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Susannah's Story "There is no chance, no destiny, no fate
that can circumvent or hinder or control
the firm resolve of a determined soul ." 
Journal
Wednesday, September 24, 2008 7:15 AM CDT Today marks two months since Susannah journeyed to heaven.
Oh how we miss her! It seems fitting, on this day, to share the following tribute. Sure to make you both laugh and cry, this beautiful story personifies our girl.
SUSANNAH'S STORY
by Cindy Beck, August 2008
The pint-sized girl stood looking at me with her hands on her hips. Her thick crown of long, dark hair was caught up by her trademark bow of many loops. As we stood sizing each other up, she giggled and I gulped. After 28 years of teaching at the same school, I had a brand-new assignment which included teaching this medically-fragile student in her home.
Separated from my longtime teaching friends and very familiar surroundings, I felt like a barnacle pried from a pier. Looking down at this little girl who, very clearly had a mind of her own and presented with a set of circumstances that I had never before encountered in my career, I wondered if I would know what to do.
As the days turned into weeks, months, then years of teaching Susannah, I came to know a very unique and enchanting child. The days when I became “Miss Cindy” and sat on the floor working with Susannah, her extensive collection of dollies and stuffed toys as classmates, were as bright as her yellow bedroom that was our classroom. A girl who was all about music, tutus, tiaras, ballet, bows, beads, and Barney, Susannah was both silly and sassy as we negotiated the joys and challenges of teaching her sign language. Slowly, I started to have a heart for my new job and a deep sense that there was a higher purpose in this assignment.
Amid the joy of those days that I spent with Susannah, there nevertheless existed the underlying reality that she was battling a syndrome for which there is not yet a cure. As Susannah’s health declined, she was admitted to Children’s Hospital, where she was to spend the last year of her life. Susannah’s hospital room, by the magic of a mommy who essentially never left her daughter’s side, took on the colors and decorations of the changing holidays and seasons. Even as she weakened, Susannah’s spunk continued to charm the world, including doctors, nurses, and other staff in the hospital.
During the last three months that I visited Susannah at Children’s Hospital, my role morphed from teacher to family friend. Though determined to continue to make the visits, it was difficult to go and find Susannah amidst increasing numbers of tubes, cuffs, and machines. Best-forever-friend extraordinaire, Merle Harris, began to accompany me on these visits to the Pediatric Intensive Care Unit and soon became known to the family as a welcome visitor.
The day that Susannah died is best captured in the words of her parents: “ Susannah Jacqueline White, age nine, realized true and everlasting peace on Thursday, July 24. Just as she lived, Susannah died with grace and beauty, surrounded by love”.
Planning a funeral that would, to the last detail reflect who she was, Susannah’s mom and dad chose her favorite bedtime music - Bach’s “Air on a G String” - for the prelude. They knew that having a musician who also knew Susannah would lend special eloquence and, as if by grand design, they did know such a person! When asked to play this piece on her cello, Merle accepted with honor.
In attendance at this celebration of Susannah’s life were friends, family, doctors, nurses, teachers, care givers and countless other folks from all over the world who had joined the family on their journey that was filled with both heartache and love. It somehow seemed fitting that the service was dramatically punctuated by The Blue Angels zipping through the sky. The procession from the church to the cemetery caused people to step away from their homes, gardens, and grocery shopping to see the glass-encased caisson that led the way, drawn by a steadfast white horse.
For that day, as on other days of joy and sorrow, it became apparent that God had again granted grace sufficient. As I sat immersed in the music, liturgy, and prayers of the service, I gave thanks for many things. Most of all, I gave thanks for the life and the love of a pint-sized girl who giggled and stamped her foot with her hands on her hips. I also gave thanks for the very fine cellist playing the velvety love-notes of the goodnight music of this little child, who, amidst praise and alleluias, was commended to life everlasting.
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Susannah’s beloved teacher, “Miss Cindy”, was asked by her church to write this piece for their monthly newsletter - the story of her very special student, for whom that congregation (and many others) had so faithfully prayed. Her best friend Merle, also a member of that congregation, is a concert cellist in the Bellevue Philharmonic Orchestra. Two incredible and kind-hearted ladies, brought into our lives by sweet Susannah!
Thursday, September 4, 2008 11:11 PM CDT
It’s now been a month and a half since we said goodbye to our sweet Susannah. That day, as she had so often before, she blessed us with immeasurable gifts. Though certainly the saddest day of our lives, it was also incredibly special. Perfect. Ever brave and resolute to the end, despite her fragile being, it seems that Susannah knew she had things left to do before taking flight.
Thanks to some very dear and loving folks, our little lady was fortunate to spend her last day, away from the sterility of the PICU, back down on the transplant unit – her home away from home for so many months – in a room, especially created and decorated just for her, to have the all the luxuries of her very own cheerful, blooming yellow bedroom. Miss Susannah made the journey to her lovely new room, not in a hospital bed, but in her signature red wagon, accompanied, of course, by ALL of her babies. En route, even with her situation growing more tenuous by the hour, in true Susannah fashion, she managed to enjoy one last wagon ride in the park (amid an impressive entourage of very dedicated and innovative doctors and nurses).
Susannah then held strong as many dear family members and hospital staff, now her friends, came to bid her farewell, read her stories, sing her songs, and remind her just how much she touched their hearts. Most of all, she waited for us, the three people who love her most in this world, to be ready, to tell her it was okay, that we would be okay. It was clear that once she knew we were at peace, she was at peace. Late that beautiful, sunny July afternoon, moments after Susannah’s soul soared from our arms, Madeline spotted an angel, in the shape of a cloud, directly outside the window … courtesy, no doubt, of her ever-adoring baby sister.
Madeline and Susannah's famous angel - July 24, 2008
... and a close up!
Although our loss is daunting, and the pain immeasurable, most of the time it simply doesn’t seem real. Mainly we notice an enormous, empty “Susannah shaped space” in our lives and in our hearts. We often find ourselves feeling just plain numb. Perhaps this is yet another of her many gifts to us, a means of easing us into our new situation. Reality and finality will arrive, we know, in time. For now though, we are taking each day as it comes. Every evening we share a special Susannah moment with one another, and without fail, each memory evokes a smile or giggle. In spite of her challenging circumstances, Miss Susannah managed to exude happiness every single day of her life and we are finding, even in death, that gift remains.
Much love from Seattle and above,
The Whites
Thursday, August 7, 2008 2:14 AM CDT
The last two weeks without our sweet Susannah have been surreal. We miss her incredibly. Yet, we have found some sense of comfort and peace in the outpouring of support that has been lavished upon us in the form of notes, cards, emails, flowers, gifts, and the company the great many who were able to attend Susannah’s services. Her farewell was beautiful, perfectly suited for the princess that she was. We are grateful for all of the memories, photos and stories of Susannah that you have, and continue to share with us. We are still trying to find our footing, but please know that in the midst of it all, we are deeply indebted to all of you who are there, have been there and will continue to be there to hold us up.
As requested by many, below you will find Klane’s remarks, given during Susannah’s funeral mass:
July 31, 2008
“Today we are here to celebrate. Yes, celebrate. We are here to celebrate a courageous, lovely, nine year-old girl, who passed through this world, having left an enormous swathe of warmth and love in her wake. We are here to celebrate the joy of life, the joy of life that Susannah embodied, and that each of you here, who knew her, if even in passing, experienced. That is why there are so many family and friends here today, from all four corners of the United States and beyond, to celebrate our daughter and sister, Susannah Jacqueline White.
“While we have often received compliments on Susannah’s strong persona, and how this must be a direct reflection of our “wonderful” parenting, I truly believe that the real wonder of Susannah was absolutely intrinsic to her being. She was a very special little girl. I do wish that we could take credit for such an astonishing young lady, but we cannot. There are a number of different descriptors that fit Susannah, and I’m sure that each of you will have a vivid memory of any one of these: funny, curious, happy, gregarious; gracious and forgiving; mischievous, sassy, willful, sometimes rigid, very stubborn, and perhaps, even at times, devious, but most of all loved. We all have pictures in our minds of her actions: her deep belly laugh, her aversive tactics to get out of any particular situation that she wasn’t necessarily interested in, cuddling on the couch with a friend, twirling in her tutu, tapping her sparkly red shoes, smiling with her eyes while the rest of her face was covered with a mask, and perhaps most of all, her trademark stomping of her left foot with her hands on her hips, accompanied by a laugh and smile that would capture any heart. She was truly extraordinary.
“I would briefly like to share with you a small, intimate part of Susannah’s and my relationship. Every night, Susannah and I would say a bedtime prayer together. This was a prayer that started out when she was “little” and then evolved and grew in length over the years. Now, as many of you know, Susannah was a creature of habit, so the prayer was the same, every night, and followed a very orderly sequence. We would always start by asking God to keep us safe over night - “I pray the Lord my soul to keep”. It took me a long time to figure out that “keep” in this context was meant to suggest “to care for”, not to be sequestered from us. But now I better understand this connotation, and from this point forward, knowing that my little princess lies safely in God’s hands, I can continue to pray that Susannah is kept and cared for, and know that she will never be sequestered away from my heart.
“Nonetheless, we would then continue on by praying for each of the individuals who were an important part of her life. You have to understand that Susannah lived in a very small world, with a tight-knit circle of friends and caregivers. That said, it is even more amazing to think about the number of people that she touched, given the protected life that she lived. Now then, we always started out with family, but quickly moved on to all of the other special people in her life. We also prayed for all of the special places, foods, TV characters, etc. in her life that gave her joy, or that at least made her stronger.
“The list grew considerably over the years and evolved as we moved from San Diego to Dallas and then on to Seattle. At times I would make suggestions to her about different people, places, characters or activities that I thought we should add. As she would lie in bed, holding her silky blanket, always surrounded by the “chosen few” dolls or stuffed animals for that evening (you know, Barney, George, the Bitty Babies, whoever they might be that night), I would say “Susannah, what do you think about this?” She would then respond with either a quick and stern shake of her head and a grunt, saying “NO!”, or she would smile, usually with her thumb in her mouth, and say “SSSSSSS”. We would always conclude the prayer with a statement of hope for good things to come in the next day.
“So, in this semi-democratic method we came up with the following prayer. Please keep in mind, for all of you who know my sleeping habits, that it was all I could do to get through this prayer, without falling asleep at the wheel, so to speak, thus I did take the liberty, over the years, of condensing some of the important people into groups. That said, please don’t be offended if you don’t hear your name. I will say that there are certain people who were particularly close to Susannah who get mentioned by name, but regardless, Susannah loved everyone that she knew, so even if you get lumped, know that you were an important part of her life. This was her way of saying thank you. I will forever remember this little prayer that we would say, and I will say every night, keeping Susannah eternally a part of my heart and soul. I would like to celebrate that notion by sharing this prayer with you:
“Now I lay me down to sleep, I pray the Lord my soul to keep. Bless Mommy, Daddy, Madeline, Grammy, Poppy, Grandma Dona and Papa. All of my aunts and uncles, my cousins and friends, and teachers, and therapists and nurses. The moon, the stars, the cats and dogs, the swings and slides, going to the park, driving in the car with Poppy. Babies, “binkets”, Barney, Big Bird, Elmo and Clifford, George, Captain Cock-a-Doodle Doo, Dora, Blue, Bear in the Big Blue House, ballet, popcorn, chocolate. Allie, Gracie, Mr. Greg and Miss Lori, Paddy, Peanut, Pebbles (the neighbor’s pets), Tony, Toni, June and Miss Billie. “Shotters” (shots) and ice cream (which always came after shots). Mr. Bob, Ms. Candy and Gigi. Amen. First we go “night, night”, then we have sweet dreams, and then we wake up in the morning to a bright, new day!”
“With those thoughts I leave you, and will forever celebrate every new day, with each and every one of you, for and with Susannah.”
Sunday, July 27, 2008 1:30 PM CDT
As published in the Seattle Times/ Post-Intelligencer and the San Diego Union Tribune …
Susannah Jacqueline White, age 9, of Seattle (Laurelhurst) realized true and everlasting peace on Thursday, July 24, 2008. Just as she lived, Susannah died, with grace and beauty, surrounded by love.
Born on April 15, 1999, in San Diego, California, her courageous battle with Hurler Syndrome (MPS 1) and the sequelae of two bone marrow transplants was awe inspiring and nothing short of remarkable. Even in the face of illness, Susannah always and unequivocally loved life. A silly, sassy girl who could light up a room with a simple smile, giggle or shimmy, Susannah delighted all who knew her by twirling in her tutu, laughing and dancing, stomping her foot with her hand on her hip.
Susannah leaves behind her parents, Amy and Klane White of Seattle and her wonderful, caring and beloved big sister Madeline; also her maternal grandparents Jackie and Tom Teichmann of Huntington Beach, CA and her paternal grandparents Dona and Jerald White of Oceanside and Del Mar, CA. She is also survived by her many aunts, uncles and cousins, in both Washington and California; also friends, therapists and teachers, too numerous to count, who were such a tremendous part of Susannah’s much shortened journey here. Susannah’s family acknowledges and is deeply grateful to the doctors, nurses and staff at both Seattle Children’s Hospital and the University of Minnesota Hospital for their steadfast care and commitment to Miss Susannah.
Family and friends may call at a Vigil Service in the chapel at St. Stephen’s Episcopal Church on Wednesday evening, July 30 at 6:00pm. The Funeral Mass will be celebrated on Thursday, July 31, 2008 at 11:00am, also at St. Stephen’s Episcopal Church – 4805 NE 45th Street Seattle, WA 98105, followed by burial at Calvary Cemetery.
Remembrances honoring Susannah may be made to The National MPS Society – PO Box 14686 Durham, NC 27709-4686 (www.mpssociety.org).
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A message from big sister Madeline:
"I am wearing yellow because it is Susannah's favorite color ... black is sad".
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Hotel Suggestions (in order of proximity):
Silver Cloud Inn - University
5036 25th Avenue NE Seattle, WA 98105
800.205.6940 or 206.526.5200
Watertown Hotel
4242 Roosevelt Way NE Seattle, WA 98105
866.944.4242 or 206.826.4242
Silver Cloud Inn - Lake Union
1150 Fairview Avenue N Seattle, WA 98109
800.330.5812 or 206.447.9500
Friday, July 25, 2008 3:30 AM CDT
Late yesterday afternoon, held tightly in the arms of her mommy, daddy and amazing big sister, Susannah Jacqueline White, finally realized true and everlasting peace. Just as she lived, Susannah died, with grace and beauty, surrounded by love.
Even in the short few hours she has been gone, the loss of our sweet princess has already left a gaping hole. We are trying to take solace in knowing that Susannah's incredible spirit, will be in our hearts and in our souls forever.
At present, we have no clear long or short term plans, just heartache and fatigue. The days will continue to unfold regardless of our ability or desire to face them. Please look to this website for further updates as plans are made.
With love,
The Whites
Wednesday, July 23, 2008 6:30 AM CDT
It has been a very worrisome week for Susannah. Our little lady continues to put all of her tremendous will and stubbornness into her daily fight, but things have been getting tougher. Still, even with significant sedation on board, her sparkling personality shines through. Susannah has occasionally managed to scrap her way into signing requests for Madeline, Mommy, Daddy, driving, Barney and even Big Bird (one has to love her priorities). Despite these efforts, Susannah continues a slow backslide, particularly with regard to her lungs; and her heart is doing everything it can to keep up. But as we continue to allow her every available medical opportunity, Susannah’s little body seems to be telling us she is very tired.
Madeline has been incredible, strong and wise beyond her years. She is an exemplary big sister. Susannah loves her so much, and Madeline returns that love equally and unequivocally. In the face of her fears and anxiety, Madeline decided that Susannah needed an ice cream cake party last night. Several of Susannah’s favorite nurses, now our friends, from downstairs, came in from home at 10 o’clock to join us; Grammy and even one of our favorite docs were with us as well. The nurses brought in ceramic supplies from Paint the Town and we all got creative. Madeline led a group effort in making a garden stepping stone with both sisters’ footsteps imprinted in concrete. We listened to the Beach Boys “Be True to Your School”, one of Susannah’s favorites from Full House, and watched Barney’s “Beach Party” (aka “the hula girls video”). Best of all, we all wore princess crowns to celebrate the occasion of just being together for another day.
While it is not entirely clear what the future holds for our sweet Susannah, in the end it will be perfect. Otherwise, we continue on day by day, hour by hour. While we do this, we go forward, knowing that we have nine precious years of memories to affectionately look back upon. This little girl has touched so many lives, and by extension our lives have been duly enriched. The love that flows effortlessly from others through our princess, to us, continues to do so. Even now, in these most precarious moments, Susannah’s circle of adoration continues to grow, and we are fortunate enough to be part of it. There is so much graciousness in this world, one merely needs to look in front of themselves to appreciate it.
All our love,
Klane, Amy, Madeline and Susannah
Read Journal History
Hospital Information: SETTLED IN SEATTLE!
3421 West Laurelhurst Drive, NE
Seattle, Washington 98105
Links: http://www.caringbridge.org/page/hopeforjulia ~ Julia Moran
http://www.missmollyb.com ~ Molly Birmingham
http://www.caringbridge.org/ok/dalton ~ Dalton Torgler
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