Today he was in pain.
Today he needed oxycodone, heat packs, and ibuprofen all day long.
He wanted to take Bradyn to the library, as we usually do every Monday in the summertime…so we did. It completely wore him out. He couldn’t catch his breath…and I kept asking him over and over if he wanted to try another day and he refused. This was important to him, so it became important to me. We checked out some books the boys picked out, and came home…and Conner rested the rest of the day on the couch…dozing in and out of sleep…
I’ve been putting off using oxycodone unless he absolutely needs it, because in end stage CF it can hasten his progression as well as slow down his breathing…both of which scare me to pieces.
Today was simply supposed to be our weekly pajama Monday. A trip to the library. Fun in the yard. Laughter. Smiles. Not a day where we go to get daddy’s fathers day gift and Conner simply says “can you just make this quick i really wanna go!” He was in pain. And it showed.
Today was a very strange day for me. I can’t really put words to it, as to why…I have a few things that stick out, but nothing concrete. It just feels different. This all is starting to feel permanent. Very, very wrong. Yet the world keeps spinning, refusing to even slow down so that I may try to catch up with it all…with reality. My friends make plans, our extended families make plans, all of which include us.
But I cant commit.
This is becoming too important.
The time is ticking away. Slipping by each and every second.
With each breath he breathes…
I can hardly remember the luxury of planning things out in advance…we live hour to hour…
I wish I could fully put it into words. But there are no words powerful enough. There couldn’t possibly be. how could there? A child isn’t supposed to die. A mother was never intended to outlive her firstborn son…breathing was never supposed to be a struggle. Oxycodone was never supposed to be in our house. Or oxygen. Or monitors. Or feeding pumps, or medications, or nebulizers and sterilizers and needles and iv’s, and flushes and port supplies and mickey button replacements…our firstborn son was supposed to be the big brother. Be there to help his two younger brothers learn to talk and walk and run and play and ride bikes and read and sing with…
it was never supposed to be this way.
My heart feels so broken. So lost.
I wish I could hold him tighter each night as we sleep entangled in my bed…but it’s not possible. I wish I could love him more during the day and make his smile shine brighter…but I can’t fathom it any better than it is.
CF has effected every single aspect of our lives, EVERY SINGLE ONE. There is no safe place for me to go to anymore. It’s all drenched in CF. everything. everyone.
Everyone I see, is smiling and enjoying life it seems…but I can’t. I’m dyeing inside. My heart is outside of my chest in tremendous pain. coffins. plots. gravestones. memorials or funerals. open casket or closed. speakers. flowers. churches. Everyplace I go and everyone I know have been coated with CF’s horrible presence and I wish it’d just leave me alone. one day. one hour.
some people gauge miracles as a huge healing or a life spared…
my miracle is each and everyday Conner wakes up.
My miracle is a day without planning a funeral.
My miracle is seeing my children loving each other and catching it on film.
My miracle is a day for Conner free from pain…
Some random pictures of the past few days…
Really…the last picture sums up our day today…smiling in the pain…
Love to you