A Beautiful Soul

Last week was one of those weeks that seemed to last an entire month. You know those weeks. As far as Caroline is concerned, it was a great week.  We had a lot of good moments. Moments filled with laughing, dancing, and clapping, in spite of another ear infection and an emerging tooth. I remind myself when we are up at 1 am that I prayed for that tooth. When we were at her ENT appointment last month, I expressed concerns that she hadn't started teething yet. Am I crazy? Well, yes, but that's a well-known fact. See, like most crazy moms, I worry compulsively. I lie awake at night thinking of things to worry about, and one night I worried about her lack of teeth and not being able to have cake at her 1st birthday party. Now you get a glimpse into my brain- it's like 2 monkeys fighting over an ice cream cone in there. Anyway, back to the ENT appointment, Dr. Hartzell told us she probably wouldn't start teething until over a year old. Well, in true Caroline fashion, she decided to prove him wrong and I happily and tiredly announce we have a tooth, people.

We also had a big adventure at ACH picking up our new helmet…and it's pink. I've had questions about why she had to get a new one, well her head grew, significantly. If you remember back in January, we saw all of our teams and this head growth was a concern for her neurosurgeon and craniofacial surgeon. Long story short(er), they are going to continue monitoring her and want to see how much the new helmet will shape her skull before attempting surgical interventions. 

This brings me to other news. News I don't want to share. I didn't want to even attempt writing about this because my words will fail miserably to describe the love, respect, and appreciation I have for this woman. 

This is Dr. Honnebier, affectionately called Dr. HoneyBear around here, Caroline's craniofacial and plastic surgeon. She died, very unexpectedly, last week. I learned of her passing when we returned home from the helmet fitting. This amazing lady performed the cranial surgery and assisted in our lip repair and was to perform many additional surgeries for Caroline. It is hard to describe, but when you entrust your child's life with someone, you develop a strong bond. When I learned of her passing, it felt like the wind had been knocked right out of me. Losing her has been like losing a beloved family member. That may sound extreme, but she had spent more time with Caroline than a lot of our family. We first met Dr. H when Caroline was 4 days old. She had just had her first CT scan to help determine the severity of her choanal atresia. Then, a pediatrician came in and told me she apparently had craniosynostosis. She said, "it's mainly cosmetic, but they will probably want to do surgery eventually." Well, the next day we met Dr. H and we learned she would need surgery but it was much more than cosmetic. I recall a nurse describing Dr. H as "tall, blonde, and beautiful." I had this American idea of  Barbie beautiful in my mind, but that wasn't Dr. H. She was tall and blonde, but she was no Barbie. She was much more than my shallow preconception. She was striking. When she wasn't wearing scrubs, she wore black leather and boot socks with skulls and crossbones. She had tattoos and piercings. Honestly, she looked like someone you might avoid on the street. She was different and she embraced it. She had a commanding presence and she made you take notice. I remember she had 2 young residents with her and they looked exhausted just trying to keep up with her. She just looked at Caroline and ran her fingers precisely over her head and knew in an instant what we were dealing with. She explained the surgery and what would happen if we didn't do surgery- inhibited skull and brain growth, mental delays, and physical anomalies. I appreciated she took the time to explain the medical reasoning but didn't overlook the importance of physical appearance. She said in her strong Dutch accent, "you want her to be able to play softball and wear a regular helmet just like all the other girls." While other doctors were cautioning us about potential delays, Dr. H was talking about my girl in terms of doing "normal" kid things and I appreciated that. She looked at me, sitting there with tears welling in my eyes and took the time to assure me that I didn't do anything to cause the anomalies and described them as "accidents of nature." This is what made her a rare jewel among doctors,  Dr. H was a straight shooter but she was also compassionate. Dr. H loved what she did and devoted her life to helping children and families like ours. She was truly invested in Caroline and her future. She advocated for her. When our buddy, Helmet Guy, was giving us some trouble, Dr. H wasn't having any of it. When I spoke to her nurse about needing a different helmet, I expressed my concerns about how Helmet Guy would react. She said, "Dr. Honnebier is going to call him personally and she's a strong woman who doesn't  take anything from anyone" then added with disdain, "especially a man." I do believe I heard some finger snapping there.  True to her word, we were back in his office in a few minutes being fitted for a new helmet. At our first meeting, she told us about a camp she established called Camp Laughter. It's a camp for children with craniofacial anomalies and their families to connect with others going through similar struggles. We were looking forward to going someday, and still plan to, though it won't be the same without her there. 

How do you say enough for someone who brought so much hope to the world and changed so many lives? You can't. So, as I said, my attempt is feeble and my words fail, but thank you, Dr. HoneyBear. I know we will see you again.