In a eulogy I recently delivered at my Grandfather’s funeral, I encouraged everyone in the audience to take time to reflect on, and be thankful for, all of the good things we have in our lives. Since I have previously been told (in a nice way, of course) that my writings on this blog have been a little on the “downer” side of things, I decided it was time to take my own advice! While my prior posts were totally honest and reflective of how I felt at the time (and still feel, to a degree), there are so many positives that our daughter’s health situation has brought to our family, both directly and indirectly. I wanted to take the time to highlight one particular way that Paige’s health has brought my family even closer together than we already were, and how our wonderful daughter has shown us what truly matters in life.
As Steph and I have both discussed extensively, we were completely blindsided upon receiving Paige’s diagnosis in December 2013. One of the first people we were referred to as a result of her condition was a vision therapist. When we initially met with this therapist about a week or so after her diagnosis, I was about as low as low could be. I had spent the whole week prior fighting just to drag myself out of bed in the morning. I had barely eaten anything, couldn’t sleep, and felt like I was living life in a daze. I didn’t understand how this absolutely perfect, beautiful child we had could have possibly received such a dire, life threatening diagnosis.
And then this therapist showed up at our house, and provided us hope when we had absolutely none. He was very empathetic and took the time to understand our situation and our feelings associated with it. But he also made it very clear that our daughter wasn’t going to be defined by a medical diagnosis, and that he would do everything in his power to get Paige as far along as her little body and mind would let her. He got me to look forward and think about all of the things I could do to help my daughter, as opposed to looking backwards and feeling sorry for myself. I will be forever grateful to this therapist and all of the assistance he’s provided Paige with, in addition to being there for my family and I during a very difficult time in our lives.
Anyway, this therapist recommended a few activities to help stimulate Paige’s vision, as her brain does not properly process the sights her eyes take in. One of the things he recommended was watching certain kinds of sports on television in HD, as the bright colors on things like hockey and soccer can be particularly attractive to any young child with a vision issue. If you knew me at all during the first 30 years of my life, you’d know that I thought the hockey thing was great, and the soccer thing, well not so much. But this was about Paige, and not me in the least, and I was willing to try anything within the realm of possible to help my daughter.
One of the first sporting events I put on the TV for her happened to be a Liverpool FC soccer game. If you don’t know anything about soccer (and I didn’t until about 6 months ago) Liverpool is one of the most popular and successful soccer clubs in England, all of Europe, and really, the entire world. And for whatever reason, Paige was immediately glued to the TV and fixated on it for the entire game. We’ll never know for sure, but I assume she was attracted to the bright red home jerseys Liverpool wears contrasting against the green soccer field they play on.
Interestingly enough, the “anthem” for Liverpool FC is a song called “You’ll Never Walk Alone,” which was originally featured in the 1945 Rodgers and Hammerstein musical “Carousel.” The song has been covered by many notable artists and bands, and part of it is even featured in a Pink Floyd recording titled “Fearless.” It officially became the anthem for Liverpool FC in the early 1960’s upon a commercially successful covered release of the song, and the phrase “You’ll Never Walk Alone” is even featured within Liverpool’s logo. One of the greatest spectacles you will ever see in all of sports is 45,000 Liverpool fans singing this song, completely in unison, during warm-ups for every home game. The words go like this:
When you walk
Through a storm
Hold your head
And don’t be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of the lark
Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you’ll never walk alone
You’ll never, walk alone
This song, and the way it unites the Liverpool followers, immediately struck a chord with me. I thought about the words and how they could be applied to my own life. It made me realize that while things didn’t necessarily work out the way Steph and I had envisioned them, that our family has so much love, so much hope, and we weren’t going to let this curveball we were thrown define us. We’ve realized that Paige’s condition may bring us some “downs” in life, but that Paige herself is full of absolutely nothing but ups – joy, love, happiness – the only things that really matter in life.
So fast forward a year, and one of my favorite activities to do with Paige is watch Liverpool soccer games on Saturday and Sunday mornings. Paige may never be able to speak any words, but I can feel the bond between us strengthening every time we watch these games together, and for those 2 hours or so, nothing else matters. Lissencephaly, seizures, and all of the other bad stuff associated with her condition cease to exist, and we just have quality father/daughter time in our own unique way. I can see the love for me that she has in her eyes, and I’m confident she knows how much she is loved by Stephanie, Will, myself, and the rest of our family.
You’ll never walk alone, Paige. You’ll never walk alone.