Friday, November 30, 2012

Christmas wish

My "Grown up Christmas List".. just like the Christmas song.. so true..  <3

Thursday, November 29, 2012

Lil' Polkadot, Lillian, and Lily's 3 month angelversary

Today is Lily's 3 month Angelversary.. I was checking out at Hobby Lobby when I saw that cute Beanie Boo lady bug that Makayla is holding. It was in a small pile of things about to be taken back and put up. Someone before me was going to 
buy it and changed their mind (the cashier told me).

Wow.. I have never seen this cute little stuffed animal and it was perfect, especially to find it like this today.. on Lily's day. We named her Lil' Polkadot after Lily & the lady bug from "The Gift of the Ladybug" book that was given to us as a gift. Lil' Polkadot has some scratches on her big blue eyes but that is okay.. Lily had blue eyes and Lily had some "scratches" or imperfections of her heart so I thought it was meant to be. I took that as a sign from Lily. ♥

The tall statue from Hobby Lobby made me think of Lily right away.. she has angel wings and.. her purse plus her dress has hearts on them. So we call her Lillian :) It just made my day..

Do you know what else made my day?? All of you that did something nice for other people in honor of Lily for the Lily Grace Challenge. Someone told me the following: "Just wanted you to know my 9 yr old granddaughters class is collecting food and donating in her name on Thursday. They have named it LILY GRACE HELPING HANDS FOR HUNGRY CHILDREN:) They collected 1O3 lbs of food and $45O.OO- the kids decided to donate money for fire victims of apt fire with no insurance".. Wow.. can you believe that?

Everyone's kindness and participation brought me to tears multiple times today. ♥ ♥ ♥ Love you Lily Bug.. miss you soooo much.. Wish you were here for Christmas.. I just wish you were here so I could give you so many hugs and kisses.. Love you forever and ever

100th post on Lily's 3 month Angelversary

Lily Grace Challenge:  "Done Lily"..I can't believe that our Lily Grace has been gone exactly 3 months today.  I say the number but it doesn't feel real.  I can't believe how much I miss her and how much I still want her to just somehow appear out of nowhere so I can have her back.  I can't believe how it feels to grieve the loss of your child..

I also can't believe that more than 400 people have said they will do the Lily Grace Challenge today so more than 400 people will be doing something nice for someone else all because of Lily Grace.  I can't believe that we are getting close to 3,000 people liking Lily's page which means that almost 3,000 people have become friends if you will.. with my sweet Lily Grace.  I can't believe that 25,000 people have read my blog about the journey my family and I have and are still going through.

I can't believe how much generosity has been bestowed on us.  I was told that for the 3rd Lily Grace Challenge today that "Just wanted you to know my 9 yr old granddaughters class is collecting food and donating in her name on Thursday.  They have named it LILY GRACE HELPING HANDS FOR HUNGRY CHILDREN:)".  I can't believe that people that I have never met are doing such great things all because of my Lily Grace.

I can't believe that we may start a "Flat Lily Grace" like the Flat Stanley or that people want to write my blog or this Facebook page on a dollar so they spread her story around the world.  I can't believe how many people write me personal messages of their story but also write me to give condolences for our loss or to tell me how they have also lost a child.  I can't believe that this is the 3rd Lily Grace Challenge in honor of Lily to do an act of kindness for someone else, I can't believe the Lily Grace Project (giving hairbows to sick little girls at Kosair), and I can't believe the Remembrance Coat & Toy drive at my work..

I can't believe that someone wants to make a memorial video for Lily, a scrapbook for Lily, send me the Ladybug book, send hairbows & stickers to give to the children at Kosair, or just to everyone else that has written to offer a generous act (I don't want to leave anyone out).. I don't want to forget anything but I just can't believe the kindness towards Lilly and our family.

I just can't believe she is really gone and I can't believe how many people now know about Lily.  When I knew Lily was going to become an angel one of my biggest worry was her being alone (I know she is with God but I mean leaving her physical body alone because you just don't leave your children alone.. very unnatural) and then once she became an angel I worried that the nurses, doctors, and so many others would forget about Lily (outside of my family).. I started this blog to document my journey of Lily's life as I never thought it would be the story of her passing and I started her Facebook page so I could tell people about Lily and so other people would "Never Forget Lily Grace".. you just never want your child to be forgotten.. Thank you to everyone who remembers Lily and thank you to everyone who is doing the Lily Grace Challenge today.  Please write "Done Lily" so she knows when you are done.. Hard day.. bless you all!

P.S.  How ironic that this is the 100th post on my blog.. today.. her 3 month angelversary

Wednesday, November 28, 2012

"Flat Lily Grace" :)

Hello everyone. I have a favor to ask.. So many things remind me of Lily but if you find a Lily ornament, a memorial ornament that makes you think of my sweet Lily, Lily jewelry, or just anything that reminds you of Lily.. will you please take the time to write me and share what you found? Maybe you can copy and paste the link & put in as a comment on this page or her Facebook page:  Never Forget Lily Grace

I think the more eyes we have 
looking out for these things the more chances we have of finding some great Lily stuff.. If it is not online then can you take a picture and share it? The links would be great so I can check it out and think about buying it. I am trying to find ways to honor her through the holidays (and beyond the holidays) and someone said a separate tree so maybe a separate tree or maybe ornaments on our tree.. Just a thought. Thanks everyone.

I asked people on Lily's Facebook page for ideas on how to incorporate her into the holidays or beyond the holidays and someone had the idea like "Flat Stanley".  If you don't know who Flat Stanley is there is a book about him but the concept of Flat Stanley is:  
 "The Flat Stanley project started in 1994 and is a pen pal program in which children in one classroom create a Flat Stanley and a journal of where Flat Stanley has gone. The students in that classroom then mail that to another class in the project which will do the same." So we would encourage people to read Lily's blog or Facebook page and then participate in "Flat Lily Grace"  :)  

So now we need to decide how to do "Flat Lily Grace".. Do we have people send it around but that may get hard or do I just ask people to print a picture from this site (one main picture) and then have people take pictures with "Flat Lily" so it is like Lily is seeing the world.. and the pictures would represent her worldly travels.. I'm thinking.. Thanks everyone. Happy Holidays to you and your family ♥

3 month Angelversary Tomorrow.. picture slideshow of Lily again

I shared this on September 28 which was one day shy of one month from losing my sweet Lily. I just wanted to share this again as this Thursday, November 29, 2012 will be 3 months from when I lost Lily and new friends (from her Facebook page Never Forget Lily Grace and this blog) have found Lily Grace since I posted this.

I miss Lily more than words can ever explain and this video gives you a glimpse of our story.. Love you Lily Bug!!
I made this video the day before Lily's funeral. It is not fancy as I can do better but it is perfect.. perfect because it captures Lily's entire life.. first breath to her last breath. It has songs that mean the world to me and this was played continuously as people came to Lily's visitation before her funeral service started. This is to honor Lily as tomorrow is one official month from the day she passed.. She was born on August 11, 2012 and became an angel on August 29, 2012. This is a video that celebrates her life. We miss you sweet Lily!

Monday, November 26, 2012

"The 3rd Lily Grace Challenge".. I challenge you

It is hard to believe that this Thursday, November 29th will be exactly 3 months from when our sweet Lily Grace became an angel. That is so hard for me to accept. 

In honor of Lily's monthly Angelversary I ask everyone to do something nice for someone else on the 29th of the month. So this Thursday, November 29th I ask you to participate in "The Lily Grace Challenge"... Her angelversary is a very hard day for all of us and I am try to turn that day of sadness into more of a positive day (as much as pos

Our Lillian "Lily" Grace was such a wonderful, sweet and perfect baby that left our world way too soon at just 18 days old. I held her as she took her last breath and the whole time she kept one eye looking at me.. well she is looking at all of us and to honor her and everyone gone before us.. please do something nice on the 29th or any other day of the month to remember our loved ones gone too soon.

If you live in Louisville you can donate a toy or coat to my Remembrance Coat and Toy drive that I am holding at my work. :)

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.

Thank you everyone! When you are done with her challenge please post "Done Lily"... that way Lily knows you are done. :) 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!

Makayla's message to her sister Lily

On Sunday night before Lily's older sister Makayla (age 6) was going to bed.. I found this on her floor.  She wrote out the following on her Magna Doodle:  

In case you can't read it- she was saying:  From Lily Grace if you are hearing this I just wanted to say that I love you! <3

So sweet.. My kids really do love and miss their sister.  Makayla talks about her the most- she sleeps with the teddy bear that the hospital gave her and she named her "Lily Bear".  Every night I kiss her and Lily Bear goodnight.  Ethan our 10 year old did not want to read this out loud because he doesn't want to get sad or cry but he does miss her.. it is just too hard for him to talk about her.. It is so hard on siblings to lose a brother or sister.. so so sad... breaks my heart

Sunday, November 25, 2012

"The Gift of the LadyBug"- thank you Lorch Family!

Thank you Lorch Family! Yesterday I received the sweetest book from one of Lily's Facebook friends called "The Gift of the LadyBug". 

This book is incredibly sweet as we call Lily "Lily Bug" and lady bugs are a sign of Lily to us. I got this yesterday and sat all the kids down and read it to them. I cried.. so sweet- the gesture and this book. 

Two horses wanted a baby so bad and they had a
little ladybug. They loved their child so much that they didn't notice that their child was "different". They didn't know until they took their baby "Polkadot" to the doctor. That is when the doctor told them that their baby was different and that he was not like other horses. They learned then that their baby Polkadot would not live as long as horses normally do..

That part is when the horses started to cry because they knew that they would one day lose their sweet baby Polkadot and that is when I started to cry as I read the book too.. Such a sweet book with great meaning. The author came up with the concept of the book when doctors at the Cleveland Clinic told her that her son may not make it to his second birthday and he did end up becoming an angel at just 14 months old.

Even when our babies are different they are worth loving and they are worth a chance at life. Great book and I recommend it to anyone that has lost a child or even for families that have not.. cherish every minute that you have with your children..

Thank you to the Lorch Family for thinking about sweet Lily Grace and her family!!

Saturday, November 24, 2012

Grieving a big loss is like being a "Crippled Bird"

This song is dedicated to anyone that is grieving the loss of someone special in their life.  I can see how those of us grieving a big loss are like "Crippled Birds"... Love to all of our angels..

"Somewhere Over the Rainbow".. sweet dreams dear children..

One of Lily's songs is the Hawaiian version of "Somewhere Over the Rainbow" but this version is so beautiful that I want to dedicate this to my Lillian Grace, Sarah, Ethan, Blake, and Makayla.. and to all other children.  Children are just so precious- they come in all shapes, colors, personalities, and health.. but they are all worthy of life.  Somewhere over the Rainbow baby girl.. <3

I vowed to "Fix You" Lily and to never give up- I would do that for any of my kids!

I just wanted to share. When I found out Lily was sick.. it was never an option to give up on her or to terminate my pregnancy (which I was asked by one of my doctors.."have we talked about termination because you are getting close to the cut off.." that was the night of April 19th on my son Blake's 7th birthday)... I vowed to Lily to always love her and that I would do everything humanly possibly to "fix her".. Love you Lily Bug and I know you felt the love during my pregnancy, during your life, now and forever more.. ♥

Friday, November 23, 2012

Did you know.. Congenital Heart Disease is the #1 Birth Defect in America?

Did you know that Congenital Heart Disease (CHD) is the #1 Birth Defect in America? 

Many of you say that Lily is now free from pain and suffering but so many babies with CHD start out like Lily and live long, productive lives.. free of pain and suffering.  My dear Lillian Grace.. I just wish you were one of the many that survive every year..  

It was estimated that Lily had a 70-80% chance of survival with her Hypoplastic Left Heart Syndrome (HLHS) and mosaic chromosome 17 condition.. I will never know how her Mosaic Chromosome 17 condition would have effected her as she physically presented normal. She had a 9/9 Apgar score at birth. She had a thickened nuchal fold (essentially a fat roll) on her neck that never showed up on ultrasound and was a small physical characteristic.. didn't do anything to her and she had a straight line across her hand (just like her Dad does).. Those were the only physical characteristics that showed for her mosaic chromosome 17 condition.. It could have effected her mildly or severely.. I would have been there every step of the way for Lily no matter what though..

She had a high chance of survival.. very high. Remember CHD is the #1 Birth Defect in America.. a heart defect is more common than you think.. 

 Facts about congenital heart defects ( Congenital heart defects are the most common types of birth defects in children. In fact, 1 out of every 120 babies in the U.S. is born with a congenital heart defect each year. In 2012, about 1 million babies will be diagnosed with CHD worldwide. Congenital heart defects are approximately 60 times more prevalent than childhood cancer and are the leading cause of deaths in the first year of life.... it took my sweet Lily's life.. just so sad that it took Lily's life.. I miss you sweet fighter..


Thursday, November 22, 2012

This is not how my Thanksgiving is supposed to be..

Written at 12:30 am this morning on Thanksgiving (Lily's Facebook page: Never Forget Lily Grace):  

As Crazy as it sounds.. I wish I was spending my Thanksgiving at Kosair Children's Hospital because that would mean Lily was still living here on earth with us. Better yet.. I wish Lily had just come home from Kosair and I just had to be extra cautious with her around people for the holidays. 

Before I had Lily I had so many thoughts and dreams of what our future would be like with her. I already had it all mapped out. Our trips to the store as a family, our time at home with her (tracking her weight, tracking her eating, talking to the heart team at least weekly about her progress).. yep.. I was mentally prepared.

I remember specifically thinking about how Thanksgiving would go.. she would be a fragile child in the sense that we would have to be really careful having her around a lot of people because she could get sick easily due to her heart..

Thanksgiving & Christmas would be our first big holidays for this.. I had everything mapped out & organized..

So here I sit.. 30 minutes into Thanksgiving day with no baby to care for in the middle of the night, no baby to worry about at Thanksgiving, no hospital to visit to see Lily, no charting of what she's eating or her weight to report to the cardiologist.. No baby crying for her Mom to feed, change, or love on her..

So I ask that everyone be thankful for their house full of children that are living and healthy.. Be thankful for the baby that wakes you up at night.. be thankful even if you have to visit your child in the hospital (I'm sorry that they are in the hospital & sick but.. at least they are still here on earth with you...)

I would give anything to have Lily back.. even if it meant lack of sleep, spending my time between the hospital and home again.. My holidays included Lily..all 5 of our children.. 5.. Not 4.. I had it all figured out..

Love you Lily, Sarah, Ethan, Blake, and Makayla.. Happy Thanksgiving to all 5 of my children.. all 5 ;(

Wednesday, November 21, 2012

Grieving parent.. my heart is heavy

Grieving Parent 

My heart is heavy
Not just heavy sad but
Literally feels physically heavy

Halloween was bittersweet sad
Thanksgiving feels heavy heart sad
I can't imagine how I'll feel in the next few weeks

How can my heart possibly feel so heavy
When a part of my heart was taken
The day my child was taken

The day my child left was unbearable
The pain, the sadness, the heart ache
The pain was physical and deep on so many levels

I can't take it day by day yet
I'm barely making it minute by minute
Sometimes I'm taking it second by second

My angel child completed my family
Then my angel left & uncompleted my family
My life is full & yet so empty at the same time

Someone told me best
"you never need to ride another roller coaster again"
So true in so many ways

My life has the highest emotional hills
And the lowest emotional drops
An unpredictable roller coaster ride that you never wanted to ride

That's my life around the holidays
Not just the holidays but minute by minute, second by second
And forever more..

- Amy Elzy.. Grieving Mom of Lily Grace

Tuesday, November 20, 2012

3 part update.. last night/ coat & toy drive/ made someone feel bad :(

Hello everyone. A few things: 

1. So.. yeah.. hard night last night. For those that read my "update on Autopsy post" and especially the comment under that post.. thanks for reading. Thank you for your support. I almost said sorry but I'm not because I couldn't help it. It really was a hard night. I know that she is in a better place, she is in the arms of God, she is watching over me.. etc but.. I just want her back so bad that sometimes those things don't help to ease my pain and sadness. Thanks for the support. :)

2. The Coat & Toy drive has officially started this week. Thank you to Jackie (my dear sweet Jackie) for making the first coat donation and to Ellen (sweet Ellen) for making the first toy donation - my healthcare work buddies for making the first donations to our Remembrance drive. I am just sorry that I didn't have the memory mat ready to sign when you all stopped by today. It is ready now though and I have attached a picture. I bought a 16x20 frame with a signature mat that holds an 8x10 picture. I put the coat/ toy drive flyer that I made with the mat (altered to fit), added an "I'll remember you" poem, and "every day I love you" sticker. I put the mat on a table top easel in our lobby so when someone makes a donation they can sign the name of their loved one that has passed. I made this drive so you can donate in memory of your loved one. I hope to see this mat filled up with names. :)

3. Lastly.. After I had Lily my son Ethan became friends with some more great kids in the neighborhood. The kids are off school for Thanksgiving now so he is staying the night with one of his newer friends. He is sooo excited. His friends Mom (super sweet Mom) came in and we talked about Ethan staying the night. I introduced her to all the kids and then she said that Ethan told her we had a baby. So she asked about our baby. I just froze.. I stopped and stared at Sarah (like help..). It's like I didn't know what to say. I just feel so bad because that made her feel bad. It made her feel bad for asking. I froze and then I muttered the words.. yes.. she passed away. I had to freeze like that though because I felt an instant rush of wanting to break out in tears and I was trying to contain myself (because I didn't want her to feel bad). So then after a breather I was able to talk about Lily and I brought in a picture of Lily so she could see our angel. So Ethan told her that we had a baby but never told her that she was sick or that she passed away. I felt so bad for his Mom. She said that she felt stupid for asking and bad for asking.. I just wish that I could look at someone when that happens unexpectantly and say "yes we had a baby named Lily who was very sick and sadly, she passed away. Thank you for asking." Instead.. I just freeze for a moment or cry and make people feel bad for asking. I just hate that.. She was so sweet to ask about our baby and I don't want people to stop asking... I'm just not there yet..

So that's my 3 part update.. have a good night everyone. :)

Another update on Autopsy.. :(

Posted very late Monday night (11/19/12) on Facebook:  Short update on Autopsy: So I received a call from Lily's cardiologist this afternoon so we could discuss her autopsy. So he went over it in detail and... all I can say is hard afternoon/ night. I posted about a quick update on her autops
y that I received a week or so ago. For tonight I will just leave you with a quick note and then I will write more later about her autopsy.

The good news is that there was nothing different that the cardiologist could have done to save her. The autopsy results concluded that additional heart surgery wouldn't have saved Lily. Pretty much her kidney and lungs started dying.. they failed.

The bad news.. there was nothing that could be done to save Lily.

I'm grateful to know that there is nothing different that could have been done to save Lily because.. I would live with that thought and regret for the rest of my life. It just breaks my heart still that there was nothing else that could be done to save Lily.

That's all I can muster up at this point but I will leave you with a song. I know Beyonce's song Halo really isn't about angels like Lily but I love this song. I can't help but think of Lily every time I hear the halo and angel parts... I don't care what the song is really about.. in my mind.. it is for Lily and all of our other angels out there..

So for tonight.. Halo Lily.. My heart is so broken and I am so sorry that nothing could have been done to save you when you were 18 days old... ;( I would have done ANYTHING for you Lily. Love you to the moon and back one million times sweet girl...

**Since many of you are not on Facebook I want you to see my comment under this post.. you can tell I was having a hard night.. but I still want to share:
I just want her back & there's nothing I can do about it. 

I was at Hobby Lobby for work when I got the call. I stood in the aisles of Hobby Lobby talking about her autopsy and then I cried..cried... cried in the aisles of Hobby Lobby after the call. I would have left but I needed to finish shopping for work. People may have thought I was crazy but i don't really care. I wasn't going to not talk to the dr either.. 

Plain and simple.. God knows my heart & I know he understands where I'm coming from.. I want her here with me.. no where else.. Plain & simple. Nothing else is going to make that better for now. Sorry but nothing. God won't judge me for that. 

I want Lily here & all 5 of my kids should be together- not 4 here & 1 in heaven.. Here.. Getting my hugs and kisses just like my other kids.. here with me.. in MY arms.. mine.. mine..

(please don't try to tell me otherwise.. not today..)

My Christmas Wish.. we all know..

On Sunday November 18th I posted about this song on Facebook:  Twice today I've heard the Christmas song with the chorus "time will heal all hearts.. every man will have a will never end..this is my grown up Christmas list.." 

I've cried like a baby both times. Christmas is my favorite holiday and the Christmas things that I love.. Story, decorations, family, music..just everything about it.. I just don't know how it's going to feel because my heart is so broken right now. 

I think we all know what my grown up Christmas wish is for this year and every year to come.. my sweet baby Lily Grace...

After Baby Shower..

Sunday (11/18/12) night after the baby shower:  

Baby Shower.. I know many of you are wanting to know how the baby shower for my sister-n-law went today. It was beautiful like I knew it would be. Jessica looked beautiful like I knew she would. Baby Lyla received so many beautiful prese
nts like I knew she would. As for myself.. it went as I thought it would. :)

I discretely (or so I hope it was discrete) left the house a few times to cry or just take a breather to gather myself. I was emotional when I wrapped her gift last night and I was emotional before I left the house today. I was okay when I got there as this was such a happy occasion. I just get a little overwhelmed with crowds so when that started to happen I walked outside for a minute. I do wish I could have started more conversations with some of the guest but I'm not quite that good yet.. I would have prior to what happened with Lily but again.. I get overwhelmed easily or have anxiety easier than I ever did before..

The hardest part had to be presents and I don't really know why. I held myself together until Jessica opened presents. I wish I wouldn't have cried the way I did but I really couldn't help it and I know everyone understood. Jessica and I talked before hand and she was very supportive of what I was going through.. I have a great family but yes.. I did cry A LOT during the presents.

Lily gave Jessica a gift of some of her favorite things.. :) I just wish Lily and Lyla, Makynlea, Dean, Maddox.. all of her cousins & of course her siblings would have grown up together and played together.. it just breaks my heart.

I think the presents were hard because it is just a hard reminder that Lily is no longer here and I will never be able to buy those things for Lily.. she received a lot of clothes that said "I love Mommy" and for some reason that made me tearful.. I can't explain it. I was there and I am glad that I was there- Emotional or not.. I was there.. Thank you for the thoughts, words, and prayers :)

**This was my post on Lily's Facebook page (Never Forget Lily Grace) and this was the response from family:  

Mother-n-law Darla:  
 Amy. We are all so glad you came. I know it was hard for you. You are such a kind , thoughtful & amazing person . Giving Jessica a Seahorse like the one that soothed Lily & gave us all a purpose for 18 days & the Boppie that was to be Lily's were very thoughtful. I love you & Lily so much

Aunt Dee Dee (Darla's sister):  
You did Incredibly well yesterday Amy! We all know it was difficult for you! I am so glad you came and I am Soooooo glad you are a part of our family!!! Love ya!!

Jessica (baby Lyla's Mom and my Sister-n-Law):  The gifts meant the world to me and baby Lyla.... Im even going to keep the little angel bag in Lyla's room. I am so proud of you, words cannot express how proud i am and how grateful i am that you are a part of my family. You and Lily have brought so many people and hearts together... Her memory will never be forgotten. I already know that everytime i look at Lyla, a part of me will think of Lily. They will be close even though Lily physically isn't here with us. I have already put the sea horse Lily gave Lyla in her crib... They will be best buddies. Love you!

So sweet.. <3  I love all of my family (and friends that are like family)

Big day on Sunday (this past Sunday)

This post was done Saturday, November 17th on  Lily's Facebook page (Never Forget Lily Grace) and I am just a few days behind updating her blog but I wanted to share:

Tomorrow is a big day.. I'm attending a baby shower in honor of my sister-n-law Jessica. She's having a baby girl named Lyla.

I'm excited for the shower as I'm happy for Jessica but my heart & mind are going through a lot of emotions right now.. Lily should be here.. Lily should be playing with Lyla one day.. I may struggle being around so many baby girl things tomorrow (baby decorations, baby g
irl games, baby items that Lily will never have a chance to get/use, etc) but I would never miss the shower..

I love Jess.. I love baby Lyla. I may cry and that makes me sad because tomorrow is a happy day.. I want tomorrow to be perfect for Jessica and baby Lyla. I don't want to bring any sadness to such a happy occasion. Jess deserves that.

So tomorrow is a big day... for so many of us in so many ways.. but most importantly a big, happy day for Jess & Lyla

White feathers..

I knew the white feathers were from Lily ;)

"My Mom is a Survivor"

I just saw this on someone's page and I thought I would share this too.. I am a sharing machine tonight.. I guess I've posted enough to last a few days. :) I just thought it was sweet.. 

I wonder if this is what Lily says about me...

So touching.. I wish Lily was here for Christmas..

Get ready to cry... so touching how there are so many good people out there.. 

Christmas is my absolute favorite holiday too Dax.. I'm just nervous how great it will be for me this year. I feel like I'm going to cry my way through holidays... I just wish Lily could have made it through at least one Christmas.. ;..(

Please take the time to watch this video.. :)

Don't Take the Girl..

"Don't Take the Girl"... Lily was blessed to have so many great people taking care of her at Kosair. One person that I would like to mention is Alberto (JR) who was her respiratory therapist. He worked later hours and he was just so nice 
and kind to all of us. He would do the sweetest thing though.. when he was taking care of Lily he would sing to her. When he found out that Lily wasn't doing so well.. he sang to her like he always did but.. the night before she became an angel he sang "Don't Take the Girl"...

How sweet is that... It's an old song so the video is not the greatest quality but it is an amazing song. He was so wonderful and caring to her. What a perfect song.. I just wish God would have granted us that wish..

Lily's Sea Horse

Topic: Sea Horse. When I was pregnant with Lily I did a lot of research and asked a lot of questions.. shocker to those who know me. I just wanted to be prepared. One great suggestion by a fellow heart Mom was to buy the Fisher Price Oc
ean Wonder Sea Horse. They have a boy and girl version so I naturally bought the pink one.

I am forever grateful for that recommendation. Anyone who visited Lily knows all about her favorite toy.. the Sea Horse. Even if you never met Lily you can see this sea horse in almost every picture that we have of Lily. You see.. this sea horse was soothing. It had a soothing light and it played very peaceful music.

My family and I turned this sea horse on and played it every minute that we could. The wonderful staff at Kosair let us put it by her head as our hopes were that she would be soothed by this toy rather than hear all of the beeping, machines, and commotion around her. She really seemed to like it.. We think she liked it so much that we had to even change batteries a few times because we seriously.. played it ALL of the time.

There wasn't much that we could actually do for Lily.. but we could do that. It's like we were actually taking care of her in a way..

In the NICU before she ever had her open heart surgery, one of her nurses told me that when she did get upset they would turn the sea horse on and it would help to calm her down. I love this sea horse. I kept the actual sea horse that stayed by Lily (as it was almost always touching her)... it stays with me at all times.. that's my little secret. A dear friend bought another pink sea horse for Lily and she was buried with that new sea horse... this sea horse means more to me than just any old toy.. I just wanted to share.

Thursday, November 15, 2012

Wish there was visiting hours in heaven..

A local radio station 99.7 WDJX is doing a radiothon to raise money for Kosair Children's Hospital. This is a WONDERFUL thing as they do help all of our kids (throughout Kentucky & whoever needs their help) so much. 

I am forever grateful for the care Kosair gave to my sweet Lily, myself, and our family. The staff at Kosair was amazing to us and they help way more than many people know. Their
 staff truly seemed to care for Lily and they tried so much to save Lily's life.

You never know when your child, a child from your family, a friends child, coworker's child, neighbor..etc.. may need help from Kosair or another children's hospital. You pray that it never happens... I pray that it never happens to you but if it does.. I hope you have great people there like Lily did.

So as great as this radiothon is.. I'm having trouble listening to the personal stories.. touches your heart.. so sad in so many ways.

In conclusion.. This picture speaks for itself.. this picture may be true for you too.. Bless you and your family..

How will you live your dash?

I attended an event today through work and the speaker read a poem that I have never heard before. I thought it had a lot of meaning so I wanted to share it with you all. I hope you like it as much as I did.. Lily left a big imprint during her dash :) Will you?
The Dash Poem, by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end

He noted that first came the date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was “the dash” between those years

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash”

Wednesday, November 14, 2012

It's like a divorce... :(

When you tell coworkers bye for the day & say I'm going home to see my family..what does that mean for you? 

When I tell people bye..I'm going to see my kids.. that means I'm going home to see Sarah, Ethan, Blake & Makayla but also detouri
ng to the cemetery to see Lily.. my youngest child.

It's just so unfair.. no one should have to visit a cemetery to see their child.... No one should have to split their time between a cemetery & their house... no one..

**This picture is not Lily's burial spot but rather one of the burial spots for one of Lily's neighbors at Evergreen Babyland section.. Happy birthday sweet baby... It caught my eye when I just pulled up to see Lily... No one should have to celebrate their babies birthday like this either.. no one.. ;(

It's just things that people don't think about until they are put in this situation. It almost feels like a divorce situation.. Your time is split up.. on Christmas, every holiday.. in fact every want to see all your kids.. but now the cemetery is part of the equation....

Tuesday, November 13, 2012

Thought for the Month: I'm that person :(

Thought for the month:  

You know how you hear a story & you think.. "That's so sad..I can't imagine if that was me?", "that poor person.. They didn't deserve that".. "I can't imagine how that possibly feels..".. 

It just sucks when you ARE that person- when you are the person everyone feels sorry for, when you are the person that no one knows what to say to, when you are the person that's awkward to make conversation with.. that's me now.. Sadly.. there's so many people just like me too.

I'm very grateful for everyone who tries hard, for all of the prayers.. I'm sorry for when I'm awkward.. I'm just a sad person right now that has trouble talking about things other than my family & Lily (outside of work that is)..

Just like you all may not know what to say to us.. We don't always know what to say to other people either sometimes. I'm trying though.

I don't think we as a society really think about that (or I probably didn't when I wasn't this person).. but it can be just as awkward for the person that went through the tragedy to know what to say to people.. To know how to respond.. etc as it is for the outside person who wants to say hi, wants to check on me, wants to see how I'm doing..etc.. Now I can't speak for everyone but I know that is true for myself.

I try to not make other people uncomfortable with my answers (I try..). Sometimes I'm too sad to try though. When people ask how I'm doing.. Do they really want to know or are they just making conversation? Saying I'm ok is the easiest answer but I usually say.. well not really but I'm hanging on. There needs to be another answer besides "okay".. ;) You can ask.. it's nice of you but I'm not okay & I may not be for awhile but thanks for checking. Sorry in advance if I'm having a rough day though & you really hear how I'm doing. ;)

For me- I like when people check on me (whether it be a call, text, email, etc.), if you don't know what to say then just say hi- sorry for your loss (breaks the ice & the awkwardness is gone), & approaching me is better than avoiding me.

Also, when someone first loses a precious loved one- everyone gathers around, checks on you (email, texts, calls..etc), sends cards to say they are thinking of you & then everything stops abruptly.. You are kind of alone with your grief while the world around you continues when you almost feel like your world stands still.. that can be hard. You almost wish it was spread out so it didn't hit so heavy & end so quick & alone (if that makes sense).

Lastly, during the holidays say an extra prayer for those having a hard time in their life because the holidays are hard. For me, I'm less one child for Halloween, Thanksgiving, Christmas & then the New Year starts without Lily so it's going to be hard.

If I cry.. you didn't make me cry- I'm just trying hard to hold it together & it doesn't take much for me to not stay strong. Sometimes the nicest gestures or comments break my moment of strength & make me cry but that's okay.. I'm going to cry.. Please don't be uncomfortable & I'll try to not be uncomfortable ;)

***I think this would apply to not only when someone loses someone but also if someone is sick, if their loved one is sick, if other big things (scary, crazy, sad, etc..) happen in someone's life.. This post is for so many of us.. 

**Please know that when I open up my heart & put it to writing.. I do it not just for myself but to hopefully reach someone else. I'm hoping that someone else will understand or relate, that it speaks to how someone else is feeling but maybe they've just never said it themselves, or that it can help other people understand us more.. understand what goes on in my mind & maybe yours too.. I write to hopefully help us all..

**I posted this on Facebook and a very nice person responded with this:  

I can only offer the perspective as a friend of someone who has suffered a loss. A close friend of mine lost her son to what they believed was SIDS in 2008. At the funeral, I just stood there, praying she wouldn't notice me. 

But then, she glanced over her shoulder, just barely, and her gaze met mine. She immediately started crying and mouthed the worlds "thank you" We hugged awkwardly. She asked if I wanted to see him.

What I WANTED to do was run back to the car, drive home, grab my own baby, and go back to pretending that babies did not die. But, I heard myself say "Yes," and she led me up to the front. I tried to conjure up something inspirational or meaningful to say the whole way. We finally made it to the casket, and I said the only words that seemed fitting: "he's beautiful." She smiled back at me and said "thank you. I think so too." And then it was just us, and she was just my friend, and she was just a mommy who was proud of her son, and me just being there was enough. 

So, I guess my point is: Just be there. 

And to you... I think of Lily Grace often. I wanted to let you know that. I have seen you say several times that you don't know why people think you are strong, but you are. I have seen what happens when parents aren't so strong. You are taking your own tragedy and using it to brighten the lives of other children. You're still here, still breathing, and still spreading love, when you could so easily be spreading bitterness and hate. That makes you strong, even if you fall apart the whole way. 

My prayers go out to you and your family. 

So what she wanted me to say... is... Just be there. It will be enough.


***So this was my response:  Thank you Erin for that beautiful post. 

I can only imagine how hard it was for people to attend Lily's visitation & funeral. I choose to have an open casket & I honestly wasn't thinking about whether it would make other people uncomfortable. The most important thing to me was that this was the last time that we could spend with Lily's physical body.. that's what mattered. It meant the world to me that they were able to make Lily look good enough to have an open casket & they worked so hard to do that for us. 

She didn't look exactly like Lily anymore but that didn't matter.. This was the last time that I could look at & touch my baby.. you can only imagine how hard it was to know that they were going to put that lid on Lily's casket.. she would be forever closed in that.. Too hard. It was hard enough walking away from Lily after she passed away at Kosair and here I got to see her physical body one last time..and walk away from her again without taking her home. 

So I know that simply coming to the funeral had to be hard for people and then to see an open casket was way harder but they did it.. they came & that's what mattered. Not what they said.. just being there mattered. 

Nothing was going to bring Lily back so words weren't going to ease anything.. just showing up, saying you’re sorry, and being there.. that mattered. For those that couldn't come because of work..just sending me a message to say you couldn't come mattered.. avoiding me & her death all together.. that was hard for me. 

Even if it was too hard for people to walk up front to see Lily..that's okay- I understood.. you were there though. I appreciate that support so much.

Picture from Lily's first day here with us

Lily's first day.. Holding Mommy's finger.. We sure love this little baby and we were all so excited to meet her.. Love and miss you forever Lily Bug ♥

***You know what's so heart breaking.. I took a lot of these NICU pictures because I re
ad this would be the only time she would be without her open heart surgery scars.. I just never thought it would represent her short time here on earth with us.. Very bittersweet. I would have gladly taken care of her for the rest of her life.. scars and all.

Sunday, November 11, 2012

Ten Commandments For a Grieving Parent

Happy 3 Month Birthday Sweet Baby Lily.. :(

Happy 3 month birthday sweet baby girl Lily Grace! I can't believe you would be 3 months old today. You should have recovered from your open heart surgery & been home around this time. 

I hope there is a party in heaven with all your new friends & our family. Maybe Jesus will put a new pretty hairbow in your hair today... that's from me Lily. Love you baby girl! Forever missed, always loved, & never forgotten!!

On Saturday I saw a little baby girl that looked around 3 months old. She was so cute with a headband & cute hairbow. My heart still aches when I see newborns but now it is now expanding to babies that look like they would be Lily's age. 

**if you are pregnant or have children & you ever catch someone looking towards your direction.. It may be because of a loss they have endured or because they long to have children one day- just a thought.

I just miss Lily so much. I just don't understand why Lily had to leave me. I still get emails and mailings related to having a baby because I'm technically a new Mom.. I'm just a new Mom without my baby ;(

Here's what Lily would be doing at 3 months old:

Here are the skills, traits, or habits a child will typically have developed by three months of age:

Social and Emotional:
Social smile
Communication of feelings through face and body
Varied cries (hunger vs. pain)

Raises head and chest when lying on stomach
Stretches legs and kicks
Opens and closes hands
Brings hand to mouth
Shakes toys placed in hand

Watches faces and follows moving objects
Recognizes familiar things and people at a distance
Smiles at sound of voices
Begins to babble and echo sounds

I still would have chosen you...

Just read this on a heart board through and I needed to share- so true. This is so true Lily!! I thought other parents could relate to this as well so I wanted to share. 

If before you were born,
I could have gone to heaven and saw all the beautiful souls, 
I still would have chosen you... 

If God had told me, 
"This soul would one day need extra care and needs", 
I still would ha
ve chosen you.

If he had told me, "This soul may make your heart bleed",
I still would have chosen you.

If he had told me,
"This soul would make you question the depth of your faith",
I still would have chosen you.

If He had told me,
"This soul would make tears flow from your eyes that could fill a river",
I still would have chosen you.

If He had told me
"This soul may one day make you witness overbearing suffering",
I still would have chosen you.

If he had told me,
"All that you know to be normal would drastically change",
I still would have chosen you.

Of course, even though I would have chosen you,
I know it was God who chose me for you.

-Terri Ba nish.

Thursday, November 8, 2012

Hard.. hard day.. update on autopsy

Some days are just harder than others.. today is one of those days. 

I received a nice note from the cardiologist today and he gave us an update on Lily's autopsy.. which was nice but it just made me extremely sad.. like heart hurting sad. I am guessing that we will still meet about the results but I guess no big answers from what I understand. "Ravages of poor perfusion and the documentation 
that Lily had multiple organ failure that was as bad as we suspected.." I learned that poor perfusion is poor blood circulation throughout her body (if I am saying that correct).

I knew that we would hear something about her autopsy one day and I have been anxious to hear.. it just doesn't make it easier to hear. It just made me think of her poor body with bad circulation and each organ shutting down.. one at a time.. it just makes me beyond sad. She had strong heart echos and appeared to have strong heart function from what I understood so Lily is just a puzzle.. to me at least. So I am just trying to understand if her function was strong then how can she have poor perfusion?? Hopefully we will still meet and have that discussion.

Am I shocked by what was written or that we really may never know why.. no. I knew that could be the outcome. I just didn't realize how sad hearing some of her autopsy results would make me. I am already so sad.. this is like a deeper sad today which happens to me sometimes.. I was just caught off guard. (The cardiologist did nothing wrong as I appreciate the note.. I am just a grieving Mom.. that's all.. promise).

No one should ever have the word autopsy and the name of their child in the same sentence.. never.. it is not right. It is just not right. :(

Lastly, Makayla and I were working on a project- we went downstairs to get something for her project when she stopped at Lily's picture.. she stopped and said "hi Lily" and then she leaned in and kissed her picture. Makayla has NEVER done this before. Then she did the same thing to a more pictures that we have of Lily. She then had me do it (which I do a lot). It just made my heart even sadder.. so sweet.. but so sad that we have to kiss our baby through a picture....

Remembrance Coat & Toy Drive.. November 19th- December 29th

Topic: Coat Drive 

I have attached the flyer that I made for the "Remembrance Coat & Toy Drive in Memory of Lily Grace"... it is official. It starts November 19th and ends December 29th. This is the 5th year that I have ran a coat drive at work and I never would have thought I would be doing a coat drive in memory of my baby.. it is so heart breaking. It feels good to do something nice for other people but it is still so heart breaking to endure such a loss. I am so thankful that my work has allowed me to do this coat & toy drive in memory of Lily. This coat drive is for more than the loss of Lily though.. it is for every person that has passed away before and after Lily too.

I will have a canvas or mat for you to sign when you make a donation at my work. You see.. I feel that when you make a donation you are donating in honor of someone you have lost.. no matter who that is. So I would like you to put their name on the designated memory board to help honor them just like I will honor Lily, my grandparents, and friends.. (I just need to donate a few things so I can put all of their names down).. :)

Thank you for taking the time to read.. please share..share..share.. not only this coat drive but this blog too.. Let's make not only Lily proud but also every loved one that you have lost proud too.. Love you Lily Grace!!

Tuesday, November 6, 2012

Coat & Toy Drive in Memory of Lily...

Topic: Coat & Toy Drive.. While we all watch the presidential race.. Let me give you a non-political post ;). My work officially approved for me to have a coat drive in Lily's memory. I was going to call it the Lily Grace Coat Drive but a lot of people won't know what that means.. So.. I want to call it "Remembrance Coat & Toy Drive in Memory of Lily Grace".. I added the toy drive because I thought that was significant. ;) 

My plan is to put a little blurb about Lily on the flyers that advertise the drive but I want this to be about remembering everyone's loved ones.. not just my sweet Lily. I also plan to put either a canvas or mat on an easel in the lobby of my work so when people drop off their donation they can sign the name of their loved one.. so they are donating toys or coats in memory of their loved one. 

That way we never forget anyone that has passed away.. Love you Lily..