Titus & Ely

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?

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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.
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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.
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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.
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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
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https://youcantstealmyjoy.wordpress.com
http://curebatten.org
http://www.gofundme.com/team4titus
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  • Deb

    Thank you so much for sharing the Bowman’s story. They have been personal friends of mine since Titus was born. They are a beautiful and amazing family who have been dealt devastating circumstances. Yet through it all, they continue to stay as positive as they can, and are such positive witnesses for Jesus. I love them all more than words can say and I pray for them all the time. I also pray that a cure for Batten disease will be found SOON!!!!!!!!! #Team4Titus #CureBattenReplyCancel

  • Sarah

    Thank you for writing this about my sister and my nephews. She really is the strongest person I know and I love those boys with my whole heart. They have changed my life too and I am so glad you got to meet them :) also these pictures are so wonderful! You are such a blessing :)ReplyCancel

  • Sharyl

    Thank you so much for sharing these beautiful pictures. You were so accurate when you said Bekah’s love for her boys fills the air. She is an amazing woman of God. She, her husband Danny and the boys are very near and dear to my heart. I pray for them often as they live through the daily trials of dealing with the devastating disease Battens. Thank you so much for spending time with the Bowman’s, capturing these precious moments, and spreading the word about Battens.ReplyCancel

  • Cindy

    Thank you for your gift to all of us. These pictures of my grandsons are beautiful and your words are amazing. May God bless you.ReplyCancel

    • Jackie Foster

      Dear Cindy and the rest of this beautiful family. Our best friends are going through this with their dear grandsons also. Out of the three siblings two have been diagnosed and there is no cure. Their son in law as the father is having such a rough time he is alienating the grandparents. They are heartbroken. I am so glad that you are able to spend what time these young boys have here on earth with them and their family. I know you already know how precious that is. My prayers are with all of you.ReplyCancel

  • Bekah and I have only emailed back and forth, but through the emails it is clear that Bekah is a warrior. I reached out to her after a dear friend (that goes to church with her) told me her story. We now have Battens support at our expo on November 4, all thanks to Bekah! We hope that both boys will be feeling well enough to join us at “the happiest place on earth” on Nov 5th. She is an inspiration and her boys are so lucky she is their Mommy! They are precious.ReplyCancel

  • Pamela Wheeler

    Thank you so much for taking these pictures and giving a beautiful commentary. The Bowmans have been like family to me for the past five years, although I love them so much it feels like they have always been a part of my life. Any time pictures are posted of any of them my heart is filled with joy and it is just like they are personally for me. We don’t get to see them in person very often now days, but they live in our hearts every minute of every day. The way they live and love is amazing and that includes their entire family. Truly amazing. Thank you.ReplyCancel

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