Tuesday, February 16, 2010


We had my friend Ally, http://www.allybrynndesigns.blogspot.com/ create the above picture for both of Ashley's parents from the little we knew about her from the original Tribune article. She was passionate about animals- so are we. With her MuM's permission, here are some of the many pictures from this bitter, bitter, bittersweet day and my account as best as I can share it.
James & I felt driven, compelled, eager to go to our Ashley's funeral. We knew she was LuLu's Angel. We went early, before anyone had arrived and planned to be voyeurs as this isn't the right venue for meeting a donors family. We felt privileged to be able to pay our respects to the beautiful girl who gave LuLu life and to hang on every word spoken about her short but full 12 years on Earth. We spent the most sacred 30 minutes of our lives alone with Ashley before the viewing was to begin. Never could anything be as humbling as standing before a lifeless body that breathed life into your own. LuLu was a NEW girl almost instantly (within days) of receiving her new, pink, clean, beautiful liver.
Grief meets Gratitude. I wanted so badly to change this, I wanted for her to be alive, awake, well. I wanted so badly to give her back to her Mum and Daddy. We would have continued on our unyielding path of living donation. But all our wishes don't come true, this one-so unfortunately never will. As we were about to leave the room we were greeted by the Bishop. He must have had his eye on us from the hall. He knew there was a connection to Ashley that we wouldn't easily give up. He first asked if we were family. "No," I said behind my tears. He asked if we were friends of her family. I couldn't lie to a Bishop so I again said "No, we are just here to pay our respects." He then asked where we were from, not recognizing us from Vernal, a small, rural Utah town. We said Salt Lake, Murray actually. He then said he use to live in Murray too. Right then I could see my old friend Rusty in his face and had a vague memory of his parents moving to Vernal after his high school graduation. My world gets smaller everyday. He then asked for a third time why we drove all this way to Ashley's funeral if we didn't know her.
James and I made eye contact, reading each others minds..."what do we do? what do we say?" I felt like I'd been caught red handed. I wanted to run into the chapel where we planned to sit quietly on the back row. But instead I softly whispered (though no one else was in the room) that we think our baby was a recipient of Ashley's liver. He started crying- a tender man he is, hugging both James and I. Thanking us for being there. It felt so unnatural to be thanked for anything, when we were the ones who took so our daughter could live. He excitedly asked if we had met her mother yet. "No...no...no. Not here. Not today." I started feeling panicked. He said we had to meet her, she would want to meet us.
Before I could say no again and tuck out of the viewing room undetected, I was being introduced to Ashley's aunt and uncle who too started crying when Bishop Bentley told them who we were. They hugged us and again thanked us for being there, for coming to Ashleys funeral. Not a minute later Ashley's Mum walked in, we were introduced and before I could passout, hyperventilate or throw-up...I was in her arms, being held up by her. Crying together now holding eachother up. She congratulated me, couldn't wait another second to know how MY baby was doing. My head was spinning, was this real life? We couldn't let go of each other, our conversation taking place softly in each others ear while we were hugging, still crying. We started to be surrounded by many people as we stood embracing a foot away from Ashley's beautiful body. Before long James and I had been introduced to the entire, BIG, wonderful family. This was unreal. I couldn't believe this was happening. It was like a dream. A strange dream you could never imagine IS actually your reality. Thought I had to wake up...any second now, but I didn't and this day was as idyllic as any child's funeral could be. Happy, upbeat, a celebration of her life. Rejoicing much in the gifts of life she gave to so many, our Lucky LULU being just one of them.
We could feel the same spirit in this room, this day as I did the preceding days in the hospital. Ashley walked the long walk by my side to take LuLu to the OR. She stayed with LuLu to watch over her while she was given a second chance at life. She dwelt with us in the waiting room, the mood made lighter because of her. She was there when we gave London hip-hip-hoorays after being told what a success the surgery was, how strong she had been. She cheered with us, I'm just sure of it. She was with LuLy when we were able to finally greet her 12 hours after surgery began. London was NEVER alone, I know it. Ashley continues to be everywhere. I see her in London's eyes.

....or dogs. Ashley loved horses, was passionate about horses. She dreamed of having her own one day. Now I'm sure she has many. Hopefully more than she knows what to do with.

I said everything I needed and wanted to say to our Ashley. I am so lucky to have been afforded this rare opportunity. I placed a beautiful hand made paper flower in her casket. My sweet cousin Emmy gave me 2, just minutes after I left LuLu in the OR for her transplant. She was ray of sunshine in a dark moment for me. LuLu has the other flower, in safe keeping. Never in my wildest dreams would I have thought how symbolic and special those two flowers made by a 12-year-old toe head would be.

James always knows what to do. Even though I've never needed or wanted privacy from him, he stood back for a bit as I stroked Ashley's long, thick hair. Thinking to myself this is what London's hair will be like one day. As I gently ran my finger from her forehead to the tip of her nose repeatedly, I thought about all the times I'll be able to touch LuLu's precious nose. I touched her cheeks, kissed them. Held her hand, lovingly squeezed her arm, alarmed by the coldness of her body. I wanted to warm her, that's the Mum in me. Actually I wanted to hold her in my arms, sing her our song and tell her that "Every little thing is going to be alright." But it's not because our world isn't quite as good as it was when this girl was in it. I touched her tummy many times where her liver would have been had in not been gifted to LuLu by her parents. They both knew it was what she would have wanted.

Double click on the above letter to really get a sense of who Ashley Maynard was or shall I say is, because she does live on in spirit and physiologically in LuLu and four others. So full of kindness, this girl. So much compassion in her 12-year-young body, it gives me chills just thinking about her and the first of many times I read this precious letter from a classmate. I feel proud London has a little (but vital) piece of Ashley in her.

Two proud Dads. Ashley was William's only child and his world to say the least. A sad day for both Papas but we won't even begin to think we have any idea of the grief mourning parents feel forever.

The first thing Will asked me in his awesome NYC accent was "how old is your baby?" I replied 1. He countered with "is she 14 months?" I accepted after thinking of what day and month and year we were in. "Yes, she is 14 months." Thought it odd...until he said that he was told Ashley's left lobe of her liver went to a 14 month old female in Utah. Little did we know that we were under the same roof for so many agonizing hours. His next question was "How is she doing? How is Ashley's liver working?" I told him beautifully.

Might be ONE of my favorite pictures of her. Reminds me of my childhood on all the neighbors tramps. Isn't she the most beautiful girl you have ever seen?

Ashley's maternal Grandpa, who lost his wife a few months ago and the dear mother of my LuLu's liver, Camille. If you enlarge the picture you can see the necklace I was able to give her. An "A" pendant with a heart charm. We both have one for Ashley and wear them everyday. I added it to my "L" and "J" that I've worn around my neck for exactly a year. I've never met such an incredible woman. I can see where Ashley gets it.

Ironically my Mum's two brothers owned a horse named COOKIE together for 20 some odd years until she passed away just a few years ago. I picture our family horse greeting Ashley into heaven standing next to God, Jesus Christ and our Heavenly Mum, just itching for her to get on for a ride. That is Heaven, whatever we need it to be.

Ashley's beautiful sisters and MuM. (on the left, her step-dad Len)

LuLu sent her love and was there in my heart.

Our gifts were intended to be left behind with a letter but after meeting like we did- were able to give them personally.

Daddy, Auntie and Uncle. The same 3 who were pictured on her Tribune article about the families wishes to share Ashley's life with others.

I kept thinking of the confusion for Ashley's sisters, especially Abigail and Sammy (younger) I had my eyes on her through the whole graveside service.


James with his hospital wrist band on-the same color her parents wore for 8 days while at PCMC. Saying goodbye to Ashley, til we meet again.

I was lucky enough to have been gifted this button. Ashley's oldest cousin took it off his shirt and so lovingly gave it to me.
And this is what was waiting for us back in Salt Lake. Wow, we are rich beyond measure. I could write a book about this single day in my life and then a really BIG one about the last year of our life. Many details so dear to my heart, the feelings indescribable. I hung onto every word spoken that day, took notes as I sat on the front pew, upon her MuM's insistance-never wanting to forget any detail spoken about our Ashley. I felt of God's goodness this day, of his love for Ashley and her family. For me and mine. It's taken me a whole year to really understand what's gone on and why, to feel complete peace again and to see the many blessings this trial has brought into our lives. I wont' even call it a trial any more because the hardest is behind us but not to be forgotten. It's just a beautiful, amazing, bright road ahead of us. Thank you Ashley from the bottom of my heart and from the bottom of LuLu's liver.

All my love to you, little sweet LuLu with a half Italian liver. Brave, strong, warrior baby of MINE. Thank you for making me brav-er, strong-er and a titch-bit more warrior-like. Every minute with you and Jonah is such a blessing to me and your Da-Da.

Lizzie. Alpha-1, Liver Mum


Karen said...

Crying tears of sadness and joy for both ur families this morning.

Lisa Cannon said...

Thank you for sharing that touching experience. I cannot even begin to imagine.

It is a small world... I am friends with Rusty's wife Erica. I'm sure it is the same guy.

Amanda said...

Liz. Not many words for this post... beautiful. Thanks for sharing :)
Amanda Skowronek

Carrie Page said...

Liz, thanks for sharing so much with us. It's amazing how many lives have been touched by sweet Ashley. I of course am just a blog lurker, but have never cried more tears for someone I don't know. What a beautiful gift! God bless both of these angel girls!

allieb said...

No words...just tears...

Rachel said...

that was beautiful liz.i cry every time i read your blog, i have no idea how you held yourself together.thank you so much for sharing, you're a family of warriors!

Megan N said...

Thank you for sharing, Lizzie. Too many tears and emotions... Love you lots.

Annie said...

Even more beautiful than I would have imagined. Thanks for letting us share with you. Love you.

Jeannie, Jane, Angel, Mommy, etc.. said...

Wow. Totally crying here, but they are good tears. I am SO glad that your little lulu is doing so well. How amazing is it that you were able to meet her family and they were so accepting of you? MY daughter, Ember, had BA and received her life saving gift in November 2008. We are still waiting to hear from her donor family. We hope that someday we will, but know that it might not ever happen. Congrats on the new liver!

TPoirot said...

What a beautiful experience has evolved from this tragedy...LOVE is the real peacemaker and faith in knowing Ashley is in heaven~ what amazing family's envolved on both ends and true compassion all around! Both sad & sweet memories represent this post.You & Ashley's MUM embracing was heartfelt & seeing LuLu recharged smile warmed my heart- XOXO

Oka said...

A friend of Camie's sent me your link this afternoon.

Your account of that day was beautiful. I do believe you could write a book about it, and a series about your year. Maybe one day you will...your words could help many who are going to experience similar circumstances. Your words could help families who have chose to donate organs.

It makes me happy to be an organ donor when you get to hear beautiful stories, with promising outcomes.

Cydnee said...

Thanks, Lizzie Bug!

Jo Lynn said...

Oh Lizzie, I'm bawling right now...tears can't stop flowing! What an incredible thing for you and your husband to be loved and accepted into their family! Beautiful pictures and what an incredible thing to share with baby Lulu about the warrior who saved her life and who continues to live on each and every day inside her! Oh I can't wait to meet baby Lulu!!!! Thank you for being so open on your blog about your emotions and the experiences you've gone through! What a strong little girl you have!!! Much love coming your way!

Walkers said...

Liz, I have sat here reading this blog for hours, starting at the beginning, with tears running down my face. You LuLu is such a strong fighter! I am amazed at the blessings she has received and has a lifetime more to come. I will be praying for your sweet LuLu and your entire family.

All my love,
Lyndee (Rigby) Walker

Anonymous said...

I'm related to ASHLEY by marriage. Ashley and my daughter are 10 months apart. Madison was blessed with the most amazing wardrobe a newborn could have. It was legendary...=) So you could say Ashley's been a giver all her life. She gets it from her Momma. Whenever I think of Ashley, I immediately remember a Christmas with the whole family...you met them...when my daughter was about 4 or 5. All the little girls had on ankle length dresses, gowns almost, except Madison (I apparently didn't get the memo, Maddies dress was only knee length) and as some kids do, all being under the age of 10 or so decided to exclude my daughter from the Princess game. Princesses wear long dresses, Maddies didnt cut it. It didnt help that she was also the only blonde...this was before (Sammie and Abigail). Maddie cried to leave the party because she didnt fit in...but, and I'll never forget...Ashley only 5 or 6 at the time...abandoning being a Princess, hugged Maddie, took the elastic out of her hair and tied up her beautiful silky dress, in a big knot, so it sat about knee length. She turned to the other girls, and in a sweet voice, said "if Maddie doesn't play, then I don't play". A real princess can wear whatever she wants". That's what makes her a princess".

I was so impressed with how unselfish a child could be. But thats Ashley. I never saw her any other way. Its funny, sometimes when a person passes, you idealize them, forgetting any wrongs they may have done, only remembering the good. But with Ashley...there was only Good. There IS only GOOD.

Beautiful Blog. Thank You.

Alison said...

This is so touching! I was overwhelmed with tears. I look at the example of you and so many families that I meet at the hospital, your strength is infectious, your example contagious, your love and zest for life... beautiful!!! Thank you for sharing something so personal and powerful. So thrilled that little LULU is doing well. XOXO Ali

April said...

Lizzy, i would love to see you write your last year in a book. i was thinking that today. you have changed in a way that most of us can't reach, you have learned what life is really about. giving all you have and trusting in the lord - sacrifice and faith. Thank you for sharing with us all.

Anonymous said...

Every time I read this, I pray and strive to become a better person because I realize that there are really are good wonderful people in the world. Your family and the donor and her family have proved that. Even through YOUR pain you've all shown compassion, grattitude, love, and numerous other qualities to OTHER people who are suffering. Thank you for showing me that.
Much Love. -A-

The Davidson's said...

you know how to say things that touch a persons soul. You live quite the life Liz. Blessed in so many ways. Hardships, as you have shown, can be a blessing in disguise. Life, good and bad, should never be taken for granted because it is being given to us in one way or another. Grab it with both hands, kiss it, learn from it, grow from it and in the end be better because of it. All things have their purpose.

Erica said...

All I have to say is WOW. Thank you for sharing.

Marcae said...

Simply Beautiful!!!

derek, allie, emma , & bradyn said...

I came to your blog through my dear friend Kendra's blog a little over a month ago now.
Your story touches my heart in ways I never thought it could. These past couple of months have opened my eyes to so much more out there in life. Through Kenzie's eyes, through LuLu's eyes, and esp their amazing mothers eyes and love.
I have 2 beautiful perfectly healthy children and I am realizing how special that is. And not to take anything for granted and kiss them an extra time before bed. Because of stories like yours.
Thank you for sharing your story and not minding me following. I talk with Kendra about you often.

Thinking anout you and LuLu, Allie

Kim said...

I saw your blog listed on my friend's, Liz Swalberg's, blog. You've been thrust into a world that you didn't want to be in but your story is truly amazing. I am from Utah but now live in Georgia and I read about Ashley in the newspaper and what a small world it is for her to be the donor. You are now called to be a guide and a resource for other Live Mums out there. Although I've never been in your shoes, I too was thrust into a world I wasn't prepared for. I have a 10 year old son w/special needs and it's amazing to see how one person can help others. I think it's time for the Utah Chapter of Liver Mums...you are the beginning and will help so many others who are on this journey. From a Therapy Mom to a Liver Mum, best of luck to your little family.

June said...

Liz, thank you for sharing this post with us. It was a gift to us reading this.

Kristin Kimble Purles said...

My name is Kristin, Clark Kimble's sister (Super Clark). I have known about Lulu and read your blog a few times in the past but have been so busy with our own trials that I haven't checked in again until today. I read this post crying all the way! Being a mother myself, I cry sympathizing with you, and I bawl sympathizing with Ashley's mom. We too have said just as many prayers for Clark as we have for his donor family. We have not been in contact with them yet but I hope that someday we can also show our unmeasured gratitude for them. What an amazing day for both yours and Ashley's families. May God bless you both, and of course Lulu!


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