Sunday, December 28, 2014


The last few months I wasn't able to blog much due to a rather ancient computer that tired out and left me hanging high and dry. I am back online and hopefully this computer will stick around for a while. This past year seems to have been a blur of sickness, meds, and doctor appointments. As the new year approaches I can't help, but silently hope and wish for a healthier more stable 2015. And yet, in the back of my mind I hear the words I spoke at the end of 2013, that I hoped for a healthier and more stable 2014. I have been thinking a lot, often while sitting in the doctor's waiting room, about my health and the lack of control I have over everything. How despite being compliant and aggressive with treatments my health seems to yo-yo in ways I never imagined possible.

In recent months I have seen gains I only dreamed of in the height of sickness last April and yet just as quickly as those gains come, they seem to disappear and my health tumbles to new lows. This taste of healthier days, filled with more energy, more endurance, the ability to exercise tease and taunt my very soul, "Look how wonderful it is to be able to jog on the treadmill and feel your legs tire below you and how amazing it feels to gulp that oxygen into your open lungs. Feel how liberating it is to walk all afternoon without that all too familiar feeling of drowning. Notice what it feels like to be everybody else. Now just wait, because tomorrow you will open your eyes and for no reason your lungs will burn, your breath will be shallow, you will struggle to walk to the bathroom and you will question your sanity that this amazing day with a chest full of healing oxygen and a body that seemed to function just as it should even existed."

This has replayed over and over the past several months. Making me crazy with anticipation for when my health would return and fearful of every minute that passed that I felt well knowing all too well it would disappear with a blink of an eye.

And so I am learning to be grateful despite the endless sickness, the tiredness I can't shake and the infections looming around the corner. I need to learn to be grateful or go crazy with the instability, lack of control, and constant fear. I am adjusting my expectations and learning to enjoy the good even if there seems to be so much more bad. The days I find my breath shallow and labored I remind myself to be thankful that the fevers have stayed away for weeks. On the days I can exercise well I try not to think what tomorrow will bring and enjoy that I was able to exercise at all. I try not to look into the future, but rather stay in the moment because a good morning does not guarantee a good afternoon and a healthy few days does not mean that this disease is backing off.

The chronic, never ending feeling this disease brings can be exhausting. Thinking of my future, the slow decline, what my life will be like at 35 or 40 can feel overwhelming. I can't even begin to picture myself 15 years from now. And so for now I will take it day by day, moment by moment. I would love to wish for a healthier 2015, but instead I will hope for a better perspective, a healthier outlook on life. I will always hope for healing and stability, but knowing CF is chronic and ultimately fatal I will not hold too tightly to that hope. Instead I hope to enjoy each day that comes and find the good in every day regardless of my state of health. So much of our lives are so completely out of our control and often the only aspect we can control is our attitude. So my lung function may or may not be higher in 2015, my lungs may or may not struggle to breath more often than not in 2015, and my bacteria may or may not continue to win over precious real estate in my lungs, but I do know that I will enjoy 2015, CF be damned!

Friday, December 19, 2014

Two and a Half

Dear Takey,
You are hurling towards three and I am just trying to keep up with how fast you are growing! You spend your days trying to be  as independent of me as possible only to run back in my arms and snuggle close asking me to carry you "like a tiny baby". You are discovering who you are and who you want to be testing your wings (and at times testing me!)

A trait you have had since you learned to talk was bossiness! You also are a rule follower and you like to enforce those rules (hence the bossiness). On playdates you are quick to tell your friends what isn't acceptable, "No climbing on the table!" You shout to squirrels or cats that may wander in the road ensuring they understand the rule is, "You have to hold hands when crossing the street!" You also are wildly bossy (in a loving way) to your cousin. Recently, at my parents the two of you went outside and when your cousin ran to the (locked) pool gate you ran after him.
"Stop! Stop! Look me in my eyes. Do NOT go in the pool!!" Needless to say we are working on respectfully telling others the rules.

Your imagination is bigger than life! You pass in and out of pretend and reality that i often confuse which is which. Like when you shouted there was a black widow in your cup. I ran with the speed only a worried mother (with crap lungs) could run only to watch you coo into your cup at the imaginary black widow mommy and baby pair. There was also the time just after you turned two (before i realized how much time you would spend in an imaginary world) that you shouted to me that it was too dark to see. We were in the sun filled living room and I had slight concern for your eyesight. When I inquired you explained, "I pushed this green button on the wall and now it is dark!" and then just to be sure I understood you assured me, "Mama, it's just pretend".

You are wildly independent and refuse help when going to the bathroom. You use a chair to turn on the light, hoist yourself on the adult toilet, you flush and even turn off the light yourself. Other times you ask me to cuddle on the couch and pretend you are a tiny baby. It this dance of running from me to be independent only to run back for reassurance. It is wonderful watching you grow and change, but I am glad my arms are still your favorite place to be.