Yesterday was one of those hard days. You know the kind. Where your four year old rolls her eyes like a fourteen year old and your nearly two year old is all sweet and roses until she dumps an entire container of rice all over your freshly swept floor.
Little things, I know. But I am convinced that madness is made of little things.
When Riley came home I fled the house and only returned after the babies were tucked away. When I came back I read an article that expanded my horizons, the ones that occasionally become so narrow.
And then I cried for about three hours.
My dear friend, Jillian has a sister with five children. Three of the five have been diagnosed with MLD, a rare inherited neurometabolic disorder affecting the white matter of the brain. It's onset is varied. In this case, May, Tori and Ike were all diagnosed in early to late childhood. At the same time. When you look up the symptoms of MLD on medical websites they are listed as “convulsions, seizures, personality changes, spasticity, progressive dementia, motor disturbances progressing to paralysis, and/or visual impairment leading to blindness.” Which all sounds terrifying. But the experience is so much worse than those words convey. When your child has MLD you must sit and hold their hand as you watch their abilities, personality and so much of what you consider their core slip away. Although there is no cure, there are treatments that can sometimes halt the disease. Emily and Aaron went through hell and high water to get their children those treatments. For Ike it seems to have worked. May and Tori continue their decline.
Emily has written about their experiences with MLD at Campbell MLD. It is inspiring, heartbreaking and honest. It is a mother’s record. It is important. Her latest post was the article that caused the flood of tears last night. It was both something I needed to read and something I wish she never had to write.
I would like to make a quick comment. In sharing this I am not saying that we are not allowed to have bad days. I am not saying that we should always feel guilt about being sidetracked by the trivial. I am not saying I will never have a bad day again because of grumpy children and unswept floors. I will not judge myself harshly for those lapses. I will just try to do better.
This mother has inspired me to do better.
By Emily Campbell
Despite my best efforts to live a healthy lifestyle, to impart to my kids the importance of eating healthy, expanding their minds, and living life to the fullest, they still are suffering from this cruddy disease. I wasn’t able to protect them. All of the efforts I have made to make their lives as healthy and safe as possible didn’t save them from this brain eating monster. Natural childbirth (which promised higher IQs), extended nursing, baby-wearing, co-sleeping, organic home-made baby food, Joy School, living abroad to learn new languages and new ways of thinking, and the myriad other things that I did to protect and nurture their intellect mean squat right now.
One lousy mutation, one enzyme not produced in sufficient quantities is destroying my kids. All of the chemical-free, home-prepared food I’ve fed them through the years in no way balances out the poison that got pumped into their veins during their chemotherapy. It’s so rude. Busulfan, the chemo drug that was pumped into their bodies around the clock for 4 days, might end up causing cancer and a hundred other horrible side effects. How am I supposed to counteract that? Conscientious motherhood, a way of living where I was trying to be so careful, has reached its limits. Sure, we wash our hands more times per day than your average OCD victim, and we eat healthily, but I’m giving up all of the other little things that I thought would protect my kids and give them the life I wanted for them. When I stopped thinking that I was the one in charge of making them all better, it freed me. I would think that if we just did a few more exercises, or had a bit more Omega-3, or tried a new essential oil, I could make them better; when the truth is that there is no cure for this disease, there is no getting better. Now our goal is just to enjoy life. Now that I’ve given up all of that other stuff, I feel like each day that we have with them is a bonus, a gift. We’re blazing a new trail here.
This new trail puts things that used to seem so crucial into their rightful place as “not-very-important.” Before, I was so stuck on the idea of the “body as a temple,” that I would look disparagingly on henna tattoos, strangely colored hair, Twinkies and the like. Now I’m seeing how trivial these decisions are. As evidenced by the multi-hued heads I can see in the back of my car. These things only have the meaning we give them. And in the long term scheme of things, it really is about love and relationships. If my cutie girls want to wear a tank top or shorter-than-knee length shorts, I’m pretty ok with it. It comes down to the fact that I’m sick of giving too much importance to things that just aren’t. Aren’t significant, aren’t relevant, aren’t worth my time. I cringe at how judgmental I’ve been my whole life, but right now, facing the disappearance of my girls right in front of my eyes, what is and what is not important has come into sharp focus. Enjoying as many moments with them as we can is what matters. If they want some sugary cereal, it’s not the end of the world.
I have a pretty good view of the end of the world, and I didn’t see Captain Crunch there.
If you are interested in helping the Campbells with their basically insurmountable medical bills you can do so here.