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.