Life in general is a roller coaster ride. We've all been there, feeling happy one minute, sad the next, 2 hours later angry, followed by pure joy 15 minutes after that. That's just the way life is, has been and always will be.
But what about that CF roller coaster ride? Oh, how I wish I didn't have to ride it at all. There are times I handle it well. I get on that ride all nervous, but in the end I get through it just fine. However, this ride never ends so other times that ride ends up with my throwing up all over my shoes, or my husband's shoes if I'm lucky. :)
The life of a parent with a child that has CF is full of ups and downs. The really sucky part is that no matter how well we do with helping our child manage their CF or how well they themselves are with following CF protocol...CF rears it's ugly head up and pushes that roller coaster ride down, down, down and down. Sometimes "down" ultimately means death! UGH, just typing death makes me want to hurl. It's no wonder I want to jump off this ride and go somewhere and do absolutely nothing!
Today I had a major roller coaster ride, but the ride started a couple of weeks ago. First it was a cough here and there, then it was more frequent in the mornings, eventually it became constant and enough so that Andrea herself asked that I take her to CF clinic to get a throat culture done. Now we're waiting for those test results (the nervous ride). Early this morning I helped Andrea with making sure she did all her treatments, took all her meds plus added some homeopathic things for her to do, she looked so puny....no matter though, off to school she went (the worried ride).
Over the noon hour I went to our CF board meeting and the emotional ride continued...listening to the wonderful news of Kalydeco and everything else the CFF has in the drug pipeline (the optimistic ride). I met new people wanting to help the foundation that have no personal connection to CF (the gratitude ride). Later I spoke with a 40+ year old CFer and was feeling so great that she's lived this long; then the ride plummeted as she talked about her two brothers she lost, one 14 years ago, the other just a few months ago (the sad ride). I listened to a CF mom talk about all she's doing to raise funds for Great Strides and how she raised over $24,000 last year alone (the proud ride)! I felt some stress when the meeting continued with the challenges we face to help cover all the research needed to move forward with all the medications the CFF wants to test, to help those with the DF508 mutation. WE NEED MORE MONEY! How are we going to get more (the desperate ride)? As you can see, a lot of emotions going on and the ones I felt during that meeting alone were just within an hour and half time frame...yikes!
As I type this I'm listening to my baby girl cough and expectorate and I'm feeling sad, I'm feeling helpless, I'm feeling angry and I'm feeling like I need to punch something or someone right in the gut! What I'm really feeling though is...I WANT TO GET OFF THIS FUCKING RIDE, but I can't. I can't because Andrea is on it and there is no way I would let her ride it all by herself!
So, I'm ready to take on what ever tomorrow brings. I'll continue with my roller coaster ride hoping I feel fine during it's brief pause, but just in case it's another whirl-wind of emotions...I better--just in case--have a barf bag handy.
<3 Perfect. As a Nan and, at the moment fulltime carer of a 2-year-old CFer I know the feeling.
ReplyDeleteI am a Nan, Nan's fix things, their kisses mend bloody knees, they have the candy hidden and pancakes for breakfast are a staple. They let you do things mummy and daddy don't. A hug and a kiss from a nan can change the world, except when it comes to CF.
My mum was a great nan, I always wanted to be her, but I can't :(
Sometimes it just feels like a dream - a dream that never ends.