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The Last 4th of July

We had a wonderful weekend celebrating the 4th of July this last week. We had family in town, hot days - perfect for swimming, the kids enjoyed the fireworks, and we had some amazing food. You couldn't ask for more. Not that there weren't any stressors, you know whiney kids and all...It occurred to me during the weekend as I was feeling overwhelmed by trying to keep my kids entertained as we waited for it finally to be time to let off and watch the fireworks, how out of proportion my "overwhelm" was. I say this because I know 2 very troubled families right now. One, whose daughter, Sophia, is hanging on for dear life. She is hospitalized, in pain, and dealing with progression of her DIPG tumor. She was giving 30 days to live. The other is a newly diagnosed (with DIPG) little girl, whose facing daily radiation. Her parents are pining over which direction to go for ongoing treatment - which means which trial medicine to choose from. Bleak. My pain, my stressors are NOTHING. NOTHING! I am all for calling a spade a spade and being honest if something is hard or challenging. But I also feel like it is vital to keep life in perspective. The world is not going to end if my kids 2 and 3 year old are a handful or the weather isn't exactly what I wanted or the timing of things aren't perfect. I am not lying in a hospital bed watching my daughter's painful, labored breaths or facing the likelihood that my daughter only has a year to live. That simplifies things doesn't it? I have a feeling they would give anything if their only problems were hot weather and a grumpy toddler.

It was the summer of 2013 that we knew Wayland was dying. It felt like our world was coming to an end and it seemed like every body else was consumed with how to entertain their children; they were out boating, swimming, making plans. I remember longing for a life as simple as that. Each of the summer holidays is peppered with painful memories from that year, including the 4th of July. We chose to take Wayland to see our family in Wisconsin. My parents have a great view of the city fireworks from their house. We knew this was his last 4th, so what better way to spend it, surrounded by family. He experienced his last firework show, last movie in a movie theater, last drive around the cranberry marsh (where my father-in-law was living at the time), last night sleeping at Grandma and Grandpa's, last road trip. We had to face the reality that we would never bring Wayland back to Wisconsin with us again. It was excruciating waving good-bye.

We live in a pretty complicated world right now, but it really seems simple when you have the peace of mind that for now, I have a roof over my head and my children are alive and healthy. It is not this way for 2 very special families in Indiana right now and hundreds more around the country. What they would give for life to go back to "normal." What I would give to spend another 4th of July with Wayland.


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My original endeavor was to share our story of losing a child to a brain tumor and our journey to help find a cure for pediatric brain cancer. That is not changing, but our journey is. Let me take you along. 

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