I am not one to talk smack of epic sci-fi bad*sses, but in this case, only Darth Vader himself could've caused the drama that landed at my front door. My brother decides to send The evil Lord Vader's mask to our home to Michael for his 5th birthday. As time ticks away on the big day, I notice that the package has not yet arrived. I called my brother to check in on its whereabouts. We chalk it up to a late delivery and my brother suspects that the mask won't arrive until the next day. I explain to him that the UPS guy often comes very late in the evenings, so it is totally possible that it could arrive tonight. I look at the clock. It's 7:30. Almost bedtime. Maybe it won't make it after all.
Sure enough, the boys are hooked up to their evening treatments at 8 pm when the doorbell rings. I am greeted by a very large, boring brown cardboard box sitting on our front stoop. I shuffle it in discretely past the boys and bring it into our dining room to dismantle the massive box. I unload the magnificent Darth Vader mask. The shiny black helmet radiates an aura that I can't do justice. I swear I can hear the eery rhythmic breathing coming from the menacing helmet. It looks awfully big. Huh. I shrug.
Then I unload a second mask... Iron Man. The gold and maroon mask looks smaller in size, lights up and has sound effects. Aww, Uncle thought of baby brother Dylan on Michael's birthday. He didn't want Dylan to be left out.
I know Michael is going to be thrilled with the Darth Vader mask. The child is enchanted with all things Star Wars. I wait until their treatment machines have whirred to a halt and their show has ended. Then I parade in the masks demanding both boys keep their eyes closed.
Daddy and I unveil the super coolest, most bad*ss gift a five-year-old could receive. Michael opens his eyes. He blinks and then his eyes become wide as his little mind tries to grasp what is in front of him.
LORD VADER.
He smiles and then realizes that he has received a special gift from his Uncle. Dylan gets excited that he hasn't been left out. Daddy opens the boxes and we present the Vader mask to Michael. He looks hesitant at first, but then puts it on his head. My husband and I can barely breathe we are laughing so hard. A teeny body with a gigantic helmet. A life-size Darth Vader bobble head in my family room. I am waiting for the helmet to start wobbling as if it's on a coil. All we need is a wood platform for him to stand on engraved with "Darth Vader" to make it complete.
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Swiftly, Michael removes it with a firm grimace. While he remains steadfast in his respect for Lord Vader, a slight intimidation (or perhaps fear) overtakes his emotions after removing the helmet. At this point, he finds little humor (or joy for that matter) in the mask. Michael shifts his eyes to Dylan where he sees Iron Man in a full heroic pursuit while screaming and fighting imaginary bad guys.
Disaster now ensues. With no disrespect to Vader, he would prefer a mask that talks and flashes lights, like baby brother's Iron Man mask. His crying quickly moves into full-blown wailing and his face flushes red. We try all tactics. We each try the mask on and diligently try to convince Michael that it's a really awesome gift and that he would have a ton of fun playing with it. I place it on my head. Gosh, it's even big on me.
I hand the helmet to Daddy who puts it on his head. We realize that the mammoth mask was sent mistakenly and must be an adult version. It's big on my husband. My brother had in fact ordered one for a five-year-old and we received a life-size version.
Michael quakes. "It scares me! I want an Iron Man mask wike Dywan!!!!!" Actually, I can't blame the kid... it sort of scares me too. My husband and I lock eyes and do everything we can not to laugh. We are thinking the same thing... No good deed goes unpunished. Michael's wailing and Dylan's yelling only catalyze each other as they now fight over the single Iron Man mask. We are fighting our laughter in this seemingly traumatic birthday event for Michael. Sometimes laughter is the only course of action. However, the magnitude and the duration and VOLUME of the sobbing throws us into Parenting Reactive Course 101: We need a "barreling-out-of-an-airplane-and-my-ripcord-isn't-working" plan. STAT.
We frantically search online for the nearest toy store and my husband hurriedly heads in an attempt to exchange the Darth Vader mask for another Iron Man mask. The store is about to close in 30 minutes.
* * *
On one particular day recently, I become unhinged. A very different Dark Side creeps in and I cry a lot. Far more than my typical vanilla day.
It's pure and simple. I hate this Cystic Fibrosis. I hate it. I hate it. There are very few days I let myself hate CF and let the Dark Side creep in, but on this particular occasion, the black becomes an emotional suck from my brain.
I rattle through my mental bullet point list of all the dark it brings. I don't mean to get all Debbie Downer, but sometimes it just comes with the territory.
START RANT.
I hate washing and sterilizing the nebulizers every day... I hate calling medical supply companies to exchange the compressors or the nebulizers when they break (which it seems they often do)... I hate arguing with insurance companies... I hate being handcuffed to CF which impedes spontaneity to just run out the door somewhere without thinking about the rest of our day... I hate the ultimatums and the demands for the boys to take their pills with every meal or finding a stray pill that has fallen on the floor because my three-year-old is too busy to sit still... I hate the mental log of how long it's been since they started eating, how much they have actually eaten and if they have enough digestive enzymes so they won't get a stomach ache... I hate begging the boys for more bites during a meal, trying to coax them with different things to eat, and the panic that fills me when they don't eat... I hate the bellyaches and coughing... I hate trying to console my boys with no real good answers when the belly aches or coughing arrive... I hate the germ vigilance which is an ORANGE alert on a good day... I hate watching my boys struggle with fatigue during their evening treatments, when all they want is to crawl in their beds and rest. Like watching Dylan's little head bob back and forth fighting sleep through the shaking and rattling of his treatments... I hate that Michael looked at me recently and said, "I hate vest and mask" when I explain it's time to do treatments... and I hate the daily grind of it all.
END RANT.
Most days I power through and have an upbeat attitude. But there are the occasions where it's just very overwhelming or just frustrating. There are the moments where I wish it were easier and we didn't have to take so much time out of our lives focusing on CF.
We head to NYC for our regular clinic visit. A normal clinic could take a couple hours. This particular one takes seven hours from doorstep to doorstep. Minus the drive time to the a appointment, we are talking 5 hours, yes, FIVE HOURS, sitting with medical professionals reviewing the boys' every detail. What the boys are eating, what medications they are taking, what their activities are, how their digestion is doing, how they are growing, if they are coughing... the list goes on.
We start our day off start our day with a GI doctor to discuss Dylan's belly woes. For the past two weeks he had chronically complained, "My tummy hurts." With no diagnosis that Mommy MD can make, I have to go through every detail with the doctor. She is a kind doctor who listens and reciprocates. She dialogues and engages. I like her.
Dylan is completely disagreeable. He refuses to get on the scale for weight or height. Shocking. I tense. There is a loooong haul ahead and this is not a good way to start. We move on to Michael whose meds and stomach have been relatively well balanced lately. Michael is cooperative and gets on the scale... calculations minutes later reveal that he has gained almost two pounds! Yee haw. After Dylan gets over his standoff about getting his weight and height taken, he finally agrees. Both boys have gained weight. I feel my shoulders relax. We decide to adjust Dylan's meds and stay the course for Michael in terms of his dietary meds. I realize as we leave the office with the GI doctor, that the blows could've been much worse. Hey, that wasn't so bad.
I meet with the social worker to discuss Michael's plan for Kindergarten next year. While shorter than the other sessions with other CF team members, I scribble furiously and take everything in that I can. Will the school provide an aide to help him...? right, got it. When will the bus pick him up for school... will he have time to complete his treatments? right got it. Will he have a buddy to walk with him to the nurse's office...? right got it. My pen writes and my brain tries to keep up.
We move on to meeting with the physical therapist (our old clinic called it a "respiratory therapist") to discuss the children's lung health and what we do regularly to keep them -- clear. This means what are we doing to keep the thick, sticky mucus out of their lungs to avoid lung infections. The therapist is nice and super engaging with the boys. Frankly, I am sure they think she is pretty and are excited that she has 'toys'. Bubbles for blowing. Jump ropes and hula hoops to be active. She has great bags of goodies for them that are all tools to help in being active and to support breathing activities for their lung health. So these boys are like putty in her hands. Although, Michael becomes shy when she asks him to show his skills at coughing, huffing (google it) and deep, forceful breathing. She works through to understand his knowledge of effective ways of clearing the junk that forms in his lungs. Since he is five, it is evident that we are, well, still working on it.
We move on to meet with the dietician. This is the homma-jomma meeting. I like our dietician. She listens and is supportive. She is likable and works with me. This is the one where she and I lay it all out on the table together, like two skilled architects laying out the blueprints for a towering skyscraper. We develop a few new ideas for eating and nutritional supplements and move on.
Then time with the pulmonologist. He asks specific questions about the medications each boy is on and their dosing. Then we go through an abbreviated list of what's been going on. There is a lot of head nodding and clicking on his computer. Then he examines the boys and there is small talk in between the eyes... the ears... the nose... listening to their chests and their tummies. He inspects their fingers (because CF can cause clubbing - google it). We start to wrap and pack the bags we have gathered for our clinic journey. And then the doc hits me with the reminder... "Oh, we almost forgot cultures." Oh crap. Both boys hate having their throats swabbed. We do it swiftly and it takes almost all three adults to hold Dylan down... Michael on the other hand complains but is a really good boy. His experience has taught him that although it sucks, it doesn't last for more than a second. I breathe a sigh of relief and we are on our way.
I hate that we have this drill every two or three months. Days like this are exhausting and overwhelming and a clear reminder that much of what we do is not normal. And IT TAKES A LOT OF TIME OUT OF OUR LIVES. I hate much of it, but weirdly, I wouldn't have it any other way. After all, things are pretty good. Just maybe it's that Force underneath it all and maybe I am more of a skilled Jedi than I realized. Thanks, Yoda.
* * *
Dylan is fast asleep in his toddler bed. I notice a massive bump to his right and draw back the covers. I see he has tucked himself into his itty-bitty bed with his prized Iron Man mask at his side.
I chuckle when I see the image and head to collapse into bed. The house is quiet and I am laying in bed watching junk TV... My husband arrives home with a second Iron Man mask and looks weary. His exchange mission was a success, but barely. He explains that he got the last one in the store, which was hidden behind a different mask. And not shockingly, just as the store was closing. He places the mask on Michael's bed so he will find it the next morning when he wakes up.
We wake the next morning to thundering footsteps in the hallway and the mechanical repeating sound of "I am IRON MAN....Take them down Iron Man". Followed by loud, rapid gunfire. But the fund quickly halts and we hear Michael complain that we didn't get him the "right" Iron Man mask because the color of the LCD light inside his mask is slightly different than the one Dylan has. The Dark Side. We press Mike to understand that he should be grateful, not critical.
* * *
Weeks later, I am shuffling through my evening. I pick up random toys around the family room and ones that have made their way onto the kitchen counter and dump them in a bin. My thoughts race to the Dark Side of CF. Often hidden, but lurking. And most times, I am equipped to handle it with my Mommy light-saber. As I chuck a toy into the bin, I realize I have been holding my breath, lost in my thoughts about the boys recent periodic coughs and lack of eating. I make myself exhale. I wonder what adventures await tomorrow.
I pour a glass of wine among my tidying the house and enjoy the quiet minute. My husband is at work and the kiddos are fast asleep. I walk outside to pick up mail as dusk falls on this evening. It smells like summer approaching. I notice something on the stoop out of the corner of my eye. A brown unassuming box.
I drag it in. I strike the tape on the box with scissors and rip it open with a pop! As if to taunt me, there he is - again - staring me in the face. I can't stop laughing at Lord Vader's head in the brown box. My brother had sent another mask to us. In good fun. And to give me a proper laugh. It worked and it is greatly needed.
The Dark Side is always around. But sometimes it takes a Jedi with a sense of humor to triumph over evil. I put Lord Vader in his place. Literally and figuratively. The menacing helmet of one of the most feared villains in cinematic history stares at us daily, sitting atop our television. His lordly presence is a constant reminder that it is, in fact, possible to strike down the bad and find the good. Especially one laugh at a time.
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"When you look at the dark side, careful you must be ... for the dark side looks back."
- Yoda, Dark Rendezvous
Love your posts! Thanks for sharing your lives with us.
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