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
visit.

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
fine."

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

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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."
~Unknown
------------------------------------------

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."
~Unknown

-----------------------------------------

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.
~Unknown

-------------------------------------------

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.
~Unknown

----------------------------------------

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