Close

CaringBridge Is Funded By People Like You

Make a Donation to CaringBridge

Honor Lauren Elizabeth with a tax-deductible contribution to CaringBridge today. Click here to make your donation.

Lauren Elizabeth’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated about Lauren's fight against Leukemia. We appreciate your support and words of hope and encouragement during this time when it matters most.                                                                 

 

 

Latest Journal Update

Flying Shoes and Letting Go of Perfect

     Lauren started school, kinda.  Sometimes I wonder what in the world is happening to our family, but I think I at least see a pattern.  Lauren was soooo excited about starting school this year; she could not wait.  She was excited about walking with her classmates on the first day.  The whole 8th grade class at SMM meets for breakfast at one of the student's houses and then walks to school.  Lauren loves her class at SMM and is anticipating having the best year ever since she will graduate this year and go on to high school next year. 

    Ok, so things don't always work out as planned, especially not for us.  Maybe we just get too excited.  But, in the middle of the night Lauren woke and felt really sick.  She had a bad headache and was dizzy.  By the morning, she threw up multiple times and needless to say, did not walk to school with her friends or have breakfast with her class.  Some of her friends wanted to get her in the swing of things and made plans to walk with her the next day.  No such luck, she had to stay home again since a fever was added to the mix of yuck.  Big tears and big disappointment followed.  She was frustrated that she was sick.  She was out of the loop of the first week of school.  She began to get worried about getting behind.  She was a bit mad.  Wow!  Big emotions when you are thirteen, but also patience and big smiles.  So, we practiced settling down and just going with the flow.  We toned down excitement and emotions and just let things happen.  Like most of our ways of coping in the last couple of years, we practiced breathing and being grateful.  Ok, so it wasn't going to be the best day ever, but it wasn't cancer. There is no way when those fevers and illnesses come out of the blue, that isn't the worry back in the recesses of my brain.  As the mom, I worry that she has those worries.  Her sweet smile and sunny disposition say "no" she is fine and dealing with it all so well.  But, that is the biggest lie I have told myself for a very long time.  It is the chicken way out and it is exactly what has put a lot more stress on my little friend.  So, that is what I realized this week.  Realizations are good and this has to creep out to the forefront bit by bit.  There needs to be less pressure on Lauren to make everyone else feel better. She needs to be able to admit that she worries about that too.  Lauren's big emotion and anger at the unrelated things are more connected to the things that nobody really wants her to admit.  Even two years after stopping her treatment, life is just plain hard for her.  Everyone wants to say she is doing great and she is filled with grace and has special gifts to cope with all of this.  But, the truth is, she doesn't.  She is just too sweet to say it is just too damn much sometimes and she can't handle the continuous disappointments and tough stuff.  She was never the kid that flew off the handle and slugged someone in the gut or told her teacher off when they were being a jerk to her or had a tantrum on the volleyball court because she didn't get what she wanted.  She has just stuffed it and continued to be the good girl.  But, she feels those things.  She also feels pressure to handle this all very well.  Too well, actually, for a 13 year old girl.  I am waiting for the phone call that she has melted down and pounced on someone.  She does it at home.  She threw a shoe at my head on a day when it all piled up.  A few other nights like that made me realize that something has changed with my Lolobelle.  Where is my little sweet, cuddly, freckle-faced girl?  She hates me keeps running through my head.  I have to calm down and realize the pressure of making up time and constant battles has gotten to her and she is dumping in a safe place.  So, it does hurt my feelings, actually too much so.  I am toughening up.  I am helping her learn other ways to cope.  I am trying to be patient.  I am trying to get to what she is really feeling and I am trying to get her to talk to people and say she needs a little more help.  She needs more help in school.  She needs to be real to her friends and learn to lean on them.  She needs to get more help from us, her family.  But, in the meantime, we need to dump all our expectations that she is an angel on earth and "special" because of what she has been through and realize that this kid has been through extreme trauma and now has to try to catch up to her peers.  She has so many gaps in her learning, chemo brain, and physical pain.  She gets sick easy and can't communicate why she is so confused.  She has bad dreams and real fears.  She has 13 year old dreams of playing on a national volleyball team and seeing Taylor Swift again.  But, more than anything she wants to be just like everyone else.  She wants this to be over.  But, it isn't.  Life is different and even though it is two years out, it is way more different than she thought.  Even though she celebrates new things about herself, she is still grieving the loss of who she was.  I see it in her all the time.  I guess I need to communicate more clearly how much I love the girl she is.  Yes, she used to be as gentle as a butterfly....but, now she stings like a bee!  That shoe really did hurt my head, but it did get my attention.  She is still a fighter.  It is ok that she is fighting me.  I guess, she is "special" and isn't giving up on herself.  But, I too have learned something.  I need to not care so much that people think we are all handling this that well.  I have been so worried about not being that "crazy" parent.  The crazy sport's mom or the crazy school mom.  But, I forgot when I was a teacher what I learned about that crazy parent.  After I got over my ego as a teacher and realized these so-called parents just loved their kids and wanted to be heard, I softened and grew as a teacher.  Instead of acting defensively, I just listened.  I realized that most of them just wanted to know their kids were in safe hands with someone that understood them and cared about them.  I started seeing them differently and became thankful.  Kids that are struggling need adult help and sure, there are better ways to handle it then to come in and attack people.  But, sometimes no one listens and you have to throw that shoe at someone's head to say, "I need help!" I think that is where Lauren is.  When something happens to someone everyone swoops in and helps, but when the struggle goes on and on, we tire of it.  I think that is where we have all been.  But, that doesn't change that someone still needs help.  I have to build up my reserves and find new ways to help.

     So, the third day I took Lolo to school, but had to pick her up by noon because she had an infection in her eye.  I took her to the eye doctor and she is back in school today.  We are regrouping as a family.  We are trying to have each other's back. We are working on organization strategies and study strategies, good nutrition, family time, and peace.  I am trying to work with the school to find the best answers for Lolo and encouraging her in her sports.  We are hanging out with our amazing son more since poor Jonathan has been on the fringe hanging by himself way too much.  Homework time with Lauren is actually my part time job this year.  I am putting all my mom and teacher skills in that one basket.  The biggest thing I realized this week, though, isn't just about Lolo, it is about all of us.

    We praise people that have it all together and functioning well.  But, our world moves too fast and is leaving some people in the dust.  We don't want to know they aren't doing so well.  We want everything to be shiny and go well and be just absolutely amazing.  It is a lot of pressure.  Life on social media and on the news seems like everyone has it together.  But, on a dime, everything changes, cancer happens, accidents happen, people lose their jobs, marriages fail.  Lolo isn't the only kid coping with cancer.  We know a lot of them.  I am not the only parent that can't get it together again after having a sick kid.  Siblings of kids with cancer end up with little attention after illnesses and end up having their own issues.  It is actually normal not to handle all of this with grace.  Things don't really ever go back to normal, or the old normal.  We have quite a few chinks in our armor.  I am finally starting to see the chinks in our armor as who we really are. 

      And......the best week of school ever can still be kind of good even when you start on the 3rd day with an eye infection.  I took a picture of her on her first day.  It is a really bad picture with her eyes closed, the way that most of my pre-digital, bad family pictures are.  I kind of like it.  She is as "cute as a button" and doing the best she can.  I am going to keep that pic to remind myself that I need to remind her that I am a mom with really low expectations, lots of love, and more worried about being her advocate than impressing anyone.  The biggest thing I need to remind her of is how much I adore her and have compassion for her struggles. I also hope I learn to offer that compassion to those around me. 

      Today as we were driving to school it was pouring down raining.  Lauren was worried about being late, even though we had plenty of time.  She isn't so good at learning time, another thing she missed the year she spent in the hospital.  As we were driving up the street, we noticed a man limping and getting completely wet.  I felt bad for him and stopped to ask him if he needed a ride.  He said, "Oh, no, I don't want to get your nice car wet."  "I told him that I could easily dry the seats and to jump in."  I asked him where he was headed and he said he walks to work everyday (quite a ways too).  I went in the opposite direction to take him to work.  He had been working at the hotel where he worked for 21 years as a maintenance man.  He was very appreciative of the ride.  Lauren glared at me the whole time.  When we dropped him off, she raised her voice at me and was mad.  She was worried she was now going to be late.  I asked her if she felt bad for the man and she said, "NO!"  She was worried he could have had a gun.  I explained he wasn't carrying anything.  She was mad because she said I just drive down the road looking for tickets to heaven.  I laughed at that one.  I told her if she was late to explain to Mrs. Grennan that we needed to give a man a ride that was caught in the rain.  I figured a Catholic school should get the bigger picture on that one. I keep thinking of her anxiety and anger today.  She was most worried about being late and being hurt by a stranger.  I realize I took a risk by picking up a stranger.  But, what message do I want her to have?  I told her I didn't think about getting to heaven by helping that man, I just thought about how bad he must feel getting caught in the rain with people driving right on by.  I stopped because I wanted her to see that it is more important not to ignore people's suffering than to be on time.  Regardless, I guess in the whole scheme of things, we are becoming the family I hoped we would be.  Maybe it is going to be the best year.....at least the best year compared to some.

heart
11 people hearted this

Comments

10 Comments

Judi Muller
By Judi Muller
Hope you have the best year ever! You are dealing with a changed life and it's not easy.
Cyndi Patterson-Shipton
By Cynthia Patterson-Shipton
I am so pleased with Lolo's recovery. Your family has been through so much. I too am in remission going on my 5th. year to a cure!
Lolo is so very blessed to have her family and friends helping her through this hurdle.
Soon this will be a memory and life will go on.
All my best to you all.
God Bless and Keep you well,
heart
1 person hearted this
Karla Stocker
By Karla Stocker
Leslee, we really don't know each other but our daughter's danced together at Micki's. We have followed Lauren and I always read your journal. I have to say that today I read a few short sentences from you that opened my eyes. I lost my father to terminal brain cancer this year...we had 10.5 months with him, and in the middle of that I lost my best friend suddenly at age 42 to lung cancer that we didn't even know she had. I was with my dad for his final breath and with my friend within hours of her passing. I kissed them both and said goodbye. I kept moving forward with grace. Strong, not to fall over. Now I feel different. Thinking that the events of this year changed me but then thinking "but I got through it, you're fine." You solidified my thoughts with yours..."It is actually normal not to handle all of this with grace. Things don't really ever go back to normal, or the old normal. We have quite a few chinks in our armor. I am finally starting to see the chinks in our armor as who we really are." Thank you for your words of wisdom. You helped 2 people today...the man on the street and a woman reading your journal. God Bless.
heart
1 person hearted this
Cynthia Teegarden
By Cynthia Teegarden
I applaud your authenticity! Love what you stand for and how you teach life lessons. Thanks for sharing, shaking up our comfort zones and keeping us in the loop! Love you all and God Bless!
heart
1 person hearted this
Julie Lyle
By Julie Lyle
God Bless You for your strength and continual search for truth. Your candor as you share your and Lolo's journey inspires us all in so many ways. I'm praying the year will go more smoothly for you all....
heart
1 person hearted this
Julie Lyle
By Julie Lyle
God Bless You for your strength and continual search for truth. Your candor as you share your and Lolo's journey inspires us all in so many ways. I'm praying the year will go more smoothly for you all....
heart
1 person hearted this
sandra Ekwall
By Love, Your Mom
Thank you LesLee, your writings really make a person look in the mirror and realize that we were not put on this earth to live without others and be alone. We all need help and compassion and understanding of others. We forget while we're on our own treadmill of life and are so busy that we don't stop and call a friend just to say "hi, I was thinking about you!, or I miss seeing you!; how are you doing?....it only takes a few minutes to make someone feel good and not alone. I am here for you as you pass it on to dear sweet Lauren and to others as you always have of to all who are in need.
heart
1 person hearted this
sandra Ekwall
By sandra Ekwall
Your messages are beautifully written and go right to the heart. LesLee, you have been an inspiration to so many and an angel for Lauren in her ongoing fight for a healthy life and struggle to regain her strength and immune system from undergoing over 6 months of twice daily chemotherapy for adult Leukemia. My prayers are with you and Lauren, Phil and Jonathan for your strength and wisdom and your togetherness as a family. May God Bless you and wrap you in his arms.
heart
1 person hearted this
Chris Kostrzewa
By Chris Kostrzewa — last edited
Raising children is all at once the most wonderful yet the most difficult and painful job in the world, because we love them SO much. Kids and moms don't always agree on what love should look like, but we can only do our best and let God do the rest. :) Sending hugs and sunny thoughts your way, friend! I hope it's a great year for your whole troop.
heart
1 person hearted this
Mary Kay Hennings
By Mary Kay Hennings
I wondered how Lolo and all of you were doing. Yes, I remember those years with a young teenage daughter. It's tough. There were times I thought we would never make it...like when, before her senior year at school, she ran away. We found her three weeks in New Orleans. (That story in itself is a miracle.) We got her back to us in Omaha, but it took two years of Christian counseling in our church to get the "old" Jennifer back. Today, she has her masters in elementary ed, and is teaching in Portland, Oregon. I miss having her so far away from home, but I'm proud of the woman she has become. Hang in there. Hugs!
heart
2 people hearted this