Remembering Gracie

A lot of people have asked how our kids are doing. I think they are actually ok, all things considered.

This is a picture of one of the scrapbook pages from Gracie's funeral sign in book. When we got home from the funeral, this one was blank and Callie asked if she could draw on it. I thought it would be a cute thing to look back on in 5 years so I said yes. She drew a picture of each member of our family and said "I'm pretending that this is Gracie in her dead case". If you look closely at the picture, she drew a rectangle around Gracie. How sweet are the words of a 5 year old who just lost her only sister. Just precious.The above picture was taken on February 3rd, almost one month to the day she passed away. It is just one of the many times Callie would join in on whatever Gracie was doing. Callie decided to lay down on Gracie's blanket with her and cover them up with another comfy blanket. Oh how I will miss those days............

Surprisingly, Callie has been the one who has vocalized her missing Gracie the most. I think that comes from being home with Gracie and I every day except when she was at preschool. I don't think I realized how much she bonded with her during that time. This is a little bit of a conversation we had the other day:

Callie said, "I wish I could be in heaven with Gracie. But you're kind of getting old huh mom? She wasn't supposed to die because she was a baby. She was supposed to die when she was a grandma. Because your hair is a little bit gray huh mom? But if it was all gray, you would be a grandma." (Apparently it is time to color my hair!!)

Sweet Taylor. This is the 'Gracie Shrine' that is on the floor in his room. My little 'middle child' has a tender heart. He's a collector kind of kid and has been asking to keep different gifts, plants and pictures that we have received. He just keeps adding to his collection and as you can see, he arranges it just perfectly! So cute. I love that I will have this blog (and printed book version) to show my kids every detail of what happened, what they did and how they felt. I think it will be something they will treasure for years to come.

I wanted to let you all know that I have received your emails and read the comments on my blog and although I don't have time to reply to all of you, I thank you from the bottom of my heart. I save every email and will print them into a book someday. Your thoughts, prayers, and words of encouragement have been uplifting and make me feel like Gracie will not be forgotten. I appreciate the cute little notes and gifts on Gracie's grave. I appreciate all of you for realizing that our pain is not over and will take a long time to heal. Sometimes I think it gets worse with time. There is so much going on in the first few weeks with planning the funeral and visiting with friends and family in the days/weeks afterwards. When the dust settles, it can become lonely and a lot harder.

And every day is one day farther away from the last day you spent with your baby. That's the hardest part about time passing you by.

I read a quote off another mom's blog about grieving and thought it was very appropriate. It said:

"Bereaved people are like ducks above the surface.....looking composed and unruffled, below the surface.......paddling like crazy." --unknown

So very true.

Donate to Life

Donor Services has treated us really nice. They sent this mounted certificate in the mail along with a nice letter of appreciation for Gracie's donation. Then they sent a packet with grieving books, a donor pin and some bereavement information. A very nice touch.

I waited to post any details about Gracie's donation and here is why. The day before she died, they told us that they would be able to use Gracie's liver and kidneys. We were happy about this and knew that they were both important organs and felt like it would be worth not being able to say goodbye like we wanted if we could help two people out. The next day (the day she died) we were informed that something had happened to the liver recipient and they would not be able to use Gracie's liver, only the kidneys. They told us that infant kidneys are hard to transplant and that there was a possibility that they would take them and the receiving surgeon may get them and choose not to use them for various reasons. This of course made the whole situation even harder but we felt like we had to at least give someone a chance even if it didn't work. They informed us that they would send us a letter in the next few weeks with the details of the recipient and if they were able to use her kidneys. I received the letter several days ago and according to the letter, they were able to use them!! Her kidneys went to: (and I quote the letter)

"Gracie Jean's kidneys were given to a 49-year old California woman. She has a 12-year-old son. She teaches at the YMCA. She has a brother she is very close to, as well as friends and family from whom she receives a lot of support. She attends a dance class 2-3 times a week; she swims and does stair walking for exercise. She is doing well with her recovery."

Crazy huh? I can't believe they can use a baby's kidneys for a 49 year old woman, AMAZING.
That's our amazing Gracie! Her donation gives us a feeling of a bit more purpose in her passing. A little part of her still lives on.

Gracie's Birthday Celebration

I cut out Gracie's funeral program, mounted it onto card stock, laminated it and put it in those plastic card holders that they put in flower arrangements and anchored it into the ground.
Max and Ellie, Abbey and Brooklyn, Sadie

Ellie and I.........Taylor........my sil Tiffany, my sis Stephanie and me...........a picture of our little family

Hard plastic flowers that we put deep into the ground, Gracie's grave marker with some of her gifts, a balloon carrying Brooklyn's note to Gracie up to heaven, flowers and gifts from my friends to my Gracie Girl

Happy 1st Birthday Sweet Gracie

'You Are My Sunshine' cupcakes (thanks to my neighbor Stephanie who made them for me just like I wanted!)

So cute!

My family met us at Gracie's grave in the evening. It was perfect weather which made it the most enjoyable time we have had so far at her grave. We brought yellow, white and orange balloons to let off (and some pink 'Happy Birthday' ones that were dropped off by our friends the Roberts, thanks you guys!!). The colors were in line with our little 'You Are My Sunshine' theme. When we got there, there were already several cute little notes, flowers, gifts and balloons from our family and friends. How very nice that was.

We went to pizza afterwards and then back to my house for cupcakes and ice cream. The kids all had a great time. (There are 10 kids in all between me, my sister and sister-in-law's kids) We (or should I say I) was spoiled all day with visitors at my door bringing gifts for us because of Gracie's birthday. Seriously, my friends and family are truly some of the best people in the world. I am SO lucky to have them in my life. I got jewelry, a rose tree, balloons, some scrapbook supplies, a quilt, books for the kids, treats, willow tree figurines, and flowers. I felt like it was MY birthday!!! Those thoughts and gestures definitely made me feel some happiness on a difficult day. (I also want to say that we are overwhelmed and so appreciative of all the wonderful, wonderful, gifts, flowers and cards that we have received since her passing.......truly overwhelmed by the generosity of our wonderful friends, family and blog friends!!)

There was one more important gift that we received for Gracie's birthday. It is the beautiful song added to my playlist titled 'Gracie's Theme'. Paul Cardall wrote that song for Gracie!!!! He told us that it is expected to come out on a CD that Deseret Book is going to release later this year. When Tom and I received the song through email, we were completely humbled by such a heartfelt. special gift. We are so grateful for Paul and feel it an honor to call him our friend. (Make sure you listen to the end......Paul put the audio from one of the video's posted on Gracie's blog of Callie and Gracie......you can hear Callie talking to Gracie at the end............PRICELESS!!!)

Even though there were moments of the day that were extremely sad, we have been so blessed by an outpouring of love and support. It made me a little sad knowing that I can't take any new pictures to post to my blog. That was kind of my thing......I would take a picture of what we were doing and post it along with the words. Now, I have only her little archive to pull from. I am so glad we got so many pictures in her sweet little life. But I even kind of wish I had more!! We are so appreciative of our friends and family who are still thinking of Gracie. My biggest hope is that she will never be forgotten.

We love you Gracie and miss you more than anything!

Happy Birthday Gracie Girl

I wanted to post one of my favorite pictures of my girl on her 1st birthday. I've thought about this day from the day she passed away. Knowing that 18 days later we would be celebrating without her. The day is sunny and warm here. A lovely day for a lovely girl. Gracie, you are my sunshine. Oh how I love and miss you my sweet baby girl.

Gracie's Funeral

Together Forever

Daddy's other 'little sweetheart'


Our matching bracelets

Goodbye my love
Sisters

My precious children, together for the last time.

The table settings were amazing. So sweet and precious. The flowers were gorgeous.
The scrapbook signing pages were INCREDIBLE. The tables for the luncheon afterwards were just beautiful. The food was delicious, everything was great!!
My growing boy
Tom and I love this picture. Cute Tay Tay!

Callie with 'pinky' the bunny, taken off the floral arrangement given to us by my dad.

347 balloons for the 347 days that Gracie lived.

I know I have posted a lot of pictures but I hope they portray the feeling and story of Gracie's day. The viewing and funeral were just beautiful. Gracie looked so perfect. Just like a little doll baby. There she was, free of tubes, free of pain, free from this life. Peaceful and perfect.

The viewing and funeral were like a really bad wedding. It was really great to see all of our friends and family at the same time, but really sad to see everyone hurting so much. I told some of my friends that there had to be another way that I could get them to come and see me other than having a funeral!

The kids seemed to do surprisingly well. They were sad but I feel like the whole experience brought them some closure. They do not question where Gracie is. They know that her body is in the cemetery but her spirit is up in heaven with Heavenly Father and Jesus. My two little ones have surprised me with their knowledge as to what has happened and both have told me that they will see Gracie again when they die.

A lot of people have asked us how we are doing. That is a tricky question. I think we are doing pretty good. I feel the power of everyone's prayers carrying us through this trial, I really do. I think we will look back on this one day and know that we were literally carried through the hardest parts of this whole experience. For me, it was MUCH harder saying goodbye to her when she was alive than all of the days following her death. Those last few days were extremely difficult. Her last day in particular was a day that naturally, I will never forget. Donor Services had asked us the day before if we had any type of time frame that we were thinking of. We said that we would probably like to have her until the evening, maybe 7:00. So the next day (our last day with her), they told us that there was a plane flying out at 9:00p.m. and that we had to get her organs on that flight. To do that, we needed to be done at 6:30p.m. They had to prep her for the OR for about 45 minutes before that so that when she passed away, they would be able to take her directly into the operating room. I get anxiety even typing this. I was able to hold her (while on ECMO!) for about three hours that afternoon and Tom had her for the last hour. It was heart wrenching counting the hours down until we knew we would not see our sweet Gracie again in this life. It is something I hope I will NEVER have to do again.

The funeral was absolutely beautiful, just like Gracie. The spirit was so stong there, everybody commented about it. My sister spoke and gave a wonderful tribute of Gracie's life, her blog and her lasting imprint on everyone's lives. My friend, Michelle's sister Jennifer sang and absolutely gorgeous song (that left everyone wanting to hear it again on a CD or something!). Then Tom spoke and did a great job getting through it. Something I know I couldn't have done. Then Paul Cardall played 'I Am A Child Of God' which is something I can't really describe. To hear the song being performed live that played for Gracie over and over until she passed away is quite a sacred experience. It was the most emotional part of the funeral for me. Thanks again Paul for creating such an incredibly memorable experience for all of us. Then our Bishop made a few remarks and we left the church for the cemetery. (While Paul played more music on our way out. It was so beautiful that I didn't want to leave, I could've stayed there and listened to his music for hours!)

At the cemetery, my dad dedicated the grave. Afterwards, we let off 347 balloons in honor of the 347 days she lived!!!! Isn't that wonderful? (My neighbor, Stephanie Adair was the one who thought the whole thing up. She and many of my wonderful neighbors spent the entire night before, filling hundreds of balloons up with helium!!)

Oh yeah, and the picture of the bracelets........oh, so precious. My friend Suzy Smith gave me, Callie and Gracie matching bracelets. Mine has Gracie's bracelet design intertwined with mine. All three of them had little heart charms with the initials 'GG' engraved on them. Also, she had a little angel charm on each one too. She gave Tom, Max and Taylor, hankerchiefs with angel pin tie tacks on them. They each wore the tie tacks on their ties. So the whole idea is for Callie and I to remember that every time we wear our bracelets, Gracie is too and we can think of her. I can't believe what a thoughtful gift that was, just priceless. Thank you Suzy!!

I know that I sound like a broken record but we seriously could not have gotten through this last month without the support of our friends and family (and our blog friends!!). The outpouring of love to our family is unbelievable and very humbling. We have received the sweetest gifts, cards, notes, emails, flowers, food, donations to Gracie's tree (we have raised about $2,000!!!)..........the list goes on and on. I heard someone say that we might look back on this past year and think that it was the worst AND best year of our lives. I think I know what they mean.

Some of you have written the sweetest tributes to Gracie on your blogs. I don't even think I have read them all. I was wondering for those of you who would like to........would you copy and paste your blog posting into a word document and then email it to me? My email link is on my sidebar. I have saved all of your emails over this past year and plan to someday, print them out into a book of remembrance. I think that some of your sweet tributes would be a great addition to Gracie's book.

Thanks again, we love all of you!! Now I need to go to bed! This post has taken me about 3 hours :) :) :)

A few of you have asked about buying some of Paul's CD's. You can purchase them through his website www.paulcardall.com . I have 9 of them and they are all excellent!

A Benefit Concert For Paul Cardall

This is a picture of Paul Cardall and his darling wife Lynnette and their cutie pie Eden. He is the musician that is playing all of the instrumental music on my blog. I had his music playing for Gracie 24 hours a day for the last two weeks of her life. It was on when she passed away. That particular CD of primary songs will always be 'Gracie' to me when I hear them. I mentioned him in an earlier post, he has been waiting for heart transplant himself for over 200 days!!

When we knew that Gracie wasn't going to make it, my step-dad Gary told me that he had contacted Paul (without me knowing!) and asked if he would play at Gracie's funeral. He told me that he had said he would love to. I can't really describe the feeling I had when I heard that. It was just too nice, too much to take in. A small light in the middle of the sadness we were feeling at the time. I had not ever met Paul before the funeral. For someone to agree to play at a funeral of a person or family they never met, overwhelmed me. Paul had not played for anyone in public for over a year because of his health issues and he was going to come play for our Gracie. I was more than humbled.

He played 'I Am A Child Of God' and I was overcome with emotion. That song IS our girl. I felt like she was there with us. It was such a beautiful, perfect, addition to her service. He also played the music as we were walking out of the church with Gracie's casket. I told Tom that I didn't want to leave! I wanted to stay and listen to him play.

So, that brings me to the other reason for my post. Some of Paul's musician friends are having a benefit concert for him on MONDAY, APRIL 6TH. (By the way, we have been contacted by the director of the benefit concert and they want one of the musicians to sing a song in tribute to Gracie along with a slide show of her!!! Can you believe how thoughtful???) So don't miss it, it should be a great night!

I copied the following from the benefit website:

Kurt Bestor, Peter Breinholt, and Ryan Shupe and the Rubberband, along with other talented artists will perform a benefit concert for Cardall on Monday, April 6 at Cottonwood High School. The “Living for Eden Concert,” so named in honor of Cardall’s 3-year-old daughter, will get underway at 7:30 p.m. A silent auction will precede the concert beginning at 6:30 p.m.

“It is a rare opportunity to see these three popular artists on a single stage,” said Jeremy Barron of the Baron Group, another friend of Cardall’s who is producing the concert. “I have produced a lot of concerts, some of which have been benefits. Never has a concert hit so closely to home as this benefit concert. Paul has helped a lot of people through his music, benefit events and work with other musicians. I think I can speak for all of us involved when I say that we are honored and excited to help one of our own."

Cardall, who was born 35 years ago with a severe congenital heart defect, has been on the waiting list for a heart transplant since last August. He has been limited in his ability to support his family and to meet escalating medical expenses during his prolonged illness. Seeing their friend’s condition, Cardall’s colleagues decided to do what they do best – make music and use their talents to benefit Paul, his wife Lynnette and their daughter Eden.

“Each of us wanted to do something to benefit Paul,” said Peter Breinholt. “Coming together as we are is our way of paying tribute to, as well as helping, one of our own. A hundred percent of the proceeds will go to help Paul with his mounting expenses.”

"I’ve known Paul for many years,” said Ryan Shupe, “and we are honored and excited to help him in his time of need, not to mention we get to share the stage with some other incredible musicians. It’s going to be a great night!"

Tickets for the concert are available online at http://www.livingforeden.com/ beginning Wednesday, March 11th and they can also be purchased at the door the day of the concert. The cost will be $12.00 per person, while those buying groups of five or more tickets can get them at $10.00 each.

A Loss For Words

How do you post a follow up to the passing of your sweet baby from this life? I am at a loss for words. Up until now, I always had Gracie to talk about and update on.

Now she's gone. Life will now go on without her.

We have had an incredible outpouring of love and support. It has been completely overwhelming. I still have not had time to read the comments from our last few posts. I think I have about 1000 to read!! Life has been so busy planning Gracie's funeral and visiting with friends and family that I've hardly had a minute to really mourn Gracie. Now that the funeral is over, everybody goes home and goes back to their everyday life. It is odd in a way. You expect the world to be frozen while you grieve for your child. But it doesn't work out that way. Life goes on and a new normal begins.

Every day for the past 11 months and 10 days have been filled with incredible purpose taking care of my sweet Gracie. It is going to be huge adjustment this week as my kids go back to school and I resume the life I had almost two years ago before this all began.

I am waiting to get all of the pictures back before I post about Gracie's funeral. We had the same photographer that took our professional pictures come and take pictures at the funeral. It was an incredible couple of days.

I thought I would post a picture of me holding Gracie the night we got the call for Gracie's heart transplant. It is the last picture I have holding my 'healthy' baby. I held her briefly early in the morning of the transplant but I did not get a picture. And the pictures I have holding her that last day on ECMO are ones I don't really want to remember. Little did I know in this picture that I would hold her for the last time 9 days later. It still seems so surreal.

The song on my playlist titled "I Am A Child Of God" has a special verse that was written for us moms who have lost a child. I thought I would post those lyrics: (thanks Heidi!)

I am a child of God and He has called me home.
My earthly journey's through but still, I do not walk alone.
He leads me, guides me, walks beside me, helps me find the way.
He welcomed me with open arms. I live with Him today.


I am a child of God and I have gone ahead.
My earthly life was brief but oh, such peace and love you gave.
You loved me, held me, stood beside me and though I cannot stay.
You gave me much to help me and I live with Him today.


I am a child of God and I will wait for you.
Celestial glory shall be ours, if you can but endure.
I'll lead you, guide you, walk beside you.
Help you find the way.
I'll welcome you with open arms
One bright Celestial day.


--Donna Kulliard

Gracie's Obituary

Gracie Jean Gledhill

"Our Little Sweetheart"

Gracie Jean Gledhill, age 11 months, passed away Monday, March 2, 2009 due to complications from a congenital heart defect.

Gracie was born March 20, 2008 to Tom and Michele Gledhill in Salt Lake City, Utah. Words cannot express the love we have for our Gracie Girl. She captured the hearts of everyone who knew her. Her eyes looked into your soul. We cherished her smile, her sweet spirit and were in awe of her continual fight for life.

Gracie was our sunshine. Her light and amazing story was contagious. She deeply touched hundreds of people worldwide through her blog. She endured more trials, pain and affected more people than most of us will do in a lifetime. We are better people because of her and look forward to being a forever family.

She is survived by her parents, her loving brothers Max and Taylor and her sweet sister Callie. Grandparents; Grant (Arlene) Snow, Connie (Gary) Mayer, Katherine (Theron) Wiser, and Rhett Gledhill, along with many aunts, uncles and cousins.

We want to thank all of the amazing doctors and nurses from Primary Children’s Medical Center who not only cared for Gracie, but loved her too. We will be forever grateful for their service.

Funeral services will be Saturday, March 7, 2009 , 12:00 noon at the Highland South Stake Center, 9600 North 6800 West in Highland, Utah. There will be a viewing Friday evening from 6:00-8:00 p.m. at the same location and from 11:00-11:45 a.m. prior to services. Services provided by Warenski Funeral Home. Interment: Highland City Cemetery.

Goodbye sweet girl……until we meet again. We love you!!

(Gracie's obituary will be in the Deseret News and the Salt Lake Tribune tomorrow (Thursday).)

Goodnight Gracie

This is Tom posting.

At the PICU, they don’t let parents sleep in the rooms overnight. I developed the habit each night of saying 'Goodnight Gracie' to her, and when I went to the sleep room, I again always said to myself, 'Goodnight Gracie' just before falling asleep. When we brought her home last June I slept all night on the floor of her room on a blanket, with her in my arms. What I wouldn’t give to hold her in my arms all night tonight & every night. We then figured out our system of having her sleep in a porta-crib next to our bed. I’ve always said out loud 'Goodnight Gracie' every time I went to bed. I think I’ll always say it.

Saying goodbye tonight was excruciating. The love and peace in the room transcended to a physical, tangible feeling. Having all my kids together this morning for a few precious moments truly was a piece of heaven.

Gracie will always be an amazing gift to our family! Giving her a blessing was a sacred honor I’ll always cherish. Having her touch my life so completely, I’ll forever be changed.

I know this, Heaven just got better, and I’ll be doing my part to be wherever Gracie, my brother and sister, and my grandparents are. I’m sure they are rejoicing together.

We’re so very grateful for the outpouring of love and support for our family, and especially our sweet baby Gracie!

It’s with a very heavy heart that I whisper 'Good night sweet Gracie. Your Daddy loves you.'

Full Circle

Some of you may wonder why I blog so much during this ordeal. Quite frankly, I eat, breathe and sleep Gracie and this blog helps me feel connected to her when I am home at night or even when I am by her side in the hospital. This is my journal of every detail of her life to remember always. I was a journal writer when I was young and into my young adulthood. I think it helps me deal with challenging times in my life.

Dr. K was here this morning and decided to go in again and wash out Gracie's chest because of the bleeding. He also turned down the flow on the ECMO machine to see if her little heart would take over and do some of the work.

It didn't.

Her little heart is just not going to recover. We are out of second chances. They have done all they can do. Her body is wearing out.

If it were up to me, I would keep Gracie on ECMO for a month just to see her sweet face, touch her delicate hand or rub her cute little toes. But we have to let our sweet girl go, for her sake. Luckily, it is not a decision we had to make. She made it for us. She is not in pain but her body is suffering.

She is still having a tremendous amount of bleeding. Her body has had enough. Our hearts are aching.

We came home tonight and had a little family council. What a difficult thing to tell your children that this time, for sure, Gracie is not coming home. To see the tears on my children's cheeks is almost too much to bear. I knew a long time ago that if Gracie passed away that it would be difficult for Tom and I, but I DREADED dealing with three grieving children. Two mornings ago Max asked me first thing when he woke up, "Mom, how long does MOURNING last?" I told him that it can last a long, long, time. After our meeting tonight Max made Gracie a sign that said "We Love You Gracie" with a big red heart to take with us to the hospital tomorrow. I think she will like it.

So tomorrow is a very dreaded day. The day most parents hope they will never have. The one where they say goodbye to their little one for this lifetime. In the morning, we are going to take the kids up to say goodbye then they will be taken home while Tom and I stay up there for however long we feel we need to.

We have come full circle. The reason I say that is because one week ago we got the call that we thought would change our lives for the better, forever.

It wasn't to be.

Now, we have the chance to donate some of Gracie's organs. Wow, what an experience.
Because of this, we won't get to be with her after her passing like we would want to. Our donor family didn't get to do that either. I envisioned being able to hold her for as long as I wanted to after her passing but you can't do that when you are an organ donor. They will let us be there when she passes but will have to take her immediately to the operating room. I feel like it's the least we can do. We are so grateful for the family that gave our daughter a new chance at life. We hope that Gracie can do that for someone else too.

Thank you for the tremendous outpouring of love and support to our family. We feel the peace that your prayers are bringing into our lives.

WE LOVE YOU GRACIE GIRL!! You have changed our lives for the better and we will strive to live our lives in a way that we can see you again in heaven. You have been a pure blessing, an absolute treasured gift.