Photo Credit: Katee Grace and Nicki Sebastian Photography
Health and wellness touch everyone’s life differently. This is one person’s story.
I didn’t always know that I had a superhero on my hands.
How could I ever predict that the 2-year-old daughter in my arms would one day be known to me, and many others, as “Super Lily”? That she would one day leave the pediatrician’s office as a new little girl — a special heart warrior — a girl who had super powers.
But first, let’s go back to the start.
Lily wasn’t feeling very well. For what felt like two weeks, she had been suffering from a bad cold — and it was showing no signs of going away. To top it all off, we had just recently changed pediatricians, and I was nervous about taking her in to a new office.
I still remember the drive and talking with her about her new doctor. I remember the nurse and doctor greeting us when we walked in, and making us feel very welcome. I remember the stethoscope being placed on her chest… and then, a lot of silence.
The doctor on call went to grab our pediatrician and another nurse, to schedule a few more tests. Again, it was quiet. This was all within the first five minutes of us showing up.
The situation continued to escalate rapidly, almost faster than I could keep up with. But soon enough, our heart angel — Dr. Inessa Grinberg — had an answer: Lily’s heartbeat was a little too slow. They had placed a phone call to Children’s Hospital Los Angeles and they were expecting us.
Calm and confusion
I knew I had to remain as calm as possible, despite the fact that a million things were running through my head. How was this the first time I was hearing about this? How long had her heartbeat been slow? Does Children’s Hospital take insurance? Where is Children’s Hospital? I know hospitals can be cold, do I need to stop and pick up a jacket for her? Will they have food for her? Should I stop and get some?
It was the longest and most emotional drive I had ever taken.
When we arrived, they knew who we were. They welcomed us in. They guided us around to do many different tests. I was amazed at how brave and calm Lily was being, while I tried my very best to be the same.
And then I just waited. Waited for the answer.
“Your daughter has a third-degree heart block. It’s where the top of the heart doesn’t communicate with the bottom. At some point, she will need a pacemaker. We just aren’t sure when. We will put you in contact with a specialist here.”
As you can imagine, many questions and answers followed. They told me to go home with her. They guaranteed that she was safe, and that a specialist would call the next morning. They would help us navigate where we go from here.
My husband and I paced around the house. I don’t think we even slept.
The next day, we got a call from our new specialist, Dr. Yaniv Bar-Cohen. He walked us through everything: What a pacemaker was, when a pacemaker would be needed, and what steps we needed to take to get there. And we wouldn’t get there for almost another six more months, after a lot of monitoring and follow-ups.
The dawn of a superhero
How do you tell your 2-year-old that her life will never be the same? That her heart needs something to be attached to it to keep it working? After a lot of pondering about what types of stories kids respond to and can engage with, it came to me: superheroes.
I explained to Lily that her heart monitor was actually a “super charger” for her heart, and that one day soon, we were going to put an actual “super charger” inside it. On surgery day, I brought her a cape. We talked about how she’d soon wake up as a superhero, and how her powers would reveal themselves over time, and how I couldn’t wait to see that happen.
It wasn’t easy. But the more I told her the story of “Super Lily,” the more I began to truly believe it, too.
A new approach to motherhood
The day that Lily became “Super Lily” changed us all in so many ways — good ways. Instead of thinking about all of the challenges we would no doubt face, I started to look at the way I was approaching them. As a mother, I realized that for this little superhero, I am the person to whom she looks for her bravery. It’s my job to hand her the tools and show her that she has everything she needs to be brave all on her own. It’s up to me to model for her how to treat herself, her body, and her perception of herself as well as others.
To that end, both my husband and I have become so much more adventurous as parents than we already were. We are so less crippled by fear, and even more open about allowing Lily to be whoever she wants to be. I have become more determined than ever to make Lily feel powerful, beautiful, and positive, because she is different. And being different is going to allow her to contribute so much more to the world and meet the most amazing warriors, like the incredible families of heart warriors and heart parents, who have been such an invaluable support system for my family.
We have enough time to worry. (And boy-oh-boy, do we.) But within each of us, and especially within warriors like Lily, is the capacity to do great things. We can encourage and support by living in the moment, and allowing our kids to just be kids.
I would never say that this has been an easy journey. And as a parent of a child with a pacemaker and heart condition, I think it’s impossible not to think of the future and what that will look like for her.
My advice is to let go of the fear, and live in the moment with them. We are all well aware of our challenges and how they affect our every day. But we can appreciate our strengths, too. And if we do that, we can create positive change within ourselves, and within others, too.
Kelly Mckee-Zajfen is the mama to 5-year-old twins, George and (her heart warrior) Lily, and wife to an amazing husband, Julian. When she’s away from her little ones, she’s the owner of a beautiful little girls’ romper line, , as well as a co-founder of the , a membership-based auxiliary group that supports the work of the . The Alliance of Moms creates educational programs to empower young moms and dads in the foster care system in Los Angeles. Connect with her on or , and learn more about the Alliance of Moms on or .