Man, what a year it’s been. We went from we are losing our son and not doing a single thing other than make memories until he passes to living life every single day the best we can! Here we are a year later and slowly adding a normalcy back into our lives a little more every day. We have gone to Disney twice, but what’s new right? Lol! Been on a Disney cruise and lived in Cincinnati for 130 days. We’ve attended Bengals practices and a game, lots of Reds baseball games, and even got to hang out with the legendary Marty Brennaman. We practically lived at the Great Wolf Lodge, bought and lost a camper, and spent so much more time with family and friends then we could have imagined in the first year we moved to Alaska. Most recently we have moved to Ohio. It has been a memorable year for sure!
LJ has had seven MRIs, a brain biopsy, a port insertion surgery, thirty rounds of radiation (all of which he was sedated for), began an oral chemo that he still takes daily and numerous port accesses for bloodwork. We have come to know and love the most incredible team at Cincinnati Children’s hospital. We have witnessed the Dragonfly Foundation act as the literal hands and feet of Jesus as they have loved us so well as soon as we got to Cincy last March. Emmaleigh has completed first grade and became an avid reader who is obsessed with the Little House on the Prairie. She has shown such grace and flexibility as she stepped into the role as a super sibling to someone with cancer. She was brave all the times she has been uprooted this year. Most of all she has held me when I cried or done anything, she could to make me laugh. Emmaleigh is such a secure and strong little girl.
Today we celebrated. We didn’t know what this day would look like for us and honestly, I was a bit terrified. I wanted to completely ignore the day we were given the worse news of our life. As the day got closer, it seemed like LJ was getting stronger. He is acting like a completely normal three-year-old at the moment. He is such a Barnes kid too. He is super loud, funny, and oh so loving. The fearful side of me still did not make any solid plans until this morning. I asked LJ what he wanted to do today and he said “Go to Dragonfly and see Ms. Carrie” so of course we drove the hour to The Landing! We came back home and the kids played outside in the sunshine for about fifteen whole minutes because it was still thirty-two degrees. Joshua came home and we surprised the kids with Chucke Cheese!
Watching LJ play games, watching his sister play games, and of course watching Joshua play games, we look like a completely normal family. We felt like a completely normal family. Normal feels so good when you are walking with DIPG. I have no idea what the next year will bring. I didn’t last February and I sure do not now. I know that this year we have learned to live in the moment, not take a single second for granted, and not to sweat the small stuff…ever. I have also learned not to say that this past year was the hardest year of my life. I have said that many years in a row. And well, each year presents new challenges. Now I know that God is just molding me and using my life. The only thing that makes this DIPG journey worth it is knowing that God is using all of it for good and for His glory.
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.