We are waiting patiently here in Los Altos and I realize I have not been a very diligent updater. I have an appointment with the tx team tomorrow and I will give a full report on my health status after I meet with them. It's been a rough few weeks but I feel like I am at least holding my own right now so that is encouraging.
For now, I just wanted to share something a little different. I have never recorded my dreams before and I usually can't remember anything about my dreams once I wake up no matter how much I want to recall them. I had a very vivid dream last week and it has stayed with me all week. In fact, I have thought of it every day since.
Dreaming about Lexi is a gift. It doesn't happen often, maybe a few times a year (that I'm aware of), but when I wake up and realize I've dreamed about Lex, I immediately try to fall back asleep into that same dream so I can see her again. It never works! Last week when Lexi was with me in my dream, I woke up and found to my surprise, I could remember every detail about the dream. I don't think it is a coincidence, I think I am supposed to remember this dream...especially as I am being wheeled into the operating room.
I was on an operating table, all prepped and ready to be transplanted. The room was big, light and spacious. Derek Shepherd and Meredith Grey may or may not have been there but Lexi definitely was. She was not only there, she was laying on the operating table with me. She was holding my hand and we were both calm and comfortable. As the surgeons started explaining the procedure to me; how they were going to put me to sleep and then make the incision etc. etc., I asked them where my sister was going to be as they were operating. They looked at me and said so definitively, "Oh, she's going to stay right there on the bed with you."
I thought this was a very unorthodox allowance and questioned if it was a good idea. In my dream, I didn't get the message because it was so real. But, when I woke up, I was struck with the significance and was grateful once again for the reassurance I am constantly receiving.
Showing posts with label Lexi. Show all posts
Showing posts with label Lexi. Show all posts
Tuesday, October 18, 2011
Thursday, September 8, 2011
"God Bless You, Honey."
This is what a stranger said to me last week as I awkwardly attempted to maneuver my oxygen on wheels around tables and chairs to exit a restaurant. A week before that, in another restaurant, a girl waited for me outside the restroom as I took Harrison potty to hand me a note. I thought she was waiting for the bathroom but she just handed me this note and quickly walked away. The note said she would be praying for me and that she believed in miracles. It was a very humbling moment. People are SO GOOD.
I looked at the man who had said, "God bless you, honey" to me. He had kind and sincere eyes, and I held them for a moment and then smiled and said, "thank you." The familiar lump of gratitude rose in my throat (that lump of gratitude has been showing up a lot lately!) and stayed there the whole ride home. Because of the "lump," it was hard to talk, so instead I just reflected on a few things.
Can I share?
I remember when Lexi had to start wearing oxygen. It was hard for her and it was scary for all of us. I remember the first day she wore it to school and how she bravely rolled it into her fifth grade classroom and how crushed she was when a boy called her "tube-face." I also recall how strong she got (emotionally) and how she used humor to diffuse her self-consciousness. When she noticed people staring at her she would startle them by quickly looking at them and pulling a face or start coughing violently and comment loudly that she hoped she wasn't still contagious! She was constantly cracking us up. She also would dress up her tank and even gave it a name. Lexi, with wisdom beyond her years, made the best of her tough situation.
I have dreaded crossing the "CF milestone" of supplemental oxygen for years. Lexi only wore oxygen for a few years before she got listed and in my mind, I knew that when it came down to needing supplemental oxygen, the situation was serious. When I could not get my O2 sats to stay up this last hospital visit, I got "the oxygen lecture" from my Dr.. I will never forget him drawing his diagram on the white board in my room and saying matter-of-factly, "It's time Sharlie. You will be doing permanent damage to all of your organs if your sats keep dropping and you don't use supplemental O2." It was hard...and scary. I thought about Lex a lot. I determined to channel her strength and humor and just deal.
The first few days home were kinda tough. Ryan and I ran some errands and I was acutely aware of people doing double-takes and looking at me. I even heard a girl ask her mommy "why does that lady have that thing on her face?" Even though I was embarrassed, I just smiled. I was self-conscious and it was an adjustment that I wasn't sure I would get used to. One of those first nights home, I was putting Harrison to bed and I was performing one of our night-time rituals of telling him something on his face that I love and then kissing it. I would say, "i love your eyes" and then kiss his eyelids, and, "i love your cheeks" and then kiss his cheeks, etc. etc. After I was done kissing all over his face, he looked at me and said, "i love your oxygen" and reached his little head up to mine and kissed the tubing under my nose. It was a blessing, a tender mercy, an epiphany. As my eyes blinked back the moisture that threatened to spill over, I thought to myself that if Harrison loved me and accepted me with my funny oxygen tube face, then I really didn't care what anybody else thought. It was a little gift that allowed me to see myself through my son's eyes of love and love myself a little more in return.
Since then, I have come to appreciate my supplemental O2 on a whole different level. Yes, I still get frustrated sometimes with the feeling that I am on a leash and I still get self-conscious sometimes when I see people staring but, I also realize that this cumbersome little machine is a gift. It is not only helping me stay strong enough to get a transplant, but is also attracting love and light to me through genuine good people like the man in the restaurant. On the car ride home I realized...for the most part, people aren't staring, they are CARING. I know, cheesy, but I don't care. They are looking at me and feeling empathy, they are hoping that I'm okay and maybe even appreciating their healthy lungs a little more. I don't like to be scrutinized but I will take all the healing love and prayers I can get and if the tube on my face elicits more of that, I'm grateful.
I know God IS blessing me and I know he blesses the kind, caring and wonderful type of people who would say, "God bless you, honey" to a hopeful girl pulling an oxygen tank.
I looked at the man who had said, "God bless you, honey" to me. He had kind and sincere eyes, and I held them for a moment and then smiled and said, "thank you." The familiar lump of gratitude rose in my throat (that lump of gratitude has been showing up a lot lately!) and stayed there the whole ride home. Because of the "lump," it was hard to talk, so instead I just reflected on a few things.
Can I share?
I remember when Lexi had to start wearing oxygen. It was hard for her and it was scary for all of us. I remember the first day she wore it to school and how she bravely rolled it into her fifth grade classroom and how crushed she was when a boy called her "tube-face." I also recall how strong she got (emotionally) and how she used humor to diffuse her self-consciousness. When she noticed people staring at her she would startle them by quickly looking at them and pulling a face or start coughing violently and comment loudly that she hoped she wasn't still contagious! She was constantly cracking us up. She also would dress up her tank and even gave it a name. Lexi, with wisdom beyond her years, made the best of her tough situation.
I have dreaded crossing the "CF milestone" of supplemental oxygen for years. Lexi only wore oxygen for a few years before she got listed and in my mind, I knew that when it came down to needing supplemental oxygen, the situation was serious. When I could not get my O2 sats to stay up this last hospital visit, I got "the oxygen lecture" from my Dr.. I will never forget him drawing his diagram on the white board in my room and saying matter-of-factly, "It's time Sharlie. You will be doing permanent damage to all of your organs if your sats keep dropping and you don't use supplemental O2." It was hard...and scary. I thought about Lex a lot. I determined to channel her strength and humor and just deal.
The first few days home were kinda tough. Ryan and I ran some errands and I was acutely aware of people doing double-takes and looking at me. I even heard a girl ask her mommy "why does that lady have that thing on her face?" Even though I was embarrassed, I just smiled. I was self-conscious and it was an adjustment that I wasn't sure I would get used to. One of those first nights home, I was putting Harrison to bed and I was performing one of our night-time rituals of telling him something on his face that I love and then kissing it. I would say, "i love your eyes" and then kiss his eyelids, and, "i love your cheeks" and then kiss his cheeks, etc. etc. After I was done kissing all over his face, he looked at me and said, "i love your oxygen" and reached his little head up to mine and kissed the tubing under my nose. It was a blessing, a tender mercy, an epiphany. As my eyes blinked back the moisture that threatened to spill over, I thought to myself that if Harrison loved me and accepted me with my funny oxygen tube face, then I really didn't care what anybody else thought. It was a little gift that allowed me to see myself through my son's eyes of love and love myself a little more in return.
Since then, I have come to appreciate my supplemental O2 on a whole different level. Yes, I still get frustrated sometimes with the feeling that I am on a leash and I still get self-conscious sometimes when I see people staring but, I also realize that this cumbersome little machine is a gift. It is not only helping me stay strong enough to get a transplant, but is also attracting love and light to me through genuine good people like the man in the restaurant. On the car ride home I realized...for the most part, people aren't staring, they are CARING. I know, cheesy, but I don't care. They are looking at me and feeling empathy, they are hoping that I'm okay and maybe even appreciating their healthy lungs a little more. I don't like to be scrutinized but I will take all the healing love and prayers I can get and if the tube on my face elicits more of that, I'm grateful.
I know God IS blessing me and I know he blesses the kind, caring and wonderful type of people who would say, "God bless you, honey" to a hopeful girl pulling an oxygen tank.
Labels:
Cystic Fibrosis,
Gratitude,
Harrison,
heart/lung transplant,
hope,
Lexi,
oxygen
Friday, July 29, 2011
She talks to angels ...

Today Lexi would be 31. On July 28th I will always celebrate the gift her life is to me. I miss her everyday. Sometimes I feel her talking to me or more accurately, speaking to my heart...
My mom always told me and Lex that she loved coming to tuck us in at night and seeing that we were holding hands even after we'd fallen asleep. We shared bunk beds so the one on top would hang their hand down and grasp the hand that would reach up from the bottom bunk. Can you believe we could fall asleep like that?! There are times I am compelled to look down at my hands because I feel like her hand is literally hanging down and holding mine. When I feel that warm vibration of love from Lex in the palms of my hands, I remember that I am not alone and that she is keeping her promise to be an angelic guardian.
I have felt her especially close lately as I accept and pursue the next step in my C.F. journey. After Lexi died, I felt strongly that when the time came, I would not opt for a double lung transplant. I witnessed the hell and helplessly watched the suffering Lexi went through post transplant and wondered at times what it was all for. Of course it was worth it for me and for my family because we got to have her for another borrowed 18 months, but was it worth it for Lexi?
It is hard to explain but I have felt the whisperings of Lexi's spirit to my spirit confirming to me that my experience will not be her experience. I know she wants and expects me to follow in her footsteps and fight like she did to stay on this earth and not take a single breath for granted. I have so much to live for and Lexi left a powerful Legacy. Putting her trust in the Lord and enduring joyfully to the end despite the pain was one of her most poignant lessons and I could not face her if I did not apply it in my own life.
Now that I am at this place, I am grateful that my hero was also at this place and showed how to walk the transplant journey with grace, humor and unbelievable fight.
Happy birthday Lexi, please maintain a tight hold on my grasping hands.
- Posted using BlogPress from my iPad
Labels:
Cystic Fibrosis,
faith,
family,
Gratitude,
hope,
Lexi,
loss,
lung transplant,
miracles
Wednesday, June 1, 2011
Day 11...Breathless Mom Fundraiser
Ask NOT and ye shall RECEIVE...
Last summer when I got sick and realized that a double lung transplant was probably coming sooner rather than later, one of my best friends of 25 years asked how she could help. When my only reply to Jessica was "pray for me," she decided to take matters into her own hands and asked my mom to set up a Medical Fund for me. Jessica and her sister Mique are the founders of Queen Bee Market. They ask the amazing vendors who participate in their market to share part of their proceeds with different local charities (that's how they roll... so generous!) They designated my medical fund to be the local charity for their fall 2010 market. I was simply overwhelmed.
As my journey toward transplant progresses, another dear family friend, Heidi Lee, asked my mom if she could also help. She created the "Breathless Mom" 30 day campaign to raise funds for medical expenses in the future. Just as I was overwhelmed with Mique and Jess's thoughtfulness and generosity in organizing and raising funds for me, I have been completely touched and humbled by all Heidi and her team have done for me. I know they have put in so much work and dedication to put the site together and the video together. My dear friend Lori took all the photos of me and my family and Denise Yamada, who covered Lexi's story in the news and has remained a treasured family friend, narrated the video.
I will go into the details of where I am "at" in terms of my health and transplant in a different post soon but the preparations for transplant have begun. I have felt a lot of guidance and peace during the last year and I am hopeful for a healthy, active future! The funds that have been raised have been such a blessing. It is one less thing that I need to stress and worry about as there will definitely be significant medical costs.
What amazes me is that I did not ask for my friends to do this for me, they just perceived a possible future need and took it upon themselves to help (in a MAJOR way!). I guess true friends usually do know what you need before you even ask for it. Incredible. For all who have supported these fundraising efforts, what can I say but thank you?! I feel so loved and blessed. I truly am surrounded by angels who lift me and give me strength, these campaigns have reaffirmed that to me!
Day 11 of the Healthy Home Challenge: Teflon toxicity!
From The Healthy Home book, "At high temperatures, Teflon is known to release potentially hazardous fumes and particles into the air. ...a nonstick pan at just 680 degrees F on a regular electric stove released at least six toxic gases, including two carcinogens, two global pollutants and a chemical that is known to be lethal to humans."
Wowzers! It also talks about how DuPont recommends that birds be removed from the kitchen before cooking with nonstick pans because they have been poisoned with the fumes and have suffocated after their lungs hemorrhage and fill with fluid. YIKES!
My lungs may not be as delicate as those poor little birds' lungs but I don't want to do ANYTHING to harm the 18% lung function I have left!
Today I bought a "green," PTFE (polytetrafluoroethylene) free skillet. I bought it at Target and it was about $30. I eventually want to replace all of our nonstick cookware but I use the same small skillet a few times a day, so for now, I just replaced the one I use the most. It's a start!
The book's simple solution for someone who must use a PTFE-lined pan is to keep the stove's burner on medium or lower and to never preheat an empty pan.
I have gotten such great feedback on these tips. Please remember to let me know if you are trying any of the healthy home tips and leave your contact info. either in a comment or in an email to sharlie@larsenglobal.com and I will send you The Healthy Home book as a gift!
Last summer when I got sick and realized that a double lung transplant was probably coming sooner rather than later, one of my best friends of 25 years asked how she could help. When my only reply to Jessica was "pray for me," she decided to take matters into her own hands and asked my mom to set up a Medical Fund for me. Jessica and her sister Mique are the founders of Queen Bee Market. They ask the amazing vendors who participate in their market to share part of their proceeds with different local charities (that's how they roll... so generous!) They designated my medical fund to be the local charity for their fall 2010 market. I was simply overwhelmed.
As my journey toward transplant progresses, another dear family friend, Heidi Lee, asked my mom if she could also help. She created the "Breathless Mom" 30 day campaign to raise funds for medical expenses in the future. Just as I was overwhelmed with Mique and Jess's thoughtfulness and generosity in organizing and raising funds for me, I have been completely touched and humbled by all Heidi and her team have done for me. I know they have put in so much work and dedication to put the site together and the video together. My dear friend Lori took all the photos of me and my family and Denise Yamada, who covered Lexi's story in the news and has remained a treasured family friend, narrated the video.
I will go into the details of where I am "at" in terms of my health and transplant in a different post soon but the preparations for transplant have begun. I have felt a lot of guidance and peace during the last year and I am hopeful for a healthy, active future! The funds that have been raised have been such a blessing. It is one less thing that I need to stress and worry about as there will definitely be significant medical costs.
What amazes me is that I did not ask for my friends to do this for me, they just perceived a possible future need and took it upon themselves to help (in a MAJOR way!). I guess true friends usually do know what you need before you even ask for it. Incredible. For all who have supported these fundraising efforts, what can I say but thank you?! I feel so loved and blessed. I truly am surrounded by angels who lift me and give me strength, these campaigns have reaffirmed that to me!
Day 11 of the Healthy Home Challenge: Teflon toxicity!
From The Healthy Home book, "At high temperatures, Teflon is known to release potentially hazardous fumes and particles into the air. ...a nonstick pan at just 680 degrees F on a regular electric stove released at least six toxic gases, including two carcinogens, two global pollutants and a chemical that is known to be lethal to humans."
Wowzers! It also talks about how DuPont recommends that birds be removed from the kitchen before cooking with nonstick pans because they have been poisoned with the fumes and have suffocated after their lungs hemorrhage and fill with fluid. YIKES!
My lungs may not be as delicate as those poor little birds' lungs but I don't want to do ANYTHING to harm the 18% lung function I have left!
Today I bought a "green," PTFE (polytetrafluoroethylene) free skillet. I bought it at Target and it was about $30. I eventually want to replace all of our nonstick cookware but I use the same small skillet a few times a day, so for now, I just replaced the one I use the most. It's a start!
The book's simple solution for someone who must use a PTFE-lined pan is to keep the stove's burner on medium or lower and to never preheat an empty pan.
I have gotten such great feedback on these tips. Please remember to let me know if you are trying any of the healthy home tips and leave your contact info. either in a comment or in an email to sharlie@larsenglobal.com and I will send you The Healthy Home book as a gift!
Friday, April 30, 2010
All his Eggs in one basket...
Easter Catch up!
Easter is always such a special holiday for me. I love the significance of this holiday and what it means to me personally. I love the opportunity to reflect upon the Atonement of my Savior and the reminder to me of His love, grace and presence in my life. Because of the knowledge that I have of Him and his sacrifice for me and for all of us, I experience peace and hope no matter what circumstances I encounter in my life, what a precious blessing this is. I know that because he rose on the third day and conquered death, that I too will live again and be with my family forever. I came to appreciate this gift with a deeper intensity after Lexi's death. I was comforted and buoyed up by the Faith that we would be reunited again. I cherish holidays that help solidify my Faith and Testimony of Jesus Christ. I also cherish every second I get to spend with my family and this Easter was a day filled with reflection, gratitude, hope and family.
Easter is always such a special holiday for me. I love the significance of this holiday and what it means to me personally. I love the opportunity to reflect upon the Atonement of my Savior and the reminder to me of His love, grace and presence in my life. Because of the knowledge that I have of Him and his sacrifice for me and for all of us, I experience peace and hope no matter what circumstances I encounter in my life, what a precious blessing this is. I know that because he rose on the third day and conquered death, that I too will live again and be with my family forever. I came to appreciate this gift with a deeper intensity after Lexi's death. I was comforted and buoyed up by the Faith that we would be reunited again. I cherish holidays that help solidify my Faith and Testimony of Jesus Christ. I also cherish every second I get to spend with my family and this Easter was a day filled with reflection, gratitude, hope and family.
Easter Brunch at Grammy and Grandpa's
Easter Egg Hunt...very successful!

He named all the letters in his name one by one and at the end when I asked him what those letters spelled he exclaimed with confidence, "MONSTER TRUCK!!"


Easter Dinner at Grandma Coco's
Buddies! (that's what they call each other)

Jaydn and Addie making cookie masterpieces

Classic Beck and Zachy

Soph and Grandma Coco

Loving my Boy



Easter Egg Hunt...very successful!
He named all the letters in his name one by one and at the end when I asked him what those letters spelled he exclaimed with confidence, "MONSTER TRUCK!!"
Easter Dinner at Grandma Coco's
Buddies! (that's what they call each other)
Jaydn and Addie making cookie masterpieces
Classic Beck and Zachy
Soph and Grandma Coco
Loving my Boy
Monday, April 19, 2010
Definitely Honored...
Here are four of my ANGELS, four of my heroes. My mom, my brothers Dax and Zak and my husband Ryan. My life is so blessed by these four people, they all take such good care of me and give me the encouragement and strength to keep fighting.
They are leaving in a few weeks on the most incredible adventure to climb to the base camp of Mt. Everest. I am so excited for them, so excited that they get to participate in something so magnificent, so surreal. I am always moved when I see people really living... not taking their lives, God's wondrous creations and good health for granted and just really LIVING! Their trek to base camp epitomizes this and inspires me!!
They printed special shirts to wear on the trek and I am definitely honored to be a small part of their trek in this way. The Shirts Read:
In Memory of LEXI.
To Honor SHARLIE.
With Hope for BEN, LAUREN...
and all those who fight to breathe.
Here is a picture of Base Camp. Just looking at the picture takes my breath away...not because of the lack of oxygen at this altitude but because of the majesty of this Mountain : )
Friday, March 5, 2010
Stand By Me...

Sweet Lex,
I'm struggling today. Every anniversary is different and today is an especially emotional one for some reason. My chest keeps involuntarily tightening and my vision is constantly blurred from the tears that threaten to spill over. I just miss you so much.
The thing that is difficult for me to comprehend is that you have been gone now for longer than you were here on this earth...15 years. It doesn't seem to compute, it doesn't feel possible that you have been gone for so long. I know the reason it feels that way is because you are still such a huge part of my life. I still share your story and weave it in with my own as I reflect on the intricate, elaborate tapestry that chronicles this journey I am on. I still feel you watching over us and sometimes in very quiet, sacred moments I feel prompted to look down at my hand and am reminded how our hands were forever connected here and know you are letting me know that you are still holding my hand.
Memories are like precious gifts that are wrapped and waiting to be opened carefully and with an acute awareness to the details that are forthcoming. They are always welcome even though sometimes they leave a tinge of sadness. The sadness is overcompensated by the joy of the reclaimed moment. Today one of those unexpected but welcomed gifts came to me, comforting me as I lay on my bed shedding a few warm, salty tears. I saw us lacing up our Lightening Rollerblades. Yours were fluorescent pink and mine were bright purple. We were a little timid on the roads but loved to skate circles around our 3 car garage. I can't remember whose idea it was to put the cassette player in the garage but the brilliance of being able to listen to "hey jude" and the soundtrack of "Stand by Me" over and over while we went round and round allowed us a short respite. Despite the ache I was feeling in my heart, I had to smile and be grateful for the gift of the memory.
Thank you for continuing to "Stand by Me." I feel you and I am obeying your admonition not to doubt your presence in my life. I see and feel you everyday in all the love I am surrounded in. Stay close.
Love, Shar-bar
More posts about Lexi:
"I love you more"
Golden Birthday
A Lesson Learned
Labels:
Cystic Fibrosis,
family,
Gratitude,
Lexi
Sunday, April 12, 2009
Hope and Peace
I gained a deeper and stronger testimony of the Atonement of my Savior when Lexi passed away. Suddenly I subconsciously knew that I had to reevaluate my beliefs and especially my belief in the Atonement. Would I really be reunited with Lexi again? Could I really be exalted despite my weaknesses, shortfalls and sins? Was Christ really aware of ME and did he really love me that much, that he was willing to take upon himself not only my sins, but my infirmities, my sorrows, and my pains as well?
I am so grateful for the powerful confirmation I received that the answer to all of these questions was a resounding YES! The Atonement became very real to me. I don't profess to understand how it works or comprehend the magnitude of it, but I can't deny my testimony. My experiences have witnessed unto me that Jesus Christ Lives and is my Savior, that he is aware of me and loves me and that because of his sacrifice, I will be reunited with my sister again and that I can be with my family for All Eternity. This testimony gives me hope and peace and perspective.
Thursday, March 5, 2009
A Lesson Learned

Sweet Lexi,
This is a unique anniversary. You were here on this earth for fourteen years and now today, you've been gone for fourteen years. There isn't a day that goes by that I don't think of you but on this day, March 5th, the events that transpired on the day of your death inevitably play out in my mind and all at the same time it is a very difficult day and a day of celebration. The hard memories are there but even more, the fun and goofy, the sweet and tender memories are there and they kind of balance each other out creating a paradox. Sometimes the memories open the wound and sometimes the memories are a salve for the wound.
As I reflected on some of those memories this week, I remembered a valuable lesson I learned from you. It was a painful lesson to learn but it has impacted my life possibly more than any other experience I had with you. I was an insecure high school student and I hated it when mom was late picking me up from school because I felt like a loner waiting on the grass with no one to hang out with. One day she was especially late and when she pulled up and I saw that you were in the car with her, I was frustrated because I knew that you had delayed her. It was definitely a process to get you out of the house, especially with your wheelchair. I knew if she would have left you at home she would have been on time and I said something to that effect when I got in the car.
Oh Lex, I know you know how many tears I have shed over this incident. It is the most painful regret I have. The insensitivity, the selfishness and the lack of perspective I had still just make me so angry with myself. You were quiet on the way home and later slipped a note under my bedroom door apologizing for making mom late and explaining how everyday you missed me while I was at school and how you counted the minutes until I would return home and be with you. You said you would beg mom to take you with her because you couldn't wait to see me and you needed the fresh air. You expressed your love for me and I had never been so humbled in my life. I was so so ashamed and hot tears rolled down my cheeks as my heart thudded in my tightening chest. It was physically painful to realize what I had done and how I had hurt you.
I know you forgave me that night as I begged for your forgiveness and hugged you while I cried. We talked everything out but I STILL have not forgiven myself for that and as much as I have suffered over my mistake that day, I am so grateful for the lessons it taught me. The most poignant lesson I learned and have INTERNALIZED is to never take my loved ones for granted. Lexi, I would give ANYTHING to have that moment back. I would give anything to have mom pull up in her car with you in the front seat...I would run and throw the door open and tell you how much I had missed you all day. I would hug you and not let go, I would look into your eyes and smell your hair and tell you, "I LOVE YOU so much."
I'm comforted now by the knowledge that I WILL have that moment again. I will see you again and until then, I promise the hurt you felt that day will not be in vain because you taught me to always have an eternal perspective. And with that gift I will treasure and appreciate all the precious moments, as momentous or mundane as they may be, with the people in my life.
I miss you Lex. I am grateful for the fourteen years I got to be your big sister and I'm grateful for the fourteen years that you have been my angel. Thank you for the lessons.
Love, shezbo
Monday, December 1, 2008
Breathe Easy Sweet Friend...
After being at Sanoviv for two weeks and then having our computer in the shop for another, I have a lot to catch up on. Lots of good, happy things but as I sat to write tonight, I felt like there would be a definite lack of authenticity if I couldn't share my overwhelming sadness at losing another friend to Cystic Fibrosis. It's consuming me tonight.
You'd think it would get easier for us, but it doesn't. Every new loss opens a raw wound that I didn't realize was so close to the surface that oozes with the memories of all the other losses including holding my sister against me as she gasped her last breath. It does not get easier. On the contrary...
Every new loss causes pictures to move through my heart and head like pictures on a movie reel of all the precious faces that I have loved and lost to C.F.. Starting with the first, which I will never forget...Shannon. We befriended each other as patients in the hospital when we were five years old and created an instant bond. I will never forget sitting at her funeral about seven years later and listening to the stories of how concerned she was about the boy in the next hospital room even when she knew she had only hours left to live. Then there was my sweet Lex and then Tara, Justin and Heather, then Ashley and Katie and too many from clinic to count. Now, sweet Robyn, a new friend I bonded with through blogging. We shared the blessing of both being "miracle moms."
I can see all their faces so clearly on that reel and remember the salty tears shed for each life while I second-guessed my own mortality and wondered if I would miraculously beat the odds or like my friends, become a tragic statistic confirming the viciousness of this disease. As much as I try to will the hope to come and comfort me, it's hard to feel it with leaking eyes and a broken heart.
However much pain I have felt, I do feel peace from knowing that I would not turn back the clock and not connect with these people even if it meant the aching could be erased. My life has been enriched and enlightened by my association with these earth-angels and their lessons and legacies sustain me when I am doubting and down. It's a hard club to be a part of but I wouldn't give up my membership...it is part of what defines me and who I am.
Robyn, breathe easy now and give Lexi a big hug for me. I know your precious Lola will feel you close always and be blessed by the love and devotion you poured out to her for the three years you were together. You, like many others, have a permanent place in my heart. Thank you for blessing my life. You earned those wings...FLY!
You'd think it would get easier for us, but it doesn't. Every new loss opens a raw wound that I didn't realize was so close to the surface that oozes with the memories of all the other losses including holding my sister against me as she gasped her last breath. It does not get easier. On the contrary...
Every new loss causes pictures to move through my heart and head like pictures on a movie reel of all the precious faces that I have loved and lost to C.F.. Starting with the first, which I will never forget...Shannon. We befriended each other as patients in the hospital when we were five years old and created an instant bond. I will never forget sitting at her funeral about seven years later and listening to the stories of how concerned she was about the boy in the next hospital room even when she knew she had only hours left to live. Then there was my sweet Lex and then Tara, Justin and Heather, then Ashley and Katie and too many from clinic to count. Now, sweet Robyn, a new friend I bonded with through blogging. We shared the blessing of both being "miracle moms."
I can see all their faces so clearly on that reel and remember the salty tears shed for each life while I second-guessed my own mortality and wondered if I would miraculously beat the odds or like my friends, become a tragic statistic confirming the viciousness of this disease. As much as I try to will the hope to come and comfort me, it's hard to feel it with leaking eyes and a broken heart.
However much pain I have felt, I do feel peace from knowing that I would not turn back the clock and not connect with these people even if it meant the aching could be erased. My life has been enriched and enlightened by my association with these earth-angels and their lessons and legacies sustain me when I am doubting and down. It's a hard club to be a part of but I wouldn't give up my membership...it is part of what defines me and who I am.
Robyn, breathe easy now and give Lexi a big hug for me. I know your precious Lola will feel you close always and be blessed by the love and devotion you poured out to her for the three years you were together. You, like many others, have a permanent place in my heart. Thank you for blessing my life. You earned those wings...FLY!
Sunday, August 3, 2008
Moonlight Memories...
Chels is gone now and I am going through withdrawals already. I miss Ben's hilarious comments, Lauren's silly dancing, Ethan nuzzling into my neck and Cam's infectious enthusiasm for everything. I also miss just getting to talk with Chels without holding a phone to my ear! We are counting the days until we are with you again!!
We had such a fun filled couple of weeks packed with family activities. Here's a mosaic of our family night at Moonlight Beach.

Here's a photo of our girls trip to Glen Ivy Hot Springs...so fun and relaxing!! Thanks mom for treating us to this amazing day!

And a few more of hanging out in Grandma Coco's spa : )



Those who know me know my family is what is most important in my life. I am so grateful for the love we have for one another and the memories we are creating together that fill my life with fun and meaning. I am grateful that I know how precious familial relationships are and know not to take any time I get to spend with my family for granted. Thank you Lexi for teaching me that... All who are reading, hug your family members a few extra times today in honor of Lexi : )
We had such a fun filled couple of weeks packed with family activities. Here's a mosaic of our family night at Moonlight Beach.

Here's a photo of our girls trip to Glen Ivy Hot Springs...so fun and relaxing!! Thanks mom for treating us to this amazing day!
And a few more of hanging out in Grandma Coco's spa : )
Those who know me know my family is what is most important in my life. I am so grateful for the love we have for one another and the memories we are creating together that fill my life with fun and meaning. I am grateful that I know how precious familial relationships are and know not to take any time I get to spend with my family for granted. Thank you Lexi for teaching me that... All who are reading, hug your family members a few extra times today in honor of Lexi : )
Monday, July 28, 2008
Golden Birthday

Today Lexi would have turned 28...her Golden Birthday. My mom, Chels and her kids, and Harrison and I went to visit her grave and share with the kids some of our favorite memories of her. We told them how she used to dress up her Oxygen tank in an old sweatshirt and her GAP baseball cap and how beautiful her long fingers were. We told Lauren how much Lexi loved her American Girl Kirsten Doll that she now gets to play with. We laughed about how she would do her PeeWee Herman dance on the tip of her toes and how she was a little boy crazy. We even sang her favorite Sound of Music song!
I laid my cheek down against the top of Harrison's head and again thanked Lexi silently for the lessons she taught me. My memories of her and how she lived her life still influence me every day. My hope that she is pleased with the way I am living my life puts things in perspective for me and helps me remember what is important.
Most of the time I can reflect without feeling that sadness. I know what I believe and how much hope that gives me but sometimes I just can't help it and the desperate longing comes quickly and feels as fresh as it did that first day without her. On those rare occasions, I let the tears flow, honoring them and welcoming the release they offer. This happened on the road trip I took recently with my mom to Utah. A special song triggered the emotions and my mom just looked at me and said, "I know, it's okay," and let me cry for the next ten minutes. Afterwards, I feel like I have to apologize to Lex and explain that I know she is with me and that I am okay but then I feel foolish because I know she knows and understands more than I can imagine.
Although I feel peace about Lexi's passing, it's hard sometimes to not visualize what life would be like if Lexi were still here physically with us. I think about how we might be having our babies at the same time and how Harrison would love his aunt Lex. There is never a family gathering that I don't think about her and hope she is looking down on us and smiling at our JOY and looking forward to our amazing family reunion.
Happy Golden Birthday Lexi, your birth and incredible life were a gift to everyone who was blessed to know you. Our eternal bond is one of the greatest gifts of my life and something that keeps me going when life feels hard.
Wednesday, March 5, 2008
"I love you more"
13 Years... As I laid in the grass beside your grave today with my son crawling all over me, I tried to conjure specifics. I am blessed to feel your presence and your spirit often but after 13 years, I am finding it harder and harder to keep the details from getting foggy. It is my greatest fear. I want to smell your smell and feel your hand in mine and hear your voice and remember what it was like to eat our after school snack and talk about our crushes and then sing the sound of music in front of the huge living room mirror giggling through the whole thing. I can still hear the spoon clinking against the glass as we mixed our Nestle Quik and I can still see your long fingers as you pluck the strings on the guitar you bought from the Elder in our Ward so he could buy a new bike. I remember your mustard colored Hooded Gap Sweatshirt and your thrift store jeans. I remember wheeling your wheelchair and the soothing purr of your Oxygen machine in the hall. I remember our laughing fits inevitably turning into coughing fits and the sleepless nights in the hospital watching Arsenio Hall and pretending to be asleep when the nurses would check in on us.
Lex, when I am able to recall these precious moments, I am happy...not sad. I miss you desperately and there is definitely anguish but it is overcompensated by gratitude for the honor of being your sister and best friend and for the time I had with you on this earth. I am comforted by the visions of our reunion and that we will have Eternity to share our love. I know you have had a hand in every triumph in my life and have helped me walk through every trial. Your legacy continues to teach me and give me strength. Thank you sweetheart for being there still. I love you so much.
Ryan took Harrison to the car and let me have my own moment with you and I could hardly force myself to turn away from your grave. I knew you were there. I know you are watching over us. I love you more.
Love, Shezbo
Saturday, November 24, 2007
...that your JOY might be full
I can't remember a Thanksgiving Day when my JOY was more full. This has truly been a momentous year for our family, a year filled with the Miracle of Harrison! As our family went around and told what we were thankful for this year I dreaded my turn because I knew there was no way I could possibly articulate how grateful I was for the blessings in my life. I babbled and tried to form coherent sentences through the tears. I'm afraid it wasn't very pretty. I said to Ryan as we drove home, "I wish I could have a re-do on my turn...I'd do so much better!"
Here's my RE-DO...
I am so grateful to be alive, I love my life and I know it is a gift. I know my life is being prolonged and I intend to fill my precious moments with what is most important to me. I know no greater joy than spending time with my family. I love them all so dearly and my love for them really defines me, it's who I am.
Lexi~ I am so grateful for your lessons that remain with me. You are so much a part of who I am and I miss you, especially during these special holidays. However, I know that you are watching over us and I am grateful that I can feel your presence on such a regular basis. Thank you for staying close, I love you.

Mom~ You are my best friend and our relationship enriches my life in the most beautiful way. I know no one more generous and am humbled to be the recipient of that generosity on a daily basis. I would love to make it even but the scales will always be unbalanced, I can't keep up with you! Truly, thank you for everything. Most of all for supporting me when I told you I was pregnant. Harrison is yours too, I could never have done it without you.
Ric~ Thank you for loving my mom and making her so happy. I know it hasn't been easy for you with the four most overprotective kids looking out for their mom but we know you adore her and for that, we are so grateful to you. Thank you for your gift in Hawaii, it meant so much to me and Ryan. Thank you also for being such a great Grandpa to Harrison. He loves you too!

Dax~ I can't think of a time when I needed you and you weren't there. You have been a dad, a brother and a friend. Thank you for coming to the hospital, I know I wasn't talking much and couldn't express then how grateful I was but it meant so much to me. You'll never know how much strength that gave me and I needed it more than I ever had in my life.
Sanam~ You are such an awesome sister. I can't begin to thank you for all the service you have done for our family. When I think of the meals alone you have cooked for me when I've been sick and especially while I was pregnant, I just get a huge lump in my throat. I hope you know how much we appreciate all your service, your delicious meals but most of all, your love.
Zak~ You always bring a smile to my face! You have also been a dad, a brother and a friend. Ryan and I are so grateful for the mentor you have been to us in USANA and for the support you give us not only in business matters, but also spiritually. Thank you for using your priesthood to bless me. I am so grateful to know you will always be there for me. I love our friendship and how easy it is for me to talk to you.

Kelli~ Thank you for your faith. You always believed we could have a baby and your encouragement gave us hope and strength. Thank you for giving me a compliment I will never forget and forever treasure... you said, "Sharlie, I know you love our kids like we do." That was powerful coming from you and it is true. I love my nieces and nephews the same way I love Harrison, as if they were my own...
Chels~ I love you so much. You are one of the few that understands what I am going through, I feel your empathy every time we talk. Whenever I need to laugh, I can bring to my mind countless memories of Australia, Vegas, Palm Springs, birds swooping, treadmills, etc. and I can laugh out loud! Whenever I need strength, I can bring to mind how you have dealt with your trials and the kind of mom you are to your precious angels.
Cam~ Our family is so lucky to have you. I've loved you from the moment Chelsea brought you home. You oozed goodness, fun and strength of character. My first instincts about you have proven true. You are such a wonderful husband and I love watching you interact with all the kids in the family. You add so much to our family.

My ANGELS~ Jayden, Ben, Sophie, Zachary, Addie, Lauren, Beckett, Kaya and Ethan~ With every new spirit that comes to our family, my heart expands more than I thought possible. My love for you all lifts me, heals me and gives me a reason to keep fighting! Watching you interact with each other and with Harrison literally makes me feel like I know just what Heaven will be like... You fill my life with joy and fun and love!
Terry and Linda~ Thank you most of all for raising Ryan to be the man that he is. I hope to follow in your footsteps and raise my son to be a man full of passion and Christlike love for all people, a man with principles and the highest standards. I love you both so much and am grateful for the support and love you give to me and Ryan. Thank you also for being the Best Grandparents. Harrison adores you and my heart swells to watch you with him. You are such a special part of all of our lives.

Ryan~ There just aren't words. I am awed by the husband you are to me every day. Thank you for your patience with my weaknesses and for making me want to be my best self in all situations. Thank you for taking care of me physically, emotionally, and spiritually. You truly raise me up. Thank you most of all for the daddy you are to our son. When I see you holding him, bathing him, feeding him, loving him...I fall more and more in love with you. I am so blessed to be yours.
My Miracle~Harrison, you are my whole life. Everything I've ever wanted, dreamed of and prayed for. Every time I threw a coin in a fountain, every time I wished on a star or blew out candles, I was hoping for you. Our Father in Heaven has poured out his blessing upon me and I will strive to be worthy of the blessing that you are every day of my life. I have never known such Joy. You are my reason to live, I am a MOM!
My faith in the Lord Jesus Christ sustains me and I am grateful that because of His Love and Sacrifice, I will be with my loved ones for Eternity. I am surrounded by angels on both sides of the veil, those who have passed and those that are on this earthly journey with me...because of this and my knowledge of the Gospel, my JOY is FULL.
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