Thursday, January 31, 2013

Hairbow model Amaira...

Hairbow model Amaira. Many of you prayed for this sweet baby girl within the last week because she was put in the hospital for RSV. Well this is Amaira feeling better and wearing a "Lily Grace Project: Hairbows for Healing" hairbow that her Aunt Kylie bought during January 2013. Amaira was born just one week after my sweet Lily was born!

Kylie told me before that they loved the hairbow and she hopes the other little one who gets a bow loves theirs just as much :)

Kylie told me that she started following Lily's story when she realized how close Amaira's and Lily's birthday were to each other.

She also said the following: I am so sorry and can't not imagine how you feel but you are taking something horrible and making something beautiful out of it. May God Bless both you and your family ♥ "

GUESS WHAT??? Kylie liked the bow for her niece so much and what it represents that she just ordered a second one.. so another hairbow will be donated because of her purchase! Thank you for sharing Kylie!

5 hours and 5 months ago...

I almost forgot to share this post from Lily's Facebook page that I wrote Tuesday, January 29th... 
5 hours and 5 months ago (3:30 pm on 8/29/12).... I lost my sweet baby girl Lily Grace. This is the hardest journey that I have ever gone through and continue to go through. I know that my family and friends miss and grieve the loss of sweet Lily too.. it is unbelievable that she is gone.. We LOVE you so much sweet girl!!

I begged Lily.. please.. please send me a sign.. and I just got it. My kids listen to Pandora kids radio when they take showers and out of no where.. one of her songs started to play "Somewhere over the Rainbow"- the Hawaiian version... my ten year old son Ethan and I ran to the bathroom and listened to the whole song together... He even went and got Lily bear and put it by us while the song played... we needed that Lilybug!!

I think you all should hear it too!!

First I am sharing the video (that I have shared multiple times but some of you may have missed it) that I made of our pictures with her songs for Lily's funeral... it just seems fitting for today. Here is the link:

Somewhere Over The Rainbow plays on there but here is the link for the video to the actual song and this is for everyone that has already seen our video before:

Pulse Ox screening could save your baby!!

Tomorrow, Friday, February 1st is National "Go Red" day for heart disease! Who will be wearing red for Lily, for other heart children, and for heart adults too?? Share pictures if you want.. Wear red as much as you can in February!! ♥

Now about this picture: "Pulse Ox Screening"-A simple screening test could pinpoint babies who are at risk for heart defects and potentially save their lives, according to a new study.

The test -- called a pulse oximetry test -- consists of sensors placed on a baby's hand and foot to check the baby's blood oxygen level. If it's too low, a heart ultrasound is conducted to detect any congenital (present at birth) heart defects.

Fifty percent of babies with congenital heart defects are identified during pregnancy, but that percentage could go up to 92 percent if this blood oxygen test was utilized, BBC News reported.

The "test is simple, painless and quite cheap -- picks up warning signs even in babies that seem healthy," study researcher Dr. Andrew Ewer, M.D., told BBC News. it can also pick up other health problems, like infections and breathing problems.

Congenital heart defects are extremely common, affecting 1 in 100 babies in the United States.
Some symptoms of a heart defect can be seen or easily detected but this is not always the case. A simple pulse ox reading would have saved so many babies that passed away too soon because their heart defect was undetected. Lily's heart defect was detected by ultrasound but not all children are that lucky.

Here is one mother who lost her sweet baby and she could have been saved if the pulse ox reading was mandatory..

When my niece Lyla was born I asked one of the nurses if they would do a pulse ox screening on Lyla and she said.. that's not standard if the child presents like their heart is fine.. You see it is not mandatory in all states yet.. It kind of upset me because.. Neither did Cora... and she passed away 5 days later.. we need to educate and bring awareness to this!!

Wear red tomorrow!!!

Confessions of a Grieving Mom..

Last night I shared the following post on Lily's Facebook page "Never Forget Lily Grace".. I was having a hard night..

Confessions of a grieving Mom... I'm longing for all of the things that I couldn't do with Lily.. seeing other babies right now is making it really hard on me..,

I wanted to feed her, hold her (skin to skin), get newborn pictures (I had it all planned out.. Her cute little scar over her heart would be showing).. I want to wake up in the night with her, buy her a "first" outfit for the different occasions (Christmas, Easter, birthday, etc)..

Take her on a trip one day.. take the cute monthly pictures (I'm one month old, two months old, etc) that people always post... Get a family picture taken which I was never able to do..

I'm not jealous of others I guess.. I don't think other grieving parents are jealous either .. we just long for the child, dreams, opportunities, and everything that we lost when we lost our child... It changes you beyond words that you can describe..

I think seeing other people have what I no longer have is just a sadness for what I've lost..what was taken from me... It's just a cruel feeling ❤❤

Monday, January 28, 2013

5th Lily Grace Challenge- Do something nice for others..

Will you do something on Tuesday, January 29th in honor of my sweet Lily Grace and all of her friends in heaven? January 29th represents 5 months exactly that my sweet Lily Grace passed away in my arms.. hardest day of my life. 

The 11th of the month represents the day she was born and the 29th is her angelversary. To help me have something positive to look forward to that day.. I ask that you do something nice for others and if you feel the desire to share that with me.. please do so. If not.. that is okay but please put Done Lily!

Every time I see "Done Lily" then I know that someone has honored Lily and her angel friends.. it makes my heart a little happier during such a sad time.

Much Love from Lily's Mommy- Amy

**PLEASE complete the Lily Grace Challenge and SHARE..SHARE..SHARE.  Share her event, this blog, and her Facebook page "Never Forget Lily Grace**

Why I call Lily an Angel

Why I call Lily an Angel: I was asked "Do you refer to Lily as an angel because you really think she became one or just more of an adjective to describe her being so angelic like?" I am not offended by this question. 

Someone else approached me about this before and I was offended by their approach because they told me that Lily was not really an angel and the schooled me on why.. they meant well but it was not the right thing to do to a Mom grieving over the loss of her child. In case anyone else is wondering, here is my response:

Do I think Lily passed away and grew angel wings?.... No. Do I think Lily is my sweet baby in heaven watching over me? Yes.. To me she is my angel and always will be..

When people buy hairbows from our project I include a note: From my angel Lily Grace in heaven to your angel here on earth.

To me it's more about a symbol or the qualities of an angel but I do say "when Lily became an angel". It's more a sweet term of endearment for me.. a symbol of love.

Then I thought about it more and came up with this as well: I do say that Lily became an angel in my arms when I tell her story or when people ask how my baby is doing (those that don't know she passed away)- my response is usually that my baby Lily became an angel or that she didn't make it...

Why do I say angel.. After Lily passed away.. I immediately described her passing as "when Lily became an angel".. I never really thought about why but I did think about it.. my biggest reason is that saying Lily became an angel in my arms is easier than saying Lily died in my arms or responding with my baby Lily became an angel is so much easier on me than saying "died".. I have a REALLY hard time saying that about my child. I HATE that word died.. especially since Lily passed away.. it's so harsh and maybe because it's so real.. I hate it though.. I can barely speak that word anymore..

When I talk to other grieving parents.. I'm sure I use the term angel with them too because it is so much more gentle to say "tell me about your angel in heaven" or "can I ask about your angel child"... Than.. "Tell me about your child that died or can I ask about your child that died (or even passed).."

Another Mom (Nikki) who lost her son.. he was born sleeping responded with: I myself think of my son as born into angel's arms. I was brought up to believe that angels were created by God and we do not become them. My son is my angel but I think of him as being kept by Gods angels in heavens nursery to forever be young. When I get to heaven I will hold him as the newborn he was. And we will forever be that way.

In conclusion.. I don't know if I have really shared a picture of Lily's face after she became an angel.. but here is Lily with her Dad and I... RIP sweet angel.. I can't believe you will be gone from me for 5 months tomorrow.. ♥

©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge |

You will be gone for 5 months tomorrow.. :(

Five months ago tomorrow on January 29, 2013 will be exactly 5 months since my family and I: last saw Lily Grace with her eyes open, last time we looked into Lily's beautiful eyes and Lily looked into ours, last time we held each others hands/ fingers, last time I kissed Lily alive, the first and last time that I bathed Lily...

...last time that I was able to sing and talk to Lily alive, was able to give Lily her first and only haircut, last time we told Lily how much we loved her... to not be scared because she was going to heaven, and to not be scared because she would not be alone...

Five months ago tomorrow on Wednesday, August 29th at 3:30 pm our Lily Grace became an angel in my arms... ❤❤❤❤ no words can describe how this feels... ❤❤❤❤

RIP baby girl.. Forever Loved..Always Missed.. Never Forgotten..

Lily has her Mommy's Eyes...

I think she has Mommy's eyes: I wasn't able to hold Lily much but I was able to look into her eyes a lot... Some people said she looks like my kids or me, etc.. but I really didn't know..

So I got this picture collage app & put our pictures side by side.. I think she has my eyes or maybe I just want her to look like me somehow so in my mind..I think she does..

My 6 year old Makayla looks a lot like me. The boys look more like their Dad Ricky. I wish I had a non-ventilator picture that I could share like this so you could see her full face with her eyes open..

It was neat to put her picture by mine.. I just miss this angel so much.. ❤❤

Where's my Ponytail.. :)

Where's my pony tail? Ha ha.. The people that know me well.. know that I wear a pony tail almost every single day unless I get my favorite hair style.. the angled bob.. Otherwise known by Lily's Dad Ricky as "the skater girl haircut" ☺

I feel a little silly posting a picture of myself but I've had many people recognize me as Lily's Mom in public... I look a little different without my ponytail so I thought it was only fair to share my new hairdo so you can still talk to me ☺. It's really sweet when Lily's friends talk to me...

I should do a count down to when my famous ponytail will come back... my coworkers and Ricky probably hope never.. Ha ha!

Thursday, January 24, 2013

Our next Kosair Children's Hospital Hairbow Trip!!

My latest hairbow creations.. We go back to Kosair during "Congenital Heart Defect Awareness Week" in February so we are doing heart themes...

The star hairbows are a surprise for two special little girls from their Angel in heaven ❤❤

**Look at the top right hairbow.. it is an angel holding a heart.. That's my Lily.. ha ha..**

Hairbows for Healing.. a new meaning..

Honored.. The Lily Grace Project: Hairbows for Healing means more to people than I ever could have dreamed.. 

Within the last week, I have sold 7 hairbows to two families and they were both buying them to help honor a special angel in their life.. It was the Mom for one family and Dad for the other.. This past week held a special meaning for the families- either the day their parent passed away or their parents birthday..

Lily's Hairbows for Healing has a bigger meaning now.. Lily's up in heaven with their parents and shining down on her mission.. Our hairbow project is a blessing for us and for so many families and for that.. I'm grateful..

Here is a beautiful picture of one of the hairbows purchased and this is to honor this sweet girls grandma ❤❤

Thank you Everyone...

Thank you for finding Lily everyone... Thank you for your incredible support & words of encouragement.. Thank you for telling others about Lily, her page, and about our hairbow mission to honor Lily and all other children gone too soon.. 

I never dreamed this is where my life would be... 

I now have friends all over the world because of my sweet Lily.. People even approach me in public now too.. I'm not used to that attention part yet but people are always so sweet and they talk about Lily.. They remember Lily.. That feels awesome ❤❤

**I have had more than 26,000 people read my blog since Lily was born and Lily now has more than 3,400 friends on Facebook that follow her story plus many others who read it.. thank you everyone for your support of my sweet baby girl...**

A News Story about Lily!!!

Local news wants to do a story about The Lily Grace Project: Hairbows for Healing

About one week ago I was in my breakroom and somehow I started talking about Lily and our hairbow mission. My coworker joked that she was touched by what I was doing so she wanted to contact the news because they needed to do a story about me. 

Well she wasn't joking.. She went in a mission to get other coworkers to contact the news and she wrote them the sweetest email about Lily and I. She copied me on an email and I just couldn't believe it.. How sweet..

Well.. It worked and now Rachel Platt with WHAS 11 just contacted me today and she ended her email with "so very sorry for your loss- but inspired by what you are doing"

Oh my goodness....A wonderful person named Beverly used to work with my family member Dee Dee and she follows Lily's story through Facebook. Well she works for the Disney stores now and I ran into her this past weekend.. she said that she is so touched by our hairbow mission that she wants to write Disney Junior's show "Minnie's Bow-Tique"... about Minnie's hairbiws- to share our hairbow mission... I just can't believe all of this.. We LOVE Disney.. We LOVE Lily and all other children gone too soon.. I can't believe all of this..

I didn't even like the attention that I got at my first child's baby shower.. people all staring at me and watching me open gifts (and I'm talking family and friends at that shower).. This is the public..ahhh!!! But..this is not about me.. If I can help even one person.. This is all worth it!! ❤❤

Tuesday, January 22, 2013

Wow... The "First" Baby in our family after Lily...

Wow.. my last post was about "firsts" and this is a good followup to that.. Yesterday Lily's Aunt Jessica (Ricky's sister) went into labor.. she was due Sunday, 1/20/13 and the doctors thought she would possibly go past her due date by up to 1-2 weeks... Lyla had other plans.. here is how it played out yesterday.  I will take my posts from Facebook yesterday and do a story line for you to see... Here we go...
All my kids including Lily are getting a new baby cousin today... Lyla Jo will be here today.. I know Lily is watching over Lyla and blessed her before she comes to us.. I just know it.. Prayers for everyone today.. ❤❤ This is Jessica's "first baby" and my "first baby" since Lily ❤❤

(This was a joke that I did because of all the silly posts that get put on Facebook.. )

Help me.. If I get a million likes today my baby will be here soon.. Help please!! I'm 5-6 cm and I need baby Lyla to come meet us.. My nurse wants your help.. 

Please hit like.. PLEASE.. if you don't hit like then you don't like babies.. Or you don't like your Mom.. JUST KIDDING...Don't you hate these posts.. Ha ha!!!

Waiting on Baby Lyla to arrive.. Jessica holding my baby Lily's seahorse.. Jess, Lyla, and Lily together ❤..... We will be meeting baby Lyla very soon ❤❤

Welcome Lily, Sarah, Ethan, Blake, and Makayla's newest cousin... Lyla JoLee... Born at 5:16 pm, weighed 7.1 pounds, 19" long, Apgar 9/9

She looks great and is perfect but we are asking for a pulse ox screening.. to make sure her heart is as perfect as it seems.. Just to be safe.. ❤❤❤

I love Lyla.. I love baby Makynlea (Lily's other niece that just turned one in December), and baby Emerson (friends daughter that just turned one this past weekend).. 

But this is really playing with my head and heart.. I left the hospital of the birth of a beautiful baby girl but when I passed the cemetery where my baby girl is buried.. It's all gone downhill for me.. I never did skin to skin contact with my baby.. I never breast fed my baby (pump only), my baby will never have a first birthday.. Second, third, etc..

I'm so grateful for the experiences, especially today.. I wouldn't trade it.. My heart is just shattered and longing for my baby Lily.. That's all.. passing the cemetery on the highway coming home just sent me over the edge into sadness and longing for what I don't have... ❤❤❤ but I'm not alone, I'll get through it ❤❤

Signs from Lily: today was very hard for me.. no doubt about it... no secret. The birth of Baby Lyla- the first baby born (especially in our family) since my baby Lily became an angel.

I've been asking Lily for a sign and today... I think she gave me two at least..

See this picture- a few months ago at Lylas baby shower we were supposed to guess the date & time that Lyla would be born plus her height & weight. Look at my guess... Lyla was 19" (exactly), born today on 1/21/13 (exactly- due date was yesterday), weight was 7 lbs 1 oz (I guessed 7 lbs 2 oz), and I guessed 4 pm (born at 5:16 pm).. So I won but.. Wow.. so close to what really happened.. Did Lily help me when I filled that out.. It's crazy?!?

Second sign.. at the end of this hard day when I was leaving the hospital that I did not deliver Lily at.. there was Lily's Labor & Delivery nurse standing there..

Her brother had a baby today & their room is on the same floor/ near Jessica's (Lyla's Mom).. My labor nurse for Lily was leaving at the same exact time that I was leaving & we got on the elevator together to leave.. We talked.. what are the odds that I'd see MY labor nurse for Lily on this day.. My "first" baby day... ❤❤

Thanks Lily.. signs received!!! ❤ Maybe your headstone will come in next Lily.. Keep the signs coming baby girl ❤

Sunday, January 20, 2013

Let's talk about Firsts...

Posted today 1/20/13 on Lily's Facebook page "Never Forget Lily Grace":  
Let's talk about "The First" anything after you lose someone.... What do I mean by "The First".. for a grieving parent- the first: baby shower that you go to or are asked to attend, baby shower that you are asked to host, 1st birthday party of another child that you are asked to attend, going to the hospital to visit a new baby that was just born, holidays without your loved one, their next birthday and every birthday after that they are no longer here to celebrate with you....

...heck.. what about other things that some people may not think about..the first: time you have to go into a store or restaurant after you lose your loved one, you have to drive on your own, you have to face the hospital or place where you lost your loved one (for some it is not even the same hospital... any hospital represents what happens), time you are asked to hold a brand new baby after you lose yours, go back to work, go to a big function with a lot of people, parties in general...

For someone that loses a spouse it could be their first: anniversary party they are asked to attend, graduation of their child, wedding of their own child, wedding of another child because of the symbol of marriage, the first time they have to pay bills without the support from their spouse, the first time they vacation without their spouse, even going shopping, to the movies, going out to eat... things they used to do with their spouse..anything..

My "first time" facing the public: I remember when we were looking for a cemetery for Lily and we got hungry so we stopped at Chick-Fil-A... it shouldn't have been an issue because I have been here many, many times before but I really could have gone into a full blown panic/ anxiety attack by just going there "What if I see someone I know.. this the first time I have to face people outside of my little world since Lily passed away..there are so many people.. it is hard to breathe.. I need to get out of here.. ".. who would have thought? Not me.. It was just Chick-Fil-A??? :(

By the way, I have never had an anxiety/panic attack but since the second I have lost Lily.. I think I have come close so many times.. but I know that I am not alone or at least from other grieving people that I have talked too..

For me.. I am trying to face everything head on and it is not easy but is it ever going to get easy?? No.. so as hard as it may be.. I am doing it. The first time I drove myself back into the garage at Kosair and walked through those doors... wow.. UNBELIEVABLY HARD... but I did it. I found a way to go back two months to the day that Lily passed away... We take the hairbows and for me.. it helps me to face some of the scariest situations that I need to face.. The hairbows helped me have some joy on such a hard day.. I found a way to bring some positive into such a hard day.. it was HARD.. no lie.. I cried but I did it.. I didn't want to wait until I had to take my child or go visit someone else's child at the Children's hospital when they were sick.. that would have been disastrous for me...

I went to my sister-n-law's baby shower for her little girl (that is due today by the way)... that was VERY hard but I did it.. I cried.. but I did it.. I was scared but I did it.. I went to my first "birthday party for a child turning one" yesterday... it was hard.. but I did it.. I cried but I did it.. When we face these things there are so many emotions that go through us.. "my child should be here, my child will never have a "first" birthday (or heck I may feel that way about every age.. 2nd, 3rd, 10th, 16th, etc around the time that she would be that age), I should be getting a baby sitter for my Lily so I could attend this, "Look at that baby over there..she is around Lily's age (for me.. infants up to how old she should be are hard for me now.. I thought it would progress to what her age is but no... now more babies make me sad)..

I just wanted to share one more glimpse into what grieving people go through in their daily life.. it is not just our loved one/ child's "first birthday, first Christmas, first holiday, first this or that.." that we are missing out on.. so many other things are hard for us because that should be us... our past, present, and future is forever changed when we lose someone so special to us.. it effects so much more... ♥

Hairbows..Hairbows.. and even more Hairbows!!!

Our Lily Bear Model is showing you some recent zebra print inspired hairbows that we made... I have learned that zebra print is popular and oh so cute too!!! 

We have sold 16 hairbows, gave one away to Lily's friend for sharing Lily's page in a contest, and then donated 3 for an auction to raise money for a family battling cancer.. all since around January 3rd.

I count them all so 20 hairbows will be donated to precious, sick children because of this.. It's so wonderful!!! Thank you all for your support... ❤❤

Please SHARE...SHARE....SHARE!!!! Help to spread the word about The Lily Grace Project: Hairbows for Healing...

My Lily Grace Prayer Bear is modeling some of our recent hairbow creations that we are selling as our "surprise me option"...

I wanted to share some new pictures with everyone!! I just LOVE this bear.. such a good model for hairbows!!

Please SHARE...SHARE....SHARE!!!! Help to spread the word about The Lily Grace Project: Hairbows for Healing...

**ANNOUNCEMENT** Price & Headband change...

Every hairbow will be a price of $11 for one hairbow, $10 for two - five hairbows, and $9 each for six or more hairbows. The price includes a hairbow, Lily Grace tag, free shipping within the United States, and headbands are NOT included in the price of the hairbow.

Headbands can now be purchased for $3 each (only if you purchase a hairbow- cannot be sold alone). After I receive your email then I will send you an invoice and once payment is received, you will get your hairbows as soon as possible! It is that simple! It is for a good cause.

Simply email and tell me your name, address, and quantity of hairbows that you want. You will get a "surprise me" bow which means that you will see what your beautiful hairbow looks like when your hairbow arrives.. a Lily Grace surprise is so exciting!!

We want to keep my sweet Lily Grace and all of the other precious sick children as our main focus on this project. Please remember that my family and I work full time jobs while trying to fulfill this mission too.

***This is my personal stash of ribbon and my family has many more.. we are trying hard to spread joy through hairbows!! Many blessings to you and your family!!***

Lily's honorary "God Grandmother"...

Lily's "God Grandmother" :) ... Beckie Baker met my family at a local holiday show and she has made donations of hairbows to help bring joy to other children plus she donated a doll to my Lily... She shared this earlier and I want to share with you: 
Beckie Stallard Followell Baker
Amy I have always wanted a positive way to share my thoughts and feeling of a death that changes your life forever. I chose not to grieve though in my heart I do and I am so grateful that my new husband has ALWAYS expected me to talk about my James.

We fell in love when I was 14, married in 1982. I was told I would never have children but God blessed me with two. We had the best life- 2 children 2 dogs and the picket fence. Knowing we would raise our children then be blessed with grandchildren and grow old together....j But God chose a different path for my life.

I became a widow in 1997..after 3 years of fighting brain cancer he took my James. I love him so much and always feel him with me just like you have Lilly with you. I cannot lie... I had A lot of anger but I don't now...unless you have experienced death too soon you can't understand how it feels.

I don't share my story for pity but to inspire someone who is in the early stage of grief and anger..I am always open to sharing and listening to who ever needs me.

I prayed last night that my James would watch over Lily Grace in heaven and he siad he would. They are there together. Heaven is real and I am positive they both are there.

James was a musician.. he sang like an angel and I have no doubt he is singing her lullabies. Thanks for this site to give people the freedom to say how they feel with people who understand where your at.  Thank You!
No.. thank you Beckie!! Lily is really going out of her way to bring so many people into my life that I would have never met if it wasn't for Lily (some great people too)! Beckie had the privilege of naming her recent grandchild if the baby was a girl.. she ended up having a grandson but the name she was going to name her.. Lily Grace... she was led to us.. I just know it... she has her Lily Grace now... it is not a coincidence!! ♥

Society and the Grieving Process...

On Thursday, January 17th I wrote the following post on Lily's Facebook page "Never Forget Lily Grace" and we had a very good conversation.. I hope you can take a moment to go read all of the comments but here is my post:

Why do you think it is so hard for our society to talk about death or the grieving process? When a tragedy happens everyone talks.. not necessarily to the families..but everyone talks. Then afterwards.. people don't really talk about it or people just don't know what to say, etc. 

What goes through your minds when a tragedy occurs with someone you know- say they lose a child, spouse, parent, etc? What about at the funeral and then shortly after the funeral.. then what goes through your mind (when you are both around the person and not around the person- do you avoid them- calls and in person or do you not avoid them but avoid the topic.. how do you feel about it)??

Just curious.. I just don't think society knows how to handle grieving or at least they don't know how to talk about it... does that make sense? Curious to what you all think or even if you want to share experiences that you all have had (maybe it was your own personal tragedy or maybe it was someone else's tragedy.. so you looking in..) Hmmmm.....

Here are a few of the responses to this post:  
From sweet Michelle:  Well you proved a point with this post  I tried to come up with words and could not. For me I know there is nothing I can say to take any bit of pain away all you can do is be there for a grieving friend or family member. Sometimes words that are meant to help hurt more then just listening.

Me:  Yes..see. Almost 200 people have looked at this post.. it is hard.  Yes each person grieves differently but I am talking more about how people outside of the situation handle a tragedy.. You've heard of six degrees of separation (or I think that is what it is called).. so the first degree to me is the person directly effected- a parent, child, sibling, spouse, etc.. then layers of the family.. friends.. co-workers.. acquaintances.. this post is really meant for llike those 2 degrees of separation from the situation or further.. it seems that the people directly impacted would have the hardest time but yet.. the people a little further from the tragedy have a harder time talking about it where the person directly involved is sometimes more open or wants to hear their name or wants to talk about where other people.. don't know how to deal with it.. does that make sense? 

From sweet Toni:   I hate that no one even talks about my husband in front of me. I guess they think it will upset me to much. I totally understand what you are saying.

From sweet Erin:  Well... when my friend lost her son, it was sort of surreal at first. I hadn't seen her in over a year, so it was easy to detach myself for the first few days after I found out. At first I denied that it could have actually happened to someone we knew. We decided to go to the funeral (my sister and I). When we got there and I saw her and I saw the casket open, I wanted to turn back and leave. That was when it kind of hit me that a baby really had died. My daughter's name is Katie, and she was six months old at the time. I just kept thinking..."that was her Katie...and he's gone. She lost her baby. How could I lose Katie? How did this happen?" I think we all like to live in our bubbles. When we watch the news and something bad happens, it's easy to compartmentalize it into a box labeled "stuff that happens to people far away from me." Then when it happens to somebody you know, shit suddenly gets real. You have to face the concept that life really is that uncertain. If it could happen to her, then what made me any more special? It's sort of like watching your worst nightmare unfold. Not in the same way as the person it's happening to obviously. Never to that extent. But it's still a sudden bursting of a bubble. Your head has to come out of the sand. And that is something people have a hard time dealing with. My first reaction was to leave. I wanted to keep pretending. I like to think I didn't do that, but it seemed inappropriate to ask if I was "there enough." But I think that is where the avoidance comes from. It's because we want to keep pretending that stuff like babies dying doesn't really happen. If we keep coming around, it reminds us that it could easily happen to any one of us, and that's something we'd all rather not face. Is that fair to the people who have no choice? No. But that is where I think the avoidance comes from.

From sweet Nicole:  I can't handle grief at all..I'm not ashamed to admit it either. The closest person I've lost is my great great grandmother..two years ago. I couldn't go to her funeral because I couldn't handle it.. I still cry when I see her pictures, someone mentions her etc. I cannot imagine losing my spouse or child. I'm afraid it would be the end of me. No, I know it would be. I admire the strength of the people who deal with such tragedies and survive.

From sweet Trisha:  Sadly enough grief is too taboo. Unfortunately people are curious in the begining, everyone wants to know what happened, why, how, and when. However when they are faced with being confronted by someones grief they would rather just avoid the situation. For us parents, it doesnt go away. We carry our grief daily. We learned to live with those who dont know what to say, turn their cheeks or completely avoid us. We cope, we cry, but we learn. I cry tears for other parents who have to experience what I have experienced. Society is harsh... unfortunately. 

From sweet Jessica:   I understand completely and just posted on my Facebook about this the other night. I think people feel that if they talk of Khloe it will remind me she is dead. I know she is gone. I live and feel that every second of everyday. I feel it is my responsibility to raise awareness to my grief and let others know that it is a gift when they talk about her. Remind she is remembered and special. I think people avoid death because they are compassionate and care for us and don't want to hurt us. At least I hope that is it and not that they are self absorbed and uncaring. All I can do is say her name, let others know I want to hear her name, and expect nothing. Grief can be such a lonely place...

Me:  I guess I'm talking more about people in your own life though... We have all probably known of someone that we grew up with, work with, went to school with, or have some connection too.... even friends with someone that's gone through a big tragedy.. 

I was probably that person too.. When I would hear of a tragedy like someone losing a child.. I would become emotional for that person but it was almost too hard to confront it head on.. Like I probably only thought about big tragedies to a certain point because it was too hard to face.. Because what if it was my family.. It was almost too hard to think about.. 

Now I'm that person.. Now I know that it is important to speak about the person that passed.. They were real., they were here and even though it is easier to not talk about the person that passed or the tragedy surrounding it (meaning the person looking from the outside and not the person directly effected).... Because it is emotionally hard as an outsider (outsider doesnt mean stranger.. again- just anyone not immediately effected like the parent, spouse, etc).. I now now that it is way more important to speak about the person no longer here because that shows that they were not forgotten (where as avoiding can almost seem like our loved one is forgotten).. 

It may not seem that way to the person on the outside because they may do it because they think that's the right thing to do.. but as a whole.. I think society needs some tweaking on how people respond to others that have been through a tragedy.. 

Not to be rude either but honestly.. Some people avoid because they think they are doing the right thing while others avoid because it's too hard for them to deal with (too hard because "what if" it was their family & that reality is scary)... and that second reason.. Is selfish.. If you think it's hard for you.. Just imagine what the person most effected is going through.. 

By the way.. I'm not saying this about any one person.. I've talked with other people who have lost people and I think things could be better in our society.. I hope this makes sense

Me again:  It's when people don't call or avoid you when you are going through one if the toughest things in your life.. That's hard. If someone said.. Amy- it's just too hard for me to deal with.. That's better than acting like nothing ever happened or acting like I didn't lose a child & that life is normal..

I had some very brave people come to Lily's funeral- people who were pregnant or recently had babies.. I know that was hard on them but they came and they were there for me. That meant a lot. 

Then some people avoided me around Lily's death & funeral.. That was hard. A lot of people could not come to her funeral because of work or commitments.. I understand that.. But not being there and no contact or no attempt to be there.. That's hard.. 

People being there for me during this tough time in my life means more to me than they will ever know.. I will never forget and I would do the same for them

The rest is in Facebook...  :) 


Recent posts from Lily's Facebook page (Never Forget Lily Grace):

I feel in my heart that we did everything possible to save Lily but sometimes thoughts creep in my head.. the what ifs.. What if we did this or that.. Went here.. Saw that person.. Maybe I didn't beg God enough .. I prayed but what if I prayed more.. 

I stop the thoughts as soon as they come because I know that my mind is just not listening to my heart that moment.. but.. what if.. Would she still be here ❤❤. That's hard.. I'm guessing this is normal and I'm sure other people feel that way about their loved ones that have passed..

Losing someone can be so full of guilt.. the what ifs- The way you grieve.. The way your mind thinks.. Just anything.. Losing someone is so complicated and multi-faceted..


On a positive note.. I want to share two cute babies modeling a hairbow that their families got for them from us for "The Lily Grace Project:  Hairbows for Healing"

^^^My beautiful model is Lydia.. her Mommy is Rossalynn Crary. I did a contest one day to see who would share Lily's page to win a hairbow.. Rossalynn was the winner!! 

Lydia is modeling one of our heart hairbows with a headband. :) She sent me a few pictures but Lydia sticking her tongue out was perfect.. ha ha!! ♥ Rossalynn says: "We love our new hair bow"

^^^Lily's Facebook friend Kylie bought this beautiful hairbow for her precious niece Amaira who was born just one week before my Lily.

Kylie says "Yes she loved it here is just one picture I will send a better one once I get a headband for it :) thanks so much! I hope the other little one who gets a bow loves theirs just as much :) I started following when I realized how close Amaira's and Lily's birthday are to each other. I am so sorry and can't not imagine how you feel but you are taking something horrible and making something beautiful out of it. May God Bless both you and your family ♥ "

Always in my prayers

Kylie and Amaira
 — with Kylie McGee.

Thursday, January 17, 2013

If you had one wish....

Amen!! I wish Lily back all of the time . Would you wish someone back? What would your one wish be?? Tell me..

Makayla's Corner (Lily's six year old sister)..

Makayla's Corner: Typed by Lily's older sister Makayla (she was our youngest before Lily): My name is Makayla. I am six years old. I love my sister Lily because I love being a big sister. I’m going to draw now…

Tuesday, January 15, 2013

When a Child Loses Their Sibling... from Lily's Sister Sarah..

Sarah's Corner: When a Child Loses their sibling..perspective from Lily's older sister Sarah (17 now/ 16 when her sister Lily became an angel): Last year during winter break my family and I went to Disney World. I love Disney World, and I was really looking forward to the trip. When we got to the hotel room Amy said she had something to tell my siblings and I; she told us she wouldn't be able to ride very many rides with us because she's pregnant.

I wish I could tell you that hearing this news made be happy to have another brother or sister, but really I was a little upset. Most people at school don't have siblings 16 years younger than them. Plus, I already had enough siblings, I didn't need another one. Looking back now, I feel extremely guilty for those thoughts. I should have been happy to have a little brother or sister, and I shouldn't have been so selfish.

When Amy told us that the baby would be a girl, she also told us that she was very sick and would have to have open heart surgery. I was very optimistic leading up to Lily's birth. The possibility of her not making it never crossed my mind.

I spent the entire night at the hospital leading up to Lily's birth. Although, I wasn't initially happy about having a little sister, I was getting excited and couldn't wait for her to be born.
When she was 5 days old Lily had to have open heart surgery. I went to the hospital and waited with the rest of my family. I was still feeling very optimistic.

One day my dad came home from the hospital and told me about how Lily had to have chest compressions, and the doctors said there was a 50/50 chance of her making it. This was the first time I let myself think about the chance of her not making it. After that I was too scared to ask how she was doing because I didn't want to hear bad news.

After school had started, my little siblings and I went to the hospital to see Lily. I thought this was just a normal trip to see her. Amy told me there was a counselor who was going to talk to us, but I just thought it was to see how we were dealing with everything. I started hearing bits of people's conversation about how there was nothing else the doctors could do, but I wouldn't let myself believe what I was hearing.

Later my family and I were gathered in a small waiting room that we had made our own while Lily was in the PICU. The counselor started by saying something about how sometimes kids are sick and doctors have to fix them. "Sometimes there's nothing the doctors can do," when she said this it all sunk in. I didn't want to cry in front of everybody, but there was no way to hold it in. The doctors did everything they could, but Lily wasn't going to make it.

They told me they were going to turn off the machines that were keeping Lily alive... in two days. I planned on going to school the next day because I thought it would be best to take my mind off of what was going on, but when I woke up that morning Amy was already up getting ready to go to the hospital. She told me I wasn't going to school and that Lily was going to be taken of the machines a day earlier than expected.. so she was going to be gone that day...

That day is mostly a blur. I remember standing in the small PICU room with about 30 of my family members, as the doctors turned the machines off and placed Lily in Amy's arms. Then she passed away. I felt very numb.

Later, Amy gave Lily a bath with a wash rag. One of the nurses asked if I wanted to help and I did. I helped give baths to all my other little siblings, and it felt wrong that I would never be able to do that with Lily so I helped clean her body.

When we left the hospital that day, I sat in the backseat as Amy cried. I felt very helpless. There was nothing I could do to make anything better and I had no idea what to say.

During the next few days I helped shop with family to get the kids clothes for the funeral, and I went to funeral homes and cemeteries as Amy and my dad tried to pick a place for Lily. I wanted to feel like I was doing something to help.

The day after the funeral, I had to go back to school. I had no desire to return to school. I didn't want to deal with people asking me where I had been because I wouldn't be able to answer them. My motivation to do work was gone. I really didn't want to go back, but I had to.

It's been almost 5 months now since Lily has passed. I get sad whenever I think of all the things she won't be here for. I'll be graduating high school soon, and she won't be there. I used to imagine her being the flower girl at my wedding, but that won't happen either.

I know Lily was here for a reason. She brought people together. People do good things in her name. Lily has changed my life and made me realize there are much bigger things in the world than just me.

Congenital Heart Defects kill more children each year...

Approximately 4,000 children die every year before their first birthday when they are born with a congenital heart defect (CHD)... Sadly, my Lily was one of them! 

Many heart defects can go undetected and it's critical that more screening be done! We knew about Lily's heart defect from 19 weeks pregnant and we all fought hard to save her life.. My Lily was a fighter like so many other heart babies.. sadly.. some just don't make it!

Some parents don't even know that their child has a heart defect until it's too late.. screening needs to be mandatory- not just an anatomy scan during pregnancy that can easily miss it! Screening once the child is born needs to happen!!

Did you know that Congenital Heart Defects kill more children each year than ALL childhood cancers combined?!?!

What seems like the right thing to do....

Can you imagine having a child and then hearing the words.. "I'm sorry.. There is nothing more that we can do..". You all have seen my photo album Lily's Friends on Heaven.. I guess if you ever think you are having a bad day.. trust me.. it could be worst ❤❤

When Lily was just 18 days old I had to tell the Dr's that we were ready to hold our baby so she could pass away.. Other parents have delivered babies knowing that they will never see them alive. Other parents have had perfectly healthy children until one day.. then there was nothing that could be done to save them.. sometimes the kids are older.. asthma attack, allergies, accidents, sickness..

It can be the hardest thing you have ever done in your whole life.. So many grieving people walking around in the world.. parents, spouses, grandparents, children, friends, etc.. if someone around you in the world acts a little sad, short tempered, quiet., different even... maybe there's a reason.. Just a thought ❤❤

Can you relate to what this picture says ❤❤

"I got my Lily Grace"

Can you believe this wonderful twist of fate..again?? Just a few months ago my family, friends, and I learned how to make hairbows to give out to sick children at the hospital (now called The Lily Grace Project: Hairbows for Healing). It is growing at such a fast rate which is wonderful because the bigger our hairbow mission becomes means that more children are receiving joy through hairbows!

So my family went to a holiday show around Christmas and stopped at a booth with beautiful hairbows, headbands, and dolls. They were admiring her hairbows (and looking to see how they were made) so they started talking to the owner of this booth. The conversation quickly led to my Lily Grace and our mission to honor her memory by helping to bring joy to other children through hairbows since she became an angel. By the time they left, the owner sent so many donations with them.. hairbows, headbands, and a beautiful monogrammed Ragedy Ann style doll that says “Never Forget Lily Grace” on the dress.

I mentioned that story before on Lily’s Facebook page and you can see pictures under my thank you photo album… so.. Let me tell you the twist of fate and how Lily is at work again.. this weekend a family member met up with the booth owner whose name is Beckie by the way. She needed to pick up some purchased items from Beckie when she shared the following story with her…..

Beckie’s daughter had her 3rd child recently (this past summer I believe-shortly before Lily was born) and if she was having a girl then her Mom Beckie was going to name her but she had a boy so that didn’t happen… Guess what she was going to name the baby… Lily Grace. No joke. Beckie’s grandma who taught her how to sew, which is how she knows how to do all of the dolls and hairbows, her name was Lily. So after my family left the holiday show Beckie called her daughter to say.. “I got my Lily Grace…”

Maybe Beckie should be my Lily Grace’s God Grandmother... like people have Godmother… Lily is at work again.. So many people are being brought into my life because of Lily and then there are connections like this… it is not coincidence.. ♥ ♥ ♥ ♥ ♥