It is six twelve am and as usual on a Tuesday, I am awake and there is chaos running amok in my head. In the forefront is the song “Say Something.” I have no particular reason to have that song in my head, no particular relevance of it. It is just there, playing quietly as I compose this blog.
Then, underneath the song, I have bits and pieces of so much. I had an odd dream last night that I went in to have my head shaved and the woman did it with a straight edge razor and cut into my ear so she could shave the part behind my ear. I mean she told me to brace myself and cut straight down into the top of my ear about an inch to an inch and a half. So I have flashes of that particular dream and the phantom dream pains that I keep remembering.
Flitting through all of that, like a drunken swarm of bees, are the smaller “I have tos” that comprise my daily life and the less small ones (drunken hornets, perhaps) that comprise the next month and a half. “I have to finish cleaning for thanksgiving, which will be at our house” (sting) “I have to plan with the group that is coordinating the craft night at the school” (sting) “I have to help the boys get through another day and a half before break” (sting) “I have a party to plan for my sister” (sting) “then her wedding, for which we all need clothes” (sting) The drunken hornets are more insistent than the bees and a bit more alarming in terms of the time in which I have to complete the tasks. And surrounding all of this is the fact that an unexpected but much appreciated addition to all this MAY be on the horizon. In kind of an in my face (as it would be the first weekend in Dec) way.
But the first thing I did this morning, after waking Austin up to get ready for school, was log on to Facebook and drink my coffee. I noticed a few posts about feminism and gender stereotypes and I was all over commenting on those. I love posts like those because I get to either agree wholeheartedly with like-minded individuals, or I get to present logic in the face of fallacy. Either way, I enjoy it.
Here’s where I got snagged. I followed a link that led to the page for the MaxLove Project. I had the opportunity to briefly meet Audra Wilford at the 46 Mommas Shave for the Brave event in Boston in July. You may be familiar with her from her appearance on Jimmy Kimmel with her son, Super Max. He creates amazing things out of rainbow looms and Jimmy Kimmel helped them raise $100,000 by auctioning off a suit made from Rainbow Looming. There was a lot of activity surrounding the shave event, so I was not able to sit down and chat with Audra, but she was there and I was there. She is in the running for L’Oreal’s Women of Worth campaign and a grant for the MaxLove Project. Though I was unable to converse with her other than a ‘hi’, I can see the influence of her caring around me. MaxLove donated hats to cover up our bare noggins after we went bald. They gave a twilight turtle to soothe sleep. MaxLove believes in a whole mind-body-sleep-food approach to health and fighting cancer. It is wonderful!
But I got caught up reading the stories. I am looking at pictures of children. Children aged the full gamut to teens and young adults. And some of the children for which the MaxLove Project has named their beautiful hats are still fighting. And some of them gave all they had in their fight. It haunts me, seeing little faces for so many reasons. For some, they won’t age any more than the photograph. For others, they are living after fighting a battle against things in their own bodies. Think of how sick you feel when you have a cold. When you have the flu. And we whine and we moan because we are so miserable. Now, imagine that the medicines that make you better, take that particular illness away, also make you feel worse. The original ailment is gone, but there are tons of other, new and painful symptoms. I am going to assume that you are an adult, simply because I am and that is how I am thinking of this. This walking thing, the thing you’ve been doing for a while? It is changed. It is made more difficult. You have pain in your legs and hips. Your ankles work different so your toe drops as you walk. You swing your leg from the hip instead of at the knee, like you used to. And that is in the easier cases.
In some cases the disease has caused loss of limbs, invasive surgeries, chemicals pouring into you every day. Steroids that change your mood, headaches. Needles in the spine. Needles in your chest where a port has been installed to aid in bloodwork and to get the chemicals straight to your heart to disburse easier. These are all things adults deal with and it is hard for them. Children handle it with courage, determination to not let it slow them down. With grace.
And yet, this monstrous disease still takes them. And I can’t even imagine. I hate that, for other parents, I HAVE to imagine to be able to relate in any sense.
I am not given to crying. I can count on one hand the amount of times I have cried about Spencer’s diagnosis. This is not bragging. I am not even saying that is healthy. I come close sometimes, though. And reading the stories on the MaxLove page has brought me close.
Every day, we live this reality. It is easier for our family, in many ways, than for other families. That does not mean this is easy. EasiER does not mean EASY. Not by any stretch of the imagination.
My post, here, got long winded. I guess there are a few thoughts that I want to finish off with.
First…as you can see, my mind is chaos. Fragmented, probably, in some way.
Second…If you live in a colder climate, you need a hat, right? It’s getting to be winter, after all. Buy your hat, your friends and families’ hats, your neighbors’ hats from the MaxLove project. Each design has a story to tell. Heart wrenching, yes. But real. Help MaxLove fight back.
Third…even if you’re not buying a hat. You can donate to MaxLove or (or better yet, AND) you can donate to my St. Baldrick’s Campaign. I am a touch over the half way mark for the year. Please help me get closer to my goal. Childhood Cancer isn’t going away without help. Help us research for cures. Every dollar helps.