My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!

Love Love Love

Always Always Always

Wednesday, March 3, 2010

Todays random thoughts of dislike...

Another day, another admit. We've been here 24 hours now...and I'm already pining to go home. I really hate this place. hate the smell. hate the hand sanitizer. hate the cold shower. hate the food. hate the "contact precautions" that we're on that isolate us even farther. hate all the disruptions. hate having no real privacy....on and on and on. BUT....
I love this place. I love the nurses. I love the doctors. I love the volunteers. I love the hospital school teachers. I love the child life specialists whose job is to come and play with the kids, (the BEST JOB EVER!) i love the pharmacist who mixes my sons IV's. I adore the many pumps which allow my son to recieve both IV antibiotics, IV lipids and nightly tube feeds all simultaneously. I love the quiet that sometimes accompanies the late night, long after shift change and daily visitors...when all the docs and even most interns and residents are gone from the floor....ooooh so love hate.
but more than anything...i hate the two words i heard today. hate would be a gross understatement. i've heard these words many times in my lifetime, in various contexts and i've read them in books, and in research journals and all sorts of places. And come to think of it I have heard many synonyms of these two words many, MANY times the past few months now that I think of it, but none of those other terms holds a candle to the two words i heard today. the most painful phrase a mother could ever hear. the most horrid two words possible.
Try that on for size. Let it fully sink in. I really cannot think of a more powerful two words together than that. My greatest fear, a mothers worst nightmare. Lets put it into the proper context though...when those 2 words were spoken today, they were not meant in a dire context, as in my son is in respiratory failure and is in immidiate peril. It was simply said in reference to the ongoing lung distruction that is occuring each and every second in my sons lungs. Not much of a difference, but hey I'll take all the difference I'm granted between those two distinctions. We are being cared for by a new doctor, who recently joined our CF team from John Hopkins University hospital in Maryland. I have never met him before last night. He has never met me or my son as well. I don't know his manerisms and he doesn't know the way I process information given to me. So I think I'll let this one slide. Maybe he doesn't realize that's a phrase that is not to be said lightly. it is grave. it is painful. my whole lifes greatest fear. I can't even recall the sentence he used it in...something along the lines of "going over Conners chart and his labs and xrays from last night...blah blah blah....such and such goes along with his respiratory failure...yadda yadda" hhhmmm....ok maybe i'm kinda new to this whole prognostic side of CF or chronic disease in general...but bed-side manner side of me speaking here thinks...ok well thats probably a phrase best only to be used in the most dire and extreme circumstances. am i wrong here? so now of course naturally i forgotten everything else we discussed....except that I asked dr m to get Conner on the new Cayston therapy...and he agreed he'd try to get that for him asap. so small victory for today...
so I bought the book "Beyond Breathing" by Margarete Casselina, mother to Jena C who died from respiratory failure and cardiac arrest when she was 13 from CF. I read lots about how inspirational it was, and have heard numerous good recomendations about this book to me. So yep, i bought it and first I was SHOCKED by how thin the book is. Only 133 pages. thats it?! sum up your everlasting pain, your childhood, your daughters 13 years and your grief after her passing in 133 pages? and thats including 3 pages of a glossary in the end...hhhmmm...But I read it. I'm very curious if any of you have read it and what you thought of it, because I don't know if it's just me, or if it's because our situation is heading in that direction more swiftly then any of us had ever thought before...but I just kinda didn't get it. I can see it I guess being inspirational from many perspectives, people with CF, those without it, those who've never heard of it, and maybe even some parents of cf'ers. But not me. and maybe it's just me. because of all the raving reviews i heard of it. so it must be just me. clearly she is in pain, that is absolutely for sure and i can genuinely feel some of that pain alongside of her. but i feel there's just so much more she left out of it. it kinda jumps from place to place, one paragraph your here and the very next paragraph you're all the way over was kind of hard for me to follow. but it was absolutely evident she is grieving. She is suffering thru a circumstance no mother should ever have to endure, she's still fighting, and she still absolutely loves her Jena. You know what I think it is? Everyones journey with cf is so completely unique, how CF manifests in them, just as each and every life is preciously unique. So naturally there must be a very unique distinction from ones grieving a loss of a child to another. maybe thats it. i guess though too, i was hoping for more answers from this book. coping mechanisms. clarity. ideas. i think maybe i set this book up to fail, because i expected too much from it. so anyway...guess maybe it's just me...but i kinda don't know what all the fuss is about with this book. but i think i wanted much more from it that she just couldn't deliver for me. that nobody really can deliver for me i guess. Nevertheless I will pray for that family, for the parents who are without their baby girl, for the brother who also has CF, who lost his only sibling, and even for Jena...that she is finally able to breathe.
My husband is on his way up here right now...he's staying the night with Conner man so I can go home and be with my other 2 babies, and for that I'm so extremely greatful. Lots to get done there, bills, cleaning, appts and don't forget lots of loving on my babies...AND a comfortable nights rest in my own bed...
so on that note I will end this lovely little negative blog post for today. And if you take anything away from this post, please let it be to NOT say respiratory failure...UNLESS it absolutely NEEDS to be said...kapeesh? ok...then...

1 comment:

  1. Random lady from the internet- found you by way of Confessions of a CF Husband, (I think?) Anyway- I am praying for you and your dear family. Just a little note of encouragement, such as it is.


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