Throughout the year I add the metaphorical pennies to my "thanks jar".
Thanks for the food that is in our refrigerator. Even the stinky leftovers. Tink!
Thanks for a warm, safe home. And that it held power through a hurricane and historic snowstorm this year. Tink!
Thanks for a wonderful, supportive husband. My rock. Tink!
And for the simpler wishes of thanks.
Oh, thank God the boys are sharing! Tink!
It's strangely quiet. Ahh, it's nice. It will change soon, but for now it's good. Tink!
Mmmmmm this
Massive sigh of relief as I grab the back of Dylan's hooded sweatshirt as he runs into the street. I am yank him back and pull him onto the safe sidewalk with me. Oh thank GOD he didn't just get hit by a car. TINK!
I never understood as a kid how my mom's answer could be the same every year when I would ask her what she wanted for Christmas. Same response. "World peace." I would crinkle my face in a dumbfounded stupor and try to figure out the best sweater or scarf I could get her, certainly not understanding what she meant. And as I got older, I would get annoyed and roll my eyes, knowing that I couldn't wrap up "world peace" nicely and neatly with a bow. It was aggravating. Now with each year of wisdom and each passing day of life, I get it. I understand what she was saying, because I am starting the feel the same way. The things that I want, you can't really give. And now whenever someone asks me... what would you like for Christmas? I draw a blank. There are times I am close to saying, "world peace" for lack of a better answer.
This time of year is not about getting, as you believe when you are a child, but about giving. As we approach the recognized day of giving thanks, I absolutely know there is much to be thankful for. But mostly this year I am thankful for
Progress. (Tink!, Tink!, Tink!)
After dropping Michael off at school, I load Dylan back in the car and head to a routine doctor's visit for (shockingly!) myself with Dylan in tow. I typically prefer not to bring him along, but I know that the appointment will be brief. It is my only option these days. He is sound a asleep in his carseat, his little eyes closed and very still. His head slumps to one side and his long eyelashes rest gently. I am relieved that he will get a snooze in before getting into the doctor's office. I arrive at the medical building, find a parking spot, and park the car. The windshield wipers whisk back and forth as the cool November rain drizzles and patters on the car. It is a dreary, gray day. I call my mother to catch up and then fiddle around with my phone for a bit to let Dylan nap. I stare out the windshield and notice the pretty fall leaves have crumpled and decayed all over the parking lot. They litter cars and landscaping all around. The afternoon puts me in a cold mood. The prettiest part of the autumn is now gone.
Once Dylan has napped nearly an hour it is time to head into the doctor's office. I gently stir Dylan and pick him up. His weight is significant and I nearly drop him twice carrying him into the building. But in his sweet, child-like way, he wants me to hold him. And while he is physically pushing the limits of my carrying him, it is awfully hard for a mother to say no to holding her groggy child who just awoke from a nap. I power through.
We arrive at the boring doctor's office that could be anywhere USA. Ugly wallpaper, insane green carpeting and a laminate counter with a sliding window that cuts the office staff off from the rest of the world with one swipe of left-to-right. Once in the waiting area of the office, Dylan's sweetness and agreeable responses turn vile.
Nowwwww, the complaining and tantrum starts. Great. "Bad Mommy," he repeats over and over again, his tone and voice getting louder.
Just as the tantrum escalates, the doctor calls my name and I scoop wiggling Dylan up into my arms. A nice woman waiting helps me hands me my soaking umbrella fell to the floor during Dylan's tantrum. "I have three. I know how it is." She smiles kindly.
We are quickly escorted (probably a smart move for the other waiting patients' sanity) by the doctor to a vanilla exam room with non-descript muted blue conference room chairs, exam table and desk. While Dylan throws his tantrum, the doctor and I discuss a few things. As he eventually calms down and the doctor and I strike a conversation. I mention something about CF and she stops in a dead pause. She flips the chart over and reads her past notes and then tells me that she had forgotten that I had mentioned my boys have Cystic Fibrosis. She is a nice, older woman, tiny in stature, and firm in her listening the two times that I have met her. She has a kindness but isn't much for lengthy chatter.
However, this time the small talk flows more naturally with Dylan in the room. I think that she is stunned that he has CF. She is interested and engaged. I remember the last time I had an appointment with her and CF had come up, she said, "They have made great strides, you know." Funny, "great strides" is symbolic and important phrase in the CF World. It is the name for the the annual walk to raise money for CF by the Cystic Fibrosis Foundation. Her choice of words stayed with me. Maybe luck coincidental, but her words made me believe she followed CF, at least from the periphery.
In my experience, doctors are almost floored to meet a person with CF, since I am guessing it is part of every medical book, but in fact is pretty rare. It is estimated that only one thousand babies are born with CF in the US each year. I am guessing that meeting a real life, healthy person with CF is like seeing a myth in the flesh. CF used to be such a sad prognosis. And I am sure that chapter on recessive genetic disorders where CF is usually discussed obviously stuck with many clinicians. Decades ago they read that mortality was something like 5 to 10 years. For some, it's impossible to remove the decades of CF's reputation with clinicians. They immediately digress to the CF of the 50's. Not the CF of today.
"He looks great," she states with mild astonishment. I smile and tell her that we work really hard at it, but that we are lucky. Michael and Dylan have been healthy along the way.
"I just read something in the New England Journal of Medicine..." she prompts. Obviously, she is very progressive and "in the know" on the latest CF news. Or at the very least, she is keeping up with medicine in general. I know exactly what she is talking about... a drug that we have followed closely since July 13, 2007 (the day Michael was diagnosed) recently made national headlines. An article was indeed written in the same periodical she mentions.
The drug was shown to improve the cellular problem of CF. It essentially appears to fix the broken CF protein in the body that interferes with the delicate balance of salt and water. We are realists and know that the boys need another drug along with this one, which needs a considerable amount more data. And that it needs to be researched in kids. But I don't care.
It is groundbreaking.
It is remarkable.
It is now real.
And it's application for approval in now in the FDA's hands. I acknowledge the news and share with her that we are completely hopeful and we do all we can to help make a difference. We are advocates and raise money every year. Clearly, we believe it is a worthy cause.
Suddenly, I see some nostalgia in her face. I am surprised at my own intuition on this. I am validated when she says next, "Be glad that they were born when they were."
Her comment is rooted in progress.
She smiles tautly, then she looks down heavy-hearted at my chart to avoid my eyes. She continues partly deep in her thoughts, "I'll never forget a boy in my school when I was little." She shakes her head while still looking down. She jolts away from her thought and writes down a note that I need for follow up and my paperwork to settle up with her receptionist.
Dylan is smacking the grape Mike and Ikes that I have bribed him with so he will be cooperative and polite. As the doctor wraps up with us, she hands me my papers, starts to walk by us heading for the door. Dylan is flustered. I can tell he wants to say something but between his previous agitation and chomping on the candy, he can't get his thoughts out. "Do you want something?" I ask him. I can tell he wants to say something to the doctor, so I make it easier for him since he is furiously chewing. "Do you want to give Dr. a high-five?" He nods.
Dylan puts his sticky, little hand out and gently pats the doctor's hand. Her face glows for a moment and says, "Aww, that just made my day."
To see progress is to watch your kids grow up.
To promote progress is to help someone see something in a new way.
To truly advance progress is to make a difference each day.
For us that difference is a cure. I give thanks toward the remarkable progress that has been made and is being made every day to find a cure for my boys.
Each Thanksgiving, I add new things to my metaphorical thankful jar. I believe that all parents do. I don't know at what point the jar fills up or is overflowing... maybe it never can be too full. Let's be honest, we can never be thankful enough.
This year, I drop a couple thanks pennies in for the sparkle in Michael's eye as he proudly holds up his schoolwork where he has neatly written his own name. They hit the glass jar bottom with a rattle and clank. Next, I toss in a penny for my thankful moments of Dylan's oratory reading of "The Very Hungry Caterpillar" to me at bedtime and one more penny his rendition of "Twinkle, Twinkle"...
Of course, my jar wouldn't be complete without a handful of pennies that tumble into the jar and create a symphony of clanking music. These are for my thanks every night for the boys' sweet, deep rhythmic breathing as I kiss them goodnight before going to bed, observing how big they have gotten in the past days, weeks, months, year. Of course, not before noticing what they have brought into bed with them on any particular night.
Progress means a continuum of change and individual moments of breakthrough. This Thanksgiving I can't help but be thankful for all that progress brings.
Those pennies in a jar
that change that sweetly rattles around every day
are the wealth of a lifetime.
that change that sweetly rattles around every day
are the wealth of a lifetime.
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