Tuesday, October 30, 2012

For those that asked.. here is an address :)

Hello everyone.  I have had multiple people say that they would like an address to mail ribbon, hairbows, hairbow clips, accessories for the hairbows, stickers for the children at Kosair, cards, and even a tutu for Makayla.  :)  Thank you so much!  The kindness through thoughts and prayers alone has been AMAZING (for my family, the children at Kosair, and myself).  We plan to go back to Kosair in December.  Thank you for your kindness.  Here is an address:

Dixie Pifer
c/o Lily Grace
8100 Cedar Brook Dr
Louisville, KY 40219

Monday, October 29, 2012

Lily's 2 month Angelversary and first hairbow trip to Kosair Children's Hospital

Lily's 2 month Angelversary: Today was a very emotional day with some great highs and a lot of emotional lows too. Today was the first time that we did the Lily Grace Project and took hairbows to precious sick little girls in the NICU and  PICU at Kosair. Lily passed away exactly 2 months ago today and today was the first time that I drove back to Kosair. It was the first time that I went back on that road to the hospital.. first time to enter that parking garage.. first time to go through the doors.. first time back in the NICU... first time back in the PICU.. and first time to see so many of the wonderful staff that took care of Lily at Kosair. So the word emotional is not even a big enough word for how I felt this whole day.

I was VERY emotional this morning as knowing that Lily passed away 2 months ago today is very hard for me to deal with and quite honestly.. even comprehend. My sweet Lily was worth every tear that I have shed and I bet that my tears could feel a lake from when I was pregnant and received her diagnosis up until now- 2 months after she became an angel. I just love my children more than life itself and to lose one of them is the worst feeling that you can endure.

Today we challenged everyone to do something nice for someone else and I hope everyone accepted and completed this challenge. I did. :) My family and I went to Kosair and not only did I take hairbows to the precious children but I also gave much deserved and overdue thank you gifts to many staff members. I know that some staff did not receive something but it was so hard to remember everyone's name that took care of Lily. I am grateful to every single person that took even one minute to care for my sweet Lily and I would never leave anyone out on purpose.... forever grateful! I'm just lucky to put one foot in front of the other sometimes so this was huge for me to actually get everything together, organize everything, and remember as much as I did without leaving anything home.. :) **Big HUGE thanks to my family and friends for helping with the hairbows and going today to give them out too. Thank you for making so many beautiful hairbows as I know each one was made with so much love and that love was passed to the children that received the hairbows**

So if you are curious.. this is how it felt: This morning.. just driving on the highway that would take me to Kosair made me extremely emotional and anxious. So sad and heart broken this morning. I talked about Lily a lot today (thank you healthcare professionals) and that did help me plus I cried even more (thank you again healthcare professionals)! So many tears shed and that was before lunch. So fast forward to my trip to Kosair.. I was actually okay but the traffic helped as a distraction until... I pulled up to the parking garage. I pulled in and I have never had an anxiety/ panic attack but I think I know what it kind of feels like now. It was hard to breathe like my chest was tight and I just cried.. and cried.. and cried.. like hyperventilating-needing to take your contacts out and clean them.. put them back in kind of cry. I lost it some more and some more.

Then I got on the elevator and I was okay.. walked through the doors okay too but my mind was on a mission for the hairbows. I went into the NICU first and the first room was the High Tech room where Lily lived for her first 5 days.. I started to no longer be fine at this point. It was so bittersweet.. felt at home almost to be there and so happy to give out the hairbows yet SO sad because my Lily should be here almost ready to go home. There was a little baby girl in Lily's old spot (#6 I think they called it) and seeing that spot filled with another baby was VERY hard. So I walk to #6 and the babies parents were there holding her. I tried to talk but I was so emotional and cried so much that it was hard to get my talk about Lily out. Let's just say that I received A LOT of hugs tonight. :) The babies Dad hugged me because I became a wreck. Then nurses hugged me along the way too and multiple other staff members too. I even got to see a few babies with the hairbows on and that just made my heart so happy.

So I pulled myself together and we continued to give out hairbows. Whew.. then I went up to the next floor to the PICU and I really lost it emotionally as I stepped off the elevator. That was INCREDIBLY hard because this is the floor where Lily lived her last days, where we lived for awhile essentially, where she became an angel in my arms, and where I left her in the arms of a nurse (Alison) after I held her for hours after she passed away. So this was VERY difficult to take in but I pulled it together and then I met with some EXCEPTIONAL staff that took care of Lily so I cried some more but... this was good for me.

You see.. I feel that the staff at Kosair really loved Lily. The staff kind of became a part of our family in a way because they were so much a part of Lily's life when she was alive and even when she passed away. I never was able to take Lily home or do many things that a mother should get to do for their child but Kosair helped me be as much of a Mom to Lily as I could be. They will never know how grateful I am to them. Thank you to everyone at Kosair who talked to Lily, touched Lily, loved on Lily, sang to Lily, gave advice to Lily's family, encouraged Lily's Mom (me) to get some sleep so she didn't get NICU/ PICU insanity, respected Lily's family, and took pure joy in taking care of Lily.. thank you! It was an honor to give out hairbows tonight and I hope it helped make other people feel just as good as it made my heart feel tonight.

I know that this doesn't make me better and who knows how I will feel tomorrow but for tonight on such a hard, hard day.. I have some peace in my heart. Even if it is for a few minutes or maybe one night.. I'll take it because I haven't had this kind of peace in my heart for 2 months. Seeing the staff and families appreciative or even excited for our hairbows made me happy and I like making other people happy. It made my heart feel somewhat better if that makes sense. Now I am still an emotional wreck for missing Lily but... doing good for others did something good for me. Thank you everyone for your support and prayers today! I'm done sweet baby Lily Grace with today's challenge!

Hairbow pictures for today's trip

Some hairbow bags and thank you gift bags for my first trip back to Kosair since Lily became an angel on August 29, 2012. My first trip back will be today October 29th and this is Lily's 2 month angelversary. Sad, sad day but.. we have 130 hairbows to give to sweet, precious little girls in the NICU and PICU for the Lily Grace Project (hairbows) and challenge (do something nice for others). Today is also Lily's 2 month Angelversary. We miss you Lily and love you so much!

Sunday, October 28, 2012

Lily Grace Challenge tomorrow...

The Lily Grace Challenge is tomorrow- On the 29th of each month we will do this challenge because the 29th represents a really sad date for my family and I.. Tomorrow marks exactly 2 months from when Lily became an angel in my arms. I just can't believe it. 

I'm trying hard to take this sadness and use it to somehow help or benefit others which is why I started Lily's page, the Challenge to do  something nice for others on the 29th, the hairbow project to make sick children & their families feel better for even a moment, and possibly the coat drive at my work.

I just wish I could do some of these things and have Lily alive.. A Lily FB page in her honor not memory, the hairbow project in her honor.. Not memory.. etc..etc..but that was not the plan for Lily. So instead of staying in my bed from depression I'm trying to use that energy towards good things because that is what's best for my kids and that's what Lily would want.

So whose doing Lily's challenge tomorrow? I am! My family and I are taking hairbows to Kosair for the first time tomorrow.. bittersweet day to make my first trip back to Kosair tomorrow since Lily passed away. I could use some uplifting prayer tomorrow. We go at 6 pm. Don't forget to click on events and select join to sign up for Lily's Challenge..

Are you doing something nice in memory of Lily and all other kids gone too soon?

Wednesday, October 24, 2012

Lily Grace Coat Drive..maybe??

Just posted this on Lily's Facebook page:  

We may be having a "Lily Grace Coat Drive" at work. :) Thanks for the idea Tammy. For those that did not see my post titled "Jackets".. I went to see Lily the other day when I became cold. My immediate reaction was that I needed to get Lily a jacket because I don't want her to be cold. Then reality slapped me in the face. So I wrote about that and people started giving me great ideas (i.e., co
at drive for work, angel tree, etc...).

I have ran a coat drive at my work for the last 5 years and this year.. it may be called the Lily Grace Coat Drive. If it gets approved then I will make a flyer based on Lily and how this coat drive is to honor all of our loved one's that have left us too soon. Each jacket donated will be in remembrance of someone you love and to not only honor them but everyone that has lost someone. You see.. we can't buy them jackets or even give them a jacket but we can give jackets to others... Just my thought for now.

I even thought about doing a toy drive along with the coat collection because it seems like a perfect thing to do. I need to get everything officially approved first. Also.. I would be interested to see if any other healthcare locations or businesses would like to do the coat drive (or toy or coat/ toy drive) as well. We could do a big Lily Grace Coat Drive and my flyer can list multiple drop off locations. Let me know if you would be interested. I could make the flyers and promote it myself.. you just need boxes and word of mouth promotion at work (the flyers that I would print would be for Louisville, KY locations but I could give you the template to add your location or to get your locations printed if you are in other areas)...  I'll let you know.. Share your thoughts..  :) 

Monday, October 22, 2012

Poems for Heart Parents...

Half of an Angel's Heart

it's a beautiful day up in Heaven. Jesus is rounding up his tiniest
angels, to go live on earth, and be born.

One of the sweetest angels says to Jesus "I don't want to leave, I
like it here, and I will miss you." He reassures the scared little
angel that everything will be okay, and that he is just going for a

He is still not swayed on this idea. So Jesus, kneels down, and
says "How about if you leave half of your heart here with me and
take the other half with you, will that be okay?" The angel smiles
and says "I guess that will work".

But the little angel is still a little scared. He asks "Will I be
okay with only half of my heart?" Jesus replies, "Of course you
will, I have other angels there that will help out, and you will be

Then Jesus gives the angel more details about his plan, he
says "When you are born, your Mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday."

"And when its time to come back to Heaven, I will make your heart
whole again." "Always remember, that you are not broken, just torn between two loves."


When I Became a Heart Mother.....

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick...
I thought, am I to blame?

I don't think I can handle this...
I'm really not that strong.
It seemed my heart was breaking...
As, I'd loved her for so long.

I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.

And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!

Will she require therapy?
What if she can't gain weight?
Alright God I can do this...
I will not curse our fate.

The feeding pump beeps, at 3:00 a.m.
It serves as my reminder...
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.

Another angel earns their wings...
and I run to my sleeping child's bed...
I watch her then, for quite awhile...
Bend down and kiss her head

Then I cry for the parents whose lives have been broken,
And I look to God wondering why?
Oh Lord, I just can't know your ways...
No matter how I try.

And yet, I trust You to hold her life,
And guide us through each day
My mind says savor each moment she's here...
But my heart whispers,

"Please let her stay".
From... pacing the surgical waiting room...
to sitting by her hospital bed...
From... wishing for a good night's sleep...to learning every med...

From wondering will she be alright?
To watching her reach out her hands.
With every smile, my heart just melts.. despite life's harsh demands
For all who see that faded line...I look to them and smile...

You see, my child is loved so much...
I would face any trial.
That same scar I trace with my finger...
It's the door to her beautiful heart

I never guessed how much I'd love her...
Just as YOU loved her right from the start
A heart mom is always a heart mom...
Now wise beyond her years

And for those who have angels in heaven...
Our hearts share in all of your tears.
Everyday I will strive to remember...
You chose me for her and no other
And I will embrace that beautiful day...
When I became a "heart mother".
~Stephanie Husted


Another Heart Poem:

I had plans...
such perfect plans...
of how our life would be...
A perfect job, a perfect home...
a perfect family.

It seemed like it should be that way...
(of course we'd have our trials)
But most days would be sunshine...
Laughter,love, and smiles...

And then, as I held pictures...
of my child, not yet born...
And heard the words "a heart defect"...
My own heart became torn.

First came the "Hows"...
Then came the "Whys"...
Then came the question...
What if my child dies?

Hiding for a little while...
trying so hard just to cope...
Wondering will she be okay?
living each moment with hope...

I thought that perhaps,someday...
I could breathe with a sigh of relief...
And know that she will be okay...
And let go of my grief...

It seems that moment doesn't come...
As each day starts anew...
I realize I must start each day...
By giving her to You...

Whatever Your plan for her life is...
I trust that it's written with care...
And You are God no matter what...
(Even when life isn't fair)

So I will really LOVE today...
So thankful that she's here...
And give her too many kisses...
And try to let go of my fear...

I'll try not to be so resentful...
And remember that life is for living...
I'll smile just knowing, she's here with us now...
And hold tightly to each day we're given.

~Stephanie Husted

Poems that will touch your heart

A very special Mom shared a blog with me that has a bunch of poems. I will share some with you too... By the way.. do you realize that a spouse that loses their spouse is called a widow or widower but a parent that loses a child.. there is no name for it. I wish there was a name for it. Some people say it is just too horrible to even have a name. I think someone should come up with a name. I
 have racked my brain and I just can't think of one. Just a thought for the day.


If tears could build a stairway,
And memories were a lane,
We would walk right up to heaven
To bring you down again.

No farewell words were spoken,
No time to say good-bye.
You were gone before we knew it,
And only God knows why.

Our hearts still ache in sadness
And secret tears still flow,
What it meant to lose you,
No one will ever know.

When we are sad and lonely,
And everything goes wrong,
We seem to hear you whisper
"Cheer up and carry on."

Each time we look at your pictures,
You seem to smile and say,
"Don't cry, I'm only sleeping,
We'll meet again someday."

To All Parents
"I'll lend you for a while a child of mine," He said.
"For you to love the while he lives and mourn for when he's dead.
It may be six or seven years, or twenty-two or three,
But will you, till I call him back, take care of him for me?
He'll bring his charms to gladden you, and should his stay be brief,
You'll have his lovely memories as solace for your grief.
I cannot promise he will stay; since all from earth return,
But there are lessons taught down there I want this child to learn.
I've looked the wide world over in My search for teachers true
And from the throngs that crowd life's lanes I have selected you.
Now will you give him all your love, not think the labor vain,
Nor hate Me when I come to call to take him back again?"
I fancied that I that I heard them say, "Dear Lord, Thy will be done!
For all the joy Thy child shall bring, the risk of grief we run.
We'll shelter him with tenderness, we'll love him while we may,
And for the happiness we've known, forever grateful stay;
But should the angels call for him much sooner than we've planned,
We'll brave the bitter grief that comes and try to understand."


You never said you're leaving
You never said goodbye
You were gone before I knew it,
And only God knew why.
A million times I needed you,
A million times I cried.
If love alone could have saved you,
You never would have died.
In life I loved you dearly
In death I love you still
In my heart you hold a place,
That nobody could ever fill.
It broke my heart to lose you,
But you didn't go alone
For part of me went with you,
The day God took you home.


A million times I've missed you,
a million times I've cried.
If love alone could have saved you,
you never would have died.

To some you are forgotten,
to others just part of the past;
but to me who loved and lost you,
your love will always last.

It broke my heart to lose you,
you didn't go alone,
for my life went with you -sweetheart-
the day angels called you home.

For things on earth didn't matter,
but now I feel so alone,
My heart will always be broken,
my life will never be whole.

We might be parted for awhile,
our hearts will always be together
for one day soon we will hold hands again forever.


Little Snowdrop

The world may never notice
If a Snowdrop doesn't bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says of our love for you.
~ Author Unknown


I have not turned my back on you
So there is no need to cry.
I'm watching you from heaven
Just beyond the morning sky.

I've seen you almost fall apart
When you could barely stand.
I asked an angel to comfort you
And watched her take your hand.

She told me you are in more pain
Than I could ever be.
She wiped her eyes and swallowed hard
Then gave your hand to me.

Although you may not feel my touch
Or see me by your side.
I've whispered that I love you
While I wiped each tear you cried.

So please try not to ache for me
We'll meet again one day.
Beyond the dark and stormy sky
A rainbow lights the way.
~Authour Unknown


They Say There is a Reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,

For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,

We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.
~Author Unknown

To Mother and Father

There's a corner up in heaven
Where the little babies play,
And our Blessed Mother watches
All throughout the live long day.

They're a happy lot, these babies
Sure the reason's very plain
For they've missed the world's contagion,
Came unscathed, without it's pain.

"Tis an angel band they call them
And you both should happy be
You're the parents of an angel
'Cause your baby's there you see.

Yes, and smiling down upon you
With an innocent sublime:
Waiting: watching for the parents
He will meet again in time.

You should never be rebellious
Rather thank a loving God
For your little guardian angel
As along life's way you plod,

With a faith that never falters
Clasping each the other's hand
Pledge yourselves to meet your baby
In that better happy land.
~Author Unknown

Sunday, October 21, 2012

2nd Lily Grace Challenge

It is that time again!! Lily Grace was a wonderful, sweet baby that is loved by so many and she also loved everyone back. She became an angel on August 29, 2012 and in just one week on Monday, October 29, 2012 will be exactly two full months from when our sweet Lily grew her angel wings and left us here on earth.

To help make the 29th a better day, I want to challenge everyone to do something nice for someone else. This will be called "The Lily Grace Challenge" and this will happen on the 29th of every 

month (modified for February). I'm trying to turn the grief that everyone is experiencing into more of a positive experience (as much as possible).

So I challenge each and every one of you to participate in the Lily Grace Challenge. Tell your family and friends about it too. I challenge you to do at least one nice thing for someone else and this could be big or small. Just do anything that would help another person- plus you won't expect anything in return and if they want to repay you in any way just tell them that they can repay you by doing something nice for someone else in honor of Lily Grace.

I want everyone to "Pay it Forward". It will make another person feel better, brighten their day but also make you feel better too. On Monday, October 29th I would like to know how many people participate so please comment on Lily's Facebook page (Never Forget Lily Grace) or simply write a comment on her blog.  You don't have to say what you did but you could at least say "Done Lily". I was so touched and amazed by how many people participated last month. The stories were truly amazing. I already know what I am doing.. My family and I are making our first trip back to Kosair Children's Hospital to give out hairbows to sick little girls in the NICU and PICU where Lily lived her entire life. This is what we have posted about previously and we call it "The Lily Grace Project".

Thank you everyone! This Lily Grace Challenge will help to honor the memory of our precious Lily Grace on such a sad day for everyone touched by Lily Grace. Spread the word... Thanks everyone!

Lily becoming an angel.. (may be hard to see)

This is a progression of pictures showing Lily as she became an angel. This was such a hard, hard day for my family and I. To know that I was spending my last day with Lily.. to know that the medical staff was waiting on her Dad and I to say... it's time. let her go.. Hard, hard day. I only share this to give you a glimpse of the heart ache families around the world go through when they lose a child. As parents, you just feel so helpless. You would do anything to save your children... but we can't always do that. 

We did everything possible to save you Lily Grace.. Everything.. You can see the doctors handing Lily to me after she was disconnected. I held her for 15 minutes before she became an angel and held her for 4 hours after she became an angel (while the wonderful nurses let me give her a bath, dress her, change her diaper, put lotion on her, etc during that four hour period after she became an angel). I would have held her forever if I could.. in honor of you and your brothers/sisters today Lily.. We love you!!

Wonderful staff at Kosair helped us get footprints and handprints that day. So grateful!

This is just minutes before the doctors disconnected Lily from her machines. What a beautiful baby. Love those eyes!!  **She was really alert this day. She made eye contact with us all day and that was such a blessing. She was looking at us though when we gave them the word.. my words were "I'm ready to hold her" and that meant.. time to let her go and be an angel.. you can only imagine how hard it was to get those words out.**

The doctors and nurses just disconnected Lily from the ECMO and handed her straight to me. 

You can only imagine how hard this was.. I was finally able to hold Lily but knew that she was being held for the purpose of becoming an angel. Right when they handed her to me I had intense physical pain in my stomach. I didn't know that would happen but I didn't want to give her up for anything.. never... I would endure the pain to hold her and the pain was because I was losing her and there was nothing I could do to save her. 
You can only imagine..

This was one of Lily's last breaths. She kept that one eye open peeking at her Dad and I. Ricky sat on the other side of me the whole time. We just had to watch her take her last breaths.. so helpless. When her last breath happened.. it felt like the breath was taken from me. **Sometimes I can't shake this image from my mind.. her last breath and last time she looked at me.. but what a blessing that we were looking at each other though through this.. I sang "You are not alone to her" by Michael Jackson.. she knew she wasn't alone. I had 30 people with me that day (family & friends) plus the medical staff that cared so much for her as well. I can't explain it but I had over whelming anxiety about her being alone or ever feeling alone ( I know she is with God- that's not what I mean).. just thinking of leaving your child alone.. horrible, horrible feeling.. 

 Daddy and Mommy holding Lily as she just became an angel in my arms. 
We love you forever and ever Lily Grace! 

Sweet..sweet.. angel Lily Grace. 8/11/12-8/29-12.. Forever Loved..  Love you Angel Lily Bug!!

So many children gone too soon....

Almost midnight on Wednesday, October 17th I wrote the following on Lily's Facebook page:  

My heart is so broken. It was 7 weeks ago today that Lily became an angel. Today Lane Goodwin (thumbs up for Lane-had childhood cancer) became an angel. There are three new babies being buried next to Lily in one week- this week. I learned of another Hypoplastic Left Heart Syndrome (HLHS) Mom that lost her sweet baby this week. 

I feel so sad for the parents whose hearts were shattered before 
mine and after mine. No one should ever have to watch their child die or get the call that their child died. You want to do everything you can to protect your children and when this happens.. You just feel so helpless and heart broken. Enough is enough.

Close your eyes and imagine the person you care most about (or one of many people or your favorite animal even because maybe you don't have kids or maybe one of your parents) becomes sick.. The doctors come to you and say.. It doesn't look good.. What do you want to do? Are you ready to let them go? Imagine this is real.. Imagine how it would feel. You then either hold them while they slip away or just watch them slip from you.. You watch them gasp as they take their last breath.. all while you watch helpless... It's your worst nightmare.. They're gone.. It hurts to breathe.. You can't believe it..

Now open your eyes.. If it hasn't really happened then treasure every moment that you still have with those you love. You are forever loved Lily Grace!! Rest in Peace Lane and all of the other sweet children losing their battles too..


Written October 14th on Lily's Facebook page....

This is in regards to yesterday and last night (the post I wrote here on October 13th). I did have a hard night last night and I guess that was evident by my post. Shortly after I wrote that I decided to just go outside and sit in my back yard to just have a break by myself. M
y 6 year old daughter Makayla decided to join me. She asked if I was crying so I told her yes, that I just really missed Lily. So she then asked me to play hopscotch- we did and it was a fun distraction. Then I talked to her about how Lily is one of the stars above. So we tried to decide if she was the brightest star or if she was one of the lighter stars- there were so many light stars that I said it could be Lily and all of her friends watching over us.

Makayla then asked me if I wish I could have fixed Lily. I said yes.. I do wish that. I said "Do you Makayla?" and she said.. yes.. of course that is why I asked you. :) That made me laugh. Then Makayla told me "Mommy, I am not sad on the outside right now but I am sad on the inside". This time outside was really peaceful and stress free. It was great. Then I went inside and watched Modern Family which made me laugh. Crazy though that the 2 episodes that we watched were about a character being pregnant, a newborn baby class, decided if a vasectomy should be done or if they should have more kids, and I totally forgot that the little girl was named Lily. It was okay though because of my time outside.. Have a good night everyone

Jacket for Lily... :(

I posted this on Friday, October 19th on Lily's Facebook page "Never Forget Lily Grace":  

Topic: JACKET- I went to visit Lily earlier today and it continues to break my heart that Lily had no babies to the right of her but from this Monday thru tomorrow.. 3 new babies will be buried next to her. As I stood there to visit, I got really cold and my immediate thought was that "Lily needs a jacket.. I don't want her to get cold too". Then reality slaps you in the face.. She doesn't reall
y need a jacket.

There was still a part of me that wanted to get her a jacket though. What would I do with it though? I don't know- dig a hole & put it in the ground, put it on her scare crow at her burial spot, take the jacket home & put on her bear?!? I don't know. I KNOW that's irrational but my motherly instinct is that I don't want her cold. As crazy as the thought of her needing a jacket sounds., it doesn't feel irrational.

The day Lily became an angel is so clear to me still. Everything was hard but one of the things that was really unbelievably hard was walking out of the hospital that day without Lily & knowing that I was NEVER coming back to Kosair to see or get her again was heart wrenching.

Imagine the thought of knowing your child (or any child) is right there and your instinct is to protect them & not leave them alone & you have to walk out that first door to leave her, then the elevator, then the next set of doors to exit the hospital all while your child is physically right there.. Then you have to get on an elevator full of people to get in your vehicle while you get driven home.. But your child is left behind. That was pure evil and torture. So many moments that day just tore my heart out over and over. I clearly remember going down floor by floor in the garage and I just cried and cried while holding Lily's sea horse. I asked Ricky to stop because I wanted to jump out and run to Lily & get her. I just kept feeling like I was abandoning her almost..

Again just like jacket- I know that may sound irrational but living or not.. As a mother you have the same instinct to care for, protect, shelter, keep them warm, and make sure they are cared for.. Forever.. I know that God is protecting our baby but those feelings of being her Mom will never go away..

Saturday, October 13, 2012

Argh!!!... Today.... :(

I'm having a really hard day.  I started my day by reading my babies death certificate for the first time and I got a stressful letter in the mail about medical bills when I got home.  I mentioned previously that I feel like an egg sometimes.. hard on the outside but very fragile on the inside.. I feel like I am about to crack for sure.  We can hold it together for so long and then we break down.. we hold it together again until our next break down or even mini break downs in between.

I just feel like enough is enough.. like if this is a test then I failed.. God please move on.  One person can only handle so much and this person can handle no more..  People say I am strong but I am not sure why.  For me.. there was and is no different choice.  Knowing that Lily was very sick but had a chance to survive meant that I needed to fight for her and let her live as long as God was willing to let her live.  Having her for the 38 weeks and 4 days pregnant plus the precious 18 days that she was here on earth is worth any amount of pain that I feel now.

It sucks.. I'm sad.. I'm hurting.. I just miss her so bad but I would still go through this just to have her in my life.. to love on her, kiss her, sing to her, talk to her, help her.. she is and was worth it.. all my kids are.  Please pray that my test is over and that good luck will start happening.  I am very blessed for all of my children, family, friends and so much more but enough is enough.  No one here on earth can make me better.. I know that she is in a better place, that she is with people who love her, that she is my angel, that God is watching over me.. (don't take this the wrong way) but.. that doesn't always make me or anyone else feel better when they lose someone.  Sometimes it gives me peace but sometimes I'm selfish and I want her here with me.. I want to hold her.. I don't want her as my angel in heaven but rather my angel here on earth.. but that is not my choice.  I finally said that out loud recently and they didn't judge me so I wanted to share that here.. please don't take that the wrong way.. it is just how I and many others feel.. Please don't feel that you can't say that to me because it is sweet and truthful.. but we just hurt so bad that so much doesn't make us feel better..

Friday, October 12, 2012

Signs from Lily

I wrote about this on Lily's Facebook page so I wanted to share:  

Here is a sign that I got from Lily today.  I went to the funeral home to give them a thank you card along with a Lily Project Bow (to thank Schoppenhorst for helping us during such a tough time).. plus I had to pick up her death certificate and pay the funeral bill :(. So after an emotional visit to say thank you, I headed towards the front door to leave. There was a funeral going o
n and some people had been hanging out on the front porch area.... As I approached the door those individuals were coming in so I waited for them to enter before I went out the door. All of a sudden one of the ladies held the door open to the outside and said "Hey.. don't forget Lily". Really.. really?? Here I was just talking and crying about Lily to the wonderful employees at Schoppenhorst (especially Amy that works there) and then... I hear "don't forget Lily"... wow. It actually made me cry more but I am grateful for any and all signs that I get. For those that didn't see my message this morning, I want to share with you my friends experience yesterday: I'm at Walmart and a little girl riding in a shopping cart just turned around to me and said "Hi..I'm Lily Grace and I'm going to be 3"... We hear you loud and clear Lily.. just wish you were here baby girl. :) P.S. On a separate note.. I picked up her death certificate today and I received her birth certificate in the mail today.. sad combination

Thursday, October 11, 2012

Happy 2 Month Birthday Lily Grace

(same post from Lily's Facebook page: Never Forget Lily Grace" but I wanted to share this with everyone)

Happy two month birthday Lily Grace!  I just wish you were here so we could celebrate it with you.  Forever loved, Forever missed, and Forever my sweet baby girl..

In honor of Lily's birthday I want to share an update on "The Lily Grace Project".  For those that don't know, we are making hairbows to give to the sick little babies and older girls at Kosair.  We have been approved to personally give the hairbows to babies in the NICU and children/ babies in the PICU where Lily lived her entire life.  I made hairbow tags that will hold the hairbows so each person that receives a hairbow will learn about Lily and we will keep her memory alive.  Here is a picture of the hairbows with the tag.  The front of the tag has Lily's picture and the back has the wording.  I found a heart hole punch (which is perfect because of Lily's heart condition) to use so we can slide the bows on the card.  This picture shows you the heart hole punches and two different bows on the cards.  Just a sample.  :)

Lastly, some of you may remember that I was asking Lily to speak to me/ give me a sign the other day...and at that moment Kosair called to confirm we could come give out hairbows.  Well the date has been changed and we are now going Monday, October 29th.  Once this date was changed, I realized that this date is very significant as this date will be exactly 2 months from when Lily became an angel and this is called her "angelversary".  This will be the first time that I go back to Kosair since Lily became an angel in my arms.  This will be a hard day but giving the bows to the little girls will lift my spirits on such a hard day.  This will also be the second Lily Grace Challenge where I ask everyone to do something nice for someone else on that day.. so my family and I will complete our challenge by giving out the bows.

Thanks for reading!  Happy birthday beautiful baby girl!!  Sweet, sweet angel...

Monday, October 8, 2012

Hard day Lily.. Miss you more than words can describe..

For those not on Facebook- here is what I just posted on Lily's page "Never Forget Lily Grace":

Hello everyone.  So today has been really hard for me.  It started off hard and then some things happened that made it harder.  Someone, out of the kindness of their heart, that did not know about Lily being sick or passing away asked me "How is your baby"?  It was really nice of them to ask and I know this will happen.  I can usually respond but today.. I couldn't.  I could not even get one word out of my mouth.

My eyes filled with tears instantly and I knew if I said one sound that I was going to lose it.  So I gestured for my boss to respond for me and he did.. thank goodness.  It has just been an emotional day.  Lily would be 2 months old this Thursday so maybe that is why I am having a hard time.  I went to work and functioned but sometimes it is just so hard.  I would describe it as if I feel like an egg- hard shell on the outside but very fragile on the inside and it doesn't take much for me to crack.  (I don't want people to avoid me or avoid talking about Lily though because I LOVE talking about all of my kids.. I just have a harder time sometimes but that is no reason to avoid the topic).  Some seconds, minutes, hours, days..etc are easier than others.  I never know when that moment will happen.. it just happens.

Also, we just received the proof for Lily's headstone this past Friday.  No one should ever have to order a headstone for their child.  So I went to see Lily and talked to her for awhile with her.  I just lost it.. the tears could have flooded babyland at Evergreen.  So for some reason I went through and read each baby headstone and said hi to each and every baby there.  I felt like I was saying hi to her friends per se.  That started to give me peace.. it just did.  When I was ready to leave I said Lily.. please Lily.. give me a sign.. say something.. anything.  As I was walking back to the car my phone rang and it was Kosair scheduling a time for me to bring our first batch of hairbows to donate to Kosair.  We go Thursday October 25th.. I wonder if Lily had a hand in that call because I hope the hairbows bring some happiness to another sick child.. whew.. that's all for now.  I will leave you with this song:

Friday, October 5, 2012

One of my Favorite Pictures of Lily

I shared this on Facebook: 
I just love this picture. Those eyes just stare right through you and steal your heart.. so sweet. Lily truly was a gift from God.. miss you baby girl.. forever loved.. forever and always! P.S. This was the day she became an angel.. I thank God for letting her be so alert.. she was still peeking at me when she took her last breath.. I'm just so thankful that she was so interactive that day..

Mother's Necklace, drawing for Lily and more..

My Mother's necklace that I ordered from Say What Creations through Etsy.com. It has Sarah, Ethan, Blake, and Makayla on the outside part of the necklace. It has Lily Grace on the inside with angel wings. Then I have a birthstone for each child plus an angels wing next to the birthstones. I am really happy with this necklace- here is the creation. I love it!

Makayla drew pictures for Lily.. She made this HUGE heart that says "We love Lily.. this is for you" she drew two girls (one is me and one is her sister Sarah) then she drew a house that has a cloud with an angel on the cloud.. this angel and cloud is on the middle of the house.. so sweet.  The next picture is just a closer look for you to see.  It was really cute.  We all miss Lily so much.

For those of you not on Lily's Facebook page "Never Forget Lily Grace", I recently shared this:  my six year old daughter Makayla has asked a few questions recently that I wanted to share (and please know that I answered her very open/ appropriately 
but I wanted to share her questions): Is Lily above the clouds? Does she sleep on the clouds? Do you wish you were dead so you could be with Lily? Do you wish we could all go to heaven at the same time so we could be with Lily? Can we make cupcakes for Lily on her birthdays and have UPS give them to Lily? Can we buy Lily birthday presents... kids are so sweet and innocent... but the talks can be hard especially when she was taking the shower & pulled the curtain open to ask me if I wanted to be dead so I could be with Lily.. hard talks.. hard talks but I am glad she is opening up to me. She knows that I want to be here with her and everyone else but that I wish I could fly up and see Lily too but come right back down with her and her brothers/ sister and that we will go to heaven one day but not for awhile and that Lily is always with us and watching over us... 

Monday, October 1, 2012

Another video and song- Beam Me Up by Pink.. so true.. beam me up to see Lily even if for a minute..

A dear from childhood shared this song with me.. so true.. the words are so true.. even a minute.. just a glance.. to hold her face.. to touch her.. to kiss her..

Thanks for sharing!

Great video and song.. The Hurt & The Healer by MercyMe

Lily has a Facebook page:  Never Forget Lily Grace and people have been so kind.  A wonderful person that found Lily through her page shared this song with me.. it is beautiful and perfect.

More videos..Held by Natalie Grant Lyrics

A dear friend recommended this song to me today.. Held by Natalie Grant.  It is about losing your baby.. miss you sweet Lily Grace!!!

P.S.  She says lillies of the valley in this song... can't help but think of my sweet Lily..

Hairbow Progress for "The Lily Grace Project"

We had our first hairbow party last night.  From the party, donations, and hairbows that Emily and I have made.. we are at 69 very cute hairbows.  We will be making our first trip to Kosair Children's Hospital to donate the hairbows to precious sick children in the NICU and PICU during October.  This first trip will be my first trip back to Kosair since Lily became an angel.. it will be bittersweet.  I am really trying to make something good out of something so sad and painful.  Here are the hairbow creations so far:


Here is a closer view: