Thursday, March 15, 2012

Keyboard Therapy

Once again I have been neglecting my poor blog. And once again, big changes are afoot.


I'll begin with the blessing in disguise that we're working on. A week ago, Mike lost his job. It's an unnerving and uncomfortable place to be, but with all of our might, we are holding to it being a hard shove in a direction we already wanted to go. Even though we are in a better place than we've ever been to face a challenge like this, it's hard to wake up and feel each day like it's going to be okay, and is indeed a blessing in disguise. We're not spending the time idly, in fact productivity is at an all time high, but to say we're out of our comfort zone would be a grievous understatement. It's deductible season, so the medical bills are rolling in like high tide ocean waves, and the word COBRA comes with an intimidation factor all its own. I've put in applications for CHIP and Children with Special Health Care Needs programs to try to soften the blow and first and foremost, make sure Jackson is never without the life saving medications he goes through every day. We know we will not have to let him go without, but after such tremendous effort to get to a place where we could ALMOST handle all of our own business, it's salt in the wound to be virtually back where we started. My husband gave until it hurt- to the tune of 100 hour work weeks- to make sure that his family was provided for, and the proverbial rug was unceremoniously yanked out from under him. Thank you, GG, for your years of prudence that have been the pillow on which our asses landed when this happened. Let's just hope we can get this behind us without having to exhaust that resource.


But on to happier stories, we have also had much to celebrate.

On Sunday, Jackson turned two. And once again, every cliche about time and how it seems to accelerate as we age seems poignant and deep. We didn't have a big party, since Emily is out of town on Spring Break with her dad, and we really don't feel like it would be right to celebrate without her. But it was a beautiful day nonetheless. I made him bacon for breakfast in the shape of a two, about half of it when in him, and the rest was used as his special deep conditioning hair treatment. (I don't use bacon as a hair treatment, but Jackson seems to think it is the essence of youth and vitality and loves to rub it into his hair). Cake, balloons, and gifts rolled in, I cooked him his favorite dinner - Braised beef and sausage ravioli with meat sauce. He didn't disappoint, and ate an impressive amount. His excitement at having a cake presented with song was so entertaining it made it difficult to warble out my off-key version of "Happy Birthday to You", but in the end, he decided cake is a poor substitute for ravioli. I was a little disappointed to put him to bed that night, but he cuddled sweetly and slept quite soundly- the celebration for him, after all, was neither small nor subdued. I wanted to write a beautiful, prose-y reflection on how the joys of having him for my son outweigh the fear and heartache of his having CF. But alas, I fell asleep myself before sitting down and hammering out the words.

My son. My beautiful progeny, my Achilles offspring- brimming always with joy and fire and endless, boundless curiosity. The child who would have us well acquainted with the ER staff perhaps even if not for Cystic Fibrosis. He's spending the days right now with his foot wrapped in gauze bandages, trying to heal the wound borne of fearless exploration (of an antique marching band instrument that sadly found home for a sharp edge in his soft flesh). Unafraid to climb, to open, to fall, to jump, to peek, to run, and to deconstruct in hopes of learning how anything works. Who often tires me because his nimble fingers, agile feet, and bottomless curiosity are inexhaustible. Who has learned that the world doesn't stop when he is tired, and thus fights sleep like it will steal his soul...unless you play Mumford & Sons. Then it's endless cuddles and talking himself to sleep behind the plastic mask that bubbles up pulmonary preservation and leaves a tiny moustache of condensation on his upper lip. Only at bedtime is he now a baby, softly nestled under my arm, tucked tightly into whatever blanket is light enough to keep him from soaking us both in his salty sweat. Legs dangling over the arm of the big blue chair, feet tapping in secret rhythm until he begins to dream. Only in sleep is he now my baby. My pride in being his mother wins out over the melancholy at how quickly the baby time is over. Having real conversations with him and hearing his opinion on everything he sees is a coveted prize, not consolation for how quickly first words and first steps fall behind us. Watching my children grow and become 'people' is its own reward, and makes the fear, doubt, and confusion on just how one is supposed to raise a child seem so trivial in comparison. I realize at the passing of 'Two', how quickly each birthday will come and go, and how each passing year he will need less and less of me in order to find his way in the world. And I don't say that with sadness, because we begin our children's lives in hopes of making them able to live them fully and well without us. From day one, we are training them to be without us. And so it goes my son, my beautiful progeny. Just know that as it is now, I will always be there should you fall.

Tuesday, March 6, 2012

The Top of Our Lungs

PainterI'm thinking of this for the name of our fundraiser this year. We've decided that instead of dozens of little ideas to bring in a few bucks here and there, we're going to do our Great Strides fundraising party style and throw a big benefit with music and an art auction and some great raffle prizes.

Our Great Strides walk is on May 20 this year, and directly after, we will head over to see our wonderful friends at the Magnolia Motor Lounge, who have generously agreed to host our shindig. The party will kick off at noon. There will be lots of fun local bands (TBA, stay tuned!), an art auction from local and national artists, and some great raffle prizes. I'm kicking around the idea of a washers or horseshoe tourney, too. We'll see how it comes together.

I'm so excited! And- really, really nervous. This is a big undertaking, and one I don't have any experience with. Basically, it's going to entail me stepping out of my comfort zone and asking all the people I know, and a lot of people I don't- to donate their time, goods, and services to our cause. In the name of funding the fight against CF, I can do that. I am a little scared that I can't pull it off, that people will tell me no, or that no one will show up. But at the same time, I'm the kind of person who sees a big opportunity for growth and for service and wants to jump out of my comfort zone to achieve it.

But then there's always the reminder of WHY we (the collective fundraisers of the world) choose the uncomfortable role of being the ones with our hands out. Asking people to give of themselves is HARD. And I never feel that my gratitude is enough to show them how much it means when they come through. The feelings that accompany this 'job' are heady. Remember why we're here...the hole in his belly...the scars on her lungs...the transplant waiting list...the lost children, husbands, & friends.

My friend Rebecca over at the UltraViolet Rock & Art Show (and the main inspiration for our benefit format!) made this video recently that I've been wanting to share, because it reflects so much raw emotion that lies just below the surface for me, too. The link will take you to the post called "Just a Mom". I was going to just post the video here, but the blog post itself needs to be read along with it. Sometimes we take on the role of the public voice of our cause, and we get used to sharing the personal things. We get used to telling the details of our child's disease, the pain, the procedures, the daily rigors of a CF treatment regimen. It becomes 'normal' for us. But every now and then something touches nerves we thought we had somewhat protected, and the heady emotion that is mostly kept in check boils over. Right now that something is the testing of drugs that can correct the underlying defect of Cystic Fibrosis. They're right there...just beyond our fingertips. So close we can taste it, and yet not quite ready- while our kids and friends and lovers are going to the hospital, being put on the list for a lung transplant, and dying, while we wait. And that part is still very hard to share. We are still the parents of children fighting a fatal disease. That's why we do whatever we can to bring in the money so desperately needed to find and make the drugs so that people with CF can LIVE with their disease rather than die from it. That's what makes it worth it to put my ass out there and ask people to help.

With any luck, I'll be able to make it fun enough that people want to participate.