We are so proud of our daughter Sarah.. Junior Ring ceremony/ prom...

May 15th: Lily is smiling down on her big sister Sarah (on left) and her sisters friend Erin (plus all of her other friends tonight too).. 

Junior ring ceremony at Louisville Male High School.. Junior prom this weekend.. and college around the corner 

It has been a very hard year for our family.. You make us all proud Sarah (and my other kiddos too). We are very proud of Sarah & her friends 

May 18th: 

Sarah's Junior Prom for Louisville Male High School on 5/18/13- 

Doesn't this look like an ad to prevent teen pregnancy? 

Lily's older sister is holding her niece Lyla who was born in January and her friend Erin is holding her nephew who is about 2-1/2 months.

I just loved how the picture turned out.. I just thought it looked like it could be one if those funny caption pictures...

I was sad that a third baby should have been there.. Our 9 month old Lily Grace..  Sarah could have held two babies for this picture 

P.S. don't you love Lyla's hairbow?!? Yes, our family made it!! Once we move this week & things settle.. I look forward to working on The Lily Grace Hairbow Project more 

Music can be healing.. the song list that helps me..

Please share with any grieving parent... 

Music has been important in my journey of having my daughter diagnosed with a serious illness and then losing her... I sang to my daughter while I was pregnant all of the time.. 

I also spent the last day of her life singing to her and letting her know that she is not alone... so music means a lot to me...  

Here are some of the songs I either sang to Lily while I was pregnant, while she was in the hospital, on her last day here on earth with us, songs that now mean a lot to me since her loss, since I have become a grieving parent, and I still sing to her now when I visit the cemetery or here at home.... I hope this helps someone else because when I am really, really sad.. this helps me.. 

Thank you for reading 

Ronan by Taylor Swift
http://m.youtube.com/#/watch?v=tvN7BOAQn9I&desktop_uri=%2Fwatch%3Fv%3DtvN7BOAQn9I

I Will Carry You by Selah
http://m.youtube.com/#/watch?v=pxZhEcTzn6Q&desktop_uri=%2Fwatch%3Fv%3DpxZhEcTzn6Q

Fly by Celine Dion
http://m.youtube.com/watch?v=-qVdFl64gt0&feature=related

You are Not Alone by Michael Jackson
http://m.youtube.com/#/watch?v=ito5ELbyyxs&desktop_uri=%2Fwatch%3Fv%3Dito5ELbyyxs

Somewhere Over the Rainbow by IZ
http://m.youtube.com/#/watch?v=w_DKWlrA24k&desktop_uri=%2Fwatch%3Fv%3Dw_DKWlrA24k

Beam Me Up by Pink
http://m.youtube.com/#/watch?v=PFYm9LKsuUo&desktop_uri=%2Fwatch%3Fv%3DPFYm9LKsuUo

and the song I sang to her ALL of the time.. even when I handed her over to her nurse after she passed away and I had to walk away from Lily...

I Surrender All
http://www.youtube.com/watch?v=6IAz9artoBw

Thank you...

Flattered, Thank you...

Thank you, I'm very flattered! Thank you to my sweet coworker Evelyn who wrote our local TV Great Day Live about the story of our Lily Grace & The Lily Grace Project! Thank you to an anonymous person who referred CNN to me about Congenital Heart Defects. Even if my Lily is not in a story, that's okay because I'm flattered that a wonderful person from CNN wanted to talk to me. I can't believe the kindness that people are showing towards me! Someone else mentioned that they were going to write Disney about Minnie's Bowtique show about The Lily Grace Project: Hairbows for Healing. What a dream that would be if Disney contacted us... all because of our sweet angel Lily Grace. Oh how I wish she was here though

Must read... "Sayings to avoid when a child dies..."

**MUST READ** Do you know a grieving parent? If you don't know a grieving parent now, I can guarantee that you will know someone in your life at some point that is a grieving parent... PLEASE READ.. 

Who is a grieving parent: this can be someone that has had a miscarriage, had a baby born sleeping, lost an infant, lost a young child, lost an older child or child at any age, lost ANY child (adoption, foster care, etc), and even someone who is unable to get pregnant and desperately tried..

This article is about what not to say and even though you mean well with the following comments... please don't say them and I have explained why before but this article does a fantastic job.. please share.. please read.. please, I beg of you..

“God has a plan.”
"At least..." (you have other children, you are young, etc)
“You’ll see her again someday.”
”Be thankful for what you have.”
“You should_____.”

Please read.. it can be very helpful.. I promise
♥
http://www.calebwilde.com/2013/05/23-spiritualized-comfort-cliches-to-avoid-when-a-child-dies/

1st Mother's Day since losing our daughter Lily..

1st Mother's Day for a Grieving Mom 

I couldn't prepare myself for how hard this day would be.. I can't even explain how hard it was.. 

I have shed so many tears yesterday and today.. if all tears from grieving parents were collected.. we'd probably flood the country 

I enjoyed my time with my kids here on earth and longed for my daughter in heaven.. 

Yesterday, I met my Moms wonderful nurse Sarah who happened to also be a grieving Mom and today is one year from when she lost her baby boy (multiple 2nd trimester losses.. ). 

So I decided to use my sad, sad energy today to type up a grieving parent resource sheet in hopes that it could help her.. her loss broke my heart... 

Mother's Day is bittersweet... 

I gave Sarah some resources today plus a Lily Grace Project hairbow in memory of her babies .. Guess what Sarah was wearing today? Fleur-de-lis earrings which means "Flower of Lily".. I think Lily had her hand in this.. Sarah didn't know that's what it meant.. what are the odds? 

Happy Mother's Day everyone!!  Prayers for all grieving Moms today and children who are missing their Moms too!!

Driving to the same hospital where I had Lily.. :(

Post on Lily's Facebook page May 10th:

I'm driving to the hospital where my Mom is having surgery soon to remove her cancer that was recently discovered..

The hospital is the same hospital where I delivered Lily, it's the first time that I can remember going back into this hospital since I had Lily, first time back in this hospitals parking garage...

Some of you will understand the anxiety that I'm feeling.. my first time back & firsts are soooo hard. Not only is it my "first" but the reason is because my Mom has cancer..

I'm here... Ugh.. Anxiety city., All of it.. too many reasons why this is hard..

Oh & this hospital is connected to where Lily lived her whole life.. there is a pedway that connects the two hospitals... So many memories... 

Prayers for my Mom... 

P.S. the flowers in this picture were a gift to Lily, her Dad, and I from Lily's paternal grandma's work (Lily's Grandma Darla).. They were beautiful flowers & I wanted to share 

Hospital waiting room picture at my Moms hospital.. right around the corner from her room  

Her surgery went as well as possible. Biopsy results to stage her cancer should be in by next Tuesday. The cancer did not spread to her liver, it did spread to one lymph node, and the doctor feels good about how the surgery went. 

She's in a lot of pain and she's on a morphine drip plus nausea medicine now. Thank you for your thoughts, prayers, and well wishes! 

Nurses... Happy Nurses Week.. Thank you!!

I posted this May 9th on Lily's Facebook page (Never Forget Lily Grace): 

Happy nurses week to all of the wonderful nurses that took care of my Lily Grace and that continue to care for sick children all over the world!!

This next statement may not make sense to some but it will make complete sense to others:

When you have a child or loved one with a terminal or chronically severe illness...the staff at the hospital, doctors, doctors offices, etc can become an extension to your family or so it can feel that way..

For the last 20 weeks of my pregnancy & then for Lily's entire life, I was getting tests, going to the doctors office, going to the hospital, seeing specialists and then practically living at the hospital.... it was such a big part of my life.

The day that my baby Lily passed away in my arms and I had to walk away from that hospital... that was unexplainable pain. Her nurses and the staff at Kosair took such great care of not only Lily but also of my family too. Lily always had 1-2 nurses assigned to be a one on one nurse (2 when she was on ECMO) so if you can imagine the bonds that a family can feel when they are living in the moment, hoping & praying that their child will live and they are looking to the staff for hope or even comfort when all hope is going away or gone..

Then they lose their loved one and what has become their life.. It is all gone at the same time.. It is such an incredible loss. You go from one all consuming situation to another.. dealing with a complete loss of everything..of your child!!! It's all gone.. everything that was connected to your last moments with your child.. it's gone.

So whether the nurses, doctors, or staff (therapists, chaplains, etc) realize it or not.. they are part of the loss too. In my eyes, they will always be an honorary family member and my Lily Grace will be their Guardian Angel. They fought for her to live as much as she fought to live and I'm thankful for that!

I'm sorry that I don't have a picture that shared all of the wonderful staff at Kosair!! Just because you are not in this picture doesn't mean that you don't mean as much to me, my Lily, and my family...

I am forever grateful! Thank you to all of the nurses (and other staff) out there that took care of my Lily, other angel children gone too soon, continue to care for sick children warriors now, and the nurses that will be taking care of my Mom tomorrow when her cancer is being removed!

Happy Nurses Week!! 

. Happy Medical Staff Week to everyone else too!!! 

Lean on Me?!?...

Lean on Me... Thoughts from a Grieving Parent..

When you are dealing with a BIG loss.. when you are in the midst of grieving a big loss in your life (child, parent, friend, spouse, family member.. it could even be a job, house.. independence if you are older or maybe you were in an accident.., etc).....

.... You really can't be someone's "rock" or someone's person to lean on (this isn't forever but this is for awhile I believe)....

... If you are trying to stand on your own two feet... trying to live life while dealing with a big loss... if you aren't strong enough for yourself yet then you can't be strong enough for someone else yet..

.... Of course your kids.. yes.. you don't have a choice.. you have too.. even your husband/ wife.. yes.. because you have too but mainly your kids because they are your kids and you are their rock..

... I sometimes feel bad for my family and friends because many of them are going through their own hard times but I can't be their person right now.. I am not strong enough yet..

..... I am functioning and doing better than I was for sure but this grief comes in tidal waves.. I think about Lily daily.. all the time... I cry every day at some point and some days.. it is like a tsumani when it hits me.. holidays, anniversary days, or triggers bring those ttidal/ tsumani waves on too...

... Stress makes it worse or when a lot of things are happening at once in my life (multiple different things in my life.. different areas of my life I mean)..

I share this song because since losing Lily I have really, really loved listening and singing this song.. It is very powerful for me...

"oh, there's a child
who is sick and begging to be free
but there is no cure for his disease
he looks up to his mother and
as she hold (holds)
prayin' that someday
the sun will shine again
and the pain?
and the pain will end
come on
i am here
you don't have to worry
i can see...
...your tears
I'll be there in a hurry when you call
friends are there to catch you when you fall
i'm your friend and i'll catch you when, when, when you fall
here's my shoulder, you can lean on me"

I just can't be the shoulder yet.. I can be there.. I can.. I just need to be my rock, my children's rock.. and Ricky's rock first..

Can anyone relate...does this make sense...or does anyone understand because of their own experiences of grief or loss in their life?

♥ I hope you take 5 minutes and watch this video.. thank you!

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

Hairbows... the little things that people sometimes take for granted..

Heart Angel- Lilian Grace

Our Lily Grace has a purpose in this life even though she left our arms way too soon.. I say "has" instead of had because her purpose still unfolds daily.

I saw this picture earlier and wanted to share. This is one of the first hairbows that the wonderful nurses at Kosair Childrens Hospital tied to Lily's wires and once we learned that we could put hairbows on Lily, it never stopped.

You see.. I couldn't dress Lily, change her diapers, provide normal daily care that a mother would do for her child.. but I could put a hairbow on her & that helped to make the situation feel a little more normal because that's what we do with our little baby girls.. we dress them up & hairbows helped me do that in our own special way...

Putting hairbows on Lily helped my family.. it made my daughter feel special (or so I hope) and it gave us normalcy.. so now my family & I do "The Lily Grace Project: Hairbows for Healing" to help other sick children in the hospital have some normalcy (a normal every day little girl thing- hairbows), makes the sick child feel special, and lets that precious child and their family know that they are not alone & that we are thinking about them..

Hairbows can symbolize so much more than people sometimes realize 

 I just wanted to share 

Special Surprise :)

 Special Surprise 

I had a very nice lunch today with other healthcare professionals. Lily was mentioned during lunch so I then said that whenever I see anything with Lily flowers on it.. it reminds me of my angel Lily.

A few minutes ago I received a knock on my door and there was one of the people that I had lunch with today... she saw Lily wall art at the store tonight, thought of my Lily, bought it for me in memory of my daughter, and brought it to my house (we live in the same neighborhood).

Of course I cried! How sweet and thoughtful was that?!?! Thank you so much Becky Goin!!

P.S. if anyone comes across Lily jewelry.. please let me know. The flower for May is "Lily of the Valley" and the flower for July is "Water Lily" so the best time to find Lily earrings is now. I've seen beautiful Lily jewelry & most people bought it last year during this time so I'm on the lookout. I am NOT asking people to buy me things but please, please tell me if you see it though 

Thank you so much Becky Goin!!

So true!!!

Can I get an Amen to this?!?!? How many of you can relate??

Happy 7th Birthday to Makayla!!

Posts on Lily's Facebook Page (Never Forget Lily Grace) on 5/4/13: 

Happy 7th birthday Makayla!!

Lily Grace Project donation: 

Thank you Bows by Brenda!! Brenda recently mailed me this beautiful surprise.. a box full of beautiful donations- plain headbands, headbands with flowers, beautiful butterfly hairbows, and assorted hairbows!! 

Thank you so much!!! 

"Bereaved Mother's Day"

Posted on Lily's page Sunday, May 5th:  

May 5, 2013 is International Bereaved Mothers Day

A few years ago an additional Mother's Day was declared. This Mother's Day takes place exactly one week prior to the traditional Mother's Day every year.. the International Bereaved Mother's Day 

Today's Mothers Day is dedicated to all Mother's that try so hard to get pregnant yet they are unable, that had an adoption fall through, that got pregnant but that pregnancy miscarried, that delivered a baby born sleeping, that lost a baby as an infant, that lost their child at an older age, and that lost a child in any way at any time...

Traditional Mother's Day is hard for Bereaved Mothers.. if we have children then yes we appreciate the day & love our children here on earth but one or more of our children are not here on earth with us and that's hard.. People may not be able to understand that and we are glad that they can't because that means they have never experienced such a loss 

Please take a moment to share this status with any bereaved Mom that you know, to tell them happy Bereaved Mother's Day, and to help honor any baby or child gone too soon.

Much love from the Mommy to angel Lily Grace  — 

NICU Graduate Invitation...

Lily's Dad told me that we got bad mail today but he wouldn't say why.. 

I just saw it.. We are on the wrong mailing list.. We love her hospital and we know it is an innocent mistake but.. Kind of hard to see.. 

I wish we could go to this.. 

We love you angel Lily Grace 8/11/12 - 8/29/12 



Here is the back of the postcard... I really don't think it was meant for us... it is all about NICU "graduates"... it's a celebration of sorts for all of the babies that made it home... 

**I still love Kosair Children's Hospital though... it was an innocent mistake**  ... just a little heart breaking to see, that's all 

"Good Enough is Good Enough"

Post on Lily's Facebook page on 4/30/12: 

Good Enough is Good Enough…

One of my children would get a B and I would talk to them about doing better…

My kids would do something and I would talk about how that was great but how could they do better…

Not all of the time but it happened…

You see.. I am a perfectionist and I had a “this is how I would do it mentality” and I was just trying to help but I realized that it wasn’t helping.. at all..

A little more than 4 years ago I went to school to be a school counselor and one of my professors did a lecture on “Good enough is good enough” and that changed my perspective on things…

You see… “good enough is good enough”..

Kids don’t have to be perfect, are we? No…. not at all so why would we expect them to be perfect?

We expect kids to never get color changes (or light changes for behavior), we’d like them to always get A’s and B’s in school, to sit & always listen when told to do something… to be almost a perfect child or person.. are we? No so why would we expect that from them.. a child?

Instead the question or comment could or should be.. “Did you do the best that you could do?”.. if the answer is no then “what do you think could have been done differently”.. Great job but next time try that… if the answer is yes and they truly mean it…. Then.. good job because good enough is good enough…

A grade of C is not the end of the world even if we are A students.. they are not us.. I just ask my kids to try their best and do their best. I tell them that I am proud of them and how much I love them all of the time. I try to give them as much love and encouragement as I can.. always.

Am I perfect? No… never and I know that… so yes, good enough is good enough and my kids are perfect the way they are…

Some kids are developing anxiety or never feel good enough because of the pressure that some people put on them… that they are never good enough even when they absolutely try their hardest… is it worth it? Is it worth causing your child anxiety problems because you want them to be perfect… no, not at all..

You never know what tomorrow or let alone the next 5 minutes will hold for you… will there be a tomorrow? Do your kids know how much you love them or how proud you are of them?

If they ask you to come play with them.. do you make time for them? I have been guilty of not stopping before and granted, we can’t always stop but we should make our best effort. The lecture and then losing my daughter Lily has forever changed me… try not to live for tomorrow or what you want them to be in the future.. love them for today, who they are, encourage them (to do their best or to be happy..), and help them love themselves...

If they feel that their Mom or Dad isn’t proud of them, that they are not good enough for their parents.. then what will that do for their self esteem.. will they ever be good enough in life?

Stop and tell your children that you are proud of them, that you love them, to always do their best, and that “good enough is good enough”…

 

Prayers for my Mom please

I posted the following on April 29th on Lily's Facebook page: 

Dear Lily Grace friends,

I need your help please! Two people special to Lily needs prayers as of today. One person is waiting for results from a biopsy that was done today.. not expected. The other person suddenly needed CPR to stay ali...See More

The other person is a dear, sweet friends Aunt.. this Aunt helped to get me a special gift in regards to Lily.. she helped to pay for a photographer.. the one who took pictures of my Lily from her birth to her passing... a gift that I will cherish forever. 

Will you please pray for both wonderful people? 

Then I posted this as a followup on May 5, 2013: 

I asked for prayer the other day because someone in our family was waiting for biopsy results..

That someone is Dixie Pifer, my Mom and Grandma to Dean, Maddox, Makynlea, Sarah, Ethan, Blake, Makayla, and Lily Grace.

This past Thursday we received results from a biopsy from her colonoscopy and they diagnosed my Mom with Colon Cancer. The doctor feels that it is really early but he can't stage the cancer until he performs surgery which will remove some of her colon, the cancer, and surrounding lymph nodes.

This surgery takes place this Friday afternoon on May 10th. May 11th my Lily would be 9 months old and Sunday May 12th.. Mother's Day.. it's already a hard weekend coming up and now this devastating news.

I am very hopeful as the doctor is very hopeful. We just won't know more until her surgery (i.e., the stage of the surgery, next steps, etc). She will be in recovery at the hospital for an estimated 5-7 days. Lastly, her surgery is called a right colectomy:http://www.mayoclinic.com/health/medical/IM00231

If you believe in prayer, please pray for our family.. it has been a rough year to say the least 

©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge | www.nzaPhotography.com 

Yes I am open about my grief but that is to help others and myself...

"No, I'm not like this all of the time!"..

My recent posts have been passionate.. then again many of my posts are open, honest, filled with emotion, and passionate.

I write this because some people only see what I'm writing, don't see me in person, probably don't talk to me between my posts, etc.. so this leads them to think wrong things..

Let me clear the air.. The sadness, emotion, passion, etc that you read on here- I'm not like that every minute of my life.. I'm functioning! Yes, I'm grieving and I write to release my grief when my grief is so heavy.. it does help me to get it off my chest and then I can move on in that moment.

I think some people think that I write and that I'm "stuck" like that but that's not true. I write to help me.. It's my form of journaling if that makes sense. I just "journal" publicly because it helps me as much as it helps other people.

I try to help other people with my writing too. Who am i trying to help, besides myself?? I'll tell you: other grieving parents, people who want to know what it's like for grieving parents, and so people can understand grieving parents more which will help them know things to say, do, and ways to help those grieving parents.

So for the record.. No, I'm not walking around 24/7 like in the way that I write if that makes sense.

Yes, I'm sad! Yes, I have bad moments! Yes, I do cry for my Lily! Yes, I do spend time and play with my other kids! Yes, I'm finally trying to enjoy life again! Yes, I can get really sad and it can be a short intense burst of emotion or it can linger with me but it's not 24/7! Yes, I miss Lily nonstop but I'm functioning.. I'm not pretending.. I'm just learning to live again without her!

It is hard! You can't fix me unless you give me Lily back..I'm not going to hurt myself.. I'm just express myself passionately.

I would appreciate it though if people are concerned that they ask me directly instead of asking other people.. sometimes that adds layers of unnecessary drama and stress for grieving parents.. we truly don't need any more stress in our life!

If you want to know how a grieving parent is doing, simply ask and be ready to listen. We may be having a hard moment so we may not answer then but we will... ask specific questions ("I notice that you write about.. that you say..they you seem..") and give examples if you we are not answering you the way you want.. 

Great book if your child receives a terminal diagnosis.. "The Gift of the Ladybug"

On April 28th I posted the following on Lily's Facebook page:  Never Forget Lily Grace

The gift of my Lilybug.. 

8 months ago today I was told by doctors that our Lily wasn't going to make it.. 

It's been 8 months.. Time just keeps passing without her & I can't tell you how incredibly hard that is.. 

I still cry for her everyday..

I miss her so much everyday..

My arms still ache for her everyday..

Nothing will ever take the place of my sweet Lily.. I could adopt 100 kids and she still wouldn't be replaced.. She'd still be missed..

Tonight my daughter Makayla was thinking about Lily and picked out "The Gift of The Ladybug" for me to read to her. This book was a gift from one of Lily's Facebook friends.

It's a sweet, touching story about how these wonderful parents (horses) had a baby that ended up being a ladybug instead of a horse like all other horse parents get.. That their ladybug baby was different and that their babies life wouldn't be as long as other babies.. ❤

It's a precious book.. Lily sure was a gift to all of us including her brothers and sisters too.. we all miss her.. ❤

http://www.giftoftheladybug.com/