Thursday, July 29, 2010

Love, A Retrospective

Call me a sentimental fool. Life has seemed to balance itself out, and dare I say, assume a new sense of normalcy. It's as disorienting as it is fabulous. What a bizarre turn of events that finds me so thoroughly enjoying staying home with my children and assuming the role of a neo-classical housewife! As much as I am finding unexpected satisfaction in this quieter life, it begs the question- does it change who I am? And who exactly is that?

The day Jackson was diagnosed, I looked at my husband's red-rimmed eyes, full of misery, and wondered if this was the end of us. Could we survive this? Would he resent me, would we grow to hate each other, or worse, would we become indifferent strangers?

We've recovered from the suffocating darkness of that moment. We smile, and we laugh, every day- even on the bad days. And to me it calls to mind just how we've been an unlikely success from the very start.

I came to Fort Worth a newly independent single mother, waiting impatiently to be free of my former life. I quickly stumbled into the circle of friends I had been looking for my entire life. Part rogue, part misfit, but all heart, they accepted me in ways I never thought possible, cheering me on and occasionally glossing over my clumsy disgraces. I exploited the town on the nights my 4 year old daughter was with her Dad (And while we looked for an acceptable preschool on this side of town, that became more often than not) and abused the classification of 'single' as a means to torture the male population of Tarrant County. Just as I was learning to juggle motherhood with insanity, I met Mike. Mikey, to those of us who toast with him and watch him rant.
To be honest we had 'met' years before, at a local music showcase a friend of mine ran and I volunteered at. However the meeting was so unremarkable that neither of us has the slightest recollection of it- perhaps due in part to his having been 17 years old and my having freshly given birth to Emily at the time. We were both interested in other people. We were both adamantly anti-commitment. At one point within the same week, we both swore to never talk to the other again, claiming disinterest- incidentally just before he made his 16 hour journey back to Arizona, where he was finishing Luthiery school. In spite of our heroic efforts, the silent standoff lasted only 15 hours into the journey. As he finished school over the next month, we exchanged over four thousand text messages and spent the wee hours of every night on the phone like middle schoolers. By the time February rolled around I was determined not to tell him I loved him when he came home.

Around midnight on February 4, 2007 he rolled up to the house, U-Haul still in tow, and knocked on my door. It took me almost ten minutes to answer the door, because I'd gotten so nervous I drank an entire bottle of wine and went to sleep. Eventually I made my way, shaking, down the stairs and opened the door. I opened it up, and for a brutally long moment, neither of us spoke. Mike came in, and never left.

Yes, it was foolish and impulsive and probably irresponsible, but also impossible to resist. We had to be together, and so were were. All of the time, days on end, somehow never tiring of each other. In the beginning we fought, loudly, and often. At times, we fought more than we got along. Our friend laid bets on who would survive, one cleverly quoting "It's either going to be the best thing that's ever happened to them, or they'll kill each other"

Somehow we didn't kill each other. We began to adapt to each other's temper, navigating the sensitive spots. After a couple of months, Mike said that if things were still 'this good' after a year, he wanted to get married. A couple of months after that, he asked me. I resisted in typical fashion until the night he looked at me and said "You have to marry me, I'm never going to ask anyone else." A couple of months after that...we were married, on the patio of a pub, by a hippie in a tuxedo t-shirt, surrounded by almost all of the people we love. (my family, sadly, couldn't be there)


It was absolute bliss. And as weddings go, it seemed like some sort of punctuation mark in our relationship, but in retrospect, it was only the opening line.

How I love this man. This man who stood by me and made sure I could fight in the custody battle for my daughter. Who has fought off the world with me through unemployment, education, sickness and health, depression and fear, not to mention the size of my ass. The man who promised me everything and has never failed to deliver. If this is the hand we've been dealt, there is no one on this earth- trite as it may sound- who I would rather hold my hand through the scary parts.

Considering the past, I am assured that we can handle the future. When I look back on who we were, I begin to feel again who we are. This odd, sometimes awkward period of redefining ourselves will slowly dissolve into a new gleaming version of our love story, rich with plot twists. And although we don't always get to choose how the story goes, we choose the words we write it with, and that will define who we are.love6

Friday, July 23, 2010

It is absolutely who we are, but it certainly doesn't define us.

I'm struggling with where to start tonight.

Things aren't bad, don't start worrying. Jackson's doing much better than last week. As a matter of fact, he's once again exceeding all expectations of health. We finally adhered to some 'tummy time', and he promptly responded by rolling onto his back, and then back to his belly, and then he was like an unsptoppable weeble, pitching every which way. I began to realize how close we are to having a mobile baby. He's discovered his feet, and spends a good deal of time trying to get his tiny pink bubblegum toes into his mouth. He has learned how to shriek with joy...and irritation. He's fast showing all the signs of having the familial opinionation, to our great entertainment. Except for a few brief, nerve wracking moments now and again, he is astoundingly normal. He is a sweet, salty, butterball of bliss and slobber.

The whole family is doing well, in fact. EM is gearing up to start at her new school, the house is coming together, Mike's finished training and starts ambulance shifts tomorrow morning. We got a puppy. (She's shockingly well behaved) Our relations with my ex husband are even cool and personable. Not that I'm waiting for the other shoe to drop, but it's actually hard to believe how smoothly things are going for the most part. We had a great turnout for the Chili's Gives Back for Cystic Fibrosis event the other night. Photobucket

I have kind of extricated myself from the online CF forums I inittially dove into for a sense of community. There was too much a sense of panic among the parents there. I have, though, begun to meet (if only virtually) other CFer's and parents. It's quite possible I sound like a lunatic to them, but I feel bonded to these near-perfect strangers, and follow their trials and triumphs with my own heart. Through the development of CF related Diabetes (CFRD) and double lung transplants, PICC lines, feeding tubes, I listen, I feel, I pay attention, and I try to prepare myself. I wonder often what Jackson's future will be like. I know of a 13 year old girl who has only had 3 hospitals stays in her whole life, and I know of an 8 year old girl who has already had her FIRST double lung transplant. Where will my son fall? Are we over-celebrating his current robust health? Will he get sick and lose all those glorious rolls of sweet, soft baby fat? Will he need new lungs before he goes to Jr High?
I don't get hyper-focused on these what-if's. They don't run me, they don't run our lives. But I'd be lying if I didn't admit they were there. I often think I've figured out how to feel about all of this. About having a son with this disease...but sometimes it sneaks up on me. I think it's perfectly normal to carry the sadness without being a sad person. More often I have to describe to people that living in our house is not a constant barrage of sadness, fear, and disinfectants. Contrary to popular belief, we have a pretty damn good life, and it's relatively normal day to day. (While Emily is aware that her brother needs a little more intensive attention sometimes, she isn't hungry for attention by any stretch. If it seems that I don't mention her in this blog as much as I do Jackson, I have reasons to be a little more protective of her privacy)IMG_6924

I get sad, but I am not a sad person. I am struggling a bit to find the balance between positivity and honesty with myself. Sometimes it's hard to tell an ugly truth to beautiful people. I hate that my Mom worries about how I am. I hate that if Jackson gets sick everyone who's seen him in the last two weeks fears they gave him something. I hate that he has to live with it and I'm just a spectator to his disease- I hate that he suffers because of something that came from my body. But again, I think all of these feelings are healthy and normal. I'm just winding my way along the learning curve, learning clumsily how to coexist with the dark little recesses where positivity doesn't reach. For now I'll keep looking for the perfect moments, coping with the scary ones, and living all of them.

Let's end on a good note, shall we? A Friday afternoon toast. Cheap champagne and fresh squeezed oranges, because it was quiet, because it rained, and because we could.

Friday, July 16, 2010

Fortunate Son

I can't help it. Today my cup runneth over, and spills on the table, and runs onto the floor... I am flooded with relief and gratitude and love.IMG_6627

To begin with, I have a confession of sorts. Before Jackson was born I had never cried happy tears. I didn't get why or how people did that. Emotions were pretty clear cut, and crying didn't seem to indicate any pleasurable ones. When Emily was born and they lifted her, wide eyed and rosy onto my belly, I laughed out loud. Joy and laughter went together. When we got Jackson's diagnosis, I cried. Low, black tears that seemed like they would never go away. Tears that said nothing but sadness. In the few months since, I have had an increasingly difficult time untangling the different emotions.


Yesterday I was scared. Jackson had developed a cough and started a new course of antibiotics on Monday. Yesterday his cough returned. Not a terrible, wracking cough, but a loose, wet, persistent cough- one that shouldn't be there after 3 days of antibiotics. I knew it was time to call the clinic, and yet I waited. "If he's still coughing in an hour, I'll call." I wanted to stall, deny the possibility he could have an infection or a new bacteria. We have been riding the impossible high of his health for a long time now, and the idea of him getting sick and all of that ending- the thought of having to face our fears with his disease....I wasn't ready for it. I found myself at odds with the world around me, and still unable to admit I was just worried. Eventually I made the call, not knowing if my fears were an overreaction, but not willing to risk the chance they may not be. Our nurse, Stacy reassured me that I made the right call, called in a short course of steroids, and booked us to be seen the next morning. My heart felt like a lead weight in my chest, heavy with 'what-if's.


Jackson slept fitfully, increasing my concern. We rose early in the morning and as Mike suited up for his shift, I made a bottle, prepared meds, gave breathing treatments, bathed Jackson and myself, and managed to get out and arrive early to a days worth of Dr. appointments. (4 month checkup was today too) Jackson got a fresh throat culture, which we will have the results of early next week- to ensure he's getting the right antibiotic. My instincts tell me we may be looking at a new bacteria, but we'll see. For the time being we're continuing the 4x daily breathing treatments and finishing the steroid burst, and he started a probiotoc to help with the caustic effects of some of his other meds on his poor little bottom. IN general, he was given a n impressive bill of health by both his Specialist and his Pediatrician. His weight is approaching the seventieth percentile, when 8 weeks ago he was barely skidding along above the tenth! His height is in the ninetieth percentile, and we were awarded copies of his growth charts as trophies of our success. In the end, the news was not only not terrifying, it was joyful and good and relieving.


This is where the whole hybrid emotion thing comes in. I have tears for all the good news we heard today. My unrestrained glee over these little (huge) triumphs is borne directly of my fear and sadness. I'm finding that this is the biggest impact Cystic Fibrosis has had on me. I have only just touched the fringe of my fear, but I know what it is. It's constant presence gives me strength to live in moments, rather than in days. It's the most absurd gift, this new ability to see the unadulterated bliss and perfection in a perfect second- the time between one blink and another when everything is good. The glint of the sun in the corner of an ambiguously blue eye, renegade baby-scented droplets of water gleaming seconds before they hit my face at bath time...a single, soft and deep sigh as he finally relents to sleep. Maybe that's why my desire to pursue photography is becoming impossible to quench. I want to see and show the world all those perfect moments.

And it has leaked into all aspects of my life. While I am by no means perfect, I have learned to let go of things that don't really matter. I'm not angry. My tangled mess of impure emotions- all of the bliss and the fear, all of the energy and exhaustion...has made me better. I'm better than I was. I am the cup that keeps running over.


(PS I don't really have any thematic photos for this passage, so I just picked out some of my favorite "perfect moments")

Wednesday, July 14, 2010

Over the River and Through the Woods

We were lucky enough a couple of weeks ago, to have a few blank spots in a row on the calendar. We took the time to pack up and haul our butts to the Cornhusker state so Jackson could meet his Grandparents. A short trip to Austin last month proved to us that we could travel, but that traveling light was no longer an option. I dug out our biggest suitcase and loaded it up with nebulizers, sanitizers, tubing, masks, alcohol wipes, enzymes, spoons, applesauce, clean/dirty baggies for each item to be used in transit, breast pumps, bottles, extra albuterol, a cooler for pulmozyme and milk, and lord knows what else I've forgotten to list. When all was said and done Jackson's gear took up the giant suitcase, his diaper bag, the breast pump bag, and another carry-on of toys and miscellany, and all 3 of our clothes and toiletries snugged neatly into a suitcase half the size.

He took the long hours in the car shockingly well, sleeping much less than I anticipated, and enjoying the scenery just as much as the toys dangling from his car seat handle. His propensity towards sweatiness and love for uber-warm blankets led to diaper-only travel, ultimately dubbing a great part of the trip "Naked in Kansas"


The reception at my folks house was pretty epic. If you can imagine having not met your baby's baby after four months...well, they were that excited. Mike had asked me if we wanted to pack the swing for the trip and I had simply said "Not necessary. He won't be put down long enough." Lo and behold, I was right.

Over the next several days, we were ALL spoiled rotten. Visitors came to us- and although I wanted to see more people, ultimately we were able to limit his exposure, which is good. A trip like that is both exciting and worrisome. But there was still a great turn out of family, and I know more would have come if they could. We were regaled with home-grown, home-canned salsa (that I could've just drunk from the jar, it was so good) Stuffed strawberries, homemade raspberry cheesecake, Dad's breakfast tacos, Mom's chicken spaghetti... I can't plan to eat properly there, but damn, do we eat WELL!! My folks also made sure we got to take NAPS, a directive to which my response was to collapse and remain unconscious for four hours. I'm telling you, that nap turned my whole world around and things have been on the up-and-up ever since. Jackson suddenly decided to double his appetite and sleep through the night, and what's more, he brought that habit back home with him! Everyone got to see firsthand how his treatment regimen works, which tends to go far in the understanding of his disease. Our excitement doubled each time we heard "I didn't expect him to look so...HEALTHY!", and we heard that a LOT!


It was the best trip back to see my folks I've ever had. As always, we felt sad, and a little guilty leaving. It's hard knowing it will be months and months before my parents can see the kids again. Mom at least held her tears 'til we were out of view, and we had left little more than the scent of baby on their clothes. Now it's back to blogs and texts and emails and pictures, which make me ever so grateful for technology, but until technology can replicate the warmth and the smell of the top of a baby's head, it's just not quite the same.



Thursday, July 8, 2010

Things I Love, Vol. I

Alright...I have begun the monumental task of sifting through the hundreds of pictures I've taken in the last month in search of the (maybe) dozen or so worth sharing. I've also wandered from my usual photo space standby at Flickr- which I still love- back to Photobucket, where I can showcase multiple photos on one panel should I so choose. I like that. This is the first of many volumes in my love affair with minutiae.

What I love about life, RIGHT NOW.

I love the farmers market that is within walking distance from our new house. I love the ripe, tumescent berries, bursting with dark tart juice that stains your lips and fingers. I love the instant popsicle machine that turns them into complete and utter summer satisfaction, and that the taste belies their healthy nature. I love choosing what kind of fruit we are going to try next. I love planning half of our day around popsicles!

I love the way my family looks at each other. I love that I had to pick from at least twenty pictures of various groupings of us all cuddled up to find the two just right to put together, and I love that none of them were posed for the camera.

I love my accidental self portraits, always with the camera glued to my face- and that my family hasn't yet told me to put the damn thing down.

I love the smile lines around my husband's eyes. I love that they tell me that in spite of his fevered opinions and wild rants, he smiles- a lot. And I love his hands, a little rough from the work they do, and bound by one very important piece of silver.

I love that I think Jackson is going to have his fathers eyes. They may be shaped more like mine, but I am beginning to see the tiny little flecks of gold around the pupils just like Mike's. Most people just think his eyes are fantastically blue, but the little gleam in the middle that falters somewhere between olive and sun gold is my favorite thing about them.

What I don't love? My inexperience with layout. It's going to take a lot of trial and error to get my pictures the right size and in the right place. As of now.....I don't know how to do it...

Wednesday, July 7, 2010

Triumphant Returns

Finally, I am home, with internet, and stealing the moments it takes to update the blog...sort of. There have been so many things going on (moving, summer vacation, 1400 miles on the road, birthday parties, anniversaries, fundraisers of all kinds...), each one so involved that they at least deserve a blurb of their own...I haven't been able to keep up. And to be perfectly honest I don't think I can dive into the retrospective because we are still full throttle into each passing second. My head has become accustomed to the spin that accompanies the pace of our lives. And to think, there are people who would consider my title of "stay at home mom" to be mundane!

The most fortunate turn of events- at least as far as the blogosphere goes- is the timely procurement of a DSLR camera. I find myself beyond inspiration with the muse of ordinary life, with an endlessly clicking shutter and the hope that I am learning a thing or two along the way. What I have missed in updates, I hope to share a little of in photos. I have discovered inspiration in Kelle Hampton's blog. Her photos are amazing and her positive message came along just as I was searching for the same vernacular. If you read her blog, start with "The Birth of Nella Cordelia"- a deeply touching story of her own unexpected twist of fate- and grab some tissues. Thank you, KK, for sending me the link to her blog! I'm hoping my own blog begins to find it's voice in such a beautiful way.

As for the overall state of things... I feel like I need to take a huge breath before I summarize- this life is a run-on sentence. The month of June found us semi-unexpectedly moving into a house, a blessedly massive undertaking. Emily and Mike both celebrated birthdays, we acknowledged our second anniversary amid the fray, polished off our fundraising efforts with the Great Strides walk, visited my parents and introduced their newest grandson, became bona-fide owners of our very own appliances ( I think that officially makes us grown-ups), and tried, against all odds, to document all of it.

Jackson is doing so well that the general consensus upon greeting him is "I didn't expect him to look so healthy!" He tips the scales at over 15lbs now, making the exhaustive cycle of pumping and feeding seem infinitely less burdensome. My boy is downright HEALTHY! He recently decided to double his daily milk intake and at just shy of 4 months is easily fitting some of his 6-9 month clothing. Oh- and I almost hesitate to say it lest I jump the gun, but he has also FINALLY begun to sleep through the night! At least more than the paltry 3 hours he was giving us before. Seems like a small victory, huh? Well, we here at the Wynn house specialize in celebrating small victories and sailing past setbacks.

I leave you with the few photos I've gone through so far and the promise of my renewed dedication.

Oh so little much more to come!