Monday, March 13, 2017

Retreat of Renewal - Reflections & Connections

Paige. Nick. Joseph. Stevie. June. Jonathan. Daniela. Seven courageous fighters. Seven lives that ended much too soon. Seven amazing sources of absolute inspiration.

The guys and I were recently invited to join six other families on a weekend retreat hosted by our TCH family. We traveled by bus to Burton, Texas, the home of Camp for All. Built for accessibility, the camp hosts children with special needs and challenging illnesses as well as retreats for families of those kiddos. It sits away from the "busy-ness" of the city and gives participants the chance to connect, reflect, and have some good old-fashioned fun.

Reunions. Spending the better part of three years in and out of the hospital resulted in some very special friendships. The retreat gave us a chance to spend time with a few of our favorite people:
  • Paige's favorite Child Life Specialist, Alyssa. She was amazing with our sweet girl--through good times and bad. Those two hit it off from the very beginning, and their bond only got stronger over the years.
  • Jackson, our incredible social worker, will forever hold a very special place in our hearts. Not only did he help us in many, many ways over the course of Paige's journey, he was integral in planning and coordinating the ceremony for her honorary nursing degree. That day meant more to our family than he will ever know. 
  • Pam and James, chaplains who served some of the TCH floors we called home, were a couple of our go-to people at the hospital to talk and pray with. 
Connections. The seven families in attendance that weekend belong to a 'club' nobody wants to join. Ever. We are missing important pieces of our lives. Of our hearts. We are trying our best to navigate the choppy waters of grief without being taken under by waves crashing around us. We are different, yet we are the same in so many ways. Stories were shared. Bonds were formed. Hearts are trying to heal, even if it's just a little at a time. We truly get each other, and that means everything.

The Great Outdoors. The weather, a little on the chilly side at times, could not have been more beautiful. Not only did we do some fun team-building activities our first day there, we 'visited' with some barnyard animals. Jeremy was not big on petting any of them, but he did enjoy the face-to-face photo ops. He thoroughly enjoyed the horseback riding component of the afternoon--so much so that he managed to get a second ride in before we headed out. The second day started with fishing (using pieces of breakfast sausage, no less), and Jeremy was excited to catch a fish--though he was adamant he would not touch it. That kid cracks me up sometimes--a lot of the time, actually. While Boyce and Jeremy fished, I took a few moments to explore the area around a small chapel just across the pond and snap a few pictures. A scavenger hunt later that morning found us teaming up with our cabin-mates and new friends. Our two families, both pretty competitive in nature, worked together to complete the 2-hour hunt in just 30 minutes. Jeremy was familiar with the grounds since he previously attended the camp held there by the cancer center (patients could be accompanied by one sibling). He really enjoyed leading us to the different spots--"except for all the running!" His words brought a few good laughs, as he readily acknowledges he is not a fan of running. Beautiful weather, plenty of activities, new friends. That outdoor time did us all good.

Facing Fears. I am afraid of heights. As in deathly afraid. Hotel balconies freak me out. Looking down from the windows of our hospital rooms made my stomach do flip-flops. That said, I have never been a fan of thrill rides or other things that make me leave the ground. Jeremy is a bit like me in that respect. Paige, on the other hand, was my adventurous one. From amusement park rides to speed boats to rock walls, the girl was always ready to try something new. Something exciting. She somehow managed to talk me into a short zip line at church camp several years back. Paige and her friend had made their way down while I sat at the top of the tower, in tears and basically paralyzed with fear. My amazing girl took the megaphone from one of the sponsors and called up to me, "You can do this, Mom! I love you!" That was all I needed. She wanted me to do this with her. I said a quick prayer and took the leap. The hug I got from her afterward will stay with me forever.

A night zip was planned for the first evening of the retreat. Night zip. No lights other than those on the climbing wall and small glow lights on the zip lines. Boyce was one of the first ones up. It was his first time at camp, and he was ready to take on any challenge that was presented to him. Jeremy, however, volunteered to hold phones, wallets, and anything else that would keep him on the ground. I was the wild card. Would I, or wouldn't I? After much deliberation (maybe too much) and encouragement from Boyce and my new friends, I decided to head up the wall.

I was slow and deliberate with each step of my climb. Several times I found myself wanting to give up and head back down that wall, but each time I reminded myself how Paige fought for every single step she took. She never gave up. Ever. I had to get to the top of that tower. For myself. For my girl. Just like my previous zip experience, I was hesitant to step off--into complete darkness, no less. Then something happened. I thought about how much Paige would have loved that experience. How I want to do things she would have loved. So off that tower I went, planning to keep my eyes closed the whole time. I'm so glad I changed my mind. The night sky was simply stunning. Not only were several constellations visible, it was like we could see galaxies. Like somehow the Heavens opened up just enough that night to give us all a chance to be a little closer to our angels. It was beautiful, and it was so very worth it.

Leaving Our Mark. Families were given the task of designing rocks for a remembrance area on the grounds of the camp. We received two rocks--one to leave and one to take with us if we chose. I knew exactly what would be on one of the rocks but was unsure what to do with the other. It made me smile when Jeremy asked if he could design the second one. The one we would bring home. He seemed to have something in mind and went straight to work, creating a chevron design--Paige's favorite pattern--in colors she loved. He even included her verse. It turned out beautifully. Family members placed the rocks around a tree during a simple--but truly touching--ceremony.

Tears of Remembrance. So Many. Tears. Breakout sessions where we faced the hard stuff. Walking the grounds of a place our daughter loved. Family and staff sharing stories about those seven incredible lives and how they inspired more people than we may ever know. A nighttime balloon release. A sweet song and video by the siblings. So. Much. Love.

Strength. Faith. Courage. Hope. The seven sweet angels watching over us were the epitome of those words during their time on this earth. Strength of spirit when their bodies were weak. Faith in their God who is bigger than any illness they faced. Courage to take on the scariest of battles. Hope of better days to come. They taught us to cherish every moment. They taught us to never give up. As difficult as this journey is, we keep moving forward. Sharing stories. Continuing legacies. Shining lights so bright not even death can dim them.

Paige. Nick. Joseph. Stevie. June. Jonathan. Daniela. You are deeply loved. You remain in our hearts forever.

Saturday, February 18, 2017

Remembering the Joy, Holding on to Hope

Today I heard my daughter's voice for the first time in almost 4 months. To say it broke me a little just might be the understatement of the year. More on that in just a bit.

Joy. Hope. Faith. Paige personified all of these--and more. No matter what came her way, no matter what roadblock she faced, she did it with grace. With the hope of good things to come. With faith that God would never, ever leave her side. Not a day goes by I don't think of things she said (or might have said). What she would have thought about the various happenings in our lives. How she would react to the way the guys and I are tackling this new way of doing life.

Saturday mornings usually find us at the bowling center for Jeremy's youth league. This wasn't a typical Saturday, however. Today we found ourselves at the 21st Annual Remembrance Breakfast hosted by the Texas Children's Cancer and Hematology Centers. They were honoring the memories of patients who have passed away over the last 3 years. Not all families were present today, but every one of those precious children were recognized. For the record, there were over 200 names listed in the program. Yes, 200. For one cancer center. That is a huge sign things need to change, that funding for research needs to increase so more kiddos have a fighting chance--but that's another soapbox for another time.

Today was a day of sharing memories--heartbreakingly beautiful memories. Doctors, nurses, child life specialists, and other amazing TCH staff members joined families in a packed conference room to honor the incredible legacies left by some of the bravest children to ever set foot on this planet.

Our hosts worked to make the morning truly special for everyone involved. Beautiful music. A slideshow of smiling, joyful children and sweet thoughts about them--from the viewpoints of the wonderful people who served them at TCH. One of today's many tear-filled moments for me was reading those words that described Paige so very well. As tears rolled down my face, her oncologist took my hand and told me to never, ever think that our sweet girl wasn't dearly loved by all who knew her. That resulted in more tears, but I know those people loved my girl. Their words, their actions, their passion for what they do. All done in love for these kiddos.

At one point in the ceremony, families were given the opportunity to share a few words about their loved ones. There was no obligation to do so; it was simply an option to share if we felt led. As I appeared to be experiencing my first anxiety attack since Paige left us, I had no plans to speak today. And then my plans changed. As I listened to a mom telling about her little boy--how he loved Jesus, how he loved to say his favorite Bible verse--I felt a gentle nudge. When she played the audio of her little one reciting that verse, the nudge turned into a mighty shove. All of a sudden, I found myself at the front of the room sharing some of our sweet girl's story. Of how Paige lived out our family verse of Romans 12:12 from diagnosis to relapse to transplant to relapse again--and even in those final days. Of how our family is now doing our part in living out those words. Of how incredibly grateful we are for the love and care she received over the course of this journey.

The ceremony concluded with a compilation of the kids' work through Purple Songs Can Fly, a program offering those served by the Cancer and Hematology Centers the opportunity to write and record original songs. We listened to the sweet voices of little ones singing about butterflies or how food was their favorite thing in the world. We heard a guitar instrumental dedicated to a young patient's mother. We listened to a young man singing about his strong faith. Each of these stirred a variety of emotions for everyone in attendance. And then I heard it. I heard a voice I hadn't heard in almost 4 months. I heard my daughter's song, my daughter's voice:
           "Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12.
            He's the light on my darkest days; 
            no matter where I am I will always sing praise.
            For He is my one and only way,
            And from Him I will never stray."
I made a quick dash for the lobby as tears turned to sobbing. Feeling like I was beginning to hyperventilate, I tried to get my breathing under control. So many thoughts and memories flooded my mind, it was hard to think straight. Thankfully, my incredible husband came to my rescue. Boyce had me focus on him, breathe with him, listen to him. This man talked me out of an almost debilitating panic attack by focusing my thoughts on how Paige sounded in that clip. She wasn't feeling sick. She didn't have any pain. It's as if somehow she knew some kind of change was on the horizon. It's as if she wanted us to know she would be okay. I know that I know that I know my baby girl is more than okay today. Paige is with Jesus--there is nothing more beautiful than that.

Like I said earlier, I often wonder what Paige would think about how we are handling this curveball life has thrown our family. I know how she would do it. I only hope we are doing it in a way that would make her proud. We will see you in a little bit, my love. Until then, we will find the joy in each day. We will hold on to the hope of God's promises. We will keep shining your light.

Sunday, January 29, 2017

Washed in the Water--Finally

Baptism.  An act of obedience that symbolizes the burial and resurrection of Jesus.  A public declaration of a believer's faith and and intended to be the next step taken after accepting Christ as Savior.  I was baptized in junior high.  My husband was baptized shortly after we were married.  Our kiddos have grown up in church and asked Jesus into their hearts several years back--probably 6 or so years ago.  At the time, they weren't ready to 'take the plunge,' so we waited.  A short time later, God led us to what would become our new church home.  Paige and Jeremy wanted to get more accustomed to things, so we waited.  Then the bottom dropped out from under us, and we waited.  And waited.  And waited.

Paige's original leukemia diagnosis stopped us in our tracks.  Everything was placed on hold--school, work, regular day-to-day stuff--everything.  Baptism weekends would come and go, but Paige was never able to participate.  Hospital stays.  Suppressed immune system.  PICC lines.  These things were part of treatments meant to get her well, but they kept her from doing things she wanted to do.

Then came that second relapse.  So many heavy conversations.  So many tears.  Paige was always very sure of God's presence.  She knew He would not leave her.  She knew the strength, fight, and courage she possessed came straight from her Heavenly Father.  When the news came that her disease was progressing, when the choice to discontinue medications became clear, when going home for even a few days promised some time outside the hospital walls--Paige made it very clear she had one thing she wanted to do.  She wanted to be baptized, and she wanted Jeremy to be part of it.

Our amazing church made it happen.  Jeremy was able to experience baptism by immersion, which is what we'd planned for both kiddos.  Paige has always done things her own special way--and this was no exception.  Granted, we were given the task of figuring out the PICC line and leg braces, so it wasn't like our sweet girl just refused to get in the water.  On top of that, she was feeling particularly wiped out that day.  We put our heads together and came up with a plan that would be more than a sprinkle but less than total immersion.   Paige described it as Pastor Tim scooping up water in his hands and letting it wash over her head with a big "woosh" sound.

That day will forever be one of my favorite days.  My kiddos were baptized.  Together.  My heart was pretty full that day.

One Lord, one faith, one baptism.   Ephesians 4:5

* Here's a quick glimpse of that beautiful, special, amazingly wonderful day. 💖




Wednesday, January 18, 2017

Sense-less

I am struggling. Every. Single. Day. Struggling to fight back the tears. Struggling to remember to breathe when an expected reminder of Paige knocks the wind out of me. Sometimes I can simply catch my breath and carry on about my day. Other times I feel overtaken by a tsunami of grief, and I just lose it. It's been almost three months since our sweet girl left us, and it seems the further out we get, the harder all of this is.

I am trying.  Every. Single. Day. Trying to hang on to some semblance of 'normalcy'--whatever that is these days. Trying to wrap my head around the fact that Paige is no longer here. Trying to make sense of something that makes no sense to me at all.

No matter how hard I try, I know it's not mine to understand. I know Paige is in a place so much more amazing than this broken world. She is healed, and she is happy. My head knows this. My heart knows this. Yet it doesn't keep me from missing my girl.  It doesn't protect me from this intense, heart-wrenching ache that feels like it will never go away.

Grief does some crazy things. It can make time fly. It can make it drag on and on. It can make you numb to your surroundings. It can heighten every sense you have. Let me tell you, every one of my senses misses that girl of mine. Every. Single. One.

Seeing her beautiful smile. Those light freckles dotting the bridge of her nose. The way she rolled her eyes at her brother--or her dad--or me. Her excitement about her car--or the latest Captain America or Thor movies. Seeing her here with me.

Hearing her voice. Singing at the top of her lungs to her 'jams.' Yelling at (or not-so-gently redirecting) Jeremy for a whole host of reasons. Laughing at her brother's silliness or her dad's jokes--never mine. Saying, "I love you." Hearing her here, talking with me.

Touching those curly ringlets on her head. Locking her fingers with mine. Feeling her head on my shoulder. Having her here and hugging her so tightly I'd never want to let go.

Smelling her favorite shampoo.  The scented stuffed animals in her room that gave off the slightest hint of vanilla.

Tasting foods we enjoyed together. Bread pudding from her favorite place ever. The chocolate chocolate chip pancakes she ate almost every day for four weeks--with whipped cream, of course.

I am struggling, but I am doing my best to press on through this unbelievable, almost unbearable season. My heart is broken, but I am determined to find the joy in each day. Paige was great about that--finding a reason to smile no matter the circumstance. I need to take a cue from my girl. I may not be able to reach out and hug her anymore, but she's here with me--and always will be.

He heals the brokenhearted and binds up their wounds.   Psalm 147:3

Tuesday, January 10, 2017

Past, Present, and Future

While technology has played a significant role in my career as an educator, there was a time I was a pretty decent Language Arts teacher.  I loved teaching writing, even with the state test looming on the horizon.  Even with the resistance of struggling, hesitant writers.  There's something about putting pen to paper (or fingers to keyboard) and telling a story, sharing a piece of your heart.

It seemed like many of my students struggled with verb tense--that whole past, present, and future thing.  They would start writing about something that had happened and shift tenses midway through the essay.  Sometimes it worked, but other times it simply muddled what could be a fantastic story.  Today marks three years since Paige's original diagnosis.  Three years.  Cancer cut short a phenomenal life.  Lately I'm struggling with verb tense myself.  Past.  Present.  Future.  What do these look like on this new road we are traveling?

Was.  It's a simple 3-letter word.  We use it all the time to tell about events that have previously taken place.  Things that have passed.  Things in the past.  I was out of groceries, so I went to the store.  He was the loudest kid in the class.  Never in a million years did I think I would be using that word to describe my daughter.  As of October 24, 2016, everything about her story, her spunk--her amazing life in general--became linked to that word.  She was a beautiful soul with a strong faith in God.  She was incredibly smart and determined to help kids in situations like hers.  She was simply amazing.

Is.  Another simple word used to talk about the present.  Someone's current situation.  She is watching television.  The moon is bright tonight.  My situation seems to change at the drop of a hat these days.  This momma's heart is broken.  She knows her sweet girl is with her Savior, but she is struggling on this day.  Enough said.

Will.  Of these 'simple' verbs, I think this one is the strongest.  The most determined.  It shares hopes and sets goals.  It tells of things to come.  God will heal our hearts.  We will continue to shine Paige's light and build her legacy.  Our family will be reunited one day.  What a glorious moment that will be!

These seemingly simple verbs are stronger than they appear.  I think I'm kind of the opposite in that I appear stronger than my heart feels--but that really doesn't matter in the grand scheme of things.  What matters is I know God is my strength and my hope.  He is guiding my steps, leading the way.  I always try to write what is on my heart, but I'm so incredibly thankful God is in my heart.

Sunday, January 1, 2017

A New Chapter

January 1.  The beginning of a new year.  New hopes.  New goals.  It's also the beginning of a new chapter for our family.  While many lament the end of the holiday season, for us it couldn't come fast enough.  We forged ahead with a few traditions and flat-out skipped others.  There was simply no escaping the pain felt by Paige's absence.  No way to stay busy enough.  No way to sidestep the fact that a huge piece of this momma's heart is missing.

That's not to say we are in 'sad mode' all day, every day.  As we move forward, we try to work around those feelings of loss--make room for them, so to speak--rather than be consumed by them.  It's a matter of finding some kind of balance in this new, off-kilter world of ours.  

I know God is ultimately the author of our stories.  Each and every one.  He knows the beginning, the end, and everything in between.  Jeremiah 29:11 reminds us of the plans He has for us.  Plans that include hope and a future.  Each day we are given breath, we become co-authors to a certain extent.  The way we do life.  The way we follow His lead.  This is how the middle chapters of our stories are written.

2016 started out pretty great for our family.  Then it got rough.  Really rough.  Like punch you in the gut, bring you to your knees rough.  It's definitely time for a new chapter to begin.  For hope--and maybe even a little joy--to find its way back into our family.  Here's a look at how we're getting started:

* The room our sweet girl occupied for 15 years now belongs to her brother.  Jeremy, also known as my giant man-child, has grown inches in a matter of weeks.  Fresh paint, new furniture, and wall decor displaying his varied interests (bowling, Texans, Camaros, etc.) have transformed the room into a space Jeremy can now call his own.   

* Boyce returns to work next week after an almost 6-month leave of absence.  He has been with us from the moment we learned of Paige's relapse in July, and we wouldn't have had it any other way.  It was important to have him here those last months we had with Paige and just as important to have some much-needed time together to begin the healing process.  

* I begin a new adventure tomorrow morning.  I was asked to return to my former school district for the remainder of the school year.  It's a junior high position that will find me teaching robotics and technology education classes.  After many conversations, a visit to the school, and a whole lot of prayer, I agreed to give it a go.  I decided I'll never know if I'm ready to return to work unless I take a leap--so tomorrow morning around 7:30, this lady is leaping.  Add on teaching a college class as an adjunct instructor, and I'm sure to stay busy.  The crazy thing is, I have seen little hints of Paige in the way all of this came about.  Could it be that my girl is gently nudging--really, kind of shoving--me out into the world again?  It really just might. 

Our new chapter includes our sweet girl as well.  Paige's time on Earth may have come to an end, but her story has not.  There is still so much to tell, so much we have yet to share.  What she faced over the course of three battles.  What she was able to overcome.  This new chapter will find us continuing to shine Paige's light, building on her legacy, and doing everything in our power to share the story of a girl whose faith could move mountains.  I'd say the Lejeunes are ready and willing to learn how to shine in 2017.

...let your light shine before others, so that they may see your good works and give glory to your Father who is in Heaven.   Matthew 5:16

Saturday, December 10, 2016

December's Double Whammy

December, aka "The Most Wonderful Time of the Year."  Not for our family.  Not this year.  This month has taken on the feeling of a one-two punch.  A double whammy.  She should be here.  Paige should be here.  Healthy.  Happy.  Never having to take on cancer once, let alone two and three times.  Don't get me wrong--I know she is healthy and happy now.  I know she is going to have the most amazing Christmas in Heaven.  I know I will see her again one day.   Still...she should be here.     

Whammy #1,  "The Obvious One"
She should be here.  Paige should be here helping me bake holiday goodies and watching our favorite Christmas movies.  Doing things we've come to know as traditions for the Lejeune Four.  She should be making sure her accident-prone mom doesn't drop the candle at Christmas Eve candlelight services.  Dragging me out of bed on Christmas morning.  Eating pigs-in-a-blanket for breakfast.  Opening gifts and then anxiously waiting for us to open gifts she picked out just for us.  Going to Grandma's house for lunch and then laughing as Dad, Grandpa, and Uncle Craig doze off watching television.  She should be here.

Whammy #2, "The (Even More) Heartbreaking One" 
Paige was admitted to the Bone Marrow Unit on December 10th last year.  One year ago today.  It was the beginning of 9 days of "conditioning"--chemo, radiation, and more chemo--that would prepare her body for transplant.  Transplant, where new 'baby marrow' cells would take up residence in Paige's bones.  New cells that would work to build a brand new immune system.  New cells that were supposed to save her life.

For three months prior to that admission, Paige's body endured extremely hard cycles of chemotherapy.  It beat her up like I'd never seen--but in true Paige form, she pushed through every struggle, every setback, confident she would come out okay on the other side of it all.  December 18th was the day.  Paige's new birthday, as it's called in the transplant world.  She was so excited at the prospect of having 2 birthdays each year and had even thought about doing a silly cake smash for the 1st BMT birthday.  That girl--always planning ahead.  Always ready to move forward.

Being hospitalized during the holidays is not the ideal situation, but we were truly blessed by some wonderful individuals and organizations who wanted to give our family the best Christmas possible.  As you can imagine, there were several occasions I had to ask Paige for a wish list.  She was always reluctant to ask for much and told us more than one time, "I'm just happy to be here."  The girl could have listed just about anything and everything, but she chose not to.  She was simply thankful for hope.  Thankful for another chance at a healthy life.  Doesn't that say it all?  She should be here.

***************

Our sweet girl suffers no more.  Forever healed, she is likely looking down at me thinking I need a swift kick in the pants for being sad.  But I am sad.  Some days I navigate the waters of grief pretty well, while other days find me struggling to get my head above water.  I miss her terribly.  My heart aches over what this world lost in that girl.  Over what I lost in that girl.  

How thankful I am for God's promise to be with us always.  No matter what, He is here.  He gives us the strength to keep putting one foot in front of the other.  One step at a time, one day at a time.  We will make it.  He will make sure of it.  God is good like that.

The Lord is near to the brokenhearted and saves the crushed in spirit.   
Psalm 34:18