Lily is still traveling...

Lily's big sister Sarah surprised me today with this picture... 

She went to Chicago with her friend and she surprised me by taking a picture of Lily with her and texting me this picture.. 

She wanted to take Lily Grace to Chicago... Ahh.. I'm so proud.. Thanks Sarah!!

Here are a few more travels that Lily did recently...

Wow.. she traveled far again!! Thank you to a dear friend Margaret Wilson Pentecost! Here is picture one! 

She writes: "These were taken on the Cancun Riviera in Mexico. I was happy to be part of Lilly Grace's life, and I'm also happy to share these with you. Prayed for all of you while writing her name and shooting the pics."



Wow.. Lily is traveling far!! Thank you Kelli Schlensker Stines!! She shares:

"Hi, I want to let you know I have followed Lily Grace and my heart breaks for you. I sent your message to my friends all over the world and have one shared by my friend Adele from Rhyl North Wales , UK"

Thank you Adele!! Wow.. North Wales!! That is amazing!! 


Thank you Sydney Hadsell Litzenburger!! She writes: 
"To Lily, with love, from Conneaut Lake, PA"



Thank you Brooke Meffert... here's what she said: "Here's the pic of sweet Lily's name in the sand at beautiful Siesta Key, FL (and it's the #1 beach in the US)!!!"

Lily's Open Heart Surgery Picture... :(

Posted on Lily's Facebook page "Never Forget Lily Grace" on 7/11/13:
Heads up.. I told you within the last few weeks that I would be sharing a picture of Lily after open heart surgery... I haven't been ready but I am.. It's graphic but it was our reality & so many other heart families reality too... Check back

Happy 11 month birthday Lily Grace.. I can't believe you were born 11 months ago today 

Our Lily Grace before and after open heart surgery.. 

Open heart surgery is a reality for so many, including our Lily Grace.. 

Lily had up to an 80% chance of survival and many children that go through open heart surgery have an even higher survival rate so many kids can look like this and still survive while living a life with high quality.. 

You could see her heart beating through that plastic and yes.. her chest is left open.. The plan was to close it after a few days but it was never possible..

This is just a glimpse into what heart families may experience.. Most families have a more positive outcome than our precious Lily.. she fought hard & so did the doctors, surgeons, and nurses for her to survive.. Her body just couldn't make it... she was a puzzle..

Her scans showed strong heart function yet she couldn't survive without the extra support.. It was a big roller coaster of ups and downs..

When she went into cardiac arrest and her heart stopped (twice).. They had direct access to her heart to save her.. It's unbelievable.. I have video too and you can see her heart pumping..

Happy 11 month birthday in heaven sweet Lily Grace

Lily's bathing suit...

Significance of dates with grieving parents... 

One year ago today I was one month away from having our daughter Lily... she was coming so soon.. I just wanted to hold her so bad & tell her that it would be okay and let her hear me say that I love her in person (I told her all of the time while she was in my belly).. 

Today our Lily turns 11 months old in heaven... 

This monthly birthday is hard because that also means that in just exactly one month my Lily should be having her first birthday.. Her first birthday in heaven is going to be exceptionally hard..

The significance of July has been unexpected.. It represents that my Lily would be one next month.. that it will be one year from when she loved at Kosair & had her open heart surgery and the worst part.. That next month represents when Lily became an angel.. When my life was forever changed..

July represents how close I am to all of the big one year events.. Her birth, surgery, and passing.. August is so close..

Happy 11 month birthday sweet angel! Your sister found a few bathing suits that she said we would have bought you if you were still here.. A bathing suit with sea horses is our favorite because sea horses mean a lot to us since you passed away.. The striped one would be our favorite if you were still living..

We wouldn't need the symbolism if sea horses so much if you were still here.. Happy birthday precious Lily!!

I'm going to release balloons or lanterns on her first birthday August 11th & again on her angelversary August 29th... Also have some modified birthday/ memorial party with family on August 11th.. She still deserves a celebration of her life 

Angel

Post from Lily's page on July 9th:
Siblings of an angel 

Lily's 7 year old sister Makayla drew this for Lily... Here's some recent thoughts from Makayla: 

"if a genie asked me for a wish... My wish would be that Lily never got sick & that she didn't have to die"

"Whenever it's Christmas... I'd put on my Christmas list that I want you to get a ladybug" (ladybugs are a symbol for our Lilybug)

"Are you sad because Lily died and Teri's Dad died" (their great grandpa Leo just passed away recently)? Yes I said but don't you think he's taking good care of Lily... she said yes but when you die you could take care of your daughter yourself.. Right? But Mommy we don't want you to die.."

Sad night.. Can you tell... This wasn't even said tonight (said recently but not tonight) but I'm just having a hard night... 

Lily's room...

An angel deserves a room too... 

We moved and I have a room reserved for Lily. Half of it will be a memorial sitting area and the other half is for our hairbow project. 

I wanted to share a few things that I found for her room.. beautiful white curtains (looks like it belongs on a wedding dress), an aqua colored lamp that has sea horses on the bottom and a sea horse on the very top, a sea horse statue decoration, and we are making a sitting/ storage bench for people to visit on or read on...

Lily had a sea horse by her side from day one so a sea horse has significance to me now... She had this toy:http://www.amazon.com/Fisher-Price-Ocean-Wonders-Soothe-Seahorse/dp/B0083IXKYE

The doctors and nurses let us keep it by her head and we played the music nonstop to help soothe her.. it was the one way that we could try to make her feel better.. if you would have told me that I would have been decorating with sea horses one year ago.. I would have thought you were crazy but here I am..

My daughter Lily's room is painted in a pretty aqua smoke color:http://www.homedepot.com/p/BEHR-Premium-Plus-Ultra-8-oz-470E-3-Aqua-Smoke-Interior-Exterior-Paint-Sample-470E-3U/202182329#.UdtqFfmshkU

It's the least that I can do for her.. I just wanted to share... Maybe it will be done by her first birthday on August 11th 

1..2..3..4..5...

Posted on Lily's Facebook page "Never Forget Lily Grace" on July 2nd: 

My mind says that my daughter passed away 10 months ago on 8/29/12... 

My heart says.. "no.. that can't be.. it feels like yesterday that I was holding her, kissing her, touching her.. I remember EVERYTHING..the sounds.. the beeps.. the medical staff.. the scares.. the happy moments.. the extreme roller coaster up & downs.."

The calendar keeps changing.. day by day goes by.. further away from when my Lily Grace was here.. My heart doesn't want to believe it.. my mind knows that it is true.. and my body is just left confused...

Grieving the loss of a child almost makes you feel moments of bipolar.. happy.. very sad.. guilty for feeling happy.. not so happy.. very sad.. stressed.. sad.. up & down.. up & down..

You just want to wake up from this nightmare & say.. whew.. oh my gosh.. that was the most horrible dream ever.. let me go count my kids... 1..2..3..4..and 5.. they are all here..

But reality is harsh.. it doesn't lie... 1..2..3..4...and Lily's still not here... 

Someday...

Posted on Lily's Facebook page on July 2nd:
Some days & nights are just more difficult than others... 

It's 2 am... so you can guess how much I have Lily on my mind right now... 

July 1st coming was hard on me... You see... July is just one month from August.. I just can't believe that our sweet Lily would be 1 so soon... and also that she will be gone from us fog one year at the end of August... So July isn't really my friend...

July is the month of reminders so far... I just can't believe it... It's not a nightmare.. It's not a dream... Instead.. It's my reality... my daughter really did leave us here on earth without her....