Thursday, March 11, 2010

One of those days…

I’m having one of those days.

Not just a case of “oh, it’s so gloomy & rainy outside…I just want to be grumpy.”

I’m having one of those days of fearing what’s ahead.

Now, I know…stop imagining the future Jen, enjoy today, today was a good day and hopefully tomorrow will be too. I tell myself that all the time. And the majority of the time I believe it, and cherish each moment.

But for the last few days, I have really…really…really hated CF.

Maybe it’s the unforeseen diagnosis placed upon a brand new baby of a close friend recently…that whirled me back to just over a year ago when I really hated having to constantly hear, “you gotta just live for today” and not fearlessly (and let’s be honest, naively) looking ahead into a future full of hopes, happiness & healthiness…consistently grieving the life that shoulda been.

Maybe it’s the fact that the tight knit CF community lost both a thirteen year old & a fifteen year old to the disease….within a week. The reality of the disease smacking me in the face.

Maybe it’s the fact that it’s Great Strides fundraising time again. That time where I am trying to raise money for my son. My son that has an incurable, life shortening disease. Isn’t this kind of stuff supposed to happen to someone else? Isn’t this the kind of stuff you read about, or see on the news, and thankfully say…. “whew, so glad that’s not me.” And knowing that the majority of people reading this are doing what I did for so many years…read a “sad” story, be thankful it’s not them…close the page and move on.

Maybe it’s the fact that this upcoming season, I will have an energetic toddler wanting to splash through puddles, play in the mud…all the while knowing that these same things we touch & breathe in everyday without a second thought, contain bacteria that could potentially be life-threatening to him. That could land him in the hospital. That could add hours of new treatments to his day. That I won’t be able to hold him in my lap all the time anymore now, constantly sanitizing his hands. He needs to be around this, to have a life and to not live life in a bubble…but that doesn’t make it any less scary.

I hate having these kind of days. I hate being scared. I hate looking into his innocent eyes knowing that life is going to be much harder on him than it should ever be. I hate dreading him getting older, knowing that this disease only gets worse. I hate knowing that in reality, right now, there is nothing I can personally do to slow it down.

I hate, hate, hate having to be in a position where I pray every night that we can raise enough funds to truly make a difference for our son’s cause. To help push medications & research through the pipelines. To help the thousands of people around the globe praying every night for the same wishes Casey and I have.

I hate having to depend on doctors, researchers…people I don’t even know to make that difference for my son. Depending on others to create a positive & “healthy” outlook for my son’s future. That it takes an entire team of people to keep his life “normal.” As a parent…I want that control. I want to make things better. And I can’t. And it sucks.

So please bear with me, I am just having one of those days…


  1. Popped over from MckMama's Community. So sorry that you are having one of those days BUT they do happen. Here's hoping that you make it through today and that tomorrow is a better one of those days.

  2. I hate those days! But I guess we all have them sometimes. I also hate when people say to live for today, or ask, how do you do it. I just want to punch them. Sending hugs your way today!

  3. I hear you 100% i hate those days. i hate the thoughts of fear of bacteria vs living normal....i hate cf. hugs to you this day. hugs tou your little boy too. hugs

  4. Unfortunately I have many of those days. Seems to be worse lately. Not only does my Son Tyler have CF, My mom is currently in the hospital struggling through the end stage of Emphysema. I can't take for granted the involuntary breathing response I have. As I sat with my Mom last night while she was getting her breathing treatment, holding the mask over her nose and mouth telling her to "just breathe"....Hearing the words "I just can't any more" ....I hate CF..I hate Lungs...

  5. Found your blog through blog frog. I'm so sorry you're having "one of those days". I know you have probably heard lots of stories, but a friend of mine is 33 and lived her entire life with CF. She has a three year old daughter and a little boy due any day now. She has a wonderful life and family. I really hope you're week gets better!

  6. Oh wow. In some ways I know about "those days" and in some ways it's all your own - it's one of the things about having these networks of friends is that it is encouraging that there is someone who knows what your going through; sad that there is someone who is going through worse; and bitter sweet that there is someone who is going through better. But wether it's your turn to have "those days" or a friends turn - we help each other, empower each other, validate each other, and pray for each other. I hate those days too. I hate that there are things out there hurting our babies and making mommies worry. But in some ways I take peace in the fact that it's not up to me, that the Hands that do hold our lives are far more powerful than mine or any doctor or scientist. And knowing those Hands can work miracles gives me hope, strength, and comfort....during "those days." Hang on. You are SO entitled to feel this way. And I am so encouraged that you don't always feel this way. :) You're right about enjoying today - your boy is beautiful. He loves you. You love him. And he's happy. And those are wonderful things.

  7. I just started following your blog, Jen and I can 100% absolutely relate. First just let me tell you that your little guys is SO ADORABLE! Our daugther was diagnosed at 10 days old and is already fast approaching her 1 year birthday. I cannot tell you over the last year how many of those "I hate CF days" (as I like to call them) I have had. You put it so perfectly into words. I am praying for you. And for your son! Just added him to my Prayin for CF list :) It is totally ok to have those days...period. I do hope you have a better day today :) Emily