i’m so tired of this reality.
i’m ready for it to stop.
i hate that he’s not here. i hate that i think about him nonstop in every activity in every second of everyday but i can’t hold him, or see him, or simply hear his sweet voice except on my voicemail. i hate it.
i feel such anger at it all.
some days i simply don’t get it.
it makes no sense to me.
i can’t keep him off my mind. not for one minute. not one full minute. and that kills me. because i miss him so desperately. and for 60 seconds i can’t get my mind 100% off of him.
we don’t deserve this. our sweet conner never deserved this. but really, nobody’s kids do.
no kid should have cf, or cancer, or any other horrific disease. it’s unfair.
how in the world did we get here?
i haven’t gone up to see conner in a week. i can’t. i feel so horribly guilty about that. i know i shouldn’t…afterall he’s not truly there. but ive been going there every day to maintain his area and take him new flowers and i haven’t. because it hurts…to the core.
i havent just lost my son, i lost my security, my sense of fullness, my no fear, no worries attitude. its all been replaced with scared vulneralbility, anger, frustration, rage, sadness, mind wandering, body exhausting mind numbing silence and pain. i feel i’ve lost friends. i’ve lost compassion, ive lost so much in such a short amount of time. life as i knew it to be, is over. i’m forever changed. my world is 100% different and i’m trying to figure out where to start rebuilding from the ground up. and thats devestating. because i don’t want to. i loved my previous life. i was happy, secure, full of energy and hope and full of miracles and research and i was full of the fight and loving every moment of feeling like what i was doing was saving my sons life.
slap me in my face because i couldn’t have been farther from the truth.
i wasn’t saving him.
i was prolonging his death.
i was prolonging his suffering…and for what
we lost anyway
and that is mind boggeling devestating.
it is kicking me while i’m already down.
feeling like it’s friday and the home health nurse should be stopping in and we’d be coming up with next weeks ivs and game plan and going over whose on call that weekend and me needing to call the cf clinic and getting answers and meds…and now i have none of that.
i have nothing.
i have lost my son.
the job i held so dear to my heart, that made up everything that i am,
my dream job is gone and left me with no replacement…
my boys fill my day with business, diapers, feeding, swim lessons you name it. but i feel so empty. being just a mom isn’t what i was created to do. not that being a mom is bad or unfulfilling because it’s not. i am a mom, i have been a mom for almost 8 years…but being a mother of a child of cf or any disease i would imagine is a special calling. its like being a mom with an extra set of mommy responsibilities. its a huge time commitment. a huge heart commitment. and now a huge gaping wide hole that no one can fill. not me, nor my husband or either of my living sons. they need me absolutely, but not in the way that conner did. and i feel utterly helpless, unimportant and empty.
I have no words I can think of to say. I want to have this brilliant phrase that makes the pain go away, even for a minute, but it is just not there. Please know that I read each of your posts and I am praying through the pain with you. I will continue to follow you and have faith that there will be a day when the pain subsides a bit!!
ReplyDeleteOnly GOD can turn a MESS into a MESSage, a TEST into a TESTimony, a TRIal into a TRIumph,a VICTim into a VICTory. GOD is GOOD... all the time!
ReplyDeleteI read this a few days ago and immediately thought of you and the change and struggle you are going through. I lift you up in prayer every day asking God to give you the comfort and peace that you need.
Blessings from TX.
It has to be hard to go from all that you did for Conner with treatments, daily care, research, and fighting for his survival to a daily grind that only involves loving and caring for two healthy (& stinking cute) boys. I think that while you can't save Conner's life here on earth, your fight is to find a cure, to help others in their daily struggle with CF. You are so motivational to others and you have the power to influence people with Conner's Love Story. Maybe God is using you and this horrible life event for you to get people to know him through the story.
ReplyDeleteI know this is harder than I understand. Praying for you sweetie.
I have the postcard of Conner hanging on my mirror and pray for you and your family every day. You weren't prolonging his suffering, you were being a mom, and you will always be a mom. Conner is in heaven thankful for everything you did. He's not gone, he'll always be in your heart and watching down on you. You have the support of so many great friendsand every person who is fighting CF too. We are all a team and though it is an unfair, nasty, unforgiving disease, we won't stop fighting it, we'll do it for Conner.
ReplyDelete-Lauren ihavecfsowhat.blogspot.com
I don't know you personally and I am not saying anything to be out of the way or judgmental just so you know. I think You are wrong. I have seen you say so many times being a Mom to your two healthy boys isn't enough for you. You need a job of a sick child to feel like you are fulfilling your role on earth that God gave you. If they are not enough for you, what is? God gave you these two healthy kids too. And you are wrong because they probably need you now more than ever. They lost too. You have to realize at some point as much as it sucks and as much as it hurts that this is it. You can be fulfilled with what God has given you for now and realize that life is not promised to us and that if we don't appreciate what we DO have then more can definitely be taken. You are someone special even with Conner gone and do you think he would want you to feel this way? He would not want you to continue on this path. He would want you to be happy that he is ok now and not suffering and so free from all this medical crap he had to have to live. You can continue to fight cf without him and more importantly because of Conner. Let your sadness be your fuel to fight the disease but do not fight life. You have a family here that needs you and gives your life meaning also. I hope this doesn't come across as harsh because i honestly do not mean it that way. I seriously am one to not just say what people want to hear but I want to say what I have honestly thought and prayed about. And please don't judge me, anyone, because nobody knows everyone's story.
ReplyDeleteHi Sarah,
ReplyDeleteI am sure that Conner does not feel like you prolonged his suffering or death. On the contrary, you loved him. You helped him have time with you, his dad, and his brothers. What better gift could you have given?
Remember, you need to grieve. My mom journal/notebook from around when we lost Beth have much of the same pain. Don't beat yourself up for feeling lost, or that you aren't good enough for your surviving children.
You're never just a mom. Having surviving children means you will never be that. I know, I am such a child myself.
Conner didn't lose his battle, he just beat it in a way that wasn't what those left behind wanted. He endured to the end, he did what God called him to do on Earth.
Take care, and May God Keep you in His Tender Care.
oh hun - your fight for him was far from pointless. every child deserves a hero - deserves to have someone fight for them when they can't do it for themself...and you did this for Conner. It was the right thing to do - please don't question that. <3
ReplyDeleteGod will get you to a point where you can feel alive again (even if you don't feel you want to or that it's not fair to ever feel that way again).
**hang in there Sarah <3 I know you can't see it, but from an outsider looking in you ARE strong, you are healing, and you are making your way through the grieving nightmare. God will patch your heart so you can live the rest of your days on Earth with some degree of peace, and then he'll heal it whole in Heaven in due time.
...praying for you as always.
Your fight, his fight - showed a world
I read your post and thought a lot about you today. I imagine the role that you had all the years Conner was with you. I can see how this kind of role in a child's life is a full time actually OVER full time job. You had definable goals, you and your family were going to beat CF. You had a mission and the road that you traveled seemed defined.
ReplyDeleteNow, that your Conner is gone the years of you and your family fighting the battle is over. It reminds me in a way of a soldier returning from battle. How do you get back to "normal" when your normal was filled with fighting this horrible CF demon? Now, it seems that your battle is to try and define a new normal for you and your family.
I lost a child at 6 days and my other son was in the NICU for 5 months. I remember that it wasn't until all of it was over that me and my husband finally could grieve. Now, I know that my situation in no way compares to yours. You have been working nonstop full tilt battle fighting ever since Conner came into your life. Now, that battle is over. Now what?
Breathe....
You are an incredible mother for what you have gone through. I read your entries and they are so heart wrenching. Tears have come to my eyes many times.
I am not sure what advice to give to you and I know you are probably not looking for advice now. Just words of comfort and compassion which is what you most definitely deserve.
Give yourself time. I know that phrase sounds so trite and so cliche but it is true. You are going through the stages of grief right now.
A few things that I have realized after losing a child and the aftermath after is that it is okay for things not to be okay.
It is okay to never get over this. You said so yourself, not so bright and shiny. Heck, I know my life isn't, probably no one's really is. However, that is okay because it allows us to take joy in the smallest of events. To see the miracle of life. To not take for granted each day that is given to us. To not overlook a red lego on a driveway :).
You are a survivor. You are a mom. You love your children. You love your husband. You are a warrior.
Give yourself time and breathe.
I don't know what to say, but I feel compelled to reach through the screen and give you a huge hug. This is awful, the most awful thing a mom can ever go through. I know that someday you will be able to find happiness in little things again, but life will never be the same. ((((HUGS))))
ReplyDelete