If I smile, laugh and seem to be enjoying myself, it is a front. While I am human and completely capable of enjoyment despite what we are facing, I feel pain down deep into the core of me all the the time. I feel guilt when I enjoy myself, fear when I see Livi's unsteadiness and overwhelming sadness when I see clothes in her closet that I had been setting aside from Aria that she may never wear. Walking through TJMaxx and seeing clothes and thinking, "This would be cute for Liviana" and then realizing, "Oh...she may not even get to wear that size, or make it to that season" was more than I could handle yesterday.
I really feel like I am an empty shell going from room to room, task to task. I love my time with the kids, they still make me smile and happy but for the absolute love of all that is good...how can I possibly live for one minute of any day without thinking of losing my baby. I cry, when I am alone, at the fleeting thought of our days without Liviana. She is part of us. We love her, we laugh with her, we imitate her saying "alright" in her funny, sweet little voice.
It really is such a deep, deep pain. I don't know what we are facing either, which makes it worse. I can handle the physical deficits. I will be by her side for every feeding, walk across a room...anything she needs. I am overcome with fear however about mental decline. I don't know how I will handle Livi not being "all there" mentally. I want her to know love every minute of her day and I am fearful that she won't be able to feel that love as she mentally declines.
I want to tell everyone I see about her, despite me being a somewhat private person. I want everyone to know that amazing face, those big eyes and those long, dark lashes. I want everyone to hear her sweet voice, see her kindness and how she takes care of her little brother and watch her grow. How, how, how can we possibly live without her. I want to scream as loud as I can, "This isn't F------ fair". I am wasting away inside as I wait for what comes next and live this nightmare for Liviana. I would give anything and everything for her as long as I could still be a mother to my kids. I have actually thought that if I could give my legs and just be a half a person I would still be able to mother them, hug and love them and she would still be here.
Blah...dinner is waiting thanks to some amazing, wonderful people from our church. I don't know what we would do without all of the people in our lives, whether they have known us for years and years, are family, are long lost friends or our new family at church. No parent should have to go through this and I would give anything in the world for Liviana to not have to go through this.
Thank you from the bottom of my heart for all of you.
Recovery Mode!!
5 months ago
Posts
20 comments:
Oh Amy I hurt for you from the bottom of my soul.... I really really wish I could meet her and I mean it, If you need me for a week I will be there to cook, clean, keep up on laundry, watch the other kids so you could have more special moments please please if you need help call me, I'm so sorry I haven't been keeping up with all you girls but I am here if you need me
Amy. I swear, if we get the money, I will skip WPPI and I am come there. I will sleep on the bathroom floor if I have to but I will cook for you, clean for you. I'll do anything you need just so you can spend more time with your children. I swear it. If I can get out there, I will be there.
Dear Amy...
You are not alone in this, and even though I cannot imagine the pain and fear you're feeling, I am right beside you. I love you and I will be there for you too, you just say it and I will fly upthere as well.
Love,
Fer
I think of you EVERY day. I cry reading this TRYING to imagine where your head must be. When you need me... let me know.. ill be there ASAP. And im not kidding. Ill be there faster than your next door neighbor! I love you! I love Livi! And I pray for you and your family DAILY even though I may not have been the praying kind. I pray for a miracle.... for Livi to be fine... for the kids to get to grow with their sister and become aunts and uncles down the road! I hurt with you, i truly do. XOXOXOXO
Amy I can't put myself in your place but many, many times more than I want to count we came so close to losing Ava as she fought so hard for her life. I can tell you my fears, feeling of loss, and heart aches lessened when I gave it all to God. I know it sounds so easy and yet So very hard to do. I prayed almost by the minute that if Ava wasn't able to stay here on earth that I would do all I could to make as little time as she had on this eath the best it could be for her. AND believe me that is extremely hard to not only say but do. As soon as I believed in my heart that I gave my hurtful feelings to God I felt at peace with what may lie ahead. Don't give up your hope and faith. God still does Miracles. You know that best. Don't feel defeated. You guys have been on my mind a lot lately. I wish I knew why complicated things have to happen to children. I don't get it. I do know that there will be answers someday. I hated when people would give you their 'comforting' words..."It is God's plan." THAT was the last thing I wanted to hear. So from one Mom to another... YOU WILL GET THROUGH THIS. You are a very strong and wise person. Livi is an amazing little girl. Cherish her!
Amy, my heart literally breaks for you several times a day. I cry for you. Though we have never met, I feel like I've known you and your beautiful family. I wish o had some wisdom something I could say to help you, but I don't. I am so sorry for you, for Livi, it's not fair! Its not right! If i can ever do anything for you, please let me know. Your always in our thoughts and prayers!
Amy, I am without words tonight. Please know that we are praying faithfully for Livi and your family. I am heartbroken and am here if you need anything.
Jessica Singletary
Amy, I have been praying for you since I first read about this and can not imagine the rush of feelings you have been having. Please rest assured that they are normal. That grief, loss, fear, doubt, tired.... they are all NORMAL. You know that all of us "girls" are here for you. And yes, we will do ANYTHING!!! You just need to say the word.
Praying for you tonight.
This is my first visit to Liviana's blog, I was directed here by a post on Facebook. This has touched my heart and it is breaking for you and your family right now. I lost my son Jaden to CDH in January when he was 15 days old. I can only imagine the joy you felt when Liviana defied the odds and conquered that horrible defect... only to be crushed by this most recent news. I wish that I had some words of wisdom for you but I know that nothing I say would be able to ease your pain. Just know that my thoughts and prayers are with you.
Jamie Morris
Livi is absolutely gorgeous!! You've done some amazing work photographing her! (although, any pic of her would be beautiful!) I can almost hear her saying "alright!". Too cute. I have a 2 1/2 year old daughter as well. I cant imagine the pain you're feeling. A child will always feel their mother's love, dont ever doubt that. Day at a time. <3
*hugs*
I am so glad you have people around you to help ease what ever little burden they can. Every little thing someone around you is able to do is one less thing for you to worry about, take time away from Livi or the other kiddos to do. We are all sending our love to you, every day.
Amy, I was an avid reader of your blog when my son Rafael was first diagnosed with CDH in the spring of 2009. Unfortunately, he lost his battle, but your story was among those that gave me a tremendous amount of hope. And now, your story has changed once again, as stories sometimes do. There is always hope, always. Even if you need to shout it from the rooftops to help yourself believe it, know that it is. Ride the waves as you must, know that those who love you ride alongside you, and through it all, Livi knows she is loved. So, so terribly sorry.
Amy, I cannot believe all of the trials your family has faced, and now to be presented with the greatest of them all....I cannot imagine. My heart aches for you, your family, and sweet little Liviana. Wrap yourself in those you love and I'm here anytime. I'm so very sorry you're going though this. It's not fair.
I would warn you that sometimes my comments come out in what can best be described as a verbal upchuck, but you know the deal...
The morning I found out I bawled, called my husband, bawled some more. I went on a walk with my neighbor, let some sailor words fly and got angry, real angry...for you, for Liviana, for Brad, for her siblings who don't even know what is to come. Why HER? Seriously. She makes it through birth, she makes it through surgery and the ensuing days. Then this? Really? REALLY?
And I know that I haven't even met her. I have never held her, gazed in those gorgeous eyes. I've never heard her sweet little voice. So it is completely unimaginable to me the anguish you must feel at times. The hurt, the gut-wrenching pain. The overwhelming fear. I'm sorry, I know I'm supposed to be comforting, to talk about hope, etc. but you know what...do not feel you need to be strong all the time. You don't. Get mad. Go outside and scream at the top of your lungs. Punch something. Throw something. Sometimes the anguish will propel you as much as the hope will. And we all feel some that too, so you're in good company.
Right now while she is sharp, while that light is brightly lit in those eyes, while she is connected to you, to Brad, to the kids, this is when you need to outsource whatever you can. Cooking, cleaning, etc. Let it all go. You know better than anyone that just sucking in every second right now is what is the most important thing. So if people offer to help, let them help. It is how those of us helpless feel less so.
Is there anything they can do since she hasn't had a huge decline yet? Bone marrow? Stem cells? I've been reading up and it seems there are trials for those who haven't had a huge onset of symptoms.
My heart aches and breaks and it sooo isn't pity you need. You need a bunch of people pissed off enough that this is happening that it doesn't have to happen. That kids and families don't have to go through this. So please let us know if they are saying she is a candidate for something. And please open an account so we can donate for someone to clean, for medical bills, for take out, for whatever you need right now.
I know it is not your job to make me feel better by letting me do something, but I would so appreciate it if you would.
---awkward as always,
kara
Amy- My heart breaks for you and your family. Please know that I am praying for you and Livi. She is precious. I lost my little girl Ella to a neural tube defect almost two years ago( wow to write that is seems like just a few months ago) yet i cannot imagine what you all are now going through. I pray for a miracle but also for yalls peace during this time, a peace I know personally that only God can provide. If you need anything else from us please ask.
I keep coming here and starting comments, but then erase them because nothing seems to say it right. I am so sorry that this is happening. It is so not fair. Livi is amazing, and I know that you'll make every minute of her life full of love... She should have a birthday party every day! You and your family are in my prayers. Please feel free to express yourself in any way you need to. Let us know how we can help. HUGS!
Amy, I am so sorry to hear of Livi's diagnosis. It just doesn't seem fair. I hope you are able to find peace with it and enjoy your beautiful, wonderful daughter.
-Kellie, Carter's mom
Hope, Faith, My prayers - they are with you. Profoundness is not my strong suit I'm afraid but it makes heartache and love for you and your family no less....... You and Livi, Brad and your tiny people are never far from my thoughts.....
Amy, I know you through a couple mutual friends and have kept up with your family on the blog. I thought that I would be able to say something easily once I started but nothing comes to mind except that I'm sorry.
I'm sorry that your little Liviana is going through this and I'm sorry that you have to too.
I have a pretty strong faith but your story,along with others, always makes me question Him. Like why a child? What did they ever do to deserve this? But I always go back to him because he is a constant.
Your baby is in my prayers.
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