This past Friday I had breakfast with a complete stranger. He was one of my 1,199 Facebook friends. He had commented on a picture I had posted and said he was going to be in the neighborhood and asked if I would like to get together for breakfast. Brenda and I wracked our brains trying to remember where we had met him and who he was. As we stalked him online, we discovered that he is the father of a young boy with Batten Disease, the same disease David had. While I am very selective as to who I accept as “friends” on Facebook, I accept anyone who is a part of the Batten family. One minute into our deluxe wrap of spuds, eggs, cheese, veggies, and bacon at the GoodEggs Restaurant in Ephraim, Wisconsin we were no longer strangers but brothers and friends.
As I listened to him share his story of diagnosis, grief, desire to rise up and discover a cure, and the daily battle as a caregiver, husband, and daddy, I was transported back to the early days of our journey with Batten Disease and our care of David. It was all I could do at times to hold back my tears. He was a good daddy, a good husband, trying his best to live in their “new normal.” Their lives are now filled with IEP meetings, feeding tubes, medical equipment, the need for a bigger house, loving and caring for their son’s twin sister, and the management of a new experimental medication. There is little doubt that their new normal with change many times before their journey with Batten Disease is over.
It’s been almost ten years since David passed away. For the most part, I thought I had grieved, healed, and “moved beyond” the pain of losing my son. Oh how silly I can be. Once again I was reminded that “our new normal” is still changing. The one thing that remains consistent is the truth that David is no longer here with us. His contagious laugh has been silenced. His compassion for others is no longer experienced. The tapping of his white cane no longer heard. This is a part of our new normal. My breakfast with my new friend challenged me to do two things:
- Don’t fear, but embrace your “new normal.” The sooner we do this the sooner we find acceptance and joy in the journey.
- Don’t forget those who are still on the journey as they struggle to embrace the “new and changing normal” being forced upon them.
I am so thankful for my new breakfast friend. Our conversation has made me think about the joy it was to be David’s dad. It reminded me that I need to be more proactive in reaching out to friends I know who are struggling with their “new normal.” It has motivated me to be more intentional in praying for the amazing moms and dads who love and care for their children touched by disability or special need. So new dear friend, the next time you are in Sister Bay let’s meet at Al Johnson’s. The Swedish pancakes and eggs and Swedish meatballs are to die for. See you then!
PS: If you are interested in hearing my friend’s story and learn more about their family click this link: https://www.youtube.com/watch?v=-2IQ2F52-O8&feature=youtu.be&fbclid=IwAR2nKwSPnIV0klByuJ8nPpXoLKIPzFFPFH35knhbDmiXNLtyNKLmCMkymJ4