I went to see him today.
i couldn’t stay.
i started to have a panic attack.
i hate it there.
i can be there to take care of his flowers and balloons and to keep things orderly…
but i hate it there.
standing ontop of him. like he’s some kind of bug. like he never meant anything to anyone. knowing that i will never again get to feel the warmth and tenderness of his earthly hugs and snuggles…heavens never seemed so far away then it does today…so so far away.
i miss him.
it’s all consuming
overtaking everything i do
overpowering my every thought
overshadowing every activity
everything in my world revolves around him now.
i miss being needed in the way conner needed me. those with healthy kids won’t get that…but you out there like me, know what i’m talking about. cf is an exhausting disease with hours and hours of therapies and medications and treatments and appointments and iv’s and hospitalizations…it takes special people i guess to be able to juggle all of that and remain a teeny bit sane…i’ve never complained of doing the job of saving his life…because it meant we were still in the game. he was still alive. i miss being in the fight. while i still fight cf its changed now. because it had to. no longer weaponed with an arsenal of medications and machines, now i have only my two hands to type, my one voice to speak, and my heart to advocate for a cure. i miss the “life” fight…
i hate that life seems just too easy now. not emotionally but physically. day to day having only two healthy kids is almost boring. it’s just too easy. they have no medications. they have no breathing treatments. heck our biggest daily fight is what they’re going to wear that day…whats that? it’s nothing. i’m left no longer able to fight to save my sons life because i lost him, to now having to try to physically and emotionally raise these other two precious lives when i have no clue what the heck to do with them. theyre simple. never again will i be willing to hear some excuse of why people with healthy kids are late somewhere…it’s nothing compared to the fight conner and i had to fight each and every morning just to leave the house…up an hour early to squeeze in treatments to run am errands and home just in time for the next one…it was complicated. but fantastic. and beautiful. and cherished. because i was still able to touch him. to hold him. to kiss him. to hold his hand while he got blood draws. to play with him in the hospital, or to watch tv movies over and over and over again with. to enjoy pajama monday and library monday with him. to simply smell him…
i miss him whole heartedly and desperately today. and i’m bitter. how in the world did all of this happen…
i wish i was still fighting…