Life: Unfiltered

Today I had a crazy idea. I thought I would try to take a picture of my child. Now, a picture, isn't that difficult. I take several pictures of Caroline every day. Today was different. We were playing and having a great time. Amidst the laughter, I was busy snapping pictures trying to capture each smile, each nose crinkle, each mischievous look. Then, during a nap time, I glance at the dangerous distraction that is social media. Everyday, with Facebook, Instagram, and, my personal favorite, Pinterest, we are  inundated with perfect pictures of perfect homes filled with perfect families and perfect furniture. Suddenly, what once seemed "just right" seems somehow lacking. The thing about social media is we can filter our images and how we are perceived. Nobody wants to post a picture of a burnt dinner with a #homemadegourmet. We post the good stuff- the picture of the happy-Pottery-Barn-catalog family at the pumpkin patch (#blessed, #fallfamilyfunday) when, maybe, the whole experience  was absolute misery( #carridefromhell.) There's nothing wrong with posting the good stuff- I mean that's really what we want to focus on in life! If I can just be real for a minute, I honestly don't want to scroll through my newsfeed and see a post about a kid crying or one filled with complaints about a lazy spouse. I don't believe in using social media as a weapon- especially one formed against your family. That being said, I had a lesson today in filtering and being present.

I got some great pictures of Caroline being Caroline and fully enjoying it.

Then I saw pictures of babies in bows. Caroline has a dresser drawer full of bows that she never wears. I thought, "These pictures are great but how about a few dressed up?" Here's how that experiment went down…

"Uhhh, Mama? You know I don't wear bows." 

"Yeah, this thing is coming off in approximately 7 seconds." 

"Grrrr….Mama makes me so mad. Just wait until she gets that frizzy hair within my grasp. She will pay for this bow incident. "

"Bwahahaha! Victory is miiiiiine!!"

As I am unsuccessfully taking these staged, bow pictures, I notice how toys have taken over my living room. This room used to look nice. There wasn't always towels piled in the chair or blocks strewn across the floor, or a giant baby yoga mat in the center of the room. If you look closely, you can also see a brown Newfie on the leather couch- now, she has been a permanent fixture. I started feeling frustrated with myself…and then it hit me. I can spend time filtering my life or I can actually enjoy what is in front of me. I didn't get any good pictures of Caroline in a bow, but I got some great pictures of her being her and that's all that matters.

 Embracing transparency involves living an unfiltered life. I will keep focusing on the good things but I want the good to be genuine and not manufactured. Yes, I want my house to look nice along with the people in it, but mainly I want to spend each minute enjoying life with these people. My people.

Joy in the Wait

Can you do "enough" for your child?

That's the question I have been asking myself lately. The question I want to ask others.

When you look at your child, do you feel this overwhelming sense of satisfaction that you have done "enough" as a parent? That you have succeeded in raising a healthy, well-rounded, respectful individual who contributes to society?

For the baby who had a rough start…
Do you ask "Am I working with her enough to help her meet these milestones? Am I bonding with her enough?"

For the child who was always ahead of milestones but is now struggling in school…
Do you ask "Am I doing enough to get her the right tutoring or counseling? Am I pushing her enough? Am I pushing too much?"

For the adult who started on the straight and narrow but lost her way…
Do you ask yourself, "Did I take her to church enough? Did I help her too much? Did I let her fail enough? Did I let her fail too much?" Because doing "enough" doesn't always mean doing for your child but teaching them to do for themselves.

I have come to the conclusion that I will always feel I have come up short, that I could have done more…but I want to keep trying. This brings me to our current point in this crazy ride. We approached a fork in the tracks. We chose a path and now we're sort of at a standstill on a steep climb. Is that vague enough? How many times can I use the word "enough?" Well, until we know more, I don't want to share specifics just yet, but for those of you who ask me how you can pray, here it is...

Please pray for peace during this climb. Pray for peace over this decision to choose another course. Pray for us during the waiting. Although we feel an urgency, it doesn't mean everyone else feels that urgency. I'm not the best at waiting- understatement of the century. I like doing. Pray I will hold my thoughts (and tongue) captive to Him while we wait. Although there is pain and fear in the wait, my mom reminded me yesterday that there is also great joy- like nothing I have ever known.

"Be still in the presence of  The LORD, and wait patiently for Him to act…" 

~ Psalm 37:7 

"You both precede and follow me. You place Your hand of blessing upon my head."
~Psalm 139:5 

Thank you, fellow riders. 

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.