How do I live?

How do I live without you?
I want to know,
How do I breathe without you?
If you ever go,
How do I ever, ever survive

One of my favorite "love" songs, and ironically the first and only song I heard this morning. And I really do wonder, how am I living? I'm not even sure I could fully call what I am doing living, more surviving. Desperately trying to occupy every second of my day. Holding my shit together when I'm out of the house because to face reality in front of others is just too much. Every moment, my baby is on my mind. Sometimes right at the forefront of every thought and action, sometimes lingering in the background as I think about how these moments would be different if everything hadn't changed. 

My Lucy should have turned 4 yesterday.

And as I reflect on the time when each of the older three turned four- how interactive and aware they were. The little people they had become. The opinions they had formed and would now readily share. Who could she have been? What could she have done?

She was already such an amazing human. So completely herself, not working about conforming to anyone's idea of who or what she should be. The energy with which she approached every day. Never giving up. Be it as an baby, demanding attention and controlling the rest of the family. Or as a headstrong toddler- dominating over her older siblings. Or, for the brief time she was allowed, as a big sister. Finally with a little minion of her own to mold. She didn't even realize just how courageous she was. The battles she had to fight. The pain she had to endure. She didn't whine or protest. She just went to war, doing what her body knew it had to do. The word is over used, and I am a primary suspect. But my daughter, my Lucy, was truly amazing. 

And I hate that the rest of the world may never know that.

May never know what she had the potential to accomplish.

She would have moved mountains. Without a doubt.

My sweet Sunshine, I can only hope that the party they threw for you in heaven was as wonderful as the one I would have given you here. I don't know how I live without you. I'm not even sure most days that I want to. But, to give up would be no honor to you. So I press on. 

Happy 4th birthday, princess.

Our last birthday together. 

My first trip around the sun without you.

My Lucy,

Big Mamas. Goosey girl. My Sunshine. 

There are no words worthy of the pain I feel without you here. We should be planning your fourth birthday. Going on preschool field trips. Going to Target for no reason and getting Starbucks or milkshakes (shhhh, just don't tell daddy!) you should be chasing Isaac around, helping keep him entertained while the bigs are at school. There are so many things we should be doing. I miss you more than any words or actions could ever express. My heart will never be whole again. I do not know how I have made it the past 365 days. I have no idea how I will continue for however long my body can sustain on this earth. I can only hope that you are truly happy and free. And that one day, you will be in my arms again. You are the bravest and strongest little girl I will ever know.

I miss you. I love you. 

You are forever my baby girl.

The last birthday she would celebrate here on earth with us.

The beginning of the end

It's been one year since I have been able to hold my living baby girl in my arms.
One year since the word "Momma" has passed over her lips.
One year since we have talked non-sense or giggled over something ridiculously silly.
One year since I've heard her sweet little voice cry out "Baby Isaac" as he arrived back at the hospital.
One year since she has, I swear intentionally, annoyed me by allowing the movie she picked to get 5 minutes in before deciding she could not bear to see another second of it and I had to change it.
One year since I have crawled onto the horrible foam excuse for a hospital mattress and snuggled her against my chest.

We had come to accept that cancer, clinics, hospitals were going to be our new life.
We had accepted that this journey was clearly not going to be a simple one for her.
She wasn't going to get the "cake-walk" treatment path that some kids seem to get.
But she was a fighter, born feisty for a reason.

But then it happened so fast, we didn't even get a chance to warn her.
To soothe her.
To promise her that everything would be ok.
We thought it was.
We thought it would be a few days, a week, and she would fight back.
That was just who she was.
This was just going to be another notch on her belt.

If I had known I was saying good-bye it would have been different.
Everything would have been different.

But I didn't.

Ten months

The tenth month.

It's been harder this month as most kiddos Goose's age have headed off to preschool. Nieces/nephews/friends have safely passed the 2.5 mark and celebrated third birthdays.
Life has continued on, and I shouldn't begrudge others for the peace they have been graced with.
But she also shouldn't be gone.
Maybe this week (month... forever....) -for me- think twice before you vent.
Because what feels earth-shattering to you, someone out there would give the world for.

The setting may look familiar, but some of the "outtakes" showcasing our goofy girl's personality.

I'm glad it was rarely a one-shot photo with her. I have hundreds of "other" photos that captured moments that may have seemed meaningless then but are so precious to me now.

A bittersweet anniversary

A year ago today I was laying in our "suite" ready to take a nap when our doctor came in and delivered the news that her bone marrow aspirate had shown no residual disease.
She was cancer free.
Our amazing little girl had achieved what the doctors were starting to think would be impossible.
Not only was she cancer free, she was healing amazingly, her swelling was going down to where she was starting to really look like "Lucy" again, her sassy personality still shining through- resilient as ever after almost 2 months stuck in a hospital.
And now here I am.
Just one year later.
With no Goose to celebrate with.

The many faces of Goose.

Nine months. Nine things.

273 days
39 weeks
9 months
Since I lost my Lucy.

It has been quite sometime since I have blogged. Life has been busy with the kids out for summer. And I sometimes feel like a broken-record and I don't want to just continually sing the same song over and over to people. But today I just want to share nine things, in memory of the nine months since my baby girl was taken, that reflect my heart and my iron-gated mind. Know that this is what is floating around in my head 99% of the time, and maybe 3 people have heard actual bits and pieces that have escaped.

one.

She had an absolutely beautiful name, Lucy Selah, and a personality-perfect nickname, Goose. Please use them. Our children have begun to use it more, while playing, while talking, not a day goes by now that I don't hear it half a dozen times. And it brings so much peace to my soul every time they do. Because it is a subtle outward reminder to me that they haven't forgotten their sister.

We almost didn't name her Lucy. We had known from the moment Zoee was born, that if we had another girl she would be Lucy. But when the day came we had acquaintances that were preparing to name their baby girl (due a little over 4 months earlier than us), Lucy. We sat trying to find another name that came close and came up with nothing. I am grateful everyday that we stuck with our original choice, because Lucy was a Lucy. No other name could have fit her more perfectly. She was our light. I have no shame in admitting that when Hansen's Middle of Nowhere album came out I was a fan. Particularly of their song Lucy. I never bothered to really comprehend the words they sang until I, too, left my Lucy. Unfortunately, not by choice and my baby didn't get to say goodbye, but the lyrics reflect my heart just the same.

The day that I left Lucy

A tear fell from her eye 

Now I don't have nobody, and I was such a fool

On the day that I left Lucy.

The day that I left Lucy she cried, then said goodbye

Now it's done, and it's over, and I am all alone

On the day that I left Lucy

Now I don't have anymore songs to sing

'Cause you were everything, everything to me

I didn't realize I felt this way, until that day

Today I'm missing Lucy, and you say that she's OK, I hope she is.

Now I don't have nobody and no one will ever replace...

My Lucy

I love Lucy, Lucy...

On the day that I left Lucy...my Lucy

two.

Talk about her. Talk about her from before she was diagnosed. About her journey. About how she has affected you. Nothing you say could upset me. (But please, don't test this with outrageous statements- see number six.) She was my everything (another blog post one of these days), and to not have her here is a pain that cannot be comprehended by most anyone we know. But nothing makes my heart soar more than to hear her name, talk about her journey or to laugh about her goofy antics. So please, if something is ever on your mind and you are trying to decide whether to say something or not- do it! Text messages, wall posts, comments, actual face-to-face conversation (abnormal, I know)- whatever form you like, please do it. I may not know how to respond. It may be a like, a yellow heart, a sunshine, a smile. But know that inside, my love tank is being filled every time.

three.

Remind me of my other children. I know how ridiculous that sounds, but please do. Gently. A lot of my struggle is remembering that I do still have four beautiful and amazing children on this earth with me. My head can be so consumed in what I have lost, that I forgot to relish in what I do still have. I am trying to be better, but there will always be room for improvement.

four.

Don't forget my husband. I know sometimes even I do when it comes to Lucy. All the time that I was granted with our baby girl while he was working last summer and helping care for our other four, was time that he wasn't. He struggles just the same as I do. He wants to hear his baby's name as much as I do. He needs comforting too. She was just as much a part of him, as she was me.

five.

Counseling. We are in it. I have been since December and Andy just started. It has been pivotal in our processing of the last year. For some reason, it feels taboo to say the word- counseling - like it is something to be ashamed of. I will find any other way to word that I am going, but the fact is I go to counseling to process the trauma of the last 14 months. It isn't some magical cure that I will be happy and stop talking about my baby. Sorry, never going to happen. But I can talk about her, look at her pictures, touch her earthly items left behind, and pick myself back up and rejoin the world with more ease. 

six.

Don't compare. For the love of all that is good and holy, unless you have felt the pain of being forced to walk away from your lifeless child, you do not understand what I am feeling. It is not the same as losing a grandparent, parent, pet, even a sibling. My kids, God-willing, will never know the pain I feel. They have a pain that is all their own, and we will help them to process that as it comes to light for them. But the pain of losing a child, especially one so young, there is no comparison. I will walk away from you, and there will be damage done.

seven.

Faith. I get it. I had/have it? But God is not a magical cure-all. He had his chance to prove that to me and he failed. You can hate that statement, but it is not going to make it any less true to me right now. Trying to continually shove him back into my life is not going to help. I will continue to push back harder. Does that mean I don't believe in him? No. But right now we are on a break. Let it be. If and when I am ready, I will cross that line back into church.

eight.

A piggy-back on seven really, but please stop referencing Job. I get it. I read the book (as a teen, mind you.) Maybe it is fine with Andy, I won't speak for him here. But for me, I swear the next time someone tells me to trudge on because look what Job went through, I may well punch you. With a fractured faith, throwing the story of a dude who lost everything but still came through ok is not helping. At all. If Satan is playing some game with God using me as their pawn, it is definitely not going to help the faith issue.

nine.

Continue to live like Lucy. She had a resilience that astounds me still to this day. She took the total shit-hand that was given to her, and smiled through it. Through counseling, family, good friends I can say that most every day is a good day anymore. Not a day goes by that my Goose isn't on my mind, that I don't miss her sassy little soul. But the good memories outweigh the bad ten-fold these days. Some days, like today, are hard. I break down as my mind automatically plays back that morning with no pause or eject button to reach for, the literal ache in my chest as my heart breaks, yet again, remembering what has been stolen from me. But I stand back up, send love to my girl, and I have to continue on. There is no choice. I will live today like my Lucy would have.

If only I had known what the next three weeks would throw at us.

Seeking a mentor

Can you help Andy and I?
Do you know someone or are you that someone?
We are ready to dive in on beginning a non-profit foundation in Lucy's honor.
We have spoken with her doctor and child life and think we have found a niche that needs filled that is dear to our hearts.
We have no intention of building this with anything but a well thought out and carefully formed foundation.
Clearly, this is new to us.
We would appreciate any and all help that anyone can provide.
If you have done this before and are willing to take the time to walk by us as we establish ourselves we would be incredibly grateful.