Kendall's Journey

Christmas morning 2011, my water broke one week early, sending us scurrying to the hospital at 2 am and leaving behind our 2-year-old son with neighbors. Four hours later, as the rest of the world was waking up and opening their gifts, my husband and I delivered ours--Kendall Christine.

She was healthy and we celebrated our Christmas blessing--my heart was full of contentment and happiness only a newborn baby girl could fill.  

Then the next day, a pediatrician came in with the blow. The "birthmark" on the top of Kendall’s head was actually a congenital nevus. Being in mama-heaven, this news didn't faze me at first. Seeing my lack of concern, the pediatrician proceeded to tell me this is a big deal and we need a biopsy to make sure it's not cancerous.  

I thought, wait a minute now, don't go throwing that "c" word into things. Life is perfect, can't you see?  Leave us alone. Go away.

But it didn't and it wouldn't. 

For me, pity began 6 weeks later with our first visit to see Dr. Wood. This was a defining moment, as I became aware that her nevus was an issue and that it would not be an easy or simple task to remove it. He explained to us the tissue expansion process, which entailed inserting an expander underneath the skin on her scalp and slowly, over the course of many months, injecting this with saline and stretching the skin to a large size. This newly-stretched skin would be used to cover where the mole was once it was removed.  

Kendall seemed so fragile and I honestly couldn’t wrap my mind around the reality of this process, but Dr. Wood’s experience and confidence put me at ease. He recommended that we begin tissue expansion once she reached 9-months of age. We considered the options and made the decision to proceed--plans for October 15^th were underway. 

You could say that preparing for Kendall’s first surgery was much like training for a marathon--a marathon filled with obstacles and hurdles, that is. I knew going into it that I would have to pace myself, that this wasn’t a quick sprint and that we needed to find endurance for the long haul. 

I had stayed strong and fought off pity pretty well--right up until the second I laid eyes on my daughter after her surgery. It consumed me in ways that I wasn’t prepared for, yelling at me your daughter looks different, and this isn’t fair!

Those first few days and weeks were painful--painful in ways that I can’t explain or am too embarrassed to tell. Pity told me different wasn’t as good and even different is just plain ugly. People’s doting words of beautiful quickly turned into looks of concerns and questions. I felt like I was constantly fighting off anger and tears that Kendall had to endure all of this and that we were in this situation.

We had a battle, me and pity. 

When our 2-year-old son saw Kendall for the first time post-surgery, he looked at her with his big-brown saucer eyes in great concern. We explained to him that he could no longer play rough with sister and that she had an "owie" on her head that he couldn't touch. I thought he would be upset or lose interest playing with her.  

He just looked at me and asked, Can I kiss her? 

He didn’t see the bump, or at least not like everyone else did. Our son was free of worldly stereotypes of what makes you accepted or look pretty--to him, sister was perfect.

This was the beginning of a new attitude for me, defining my own views on what beautiful and happiness mean. I was no longer seeking the world’s acceptance or approval because, as my son reminded me, she is already perfect. My perception began to change and over the next month, pity was replaced with confidence--a confidence that told me I was strong, that we were lucky to be in this treatable situation and to take this challenge and to turn it into something positive.  

I gained confidence as I realized the things I once concerned myself with were no longer important. People’s words or reactions no longer mattered to me. I was reminded that I was being strong and bearing the burden for my daughter so she wouldn’t have to. And I realized that this process was a defining time for our family, but that it didn’t define who we are.

I can’t say enough good things about the medical team that surrounded us--they have made this process smoother and easier in every way possible. The fourth floor of Gillette Children's has been a place of transformation for our family--physically and mentally. Doctors, nurses and other parents look into my child’s eyes and see that she is beautiful. It has been empowering and enabled me to shed my fear of judgment from others, along with judgment from myself.

I have such respect for the children that we see each week and deep admiration for the parents by their side. Whether a child is facing long or short term medical needs, life-changing or life-threatening, I believe what every parent wants is for their child to feel loved and accepted--to know that they can live and thrive through their uniqueness in this world.

I once thought this journey was about crossing the finish line, but now realize it is about deciding to run.

When the day comes, I’m excited to tell her how brave she was through all of this, how she rocked our world that Christmas morning and how she continues to teach us valuable lessons about the important things in life.

I hope that when you look at Kendall, you see past the bump and notice her gorgeous deep blue eyes and pink cabbage patch lips. I hope you see a one-year-old who is on the verge of walking, filled with a passion and determination in everything that she does. Ultimately, I hope you are able to look past the differences and see her through the eyes of a 2-year-old.