Today he was in pain.
Back 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.
I won’t.
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
Hug him, kiss him, talk to him, love him. Do all of these the best way you know how.
ReplyDeleteTake pictures, keep writing when you can.
Oh Sarah, my heart aches for you. I am sorry your family has to endure this pain.
I really have no words...just tears.
ReplyDeleteLove is so powerful, and so amazing. It knows no bounds, and especially not distance. I wish I could just pick him up, and hug him & hug you. You're all so brave....and so strong.
I can't tell you how grateful I am to know what I do of you & your family. Such blessings.
Conner is never far from my thoughts. He's in them several times a day; and so are you, Brad, Hunter and Bradyn.
So much love for you all....
Please stay strong; and post as you can.
I just want to hug you Sarah. ((((()))))
ReplyDeleteAbsolutely heartbreaking, Sarah my heart is breaking every time i read your blog I feel the pain in every word you write. Unimaginable not knowing what the next hour will bring, You don't have to be told as I can see you are making every minute count, every memory last, I know its not enough as this should not be happening, and no Mother should have to go through what you are going through.Life is so cruel and makes me so mad at times but there is not a thing in the world we can do too change it.(with all my heart I wish there was) Sending love , hugs and kisses to all the family at this very difficult time. Elaine x
ReplyDeleteSarah -- I wish there was a way to take away your pain. Please know I am praying for God to sustain you through each moment!
ReplyDeleteI am still praying for peace and comfort for you both. You are doing an amazing job, and it is surely the hardest job in the world. As I read your blog, I bear witness to yours and Conner's strength and it stays with me throughout the day. I hope that on this day Conner's pain is under control and that you have some peaceful moments together.
ReplyDeleteI don't know what to say, other than I'm so sorry you are having to go through this. I'm am praying for you, your family, and Conner.
ReplyDeleteSarah,
ReplyDeleteChrist is many things, among those- A HEALER. Sometimes that healing comes in the form of a miraculous physical healing, but more often I believe HE HEALS OUR HEARTS.
I have a personal knowledge and belief of an afterlife in which I will be reunited with my loved ones. I hope you have a similar knowledge.
He knows your pain. He is there to comfort you. I pray that your family's hearts will be healed.
Continued hugs and prayers for you Sarah.
ReplyDeleteSarah,
ReplyDeleteLifting up your family and precious son in my prayers. That last picture said it all, the pain on Conner's face is heartbreaking, praying the Lord eases his pain.
It may be a painful smile but a precious one!
ReplyDeleteYou don't know me but I found your blog through a common friend. I have never lost a child. I am a mother of two, but I lost my father to ALS. Similar in the fact that he lost his life to finally not being able to breathe. I can no imagine having to go through what I watched with my father to having to do that to a child. My heart and prayers go out to you every day. I have no words other than I am praying for you and crying along with you and will continue to do so.
ReplyDeleteHello Sarah,
ReplyDeleteMy daughter, Jenny, follows your blog and I have read it from time to time at her suggestion. I am deeply touched by what you are going through. I also lost my firstborn to CF. Sometimes it's even hard for me to say that because I don't feel that I lost her. I believe that God took her hand in His and took her home Himself. As I held her close to me and the end came near for her, He blessed me with the greatest comfort that I could ever imagine. In those final moments, the Spirit of God whispered to me, "She is healed," and again a second time, "She is healed!" In that very moment she took her final breath, but there was peace for me... so much peace. I can't say that there is never any pain or that I don't miss her, but I can still say that peace is the thing I feel the most. As much as her body was finally healed, so was my heart healed. This is my prayer for you...that you can find His peace and know that Conner is fulfilling the measure of his creation; that he is doing what God sent him here to do.
My love to you and your family and a promise that God knows you and knows your every pain. He loves you. Trust in Him and His light will still shine through.
Lisa
praying for you. inspired by you. heart torn out for you. loving that little boy. praying for you.
ReplyDeleteThinking of Conner today, hoping his pain has eased and he is relaxed and enjoying the company of his family. Rest, precious boy.
ReplyDeleteIt breaks my heart to read this, mama. I know I would be having these same feelings if I were going through this with Ricky but you put it in to words so well. I wish you didn't have to.
ReplyDeleteI apologize if I missed this somewhere, but do the docs know why his back is hurting? Is it actually his lungs hurting or something else?