Saturday, December 12, 2015

3 and a half

Dear Kay,

You are 3 1/2 today! It feels very strange saying that because after you accepted the fact that your birthday meant you were no longer two (which you resisted for a few weeks) you decided to skip year 3 and go right to 4. I assumed it was a phase, but here we are 5.5 months later I still have to tell people you are June...or else face the wrath of a child who has been called the "wrong" age. It feels like I am going back in time saying you are only 3 1/2.

Your age is not the only little fib you tell (and believe with your whole heart) these days, you also are convinced that you are fluent in French (on top of English and Spanish). Now, to be fair you know more French than I do, but counting to ten and saying a few catch phrases hardly counts as fluent. The other day I overheard you telling your 2.5 year old cousin (who has never said a word of French in his life), "J, I haven't heard you speak French in a while can you say, bon bon?"

Speaking of language, your understanding of Spanish had exploded these last 6 months. Unfortunately, I can't take any credit for this development. Your father speaks to you only in Spanish. Actually he does it so well that the other day when he slipped and said something to you in English you shouted, "But dad, you don't know English!" I guess you never noticed that your dad and I only speak English to one another.

My favorite part of the day is when you first wake up. You shout from your bed every morning between 7 and 7:30, "Is it morning?" When I shout that it is in fact morning, you crawl into our bed to snuggle before we start our day. You have always been a snuggler and that has not changed. You love showing affection and I call you my little romantic because you come up with the most sappy lines to show your affection and I love it!

Like all kids you age you have an active imagination and love to tell stories. You like to talk about when you were a grown up and I was little you took care of me. You also love to talk about made up memories from when you were a "tiny baby". The other day you told your Nana that you had a pet squirrel when you were younger and you went into great detail about this supposed pet from what it ate to where it slept. You also apparently had a run in with an alligator when you were a baby which doesn't say much for my parenting skills.

I am always saying every age is my favorite, but I absolutely love the relationship you and I have developed and continue to develop as you get older. You feel like my partner in crime and I feel thankful every single day that I was lucky enough to be your mom.


Monday, October 26, 2015

Leaving Your Child for a Hospital Stay

Ask a CF patient how CF effects their life you will quickly realize that CF effects every single aspect of their lives, including their family. In Kaylee's short life of 3 years I have been in the hospital 3 times. I know many CFers leave their children much more often or for longer periods of time, but I thought I would share my experience of being hospitalized with a small child at home.

My first hospital stay as a mother was when Kaylee was around 1 1/2. This was my longest stay (seven days) and was the most soul crushing experience I have had as a mother. My husband worked a lot when she was younger and I had never been away from her so I was worried how she would adjust to a whole new routine and one that did not include her mother.  I spent most of my stay worried about her, wondering how she was coping, and longing to be with her. She was too young to talk on the phone, visits were hard on her because hospitals are boring, and I had trouble feeling like I was connecting to her. The hardest aspect was that despite trying to simplify what was happening to explain it to her, it was beyond her scope of understanding. I remember thinking that a hospital stay could not get any worse than that particular stay and in most aspects I still agree with that thought.

This most recent hospital stay (8 days) was difficult on the whole family, of course. However, as Kaylee gets older and can understand and process better it is a little less traumatic for everyone involved. She is still too young to realize that most people do not have to go to the hospital and has no idea how serious Cystic Fibrosis is so those extra concerns and worry are both something I have to really tackle yet. She was able to visit everyday and had fun coloring, eating all the good hospital food, and watching too much TV. We spent most of the afternoon together and although saying goodbye was hard, we still got a lot of quality time together. Past hospital stays were hard because she got restless and bored so visits were uncomfortable for all of us. We wanted to be together, but the setting just didn't make sense for such a little kid.

As Kaylee has gotten older sleeping over at her Nana and Papa's house is seen as the ultimate weekend. She was able to sleepover with Nana and Papa a few times while I was inpatient which made the stay so much easier on her (and me). With her grandparents she doesn't feel like she is away from mommy who is in the hospital, but rather having the best sleepover ever. As she gets older I can see this being our saving grace again and again.

I am not going to pretend an 8 day hospital stay is easy on a toddler or her parents. It is hard! So hard! There were tears on all ends and when it was time for her to go home it felt traumatic for her (which was traumatic for me... mom guilt!!), but we were able to stay connected and find fun and laughs in the hospital too. 

Friday, October 23, 2015

Hospital Schedule

I often have family and friends ask what I do in the hospital all day. People often don't realize how busy CFers are when they are in the hospital. Treatments come every 4 hours around the clock and can take 30-40 minutes to administer. Add strange medication schedules, early morning blood draws, staff coming in almost every hour, and we often go home feeling sleep deprived!

6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.

Saturday, September 19, 2015

Rain Showers and Orkambi

"Maybe we will see a rainbow" my 3 year old shouted with eyes wide at the thought.
My dad and I exchanged glances. While smirking I replied, "Maybe" not believing it one bit.
It hardly rains in the summer. We haven't seen rain in four months or so, but a recent drizzly day made its way into the end of summer leaving my daughter with the optimistic belief that she would see a rainbow. It was true the rain had stopped, but the sun was still hiding behind dense clouds and evening was quickly approaching. My daughter had a date with my father that evening and I was hoping the excitement from the date would be enough to make her forget the disappointment of a rainbow that would never be.

I started Orkambi today. The day I found out that Orkambi was approved, my application was accepted, and the pharmacy was preparing to ship my pills to me I was filled with a multitude of conflicting emotions. I am an optimist by nature, but a realist by life experience. My heart kept shouting, "This is a dream come true! Your body will be functioning more normally than it ever has before. This is what you have been waiting for" But my brain kept shouting just as loudly, "But the benefits are minimal and your lung function is already so low." My heart would rebuttal, "Improvement is not the point, stability is what matters. " The fight between my jubilant heart and my practical cautious mind roared on throughout the week

This morning I woke excited and anxious for the postal carrier. And once the meds were in my hand around 9am I suddenly felt nervous in a way I haven't felt in so long. This was the moment of truth. All the potential benefits and all the potential let downs were running through my mind. I wanted so badly to let my optimism take over my cautious mind, but I was equally concerned about being disappointed. I sat there for a long time before swallowing my first pill. It is okay to hope for the best, I kept telling myself. It is okay to be optimistic for once and believe that good things, no matter how small, are coming your way.

I could hear the giggles and high pitched voice of my little girl running up the front steps. I greeted both her and my dad at the door with a big smile. Before I could even ask how the date night went my daughter, hardly able to contain her excitement shouted, "We saw a rainbow, mommy! We really did!"

Sunday, September 13, 2015

Forgetting Enzymes

CFers take enzymes every time food passes our lips. It is so engrained in our daily routine that we often take them without much thought. It is so routine that there are times we may wonder, "wait, did I take my enzymes already?" It happens to me more often now that I have a little one that distracts me during meal time, but let's be real, it happened often enough before kids. Recently, my dad found the perfect solution to this annoying problem at the local pharmacy.


His great find is a lid that goes on regular prescription bottles (the translucent orange kind) and keeps track of how much time has passed since the bottle was opened. So let's say you ate breakfast at 7am and you sit down for a snack at 10am, but you can't remember if you already took your enzymes. You can take a peak at the lid and if the bottle says 3 hours have passed since you opened it you know you better get swallowing. And if it says 1 minute, you are good (as long as you didn't accidentally place your napkin on top of your pile of enzymes by accident not that I have ever done this ehem).

The downside is they don't fit on the plastic Zenpep bottles, but if you have CF you probably have a few extra orange bottles on hand (or will once your next shipment of prescriptions arrives) that you can use. These were clearly from Rite Aid, but I assume most major pharmacies have the exact same product. Hopefully this will answer the age old CF question of, "Wait, did anyone see me take my enzymes?"

Wednesday, August 19, 2015

A Green Tomorrow

To plant a garden is to believe in tomorrow.
- Audrey Hepburn

I started my first vegetable garden 5 years ago, in pots that were much too small, outside my apartment's front door in a much too shady and busy walkway. Throughout the day I would move the pots holding my precious tomatoes and peppers to wherever the sun was filtering through the branches of an overgrown pine tree. It was the worst conceivable place to grow a garden, but that little potted garden that gave me a total of three tomatoes and two stunted bell peppers ignited a passion in my soul that I have never been able to shake.

Today, the first sight you will lay your eyes on when you go in my backyard is a large display of raised beds that is home to everything from asparagus to watermelon. My mornings and evening are spent tending to my garden and my kitchen is home to the rewards these plants offer in return for my care and attention. It seems at times my daughter was raised in the vegetable garden and the age of two can rattle off facts about garlic scapes, and the importance of ladybugs, and that melons have both female and male flowers.

I always found it funny that so much of my life is avoiding thoughts of the future, a future that statistics and doctors assure me won't be long. Yet, I spend my time on a hobby, a passion, an obsession that is all about forward thinking and constant planning for the future. The seeds I so careful sow in the ground in spring comes with so much hope of thick green vines heavy with melons that will fill my stomach and soul mid summer. I cover my strawberries today to protect them from tomorrows ravishing birds. Asparagus is planted with the hope that in three years time I will have spears to grace my dinner table.

If you ask me about the future of my garden you will grow bored and restless long before I stop chattering on about expansion, and artichokes, and aphids. If you ask my about my future, the future of my health and my life you will be greeted with a harrowing silence. You will see an empty vastness in my eyes so foreign in a woman still in the prime of her adulthood.

The garden is a way to plan for the future and put my hopes and dreams into a tomorrow that feels so uncertain. Somehow it feels safer to make plans for my plants than for myself. If I never get the harvest of cherries it is much less heartbreaking than never seeing my daughter get ready for prom.

So for now I carefully tuck seeds into the soil so that in two months from now the ground will be stuffed with plump carrots. And as for what lies in the future? The carrots are all I can be certain of.

Wednesday, August 12, 2015

Clean and Care Free

You know that feeling you get after filling your gas tank? The relief when that little voice that keeps nagging, "your tank is getting low" and "don't forget you need to fill your tank soon" is finally quiet? That voice that you didn't even consciously know was bothering you until it is finally gone?

Yeah, I get that same freeing relief times ten when I know all of my nebs are clean and dry!

Saturday, July 25, 2015

Orkambi Troubles

I am not sure how one quantifies the value of a life. Apparently, some people know the secret equation, but I wasn't lucky enough to be one of them. Although, I do not know exactly what my life's value is I do know according to my insurance company my life is not worth $259,000/year. In other words, my insurance is not covering the new drug Orkambi for any of their Cystic Fibrosis sufferers.

I was actually really surprised, naïve as it was, because my insurance gladly covers the $300,000/year Kalydeco for patients with the correct mutation. I thought that if they would pay a higher dollar amount for one groups of CFers they would pay for a less expensive version for another. We all know life isn't fair and insurance companies rarely make sense so I guess thinking my insurance would cover this medication was faulty logic.

The really horrendous part of it is I am not sure I will be eligible for the Vertex patient assistance program for people who have insurance refusing to cover the cost of the drug. This could mean that unless I magically become extraordinary wealthy, an extra $20,000 a month wealthy, I may never have access to this medication.

The only aspect of this whole situation that is giving me hope is that CF doctors in my state are coming together to fight for their patients so that we can all access this medication. The CF community is full of doctors who genuinely care for their patients and for that we are lucky. The only other fiber of hope I have is that potentially my insurance company is negotiating price and may eventually strike a deal with Vertex. The part that is the most frustrating is that I am being left in the dark. The morning after I found out my insurance is refusing to cover Orkambi through another cyster I called my insurance company, my clinic (the CF nurse is on vacation), my pharmacy and vertex. I got zero response and no answers. Now that it is the weekend I have to wait until Monday to hope that someone will answer their phone to provide me with some answers on where we go from here.

Cystic fibrosis patients wake up every morning from the moment they are born until they die ready to fight. It is the only way to ensure we wake up every single day. I am ready to fight my insurance in any way possible, my life is on the line!

Saturday, July 18, 2015


There is a flurry of emotions whirling through my mind. I feel as if I am teeter tottering between every emotion that a human can possible feel throughout each and every day. Why all this emotional instability? The newest Vertex drug, Orkambi, is the culprit of all this emotional confusion.

The two years of utter free falling into a dark abyss from this disease made me wish with every fiber of my being for Orkambi to be approved. Every wish my heart held so dearly revolved around something, anything that could pull me up, even just a little, from this bottomless well. Now that Orakmbi is here I feel such a mix of emotions I feel I may go crazy with uncertainty.

The optimistic side of me is feeling excitement so strongly that I can feel it buzzing in my bones. The optimistic side of me wants to scream and shout and jump up and down that there is something, anything that may help me maintain the last 5 months of stability for the next several years. The optimistic side of me want to believe that this drug will work well for me and I will gain 4% lung function or more! I want to have more energy to chase and swim and bike with my daughter. I want to gain weight easily, and have fewer aches, and have more stability in my day to day life when it comes to health.

And then a voice, just as loud and adamant as my optimistic voice, comes bursting into my mind. The voice is my realistic (pessimistic?) side and it is reminding me that not ALL people experienced increased lung function and there were a few that experienced side effects that required them to stop the medication (mainly elevated liver levels). Some felt nothing and others had symptoms that were troublesome and even a bit scary like extreme shortness of breath.

To add icing to my troublesome cake I feel paralyzed with fear that my insurance, which has been reviewing my case for over a week now, will deny my ability to even try this medication.

So much of life with Cystic Fibrosis is luck. What mutations you have, how the disease presents itself, what bugs you catch and how much havoc they wreak on your body, how well you respond to meds and if you are allergic to them. Here is just another example of luck. I have heard this drug has been a life saving miracle for some people and for others it is a nuisance not worth their time. How I feel about this medication is anyone's guess and sheer luck just as most things with CF. And of course, luck will determine if my insurance will even cover this $259,000 a year medication.

I just hope that this time, lady luck is on my side!

Friday, June 19, 2015

Toddler Talk Part 7

" I like to put boogers on the fence by my bed (bed railing)". To my horror I ran to her bed (the crib converted to toddler bed type) and found a booger carefully placed behind each post on her bed railing.

"Can you buy me all these books because I am obsessed with bears." Since when did she say obsessed?

In a busy public restroom, "Did you remember to wipe?
"Yes, I did."
"Oh because I thought maybe you didn't because you just had a PENIS" Because seriously the only time she talks about genitalia is in public.

She cried when I started talking up her third birthday. She didn't want to be three. I thought the idea would grow on her, but a week later she is adamant she is still two.

She believes being three means you are a grown up which makes the paragraph above make a little more sense.

"Okay today we are going to..." before she does any art project. I guess the teacher in me rubbed off on her a touch.

Thursday, June 18, 2015

Never Growing Old

My husband and I went away for several days without the little one. There is something so renewing so refreshing about skipping town with the man you chose to marry all those years ago. The man who made a younger version of yourself nervous and giggly, but now makes you feel safe and content.. The man who in the past would make your face light up when you would talk about his warm eyes, strong arms, and addictive smile, but now fills your heart with a sense of home and belonging as you talk to your friends about the adventures the two of you, husband and wife, have recently experienced. The man that would make your heart flutter and your palms sweat when you saw his name on your caller ID, but is now the very first person you want to call with news, both good and bad.

After three years of parenting together it was nice to be able to focus on just the two of us for more than an overnight here and there. We spent our days hiking through the forest and our evenings laying in the warm sand listening to the ocean waves crash near our feet. We got tipsy at lunch and ran while bursting into fits of giggles because we almost missed our steam train ride back to the hotel. We had good wine, the freshest seafood, and amazing conversation.

The last evening after several days of rekindling the zest for our love that was ignited so many years before, we sat down to a romantic Italian dinner. As we were discussing what our evening plans entailed an elderly man was seated at a table across from us. He had trouble lowering his tired old body into the seat and his hands were shaky as he reached for the menu. He pulled out a magnifying glass to look at the menu and carefully sipped his wine while waiting to eat. My husband kept glancing at the man and would whisper, "that makes me so sad." Although, the man dining alone filled my heart with a sad loneliness as well I was surprised at how fixated my husband was on this gentlemen. As we finished out own meal the elderly man had finished his and left. My husband, now safe to speak freely, looked at me and so quietly so heartbreakingly in a voice barely above a whisper said, "That will be me someday." I instantly had clarity as to why my husband was so transfixed by this older man dining alone. I quickly felt my heart shatter with sadness for the man I love so very much because we both knew that realistically CF will take me long before either of us sees old age. I was reminded again how heartbreaking this disease is and that even though we live each day as if life were normal there is always the looming knowledge, the heavy sadness that this disease is killing me and leaves me little chance of ever growing old with my husband. It reminded me how angry I was at this disease for what it does to me, how it destroys my body and my life, but most of all that it takes all those who I love the most in the world and drags them down with it.

We had a moment of understanding and acknowledgment of how this disease can break our hearts and then in true fashion to my husband he followed it quickly with, "at least I won't have to argue with anyone about what kind of wine to order." And just like that we pushed the fear behind us and moved in with life because we know our days are numbered and our moments precious so we can't dwell in the what ifs and sadness.

Friday, June 12, 2015

3 Years Old

My Sweet Baby Girl,
You are three years old today! Although when people ask how old you are you are adamant you're still two. You have grown fond of being two and it may take a while to accept the fact that you are officially three, but that is okay you have a whole year to get used to the idea.

When I look back over the years I am amazed at how much has changed, but I am even more amazed at how much has stayed the same. So much of who you were as an infant is still exactly who you are as a toddler.

You still are extremely expressive and it is almost impossible to get a picture of you without some strange or goofy expression. When you were an infant I was envious of all my friend's who had sweet smiling pictures of their sweet babies when all of my pictures of you were with a furrowed brow, or a shocked expression, mouth agape. Now as a three year old your expressions are just as wacky, but I no longer long for sweet smiling pics because baby girl you have too much personality to contain and it shows with those wild pictures.

You have always been an artistic spirit even from a very young age. The arts move your soul and fill you with joy. I have set up an art station in our home where you frequent up to a dozen times a day. You spent the majority of the day coloring, drawing, cutting with your kid scissors. I have never seen a child so passionate about being creative. When we blew up balloons for your party you asked if you could draw on them to make them more special, when you are in the bath you spend your time with bath crayons coloring the walls, outside you spend most of your time drawing with chalk. You even started bringing a notepad and colored pencils in the car so you can draw while I drive. All the practice has made for some pretty impressive art and a huge mess in my house! Oh, but to watch you create brings me as much joy as it brings you to be the one creating and so I don't mind the mess and I love the creations.

You were an early and constant talker. The amount of talking has only increased and it is rarely quiet in our home. You always have something to say and you often get mistaken for much older because of your ability to talk, and talk, and talk! Your understanding of Spanish is continuing to develop, but at a much slower pace than English. You understand everything that your daddy and some of our Spanish speaking friends say, but you still prefer to answer in English or Spanglish.

When you were a baby I often felt sadness when I thought of the days passing and you growing older. I wanted to keep you as my little baby snuggled in my arms forever. But as you grow older I get more excited for the future seeing glimpses who you will become. Our mommy daughter dates are full of conversation across the dinner table (although that of a three year old variety) and we are starting to have many of the same interests which makes for such a beautiful relationship. I like to think that we will grow closer and closer as we both age and that our mother daughter relationship will someday be that of two best friends, drinking coffee in the early evenings, eating brunch on Sunday mornings, chatting on the phone and enjoying all the beauty life has to offer with one another.

Our future looks bright together, kiddo.

Tuesday, June 9, 2015

Public Pool Humiliation Again Again

Yes, I used again twice in my title. Yes, I know that doesn't make a whole lot of sense, but I never claimed to be a real writer and it is the internet... they let anyone post anything. There are no rules.

My favorite exercise over the years has always been swimming. Yes, I have dabbled in other forms of exercise like jogging and zumba, but I always find my way back to swimming because we have history together. And as the title implies our history has not always been drama free. In fact, nowhere else in my entire life have I experienced humiliation like I have at a swimming pool. And although it has been years since I had an episode such as explosions of mucus or a nip slip complete flashing fiasco I have once again found myself humiliated while donning a bathing suit.

This evening when I arrived at my gym I frantically shoved my belongings into the locker slammed it shut, programmed my locker with my secret code and half walked/ran to the pool. I have this irrational fear that if I don't get to the pool as quickly as possible after arriving at the gym someone will take the last lane and I will have to wait for someone to leave so I can workout. It makes no logical sense, but there you have it.

So I have a decent workout and go to redeem my items from my locker. I punch in my lock code and nothing happens. Oops, wrong locker. I try a a different locker, nothing. I decide to shower and try again afterwards, as if that would change something. To my surprise it did change something. Instead of desperately trying to open my locker in a bathing suit I was now trying to open my locker while holding a towel around my naked self. And as I try over and over again the locker room starts to fill up with women getting changed for water aerobics. The more time I take trying to open this locker the more women start pouring in. Realizing it was a futile task I ask a woman to go to the counter and find someone to help me.

The gym employee comes in and asks for my secret code and starts punching the code in the keypad. I have been at the gym for over a year so I am pretty confident I know how to punch numbers on a keypad, but who was I, naked and cold, to judge. She then starts questioning me, "are you sure this is your locker?", "Are you sure it was on this wall?", Are you sure it was on the top row?" At this point I don't know anything anymore except that my naked confused self is providing a lot of entertainment to the other naked women in the locker room.

Finally, after I promised ten times and swore up and down that locker 122 was indeed the locker that contained my clothes (even though I had NO clue if that was true) she punched in her master code and opened the locker. Low and behold, it was my locker. Half the women cheered, it was that big of a deal. A couple murmured that was their worst fear, and eventually everyone left to their class.

And so now I have learned several lessons over the years: Don't try to retrieve mucus out of a pool, frumpy bathing suits are the way to go, and pay attention when locking up your belongings.

Wednesday, June 3, 2015


As most of the CF world is probably aware of by now, the vertex drug developed for DDF508 has a good chance of becoming available to patients this July. Everyone in the CF community was hopeful this drug targeting DDF508 would be a life changing miracle drug just like Kalydeco was for people with the G551D mutation. Unfortunately, the results of the study quickly dashed many of our dreams that this drug would be our miracle drug.

As much as I am disappointed that Orkambi, which will work on my mutation, is not the life changing and life extending drug that Kalydeco is for a select few with CF. I can say I am beyond excited, despite having all the facts, that we may have another medication that could potentially help slow the progression of my disease. When you live with a progressive disease new treatments are never developed fast enough. In fact, discoveries to treat CF are far and few between. And even when therapies are developed I have found myself allergic and unable to take advantage of many of these medications and treatments. The progression of the disease is always three steps ahead of the treatment and watching your lungs and body deteriorate is heartbreaking at best. It development of treatments are very much a matter life or death for so many with CF. This is why I have to roll my eyes at the naysayers that complain about the humble 3% increase in lung function that were seen in the Orkambi study.

What the naysayers don't realize is that 3% may not seem clinically significant, the truth is that the drug is so much more than 3% increase (on average) in lung function. It is the fact that is can slow the guaranteed progression of this disease. That is something that can not be taken lightly. To me, it  means I may have a few more years added to the end of my life to watch my daughter turn into a woman. It may mean one or two more anniversaries I spend with my husband. It may mean another birthday and a few more grey hairs. So yes, 3% may not seem like a big deal to someone who hasn't had an expiration date stamped to their lungs. It may not seem like 3% could change a life, but pessimists are stuck on a low percentage and not the potential for what slowing, even minutely, can do to a life. How a few years can mean so much to a mother, a wife, a sister, a friend who would do anything to hold on to their life for just a little longer.

So yes, lets celebrate the accomplishment of the researchers, the foundation, the  CF community that we may (as long as the FDA gives the okay this July) have one more tool in our fight again CF, we may have a little more hope for tomorrow, and we may have a little more time on this Earth.

Sunday, May 31, 2015


Spring has arrived gently this year. The heat of May never showed its face and we have been soaking up the cool days and even cooler nights. This spring weather in combination with my behaving lungs has brought a constant flurry of activities. It has been a welcomed change to the hibernation and sickness that winter brought and I feel I emerged this spring as a new person.

Rather than finding comfort and therapy through the keys on my laptop posting to this blog, I am finding therapy in the days I spend splashing in the river with Kaylee, conversation with friends and neighbors, long walks and bike rides, feeding the baby ducks along the canal, and spending entire days tending to the garden.

I am finding my peace watching Kaylee pick handfuls of beans and a fist full of carrots only to flop down in our strawberry patch and have a breakfast straight from the Earth.

I am finding my healing in the mornings that I don't wake up coughing, the laps I can swim at the gym pool, and the roundness of my belly that only comes when my health is doing well.

I am thankful every single day that I wake and feel well, feel like myself, the self I should be. Not the self stifled by this debilitating disease. I know, after 31 years with this disease, that hard days are around the corner, my lungs will struggle to get my through the day, and the hospital will be my temporary home once again, but until then I am basking in the warmth of the sun, fresh air, and health that this beautiful spring has brought along with it.

Saturday, May 2, 2015

Guest Blogger- Anika

It has been a while since I have been able to say this so I am extra excited to introduce another mom-to-be with Cystic Fibrosis. Anika is 26 year old and author of the blog, Faux Islander. She is more than half way through her pregnancy at 24 weeks!
Everyone that has CF seems to have a very different experience. Share a little about your CF story or how CF effects you.

At six months of age I was diagnosed with cystic fibrosis as I was not gaining weight or thriving as normal babies should. Other than not being able to digest food without taking enzymes, the CF didn’t start to affect me, well my lungs in particular, until I was 22 years old. I started getting reoccurring chest infections and had to be hospitalized for the first time with IV antibiotics at 24 years of age. As my lungs have always been healthy, it’s a bit scary for me now as I get older to see them deteriorate so quickly but I am very diligent in exercising and doing my nebulizers which helps to keep them infection-free. Regardless of the hospital admissions and lower FEV’s, I am very blessed to be as healthy as I am with CF; it is something I do not take for granted.

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.

 Having kids and a family is something both my husband and I wanted, it was just the timing we were unsure of as we are newly married and didn’t know if we should work for a few years and then ttc or just go for it! In the end, we decided to just stop using protection and see what happened as I wasn’t even sure if pregnancy was possible for me due to my CF. It was definitely a surprise when, one month later, we found ourselves on the road to parenthood with a positive pregnancy test.  

What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?

Wondering how my lungs are going to cope is definitely the biggest fear I had, and still have with my pregnancy. I wasn’t sure if getting pregnant would cause my lungs to deteriorate faster and thus leave me worse off afterwards but the doctors and my CF team have told me there is no evidence to believe that getting pregnant takes years off your life in regards to the strain it puts on the lungs etc. I found this very reassuring and was thankful they addressed that fear because my lungs have suffered more infections during pregnancy than what is normal for me and it is easier to cope knowing that exacerbations during pregnancy are normal and will (hopefully) only be temporary. I am 24 weeks and have had IV antibiotics twice as, both times, I got sick with a normal cold and couldn’t get the infections cleared solely with oral antibiotics. I am very diligent in exercising and doing my nebulizer (hypertonic saline) with the hopes that I can prevent more exacerbations, or at least extend the times between them.

How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?

The biggest challenge for me has been trying to avoid getting sick. Ironically, the actual pregnancy itself has been such a pleasant experience; I’ve had no morning sickness, no nausea, no heartburn, and no food cravings or aversions. Sure I slept a bit more in the first trimester and I have the occasional ligament pain as the uterus expands but from some of the stories my friends have told me of their pregnancy experiences, I know mine has been a cake walk in comparison.

How do you feel your pregnancy is different that a non-cf pregnancy?

 I think the biggest difference (as best as I can theorize) is that moms without CF don’t have to worry as much about their own health; their stress and anxiety is aimed mostly towards the well-being of baby where as a mom with CF is hyper-aware of every little difference she feels in her lungs (or body in general) as it is hard to know if it’s just a normal pregnancy symptom or a CF symptom which needs to be dealt with.

What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?

 Anticipating my need for more frequent IV antibiotics, my CF doctor inserted a PICC line in my left arm which will stay in until after I deliver as it allows for quick and easy administration of the meds. Having the PICC has actually been such a blessing by taking away a lot of my stress because I know that if the need arises for IV antibiotics, I can basically get them started instantly which is vital to managing lung infections; the sooner the treatment is started the better the results.

What are some of your concerns about mothering and CF?

Initially, I am quite concerned about the first few months of motherhood as the needs of the baby are in high demand which means little sleep for me and, inevitably, result in a weaker immune system to fight off colds. Once the baby sleeps through the night I am anticipating and hoping things will then stabilize and I can just carry on carrying on.
I do think about the future and the scary thought of leaving behind a young family if I die earlier than later but not doing things in life (like not having kids) because of fear or because of my CF is not the way my husband and I have chosen to live our lives. No one can know what the future will bring, so just be thankful for every day the Lord gives you…… and live!  

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?

 I would say, don’t lose heart or get swallowed up with fear if you are constantly finding yourself fighting off chest infections; frequent exacerbations are normal as making a baby puts huge demands on the body causing even perfectly healthy women to suffer more. Also, try and make sure you have supportive people in your life to encourage you and help you. My husband has done an absolutely amazing job at calming my fears and remaining positive when I hit some of those lows; he is my constant companion and helps out in any way he can. My family has also been a huge support and I am comforted to know they are here to help once when the baby finally arrives.
Pregnancy is hard on the body so take the time to care for yourself, whatever that may be.  

**Anika gave birth to a healthy baby boy July 25, 2015 at 36 weeks gestation. He was 5lbs 15oz ***

To read the stories of other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)


Wednesday, April 29, 2015

Two Months Since Zosyn

It has been two full months since I had my port deaccessed and stopped IV antibiotics. Two full months of feeling like myself. Two full fever free, ache free, sick free months. The people at the gym know me by name and the pool feels a little like my second home. This is the longest I have felt "normal (like CFers ever feel normal) in a really long time. I know better than to get my hopes up, but for now I am enjoying the old me once again!

Wednesday, April 22, 2015

Toddler Talk Part 6

Language development has been by far my absolute favorite part of watching my daughter grow up. The most fascinating and comical aspect of language development of an almost three year old is how one moment she can use words that seem far beyond her years only to completely botch the very next word that comes out of her mouth. So despite the correct use of words like disgusted, delightful, and homesick she also says the following not so correct sentences/words on a regular basis:

1. "Yummy to my chum chum chummy!"

2. She calls an oven mit a "hand bra"

2. Wrinkly fingers from the bath she calls "crumbly fingers"

3. Excuse me is said, "scoo scream"

4. Whenever she cries and her eyes are full of tears she calls them "blubbly" (like bubble with an extra l)

5. When I got home from the hospital, but was still on IVs we watched the Daniel Tiger where his mom is sick a lot. In the episode Daniel Tiger sings a song, "when you are sick rest is best." Kaylee still loves to sing, "When you're sick rest is rest" which seems a little redundant, but who am I to judge?

Wednesday, April 15, 2015

Allergic To Life

As a teen my dad would always bring me to my CF appointments with a pen and notebook in hand. He would scribble everything the doctor said and keep track of all my stats from the appointment in that notebook much to my horror. "Dad, you don't need to take notes. This isn't school," I would plead, but my scientist father paid no mind to me and kept those books until I started going to appointments alone. And although the notebook was not my style I learned the value of keeping track of my health and trends over the years. So I started a calendar (visual learner much?) and kept track of my PFTs, O2, clinic appointments, and took careful notes of everything important that took place during my appointments on the calendar.

So when April rolled around, only 6 weeks after IVs, and my lungs felt like they completely closed shop leaving me gasping for air I turned to my 2014 calendar. I was wondering how I felt last April when I was only a few months out of the hospital. Sure enough April was my worst month last year. I wrote that although I didn't FEEL sick I was tight! So tight that my lung function plummeted and I was using my inhaler up to seven times a day. There were nights I woke as if I were suffocating and puffed my inhaler until I felt well enough to sleep again.

Exactly a year later the symptoms were the same! I felt so tight my inhaler was glued to my side and I found myself gasping for air as if I were drowning at the smallest of tasks, but besides being short of breath I didn't feel that bad. After April my health improved a lot which led me to believe allergies may have been the culprit. I went out and bought a new allergy pill (to add to my year round Singulair) and within 24 hours I felt a huge improvement. My 7 puffs of Combivent a day was reduced to three or four and my PFTs continued to climb over the next few days. I am still not at baseline, but I am significantly higher than I was before switching allergy pills. It also confirmed that even though my 14 year old self was ashamed of my nerdy dad taking notes as if he were in a lecture hall rather than a tiny clinic room he really knew what he was doing. Sometimes you have to admit that your parents really were right all along!

Sunday, April 12, 2015

Quality Control

I got my first vest at the age of 14. That obnoxiously large Vest shook my chest walls throughout my teens and followed me to multiple dorm rooms, apartments, and even saw the first few years of my marriage. At 28 I finally got an upgraded Vest, not because it was broken (although the timer no longer worked and the peddle sometimes needed a little encouragement to get the thing to start), but because my insurance finally approved it. The new Vest came when I was heavily pregnant, but even with a Vest that couldn't be fully snapped, I was delighted with the much smaller, lighter and programmable Vest.

And then within two years it broke. Just stopped working. So I got a new one. This time with locking hoses (!!!) so that less time was spent popping tubing back into the machine. Although the tubes did wiggle their way out of the machine from time to time I was still excited to get an upgraded version that would make my Vesting experience more enjoyable... enjoyable as sitting in a Vest that violently shakes your chest for 30 minutes can be.

And then with only 200 hours clocked on the machine the new and improved locking hose broke. A little over 6 months and the tube is completely useless. As I wrote "call the Vest company" on my Monday to-do list I couldn't help but think about the old, loud, HEAVY vest that lasted 14 years without a problem which seems to be 12-13 years longer than I can get the newer model to last!

Tuesday, March 24, 2015

Bulk Up Coffee Lovers Recipe

There is this new fad among coffee drinkers. I heard about it several months ago when my dietitian told me about this buttered coffee fad. Another patient had mentioned it to her and she proceeded to mention it to me. Just as I was intrigued but ultimately confused, so was my dietitian. She wasn't sure the recipe or how it even worked, but she knew you blended butter into your coffee. Yes, you read that correctly, butter in coffee! You can imagine why we were both a little confused.

Now the recipe I am sharing is not this buttered coffee, but you can find it on many food blogs including Pioneer Woman's blog under crazy coffee. I tried it myself because butter, oil, coffee and a blender is something I just couldn't NOT try because it is just so weird. My first sip all I could muster was a perplexed, "huh?" As I sipped the last few drops in my mug I was still a little confused by what I was tasting. I still wasn't sure I liked it, but I didn't dislike it. So here is my own new and improved version of this butter-free buttered coffee:

Bulk Up Coffee
8oz fresh brewed coffee
2 T Coconut Oil
2T Half and Half
Put all ingredients and any sweetener you may use in a blender (or if your blender is broken like mine a food processor works, too. Hey, sometimes you have to get creative)
Blend till coffee looks frothy.
*If you like your coffee HOT then you may need to stick it in the microwave for a few seconds.
**Coconut oil will solidify when cold so putting this coffee over ice isn't an option.

The best part?
Total fat: 34g fat
Total Calories: 200
Add that to your regular high fat/high cal breakfast and your are starting your day off right!

Sunday, March 22, 2015

Toddler Talk Part 5

K got in a fake fight with her rear end the other day. Her rear really wanted a turn painting, but she kept insisting that only people paint and behinds can not. The fight went on for several minutes where they were arguing back and forth. Eventually, K won the fight against her rear end and he..err..she... err, the rear end never got a chance to paint.

Along the lines of talking body, after telling her she needed to listen to her body referring to when she is full or needing to go potty she decided to take it somewhat literally. She now makes her tummy talk on a regular basis and then responds to their needs.
"Mom, my tummy is hungry." Using a high pitched voice as her tummy, "I really need a snack. I am so hungry." Or "My tummy is so thirsty it needs water."
Her other body parts talk too which makes for a lot of high pitched squeaky voices in our house since apparently all her body parts have the same high pitched voice. Recently her brain started talking too.

I called K a wild woman because she was wildly dancing around the living room. She stopped and laughed saying, "MOMMY! I am not a woman I am a girl. DADDY is a woman!" (She also calls me "daddy's husband" She gets really confused about these labels).

Kaylee was coloring with her favorite marker, green, for an unusually long amount of time. I went to check on her and noticed her mouth was green.
Me "Kay, why is your mouth green?"
K: nonchalantly, "Oh, I just tasted my marker"
Me "Kay, markers are not for eating"
K: Annoyed I would be dumb enough to think she tried to eat a marker, "I didn't eat it. I just sucked it a little"

One of Kaylee's friends just became a big brother. It was the first set of friends who became a big sibling (many followed immediately after). After a playdate with her friend Hayden and baby sister, Lila, Kaylee was beyond confused about the family dynamics. She just couldn't comprehend how there could be two children in a family. She finally decided her 2.5 year old friend must have been Brittney's (the mother's) husband and Lila was the child. As much as I tried to explain otherwise she wouldn't have it any other way.

Thursday, March 12, 2015

Two and three quarters

Dear Kaylee,
After the age of two I stopped your monthly updates. You are still changing everyday, but in ways much more subtle than taking your first steps or first words. Although, your accomplishments may not seem as spectacular on paper as when you were experiencing firsts I find that each month I am loving the child you are becoming and am in awe as you transform in front of my eyes.

We are knee deep in the terrible twos, but honestly kid if others consider this age terrible they are focusing on all the wrong aspects. Sure, you can be strong willed, bossy(!!!!), and you can negotiate like a beast, but oh those are the things that are helping you grow into the strong, beautiful woman I know you will be. I like this age the very best (I think I say this every month).

So what has changed in the few months since you were two and a half? Lot, babe, lots! You have a profound love for the color green, profound! Your green crayons are down to little nubs, your green markers are running dry. There is no color in this world that brings you more joy than the color green.

You have always been extremely affectionate and that continues to grow right along with you. You cover me with kisses, Snuggle me to my hearts content, and tell me, "You are my favorite in the whole wide world!". My favorite though, is when you squeeze my arm or leg and you clench your teeth so hard and growl, "I JUST love you!" That is my favrotie because I know that feeling, I feel it towards you! The feeling of I love you so-much-I-could-squeeze-you-so-tight-that-it-would-squish-you-but-I must-show-a-little-self-constraint-because-I-love-you-so-much-I-would-ever-hurt-you-kinda-love.

The most profound change though is your desire to be independent from me. Yes, you have been growing a little more independent from me from the day you were born. The last year has brought such rapid changes towards independence that I should have seen this coming, but I didn't. You like to play alone, in your room, with your door closed. You pulp the toys off your shelf and play in the middle of the room completely alone. Those same toys you used to pull into the living room to play within a few feet of me. Little one, I know this is a good thing. I know this means you are confident and secure and growing into the little girl you are supposed to be, but I can't deny that my heart breaks just a tiny each time you close that door and block me away from your imaginary world that belongs to only you. I feel a little pang of sadness that you don't need the comfort of my presence throughout the day. Oh, but I wouldn't change a thing!

Tuesday, March 10, 2015

This Skin

A few days ago I explained the process of getting desensitized to IV antibiotics. While in the hospital I had heart monitors connected to my chest 24/7. If you have followed my blog at all you know I have very sensitive skin when it comes to adhesives. So it should come as no surprise the heart monitors (all 5 of them) gave me these nasty blistering welts. The picture to the right is of my lower rib cage after I removed the monitors. The blisters are hard to see, but they quickly developed and boy were they itchy! I have been home from the hospital for almost a month now and you can still see where all my monitors were by faint little red circles dotting my torso.

And as if that wasn't bad enough check out the little red bumps on my arm (they are subtle and easier to see towards the underside of my arm in the pic) where the blood pressure cuff was for the entire three days. The blood pressure cuff!!! No tape, no adhesive, nothing!! I think the combination of the cuff being on the same part of my arm that my old PICC lines were placed didn't help because that skin has become insanely sensitive since my bad PICC experiences. Although this rash faded within a few days I was confused as to how I could possibly react to a blood pressure cuff!

I still find it perplexing that outside of CF medical experiences my skin is not sensitive at all. I have never had a reaction to detergent, soap, lotions, anything! I have normal skin, but the second I have some sort of medical tape, adhesive or a constant blood pressure cuff on my skin it starts reacting.

Wednesday, March 4, 2015

Antibiotic Desensitization

I wanted to describe the process of desensitization because before my last admission I was pretty clueless about. It was actually much easier than I anticipated, it but was something I was very nervous about prior to actually going through the process.

This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.

When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.

A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.

The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.

Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.

Sunday, March 1, 2015

What You Do not Notice

Sometimes the best indication of how things are going is what you do not notice. Like the fact I let my daughter jump on my back yesterday and carried her all the way home from the park and I didn't notice that my lungs weren't getting tired and my breath wasn't becoming too shallow. I didn't notice that I was carrying my daughter blocks at a time until she asked, "Mommy, I am not too hard to carry today?"

I was watching my nephew and ran up the stairs to throw his diaper in the diaper genie and I didn't notice that I actually made it up the stairs without gasping for air until I was already back downstairs playing with the kids.

I walked a mile with my daughter to run some errands and stop by the local boba shop for a cool treat before making the walk back with an arm full of grocery bags. I didn't notice I never had to stop and cough until I got home and realized it was time to start my treatments.

I didn't notice I didn't need my afternoon bronchodilator until I needed my pre-treatment evening dose and couldn't remember where I had placed it earlier that morning.

Sometimes, when life rather than your disease starts occupying your mind you realize you must be doing alright!

Thursday, February 12, 2015

Awkward Hospital Moments

I finished my desensitization and am back home. I will update about the process soon, but for now I wanted to share some awkward moments in the hospital because every stay has at least a few of them!

Being in the hospital is nothing like they show on TV (redband society anyone?) however, there is some entertainment mainly in the form of awkward or embarrassing moments. Well, maybe that just happens to me. Regardless, here are a few of the entertaining or awkward moments that happened during my 3 day stay.

1. I was admitted Friday night, but they did not start the desensitization until Saturday morning. This means Friday night I did my regular treatments (at 2am...yikes) and that was it. Nothing was done at the hospital that I don't already do at home. So Saturday morning the doctor (not my CF doc) walks in and says, "Are you feeling better yet?" I laughed because...uuuh I hadn't even had a course of antibiotics yet. After laughing I realized it wasn't a joke and there he sat waiting for an answer....

2. I had two nurses ask me when I came down with CF. Granted it was not the CF floor since I was in ICU, but still genetics 101 anyone??

3. Since I was in ICU I was hooked up to a million monitors and really couldn't move. After my treatments the RT forgot to throw away my mucus spit cup and I never realized. Later when moving the table closer so I could get a sip of water the spit cup fell on the floor. Upside down. Mucus went flying everywhere. I tried my hardest to reach and I couldn't! I had to call my nurse and the poor woman had to clean it up. Not my favorite moment.

4. Bedside commode... enough said!

I find most people that work in the hospital lovely, but every once in a while you get an interesting personality. There were two awkward moments because of awkward hospital staff.

5. I had a nurse come to draw my blood. He was not my assigned nurse, but she was busy so he came in to take my blood to help out. He was pretty quiet and didn't say much until my blood draw was almost done. Then he blurted out that his mother died the week prior and then ran out of my room before I could say anything.

6. I had house keeping come through every day. They were usually respectful and quiet, but the last day I was in I had a strange experience with housekeeping. The woman came in and instantly starting ranting and raving that the school never notified her that it was a school holiday. She then went on to complain about the newsletter the teacher sends home. Uuuh inappropriate much?

Overall, the hospital experience went smoothly, but I always have a few cringe worthy moments and this stay was no exception. At least it makes for an interesting stay!

Saturday, January 31, 2015

Toddler Talk Part 4

These entries are from Sept- Oct 2014 (so K was about 2 years and 3 months. I am just a little late posting). I guess anatomy was something of interest to her at the time.

1. After grabbing a container of peanuts from her snack drawer she announced, "I want to eat PENIS!"

2. I let Kaylee sip from a can of Sprite (I actually don't usually drink soda, but we were out all day, I forgot my water bottle in the car which was about 7 blocks away, and the street vender told me he was out of water, and it was September which is HOT, so....) Kaylee sips the soda and shouts (in front off the courthouse I might add),
"I am drinking beer!!"

3. Holding her stuffed cat, "This is not a huge penis, this is a tail."

4. "When I grow up I am going to have HUGE boob boobs just like mommy." If you saw how large (or not large) my chest is you would know why this is so funny.

5. "When I grow up I am going to grow another arm and hand."

Thursday, January 29, 2015


I am on a waitlist to get into ICU. Yup, ICU as in intensive care unit. I never realized there were waitlists for such places. Makes it sound like a nice restaurant or swanky hotel despite the fact that I don't think anyone ever wants to end up in ICU. Thankfully, I am not critically sick which is why I have been waitlisted. I do however need a nice dose of IV antibiotics. After calling the doc asking for a two week tune up I learned that the bugs I culture and my body have made a pact against me. It seems the bugs wreaking havoc on my lungs are only susceptible to medications my body decided to become allergic to.

The good news is that being allergic to medication does not mean you can't take them. It simply means you need to be desensitized to the meds in an environment that you can be watched closely to ensure that there is no reaction (I think anaphylactic shock it the biggest worry) hence the ICU reservation. I was told my name was on the list and an intake coordinator would call me when a bed opened up.

Naïvely, that weekend I carried my phone everywhere I went, checking every so often in case I missed the call. Then Saturday night turned into Sunday. My hubby took Monday off in case the call came. As Monday came and went we realized this wait may be longer than anticipated. We have been waiting almost a week now with no sign of an open bed.

In the time I have been waiting I have had some orals, a week of IVs (Aztreonam) that we decided was ineffective and I have switched back to orals. I am hoping these orals do a better job of holding me over until a room opens up because I am feeling desperate for some relief.

Hopefully, in the next few days I will be updating from my hospital bed!

Tuesday, January 27, 2015


The other day I tried to return a call from a friend, but got her voice machine. Her son is the same age as Kaylee and they often have play dates. Recently, with winter here, her friend was sick for so long we had to postpone play dates for three weeks in a row and the week after out playdate he ended up in the hospital due to sickness. As I hung up the phone, disappointed my friend didn't answer, Kaylee came walking up to me.

"So mom, how is Ethan feeling today?"
I looked up from my phone not realizing she was standing there. Her big blue eyes were looking up at me eagerly waiting for my response. I was surprised she remembered he had been sick as it has been several weeks since a canceled playdate.

"He is all better. That was nice of you to ask about him"
Kaylee responded with relief in her voice, "That is very good news!"
and ran off to play.

So much of the time I worry CF will fill Kaylee's memories. That she will remember the times we spend in the doctors office, or the nights I wake her with my cough from the next room over, or the way I always decline chasing her through the park because my old lungs simply can't run anymore. Or the times she wants me to carry her and I make excuses because I hate to tell her no, but in reality my breath is too shallow and I have days I simply can't manage walking and holding her. Or the times I huff and puff at the top of the stairs, or the times I need to nap instead of being able to play, or all the horrendous moments CF has put in our lives.

But maybe after two years of motherhood and 30 with this god awful disease I have finally seen something good come from such an ugly part of life. At two, Kaylee has learned to think of others which is something many adults have not yet mastered. Maybe CF is giving her life lessons she could not possibly learn with a healthy mom. Maybe this disease will teach her first hand about empathy and thinking of others. Having CF be such a large part of her life may fill her memories with hardship, but maybe it will fill her heart with understanding. Maybe despite all the horrible aspects of CF it will teach my daughter about the more important parts of life, to connect with and understand others. Maybe a part of her will grow up grateful for the lessons she learned from CF rather than a hatred for all it took from her. And maybe I am learning more about accepting the life I have been given from my daughter than I ever imagined possible.