Our son was ran over by a train

And yet, as truly terrifying and traumatic as that event was it isn't the first, or most, traumatic event we have lived through.

And saying that, writing it, just makes it all feel that much more unfair.

I don't want to go into details here as we fully intend to take legal action, and honestly it is still too raw to comfortably recount. But in that instant, all I could do was scream for mercy, for grace to save my baby. The very thought of losing another child shook me to my core. Watching not even inches from him with no ability to stop what was happening is forever ingrained on my mind. Just as poignantly as the moment the doctor told us that this was the worst thing Lucy was dealing with (having watched her entire journey over the summer) and he would do everything he could to help, but this wasn't good.

Or the moment the doctors laid Lucy in my arms before turning off the ventilator.
And the paralyzing fear of it all rushed in.
But our son, our Baby Isaac, he lived.
And I truly believe that his sister was there with him, protecting his tiny body from the crushing weight of the train.
Sparing his life.
Knowing that her baby brother couldn't leave us just yet.

Thank you, Goosey, for continuing to be the very best big sister and protecting your brother.
We can barely make it a day without you here, but knowing you are there for your Baby Isaac makes it just slightly more bearable today.

Ike embracing his guardian angel sister. This photo was not staged.
I wholeheartedly believe he felt gratitude towards her and this was how he could express it.

Lucy's final resting place

It occurred to me that we never publicly made known where Lucy's final resting place was. And so, I thought today- on the thirteenth month since she has been gone- that I would share it with you.

Lucy's death was unexpected. There was no buffer, no final days, no warning. I don't know that I can say sudden- as we had about an 8 hour window from the time we knew it was bad until she was given her last breath. In that window of time, her final resting place wasn't even a thought. But before we left the hospital, we had to make a decision. It took me less than a second to know.

Lucy was cremated.

The very idea of trying to preserve a body that had killed her from the inside out, burying it in the earth, away from me. It was never an option. Ever. The first two-and-a-half years of her life, she never slept more than a room away from me. Really 99% of that time she was at most a few feet from me. So to imagine her eternal sleep several miles, at best, from me... I couldn't do it.

I carry a part of her with me, everywhere I go. Around my neck.

The majority of the rest of her ashes are inside a panda.
A panda I'm sure you all have seen.

When I began to look at urns, nothing suited what I wanted for her. They were so hard, cold, boring. A couple of months after she passed away, I was at the bank with my mom. Through a serious of unusual circumstances Lucy came up and the banker mentioned that he had lost infant twins. Then he showed me a photo of his older three children holding their baby brothers- two build-a-bears. I knew instantly that that was what I wanted.

I wanted Lucy to be with us.
Capable of being held. Talked to. Cried with.

And so the search began for a bear that represented our Goosey. A goose was, naturally, our top choice but it didn't exist. I found a panda on their website, but unfortunately it had been discontinued. We contemplated the Hulk bear because, well, "Hulk smash!". But I just wasn't completely satisfied. A desperate call into corporate and they were able to locate a panda for us.

The kids were all involved in the creation of her panda. They did the heart wish. They helped stuff her (after minor surgery to allow the ashes we had brought with to fit). They brushed her and cleaned her. We added her amber necklaces that I had been wearing. Our Goose had finally found a resting place, right at home where she belongs. With us. As for the rest of her ashes, and maybe even this panda, I will have the children spread with me when I am once again joined with my baby girl.

Fly high, Goose. We all love you and miss your sassy little soul.

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. 

One year later: Mortality

One year ago today we thought our Goose was days from leaving us.
I stood, crumbling on the inside, as our surgeon told us that he was going to do everything he could but we had to find the source or it was all for not.
We were just one month into a battle against cancer, a battle we had been assured would be won.
She had a 90%+ survival rate.
We had barely started that journey, and here we were.
Facing the possibility of losing our child.
I was not scared before that moment.
I knew my girl was weaved from a different thread.
She wouldn't go down without a fight.
That wasn't her style.
But this was different.
It felt like reality crushing down on me.
My invincible girl was, perhaps, not.
The nearly 24 hours of uncertainty that passed from the moment Molitor uttered those words were, to that moment, the worst of my life.
But in dramatic Goose fashion she showed us what we knew to be true.
In the middle of the night, naturally.
Because clearly she didn't fit a mold.
My Goosey's invincibility level was rising.
She was lulling us into a false sense of security.
A confidence that set us up for an even harder fall just 4 months later.
4 months and 3 days later when I expected a repeat.
Goose just being difficult.
Keeping us on our toes.
I never dreamed that the worst-case scenario she had triumphed was about to become a brutual reality.
Just this time in hours, not days.

So here I mark the one year anniversary of realizing that we could in fact lose a child.
Our bubble was being poked that day.
In the coming months we would see that bubble repaired and reinflated before ultimately bursting.
Taking our Goose in its wake.
And reminding us that there are no guarantees in this wretched world.
My child, my baby girl, through all her triumphant battles was still merely mortal.

Just 4 days later, June 25th,
back on the 7th floor out of the PICU.
Shooting us with her PICC line,
showing us there was no holding her back.

A slow fade

And so it begins.
I can't blame others really, life moves on.

I know it doesn't mean you have forgotten her.
But the pain of every Friday morning.
The powerful sting of each 24th.
A never-ending string of anniversaries.
All mine to bear.

And although I can accept that I cannot change what has happened.
The diagnosis.
The way it all fell apart.

Her death.
The pain lingers, every day.
Seven months later it may be softer.

Not as crippling.
But the fact still remains that I am here and she is not.
And every 24th is yet another reminder of the life that was stolen from my beautiful baby girl.

One year post-diagnosis

It has been one year since our world stood still as the word "leukemia" timidly squeezed passed the ER doctor's lips, coaxed out by our begs to just tell us what she knew. I can remember standing there while my insides just crumpled. Looking at my baby girl, dreading the thought of her leaving this world, and so confused by what was happening in our lives. We were simple people. This, cancer, this life, it belonged to others. Not us.

And then came the parade of reassurances.

She is the perfect age. How can that even be a thing? No age is perfect for cancer.

Her numbers were good.. for being only the right amount of bad.

She was going to fight and win, they assured us.

It was going to be a hellish two years, but she would come out on the other end of it.

She would be stronger.

I didn't want this to be a big deal. I didn't want to be one of those "moms". I created a private group page instead of a public page. I didn't start a blog. I gently whispered to those closest to us what was happening. I intended to drop our heads, strap on our boots and trudge through the next few years without disturbing anything or anyone around us.

But here we are.

One year later.

Back to this day.

Without her.

Half a year

Here we are.
182 days.
26 weeks.
6 months.
Half a year.
Already more than a 1/6th of the time that she even called this world home she has been gone.
Gone.
Just a memory playing as I walk through our home.
Remembering her spots.
Her goofy antics.
Her favorite books.
I'm adjusting.
Going longer but crashing harder.
Searching for the purpose.
Replaying every minute.
Second guessing my every action.
Wondering what moment sealed her fate.
Worrying that I will never know where I failed her.
Just willing there to be a reason for me to be counting up the days, weeks, months, years that my child, my baby, has been gone.

I love you, Sunshine.

There isn't a single day that goes by that I don't wish I could change all of this.

That you could be here with me.

Home where you belong.

Be with me, Goosey.

I need you.

Please do.

Do I, don't I?
Should I, shouldn't I?
Please do.

If you see me out and about, and you aren't sure whether or not to say anything.
To mention Goose.
To make eye contact.
Please do.

I may freeze.
Actually, I can pretty much guarantee it.
I may smile.
Nod.
Give the automatic, "I'm doing okay."
It may just be a simple, "Thank you."
I might cry.
But on the inside, you are restoring my soul.
You are relieving my greatest fear.
You are pulling me back from the emotional cliff I find myself teetering on daily.

Please.
Say something.
A smile.
A knowing glance.
Anything.
Reassure me that you still remember my feisty little Goose.
Because wading through each day as she seemingly fades from people's memories, it's torture.
And every day I trudge on, resenting the world for just moving on.
Wanting to scream to everyone all the injustice that has been dealt to me.
The torment of continuing on without my baby here with me.
Seeing all the little children that she should be playing with.
Watching them do all the things that she should be doing.
Devastated that she was denied all of this.
Hoping that today is the day someone pulls me back.

So please.
Be the one.
Remind me.
Save me.

I miss you, Goosey.
Every single day.
Every minute.
With every breath I take.

Scales tipped

158 days. That was all the more time Goose was given on this earth once she was diagnosed.
Today it has been 159 days since she was stolen from me.
The scales have now tipped.
She has been gone longer than she was even given to fight all the shit that was thrown at her.
And I continue to sit here and ask why.
Why her?
Why us?
Why now?
Why couldn't he have waited until she was older if he was going to do this?
Give us more time to know and love Lucy.
Not even three years isn't fair.
It never would have been fair really.
But maybe more fair?
There were so many things that she never got to experience.
So many things she should have done and seen still.

She never got to attend preschool.

Attend a sleepover.

Have a school photo taken.

Had a crush.

Fallen in love.

Married.

Had a child.

Grown old.

No.

She only got 1085 days on this earth.

158 of those fighting cancer, fungus, bacteria, viruses, and all the poison required to cure those.

And now she has been gone for 159.

I love you, my Goosey goo.
You will forever be my baby girl.

The bad days

In the past 5 months I have to come to realize I have 2 types of days.
The ok and the bad.
The ok make up the majority of my days. I wake up, work out, come home, make it through my day doing what needs to be done. Think of my baby girl, take maybe one or two quiet moments. But overall, I am ok.
Then there are the bad. I start my day off aching. My chest feels concave for most of the day. A physical  pain accompaying the harsh emotional pain, I suppose. Everything sets me off. I'm short-tempered, because dealing with everyone else and their petty problems when I should be helping my baby fight cancer just pisses me off. Everything reminds me of my Goose. And it's not happy. It's more gut-wrenching. I get so angry that she isn't here. I resent my other children because they are. I spend all day waiting for the moment I can just go to bed and wake up in a different reality.
Today was bad.
I can only hope that tomorrow will be better.
I settle for ok.
Ok is good.
Good feels wrong.
But bad.
Bad just makes the pain feel raw. New again.
I hate the bad.
But not nearly as much as I hate the fact that my days are empty without her.
Never great again.
Never able to reach their full potential.
It's just wake up, breathe, go to sleep. Repeat.
And pray it's not a bad day.

I wish you could hold me on these days, Sunshine.
I need you here.

Resolving to be content

20 weeks.
139 times now that I have had to wake up to the reality that one of my children is gone from this earth.
It has been 20 weeks since we waited, begging God to spare our baby girl. Willing our surgeon to perform a miracle. To save her.
I am struggling to believe that we have nearly reached the point where my baby has been gone longer than she was given to fight.
Since Goose's autopsy I've had to accept that there was no saving her. There was no chance that all the prayers and all faith in the world were going to change her fate.
So here I am seeking contentment.
Not in the loss of my baby, because that, it won't ever happen. I will never be able to turn to God and tell him I am okay with this.
To those who have walked this path and can- great. But I struggle to believe that those  proclamations really match the heart.
And I'm not willing to fake that.
But my life, it's continuing on.
And I have to be okay with that.
I have to learn that being with my family, my friends, having fun it has to happen and it's okay to smile. To laugh. To enjoy myself. I have to be content with continuing on in this world.
And in that, I can fake it until I make it if need be.
And I have to believe that that doesn't  mean I miss my Goose any less.
I don't love her any less.
I haven't forgotten her war.
I haven't forgotten her many victories.
I will never forget every painstaking second of her final battle.
And I won't.
She has always and will always be my baby girl, my little Sunshine, my Goose.
And with her always in my heart, never off my mind, I am moving forward and resolving to be content with the days I have left here.
20 weeks down.
Only a lifetime to go.

I truly believe she knew I needed a lifetime a closeness with her in the few years she had.

The Autopsy

We met with Goose's primary doctor this afternoon to go over her autopsy.
That sentence alone makes me sick.
The fact that today is the 4 month anniversary of the last time that I looked into my baby's eyes intensifies the feeling.
Four months ago we thought our baby had beat it all again and was on the road to recovery.
Four months ago I never would have thought that within the next 24 hours my baby would be gone.
And that four months later we would be learning what killed her.
I knew that I needed this.
I knew that it was critical for all the questions swirling in my head to be answered.
I knew that not knowing would send me continually down the rabbit-hole.
And I know now what we need to focus on.
What we will spend the rest of our lives advocating for.
To bring her justice.
To make her death mean something.
Anything.


The good:
-Nothing we did could have stopped this. {I realize that doesn't sound like a good, but really it is.}
-"Catching" her leukemia sooner wouldn't have changed anything.
-Finding out she was bleeding any sooner would not have saved her.
-When she died she was still cancer-free. {Small victory, I suppose.}
-This happened fast. Very fast. Which we all knew, but to know for sure that her death was not long-suffered helps. Sort of.

The bad:
-It was not merely a single artery that was bleeding. Her body was clotting and bleeding everywhere. Many of her organs were losing blood supply and turning necrotic.
-She had acute endocarditis. Her heart valves were septic. We thought the sepsis was "under control", but it apparently was not. And therefore her heart was distributing bacteria throughout her body unbeknownst to us.

The takeaway. While necessary to treat her cancer- chemotherapy killed our daughter. There is nothing ok about that. We now understand that the risk of death by infection in an ALL patient is like 1%, but our Goose, she was one in a billion. I have a feeling that she may be the only kid to have ever and who will ever battle not only cancer, but a disseminated fungal infection, cdiff, sinusoidal obstructive syndrome (VOD), corynebacterium sepsis and a whole gamut of other infections in just five months.

Shared before, but this photo was taken one year ago tomorrow.
The 24th of February.

9 months, 4 months

Here we are.
Nine months post-diagnosis.
Four months [almost] since she was taken.
How can so much happen in such a short span of time?
How can so much change?
I look at Goose's treatment history, her photos, and I just cannot make sense of it.
Why her?
Why us?

We should still be counting down to the end of treatment.

Anxiously awaiting her last days of chemo. 

Taking her on a make-a-wish trip to celebrate all that she has persevered though.

Counting down the days until preschool. 

But here we are.

Four months out from the last moment I got to look my baby girl in the eyes and tell her how much I love her, how incredibly brave she is.

Four months out from the sequence of events that I still can't grasp.

Four months out from the moment that changed everything.

And so the counter runs, and it will until the day I can join my baby again.

17 weeks...

Nearly 4 months...

Too long.

And yet, not long enough to be relieved of this pain.

The last time my baby girl would play with all her siblings, ride her scooter, be at home.
The evening before her final admission.

Photos from the type of milestones that, in a right world, I should be reminiscing about.

After finding out that our puzzle-piece, very planned and perfectly executed #4 November baby was our sweet Goose.

4 months old

9 months old

Home

Using a hair clip I gently twist the lock, it just feels like something that needs to be done gently. As soon as I open the door I breathe it in. Goose. My baby. The scent just fills her abandoned room. I don't go there often, only when enough "things" have gathered and I know it is time to. Her things. Her animals. And dolls. And toys. Clothes. Blankets. Everything we have left of her physical life is here. Waiting. Who knows for how long. Months. Years. Forever? I'm not sure there will ever come a day when I feel it is ok to bother it. The thought of packing any of it gives me mini panic attacks. The kids will be ok to share rooms. After all, it's Lucy's room. Even to them. I worry the day may come though, when I open the door and I won't smell my baby. And I don't quite know what that day will mean. But for now I can say with near unwavering certainty here is where I am going to live out my days. Because here is Goose's home. Here is where I can go and smell my little girl's presence. So here I will stay.

Passed away

Something has been bothering me lately. Well really that's an understatement- might be better to write a post on what HASN'T been bothering me. In the past few weeks, on the rare occasion that it comes up with complete strangers, it has become second nature to say Goose passed away in October. Passed away. It's a perfectly nice term for old people. People who lived a long, full, life. They passed in their sleep, They passed peacefully. They passed surrounded by loved ones. Passed away seems natural. Goose didn't pass away. Her body pulled her under. I am almost certain that her soul and her mind were 100% not ready to leave this world. But her little body was just so broken. There was nothing that can make me think that anything that happened in that 12 hours was peaceful or calm. I cannot even begin to fathom the pain my baby girl was in. But what else can you say? Her body murdered her. But, honestly, I think that might be a bit brash. Random strangers don't want to know what really happened in that half of a day. In fact, I'm sure that most here don't even know. I'm not sure that anyone ever will that wasn't there. But, please, know this. My baby girl didn't pass away. She was stolen from this world, and I'm not sure there will ever be a time when I can accept that and be okay with it. Ever.

There is nothing I don't love about this photo.
Her signature rolled eyes and wry, little smile.
She was a fighter.
My little warrior princess.
My Goosey girl.

Potential new shirts

Andy and I have designed shirts for ourselves and the kids. We are having them printed through the same company that did the original "I wear orange for Lucy" shirts. They will be black and made on the American Apparel shirts, available from Youth to Adult sizes, same as before. I wanted to check to see if there would be enough interest for us to open this up as a Booster campaign to allow others to also purchase the shirt. It would be strictly as an ability for others to buy NOT a fundraiser for Goose at this point. However, to open it as a Booster page we would have to sell a minimum of 50 at the $20 point. Before I go through that process, I want to make sure we could make that minimum. Otherwise, we will just purchase the shirts on our own through CustomInk. Please take the survey below, and in about a week I will see where we stand! Thanks!! :)

Also, for any interested we have 6" window decals. INFO HERE

Here is the shirts. The fronts may change slightly, but still, same general idea.

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World Cancer Day

Seems an odd day. Maybe just to me. Maybe to others who have lost someone to the jerk that is cancer. To me, days are about celebrating.  I have nothing to celebrate when it comes to cancer. To those who have fought cancer and won, perhaps. I get it. It is a day of celebration, of triumph. If I'm honest, I'm jealous. I would never wish ill on anyone, but I can wonder why my baby girl didn't get to be so fortunate. Why she didn't get to come out on the other side of this horrible diagnosis. I can only hope that one day, some way, some how we can make her death mean something more. That her loss can bring life to those who find themselves forced into the same nasty war that she was. 

From her healthiest stay this summer,
during Childhood Cancer Awareness month.

Feeling my faith swirl the drain

I'm becoming convinced that Facebook is out to be the death of me. Someone really needs to get on the ad department about using some better sense with a profile that clearly belongs to a grieving parent. Like the constant ad for a personalized children's book where they use the name "Lucy" to try and get me to click. Cruel. Or the suggestions for articles that just feel like a spear to the side. It seems to be a common theme, or maybe I am just more acutely aware of it- miracles, guardian angels, faith, blah blah blah. A man crushed between two cars- his guardian angel was with him.... teenage girl in a crash, no chance of survival but they prayed. Oh, they prayed.  And God sent a miracle! I get that these things literally have nothing to do with Goose's case, but to parents who prayed and had people praying around the world, constantly, it feels like a direct jab at my faith. I must not have been pure enough of soul for mine to matter. I don't read my Bible daily, or evangelize to every person walking by, so I haven't logged enough points to earn a miracle. Her guardian angel must have been out partying,  dropping the ball, something because my god did they fail. And it makes me mad at God. It makes me wonder why I've spent my life believing that if I just have faith and trust Him, He will always provide. Because taking my baby girl from me. That doesn't feel like providing. That feels like having the door slammed in my face. And it's left me wondering why even bother. I can only hope that Goose is truly resting in a place as beautiful as Heaven has always been described. But right now, I'm not ready to believe that there was a greater divine purpose here.

Because no post is complete without this angelic face.

Twelve weeks

As I write this, it has been exactly 12 weeks since Dr. Egan reported back on her CT scan. Twelve weeks since he said that he was going to do his best, but this was "bad", the worst thing she has had to battle.
Twelve weeks since we were thrown a curveball that should have been thrown to someone else. Murderers, rapists, abusers... anyone but her.
Twelve weeks since I stood by, frozen, listening to her doctors debate her stability and how far they could move her. Interventional radiology or the operating room? They wanted both but they were on opposite sides of the world it seemed.
Twelve weeks since I waited, praying to God that Andy would make it to the hospital.
Twelve weeks since her surgeon walked into the room and, for even a moment, I had hope that if anyone could save her it was him.
Twelve weeks since I held her soft, fragile little fingers in mine, begging her to keep fighting.
Twelve weeks since I've felt her silky, blond hair, finally growing back in from what should have been her hardest trial in life.
Twelve weeks since my children had to kiss a baby sister goodbye.
Twelve weeks since I cradled my princess in my arms for the last time as she left this horrible, unfair world.
Twelve weeks since my heart was ripped from my chest and left in room 6115.
Twelve weeks.

The last photo I have of her perfect, unobstructed, little face. (October 5th)

Do they even notice?

Do they even notice? Do they not realize someone is missing? Do they not care? We have lived here for nearly three years surrounded by the same people. She toddled down these sidewalks, rolled by in her stroller to the park, cruised along on her scooter and bike. Right in front of you. Her blond hair peeking out from under her helmet. She screamed, laughed, giggled, babbled on... are you not even aware of her absence? These people that live not even a stones throw from the home she lived in. I cannot understand it. Do they even notice?

Please don't forget that she was here, that she existed. Life moves on, I get it, but please just remember her. She was too awesome of a person to have not left an imprint on this world.

Regrets

So many. Every day I try my best to keep my mind and body occupied because if I don't I fall into the hole. The hole of continual anger and what-ifs and whys. And I get so mad at myself for all the things I cannot change. That I cannot take back. I am so mad at myself for every whine and need to make a Target run to "get away". Because every minute that I walked out of that room was a minute that I cannot get back with her. A minute that I wasn't there for her when she asked for me. A minute that I wasn't holding her hand in those last weeks, rubbing her soft hair, letting her know how brave and strong she is. Every one of those minutes are gone. Every night that I left is another night that I didn't get to sing to her. I didn't NEED to recharge. I didn't NEED to tend to the other kids. They are here. Now she isn't. Regrets. So very many.