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.