what a day.
a day full of love. thank you to Ronnie for posting our story out there, the outpouring of love and support from the CF community has truly kept my head up a little higher than i could have thought it could be under these circumstances. my head is spinning. my phone is ringing. i hear the doctors voice in my head over and over again. "it's time sarah...it's time" "i need to discuss with you what the end of life with cf entails, you have many decisions to make...." i just can't believe it's all real. i mean, can it be? how can it be? my son is sitting up, talking, sometimes laughing...when his fevers are broke he looks alright, not great, but alright....but definately not like he's dyeing. but hey what does dyeing look like? you see these pictures in movies of people dyeing and it's so unrealistic that maybe he is truly dyeing right now in front of my eyes but i can't see it. i've got mommy goggles on. i don't want to see it. i don't know what i'm supposed to be seeing or looking for. i just don't know. don't know anything anymore.
can he really be dyeing? someone pinch me. i've been crying so much, but then all of a sudden i'll look at him and think..."no...he's not dyeing. he's not leaving me...." it just can't be. he's my child. my firstborn son. my life. my love. my every breaths fight. one of my main reasons for existance. i know he's only on loan to me from God...and I count each day as a blessing...but how can this all be happening so fast? why wasn't there any warning to it....? maybe there was and nobody told me. maybe i didn't wanna fully see it. i don't know. had i known that he was only gonna be here with me for seven short years i wouldve made them better. i wouldve been better. i would've done more for him. more smiles, more family memories...but now...it's all moving so swiftly in the other direction that all i have are the undones and the what ifs. theres not more time for the shoulda and wouldas...and thats devestating.
hug your kids for me. love them. not just say you love them but truly love THEM. each and every moment. Life changes in the BLINK of an eye. Gods plans are not our own. And now I'm just wondering where things are going and when...and how much more time I have to make the best of the situation that I can. thats no way to live. Live each day to the fullest, how cliche but DO IT. kiss. love. hug. hug some more. cry. scream. dance. laugh. play. make messes. have arguments. have pillow fights. make the most of every single moment.
time here is so short and so precious. and i know he's not gone and is still with me, but with the prospect of losing him hanging over my head all i can think about is the what ifs. the i wish i could haves...the regrets. theres nothing more helpless then that.
bless you for your love and your support. you keep me going. the cf community is the most amazing and the most heartbreaking community i've ever been a part of. the group i wish i was never a part of....but because I am, I'm so thankful for each and every one of you. my family. my friends. my fellow sufferers. I pray for a cure. such a miracle that would be.
But for now, my eyes are heavy. there are no more tears to cry for tonight. we've spent the day in the sun with our family and with the grandparents, and conner laughed and smiled and struggled and all of it was just beautiful. i had the clinic call in a strong oral antibiotic so that he can enjoy his bday tomorrow (wednesday) and maybe be home for his bday party this saturday. that is my prayer. brad and i are meeting with the team on thursday am to discuss home vs hospital hospice and advanced directives and intubation, etc etc. until then we're just going thru the motions. i'm ready for bed. i pray i wake up tomorrow and this is all just one horrible nightmare.
i wish...i wish...
