Here it is, my first blog post. It has been a long time coming, it took me much longer to post than I hoped. But alas, it is here! "Playgrounds and Cemetaries," a pretty strange title, isn't it? But those three words pack in a lot of meaning for me, Playgrounds and Cemetaries... What are your thoughts when you see it? For me, those words circulate in my head often and I want to tell you why. Since Wayland was diagnosed, I often thought how strange our life was. Our life changed, that was obvious. But there were lots of parts that did not. So, I saw it as a mingling of the ordinary and extraordinary. Back when Wayland was alive I would call it playgrounds and hospitals. There were so many days that were normal; runny noses, running errands, and playing at the park across the street. Then of course we had our hospital days; waiting rooms, medicine, and doctors, it was so extraordinary for a little boy. When Wayland was really sick, I would say the extraordinary combatted the normal until it was almost non-existant. We were facing death head on, nothing about that felt right. It was painful, a heart-wrenching, kick-you-in-the-stomach kind of painful. Now, we have a lot of normal again. It is definitely a new normal, though, because Wayland is gone! I am missing the child I should be caring for and his absence is the biggest void that I could ever imagine. The void never leaves and the pain doesn't subside. No, your body simply adjusts to the void and learns to work around the pain. This adjustment and new normal, I now call playgrounds and cemetaries. From the outside looking in, our days probably look like most people's, cars in a driveway of a typical, middle class, suburban home. You see us out and about at restaurants, at the grocery store, at the playground. But inside, we walk by our dead child's empty room, we hear Amelia say, "I miss Wayland," and we visit a cemetary a few minutes from our home to see a monument erected where our son was buried. A cemetary. That is not normal. There is nothing to describe the "bite" a visit to Wayland's monutment feels like. Our life will always be like this. There will never be a moment, happy or sad, that doesn't mingle with the extraordinary reality that Wayland is gone. That's why I like to describe my life now with the words, playgrounds and cemetaries. I want you to know that this isn't a post to get your pity. No, this is a post to share how I feel and how I think my husband feels. This is to let you know there may always be days that we don't act like ourselves, maybe a little sad, a little distant. There may be days we seem perfectly normal; we laugh, have wonderful conversations with friends and chase Amelia at the park. But, happy or sad, both of these types of days and moments offer hope. The sadness reminds us that we are meant for more, for God. And the moments we experience joy and playfulness, we experience the gifts of this world and we get the breath of fresh air that strengthens us to keeping marching forward.
"I have been through the valley of weeping,
the vally of sorrow and pain;
But the 'God of all comfort' was with me,
At hand to uphold and sustain...
As we travel through life's shadowed valley,
Fresh springs of His love ever rise;
And we learn that our sorrows and losses,
Are blessings just sent in disguise.
So we'll follow wherever He leads us,
Let the path be dreary or bright;
For we've proved that our God can give comfort;
Our God can give songs in the night."
-Taken from the book, "Streams in the Dessert"
Thank you for taking the time to share our experiences and reading through our new website. Please keep coming back to read about any updates we have in our battle against DIPG. We continue to thank you, "Waylands Warriors" for the continued support we recieve!
love from Indy,
Amber, always Wayland's mommy