Tuesday, December 7, 2010

SixtyFiveRoses, the color!

****Update. I do still have this item for sale. I made the initial deposit to our Great Strides team for $127.89. If you're interested in purchasing some, send me a message!****

This is my favorite fundraising event yet! I put my head together with Lela Warren, the proprietor of Glittersniffer Cosmetics to come up with the perfect color to raise funds for Cystic Fibrosis. Glittersniffer is a fabulous, funkadelic, high impact line of mineral pigments that are completely vegan, handmade, small business goodness. Win/win!

The color we came up with is a vibrant royal purple that sometimes toes the line between itself and blue, packed to the gills with shimmer and holographic microglitter (teeny-tiny iridescent glitter that catches the light like diamonds).

I have been playing with the stuff for a couple of days and it is versatile as all get out. Being that it's a pure pigment, you can add it to just about anything. I mixed some in with my favorite clear polish and had a rad manicure. Mixed 'er up with some brow gel and dabbed on a wicked intense eyeliner. If my hair were lighter you can bet it'd be testing it out in hair gel. I will add more pictures of my experiments as they come, but I am anxious to get this up, so I'll just start with these two looks.



My makeup skills are much like the rest of my life, experimental and haphazard. If anyone wants to send in their looks after ordering I will be thrilled to share them too.

Every single penny I make from this is going to the CFF through our Great Strides team, Hope for Jackson- including my initial investment. If it is successful I'll be ordering more and coming up with new colors. Lela is an amazing, huge hearted person who was more than happy to give me an incredible deal to help raise money and I really hope to work with her again.

If you would like your very own pot of SixtyFiveRoses, please use paypal to send $8 (includes shipping) to HopeForJackson@gmail.com Include your name, mailing address, and an email where I can reach you if need be.

UPDATE: If you would like to order from the UK, or Canada, here are the conversions & shipping rates!

UK- Please send GBP $6.13

CANADA . Please send CAD $8.70

If you would like to see about shipping to another country, Please met me know! I will do whatever I can to keep shipping costs low.

I have just sent out my first round of orders, thank you so much for the support! If you have any questions, thoughts, or ideas PLEASE let me know!

Sunday, November 21, 2010

Managing and Surviving Guilt

EVERY parent deals with guilt. Some parts of our society thrive on it. I had a pretty good handle on Mommy targeted guilt until CF came into the picture.

Guilt is one of the stages of grief. Somehow, I thought I could skip that step in the process by holding hands with my old friend logic. Logic told me, in no uncertain terms, that Guilt was silly. That we had no known family history in our very large families of CF, that we had no reason to think we might be carriers. My wrestle with Guilt on that issue was very small and very short lived, and I believed the two of us had parted ways with the knowledge that Guilt was certainly not a welcome guest.

In the long run, it's not so simple. There are other places Guilt sneaks in, both logical and shockingly ridiculous. I have to be vigilant not to let Guilt in, because he has a tendency to make himself at home, pee on my rug, and punch me in the eye. And Guilt pops in at the least convenient times. Having a child with a life threatening condition like CF can also lend you to survivors guilt and post traumatic stress, very real and serious things to struggle with. And since parents like us are fighting to keep our babies healthy and live as normal lives as possible, those feelings can easily be denied and ignored. In an effort to normalize the things we cope with, and may be feeling, I'm going to do the most uncomfortable thing I can think of and let you in on my little mental breaks. It happens to all of us.

I always thought my coping skills were far above the norm. I am intelligent and have a good understanding of my sons disease. I work every single day on maintaining a good attitude and instilling the same in my children. I try to be a good example for other parents stepping into this world of uncertainty. I have a very happy life and a stellar family, J is maintaining an excellent level of health thus far. Really, what do I have to be guilty or sad about? (Here goes)

My child needs me even more than 'normal' babies, so I can't ever focus on anything else or I'm not taking good enough care of him/her:\par

I feel guilty that I still care about things like my looks. I feel guilty for taking the time to fix my hair or work out.
I feel guilty about how much of my time is spent having to choose which of my children needs my attention more, and that by the default of the time necessary to complete J's daily care, Em is often on standby
I feel guilty that Em suffers from CF, not from having it, but from fear and worry about her brother, and that now for her too, these feelings will never go away.
I feel guilty that someday I may have a moment in my life not dominated by CF, because Jackson never will.
I feel guilty when I'm weary.
I feel guilty that when I share everything about Jackson but keep more to myself about Emily in an attempt to keep CF from dominating SOME aspect of her life, it looks like I care less about her.
I feel guilty that I think about a day that isn't dominated by pills, vials, ampoules, masks, and reaching insurmountable caloric goals.
I feel guilty for my relatively easy health.
I feel guilty that I spend so much time thinking about my own feelings.

I KNOW, these feelings are impulses, not logical thoughts. I know I am a very good mother to both of my children. I know it's perfectly normal to struggle with how you 'should' feel about things. I also know I am not alone in dealing with this. WE as CF parents have some unique challenges, one being the sheer quantity of possible issues and complications we face. If I was running a business and had more work than I could handle alone, I would hire someone to help reduce my load. I have adopted the same philosophy towards caring for my mental health.

I hate talking about it. I don't like to admit that sometimes I can't handle it alone. But I think it's incredibly important to normalize these struggles as part of our CF lives. Don't be afraid to talk about it, or get some help for it. Regardless of your financial or insurance situation, there are resources. In order to be the best parent and caregiver you can be, you have to continue to take care of yourself. If you want to be the tree from which your family is nourished, don't forget to water your roots.

Are you struggling to cope? Think you might be experiencing symptoms of PTSD? This page has many links that might help, including a crisis hotline:
How to Find Help

Monday, November 8, 2010

Bacon Blitz and BMI (the journey to the top, and back down, and why I'm definitely not overfeeding my kid)

Today was a big success. After two months of weight loss, infection, hospitalization, and near breakdowns on my part, we finally got some tangible evidence that our vigilance against CF is again paying off. Some of the story I have to preface, as I don't really feel all parties understand why or how we approach some aspects of J's care.

Check out the pic of his growth chart. At his first appointment at Cooks, Jackson was skidding along the bottom of the charts, not growing in either length of weight. We tried more frequent feedings, increasing my breastmilk supply, still he didn't gain. Flatline. In late May I sat with his dietitian and talked about supplementing my breastmilk with some powdered formula- just enough to put more calories into him, at three feedings a day. I was an avid breastfeeding advocate, teaching classes at my local WIC office. It was HARD for me to do, but I knew we needed to take a next step. Let me also say I had an incredible support network, not a single doctor, specialist, friend, or family member ever even hinted that I should stop trying to nurse. Jackson immediately began to climb the growth charts. After a couple of months, his little old man muscly legs turned into sweet round cherub chub. By August he tipped the scales, clocking in at the 90th percentile for length and the 75th for weight. We were all positively basking in it every time somebody said "he doesn't look like a CF baby!" Growth Chart

When the infection that ultimately hospitalized him set in, he lost over a pound, and quit growing lengthwise. All of his graph plots steadily declined. We knew that would happen if he got sick, which is why we are so intense about keeping his weight up when he's healthy. He needs some wiggle room, if you will. And body mass correlates directly to lung function, so we're not giving an inch on our intense feeding. It's not dangerous or tragic that he lost weight, but it's also not an acceptable place to stay. I want my son to reach his maximum growth potential. I don't want him to be healthy "for a CF kid". I want him to be HEALTHY, period. I'm not going to let one rebellious protein determine everything. We are going to get back where we were, at the top of the charts, and maintain a 'healthy for anybody' BMI, height, and weight.

I have to explain my motivation, because sadly, it's not met with unanimous support. I have had some great exchange with other CF mamas about getting extra calories into our kiddos, and believe me, even with a one as robust as J, it can be a challenge. Some of the things we do- add heavy cream or half and half to food or drink, add coconut oil, flavored fish oil, and olive oil wherever possible. Bacon. Nutella. High calorie formula (for those of us that use formula). We still get in all the healthiness of fruits and veggies, and keep almost 100% organic. J's recent love affair with bacon has raised some eyebrows. Mostly I say, bugger off, you don't know what you're talking about and I do. I've been here since the beginning, I've done the math, I know that at 8 months old, I have to get 1500 to 1800 calories into him EVERY DAY to get him to grow and gain normally. That's more than I eat in a day. And he doesn't eat MORE than other babies, usually, so that big number has to be fit into little portions. It's hard, unending work. I also want to point out, the unhealthy effects of excess fat in a diet don't affect Jackson. To his body, it's not excess, it's just enough. I'm not giving my baby a coronary, so relax. It's kind of astounding that it takes that much to sustain him, so I understand that not everyone is going to comprehend it. The difficult part is when I get less than awesome support from fellow CF parents. AT that point I try hard to understand that even though they work every bit as hard, not all are as successful in the venture to gain, and it may be difficult for them to watch someone else do it more easily. I can understand that.

The moral of the story, kids, is that doing some completely counter-intuitive things is our key to health. IF you don't understand, or are curious, ask me why we do it! I won't be offended, and I'll TRY not to talk your ear off. Until then, let my baby eat bacon in his applesauce, and dip his fries in olive oil mayo, in peace.

I post today in celebration. Jackson has been cleared to go six weeks until our next clinic check up. Love and light.

Sunday, November 7, 2010

Hospital Photo Journal

At long last, the photographic diary of our misadventures in the Pulmonary Ward, as told by Jackson himself.

Day 1 was pretty easy. A few pokes, a lot of papers...

Day 1
And everyone who came in really, really fussed over me.

Room With a View
I stayed in the Presidential Suite, we had quite a view of the Atrium, and saw lots of things down there!

Some of them made us a little sad.

But the symphony made us happy!

One Down
I went through 5 IV's during my stay, and since I'm on the chubby side and my veins are small and like to 'roll', it was a lways a challenge to place the next one.

I was glad the people who did it are so good at their job.

Hard Day 2
The day I got my bronch was long and hard.

Both of my Grandma's sent me flowers to cheer us all up!

Flora 2
How many babies get flowers? They brightened up our room and looked so pretty!

I liked when people came to visit.

I was finally starting to feel like my silly little self again, so...

Discharge papers
They decided I could go home! Dad signed the papers....

Dad take out the IV
...and then he took out my IV. (He's a paramedic, he can do that!)

Saying Goodbye
We said goodbye to all of my new friends...

And my Mom and Dad have never been happier than when we walked out this door. Lots of other stuff happened too, but sometimes Mom was too busy to take pitcures.

Thursday, October 21, 2010

Home Again, Home Again


Well, suffice it to say I'm no professional blogger. There's such a mass of lag time between my posts I probably lose half of my readership each time. But at the moment, Em is slack jawed and spread out upside down on her bed and Jacks is spooned up to his sock monkey, Mike is tending to a broken down ambulance and I'm pouring what the bottle says is an award winning glass of Moscato, batting down the hatches and catching up the best I can. I'll try to cover the important stuff without boring you to tears.

The bronchoscopy went well. Although we discussed at length the risks of the procedure, we decided to go ahead and see if there was an underlying infection causing J's symptoms. He had been in the hospital 5 days, and although the wheeze was better, he was still running an elevated blood pressure and low o2 sats. There was still a lot of 'junk' in his lungs, and if there was an infection present that the throat and nasal cultures hadn't detected due to geography, he would end up right back in the hospital. There is also the risk of long term damage and scarring to his lungs from undetected infection. In the end, we decided with his doctor that we would go ahead with the bronch. He took the sedation incredibly well, didn't look freaky or pass out, just became very relaxed and gave me a slow smile when I kissed him as we left the procedure room. The waiting room made me so uncomfortable. A woman in there was sobbing for whatever procedure her child was undergoing and I was more upset for her pain than nervous about Jackson.

The day Jackson was diagnosed we walked through the halls of the Hospital carrying him in his seat. My face was mottled and swollen and my eyes looked like I had been on the losing end of a prize fight. I saw a flicker of recognition in the faces of other parents who looked at me and wondered in that moment, when I would be the one to whom it was old hat, feeling the memory of past trauma as I glanced across the weeping newcomers. That moment came more than once during our stay.

This woman, whose husband sat stoic but red faced and held her, whose mother came and took her turn bracing her sobbing child, this woman who was in fear for the life and well being of her baby...this woman was intensely upsetting to me. I just wanted her to stop. Pardon my language, but I'm absolute shit at processing my own emotions, and it's near impossible to deny the danger of sorrow when you're watching another mother grieve the pain of her child from only feet away. There were several moments like this during our ten days. Very sick children, weeping mothers, visible reminders of some of the worst life has to offer. They always upset me more than the fact that we were there. I spend so much of my waking life trying to accept J's disease rather than grieve or be angry that a hospital admission seems more like a necessary chore than a pitfall of heartache. But seeing it happen to someone else is excruciating. I am also reminded that while our path is not the one of least resistance, I could be reasonable sure I was leaving that building with my baby in my arms. I'm haunted by the question- which of those mothers will not be as lucky?

Ultimately the bronch turned up no infection. Around day 8, Jacks stopped waffling between puniness and recovery and really started to seem himself again. His appetite stabilized (without the help of steroids), his weight began to climb more steadily, and his trademark grin returned to the delight of his many enamored nurses. A couple more days to ensure he was indeed on the path to wellness and we were allowed to bring him back home.

When we got home it was the strangest feeling, as if those ten days had passed in a dream state, just time lost forever. I had both of my children back under my roof again, I could let go of the guilt that felt like I was having to choose to be with one or the other of them. I'm now basking in the glow of the mundane, again newly appreciative of the things we all usually take for granted. And I should be scrambling to catch up on all the things that went untouched for ten days, but most of them will keep.

This hospital stay was also kind of a wake up call. In spite of my best efforts I wasn't completely able to stave off the idea that Jacks' prior robust health, 'easy' weight gain, and lack of serious infections meant somehow he had a 'lighter' case of CF. His mutation (homozygous Delta F508) is known to GENERALLY be one of the more pervasive, and CF is progressive. We were so lucky to have newborn screening intervene before he failed to thrive. All of these factors put him ahead of the curve and made it almost possible to believe he wouldn't have it so hard. The truth is, we don't know how 'severe' his case is, and only time will have that answer. But I am reminded that this is without a doubt Cystic Fibrosis, and we will be locking horns with the ugly beast until a cure is found.

There is more... more detail I'd like to impart. The relentless schedule of breathing treatments, PT, antibiotics, steroids, and regular meds. Insane tips, tricks, and antics in an effort to get this baby to eat. Vital sign checks, weigh ins, blood draws, and 5 separate IV's. Nurses, respiratory therapists, housekeepers, social workers, child life specialists, doctors, phlebotomists, care partners, and volunteers streaming through our doors at any and all hours of day and night. Carefully planned symphonies and impromptu surgeon serenades down in the atrium. A bona fide celebration and congratulations echoing from every corner as we made our grand escape. Hours of quiet rocking with tiny pink fingers stroking my cheek. Hours upon hours upon hours.....just being, just waiting. Waiting for the drugs to work, waiting for the cultures to grow, waiting for a visitor to break the conundrum, waiting to see if our world still existed outside Cook's candy castle. We were more than slightly pleased to discover it did.

In those ten days, we lived in a microcosm of emotions. The worst of the worlds fear and pain live without pretense within those walls. But Hope lives there too, and it shows itself in the strangest of places. In the pink glitter on a little girl's chemo stripped head. In the peals of laughter emanating from the play therapy room. In the brief smile and outstretched arms of a little boy coming out of sedation, there is unlikely joy. The moments you have mean infinitely more than anything you don't. Which is perhaps why I'm such an unreliable blogger. My priority is living each of those moments, and I sometimes forget to document them along the way.

(I did photo-document much of our stay, but haven't uploaded or edited any pics yet. I'll roll out a photo-only post this weekend. Pinky promise.)

Wednesday, October 13, 2010


Tomorrow at 8am, Jackson will have a big breakfast, his last good meal for a little while. Sometime after noon, he will get some local anesthesia and some sedatives to make him sleepy and relaxed. Then his doctors will send a small, flexible scope down his airways and into his lungs to have a look. They will irrigate with some saline and take a sample of mucus that lies deep within his lungs. This procedure will allow them to test if he has an underlying virus or infection that has not made its way into his throat and nasal cultures.

When I first learned of this possibility, it was scary. It seemed too invasive for his little body. But much like other aspects of CF care, I adjusted quickly in order to keep my boy as healthy as possible. This will give us some answers we don't yet have, and rule out underlying problems that could ultimately cause permanent scarring and lung damage.

Right now I'm not nervous. He had a great day, and really seems to have turned the corner on this illness. He's still a little clingy and moody, but he is smiling and playing again too, and his appetite is returning to its former ravenous state. Since being admitted he has learned to wave, click his tongue, and make kissy sounds. I have to keep him in the best condition possible. I have to keep those little lungs mint condition, because the answer is coming. The day is coming where CF will be manageable, not fatal. The day is coming.

To my CF family, I love you so much. Even though we are different, as individuals are like to be. Even though we've never met, I love every one of you as if we were blood. Thank you for giving us a place to be normal, and for the unflinching kind of support you can't find outside. Yes, I repeat myself, but- I love you so much.

Everyone else... I love you too. I still say I'm only human, and not worthy of your admiration, but I love you intensely for the unwavering support.

I will report again tomorrow, now that I've discovered how to blog from my phone. All typos must be ignored and forgotten until sych time as I return to a computer.

Tuesday, October 12, 2010

Hospital Updates

How the time it works against me! I had a couple of posts building in my brain that I was going to finally sit down and spit out after we knocked out the garage sale. Most of my lovely readers know that all of the goods were shoved hastily back in the garage when we were told that the nagging wheeze meant we were headed for our first hospitalization. In the past five days I have lost so much detail I would have liked to share. Not having a reliable laptop to bring along, or the spare item to actually log on the hospital computer service, many of the reactions, glimpses, and feelings have been swept away by the un-ebbing current of inpatient care. I will have to settle, at the moment, for giving you the highlight reel, and promising to document better in the future.

The things I need you to know:
Jackson was not admitted under emergent conditions. There was no drama, no lights and sirens, gurneys, or shouting doctors in scrubs. There was a little paperwork at registration, a visit with our team, and some settling into our amazing room. It's like the Ritz of hospitals, yo.

We are not emotionally devastated wrecks, just barely holding it together or putting on a brave face. We were prepared for this, inpatient maintenance is an inevitable part of even the healthiest CF life, and while we hope it will be shockingly infrequent, we don't look at it as a terrible thing. As much as I am endlessly flattered by the praise of being a brave, strong momma, I'm just a Momma. I have no doubt that you (because all my readers are decent human beings!) would do the same in my shoes. Which brings me to...

There is nothing like walking the halls of a Children's Hospital to make one count themselves among the lucky. The hardest part of this experience is being in a building where the suffering of the innocent is concentrated and displayed without cover. I have to make a conscious effort not to be swallowed by it sometimes. At the same time, the compassion we see here by every volunteer and staff member is without compare. The mission statement at Cook Children's Hospital is more than words, it is [resent iin the actions of every single person I have encountered.

I will have to share pictures with you at a later date. I have been taking some at the hospital, but we will have to be home and settled before I upload and take a look at them.

Em's dad and his girlfriend have been very helpful and supportive with her during all of this. She has handled it all in stride, as my girl is like to do, but when she gets home at night she worries-as my girl is also like to do. We have decided that for the next few days it will be healthier and happier for her to stay with them, where there is routine and normalcy. They have also been good enough to offer to bring her for visits, which does my heart good, as Jackson's face simply lights up when he sees her. (And his legs kick madly and his arms flail with glee)

As for the man of the hour, he hasn't really decided how long he's going to stay yet. His symptoms will fluctuate and his weight does the same, leading our doctors to not necessarily be overly concerned, but neither pleased with his progress. They- and we, honestly expected a fairly hearty turnaround after a few days if IV meds, and he just hasn't been able to kick it like that. If he continues to stall or backpedal in the next day or so, we'll be taking more aggressive steps to look into the root of the illness. It's all very "if, then". And I will keep you updated one way or the other.

One thing I am for sure, is a bit over tired. Even the stealth nurses can't always ensure a solid night's sleep in the joint, so we are a ll a bit on the sleepy side. Having said that, I'm signing off for now with a heart full of love and grace. When things are ideal and less than, the support we have been shown is nothing short of bracing. Perhaps the reason I've not been overwhelmed and upset by things is the indescribable amount of love and support that literally feel by our family, friends, and strangers alike.

Friday, October 1, 2010

Head, Heart, Lungs

This post has been brewing for a while now. First, I didn't really have the words to put it in....then I was late on my Internet payment ;) Excuse my emoticons. Head

As you know, Jackson was granted an eleventh hour pardon from a hospital stay last weekend when his o2 sats (oxygen levels in his blood) suddenly dipped to a borderline dangerous number. He recovered, and came home to finish kicking the virus that was the culprit of our little adventure. He didn't get well as quickly as anticipated, and has lost close to a pound due to his lack of appetite. Since he's also only six months old, we don't really know what to expect of his particular case of CF. He hasn't had any real run ins with illness yet, so we don't know what his tendencies are. That leaves for a LOT of questioning whether I'm overreacting or being appropriately vigilant. After many phone calls between his nurse and I this week, we went in today to follow up on all the action. Although his spirits are good and we've managed to curb the weight loss (with diligence and coconut milk!) , he still has a rattle and wheeze you can hear from twenty paces, which was concerning. The nurse also noted that his retractions were visible through his shirt. The gave him a breathing treatment in office and reassessed his lung sounds. News was good, as the resident mucus was thin and movable, and since all his vitals were good, we would get to go home again today. We decided with his team to try another round of steroids to oust the funk and are to report back after the weekend on his progress.

There have been some stressful and worrisome moments over the last couple weeks. I haven't gotten a lot of sleep, either, since I have 'mommy hearing' and awake every time he so much as sighs. It was unnerving to see his skin suck in around his ribs when he struggled to breathe. He waffled back and forth between restoration and decline, and I questioned just about every decision I made regarding his care. I relived his diagnosis some. I cried when no one was around. I wondered if our impossible run of prime health was coming to an end and CF was going to really make its presence known. Combined with financial stress and missing the outside world, I was a little beside myself. I longed for the sense of grateful wonder I felt a few months ago, when everything was a gift and nothing was taken for granted.

Ask and ye shall receive, right? Jackson didn't hit the wall, health-wise. I'm confident he will recover from this, and that it was a relatively mild illness. He has access to top medical care. We are unbelievably lucky that his pediatrician at the medicaid clinic is vigilant in staying on top of his progress, and communicates with our clinic doctors before and after every visit. (that's not the norm, even with private insurance peds, from what I understand.)
In addition to all of those gifts, there's the absolute glut of information coming out about CF. Even since my journey into this world only six months ago, I've noticed a markedly accelerated outpouring of data, research, and discoveries. From the mapping of the Irish Genome, to crosstalk between ion channels, to the amazing potential of the Vertex drugs in clinical trials, I'm left feeling like salvation is a breath away. My heart is in the rafters with the hope that my baby and all of his CF compatriots will grow OLD together. Their lives won't be marked with pain and struggle just to draw breath. The fact that this is a real, palpable possibility and not a hope we merely cling to out of desperation is too big for words and it swallows me whole.

And when I think about all of the brilliant hope shining ahead and the blessings of the present, I can't help but think of the past. Of the people who have suffered. The ones celebrating transplant anniversaries, or desperately waiting on a new set of lungs. The ones whose lives have been studded with endless pills and machines and therapies and surgeries. Flesh and bone warriors to whom middle age has previously not been an option. The ones who only a generation ago rarely even made it to school age. The ones I follow and talk to now daily, and those I never got the chance to know.

And then I feel guilty for feeling bad for our situation. I try not to. I try to allow myself room to process my emotions and recognize my feelings in healthy ways, but it's not always possible. It's very similar to survivors guilt, what I feel. How is it that we should be so fortunate while others still suffer so deeply? I recognize it as the wild card, the uncontrollable variant, but it's still hard, and on occasion, the guilt wins out, if only for a moment.

For now we soldier on, indescribably grateful for all we have, try to help those who's struggle is harder than our own, and retain compassion for those who have yet to understand adversity.

Friday, September 24, 2010

Dodging Bullets

This morning I was marveling over the words "Well Baby Visit" and mentally celebrating having made it to another milestone of health. I scrambled around on little sleep to get Em off to school, Mike to an interview, and Make J's 8:30 appointment, none too thrilled with the chaos.

We made it to the Neighborhood Clinic (aka the only peds in town that take Medicaid) in plenty of time to be the first people in the waiting room. I believe I've explained before how I feel about the creepy crawly germy nature of the waiting room there. It's a veritable haven for snot-licking, dirty children whose parents apparently think little of discipline or hygiene. This morning in particular, a girl of maybe 20 came in with her two toddlers, (possibly twins) barefoot and coughing in all directions, and decided to sit only a few seats away from us. As the kids pestered and bickered, the mother (I use the term loosely!) grabs her little boy by the upper arm and picks him up in the air, dangling him above the lobby like an alley cat. "You do that agin' an' the police are gonna come take you away" The wily tot squirmed easily out of her grasp and was met with a gratuitous eye roll as he returned to his chair-business unabated.

I shifted my weight to ensure maximum security and coverage of the car seat carrier. Butt on the very edge of the seat, scoot car seat up so the handle is lodged between my knees, pull the sunshade up as far as it will go so as to completely shroud J from airborne imminent disaster. I no sooner perfected the Mother Hover than I heard IT. The unmistakable sound of a six year old girl heaving from the bottom of her toes and vomiting with the force of a pea-soup possessed Linda Blair. Along with the sound effects came the sick and sudden realization that something acrid and wet had landed on my arm. I was in the splash zone. It was like she was Gallagher and I was in the front row during the sledge-o-matic bit. Half of the clinic unceremoniously rearranged itself to gain distance as her father stood over her and simply watched as she emptied the contents of her gullet onto the waiting room floor. I hand-sanitized myself from shoulder to fingertip and waited to be rescued from Dante's 4th circle of hell (the waiting room).

An hour later I was ushered back for vital check, where I learned that J's erratic appetite had, in fact, resulted in a slight weight loss, and vowed to redouble my efforts to increase both the number and the quality of chubby little fat rolls on his legs. In the time I waited in the patient room, Mike finished his interview and arrived to accompany me for the rest of the appointment. the cough that spurred yesterday's administration of a 5 day course of Orapred (steroid) began to show itself while we waited, and dark pinkish purple circles asserted their presence beneath his smiling eyes. By the time the Dr made her appearance, he was in a totally different state than when we had arrived. His chest was contracting- or sucking in under the rib cage, with each breath, demonstrating that he was struggling to breathe. A check of his 02 sats (or Pulse ox, meaning the amount of oxygen present in his bloodstream) registered only 92%, which I'm told is a level enough to make a grown man dizzy and disoriented. The doc ordered an Albuterol and Atrovent treatment on the spot and hopped on the horn with our pulmonologist.

After the treatment, he registered at 94%, an improvement, but not near the 98-99% we wanted to see. We were told that the CF clinic was expecting us soon, and we should plan to be admitted to the hospital. We were instructed to go home and pack, get lunch, and head to Cooks. I choked a little. We had come in with a robust and stout little trooper who was just trying to kick a little bug out of the pulmonary plaza, and were leaving with a baby sick enough to need inpatient care??

I needed a moment to reconcile it all in my head. On the way home to pack, I reminded myself HOSPITALIZATION IS NOT A TERRIBLE THING. If he needs to be inpatient to receive care aggressive enough to fight infection and prevent scarring and permanent lung damage, then we will gladly do it. We KNOW hospital time is par for the course, and we've made it almost 7 months without serious complications. If you're new, that spells CF success. Time in "the hole" isn't something to live in terror of or cry about. But the turnaround was fast enough here to be jarring. I mentally rearranged, or erased, rather, any plans I had for the weekend, threw anything I anticipated needing in the immediate future in a bag, and we headed to Cooks.

Vital check at the clinic was much better, 02 sats came in at 99%. I exhaled. Dr D ordered a chest x ray, and within minutes we were reviewing the results. While it's clear J isn't at the top of his game today, Dr D said his chest films looked even better than the initial set we took at the time of his diagnosis. After carefully discussing our options, he decided that there wasn't much to be done at the hospital we couldn't do with a rigorous regimen of treatment at home . He didn't require IVs, so everything we need to do can be done from the newly appreciated comfort of our own home.

I know sooner or later we'll need a stay in the hospital, and I'm so glad we have such an awesome one to go to when that time comes. But tonight, I'm positively with gratitude that it's not today. I've never been quite so glad to have a crazy baby ramped up on steroids squirming out of my arms as I try to dose him up with half a dozen meds.

(the consensus about why Jackson's condition changed so rapidly is that he may have dislodged a mucous plug. Once it worked its way out, the respiratory distress waned and his 02 levels stabilized. We have seen him do this once before, but didn't happen to be hooked up to medical equipment to measure his levels at that very moment)

Sunday, September 19, 2010

No Fury Like a Mama Scorned

The following is a copy of the email I sent to the corporate headquarters of CVS today, after being treated like a beggar at their counter for the LAST time.

My husband and I have been regular customers at the CVS at 3614 Camp Bowie Blvd in Ft Worth Tx for the last 6 months. Our newborn son was diagnosed with Cystic Fibrosis and requires several prescriptions each month. During our time with this pharmacy, not ONCE has a prescription been ready on time, in spite of my calling in refills a minimum of 24 hours in advance with a desired pick up time. There have been instances of incorrectly filled scripts, causing my son to run out of a medicine he desperately needs almost two weeks early, in which the employee demanded I must be mis-medicating my child because they were incapable of making an error. Today we were forced to make two separate trips to the pharmacy because the prescriptions I have been trying to fill for over a WEEK weren't ready, after they had called us to report that they were. Once all medications were finally acquired, we realized that the tech had neglected to give us a 1 ml dropper for the ranitidine syrup, again. When my husband asked her for one, she refused to give him any. She told him to go find them on aisle 9. CVS does not sell 1 ml droppers, which we informed her, and she again told him "aisle 9" After looking, in vain, on aisle 9, he tried to explain that the only one we had no longer had markings on it due to repeated use and we needed at least one to ensure proper dosage. She shoved a 5 ml dropper across the counter and walked away. I would like to challenge you to use a 5 ml dropper to dose and administer a .25 ml medication and do it accurately, delivering all of the medication.

Ultimately, I am beyond sick and tired of the foul attitudes and blank stares from the staff at this pharmacy. I believed that after a time of being regular customers, the staff would remember us, the medications we get, or at least that we are loyal customers. I stuck it out for six months through this kind of abhorrent customer service in hopes of establishing a long term relationship with the pharmacy and it's staff. When I finally called today to speak with the pharmacy manager about these ongoing instances of poor treatment, I was placed on "terminal hold". I am furious, livid, and disgusted that this is all the more your business cares about it's customers. All I am trying to do is accurately and efficiently fill the prescriptions I need to keep my son ALIVE AND HEALTHY. Perhaps you should review your hiring practices if your pharmacy staff doesn't share that vision.

Feel free to reach me at any time,

Amy Wynn

(followed by email address, phone number, and a link to this site)

Monday, September 6, 2010

Monumental Milestones

BirthdayThis coming Saturday will mark Six Months since I took Em to her riding lessons with contractions 4 minutes apart, drove myself to the hospital (the long way) with contractions 2 minutes apart, stopped to fix my makeup before checking in at L&D, and re-enacted the birth scene from Knocked Up.

Six Months since I was afraid of the green muck when my water broke, since the NICU staff attended the birth. Since my husband didn't get to cut the cord and we didn't get to hold Jackson until he was almost fifteen minutes old, and Six Months since I didn't mind because he didn't aspirate any meconium and he was ok. Six Months since Mike, my OB and I were all momentarily taken aback that the baby projected to weigh in at almost ten pounds checked in at 7 lb, 11oz. And six months since I marveled at the wide eyed gaze of a little tiny boy with huge hands and bowlegs. Six Months since so many tiny little landmark moments I'll never forget.

That means that 19 days after this coming Saturday will be another Six Month Milestone. Six Months since the phone call that separated the world that existed before that moment from everything that has happened since. Since we met our champions at Cook Children's Hospital, became intimately linked with the CFF. Six Months since ...Cystic Fibrosis became the vernacular.

Happy BirthdayIn coming to terms with Jackson's diagnosis, I've cycled and re-cycled through 'stages of grief' again and again. I've dealt with what I recognize as some irrational trains of thought. One particularly illogical coping mechanism has been the thought that if he made it to Six Months without and infection or hospitalization, he would be ok. That would mean his case wasn't terribly severe and life as we know it wouldn't end. I'm fully aware what a faulty ideation that is, and yet, it's lodged itself in the back of my head all this time. And here we are, on the cusp of passing that irrational benchmark, and waving it in with more questions. We've made it this far. Not only that but we've exceeded all medical expectations. My impatient nature is barking at the door of the Six Month Milestone, asking....what now???

I want to know what's going to happen. Truth be told we still don't know the severity of Jackson's case, the only thing that will tell is time, time, and more time. We know we've been beyond lucky so far. There is no way to know what the First Winter holds, and right now we're bluffing. Staring down cold and flu season with bluster and bravado, holding hands with the unknown, and simply moving forward.

What I do know is this: every time I think about how fortunate we have been and continue to be, I choke on my own tears. Every day of health, every time I realize how long it's been since I heard a coughing fit, every single normal developmental milestone my son passes like a bandit on the run sends sweet, hot little reminders dripping off the tip of my nose and splashing daintily onto the keyboard.

I can't pretend to bargain with the future, and I don't care to wallow- or revel- in the past. As usual, I end my post by swallowing up the present and being reminded that each passing moment is a lesson in both gratitude and patience. SockMonkey!

“One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” (Author Unknown)

Sunday, August 29, 2010

Moving Forward, Looking Back (and Clinic!)

I've been a terrible blogger. I freely (but shamefully) admit that. It seems strange that life has slowed so much in the past few weeks and yet I've had LESS time to write than I did when we were in the thick of the 2010 Apocalypse. New baby, new diagnosis, new places to live, new jobs...

Things finally slowed down and we aren't running on pure adrenaline. A routine is emerging from the chaos, school is in session, the weeks are rolling in and out like the tides. I suddenly find myself looking around and saying "what now?" Coming down off of a months-long adrenaline binge made me restless. I also began to feel...maybe a wee bit depressed? When Jackson was diagnosed the public outpouring was simply astounding. Astonishing. Amazing. You name it, I was constantly overwhelmed with grace and gratitude and it bubbled over and spilled all around me. I found it relatively easy to be positive even when I was sad. When the adrenaline began to wane, I feared the loss of my new enthusiasm. Suddenly every moment wasn't larger than life and I didn't know quite what to do with it.

It was a case of early onset apathy. The sure cure? A trip to the CF clinic. A trip to a children's hospital, as I've said before, encapsulates the best and the worst of life's experiences. It takes very little time in the waiting room for a body to realize just how lucky they are, and today was no exception. It's also a brief trip down memory lane, to the time only five months ago, when we met my Mother in law in the waiting room, and I explained how there must have been a mistake with the screening. A glance at the tubby little man in the car seat at my feet send tears bubbling up and trips the 'grateful and gracious' trigger all over again. It's impossible to believe I could be so accustomed to this extraordinary life.

My first indication of the caliber of this clinic visit came as soon as we weighed in. J was met with a chorus from the nurses, "we don't even recognize that baby, remember when he first came in how skinny he was?" "he sure doesn't look like a CF baby!". And sure enough, the scale doesn't lie. The anticipation for the little red lights to give up a number was unbearable, although J handled it by eating his feet. When they finally flickered their verdict, I was ready with my kilograms to ounces converter. Eighteen pounds, five and one half ounces. Then length...twenty eight inches!! His weight has maintained at the 65-70th percentile, and his height had rocketed up to the 95th. I want to turn his growth charts into a diamond studded platinum charm and wear it around my neck for the whole world to see.

The rest of the visit was about on par with the first part. 98% o2 SATS, crystal clear breath sounds, NO NEW MEDS, but a spankin' new nebulizer that works in half the time of Em's old clunker hand me down... We are increasiing his salt intake since he is such a sweaty little dude. He's been leaving salt rings on his crib sheets, and a blood draw confirmed that his sodium levels were just a tad on the low side, so we're doubling up for a while, at least until the weather cools down and sweating is less of an issue. We discussed whether it would behoove us to switch to an ultrasonic nebulizer, but since Albuterol and Pulmozyme are currently our only inhaled meds, we opted for an updated pneumatic for the time being. Thanks to Fatboy for a load of useful information on the topic! There's really nothing more I could ask from a clinic visit. It certainly put the shine back on things.

Photos in this post are from a family reunion last month. Shame on me for not sharing them sooner!

Next post: 6 Months of Very Merry Milestones

Wednesday, August 11, 2010

Cystic Fibrosis Does Not Belong to Me

This poor blog has been sitting for a week and a half waiting for me to add photos to it. Seeing as it going to take me a couple more days to get through the ones I have, I'm throwing this up on the page without them. I'll make it up to you!

As usual, when I've been dwelling on something less that brilliantly positive, I've hesitated to share. I don't want to be dark and heavy. I don't want to spread that junk, no sir, not me. But in the interest demonstrating honestly how we come to terms with things, I know I need to share. And as always, it makes me feel strongly the need to remind everyone that I'm aware just what an extraordinary love I have in this family and this life. I'm not a saddy sadpants.

However, just when I think my bright and shiny, upside-only attitude is firmly entrenched and unbreakable, I get blindsided by something I hadn't realized I'd need to deal with. My usual response to that is to deny it until it decides to put me on my ass for a day or two and face it. And it always seems to sneak out of the most unlikely places.

Last time I blogged I asked for intros and links to others in the CF community. I got a few and also struck out to find more ways to 'meet' others traveling the information superhighway in pursuit of like-minded company. It didn't take long to find the kind of voices I had been looking for. I have found blogs of other mamas, friends and family, spouses. The brightest, most resonant voices, however, are those of a few adult CFers I have come upon. Strong personalities, fabulous attitudes, genuine sentiments, and a willingness to share their lives. Cue the "hallelujah" chorus! Proof positive that my baby can grow up and lead not only a full, but an extraordinary life! Not only that, but these folks have been friendly and welcoming without any of the 'oh, poor dear' that I tend to encounter from the general public. I swelled with a kind of 'these are my people' pride, feeling like I'd made some sort of homecoming.

Slowly, up from the depths, quietly, stealthily, the realization tunneled its way from my subconscious...they're not 'my' people. I mean, the community. yes. the families, yes, all the wonderful people...yes. But not 'mine'. Jackson's. Cystic Fibrosis isn't my disease. It's Jackson's. I'm not the one with a degenerative disease. My chubby little smiling, giggling, jumperoo maniac of a sweet salty baby is. His meds routine won't be my burden for the rest of my life, it will be his. The physical pain won't be mine, it is his. Cystic Fibrosis does not belong to me, it belongs to my son. That's the knocked me on my ass part. After pushing it back and trying to strangle it for a few days, it got the better of me and I vented to a few close friends and let myself break down a bit. When I was no longer denying the feelings they had much less control over me, and I realized I had something valuable to take away from the epiphany.

CF isn't my disease. It's my cause, but it's not my disease. I'll never be the one living with it the way my son will, and as much as I wish I could take the suffering for him, I can't. It's a part of his life that right now I know better than he does, every cough, every poop, every medication, and every thump of his chest percussor is under my control. As he gets older, I won't be able to exercise control over any of those things, and will lose the feeling that I have any control over the disease. While that seems like a terrifying prospect, it serves to remind me how little control we really have over anything in life. We don't control our genes, who we're born to, where we start out in life. The only control we really have is how we choose to react to things. We can't control the rain, but we can choose to carry an umbrella when the clouds roll in.

It's good for me to have had this realization. I shouldn't start out on this journey thinking I can control the path we're on. I need to remember that while it's my point of view, ultimately this isn't a firsthand experience, it's me talking about my role in my family, my son's life, and ultimately his fight against CF. It's not all about me, and eventually I'll have to learn my place in his fight. I think we all need to be reminded of that sometimes. It's unbelievably hard to realize I'll be an armchair quarterback in my sons fight against CF when all is said and done.

If you want to check out my newfound 'inspirational voices, checkout CFFatBoy, RunSickboyRun, A Matter of Life and Breath, cfstinabug, and CysticGal. There are several others I'd like to list right off the bat also, but I don't want to overwhelm you! My world and my heart have grown by leaps and bounds in the short time I've been following these people (and others)

now, to get my butt in gear and tend to this neglected blog and my lonelyflickr account.

Thursday, August 5, 2010

Improving Access to Clinical Trials

This isn't my standard blog material, but it is INCREDIBLY IMPORTANT.

S. 1674 is a bill designed to help improve access to clinical trials for rare diseases. (Much as the title suggests)

Who, What, Why, in layman's terms:

Clinical trials establish the safety and effectiveness of new treatments so that they can gain FDA approval and then be distributed to patients who need them. When a disease is rare, the trials automatically start with a smaller quantity of patients able to participate. Finding patients who are willing and healthy enough to participate in these trials becomes a challenge.

When a patient participates in a clinical trial, they may have to miss work, travel, or do other things that cost them money. The trials pay a small fee to participants to help them recoup some of these losses.

Many, if not most patients with rare diseases need assistance funding their (very, very costly) ongoing medical care. Programs like Medicaid can be a lifesaver to these patients and their families. Medications for these patients can cost tens of thousands of dollars a MONTH. In our case, Jackson has some medications that would cost about $400 a month, and one that would run us $2000 a month out of pocket. That's just TWO of the meds he needs. The private insurance available to us would cost over 1/3 of our annual income before it would cover ANY of our expenses. Having Medicaid means we don't have to choose between paying rent and getting Jackson his medications.

So what's the problem? There are rules and limitations to qualify for Medicaid. There are income guidelines you have to meet in order to get assistance. As it stands now, money gained from participating in Clinical Trials is considered supplemental income. Patients are being disqualified for Medicaid because of the fees paid by Clinical Trials. Of course, when the ultimatum between medical coverage and ability to participate is presented, Clinical Trials suffer greatly, and the field of potential participants is narrowed even more.

In order to advance research, treatments, management, and cures for these diseases, Clinical Trials must be available to the greatest possible number of participants!

S 1674 wants to exempt income (the first $2000 per year) gained from participating in trials from being counted towards income guidelines for Medicaid. This will increase the number of patients able to participate in clinical trials, making them more effective, and hastening the advancement of treatments and disease management.

Help get S 1674 passed. You can start by writing your state representative to ask them to sponsor the bill. IF you don't know who your representatives are, finding out is as easy as clicking HERE . The site also has contact information for all your current officials.

What to do:

You can use this letter to ask your representatives to sponsor the bill. Just a copy/paste email will work, or you can include your personal story or connection to rare diseases and the need for greater access to Clinical Trials. You can forward it to friends and family and ask them to do the same. The more requests they get from their constituents, the more likely they are to sponsor the bill.

You can track the progress of S 1674 HERE . You can see if your Reps have co-sponsored or if you still need to raise awareness in your area.

You can organize visits to your representatives in person to lobby for S 1674.

You can link or copy this blog to any site you'd like to help spread the word. We need all the help we can get. (Also, should you spot any missing or incomplete information here, please let me know so that I can give the most accurate info possible!)

You can reach me here, by email at amywynn@live.com, or on Twitter as @FindingThetis . Thank you for crusading with us!

Tuesday, August 3, 2010

Into the Fold

I have a little request. Any readers here from the CF community, I could use your help getting into the fold a bit. Can you help link me up? Blogger, Twitter-ers, parents, spouses, siblings and other CFers? Or anyone of possible interest who doesn't fall into those categories??

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.