Tuesday, September 11, 2012

If Absence Makes the Heart Grow Fonder

...You should be IN LOVE with me. I have not blogged since May 10, ten days before our benefit party. I haven't updated with all the great pictures and thank you's and I haven't shared how much we raised to fight CF this year. And on one hand, yes, I feel like an ass. With so many people giving their time and money, I should have been Johnny-on-the-spot with all of that. But alas, I have been afflicted with Good Samaritan Burnout. Untitled

I feel like it's making an excuse, but after the benefit was over, I just had NOTHING left. I stayed home and didn't talk to anyone for the next two weeks, didn't blog, didn't post on J's Facebook, lost the USB port to import the photos, and just kind of seceded from all of my advocacy and fundraising. And you know what? I'm giving myself a pass on that. Because I want to continue the work . I want it to be an ongoing and integral part of my life, and sometimes that means I am going to take a sabbatical and regroup.

I still have pictures to upload, and they are great. But I need to locate my cable or get a new one, so...not tonight.

This year we raised $6,544 for the CFF. $1,700 of that came from the Top of Our Lungs event. The rest came from people who cared enough to give their time and money, host bake sales, talk to others about CF and why they were out schtumping for change for this cause. We raised a lot, we learned a lot, and we're excited to bring it back again bigger and better this spring. I also promise to bring a full blog post with pictures very, very soon.

After the benefit, I stuck my head in the sand and decided the summer was going to be dedicated to just living. And so we did. We even managed to squeeze a vacation at the beach in again, and just as summer had turned us into stressed out, growling, sweat zombies, we were restored by the sound of two munchkins running screaming into the surf, and the taste of shrimp netted just hours before. That, my friends, is my definition of bliss.

Em started fifth grade two weeks ago. (You're so right, I don't look old enough to have a fifth grader! *wink*) She's doing wonderfully and really seems to be coming into her own. Jackson started preschool last week, and oh BOY does he love it. He only goes for three hours a day, which is a wonderful introduction for both him, and his teachers- who I'm afraid were slightly terrified when they read his medical rap sheet. But they've bonded to him quickly, and he to them, and I couldn't be more pleased. I'll also do a full blog on our decision making process and sending him to preschool in the next week or so.

My invisible friends, in writing this I realize how much I've missed you. I'm glad that I'm mentally rested enough to return to purging my thoughts here, and I hope to have some good stuff to share in the coming days, weeks, and beyond. Thanks for having me back.

Thursday, May 10, 2012

Progress, Lip Service, Butterballs, & Benefits

So much going on here in our world, and it's all good! Jackson had a checkup at the CF Clinic this week, an dthe news was almost all good. His lungs sound great, but he's stopped gaining weight again. We started him on a new, higher calorie formula, and Periactin (Cyproheptadine) as an appetite stimulant. They said it would either work or it wouldn't, and we'd know in about 24 hours which way it was going. 3 days later, I'm proud to announce a nearly 2 1/2 pound weight gain, and a toddler who's now constantly asking for food and drink! It's wonderful to see him chow down with gusto. He'll visit again in a month to officially weigh in, and I'm hoping to wow his dietitian with official 'Butterball' status. Mike started his new job this week, at none other than our own Cook Children's Medical Center. It's a wonderful place to be a part of in a whole new way, and I'm so happy to see him not dreading getting out of bed for work each day. Untitled

The majority of my time right now is being spent getting ready for our annual fundraising benefit, which will follow up our Great Strides walk on May 20. We are proudly hosting the Top of Our Lungs event to benefit the Cystic Fibrosis Foundation at the Magnolia Motor Lounge, starting at noon that day! We have collected (and are still amassing) tons of donations from local businesses and artists to be raffled off at the event. Check out the new tab at the top for a full list of prizes to be won! There will also be live music from local favorites Greg Schroeder, Jake Robison, and another guest (TBA), face painting, and an appearance and hosting by one of our favorite radio personalities from 1310 The Ticket Sports Radio! The admission is a $10 donation, and every guest gets a raffle ticket with admission. The best part? You can pick and choose which prizes you want your raffle to go towards.

We've been busting our butts on this one, and I'm REALLY hoping we can rake in a bit for the CFF. FOr those in the CF world, it's all old hat, but this money is desperately needed to find better treatments and keep our loved ones with us. Fundraising is hard, and sometimes- I'll be honest- it can be a beating. When we began two years ago, we did it because we needed something to cling to, something to make us believe we wouldn't lose our child to this disease- something to do to actively fight back. But the nagging thought in my mind was 'when was the last time fundraising cured a disease? Am I making any difference at all? Is this false hope?'

The answer? Hope is a real thing. The drugs in development RIGHT NOW have the potential to change the lives of people living with CF in ways we haven't really imagined. This press statement was released this week, in regards to a the clinical trials of a drug combo that is targeted to treat the underlying defect of Cystic Fibrosis in Jackson's specific mutation of the disease. It's been in development for years, and now it's testing so well that they want to accelerate the trials and move toward FDA approval. One of the drugs, Kalydeco, is already on the market and making a huge difference for a very small segment of the CF population. The approval of this combo would affect a much, much greater number of people, and will help lead to drugs and treatments for other mutations that have yet to benefit from the current drugs. It's not a 'cure' in the traditional sense. But it is the single greatest piece of hope right now for people with CF, and those of us that love them. It's real. It's real, and it's happening, and we actually have the power to push it along. There is no federal funding for this research. There's us. So if you've ever had that nagging feeling that you're just paying lip service to this cause, quell it. Tell it to shut up. We're fighting together, every day, and it is making a difference. Do what you can, and know in your heart, that you helped.

Monday, April 16, 2012

Making the Best of It

We're still plugging along. Jackson has fully recovered from his drug reaction, and it's easy to look at him and convince myself he was never covered in welts and fever and angry purple streaks that scared me half to death. Interviews are rolling in for Mike, and we are hopeful that something will come together by the end of the week. Cross your crossables!

More good news is that our CHIP application was approved in under half the expected time and we know that Jackson will not have to endure another lapse in health coverage. I actually couldn't believe it when the letter came and made Mike read it with me about four times to be sure I was getting it right.

We have done our best not to spend the time in limbo idly. We went to visit my family in Nebraska for Easter- a rare treat, since we're usually lucky to see them once a year. Then we trekked down to Austin to visit Mike's family, and now it's back to domestic chores and organizing our benefit for next month. I'm still equal parts horrified that nobody will show up and that I will drop the ball and be unprepared. Something about experience being the best teacher and all that, right?

The proof that we've learned and grown in the past few years is this: we're still here! We aren't madly depressed or cowering in a corner waiting for the sky to fall. This is another dip in the roller coaster, but it seems we know that the track will always go back up. Maybe I am learning to deal with the ebb and flow of the fates just a hair better. Stranger things have happened.

Sunday, April 1, 2012

Our Friend Murphy

Murphy's Law. Or tempting fate, the Laws of Physics, or whatever you want to call it.

Man did we work hard to get off of Government aid and get our own health insurance. Our singular focus over the past two years has been to get ourselves in shape and be financially independent and responsible. When Mike had insurance, everything was very calm, no IV's or hospitalizations, 6 months without even oral antibiotics. And through the forethought and generosity of his grandmother, we also came to have an emergency savings fund in place. A little golden light shone down and it was like we were almost Responsible Adults.

When Mike lost his job I immediately began looking into every option to keep Jackson covered that I could find. Our social worker recommended we apply for Medicaid, and so we went down to speak with the financial counselors at the hospital to help us do just that. I had every piece of documentation they might ever need, an already completed application, extra copies of everything...I was well prepared. Imagine my disappointment when I was told that having money in a savings account disqualified Jackson from eligibility for care. If you have more than $2,000 to your name, you're automatically out. Which to me seems absurd, $2,000 would be wiped out in one ER visit. And if that were everything we had to our name, we would then be unemployed, penniless, and without health coverage for our sick kid. My face was hot and red and I couldn't make eye contact with the financial counselor. I really wanted to yell about how stupid it is we should be punished for doing our best to be responsible. That small savings account is what we're living off of. It wouldn't buy two months of COBRA coverage, but it disqualifies us from assistance. I wanted to punch something.

Allergy-1On the other hand, I feel like a complete ass for being such a whiner about it. And it's odd to be in a place where I really do WANT to complain about it. Usually I'm pretty good about just moving on and finding other ways to do whatever needs to be done, but I just wanted to stand there and have a temper tantrum. "But we did everything right! We did everything we were supposed to do when we could and now we need help and you won't give it to us!" Maybe I even wanted to yell, "That's not fair!" But I'm lucky enough that my mom taught me it doesn't matter what's fair, it matters what is. Work with what you've got. So as our (and by our, I mean Jackson's, we'll go without until Mike gets a new job) health care hangs in the balance, our social worker assures me we've got other options to look at, and I am applying for them all at the moment. I attempted to shake off my perceived injustice and move on.

This was Friday. The next morning- yesterday- at breakfast, I lifted Jackson's jammies up to put his antibiotic into his G Button and noticed what appeared to be three bug bites on his knee. In the time it took me to wonder aloud what had caused them, two more appeared. By the time I had washed off the syringe the antibiotic was in, another half dozen had popped up and I was confusedly trying to wrap my head around the lack of bugs present in this phenomenon. Minutes ticked by and both of his legs became covered in hives, steadily creeping along his body.

Now I've always said, we're the people who are in a good position for bad things to happen, and here's a classic case. Remember how I've mentioned that Mike's folks are in medicine? Well, his mom, who lives 2 miles from us, just happens to be a practically world famous allergist. Dr Grandma does fabulous house calls. She confirmed that there were no mysterious invisible bugs, and in accordance with my fears and suspicions, this is most likely a reaction to his antibiotics. We got some Children's Benadryl and headed toward nap time with some trepidation.

Allergy-3Before I go on- why am I so bothered by a possible antibiotic sensitivity? Here's my not perfect, but not totally unreasonable train of thought. Mike is pretty darn allergic to MANY antibiotics. My mom, and I *think* both of my brothers are allergic to penicillin. It's fairly likely Jackson will have some sensitivities. Why does that bother me? Because I feel like it's eliminating possible treatment options for future respiratory infections. I know many CFers develop sensitivities or resistance to antibiotics through the course of repeated exposure, but I was hoping we'd have a few more years of the old tried and true Bactrim doing the trick before it was out of the running. I worry that if he has wide spectrum allergies like Mike than moving to less common antibiotics to treat him now will eliminate many options for him down the road. I know that this isn't exactly the case, but it still sticks in my craw and has apparently made me pretty cranky about the whole thing.

Moving on- When Jackson woke up from his nap, his entire neck and chest was one giant, angry, red weal. His torso was whelping up in spots now, too, as well as tender places like armpits, behind his ears, and behind his knees- and it was starting to itch some, although in general he was pretty happy. We repeated his Benadryl dose and waited a little longer. It just kept getting worse. By bed time his entire torso was one hot, tender whelp. a red line had crept up to his chin. He was turning solid red from the bottom up, like a thermometer about to burst. He had full body shivers from the sensations, and would periodically try to scratch every red spot at once, twisting his arms behind his head in a frenzied attempt to relieve the maddening itch. An oatmeal bath made him scream. Topical relievers made him scream. He would fall asleep for a moment, only to be startled awake by the crawling sensation under his skin and scream some more. I was relieved when Mike's mom checked in on us again and came in with bigger guns blazing. After some steroids, a higher dose of Benadryl (under the care of a Dr, not something to try out on your own!), Zantac- which helps the Benadryl be more effective, and three hours of rocking, consoling, and crying, he FINALLY went to sleep.

Allergy-2Mike & I didn't sleep so much. Between taking turns giving meds and just checking to make sure he wasn't getting worse, we maybe split three hours of sleep between us. But lo and behold, this morning my boy isn't a 28 pound hive. Woo!! I was exceedingly happy to see that about 75% of the hives were gone, and the mass redness from the neck down had returned to a normal color and texture. A closer inspection under his onesie revealed some nasty looking bruising across his back, where the previously swollen skin cells had filled with blood. I'm told the fancy word for this bruising is Ecchymosis. (Not petechiae, like I initially called it) He kind of looks like someone threw him down the stairs. His legs are having a breakout at the moment I type this, but overall it appears his condition is still on the up & up. A long phone call with our nurse is in order at the open of business in the morning, then we'll sort out where to go with all of this.

I feel better this morning than I did last night about all of it, but I'm still nonplussed. I'm used to respiratory illness. I'm used to digestive problems. But this was new, and not expected, AND I felt completely impotent watching him struggle for hours and being completely unable to relieve his discomfort. And on top of that, I was having a mental tantrum of "Of COURSE this happens when our insurance runs out! The whole time we had it he was healthy and everything was calm, of COURSE the shit hits the fan now!!" Well, excuse the voices in my head for their profanity, if you will. And understand that I know very well that this is NOT the shit hitting the fan. In a global CF sense, this is a *blip*. It's just inconvenient, and ill timed. But frankly I don't know anything about Cystic Fibrosis that is well timed or convenient. The past two days are just a reminder that we should appreciate the health and health care we've had, and keep fighting and working for more. What's fair doesn't ever matter, and it's rarely how the game plays out. It's much more important what we do with what we have than what we think we should have had to start with.



***Please excuse my less than stellar cell phone pics. It's obviously time for me to start using a real camera again.

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.

Saturday, February 18, 2012

And so on, and so on...

Here we are again. Jackson had his quarterly clinic last week, and I couldn't have asked for a better visit. The mild winter and his now five month long streak of NO antibiotics has been amazing, but left a little piece of me wondering if somehow we'd be ambushed with something unexpected at our visit. But as the appointment progressed, it became clear that we were in the midst of a celebration day. His lungs sound great, and his height and weight have stabilized and are on a NORMAL growth curve. Until now the lines on the chart have looked like someone gave an etch a sketch to a drunk and asked them to draw the Mona Lisa. But now, we are looking at a steady, gently upward sloping set of lines that are almost parallel. 77th percentile for height, and ....wait for it.....50th percentile for weight! Jackson dropped below that level around August of 2010, and by the time he got his G Tube, he was under the 5th percentile. Even with the tube feedings, it has not been an easy road back. But his health has undeniably improved since then and I can easily say we're at peace with the decision. This was also the first time we made it from one regular check up to the next without a sick visit. I'm not counting the broken G Button trips to the ER, because those were mechanical errors, not illnesses!

So all in all, things here continue to be on the up & up. I remind myself each day that even if something happened and Jackson had to be admitted to the hospital tomorrow, we still made it five solid months with no illness, and that's a triumph regardless of what happens next. I'm finding now that I struggle with being able to really enjoy the relative peace. It's frustrating sometimes, the rare moments come along when there is nothing looming over our heads, and I know that all I want is to enjoy that moment for as long as it lasts, but sometimes I can't. When the unexpected becomes the norm, the habit of expecting the unexpected becomes hard to break. But it's something I'm working on. I read an article recently titled "Don't Carpe Diem",and while I truly get what the author is getting at, I also wholly disagree. Yes, there are a lot of hard moments. There are times I don't want to do it, times I feel pants-on-head crazy. But I embrace those moments, too, because without them- without the hectic, harried, redundant nonsense- there are no 'Kairos' moments. Because that's who I am. I feel EVERYTHING. All the time. But I live in each moment, because the next isn't promised and the last is already gone. But at the same time, after a few years of living in a cycle of love, fear, joy, pain, that CF brings, it's hard not to always feel the fear coming back on when the joy sets in. What I'm hoping is that I can learn to embrace the joy, even when I know fear may be just behind it. So today, I chase my healthy, happy, and very loud kids around, and instead of asking them not to yell in the house, I crank up the music and yell with them. Like a receiving line, I can only shake one hand at a time. And today I shake hands with joy.

Tuesday, January 31, 2012

Heavy and Light

I've been meaning to post about several different things this past week. I normally don't like to put several topics in one post, but for the sake of time and actually sharing the information, that's just what I'm going to do.



Don't Push the Button (or pull it!)

Jackson's favorite time of day is Naked Time. The few minutes after bath that I let him run free and au naturale after his bath, where the patter of little feet are accompanied by his adorable naked butt disappearing around every corner in the house and squeals of delight at the freedom of the air rushing past his skin as he wears himself out at the very end of his day. Last week, Naked Time was punctuated by the horrified shouts of his sister when she found his G Button laying in the middle of the hallway, followed by a drippy little trail of half digested ravioli from dinner. The answer to the question I've been asked a hundred times- "Can he pull it out?', was clear. It's not easy, but apparently yes, he can! She was a trooper once I calmly told her it was OK and we would just put it back in if it was still in good shape. Luckily, it washed off and re-inflated in such a way that we did just that. Em bravely played spotter as I lubed the little stoma and applied gentle pressure until it slid back into place, re-inflated the water balloon anchor, and tested our triumph with a few milliliters of water flushed through it. We called the CF clinic in the morning to make sure they didn't need to check it, and took pleasure in the shock and awe of friends who seemed to think this was some heroic act.

Two nights ago, as I was prepping all of the meds for our bedtime routine, another call to arms was issued by my nine year old as she discovered the wily button hidden underneath the ottoman in our living room. It couldn't have been out long, maybe fifteen minutes, but it was apparent when I tested the balloon that two times was the charm to deforming the inflatable anchor that holds the button inside his belly. I tried to replace it long enough to take him to the ER for a new one so the stoma wouldn't begin to heal, but it was already too late. Emily was crying and afraid to go to the hospital. Luckily we have an awesome set of friends, and my best Dude Bruce was only a phone call away. Within ten minutes he was at the door, ready to hang out with her so she didn't have to go along for what could be several hours of things she's scared of. Again, I sing the praises of Cook Children's Medical Center for what can only be called their Ultimate Awesomeness. Having CF means never sitting in the Emergency waiting room, exposed to the glut of contagion that accompanies emergent care. And when I told them his stoma was already closing up they were so fast getting us back to a room that I had to do registration and check in after the fact. Our entire visit from entry to parking validation lasted a mere twenty seven minutes. I'm pretty sure that's some sort of record for an ER visit. I still may call Guinness. The door hadn't even closed before a team of three nurses pulled in with a new button and all the necessaries for putting it in. They placed a narrow rod through the tube to give it enough stiffness to navigate the narrowing fistula between Jackson's belly and the outside world. Next, I learned why there were three nurses instead of just one. It wasn't pleasant. The button wouldn't go back through the stoma, even with the aid of the rod to bolster its strength. A glance was exchanged and and apology given with "I'm sorry, we're going to have to dilate it." I don't know what exactly that entails, but the prefacing apology made my heart sink. As they prepared to retrieve whatever equipment was needed for this loathsome chore, the head nurse decided he needed to try one more time before resorting to stronger tactics. One nurse held J's legs at the thigh, and the other held his arms above his head at the armpit, so that they could stretch his torso out as much as possible. The head nurse re-lubed the stoma and button and used deep pressure to try to coax the button back in place. Jackson looked up at me while he cried out, tears running down his face and dripping onto the paper covering of the exam table. This part sucked. But ultimately it was successful, and soon I was able to scoop him up and hold him while he cried. Which wasn't fun either, but was an improvement over being held down. The doctor came in and I was delighted to see she was a family friend! Even at our home away from home, a truly familiar face is a genuine comfort. We were dismissed with medical orders that included having J's surgeon order a spare button for us to keep at home (yay!), and to wear a onesie at all times. So long Naked Time, we're sorry to see you go, but not as sorry as we would be to have to force that button back where it didn't want to go again. Jacks was pretty sore that night and couldn't sleep, so ultimately I gave him a light dose of pain medication. He was finally able to doze off once it kicked in, and I had a fairly large glass of wine before the day took its toll on me and I finally fell asleep.


In sharing this story with family and friends, I learned that as well as grossed out and intimidated, people are very curious about the mysterious G Button. With the second annual Tube Feeding Awareness Week coming up, I'll be sure to post more about the inner (and outer) workings of the little silicone miracle that helps my baby grow.


Kalydeco Day

VX770. Ivacaftor. Kalydeco. EVERYONE in the CF community knows these words, as we've all been anxiously, cautiously, and hopefully waiting for this day. Today the FDA approved the use of the first drug to treat the underlying cause of Cystic Fibrosis. It is groundbreaking, life extending, life giving news. I hate to follow a statement like that with a but, BUT- this particular miracle is approved and targeted towards the rare G551D mutation. This is not Jackson's mutation, but we are still overjoyed and celebrating. Something real has happened to show us that hope is a tangible thing. It's not just a dream we cling to because we have no other choice. It's concrete evidence that our day is coming. But when? Who will still be here waiting when it does? What happens between now and then? To say it's hard to wait is like...I don't have an appropriate hyperbole. I just don't. In my short two years living wit the realities of CF, I have learned more than anything that the miracles and the tragedies each serve to highlight the striking contrast of each other. Each life renewed by a successful lung transplant points out the tragedy of each life lost while waiting for one. Each joyfully celebrated birthday is sweet because we remember those who won't see another. Each hug, each kiss,each day with my children and every mundane task in a day is painfully sweet because I can never be unaware of all of the people who never got those days with someone they loved. It's impossible to celebrate this victory without understanding the losses endured to bring it about. I highly recommend paying a visit to A Matter of Life and Breath for a much more succinct (and frankly more qualified) take on this emotional moment from Piper Beatty.

I'm lost for a clever and thoughtful closing tonight. As is so often the case, my heart is at once heavy and light. Love to you for being here to share it.

Friday, January 13, 2012

Baby No More-- The True and Shocking Tale of How My Baby Disappeared and a Little Boy Came to Live in His Place

Easy RiderIt's officially official. Jackson is no longer a baby. An expert at making his independence and resourcefulness known, Jackson has defeated one childproof safeguard after another. He'd make an excellent addition to a security team, showing them where every weakness in their system is, and that's just what he's done for our new house.

Breaking in, climbing out, extricating kitchen utensils, absconding with keys, and locking himself in rooms are among the clever little man's favorite pastimes these days. To be honest, aside from the natural concerns for his safety, I feel nothing but glee from seeing his little mind at work. This resourcefulness and determined nature will serve him well, and I never tire of watching his gears turn until his problem is solved. There is- or I should say was- one thing I held my proverbial breath and hoped wouldn't happen too soon.

I should have known the day before. I sat on the couch catching up with a dear friend, and we both watched as Jackson tried to open the back door to go outside and play with his sister. About a foot above his head, the bar lock that swings down like an arm and locks into place to prevent the door from opening held its ground, refusing him entry into the great beyond called 'the backyard'. I was momentarily surprised when he quickly gave up on his escape and toddled away. My surprise faded immediately when he returned a moment later with the broom, and willfully used the handle to extend his reach and deftly push the bar lock up and out of the way. I should have known then, that no crib could hold him.

The next morning I really, really needed to have the morning pee (sorry, thems the facts) before I got him out of bed. I heard him rouse and chatter as I walked past his room, but asked Emily not to get him out of bed until I could use the bathroom, and stepped in and closed the door. No sooner had I begun than I heard Em say "Did mommy get you out of bed?" and the sound of TWO sets of feet pattered down the hallway. Incredulous, I emerged from the bathroom to see Jackson standing proudly in the hallway next to his big sister. Somehow, stealthily, soundlessly- without a thud or a thump or a snag- he had scaled the vertical bars of his crib and descended to the ground like some hybrid ballerina-ninja-spider monkey. I was impressed, but suddenly worried. His act at the back door filled my head with visions of his silent escape to the yard during the wee hours of the night, while I slept unknowingly through his Andy Dufresne antics. If he wouldn't stay in his crib, and he could unlock the doors, HOW CAN I KEEP HIM SAFE??

We converted his crib to a toddler bed the same day, a blissfully seamless transition, and ultimately turned the lock on his bedroom door around. Yes, it now locks from the outside, and I hate it. But he is always asleep when I put him down, I watch him on the video monitor, and I unlock the door as soon as I wake in the morning, so he never feels scared or trapped in his room. Feeling slightly better about his security, I began to lament the end of the baby era in earnest. Before long I'll be begging for cuddles that he's too busy exploring and learning to give. It was a huge symbolic moment, another neon sign of an indicator that we are at a great turning point in our lives, yet again.

That day Jackson napped late into the afternoon, and therefore wasn't completely ready to be asleep when I laid him down for bedtime. I had no idea how he would handle the 'big kid bed' alone, so I knelt down beside the bed while he adjusted to the lack of a 4th wall between himself and the freedom outside the bed. He kept rolling over, shifting, acting like he was trying to get up. I laid him back down each time, until one swift move from him was too fast for my grip. He flipped over onto his belly, wrapped his soft little arms around my neck, and laid his head on my shoulder. Still laying on his belly in the bed, but holding on to me so sweetly, he patted my back, played with my hair, and cuddled like never before. When I finally laid him back in his bed, I lay my head next to his, and he scooted over until our foreheads kissed, and smiled drowsily at me. he reached out his hand to touch my face, moved for a kiss, and closed his eyes as he drifted easily to sleep. I milked those few moments for everything they were worth. Somehow he knew I needed a little extra love that day. Or maybe he needed some, too. Sometimes the small, almost imperceptible moments when we begin to assert our independence- in ways to grow apart from each other- it is most necessary to remind each other that we are still there. As Mother, I am the touchstone for my children. And I realize a little more every day that My role in their lives will diminish, bit by bit, until they are grown themselves, and out in the world completely without me. I hope that even then, if they sense that lack of the fourth wall holding them in, that they can always return to me to feel safe, if only for a moment, before returning to their infinite explorations of the world.

Sunday, January 1, 2012

3,000 miles, 8 Family Gatherings, 2 Kids a-flying, and a Partridge in a Pear Tree

IMG_0609The whirlwind of our holiday season is OVER. And it was one for the record books! We took the kids to New York, which meant flying- not only with 2 kids, but with all of Jackson's meds and equipment. I was nervous about airport security, about losing something, about the massive exposure, the cold, just about everything. But it was an incredible trip. We did all the touristy things we never do when traveling as a couple, and I have to say I was surprised how incredible it is to see all those things through your babies' eyes. The lights, the sounds, the shows- it's all absolute magic. We saw Mary Poppins on Broadway, The Rockettes, took them walking through SoHo, Chinatown, Times Square, and every other place we could fit in in 4 days. Em got a special carriage ride through Central Park and the richest hot chocolate you've ever seen. We decorated the Christmas tree at Grampa & Nani's, & had spiced cider & cupcakes. Mike & I went out to meet friends two separate nights. I can't even fit all of the awesome that occurred into a blog, because I know I've forgotten something.


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Perhaps the most surprising part of the whole trip was the airport business. I know CFers who fly all the time with no problem, but having never toted our pharmaceutical circus to 35,000 feet, I wondered what to expect. I read up on and printed out all of the guidelines from the airline, the ADA, and the TSA. We took everything in a carry on for several reasons- cargo compartments aren't climate controlled, bags get lost, and we wanted to have on hand anything we might need in flight, including nebulizer treatments. I alerted every security official that we were traveling with medical supplies, and to my surprise, we ended up being ushered through security more easily than any other time I've flown. It was also a fabulous touch that the kids can leave their shoes on, and don't have to go through body scanners, and they didn't split us up, so we didn't have to go through them either. We ended up doing nebs both at our gate, and in the air by the time all was said and done. The people around us were fabulously compassionate when J had a tough time on our return flight and cried for a while.







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And as luck would have it, I encountered one of the most profound moments in line at LaGuardia security. In my mind I call it the story of the Rabbi & the Stranger. A few places ahead of us was a Rabbi, dressed in his robes, and a few places behind us, a gregarious stranger, who was small-talking most of the people in line at some point. As their paths crossed, the stranger asked the Rabbi, "Do they give you a good enough life that you never run out of compassion?" To which the Rabbi answered with a knowing smile, "It is a good life." The stranger seemed unsatisfied with the quixotic response and asked further, "But isn't it possible, doing what you do, to give so much to others that you end up empty yourself?" The Rabbi smiled again and answered, "There is no end to the compassion, all is forgiven." The stranger countered, "To a point." The Rabbi, never letting go of his comfortable smile, says, "Never to a point. Always." And the stranger somehow seemed satisfied with the exchange. I was dumbfounded by the moment. IMG_0829 A purely curious question, an honest exchange of views, an impossibly simple, yet inarguably genuine moment of human connection amidst the crush of holiday travelers that simply struck me. And it has stayed with me ever since. A few moments later, as the line snaked around another partition, the stranger was standing just behind us. He caught Jackson's attention and asked, "Are you our pilot? Are you going to be flying this machine today?" To which J's response was to lift his shirt up high, stick out his belly, and show the stranger his G-button. "Bah-teen!" He was proudly displaying his gear for his new friend, and I wondered for just a moment if I should explain the unusual hardware protruding from within my son. Without hesitation, the stranger said, "Oh that is so neat! Look at what you've got there!" And just like that, the moment had passed, No need to explain. The line moved on quickly and the stranger was gone. A person I will likely never see again, who in the space of ten minutes twice challenged my ideas of the fleeting nature of humans in passing.