Friday, March 12, 2010
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…
Million For 1
I know I’m not alone when I say that I find loose change everywhere around our house, at the bottom of my purses, floating around the diaper bag, underneath the seats of our cars…
Speaking of, I just found $1.37 of change between our two couches…along with a sock, a comb & two of Gavin’s “Little People” toys…
See how easy it is to find that extra dollar laying around? There isn’t much you can get for a dollar anymore…well I guess you can get a Powerball ticket, but anyways…
Have you heard of A Million For $1? A fellow CF momma who I have gotten to know via facebook, started this idea with their Illinois chapter of the CFF. They are hoping that one million people will donate just $1.
It’s safe, secure…and you are helping out a great cause! Every single dollar counts!
Yes, it’s a different “chapter” of the Cystic Fibrosis Foundation but all the money raised goes to the same place…toward research to find that much needed cure! 90 cents of every single one of those dollars goes directly towards research (the remaining mere 10 percent covers- their employees salaries).
Even in rough economic times…we can all find a dollar, even in your couch cushions.
I need my son to live a full life. He needs to grow old. But we cannot do it without you. Please remember that the CFF does not receive any government assistance, we depend on your generosity.
Please also remember that there have been great strides towards a new medication that could control Gavin’s Cystic Fibrosis through an oral medication taken just once a day.
So please, click HERE, and donate your dollar!
Wednesday, March 10, 2010
Shaken
The CF community was shaken up pretty severely last week as we lost yet another person to this disgusting disease.
Beautiful, sweet Miranda was only 13.
At thirteen she had already endured more pain than most adults. She struggled to breathe. She had a double lung transplant. She struggled to breathe again…
I hate this disease.
99 percent of the time, you will see me with a smile on my face…pushing forward…keeping my head held high…full of hope for a bright, long future for my son.
Yet, even in 2010, after numerous medical advances…no one has been able to cure Cystic Fibrosis. No one could save this thirteen year olds life. She never got to experience high school, prom, college, fall in love, get married…live life. It makes me livid.
I hate this disease.
Even though CF has remained nearly hidden in my son’s body, I know that monster is in there. He looks so perfect on the outside…that sometimes it’s hard to believe it is in there trying to take over his body. Slowly clogging his lungs, devastating his digestive system…
Tonight, Miranda’s mom had to rename her daughter’s support group from “Prayers for Miranda” to “Memories of Miranda.” No mother of a thirteen year old should ever have to go through that. No child should have to have their life cut so short.
I hate this disease.
Tuesday, March 9, 2010
This was…
the result of our first attempt at eating cheese ravioli the other day
Obviously it is much cooler to squish in your hands than actually chow down on it!
Well, at least he got some practice using a spoon…
I think he may have actually gotten some from the tray into his mouth using the method :)
Monday, March 8, 2010
There are signs…
of spring all around us, here in Minnesota. The temperatures have soared into the mid to upper 40s. I’ve started to see people sans coats in t-shirts, flip flops…shorts.
I know, right??? Even I think that’s crazy.
When you close your eyes and picture the spring…what do you think of? Flowers? Green grass?
Yet, let’s be honest. The grass might be visible (sort of) but it ain’t all that green…
The signs of spring are really…not all that pretty.
Don’t even get me started on all the mud, dirt & sand that gets dragged inside. I feel like I need to duct tape a broom to my arm to even try to keep up.
But there are some exciting parts. Such as being able to actually walk down the now ice free sidewalks…
Until you reach the end of that sidewalk and run into this lake sized puddle…
that I got to walk through while carrying Gavin in his stroller. That sure was fun…
But every day, I notice less snow and more grass. I notice more people out walking around. I notice the local stores opening up their garden sections. I notice the bright spring colors on display in the mall.
So while it might not be pretty right now…I know that in just a few short weeks the flowers will be blooming, the grass will be green…and it just might be warm enough for me to don a pair of shorts (many apologies to those of you having to witness my pale, pasty legs before they are given some time in the sun).
Spring is coming & life is good. Now…where did Gavin hide my sunglasses…