Ironically, Houdini was also a skeptic. He sought to expose those who were frauds and those who preyed upon people's hopes and wishes with loved ones believed to be in the spiritual world. And with this, Houdini brought many things to light.
In so many ways, my boys are little Houdinis.
I wake up and dart out of bed, scrambling to actually squeeze in a hot shower before the day gets going. It's been a storm of a week, last night being the first in days we are able to sleep at home with a working furnace. And now the very first morning waking in our own beds we are having to run out the door to deal with the stresses of CF clinic.
I pack a bag with some snacks and load the kids in their car seats still in their pajamas and head out the door. Sun pouring into the windshield I route my best course against miserable Chicagoland traffic and so that I can stop for a reliable, hot cup of coffee and a take-out breakfast for the kids to eat during the lengthy clinic.
When we arrive, it is a full-waiting area at the CF clinic. This is highly unusual as the staff is extraordinarily diligent about getting CF kids ushered into their rooms quickly. This is because individuals with CF can host dangerous germs and in theory pass on those germs to others who are vulnerable (like fellow CFers). I am struggling to juggle everything like the bags, the breakfast, and my two little brutes. I don't want them running around the other kids in the waiting room, some of whom have paper masks covering their noses and mouths, some without. As I contemplate how I am going to grab the two paper masks to put on Michael and Dylan, I see our nurse. And SIGH OF RELIEF. She escorts us back to our exam room. My husband's brother, "Uncle T", is stopping in this clinic to help give me a hand. Let's be honest, this is not a one-person job.
After wrapping up the paperwork with the front office staff, we get the boys settled with their food. A bagel slathered in stawberry cream cheese, donut holes, a breakfast sandwich oozing with cheese and salty ham all for the boys and a coffee for me. Cream only.
The battle begins earlier than normal at this clinic visit. The first few minutes are always spent getting the boys' vital signs... height... weight... pulse ox (oxygen levels in the blood)... temperature... blood pressure. Normally a breeze. But not today. Michael and Dylan are having no part of this visit. Everything is a test in patience with them. Dylan is bull-headedly focused on eating and Michael is determined to argue his way out of everything we ask. My own blood pressure is rising. Maybe they need to hook one of those machines up and check me.
Only after a "Child Life" Associate comes with toys and bubbles to visit our room, does the mood change a bit. I toss the strewn pieces of donut holes left behind and the remaining crumbs of Dylan's sandwich in the garbage. I look down and see Michael's bagel with one petite bite taken out. His breakfast is virtually untouched.
Our favorite nurse breezes in and busts out laughing. She always knows that our family brings a lot of, er, energy to our visits. All the staff can usually do with us is throw their hands up and, well, laugh. I share with her how the heat has been out at home, how we've been staying with family, and how it's been a 'run-and-gun' life in recent weeks. Then we start discussing the boys' health. "Let's start with Michael since we are already chatting about him..."
I begin to explain that he has had more severe belly aches in recent weeks and some troubling potty issues. "Yeah, we'll talk about that," she says casually. "Michael has lost weight." She coolly focuses on the computer as she makes the statement. I know she is doing her best not to set off my insane mom alarm.
I am stunned. I have taken a slug to my stomach and the room closes in around me.
The commotion around me fades. So does the chatter and the boys' hysterics about bubbles.
I can no longer hear the muffled voices in the hallway.
The world stops. And for once in my life, I am speechless.
MICHAEL LOST WEIGHT?
No, no, no.
Not my boys.
Not possible.
I don't know if you realize, they are different. THEY ARE DIFFERENT. These two little boys are different. We're the exception. They are different! These boys defy the odds. I want to scream.
We are the weird CF family to the rest of the world. And we are the weird family within the CF world because our kids don't have problems with weight. They are different in every way. These boys defy the odds. Don't you know? Not possible.
They. Just. Don't. LOSE. Weight.
I shift uncomfortably where I am sitting and take a long, almost painful swig of my coffee. I let my inner hysteria happen. But I work to stay composed on the outside. I straighten my posture tensing all my muscles awaiting the impact of the coming conversation.
"He grew over an inch and lost over a pound," she explains. I do the math in my head. His weight went from an astounding 87% BMI last time to 42% BMI today. It's been only two months since our last visit. We discuss how something is up with Michael and we dissect what is going on. We cover all aspects of his medications, his belly, and his cough. When I wrap up with her, she gives me a look of warmth. She knows I am freaking out. It will be okay, she tells me with no spoken words. All in one look.
I spend some time next with the Nutritionist. She explains how incredibly important the growth in his height is. It is really GOOD that he is growing taller. We begin to address Michael's chronic stomach aches along with the weight loss. It becomes all too real. His belly aches were a bigtime symptom that his meds were off and they will be adjusting the enzyme pills he takes every time he eats. On all accounts everyone believes he is malabsorbing his food.
Basically, imagine eating a meal and afterward your have a miserable stomach ache. Some, not all, but only some of the nutrients and fuel are absorbed. Your body cannot process or digest all the nourishment it's taking in because it doesn't have the right tools. Then you feel a wretched stomach ache. You feel this way after every time you eat. You begin losing weight since your body doesn't get all the good stuff out of the food you are eating. And because you no longer have an appetite because your stomach hurts, you don't eat. Your body begins losing precious calories and you aren't putting enough back in to refuel. That is what has been going on with Michael.
No wonder he has had a stomach ache. No wonder. I am sick. I feel my own stomach take a turn.
We discuss new medications for Michael. New ways to add calories. New foods to make. I am starting to feel this ugly disease creep into my already insane brain. It's almost too much to handle.
As I wrap up with the Nutitionist, someone cracks the door open to give me a message. That's when the escape happens. Out the door like a flash, Dylan is gone. He has disappeared into the hallways of the Children's Hospital Building. I dart out of the room chasing after him. He passes all the exam rooms and is all out laughing at me. Dylan has no mask on, because clearly there is no time for a mask during a great escape and, oh by the way, it's way too appropriate for a CF clinic and waiting room. He loves the chase. I am not anywhere close to grabbing him when he jukes to the right, then a hard left, and heads out into the bustling waiting area again. His little legs are a flurry, he turns left and starts to head to toward the front of the building where we entered.
I am in good shape, but this kid is FAST. I actually have a momentary glimmer of promise to catch him. I thrust my arms forward with all my force and yank him back into my arms. I am able to grab and scoop him up. All the while he is laughing at his stunt and kicking his legs hurriedly in my arms. Oh Lord, Dylan is going to be the death of me.
I am panting as I retrace our path back to our exam room. As we walk past, other parents and clinicians are snickering having witnessed Dylan's sprint performance. I am just glad that he didn't make it outside and get on the tollway, which with his speed, is completely possible.
Just as I near our exam room, a door cracks open from across the hall. One of our good friends whose son also has CF happens to be at clinic this morning. He pops his head out the door of their room and grins. "Hey, you wanna ride down to the gala tonight?" Catching my breath, I respond, "That would be great." The door closes, and I head back into our room with my little Houdini in tow.
The boys' physician with whom we have a great relationship with and I trust both professionally and personally walks into the room. She takes one look at me and says, "You're going to need some good concealer tonight, honey." It's just been that kind of week. It's written across my face. My dark mood and lack of rest is exceedingly obvious, especially without a stitch of make up. Clearly, she is trying to lighten the mood. We both laugh, discuss the gala which she will also be attending, and we agree that cosmetics are the easy solution to an easy problem. We move forward to talking about the more complicated problems around the disease I hate.
Nearly four hours start to finish and after a battery of blood work and chest x-rays , we are finally packed into the car heading home. Both boys immediately are passed out asleep. They are drained. And so am I. But I have to get ready for this gala tonight. The next hours I spend trying to navigate nail painting, CF breathing treatments, feeding the kids, applying make up, cleaning up dog puke, and getting out the door.
As I ride into the beautiful city of Chicago with my friends and I tell them about the snags we have had in recent weeks the response is, "What are you doing in our car? You are a bad luck charm." We all bust out laughing. I really need to have some fun tonight and to take the edge off the upsetting news about Michael's weight and the stress from having no heat this week. Then my phone rings.
"I don't have my tuxedo shirt buttons. They are at home. What should I do?"
Seriously??? This can't be happening. My husband is getting dressed for the gala at his office and has no buttons for his shirt. I am not surprised. It's just the way of my world. He decides to McGyver his shirt together with some engineering of binder clips. One his tie and vest are on they inconspicuously hide the lack of buttons on his shirt. Talk about an illusion. Guess you can call my son Houdini and my husband Copperfield.
The regal event is a fundraiser for Cystic Fibrosis where esteemed chefs from all over come and create tasty delicacies. It is a black tie affair and I am really looking forward to tonight. There is a lengthy cocktail hour with delights to satisfy the utmost foodies in the room, a full dinner and plenty of fundraising efforts with a silent and live auction with the proceeds going to the CF Foundation. Finally, along with awards for the preferred chefs of the evening voted by the gala's attendees, they also present the "Bid for a Cure" where attendees can bid during a live auction to make a donation. Our family as well as the others seated at our table are highlighted in the special video production that is aired before they start the bidding.
The theme of the spectacular evening is "The Emerald City". There's no place like home, there's no place like home. You and me both, Dorothy.
The evening overflows with fun and positivity. However, the reason we are all gathered together does not go unnoticed. My best friend is working the event because she is a charitable soul. A lifelong friend. Someone who is in the trenches with our family. Someone who wants the cure as badly for her sweet Godson as much as we do. And I love her for this. Completely selfless, she is one in a million.
We spend time with the other families who have kids with CF too. We have grown close to a special few of these families over the years. We are each others support. They are the friends who, well, 'get it' when no one else really does. We talk about CF treatments, endless medications, balancing life and disease, and fundraising together. We cry together and we collectively see the light on the horizon together. We stand arm in arm in this battle against CF for our children.
We mingle with such remarkable adults living with CF who inspire me every step of the way. Their valiant fights leave me hopeful and their undying optimism humbles me. I am almost nervous in their presence because I so admire these amazing individuals.
There are the volunteers and employees of the Cystic Fibrosis Foundation who are working tirelessly to raise money that supports a cure. They serve up a lovely evening filled with food, fun, and whimsy. Most importantly, they overachieve on a night of fundraising to find a cure.
The night is filled with hope, love, and good things. I make new connections, rekindle old ones, and smile all along the way. But there are moments in the evening, lulls, where my heart aches. The disease lingers. I can now relate to the 'weight maintenance' conversations around the room. I can also share our "hospital story", since most everyone has one.
I most want to pull back that curtain and understand all of why this terrible disease destroys so much. It was simply a man behind a curtain operating levers and buttons in Oz, I want to understand how a minuscule malfunctioning protein can produce such grandiose effects with CF. I want to pull back that curtain and see the dark places, the light hope and every single shadow in between. I want nothing more than to know everything I must to care for my sweet angels.
I am so overwhelmed with the day, it's ironic that at such an elitist food event, I can't bring myself to really eat. Seriously, it's not the Spanx under my dress holding my belly in either. It's the adrenaline pumping from the early morning hours of clinic visit, to the stresses that weigh on my heart about Michael, to the giddiness of arriving at the gala, to the airing of the video and seeing my sad self on all the giant screens in the banquet hall. It's also the true sorrow in my stomach for the reason we even gather tonight with all of these amazing folks. I just can't eat. It's just too much.
I would pay later for my surging emotions, too much red wine, and no food in my stomach as I politely ask the limo driver to pull our stretch limo over off the tollway so I can get sick properly on the side of the road. Completely classy, I realize this. And still in my designer gown and heels of course.
What's life without adventure? What's life without the unexpected formal-ware purge? What's life without an escape attempt with my Houdini every so often? What's life without a little challenge even if it is a weight gain challenge?
There would be no stunts at which to marvel and no flair to keep our interest.
There would be no darks, no lights, and no shadows.
There would be no mystery, no adventure, no intrigue, no applause, and no thrills.
There would be no wonderment, and most of all,
there would be no journey.
If all shall be revealed, then what's the point?
Apparently, the Wizard in the Emerald City and Harry Houdini were both on to something really grand.
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