A Superhero Flies High

I consider Sommer a dear friend . . . and yet I have never met Sommer in person.

I have never spoken to her on the phone.

I do not know what her voice sounds like.

High & soft or low & gruff (I am leaning more towards high and soft).

If Sommer walked by me on the street I might easily pass her by without noticing.  

I do not know her style or her true hair color or if she is obsessed with Royal Family (a very important fact).

I do know she loves the Patriots and the Boston Red Sox (congrats).

There is a chance she actually keeps up with that all K family (I really hope not) and she might not consider Back to the Future one of the greats (again, that would be sad).

And still . . .with all these unknowns I consider Sommer a friend.

How do you befriend a person you have never spoken to? Easy, the internet. Sounds pretty creepy but trust me Sommer is a friend! 

Shortly after we received JD’s diagnosis I became mildly (extremely) obsessed with learning about other families who were living with a rare diagnosis. Comforting is a strange word to use as we navigated our own rare syndrome. Nevertheless, we found comfort in strangers as they shared their lives living with unpronounceable words attached to their children’s medical history.

Through my brave cousin, who openly shared the story of losing her 5-month old son with a unique organization Tiny Sparrow Foundation, I started to get the full picture of these courageous families.  Tiny Sparrow is a non-profit founded to provide lasting memories through photography for families with children facing life-threatening illnesses. Daily, I would look for updates and new stories of inspiring families. Some stories were met with smiles, some with tears but most of all they were met with hope. The hope that once JD was born we too would be smiling in front of the camera.

One day in June 2012 while rocking JD in the NICU, I came across Owen’s story. To say Owen’s eyes were the first things I noticed is an understatement.  The soul and life expressed in his baby blues had me coming back to the story throughout the day. Within the Tiny Sparrow story, Owen’s mom shared a link to her blog. Clicking on the link I planned to spend a few minutes skimming Owen’s story. Two hours later I had soaked up every word ever written about Owen . . . more than once. I became attached to this little boy and his loving family.

At two months of age, Owen parents, Sommer & Pete, were given the news Owen had Leukodystrophy, a very large word for abnormalities of the white matter of his brain. Thinking you are in the home stretch of the newborn phase to finding out life altering information is impossible to describe.

Immediately, I connected with Sommer as I read her raw emotion. “In one swift moment we went from thinking our child had three benign (colic, reflux, and dairy intolerance) problems, ones he would likely outgrow by three months, to realizing that our son is not going to live.” I know those words by heart. I reread those words more times than I will admit. At the time I was living those words. Our baby went from having a few anomalies on an ultrasound screen to being diagnosed with a syndrome that may take him from us too early.

At that moment without Sommer even knowing my name we became friends. After a few days, I continued to go back to Sommer’s Loving Owen blog. I finally decided to write a comment including a link to our family blog. There was something about Owen and Sommer and their family that made me want to send a hug and an “I get it.”

A month later Sommer commented on one of my posts. You would have thought Duchess Catherine herself commented with how excited I was to hear from Sommer. Hence, we began the mom version of a Bromance (maybe a Momance???). Over time we made it Facebook official and became friends making it easier to follow each other’s families. In June 2013, we nominated Owen to receive a Tiny Superhero cape as he embarked on his journey with GTube surgery. He wore it proudly on the back of his wheelchair everyday. 

From the beginning, Owen’s life had a time limit according to the world of Leukodystrophy . . . and yet, through some very rough times and illnesses Owen pulled through. Owen and his family were able to celebrate numerous holidays, family celebrations, sporting events, and most importantly birthdays. In August, Owen celebrated his 2^nd birthday! In the Wolf-Hirschhorn world the 2^nd birthday is a BIG one. Things change after the 2^nd birthday. Statistics change. While Owen does not have WHS when I read he celebrated his 2^nd birthday I celebrated for Sommer.

The past few months have been crazy busy for the Gawels and I have been a bad friend in not being able to read every post and update on the day they are posted. It bums me out because I do so love hearing about Owen.

On October 16, as Gramps read to Connor and JD slept in my arms I had a few minutes to read about my little buddy Owen. Sommer had posted a brand new update that day. Prefect! What a great place to start then work my way back over the few I had missed.

It is unexplainable why on that day I had a few moments to spare. Why on that day did I choose to catch up with Owen? On that same day, the one day in months I had a precious me time Sommer posted these words: “My beautiful baby boy earned his angel wings this morning.” Oh how my heart hurt for Sommer. I was stunned. How could I be so selfish and not have kept up with the blog over the previous month? I quickly read over the recent posts looking for clues of this outcome. I wish I could be there for my friend Sommer. I debated about flying to the service of a little boy I had never met because that is how close I felt to Owen and his family.

Explaining the connection is difficult. Any parent hurts when they hear another parent has lost their young child because it is something most can never imagine. However, when a parent has a medically complex child hearing about the loss of another buddy is gut wrenching. Because as that parent I have imagined what it would be like to lose my child. I have had the hard discussions with the experts and my husband. And I have cried at the fear of the unknown.

Owen has been gone for two weeks and Sommer is still my friend. She continues to follow JD and has sent loving prayers this week as he tackles the paranormal flu. Right now all I can do is honor Owen the best I can and send a virtual hug to Sommer.

As life’s unknowns continue to pop up all around us one thing is for sure  . . . the city of Boston needs to throw a fist bump towards the clouds and thank their strongest, littlest, red headed fan for a World Series win. Some may say the beards won it for Boston but I say they had an extra angel in the outfield.

Keep flying high Super Owen!