I’ve been trying hard all day to not write.
to just get thru it, over it and go to bed and wake up to tomorrow.
I almost made it.
I don’t know how to say the feelings that have been going thru my mind all day. I’m sure they will sound bitter, or sad, or well, who knows really. there was amazing news announced yesterday about CF. I’ll spare the fancy scientific details, but the trial showed marked improvement in lung function, ability to breathe and making the sweat-chloride levels of those with CF taking this drug, appear normal…like they didn’t have CF. that is the very lei-mans description of it. it’s truly more complex than that. one amazing Cyster taking part in the drug even said that it was the first time she’s been able to take in a deep breath since decades before.
that is amazing.
the CF community is so excited. this is HUGE news! a giant leap in the right direction. it doesn’t cure CF, nor does it work with every mutation that causes CF, but the science there is truly remarkable.
being a part of the large CF population online, whether that be blogs or facebook I get to keep in the loop of how everyone (or their kiddos) are doing. I love that even though we’re spread apart across the miles that it’s like they’re right here in my living room with me as I read their status or blog postings to check in.
it also throws a lot of the bad CF back in my face. the regret.
it reminds me how I’m no longer a CF mom. A mom, yes, but a CF mom…no. My two living sons are perfectly healthy, thank God for that. It’s a true blessing. But for 7 full years I was a CF mom…and here’s where this blog truly begins…
CF moms…CF dads…even young adults with CF…
it is so critically important to not identify yourself as only a CF parent. or a person with CF. I know exactly what you all are going thru with the constant worry, IV”s, horrendous medication schedule, school IEP issues, ports, g-tubes, insurance denials…all of it. I know how we become germ-a-phobes and delicately find the balance between keeping things clean and disinfected and putting our child in a bubble. I know. I get it. I used to go out too, and read, or walk, or volunteer or whatever…thought my life was balanced.
it was no where near balanced.
cus I was volunteering only with CF specific tasks and groups, to help find a cure…which is so important, please don’t misunderstand. I constantly worried over germs and Conner getting sick or whatever, CF took over my life. There are parts of CF that need that kind of extreme attention…but not all of it.
I’m on the other side now and the hardest pill for me to swallow is how much of my time I wasted over CF. How I’d obsess over colds and stuff and skip out on some activities that were probably more than OK to participate in. How now after losing Conner, I can see exactly how much my life was consumed and controlled by CF. and how now…I have no real clue who I am. the me without CF. the me, that I never gave a chance to live and figure out on my own, until I was forced to.
see…I’m so happy to see such advancements being made in CF…and I know just like you do as well, that CF will be cured in the near future, in our lifetime. And that is important, and deserves celebration.
but don’t miss out on today, waiting for tomorrows miracle.
because TODAY is a miracle too!
each lung infection although it’s horrible…there really is purpose behind it. I know that sounds strange trust me…but I have the “gift” of hindsight now. each time I ran thru the house frantically packing our things to be admitted because Conner couldn’t breathe, all I thought about was how scared I was, and the anxiety filled me from head to toe. but now…looking back…while it still plays in my mind and I can see myself running across the house, calling people in a panic to come grab the other kiddos…I actually got a picture of a look that was on Conners face watching me do this.
I was scaring the be-jesus out of him. I was letting CF take over me. My stress. My worry. My panic. I was allowing CF to turn me into this panicked mom that I wasn’t. life was trying to tell me to slow down, to breathe…to stop panicking…to not let CF change who I was. but I didn’t listen. I thought I was doing the right thing. protecting him. helping him.
I’d get frustrated so often how long meds took. I used to dread the morning routine. how some families take for granted that they simply can get up and be out the door in 10 minutes. but not us. it was at least an hour to get all the enzymes, vest, IV’s, breathing treatments and inhalers done. just to start the day. then I had to pack his boost and more enzymes (always the enzymes!!) and inhalers and a change of clothes incase his stomach failed to digest yet again, and bolus extentions to do a feeding if he couldn’t eat, and then oxygen tanks etc. it was all consuming just to get out of the house. and now I can only dream of doing that again. I’d do it with a smile if I had the opportunity. I wouldn’t let CF cause me panic or frustration again.
I never knew it…but I WAS MORE THAN CF…
and I bet you never realized that you too, are more than CF. it’s important to take the disease seriously and get the treatments done that need to be, I’m not discounting any of that…or even volunteering for a CF event…all of it has it’s place…but what little life we are given…we are cheating ourselves if we don’t realize that CF will take over everything if you let it. It doesn’t wait for your permission to kill and destroy your life it just does it…and we don’t know any different. but CF life demands balance. Fully intentional balance. it won’t just happen. you have to make it happen. it’s easy to see others CF postings, of the bad day they’re having and then easily join that panicked state of mind…but I challenge you to be more aware of just what CF will take from you each day.
CF doesn’t just cause inflammation, tissue damage, and frequent infections. CF causes panic attacks, anxiety, doubt, fear, deceitfulness, unworthiness, stress, worry, fatigue, and unbalance. Stress is the root of so many health problems…and stress comes along with CF. But I challenge you to find an outlet. an UN-CF outlet. start to define YOURSELF. not you with CF. but the YOU without CF. Find friends that don’t know about CF that you can simply be normal with, you can talk a bit about CF because it does affect your life, but it shouldn’t ever determine it or dominate it.
Because now…being on that other side…that is one of the hardest things to find again…is me.
the me without CF.
and if I had the chance to do it over again, for sure I’d know who I was, and focus on finding many, MANY non-CF things to help define me. I don’t get that chance…my CF life is over now…but YOU DO. take care of the business of CF, celebrate in the advancements of the CF Foundation, and find good community with CF peers, it truly is an important part of CF life…but be so much more than that.
show CF clear boundaries. Show your loved one with CF that the disease doesn’t cause you to change who you are and cause you to be an anxious, fear driven parent. But that you are so much more than CF…because YOU ARE!!!
LOVE LOVE LOVE