Liz- I can't believe we are nearing our second Christmas without you!! You were my angel here on earth. You made me so strong and now you are gone...I love you so much and know you are running in heaven the way you never could here. I miss you my Angel Mom
Miss Lizzie Lulu / Jackie Bergendahl (Friend)Read >>
Miss Lizzie Lulu / Jackie Bergendahl (Friend)
You truly are an amazing young lady. Thank you for filling my heart with joy, laughter, and smiles. I hope and aspire to be as strong you. Thank you for never giving up and showing me what it means to be a true hero. Thank you for letting me be a part of your amazing journey. I am forever changed and will never forget you! I love you Liz.
The Pinkest Soldier of All! / Linda Hertsgaard (Friend)Read >>
The Pinkest Soldier of All! / Linda Hertsgaard (Friend)
Oh, how fortunate I am to have known and experienced Little Lizzie Lulu. To see and hear her laugh is to know her. My children, Jenna and Quinn, and myself would look so forward to having Lizzie visit us. It was so special from the beginning because she was SO special. When I first met her, I can only describe that she left an impression on me that humbled me. She was sensitive, fun loving and brave.
I vividly remember visiting her in the hospital when she was four years old and all of 24 lbs. She struggled for every breath, sheathed with only a damp washcloth covering her fragile little body. Helplessly, I laid my hands on her to pass on any good energy I could, silently wishing her body to good health. She had so much work to do on this earth and so many more people to reach. When I left and got in my car, I bawled. She touched me so and she changed me.
Miraculously, she pulled through. She continued to spread her specialness throughout our world. She is still here, up, down and all around. Hiding behind chairs, in closets, any small nook or cranny and giggling. Just like how she loved to play hide and seek.
I miss you little Lizzie Lulu but I know you are still here. Cleverly playing hide and seek with us all, continuing to touch us with your specialness in so many ways. Thank you for your inspiration.
You will always be with me, an everlasting impression. You will never be forgotten, my sweet angel. I think of you as the tiniest, bravest and pinkest soldier I have ever had the pleasure to know and to love.
Thinking of Liz / Stacey Epstein (friend)
At 4 years old, Liz was one of my first patients after I finished medical school and started residency. She amazed me. Such a tiny body (20 maybe 24 lbs at most), so frail and sick (at the time), but so alert and inquisitive. She wanted to know what exactly we were doing, and why. I was stunned by her voracious mind and enormous life force. Little did I know that that was just the beginning. Throughout her life she has continued to amaze me. I reflect at all that she has accomplished in her short life and feel ashamed that I am not able to do more to help other people. She had more insight and generosity than anyone I know. Her spirit lingers in all of us and will have an affect on this world greater than most who live 4 times as long. One can only wonder what she would have done with another 13 years.
I miss you Liz. Thank you for helping me be a better doctor and person. Oh and thank you for the cool purse. I get a lot of compliments on it.
Lizzie, you are and will always be a GREAT INSPIRATION to me, and to so many others, and in that way, you live FOREVER...
I think of you when I'm down, and your spirit lifts me up; I think of you when I want to quit, and I keep going; I think of you when I'm bitter, and become grateful...
Your smile and self-confidence and amazing attitude are always with me! I love you.
For You Lizzie / Grammy
i carry your heart with me e.e. cummings
i carry your heart with me (i carry it in my heart) i am never without it (anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet) i want no world (for beautiful you are my world, my true) and it’s you are whatever a moon has always meant and whatever a sun will always sing is you
here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide) and this is the wonder that’s keeping the stars apart
My dear friend / Christian Darren (Friend)
I made Lizzie laugh, and she made me laugh. Often -- out LOUD! We loved each other's company, and felt a special bond the moment we met. I knew she was special; and she knew I knew.
There are certain people who make a difference in this world, and Lizzie was one of them. She was a ray of light.
I miss her and think of her every day.
And sometimes, I hear her laughter in my mind, feel her presence in my soul...
My heart and my prayers go out to her loved ones... Close
With love from Grammy / Susan Moses (Grammy)Read >>
With love from Grammy / Susan Moses (Grammy)
Her eyes were Zave, (She invented the color when she was 5) her heart was brave, she was my granddaughter. She lived life hard with incredible regard, for every soul she encountered. For her there were no gray days, she simply saw them pink.
I was there to enjoy her first breathe at her birth. Diagnosed with Cystic Fibrosis at 8 months, could have been her obstacle, but during her 13 physical years on earth, she seemed to milestone 10 years with each birthday. By the time she was 4 she was sitting in her Dedo’s (that’s Bulgarian for grandfather) lap learning anatomy from his surgery book, and pharmacology, phlebotomy and genetics from his vast medical library. She wanted to be armed with information to grab control of her medical condition rather than becoming a passive recipient of procedures. Simple story books and basic readers did not hold her attention. No, Lizzie craved a higher level of knowledge; she digested life and passed on wisdom that at times often dumbfounded the adults around her. Imagine a 5 year old discussing her frontal lobe, patella and pancreas so casually and confidently. Honestly, it was mind-blowing.
Any nurse charged with her care can attest to her keen understanding of each medication, the dosages, the dilution and the run rate. Lizzie was not passive with her demands for precision. But she was the most forgiving and encouraging patient and she often told me that she felt horrible when the medical staff had to perform some painful procedure because the knew that it would hurt them to be hurting her.
Lizzie loved being home schooled and stood her ground whenever anyone would challenge the wisdom of her choice. She and her mom did not simply read the history books; they followed on with comprehensive roads trips to historical sites and monuments. She wanted to see them, feel them and personally experience being there.
Traveling was one of her most treasured experiences. IV’s, O2, tube feedings and needle changes were not a deterrent. No, Liz did not see obstacles. She stimulated her family to devise creative solutions because she knew that the inconveniences would be far outweighed by the lasting memories. Wearing O2 at the altitudes of the Rocky Mountains was no big deal for her when she participated as a junior bride in her Aunt Jill and Uncle Paul’s wedding or when she visited my home in Denver. Eventually, her mother purchased a large SUV to accommodate the “gear” Lizzie needed to have when she wanted to see another piece of the planet. Lizzie wanted to go, and go often.
She and I took many trips together, from coast to coast, to Colorado, Wisconsin to visit her funny great grandmother Stevens. There were many stops along the way, but no place was more special for us than Coronado, CA. She would get out of the car and take a deep breath and proclaim that she could finally breathe because the air felt so good to her. And, then we would head off to a candlelight dinner at the Del or an afternoon on the beach hanging out without a care in the world.
She treasured her invitations to the Navy SEAL base where she would interact with the toughest warriors as I watched them turn to putty before my eyes. She had friends in all of the branches of the military and took her work at Operation Gratitude and on her own troop battery project as seriously as if the entire world depended on it.
One special I received from Lizzie was when Liz was 6 and an inpatient at one of her many hospital stays. A Long Beach dance studio donated a collection of costumes to the Child Life department at Miller Children’s. When she saw one in particular, her eyes widened and she sweetly asked if she could give it to her Gram. I arrived at the hospital a bit later to find Liz waiting with excitement to take me to the Starlight room for my surprise. She was very serious when she presented me with the “gift” and insisted that I put it on immediately and dance from the Starlight room back to her room to show everyone how cool I looked. I wanted to crawl into a hole, but ….. it was in good fun, so off we went …. Since then, she has often insisted that I wear it at home while cleaning or doing the dishes, because “THIS” is how she saw me. In her incredible imagination – Grammy in a sequined leotard was where it was at. I will treasure the "gift" for as long as I am alive.
But her imagination did not stop with a flowing dance costume. One year she insisted that I play Ariel in the little Mermaid play on her birthday and in another birthday play I was Thumbelina … are you getting the picture here? Liz and I were playmates and soul mates. She filled my heart with exquisite memories and an endless well of love.
Her brother inspired her sense of humor – he was her superhero and she was his earth angel. He often told me that when she laughed she coughed and when she coughed she cleared her lungs. On more than one occasion we had to pull over to the side of the road to let Liz catch her breathe from his constant jokes, and animated humor. He taught her to be strong and competitive. He did not cut her a break when they played video games or over homework. He inspired her to be strong and she inspired him to excellence.
Then came grandchild number 3. Lizzie’s baby sister Autumn. As soon as Autumn was born, Liz assumed the position of big sister. She changed diapers, fed her and wasted no time in passing on her knowledge. But by the time Autumn was one year old, Liz began to realize that they would be wearing each other’s clothes before too long. As a matter of fact, last year around Autumn’s 2nd birthday – Liz was in the hospital and I was spending the night with her. Before she went to bed, she decided to change her clothes - again. Her tiny little body scampered to the closet and pulled out purple shorts and a matching top. Liz disappeared into the bathroom – when she reappeared she proudly showed off her new outfit and then said. “Aren’t you proud of me Gram, I am finally big enough to fit into my baby sister’s clothes?”
Family was important to her and she kept track of each of us. Some of the family was near and others geographically far away, but none of us were every out of her heart. She wanted to know what the new dogs looked like when her aunt Jill would add another or two or more to her family. She wanted every detail about Jill’s new house in the mountains and she treasured the time she spent with Jill and Paul as precious moments.
But the tiny package has left an impression not only on her family, close circle of friends and her medical team. Liz has reached all corners of the world, to inspire, give hope and set examples of what love really has to do with it.
I write without speaking about her mother, Jennifer and her husband David. David is a rock who stands strong behind my daughter, giving her strength and support so she can be the most amazing mother I have ever met. I am so proud of her and the tireless job she has done with her family. She slept with one eye and one ear open listening for her daughter every night for 13 years. She found time to home school Lizzie, order medications, keep track of her schedule, give her treatments and keep her safe while creating an atmosphere for Lizzie not based on the limitations of Cystic Fibrosis, but for Lizzie to grow into the person we all honor today.
Jennifer without you, we would not have met our wonderful Lizzie Lulu. Our life is richer because of Lizzie and Jennifer. I can never thank Jennfier enough for who she is and what she gave to this world.
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