and see socks on his hands, we’d look over at the nurse and she’d say, “Pulling on his tubes…again.” Sometimes we’d be on “hand patrol” with each of us holding one of Owen’s hands, stroking his head and singing to him…just to soothe him and lull him back to sleep. Sometimes when he was sleeping, he wanted space– much like his mom. Sometimes, he wanted that soothing touch. Just to know that we were there.
Eventually, the tubes and wires didn’t bother him. He would gently hold onto his breathing tube as something comforting to grasp. When he couldn’t manage to maneuver his hands up to his face with all the wires, I would hold my hand on his cheek..giving him that skin-to-skin touch he was longing for. When the normal songs just weren’t comforting for Owen, Johnny would hum OSU fight songs that would calm him down immediately.
He was also soothed by a pacifier. A purple pacifier. A color much opposed by his father. Owen’s love for his pacifier lasted for 20 minutes. For days after that, I would try (with no success) to get him to take that pacifier again. His little lips would lock up as if to say, “Nope. Ain’t happening, Mom.” The Young Fighter was not giving in.
Sometimes a little orneriness would come out, too. It never failed that every time I would go to the back corner of the room to pump, Owen would open his eyes. Opening his eyes was something that didn’t happen too often, and it was as if he knew Mom was occupied and he could have some Dad time. Some time with his best bud.
One day, we found out we could kiss him. Before that, we were afraid because of germs. Sometimes, he’d soak in those sweet kisses. Other times, I would go in for that kiss and he’d scrunch up his face. I would tell him, “You make that face and Momma’s gonna kiss you again!” And I’d plant another one.
We loved being in Owen’s room in the evenings. The night Owen was born, I insisted Johnny take me down to see him. He wheeled me down and around the dimly lit hallways at 1am to Owen’s room. There was no way this c-section Momma wasn’t going to visit her son that first night. These nightly visits continued even after I was discharged from the hospital and were our favorite times of the day.
It was so peaceful in Owen’s room at night. The lights were dimmed in his room, doctors weren’t coming in as much. It was just us. Our little family of 3. We would stand at his bedside, humming to him, holding his hands, stroking his hair, kissing his forehead and cheeks, and telling him how much we loved him. This was our routine, and the only thing we wanted to do.
Every night before we left, we would lay our hands on him and pray aloud. We joke that Owen always had perfect timing, even in the womb. Anytime we prayed for him or with him, he would move. In the womb, he would start kicking each time we prayed for him. In the hospital, he would squeeze our fingers as if he was agreeing with us in prayer.
He would always squeeze my hand very gently, almost stroking my hand with his. So sweet to his Mom. Then he would squeeze Johnny’s finger as hard as he could. Hard enough to where we could see his little finger tips turn white…as if to say, “Look how strong I am, Dad!” He knew us.
There were many special moments that helped us get from one day to the next. Like moments where unexpectedly, Owen would open his eyes and look right at us. He would focus back and forth between the two of us, and would follow the sound of our voices with his eyes. These moments didn’t last long before he would drift off to sleep, but these were some of the most precious moments of our lives and were enough to get us through. They were enough to sustain us and fill our hearts for whatever the next few hours entailed.
We never heard him cry. From the moment he was born until he passed away, the only noises we heard were little squeaks and sounds that came from his breathing tube. We grew to cherish these sounds and hold them in our hearts.
The night we got to hold him for the first time was without question the best night of our lives. As they moved him from his bed into my arms, he opened his eyes briefly (as if to see who was holding him) and then drifted off into a peaceful sleep. We had never seen him so content. He was loving being snuggled by his mom and dad.
We never left his room without telling him that we loved him. We would tell him we loved him what seemed like hundreds of times a day. Whether we were spending time with him at his bedside or getting ready to go to the cafeteria for lunch…we always told him we loved him. Usually multiple times before ever making it out of the room.
We did what we could to comfort Owen and show him we loved him. Even though we missed out on getting to do “normal” parenting stuff, we got to know Owen. We got to know his cues. We knew when he needed to be changed, or when he was getting irritated from some congestion in his breathing tube. We knew what to do to comfort him. We knew that despite the medications, the wires and the tubes, he knew we were there. He recognized our voices. He recognized our touches.
We were so lucky to be able to hold him and comfort him in his last hours. Surrounded by family, we held him, sang to him and prayed over him. He looked so peaceful. Our Young Fighter, our Gracious Gift of God. Our Buddy. Owen John, your Mom and Dad love you so much. You will forever be a part of us and we will see you again…”