Friday, February 19, 2010

Happy 1st Alpha-versary

365 days ago I felt defeated, hopeless, unsure of my baby LuLu's future.

Tonight I am elated, grateful and overcome with happiness.

Thank-you Alpha-1 Antitrypsin Deficiency. You didn't kill us, so you must have made us stronger.


Alpha 1, Liver MuM

Thursday, February 18, 2010

Victory is HIS

Another beautiful creation, by my dear Ally. ps she can create anything your little heart desires and will ship. This is Abdul and his FAMILY including the two American soldiers who have saved his family in more ways than one.

This is Abdul. We met him while Lu was in the PICU post transplant. His little girl Saja, in the PICU as well. After a long hard fight she passed away while in the hospital. We grew to love Abdul and his family who we haven't met but know through him, phone calls and SKYPE. He returned from Idaho (new home away from home, Iraq) for brain surgery.

This is him kissing James' phone as a video of LuLu plays. Before I could ask him how he is doing, his first question in broken English is "LULU, LULU, Baby, how is Baby?" When I respond with "perfect" He touches his heart, kisses his fingers and thanks God. "Thank you God, Thank you God." Love this man.

His brain surgery yesterday was a success. His kids now aren't worried about "if" their daddy is coming back home as they had to worry about Saja. Look at this mans eyes, HE is as good as they come. I feel ever so privileged that we are his friends. He is such a hero for so many reasons.

The AMAZING Doctors who performed this life-saving operation removed a non-cancerous tumor the size of a large fist that had eaten 2.6cm through nervous tissue as well as bone. It eventually would have spread to his ear canal, burst and caused instantaneous death. Thank God for Russell Hayes and everyone that had a part in getting this family out of harms way in Iraq and seeking the medical attention that half of the family so desperately needed. (3 of his 6 children have a rare form of dwarfism and his oldest, Sweet Saja was born with)

Brothers. This is Russell an Officer in the US Military who has a child with dwarfism as well. He and his wife have sponsored Abdul's family, spending their life savings doing so. They really are a blended family, living next door to each other in Idaho. Family isn't just about genetics.

Blowing me a kiss. If he didn't have a bandage on his head and IVs in his arms- you'd never in a million years think he'd undergone brain surgery less than 24 hours ago. He's perfect.

This is a blanket I made for Abdul in all my spare time. Laughing out Loud- I don't have any of that. I made it for him 12 years ago I just didn't know it at the time. I bet God did though. I intended on giving it to the LOVE of my life (at the time, a sophomore @ MHS my dear, sweet boyfriend Ty Williamson moved away to college and I was devestated) But when I was finally done with the quilt, I just couldn't give it to him. (sorry Ty, "KUPPER") Now, I know why. I've held onto it all these years in a box that would follow me from home to home...always wondering what I would do with it. Let's be honest-- it's probably the one and only quilt I'll ever make so I needed to be sure it found the right home. And it did, over a decade later.

Cheers to Abdul and his Family.



Alpha-1, liver mum

Tuesday, February 16, 2010


We had my friend Ally, 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. " 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

MiLo MaN's BeNeFiT

James donated several gift certificates like the one above for Milo's silent auction. He teased me asking why I didn't have him pose rather than stealing an image online...time restrictions were my only reasoning...he looks great with his shirt off! Glad I didn't run into anything dirty when I Google searched "hot construction workers"

I met and grew to love MILO while we were hospitalized at PCMC and he was receiving almost daily chemo at Hunstman Cancer Institute which is connected to PCMC. We were introduced my my sister-in-law-Stacey who has been a long time friend of Milos.

Jonah happily donated his piggy bank money to Milo. He knows it will help him buy medicine to make him better, just like LuLu needs lots of medicine. I hope and pray to raise compassionate children. That is my number ONE priority in this life, more important than anything else James and myself could accomplish. I think Jonah is off to a great start. He's been a wonderful, caring brother to LULU and also donated his piggy bank back at Christmas too for a family in need.

Having a little fun with the stache and DO which is what Milo use to look like before he lost his hair due to chemo treatment.

Milo's benefit/birthday bash was a hit minus the birthday boy not being present, sicker than a dog. Worse day of chemo side effects to date. He was greatly missed but he was felt in spirit as we all wore MILO buttons with a cute little mustache on it. Apparently that and a big curly fro were Milo trademarks pre-cancer. So I thought it appropriate to get a wig and stache in memory and to serve as a reminder of what will grow back after his nasty fight with testicular cancer is won. Somehow I ended up being the luckiest girl ever and got to hand deliver the money raised, a wonderful birthday cake made by my dear friend Leslie ( a few other items. Love this man, so lucky we became insta-friends.

HIS Buddies

My BUDDIES, representing...missing Leslie, Ally C., Lacey & Melissa- who were all there to support in many ways. Thank you and to Ramsi, Jayma & Allicen W. who sent wonderful contributions to the silent auction. I also met one of my Bloggin buddies Kendra (see side bar Angel Kenz) who showed up to support Milo and meet me. Love this girl. We (Hallie joined) had dinner together a few days later and talked for HOURS...but it still wasn't enough time. SHE is one heck of a lady. Love, Love, Lover her. Have I said that I love her?

This is my dear friend Allie's little girl KAIA. She's a doll. So sweet and lovely. Notice her Milo pin. It was fun to have little ones running around. I know Milo would have loved the night.

One of my "wins" from the silent auction with my friend Natalie who scored an airbrush tan.


Mayor Snarr (golf foursome)
Miche Bags

Badger Construction :) (gift certificates)

City Sun Tanning

Shade Clothing (Ashley England)

Jenna Hansen (reformer pilates sessions) 801-664-9625
Schmidts Pastry Cottage (donated 200 cupcakes!!)

Josie Dellinger (hair, Taylorsville 801-631-8553)

Lisa Snarr (hair, Murray 801-455-3247)

Tabitha Rex (hair, Lehi 801232-6402) I can vouch for all 3 of these girls being GREAT!

Stephanie Wood (Avon Rep. & photographer) 801-598-5044

Preston & Nikki Price, Massage Envy (801-253-5330, 801495-4280)

My Mum Bonnie, no web site--she's just great!! Thanks MuM, you're the best.

Friday, February 12, 2010

Ashley's Gift: A Liver For LuLu (Posted by Aunt Julia)

LuLu was front page news on Valentines. We are very proud of her and her hard work to overcome a year of illness. Love that our stories came together. We are forever in debt to Ashley and her family. xoxo Lizzie, Alpha-1, Liver MuM. 2-14-10

What a fun surprise to see LuLu's Salt Lake Tribune article online today! We were told it would make it's debut on Sunday morning, but to generate interest for the Sunday paper, they released the online version today. Lizzie asked that I post the article link on LuLu's blog. She doesn't want to see it until Sunday morning. Seeing the hard copy in ink will make Valentines Day complete for Lizzie and James.

For those of you (like ME!!) who just can't wait...

I'm sure you'll agree that Heather May wrote a fantastic article. Big props to her and the photographer, Steve Griffin. Our families and friends really enjoyed the time we spent with them as they pieced the article together over the last few months.

I am so thrilled that this article is about Angel Ashley and LuLu together. They are liver sisters, and I think their moms would agree, soul sisters, too.




Thursday, February 11, 2010

Our Story

(I'll give the back story on my next post...MILO'S benefit)

This Valentines Day will be the best I've ever had. My love continues to grow for my sweet James and our little ones. It will also be exactly one month post-"call" for transplant and Luluy girl is doing SO well. We will also be able to pick up the Tribune and read LuLu's Story!! Well, it's not just LuLu's story anymore. It is now LuLu & Ashley's story. It is such a rare, rare thing for us to have found eachother and to have shared in this incredible journey of organ donation together. Full circle.

Burden after burden have been lifted from James and I. We are grateful for the trials we've had the last few years but are ever so thankful for relief. We ARE changed, better people because of our trials. I hated being in the middle of them-hated, hated, hated but am glad I was able to experience, learn and grow from them. My dad has always said "learn the lessons Liz" and I believe I have.

Whatever YOU are going through, big or small. Learn from it. Don't let it be in vain. How awful it would be for me to look back on LuLu's illness and other goings-on and have let it get the best of me, well I should say US cause James has been refined as well.

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