2nd Lily Grace Challenge

It is that time again!! Lily Grace was a wonderful, sweet baby that is loved by so many and she also loved everyone back. She became an angel on August 29, 2012 and in just one week on Monday, October 29, 2012 will be exactly two full months from when our sweet Lily grew her angel wings and left us here on earth. To help make the 29th a better day, I want to challenge everyone to do something nice for someone else. This will be called "The Lily Grace Challenge" and this will happen on the 29th of every  month (modified for February). I'm trying to turn the grief that everyone is experiencing into more of a positive experience (as much as possible). So I challenge each and every one of you to participate in the Lily Grace Challenge. Tell your family and friends about it too. I challenge you to do at least one nice thing for someone else and this could be big or small. Just do anything that would help another person- plus you won't expect anything in return and if they want to repay you in any way just tell them that they can repay you by doing something nice for someone else in honor of Lily Grace. I want everyone to "Pay it Forward". It will make another person feel better, brighten their day but also make you feel better too. On Monday, October 29th I would like to know how many people participate so please comment on Lily's Facebook page (Never Forget Lily Grace) or simply write a comment on her blog.  You don't have to say what you did but you could at least say "Done Lily". I was so touched and amazed by how many people participated last month. The stories were truly amazing. I already know what I am doing.. My family and I are making our first trip back to Kosair Children's Hospital to give out hairbows to sick little girls in the NICU and PICU where Lily lived her entire life. This is what we have posted about previously and we call it "The Lily Grace Project". Thank you everyone! This Lily Grace Challenge will help to honor the memory of our precious Lily Grace on such a sad day for everyone touched by Lily Grace. Spread the word... Thanks everyone!

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

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

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

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

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

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

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

You can only imagine..

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

 Daddy and Mommy holding Lily as she just became an angel in my arms. 

We love you forever and ever Lily Grace! 

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

So many children gone too soon....

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

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

I feel so sad for the parents whose hearts were shattered before 

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

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

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

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

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

This is in regards to yesterday and last night (the post I wrote here on October 13th). I did have a hard night last night and I guess that was evident by my post. Shortly after I wrote that I decided to just go outside and sit in my back yard to just have a break by myself. M

y 6 year old daughter Makayla decided to join me. She asked if I was crying so I told her yes, that I just really missed Lily. So she then asked me to play hopscotch- we did and it was a fun distraction. Then I talked to her about how Lily is one of the stars above. So we tried to decide if she was the brightest star or if she was one of the lighter stars- there were so many light stars that I said it could be Lily and all of her friends watching over us.

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

Jacket for Lily... :(

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

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

y need a jacket.

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

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

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

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

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

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

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

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

Signs from Lily

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

Here is a sign that I got from Lily today.  I went to the funeral home to give them a thank you card along with a Lily Project Bow (to thank Schoppenhorst for helping us during such a tough time).. plus I had to pick up her death certificate and pay the funeral bill :(. So after an emotional visit to say thank you, I headed towards the front door to leave. There was a funeral going o

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

Happy 2 Month Birthday Lily Grace

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

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

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

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

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