Spent the better part of today watching Conner sleep. Breathing in and breathing out, just laying there exhausted by the energy requirement necessary just to breathe. trying hard to stay one step ahead of this wreched disease progression. Constantly worrying.
I'm so exhausted....
Each day blends into the next...it waxes and wanes and I feel like I'm wasting valuable time in my delirious state. But I am so tired. I wish I could waste one whole day in bed, sleeping. But I know that even then I'd never be caught up.
I just wish for peace....
I want for all of this to end. I don't want my son gone...but I need peace. I need to figure out how I'm going to handle the rest of my time here without him. I'm a planner by nature, and as much as I'm getting done and prepared for when my whole world crumbles, I feel like this is something I can't plan for.
The devestation...
The heartbreak...
The inability to breathe...
To not be able to think...
or form sentences...
or clear thoughts...
I simply can't imagine what it will be like to not be able to hold him in my arms whenever I want to. To look over at him laying on the couch next to me with his beautiful gap toothed grin, with his bright, piercing black/brown eyes...gazing at me. I just can't plan for that...so the constant worry over it, is simply overwhelming me. and exhausting me to the core...
I wish our days were filled with more...
Not sure really what that means...just something more than laying around watching him breathe or sleep...or giggle at a cartoon...I so don't want any regrets. Nor do I want to push him beyond what he's capable of. Everythings getting harder...the days are passing by faster..and my heart is breaking deeper then i ever knew possible...and i just need peace.
only sweet peace...
I wish I could ease your pain. I have no idea how this situation is tearing you up from inside. Your story is heartbreaking. I'm sorry.
ReplyDeleteYou are all in my prayers.
I know this is probably not what you want to hear right now, but I'm worried about you. Are you seeing a grief counselor with your husband? What about a psychiatrist that could actually prescribe an antidepressant? If anyone has cause to be depressed it's you, so don't let the stigma of it stop you from getting help. I have clinical depression and know that the meds changed my life. I know they can't fix what's going on and it's a totally different situation for you than it was for me, but it's something to think about.
ReplyDeleteWords can never fully or accurately express what the heart feels. That said I appreciate every time you share straight from your heart. I cannot even begin to imagine what you feel on a regular basis nor do I want to pretend to. However, hold to the hope that your son's life has blessed others. I don't even know you or your family, but reading your blog helps me to appreciate every second w/ my girls so much more. It has kept life in perspective for me...what's important and what matters. Thank you for sharing!! My prayers are w/ you and your family.
ReplyDeleteMy heart is breaking for you Sarah as I sit here reading your blog. I know how agonizing this is for you, having to watch your dear little Connor struggling with this horrible disease day after day. Why should any parent have to deal with the thought of losing their child? Life just doesn't seem fair does it Sarah?
ReplyDeleteReading your blog takes me back 5 years ago when I was in the same place as yourself, pleading, begging, praying that somehow my son's life would be not be taken from me from this horrid disease called cf. Unfortunately this was not to be and my son earned his wings and joined all other cf HEROES that had gone before him.
You are in my thoughts and prayers Sarah.
Sarah,
ReplyDeleteI continue to come to your blog and read your thoughts even though you are a stranger to me. You are ahead of where I will one day be in my journey as a cf mom. That is the unfortunate reality. This disease robs the children and their families of so many things. I come back because I feel as a fellow momma and woman of faith all I continue to do is offer up prayers for you. I continue to pray for your strength and peace.
With much love and admiration.
Trish
All I can say is thank you for sharing all of your story...all of your emotions and thoughts. It helps us who can only imagine what you're going through, have an idea of what it's really like.
ReplyDeleteThinking of you and your family at this horrible time. praying for you all , feeling pretty helpless and find it hard to find words of any comfort. Elaine cf mom.x
ReplyDeleteThank you for sharing your story, as tragic and as beautiful as it is and as couragrous as you are. I have 3 little ones and cannot imagine what you are going through or that any one shoudl ahve to go through what you are going through. But you find the strength and the courage to look at it every day and fight with your son and that's inspiring. You are in my thoughts and prayers and I pray for your sweet peace.
ReplyDeleteSarah,
ReplyDeleteYou're an amazing mom. Very strong. I know you don't feel like it, but I ache just reading what you write.
Families are Forever.
May you find peace in His loving arms, during the turmoil of life.
My family and I were at the Great Strides walk yesterday in Spokane and I saw the many red balloons in Conner's honor and heard his story for the first time. I am a CF mom as well and as I do not know what you are going through I wanted to say my family and I are praying for you and your family. May the peace of God that surpasses all understanding overwhelm you in your time of need. Anja
ReplyDelete