Sunday, August 11, 2013

One year ago today...I was in labor to have you sweet Lily Grace..

My last post... before I lay down.. 
One year ago today.. at this time.. we were waiting (this picture is of her Dad and siblings waiting.. I took this picture from the bed where I was in labor) Lily always did things on her own time.. her delivery wasn't any different... 

She would cover her face up for ultrasound pictures or show us her face when she felt like it...

Her chromosome's weren't like other people.. she was unique and she didn't "read the manual" the doctors said  Lily was her own person from the second she started to develop..

A true fighter.. she beat so many odds..ultrasound after ultrasound she proved people wrong about how her "mosaic" chromosomes could effect her..

"Do you want to terminate".. can you imagine if I did that.. look at her.. look at what she did and how people say that her life changed them in her 18 days of existing here on earth and 9 months during my pregnancy....

She was worth it.. everything that this journey has put me through.. from the second of her heart diagnosis through her full journey of life through her first birthday in heaven... she was and always will be worth it..

I wouldn't change it for anything.. Happy 1st birthday in heaven sweet little Lily..

One year ago today at 11:08 am.. you "graced" us with your presence and started to change everyone else's life too.. you had already changed my life.. from the second that I saw pregnant on my pregnancy test... (which was exactly one week before we took our last family trip even to this day and that was to Disney World..).. I couldn't ride anything because I was pregnant with Lily and I didn't want to take any chances but it let me spend time with Lily in Disney World..

The chaplain at the hospital asked me to close my eyes and think of a day that is peaceful with Lily outside of the hospital.. I told her Disney World.. I would love to take all of my kids.. including Lily to Disney World.. where everything is magical and everything feels good..

If even for just the time you are there.. 7 days or however long the trip may be.. a magical place where everything is happy.. it's so peaceful and fun.. I so wish our journey would have been different so I could REALLY take you there sweet girl..

Your first birthday decorations are Disney themed of course.. it only seemed fitting..

Occupying my mind...

At 11:50 pm I wrote this on Lily's FB page (I'm adding more to this one at the bottom): In 10 minutes the date of 8/11/13 signifies my angel daughters first birthday..so..

To occupy my mind... I made a shelf specifically to hold spools of ribbon.. 

I've never made a shelf or any furniture from scratch before.. went to Lowes last weekend and bought everything.. This is the finished product (before sanding & painting it white)...

It's still wet with wood glue so I can't put too many things of ribbon on the shelf yet but I put some on for you to see how it will work..

This shelf will hold all of the ribbon for "The Lily Grace Project- Hairbows for Happiness"

**I'd like to thank Pinterest for this design (crown molding on the edge of the shelves to hold the ribbon on the shelf)..

I'm working to make it easier to make hairbows in my house.. This shelf goes in my Lily Grace memorial/ hairbow craft room... I'm on my way 

Happy early 1st birthday Lily Grace... RIP 8/11/12 - 8/29/12 

**It is just so unbelievable.. I can't believe that it has been one year.. I can't believe how hard this is.. It has been raining here and I swear.. I feel like the rain is coming from the tears that I have been shedding because I have been crying so much.. it is so hard.. my heart physically hurts like it did when she first passed away.. It is so unbelievable.. 

So I am going to finally go to bed.. try to sleep... wake up and start cleaning for her mini birthday party... 

I don't even know what to do with her candles.. do we sing?  Who blows it out?  It sucks that we even have to think about it..  

Saturday, August 10, 2013

One year ago today... admitted to hospital to have our Lily Grace

One year ago today around 4 pm, my doctor sent me straight to the hospital to be induced right after my checkup... 

I had a hospital stay a few days prior to this.. August 10th was on a Friday & Lily "graced" us with her presence the next day on Saturday, August 11, 2012... (original due date was 8/21/12)

I can't believe she will be one tomorrow..

Please remember Lily tomorrow.. here is a link to her remembrance: https://www.facebook.com/events/143658955840791/


**For those that want to print their own Lily Grace balloon tags.. here is the link http://www.slideshare.net/elzya/lily-grace-balloon-tag-august-2013?fb_action_ids=10152084958445828&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582

Balloon tags for Lily's 1st birthday balloon release..

I shared this on Lily's Facebook page on Thursday, August 8th:
Sad night... BUT... on a positive note.. Look at the tags that I made (with adjustments & printing by Able Printing in Louisville, KY)... 

This is a front & back view of the tag that will be attached to all of Lily's balloons at her first birthday balloon release this Sunday 



Thursday, August 8, 2013

Sad night ;(

Sad night... her first birthday is so close.  Ricky, the kids, and I went to visit Lily at the cemetery... sad night is all that I can say... I would never wish this upon anyone.. not even the most evil person in the world.

My heart hurts.. physically hurts from losing her like it did when I first left her.  It's just so heart breaking.  I told her Dad that I just want her back and she is not coming back to me.. she won't come back..

That's all that I want right now.. ALL of my kids.. that's what I want..

Monday, August 5, 2013

August is here.. ugh.. that means that all of the big "one year"..firsts are coming up this month :(

This is how I felt on August 2nd (this was not shared on my public Facebook page): 

August 11, 2012 my Lily Grace was born, five days later she had open heart surgery, then ECMO, caths before & after surgery, scares galore... Such an emotional journey from her diagnosis at 19 weeks pregnant.. then the worst day of all August 29, 2012.. the day she became an angel in my arms 


Yesterday on August 1st... that was an exceptionally hard night.. 

I can't believe August is here already.. I can remember everything like it was yesterday- the dr sending me over to get admitted to deliver (the day we anticipated for so long).. It feels like she was just placed in my arms after birth and yet again to pass away once ECMO was turned off... 

August sucks I guess.. I guess it's a big fat slap in the face of reality.. I know she's gone but one year?!?... Ugh.. Her first birthday?!? Ugh..

I wish I could take off work & relax with my family for the month of August <3

Lily's First Birthday in Heaven- will you remember her?

Lily Grace was born on August 11, 2012. It was a beautiful day that I will never forget. Sadly, Lily lost her battle to a heart condition called Hypoplastic Left Heart Syndrome (HLHS) at just 18 days old on August 29, 2012. 

She was a fighter and I wish that she was here to celebrate her first birthday with us! We would be throwing her a big birthday party! She is not here though so I feel that I need to "create memories" for her because she cannot create her own memories. 

On Sunday, August 11th I would be honored if you would remember our angel, Lily Grace. Will you release a red balloon (or any balloon that you like) in memory of Lily and in honor of her 1st birthday? -or- If you make hairbows, will you make hairbows in memory of my angel Lily Grace and all other children gone too soon?

We have a hairbow project where we donate hairbows to sick children in the hospital called "The Lily Grace Project". We will be making our next trip this month. If you wanted to donate those hairbows or any other hairbow supplies or anything to help with our project in memory of Lily.. I would greatly appreciate it and so will many, many other families & children!

Even if you will simply remember my Lily on August 11th.. I will appreciate it. I would like to invite my family, friends, and anyone else that would be interested to release balloons with us in the Louisville area at Lily's cemetery spot on Sunday, August 11th at 6:30 pm.

She is buried in the babyland section (very back left section) of Evergreen Cemetery on Preston Highway in Louisville, KY. I opened this up to other people because I had a few people ask.

**Please share pictures if you so wish.. thank you for the support everyone**
Here is a link and more information for this event: https://www.facebook.com/events/143658955840791/

Your first birthday is almost here Lily Grace..

Posted this on Lily's Facebook page Sunday, August 4th: 
One year ago today.. 

I was just one week away from having Lily.. It was a time full of excitement, anxiety, and simply just being nervous about what the journey ahead would be like (with Lily's surgeries, caring for her medical needs, splitting time between home & the hospital, etc..)

Our path took a different turn.. BUT I would NOT trade having Lily for anything.. She is worth it!!

So next Sunday is Lily's first birthday.. My family and I will be releasing balloons in her memory.. Kind of like sending birthday balloons to heaven for Lily to catch 

Who wants to release balloons for Lily?  I'm hoping to have a tag made to attach to the balloon so whoever gets the balloon learns about Lily..

Then on her one year angelversary I want to release lanterns so "Lanterns for Lily" on August 29th.. I'll post more about both dates soon 

**Also... we will be doing a hairbow party in memory of Lily so if anyone else wants to do a hairbow party that would be great too  and if you would consider donating those hairbows to "The Lily Grace Project".. that would be SO helpful as we will be going back to Kosair Children's Hospital this month to make in person hairbow donations in memory of Lily 

Why I share my grieving process..

Thought I'd share this because some people don't understand why I share my grief online (Lily's Facebook page: Never Forget Lily Grace, this blog, etc) or why I'm a part of online grieving support groups.. It's just too much to keep inside for one thing and sharing Lily along with my complete journey of her diagnosis, having her, and sadly losing her.. It helps me to share!

People need to remember though that just because I share my grief in words online doesn't mean I'm living that way 24/7.. That makes no sense..

Getting things off my chest helps me to function.. My words on here are not a reflection of how I am 24/7.. It's just a glimpse into moments.. if that makes sense.. I always miss her.. every minute of the day but you just live with that grief just like so many of you live with your grief... you have it.. It's there & it will remain there forever in one way or another. There are good & bad days, hours, minutes, seconds... but you are making it & functioning..

I'm no different.. I'm just open about my grief.. That's all ❤ (Next part is from a Facebook group called: Silent Grief- Child Loss Support):
Why do we have online support groups for the bereaved? Some people just don't see a reason for this and think it's a waste of time. To the bereaved there are multiple reasons for places such as this to come together. There is support. There is a feeling of community. There is a sense of being loved. And, there are people who can truly understand. Why do we have online support groups for the bereaved? Because we know that everyone here understands the deep, intense, ongoing pain of child loss! And, having one's pain validated is often the best support that can be given!

What to say to a grieving person...

Isn't this the truth ...

Please learn from this (I've written about this before too)..

If someone loses a child then say "I'm sorry", "I don't know what to say" (that's even better than what most people say), "I'm here for you"..

Here's what I like the most: "I'm sorry, I'll never forget XXX".. So for me "I'm sorry, I'll never forget Lily"..

We have an overwhelming, anxiety causing, HUGE fear when our child passes away that "what if people forget them".. For me "what if people forget Lily Grace"..

That is a horrible, horrible thought.. For me.. Lily means the world to me & so many people didn't get to meet her because her heart was so sick and she was so young..... So that's exactly why I started this page..

Don't say "Be positive", "Don't worry..", "God needed another angel", "it's Gods plan", "she's no longer suffering", and On & On.. Please stick to what I said up there.. I know the majority of comments from others are meant from a good place but.. sometimes it can make things worse.. We are just not in a good place to hear those things..

YOU CAN'T ...explain it or reason it away. You don't know so why guess or try to figure it out? A child dying (at any age) makes no sense.. NONE.. No need to rationalize or analyze it..

Please learn from this.. Please read... Please share.... (below is from FB page: Silent Grief- Child Loss Support):
Sometimes people will say things to bereaved parents that hurt so much, but the intent was to sincerely help. They will make comments like, "Time heals all things. At least you had some time with your child. Think of the fun times together -- don't remember his/her death. Focus on the future, not the past. This was done for a reason -- look at what all you've learned." And, on and on and on it goes. What is really needed to help those grieving the loss of a child are fewer words and more shared tears, listening ears, and a much more supportive friendship. When a child dies, our world as we knew it is forever changed. Missing our child is forever. Time doesn't heal those things. Listenening, non-judgmental ears are a blessing and a comfort. A person will NEVER know what it feels like to miss a child so much you want to die until you've been in that situation. Therefore, others have no reason and no right to tell the bereaved how they should or should not grieve the loss of their child. Child loss is a pain that cannot be explained in human terms. It hurts too much!

Reminders to check on a grieving person...

Posted this on August 1st on Lily's FB page: 
This is so true.. I think there needs to be a website developed where you put in the date of when someone passed away and then it sends you automatic reminders to check on people & it will also give you ideas on what you can do- cards, meals, a simple phone call even...

Sometimes I get cards in the mail at random times and it means the world to me.. I hope you take a minute to read (I think this goes for any type of loss.. not just child loss).
FB page: Silent Grief- Child loss Support:
Immediately following the loss of a child there seems to be a lot of support -- cards, food, phone calls, visits. However, within just a few short weeks, this type of support tapers off to almost nothing and that's when families of loss need support even more! When the reality of the loss settles in, the pain the heart feels is difficult to explain. It is a screaming, crying, sobbing, throbbing pain that makes us feel like we can't breathe and we can't get through another minute. If only others understood how important it is to offer support weeks and months (and years) following child loss! Some days feel unbearable! May God bless each family of child loss with special moments of peace today

Friday, August 2, 2013

Best song for someone grieving "Dancing in the Sky"

**The MOST beautiful song.. so worth your time and please share** 
PLEASE take the time to listen.. it will mean a lot to you and someone else.. ♥

"What does it look like in heaven
Is it peaceful.. is it free like they say.. 
Does the sun shine bright forever..
Have your fears and your pain gone away...

I hope you are dancing in the sky..
I hope you are singing in the angels choir..
I hope the angels know what they have..
I bet it is so nice since you arrived...

Now tell me what do you do up in heaven..
Are your days filled with love and light.."

http://www.youtube.com/watch?v=YNoLJy68ZcE

Sweet Lily you have been gone for 11 months.. Poem that I wrote "Don't judge me by my grief"

**I wrote the poem below and shared it on Lily's page.. I mean it for me and for ALL other grieving parents out there.. **

On 7/29/13 I shared:  July 29th was exactly 11 months from when my sweet Lily Grace passed away.. I shared this poem, talked about The 11th Lily Grace Challenge (where you do something nice for someone else), etc.. here it is:
Today at 3:30 pm my daughter Lily Grace will be gone for 11 months....

The time keeps passing by just like it does for so many other parents that have lost their child or for someone that has lost a parent, sibling, friend, spouse, etc..

Today, will you please do something nice in memory of my daughter and so many other people gone too soon? If so, please click this link to join "The 11th Lily Grace Challenge" https://www.facebook.com/events/491521797592965/

Thank you and this photo is worth repeating...  I hope other grieving parents find this picture meaningful too.. God Bless you and your families... Life is short and it can change in the blink of an eye.. Please be nice to each other and Let the Lily Grace Challenge begin 


On July 29th I also shared this:


Eleven months ago today around 3:15 pm on August 29, 2012 the caring staff at Kosair Children's Hospital unhooked you from machines to be placed in my arms..

In my arms I would hold you as you looked around and looked into my eyes & your Dads eyes..

At 3:30 pm you officially closed your eyes & took your last breath in my arms..

Never forgotten.. Forever loved.. Always remembered..

RIP sweet Lily Grace 8/11/12 - 8/29/12

Thank you to everyone participating in The Lily Grace Challenge.. It's never too late to do something nice for someone else.. Today, tomorrow, and forever... 

Lily was actually a part of me.. she can't be forgotten.. I can't move on from her..

Post on Lily's Facebook page from July 24th:
Does society ever ask or wonder if a person is over the loss of their spouse or parent yet? Or if they've bounced back from losing their spouse or parent??? I don't think so or not from what I've ever seen.. 

Does society ever wonder that about a parent that loses their child? People say "losing a child is the ultimate loss" yet their words or actions speak the opposite of that when judging how quickly a parent should be over their loss or even how a grieving parent grieves..

Just for the record.. I'm doing ok... I'm just expressing myself on behalf of so many misunderstood grieving parents..

Sometimes people think that when a person expresses their grief that they are "stuck" like that all day and night.. That is a total misperception..

Expressing yourself allows a release so you can move forward or function like everyone else..

Our grief or grieving process doesn't define how we are living but rather it's a part of the journey that we are on because we suffered a big loss.. A loss that we will NEVER "get over" or "bounce back" from..

It's quite ridiculous to think that a parent will get over the loss of their child.. you wouldn't expect a child to get over losing their parent or a spouse to get over a husband or wife that passed away..

Whether you created your child or adopted your child.. your child was interwoven into your life FOREVER... they will never disappear...

Grieving parents learn to "adjust" to a new life without their child.. they won't bounce back or move on.. They just learn new ways of living & to expect anything different is crazy..

We are not crazy... we are in a learning process.. I hope you never understand our journey & always remember to not judge others when you have not walked a mile in their shoes..

You can speculate and make assumptions but that doesn't make you more knowledgable about our situation.. it's just a guess.. that's all 


Then on July 26th I shared this: 
I can't believe Lily would be celebrating her first birthday two weeks from this Sunday... August 11, 2012 was the day she was born... a beautiful day that I wouldn't trade for anything...

The time that I got with her.. the 9 months for my pregnancy and the 18 days that she graced us here on earth after she was born.. she was worth any pain or sadness that I have experienced or continue to feel...

She is missed beyond words.. FLY sweet girl.. ♥

http://www.youtube.com/watch?v=-qVdFl64gt0


Dusty pictures...

July 22nd I posted this on Lily's Facebook page: 
Dusty pictures... 

This may not make any sense to some of you and sadly.. perfect sense to others.. 

We've been sanding walls and this has made the house dustier than normal.. it makes sense that pictures would get dusty, right?? 

BUT.. I've never seen my angel daughter Lily Grace's pictures dusty until this past weekend..

When all you have left are pictures and other material things after the loss of your child (and I'm assuming a spouse, parent, etc..) something as simple as their items getting dusty can be a real trigger to a grieving person..

Why.. to think that pictures are the closest thing you have to seeing them and for dust to form on the items (from sanding or just time) is heart breaking.. It's just another reminder of how much time has passed since they left this world..

In one week from today our daughter Lily Grace will be gone for 11 months.. enough time for dust to start settling on her stuff.. What a sad reality.. 



Then I will share a few more pictures that I put on Lily's page:

I can tell you that losing a child is 100 million times worse than you can dream or imagine that it would feel like... 

I know... for 20 weeks prior to my daughters birth I had to face the reality that she may not make it so I had to face that... 

I can tell you that I had NO idea how it would really feel or effect me..

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

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

Sweet Lily right after birth..

Posted on Lily's FB page July 19th:
This was the first few minutes of Lily's life... I'd say of her story but her story began way before her birth.. 

She was a beautiful baby with a head full of hair.. and she was a fighter from the first minute..

she fought hard for 18 days after she was born but she was a fighter long before she was born too because she fought to stay alive for the 9 months that she was living in my belly too... ♥ RIP sweet girl.. ♥

Never Forgotten sweet Lily Grace 8/11/12 - 8/29/12

Music and more..

Posted on Lily's FB page on July 17th:
Picture says it all... 

This picture could represent the loss of a child for many reasons..

* custody issues
* kidnapping/ missing child.. 
* child ran away...
*... or your child passed away..

Those absences create obvious voids... again.. this picture says it all 


---------------------------------
Then on July 19th I posted about music (again :)
I've always loved Canon in D.. most commonly played at weddings.. I think it is just an absolutely beautiful song and I think this version is a really unique twist to the song...

This song makes me think of a soothing place.. a soft.. beautiful..safe..soothing place.. maybe the kind of place where Lily and so many other angels play... I can't explain it..

I just felt compelled to share it.. warning that the video is corny but 5 million people have viewed it.. the music is so worth listening to it.. Enjoy

http://www.youtube.com/watch?v=LV5_xj_yuhs


http://www.youtube.com/watch?v=jXC9tuumjiA Another cool version.. more classical and sooo beautiful! It's played on the guitar which I thought was really neat..

Here's another classic that I love.. Ave Maria.. can't get enough of that one too.. here is a very classic version: http://www.youtube.com/watch?v=aQVz6vuNq7s

 Then I feel compelled to share the real classical version.. I can't get enough of this song.. I can close my eyes and just listen to this over and over.. sweet thoughts.. beautiful memories.. hope.. love.. peace... it is just so soothinghttp://www.youtube.com/watch?v=hOA-2hl1Vbc

Lanterns for Lily..

Posted on Lily's Facebook page: Never Forget Lily Grace on July 15th: 
Lanterns for Lily 

I've been thinking about releasing balloons and releasing sky lanterns in memory of our Lily... Someone around our neighborhood released some lanterns tonight.. It was so beautiful.. I've never seen them in person before..

Her first birthday would be August 11th and her one year angelversary is August 29th...

I'm going to do both but just not sure on which date.. Maybe balloons during the day and lanterns at night.. Not sure yet but..

Lanterns for Lily has a nice ring to it 


---------------------
Then on July 16th I posted:
Why does society stay hush hush on grief and their grieving process..especially in the way they judge a person that is grieving... Hmm..

I feel that if you're open about your grief then people assume you're doing worse than someone who stays quiet about their grief... I find that very interesting because if you really think about it.. how is bottling up your grief better than releasing it??

Any thoughts on this topic? I'd love to hear from you...

Lily Grace hairbow..

Posted on Lily's FB page on July 14th:


No.. This is not my ultrasound but this is an ultrasound of a very special person..

Our Lily had some very special nurses at Kosair Children's Hospital and one of her very special NICU nurses by the name of Jill is now having a baby...

Why am I sharing her ultrasound picture you ask... well she just announced this week that she is having a girl. She announced by sharing this very picture on her FB page.. notice the hairbow?

I gave many of Lily's special nurses a hairbow to thank them for trying so hard to save our sweet girl.. the hairbow in this picture is her Lily Grace hairbow..

Lily and this hairbow must really mean something special to her since she wanted to announce that she was having a girl by including our Lily Grace hairbow and it was so special for me to see this... thank you nurse Jill!!  She was blessed to have Jill and so many other wonderful nurses at Kosair  I'll never forget them.. never!

Sea Horse..

Posted on Lily's FB page on July 13th: 
Sea horse... 

For those that don't know.. my Lily Grace had a toy sea horse by her side at all times (except for her heart surgery).. to play music, light up, and try to soothe her... 

Thank you Lisa Warren for sending me this message! Your Lily Ann is beautiful.. thank you for sharing this:

"My husband I and started following your page about your daughter awhile back. We looked through all your photos and couldn't help but cry. Our daughter, Lily Ann was born Sept 20th and she too loves her seahorse. We cried because we felt so sorry for your loss, so sorry that your Lily had to endure so much in her short life and it really made us appreciate our daughter that much more that she was healthy. I just wanted to share this photo with you because it always reminds me of your daughter when I look at it. I've read all your posts and realize the grieving is far from over, I was just hoping that maybe my Lily could put a smile on your face, even if for a second. Your family is in our thoughts and prayers. God bless." **Yes her baby is doing very well.. she is fine**

I hope it's okay that I shared your message Lisa.. it was too beautiful to not share your message and picture.. thank you for getting to know my Lily and thank you for thinking about us! 


------------------------------------------------
Interesting.. I just posted about how losing a child is made up of such extreme lows and then highs.. Back & forth.. The smallest thing can be a trigger.. This is a great read ❤ 
This is from the FB page: Silent Grief- Child Loss Support:

"Am I crazy?" is a question almost every parent of child loss asks. Why? Because we've never experienced such a wild, erratic range of emotions before. We feel anxious. We have mood swings. We burst into tears at the most odd times. We feel broken. We are afraid to laugh. We are over protective. And, our minds work constantly -- always thinking about our child. Are we crazy? Absolutely not! This is all quite "normal." When a person goes through the pain of losing a child, the trauma shakes us to our core, and it is a slow, painful walk to get to a place where we feel somewhat leveled out. How do we explain this to others? We shouldn't have to carry the burden of explaining. Common sense tells us that this is a loss that turns our world upside down and inside out and it's going to take a lot of work to walk through the hellish pain of losing a child. God bless every parent who has lost a child with a "special peace and calm" today.


Saturday, July 13, 2013

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