Knocking on the Bowman’s door this afternoon, I felt a knot in my stomach. “These two are special. Don’t mess this one up!” I thought to myself.
About three seconds later, all the preconceived notions that I had about how my afternoon was going to go had flown out the door with my little knot. Ely sat in my lap with The Hungry Caterpillar and giggled at my silly noises as his mommy got his brother dressed for their session. What had I been worried about?
Once we got outside, Titus smiled as the breeze hit his face and Ely screamed with joy at an airplane that was flying over our heads. We sang about the wheels on the bus and gave each other hugs. These are all very normal things when I work with a 2 year old and a 4 year old… But like I said, these two were special.
I heard about Bekah Bowman one weekend at church. Our pastor read a blog post from a woman who used to work in our children’s ministry and he immediately caught my attention with the title: “You Can’t Steal My Joy”
I listened as he explained that Bekah’s oldest son, Titus, had been diagnosed with Batten Disease. Batten is a progressive disease that is fatal and has no cure. What started out as a seizure one day at school has now taken his ability to see, walk, and talk. As if all of that wasn’t heart breaking enough, they had just recently found out that their second little one, Ely, had also tested positive for the disease.
But here’s the thing… The blog he read wasn’t sad. It was this uplifting post about a mother’s strength and her ability to find moments of joy in what anyone else would describe as heart wrenching pain. She wrote about their smiles and the moments she has left with them. She wrote about how Satan would not be able to steal that away from her. I sat in my seat ignoring the rest of the message as I felt something pulling on my heart strings. I needed to reach out to this woman. Not out of pity or out of obligation…But because I couldn’t believe her strength.
Bekah was everything that I expected her to be. I quickly discovered that she is everything I assume Superwoman would be. She sang songs and held Titus in the grass as Ely ran around her in circles. She smiled frequently and there wasn’t a moment that I couldn’t feel the love she has for her boys flowing through the air. In a situation where others have crumbled…This woman picks joy. Just being around her made me rethink the way that I look at so many different things.
I went into this evening with the intention of giving them a gift…and instead they gave me one.
So, why am I writing? What is my goal here?
I want to inform you. I want to let you know that there is a disease out there…that is very, very real to this family and has no cure. You can go visit Bekah’s Blog
and find inspiration from her words, or donate a dollar
to research that could help other families who are going through this. It’s completely up to you.
Tonight, I was blessed by the presence of two wonderful little boys who have a story that needs to be told. I am a better person after spending less than an hour with them, so I can only imagine what their story will do for the rest of the world.
#Team4Titus #CureBatten #CantStealMyJoy