Tuesday, May 25, 2010

Your love is like...

...a roller coaster baby, baby.... You know the song. I know you know it. I am invoking its campy, upbeat, disco dance-ability for a reason. As a reminder that all of the ups and downs serve as a choice.

I've been fortunate enough to have yet another big emotional week, chock full of ups and downs, and most importantly crammed with reminders that we've been granted an extraordinary life. There's the old adage, "Life is 10% what happens to you and 90% what you do with it." I wish I knew Confucius, or whoever coins these little nuggets of cliched splendor, so I could buy him the proverbial beer. I might like to fiddle with the numbers just a tad and make it 1% what happens to you and 99% what you do with it, or something much more extreme- because we need to remember the only thing we ever really have any control over in life is our own actions. It's always a choice. And whether I like it or not, I am always going to choose to be happy, because of , or in spite of my circumstances. I have so very much-my every need is ultimately met- I am so unreasonably and impossibly fortunate...going the other route is not an option.

The bright and heart warming spot this past week was the Hope for Jackson Benefit. I am entirely sure I can't explain the gravity of the feelings that day. I was nervous, anxious, thrilled...nauseous, you name it. It seems so funny to me now, how when people say something happened that showed them who their true friends were- that it could ever have a negative context. Yes, there were faces absent, most due to prior travel arrangements, but some for less pressing reasons. It seems horribly trivial in comparison to those who did come. Dear friends I haven't seen since high school, friends from out of state, friends I had only met in cyberspace, and a friend I lost years ago under circumstances I could only blame myself for- all came in the door, one by one- arms open and hearts in tow, demonstrating their support. And the friends who made it all happen, donors I've never met, people, businesses- all gave of themselves to this cause because of my son. I wish I knew how to show how grateful I am. I wish I knew what Miss Manners would say. I would give these people the world, and never would I insult their grace by stopping to focus on those who would rather be absent. Certainly, I wouldn't say everyone should find themselves in my shoes once in a lifetime, I would never wish it. But I do wish somehow everyone could know what it's like to have your deepest grief countered by the best of humanity. My words are so inadequate, and yet still I'd like to tell you.
The lows this week, however, did not travel alone. I am still fighting with a bit of sadness at having to bottle feed Jackson in order to put some weight on him. (Breast milk fortified with formula for extra calories) All the logic in the world doesn't seem to cover up the little pangs when instead of laying side by side, nursing sleepily in the silence of the wee hours, I stumble grudgingly to the kitchen and cuss under my breath at the bottle warmer through half-lidded eyes.
Then we received the call that his throat culture had come back, and Jackson has been colonized with Staph Aureus. The prescribed antibiotics will only control the concentration of the bacteria, it would be virtually impossible to eliminate (although I secretly hope to defy the odds). We knew he would culture a bacteria sooner or later. It's part of having CF. For some reason I had bargained in my mind that if we made it past six months without a positive culture that it was a sign of future health. I'm aware how far that is from sound thinking. The call was disappointing, although I managed not to cry on the phone with the nurse, and the antibiotics combined with the Pulmozyme have virtually eradicated his cough .
Lost cough goes in the win column, but I was still reminded that the smiling, cooing, momma-centric, cuddle-holic in my lap is battling genetic demons even as he grins his gummy smile and tangles his tiny fingers in my hair. The final blows to my positive mindset came in the form of a cancelled visit from my parents, who have yet to meet Jackson, and a bounced paycheck from the degenerate, deadbeat rat at the music shop where Mike fixes guitars and violins. The former could not be avoided, the latter will result in felony charges against said verminous jackal if he doesn't rectify the lost wages and overdrafts pretty damn quick.

I have to admit, the events of the prior paragraph have taken a lot out of me. It's taking a lot of energy to stave off the negativity. But I still have the choice. I still wake up and choose to be grateful for the boundless gifts in my life or to focus on the imperfect. People too often set their sights on the impossible, expecting few road hazards and personal glory. My sights are set on the beauty of the minutiae- a moment- a brush of tender baby skin against my cheek, or simply one clear, barely perceptible breath from infantine lips as sleep takes hold.

Sometimes I need to be reminded. Some days I get angry at meritless, heartless businessmen, careless comrades, or the echo in my bank account. I am fallible. I resent plastic bottles and stuff my emotions inside them until they break. I forget how grateful I am.

But I am grateful. And I am happy...even when I'm sad.

Friday, May 21, 2010

Progress and Challenge

Today we had our first visit back at the CF clinic in a month. To say we were nervous, excited, anxious, and jittery just wouldn't sum up our emotions. What a bizarre anticipation we felt, knowing what we learned today would be the benchmark- for how we had done caring for him, for how he had responded, for where we are headed and where we have been.

I was prepared. Have mercy, was I prepared. I have documented every feeding, every medication, every diaper, every breathing treatment, and every supplement for the past month. On days Jackson has had abdominal pain, it's on the green notebook. On days he wheezed, it's in the book. On days he did anything that could be outside the realms of normal baby behavior, you better believe it's in that book. It may sound a little compulsive to the outside observer, but there is a clear and useful purpose to it all, and today I began to see the fruits of my labor. At first I needed to write everything down so I would remember to do it and when to do it. After that it helped me tweak the routine to optimum efficiency so we had more time being a family and less time around the medicine cabinet. It also serves as a record of what works and what doesn't. If Jackson is doing well on a particular treatment, or not so well, we have a record of it. The doctors and dieticians have their records, and I have mine, and between them all we find what works best with documented accuracy. And as we add and alter medications, it will prevent me from becoming overwhelmed, confused or forgetful with the treatments. I'm kind of patting my back in retrospect for maintaining the records even when they began to seem unnecessary.

The weigh in was nerve wracking. The walk from the waiting room to the Vital check area and scale was a cross between coming down the stairs Christmas morning and a root canal. Jackson weighed in at 10lb, 12 oz, and we were able to breathe. Ultimately the weight gain was good, but could be better. As a rule of thumb, you can't put too much weight on a CF kid. They need a diet high in fat and calories, about one and a half to two times what another person that age would need. So I swallowed a bit of hurt as we decided the best thing to do was to add some formula to my breast milk to make it more calorie dense and try to pack just a bit more chub to the cherub cheeks. I know it's the best thing for him- body mass has a direct correlation to improved lung function among other things. It's a much more pleasant option than feeding tubes. Only positive things can come from it, but it's still just a tiny bit hard to take. I certainly wish I was able to fatten him up on breast milk alone. But really, I think it's just a reminder of the illness itself that makes me sad. Of all the things it has the potential to take, it started with the most important thing I do for my baby. MY body's physical ability to nourish and grow my child. I was also absorbing this realization at the same moment it dawned on me I was sitting in the same room, the same spot I had been the day we got the diagnosis. Low point.

We're also starting a new inhaled enzyme treatment to help thin the mucus in Jackson's lungs so that he can clear it by himself. his cough has been consistent and a bit ragged the past couple of weeks, and he can't clear all of the junk out on his own. Were that situation to get worse...well, another breathing treatment every day is a much better option. I've heard great things about Pulmozyme. I'm again indescribably grateful for the health coverage of Medicaid, because a one month course of Pulmozyme would cost us $2000 out of pocket. If you think that's steep there are inhaled antibiotics that run upwards of $4000 per course of treatment. It's certainly got me thinking hard about the current state of health care.

The final tweaking of treatments was upping the enzymes, since Jackson is two pounds heavier than when he started his prior dosage. We switched to ZenPep, which I like because the granules are much bigger and don't tend to go flying off all willy nilly when we try to administer them. The appointment was good overall, pending the results of the throat culture of course, There were no feeding tubes, no hospitalizations, no failure to thrive, no needles...I'd say we have plenty of reasons to be pleased with the outcome. We'll be back in two weeks to check on the changes.

Finally, tomorrow is a huge day for us. Our outstanding circle of friends got together and organized a huge freaking benefit for our Great Strides team, Hope for Jackson. It's a "Gospel Brunch" Sunday morning, hair of the dog, mimosas and bloody marys, music, and a fabulous brunch spread kinda thing. They've gone all over the city and beyond and gathered a ton of stuff for a raffle and a silent auction. I don't think I've ever felt more undeserving of the love shown to me. I am frantically collecting pictures and posters and knick knacks to try to put together scrapbooks of all of the fundraising events so that when Jackson grows up he can see how much he was loved and supported before he even knew.

Raising a CF child -in my brief experience- is a lot like raising any other child, but under a magnifying glass. The worry is tenfold, the awareness of joy borne of the worry is tenfold. Of one thing I am completely certain...I am most definitely not taking a single moment for granted.

Tuesday, May 18, 2010


I can't quite put my finger on it. I don't know if it's everyone else, or if it's me...I can't make up my mind. I still hear from my friends. They still call or text...sometimes. Most of them, anyway. But it always seems uncomfortable, like they're calling because they feel like they should, or 'just seeing how things are going'. There's a lot of acting like things are normal, feeling awkward, not knowing whether I should make mention of any of the changes in our life or pretend like they're the same as they ever were. When I do mention Jackson's CF, or treatments, or anything of the sort, I feel like it's all I ever talk about, when I don't, I feel like I'm denying it. I'm not comfortable either way.

At first it was perfunctory, at the very least, to ask if I was okay, or if there was anything they could do. The sympathetic head tilt was almost requisite. But as time has progressed, it's become clear that the dynamic has changed, and none of us really know how. I don't really know how to talk to people anymore, and I'm fairly certain they don't know what to say to me. I could stand in front of congress and give a speech right now, but I probably couldn't tell my best friend the ups and downs and everything I've been through. I'm hoping it's just another step in the ongoing process.

But then there are the friends who don't call. There's one in particular that's been noticably absent, although to be honest, that began when I got pregnant. I always figured it was because I couldn't go out and drink and be ridiculous for a while. This friend in particular I've butted heads with since the day we met, but always thought it was just how we interacted. I thought surely if there were ever anything really wrong, something legitimate- she'd be there. The one time I did see her it was because someone else had told her to visit. And it wasn't the best moment- in fact, it was one of the roughest nights we had after the diagnosis. I'm sure some of what went down that night was uncomfortable for her to see, and I'm glad she left when she did. But what happened to our die hard, us against the world family love for each other? Is it only valid when I defend you in a barfight? Ugh. I could devote an entire blog to how hurt I am that it was ok to stick it out through petty fights for years and then disappear when something genuinely goes wrong.

Well, I suppose the right thing to do is chalk it up to one lesson learned, and the other an ongoing period of adjustment. I have changed, and am renegotiating pieces of myself. I can't expect it all to be easy. And I can't expect everyone to be along for the ride. So maybe I'll be awkward for a while. Maybe I'll lose a few 'friends' along the way. I should stop and think about all the people who have come into my life because of this and be grateful for them rather than lament the loss of a falsehood.

And it's not like I'm at a loss for awesome. This is our first family portrait. Why yes, we do rock!

Saturday, May 15, 2010

Great Strides and Gratitude

I posted this on my facebook page, but definitely think it merits a re-post here for my non facebookers.

When Jackson was diagnosed with CF I thought my heart couldn't possibly know a deeper emotion than the sadness those words brought. After trying hard to process what it meant for us, I sat down to write a note to my facebook friends and family so that everyone would know what was happening. I wanted to be up front and clear and not have anyone feel like they were out of the loop, and I wanted to do it without having to personally explain it over and over. After writing the note and staring at it for hours, I was unable to come up with a title. I was determined that something positive would come out of so many tears, and hastily typed out "Hope for Jackson". I had NO IDEA the tidal wave of compassion and support that was about to hit. Not only did people rush by the dozens to support us in the Great Strides walks to raise money for the Cystic Fibrosis Foundation- either by donating, participating, or both-but kindness began to spring from places unknown. People brought us dinners. A friend I haven't seen since my high school graduation designed totes and t shirts with custom art she made from a picture of Jackson and I, and is donating all profits to the CFF. Another friend donated proceeds from her personal Scentsy candle business and is donating products to be raffled off at a benefit. Then there's the benefit, a Gospel Brunch benefitting Hope for Jackson, that our friends simply came to us and said they were going to put on. I was already overwhelmed by the outpouring of compassion. Then the emails started. I started a blog about our journey, in hopes of some day reaching other parents in our position, in hopes of educating anyone with the time and desire to read it, and in hopes of having a positive outlet for my grief. Not only did my friends and family read and respond to it, they sent it on to their friends. Soon I began getting calls, facebook messages, and emails from perfect strangers. Most of them knew someone with CF or another painful affliction themselves; others were simply touched by the story. I was suddenly sharing an unlikely camaraderie with other heartsore families. MY personal network grew exponentially and I began to see that some important work had been set in front of me. I couldn't conceive of a heart more full than mine, and yet the compassion kept flowing. A small child in my mother’s preschool class emptied their piggy bank into a Ziploc bag and brought it to school to donate for Jackson. My cousins children, some of whom I've never met, 800 miles away, signed up to walk, went door to door, received donations from their classes...the children brought in hundreds upon hundreds of dollars in donations for medical research and patient programs through the CFF. There are currently four Hope for Jackson teams for Great Strides, under the umbrella of our National Friends and Family team, with over SIXTY members walking and COUNTLESS donors. We are well over halfway to our goal of $7000 for this year's fundraiser. Fundraising has never been more critical, as there are breakthrough drugs on the horizon with the potential to allow Jackson and others like him to lead a perfectly normal life. Those who are unable to give money have given us their time, just as precious a commodity. These days I find myself wet under the eyes from gratitude at least as much as I do from fear or sadness, and that's saying a lot. I understand that there is no vocabulary to express the depth of my gratitude and humility. I wish there was a way to personally thank every person who has given their money, their time, resources, thoughts, prayers, and kind words to us. The best I can do is take what you've given and continue to fight the disease. I hope to honor not only my son, but all who have supported him, and all who suffer with him in the quest for a cure. I hope to help not only to continue fundraising for the CFF, but to meet with our legislators regarding medical research funding. One of my first coherent thoughts after hearing the doctor tell me my son has what is still considered a fatal disease was this: "THIS cannot be all there is to our life. There has to be good." I had no idea the words "Hope for Jackson" would take on a life of their own and manifest Hope the likes of which I coudn't have even imagined. If I have my way, Hope for Jackson will become a charity foundation helping less fortunate patients recieve the treatments they cannot otherwise afford. My friends, you have shown me the good in spades. All I can do is hope to live a life worthy of what you have all done for my son and our family.

The Lincoln, NE Team hope for Jackson. Just ONE of the four teams we currently have walking to cure CF.

Monday, May 10, 2010

Panic! (Attack)

This week I had my first CF mom panic attack. I have never feared a germ or bacteria. I've always kind of held the belief that kids should get dirty and get sick and build a strong immune system naturally. Kind of a "let them eat dirt" philosophy. With Jackson I have to spend a significant amount of time sterilizing things. I bought this contraption called the Germ Guardian to sterilize all of his medical equipment. I can't believe I bought something called the Germ Guardian. And that I squealed like Christmas morning when the package came. I've been working hard at keeping things generally clean. Vacuuming frequently, disinfecting regularly...my mom will be so proud, I even make my bed almost every day now- even though I like to put the comforter on sideways. But I'm also trying hard not to be taken over by the need to control Jackson's environment. I have begun to study Cellular and Molecular Biology and Genetics, in hopes of gaining a better knowledge of the disease and in turn lobbying for medical research funding. The constant imagery and fresh knowledge of all the dastardly little infectious ninjas out there is also a contributing factor to my preoccupation with infection. I'm currently looking for a balance between psycho and sanitary.

Saturday some of our favorite people were gathering and playing on the patio of an uppity burger joint just down the road. Family friendly music events are few and far between and we were excited to go. Even though I had positively exhausted myself with housework that day I showered and got ready and we all headed out for the evening. I didn't realize it was going to be SO crowded. I didn't realize it was going to be elbow to elbow, shared breathing space, standing room only crowded. My lovely friends were happy to see us, Emily made a new friend right off the bat, and we somehow managed to procure chairs for all parties. the band sounded really good that night, too. Mike was visibly irritated at the crowd as a matter of inconvenience. I was worrying about the doctors recommendations to avoid crowded places. Jackson's still too young and hasn't any immunities of his own yet, which poses a problem to even healthy infants. I began to feel a tightening sensation crawling like a spider from my toes, up through my stomach, hand over hand climbing it's way up through my esophagus, choking me, making my ears throb. I fought it down and looked at Emily having a good time, Jackson snoozing peacefully in his wrap on my chest, and my husband, desperately seeking spirits. I didn't want to freak out unnecessarily and ruin every body's good time. I fought it off for a good ten minutes, but every glance around the crowd reinforced my fear. I knew there were germs everywhere. Someone could cough and I wouldn't be able to get away from it. There were hundreds of pairs of unwashed hands just waiting to reach out and sicken my baby with their cooing and good intent. They were too close. I tried to listen to the band. A waitress' butt bumped me from behind as she tried to take another table's order, but they were too close! Everyone was too close and the panic seized my by the throat and came leaping out my eyes. I remember feeling like a fool as my friend asked me if I was okay and I publicly bawled that I had to go and sputtered out explanations of how irresponsible I was to bring him there. I narrowly avoided knocking over my chair in my haste to escape, keeping my head down in an attempt to conceal my cry-face.

On the other side of the patio's protective concrete wall, I could finally breathe again. Nobody was in arms reach of me. I knew the world was still full of ninjas, and germs are inescapable, but I was once again doing what I could to avoid their wrath. Emily was upset, she had been looking forward to the outing all week- but as is her style, she cried for about a minute, then showed me her utmost support and found herself rewarded with a Slurpee. Mike showed his solidarity by voicing his distaste for crowds in general and was in turn rewarded with a case of Budweiser. I myself learned a valuable lesson. This was completely avoidable. I should have listened to my instincts, apologized that we couldn't stay, and left. I was too concerned with disappointing everyone else, who it turns out would have had my back to begin with. Listen to your gut folks. If it feels wrong, don't do it!

Sunday, May 9, 2010

Happily Generic Family Update

I've started and scrapped about 4 blogs in the past couple of days. Usually I know exactly what I'm going to say before I even approach the keyboard, and while I have lots to catch up on, I haven't really had a specific point or moral to the story lately. SO I suppose it's a regular old State of the Union type blog this time around.

Jackson is doing well! He's still packing on weight and has developed a glorious little double chin. He's still built a bit like a worm, but I'm afraid that's just how he's going to be. We have had to bump him up to three breathing treatments a day, but it seems to help, and we have an appointment at the CF clinic in a week or so to reassess everything and will see what his Dr says. He likes to grab his nebulizer and hold it himself, which makes giving the treatments not only easier, but much more adorable. He will be TWO MONTHS OLD on Tuesday. Two months! I'm still reeling from the realization that I'm not pregnant anymore (woo hoo!). I'm not sure my mind has really processed everything else, it's far too busy with the day to day. He'll be getting his first round of shots. After years of deliberating, researching and debating the vaccination issue, Jackson having CF seemed to dissolve the ambivalence for us. He simply doesn't have the immunological resources for us to feel comfortable or justified in altering his vaccines or vaccination schedule. The current recall of children's Tylenol products due to possible contamination with B. Cepacia, a bacteria particularly harmful and infectious to CF patients, will mean he does his vaccines without pain relief. I'm not excited about that, but the prospect of him building up a bit of immunity means I may freak out just a little less when people get too close to him in public. More on that lovely bit of paranoia in a moment. If you need more info on the children's Tylenol and Motrin recalls, here's a link for the clicking! http://www.mcneilproductrecall.com/page.jhtml?id=/include/new_recall.inc One of these days I will master making better links, but for today, that's what ya get!

Emily is adjusting well. God love her, that child is about the most resilient and adaptable little human I've ever encountered. And her insane little schedule keeps me feeling like any other harried mom out there, driving to softball and ballet and conferring with teachers. Although she's learning how to be one sassy little bit, and that's one bit of normal we're trying to nip in the bud.

I wish I had some super poignant anecdote about it being Mothers Day. I don't. I had a lovely day in spite of being up too early and being sick part of the day. I didn't get to see my own mom, but did get time with my Mother in law and her mother, which was wonderful. Emily made a special effort to be good, and as always, was very sweet to me. The simplicity of it was what made it so good. I got to stop and thing about how much I love my life and am happy to be "Mom, the Unsung Hero".