Friday, October 6, 2017

Pancakes, Beads, and Precious Time

October is a rough, rough month for our family. Once upon a time, it simply meant Jeremy would spend the better part of the month telling us what he wanted for his birthday, which is on the 30th. These days it's a little different--make that a lot different. October is the last month we had our sweet girl on this earth. October 2016 changed us forever. It has now been almost one year since Paige left us, yet sometimes it feels like yesterday. Today I find myself thinking about those last days we had with her. Today I find myself thinking about pancakes, beads, and precious, precious time.

Pancakes. As Paige's health was rapidly declining, so was her appetite. There were really no foods that sounded good to her--except pancakes. Chocolate chocolate chip pancakes, to be exact. Chocolate pancakes loaded with chocolate chips. And whipped cream. So much whipped cream--and I'm not talking about the little dollop they put on the stack at the restaurant. I'm talking a can of Reddi-Wip. Paige was very particular about it--it had to be the "real stuff," not the "low fat junk Mom likes." Each pancake had to be cut into bites that would then be 'decorated' with their own helpings of whipped cream. I'm not sure how many cans we went through, but I do know it became a 'thing' for us to make trips back and forth to the family room refrigerator for Paige's Reddi-Wip.  Even on those yucky days, that sass was still front and center--but that was fine with me. I loved seeing her spunk re-emerge, even though the times were getting fewer and farther between. I loved seeing her cover those pancake bites with whipped cream and thoroughly enjoy food she actually felt like eating. I loved doing what we could to make her happy. Whatever that girl wanted, we would find a way to make it happen. It just so happened that those pancakes hit the spot every single time--24 of those last 28 days we were there. That's a lot of pancakes.

Beads. Beads of Courage is a national arts-in-medicine program that helps children who are coping with a serious illness tell their stories and have an amazing visual representation of those journeys.  TCH was just beginning the Beads of Courage program last year after Paige's last relapse. In fact, they were in the process of training staff and hadn't yet received all of the different types of beads they planned on giving out. Every bead is part of a child's story. Every. Single. One. There's one for every dose of chemotherapy, whether by pill or infusion. One for every poke, including IVs, blood draws, and accessing the port. One for every overnight hospital stay, every biopsy, every transfusion, every scan--everything. There are even special "EnCOURAGEment" beads for bigger milestones as well as special accomplishments related to the journey. It's truly an amazing program.

We were surprised and honored when some very special people approached us about awarding Paige with all the beads she had earned up to that point. The problem was, I hadn't kept up with all of that--not in one specific place, anyway. There was so much the girl had experienced through 2 1/2 years of diagnosis, treatment, relapse, transplant, and yet another relapse. Just trying to estimate the number of times she'd had some form of chemo was in itself a daunting task (almost 600), and we wanted to make sure Paige got every single bead she'd earned. Boyce and I spent the better part of a weekend going through all of the treatment 'road maps' and calendars and clinic paperwork we had in our possession. We knew there were things we'd overlooked and were beyond grateful when one of our incredible inpatient doctors spent a Sunday afternoon combing through anything and everything she could to help complete our counts of Paige's many, many courageous moments over the last few years. The result: over 70 feet of beads--beads representing hope, perseverance, and bravery in the face of unfathomable adversity. Close to (if not slightly more than) 2,000 beads telling the story of one amazing young lady. 2,000 beads. That's a lot of beads--and a lot of courage.

Precious Time. From that final hospital admission on September 26th, we knew time with Paige was getting short. Much too short. Some days were good. There was laughter and sass and endless episodes of Tim Allen shows. Some days were really bad. On those days all we could do was hold that girl close and tell her how very much we loved her. I would have done that for the rest of my days if it meant Paige would one day regain her health. This was my baby girl, after all. A giant piece of my heart and my world.  Every day we were given with that girl was precious. Every day. Every hour. Every moment. Paige Madison Lejeune blessed my life for 16 years, 2 months, and 13 days. I will always be grateful for every precious second I had with the bravest person I have ever known. 

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Paige taught me more through her cancer battles than she ever fully realized. I think she did the same for a whole lot of people. What a special, special young lady. I am forever proud to be her mom.

Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12

Friday, September 29, 2017

Weathering the Storms

*Foreword: This post is just a bit different, as I go back and forth between the recent storm that hit our area and the storm of childhood cancer that hit our family. Both call for strength. Both call for help from others. Both call for continued hope. 

Just over a month ago, the Texas Gulf Coast was pounded by Hurricane Harvey. While our area was spared some of the strong winds, we received rain. And more rain. And still more rain. What began as a 'typical' storm threat quickly became a major flooding event as we found ourselves on the 'dirty' side of Harvey.

As longtime residents of Southeast Texas, we've seen our share of storms. We know to prepare. We know to 'hunker down' or evacuate if needed. We pay attention to forecasts and usually make it through unscathed.

Harvey was different. It rained. And it rained. And it rained some more. We watched as water covered the street and then the sidewalk before making its way up the yard. In the 16 years we've lived in this house, I don't know that water has ever made it past the sidewalk. For several hours it looked as though we might even end up with some in the house. A panic came across me like nothing I've felt in a long time.

You see, once upon a time, I wasn't super concerned with our 'stuff' when storms came our way. I always felt like though it would be hard, things could be replaced. It's people that are irreplaceable. As long as our family was together, that's what mattered. We evacuated (along with just about everyone else in our area) when Hurricane Rita was a threat. We 'hunkered down' at my mom's through Hurricane Ike, again leaving our house. I had my husband. I had my kids. We were good.

Then Paige left us, and I discovered there really was stuff that could never be replaced. Things she made. Things of hers. As the water got closer to the house and we realized it really could end up coming in, I frantically begin putting as many things in bins as I could. I'd already packed a couple of small storage bins when we cleaned out her room in November--but there were many things I hadn't yet had the energy to go through. Things that needed more time before revisiting. Thanks to Harvey, I had to deal with those things right then and there. Jewelry. T-shirt quilts and pillows. A plaster mold of her hand they made for us the night she passed away. And I was a mess. I don't know if it was PTSD or what--but that added to grief plus the stress of the unknowns with the storm--and it was a full-blown meltdown for this momma. I think realizing there were some things I really can't replace just served as another reminder my baby isn't here.

I spent a lot of time crying over the course of the days we were stranded inside. A whole lot. We are in the middle of a very tough couple of months--and knowing I might lose all I physically had left of Paige broke me. It simply broke me. When I thought I couldn't break any more--that my heart had already shattered as much as it could--I broke. Now, I'm just praying that God will start putting some of those pieces back together. I know He will. He's amazing like that. How else can I explain the fact that I can get up every day and be a (mostly) functioning member of society? But God. He is with us through the calm and through the storm. Every kind of storm.

Our first cancer storm--known as T-Cell Acute Lymphoblastic Leukemia--came ashore January 2014. We saw it as a challenge--but one we could get through as long as we were together. The second one hit in September 2015, and it was stronger than the first one. It would take much more to weather it, but again--we had faith we would make it to the other side. Together. Then came that third and final storm in July 2016. The one that hit with such a vengeance that recovery efforts for this one would be for three of us, not four. And it was devastating.

Harvey did his best to cause widespread devastation--and it was heartbreaking. We stayed safe and dry. For that we are so very thankful. We very well could have found ourselves losing everything we had. My heart truly goes out to everyone who was affected by this unprecedented storm. To those who suffered great losses, I am so very sorry. I will continue to pray for God to give you strength and to equip you with everything you need as you take this detour you never saw coming. It will be difficult, but He will provide. He will sustain you.

I can only guess that sounds cliché coming from someone whose home was spared. The thing is--our family has also been traveling a road we never saw coming. A path very different from anything we ever imagined. We didn't lose our home, but we lost a giant part of our home and a huge piece of our hearts when Paige went to be with Jesus. The days can be long and difficult. They can test us in ways we never thought possible. But no matter how tough those days can be, we always make it through. God has been with us the entire journey. He provides calm in the storms. He guides our steps. He gives us hope. He helps us weather the storms.

Friday, August 11, 2017

Missing the Birthday Girl

My Sweet, Sweet Paige...

Seventeen years ago today you made me a mom for the first time. You brought more joy, love, and spunk into our family than we ever thought possible. Your independent nature challenged us. Your courage and determination strengthened us. Your unabiding faith inspired us.

Today marks the first birthday you'll spend in Heaven. The first birthday I won't kiss your forehead. The first birthday I won't hear your laughter. The first birthday I won't marvel at that incredible, infectious smile in person. I miss you, girlie. So. Very. Much.

As we navigate this first birthday without you here, I will remind myself (all day if need be) that you are now healed and whole. You are in Paradise--in the presence of Jesus. Enjoy that Heavenly celebration, my love. I'll see you in a little bit.


Sunday, July 30, 2017

A Rough (and As of Yet Unnamed) Season

We are smack-dab in the middle of a southeast Texas summer. That means heat and humidity so oppressive it's difficult to be outside for long periods of time. It's also hurricane season, which is basically half a year of keeping our eyes on the Gulf of Mexico. We are encouraged to stock up on necessities and to have plans in place when strong storms head our way. Here's the kicker: We know they are coming, and we can do something about it. We can escape sweltering heat by seeking out air-conditioned bliss. Hurricanes are either 'ridden out' in our homes or a reason to hit the road for safer territory. We know these things are coming and can have plans for the minor (and sometimes not-so-minor) inconveniences they cause. This is not the case for the season our family is entering. The next few months have the makings of a very rough time ahead as we muddle our way through memories of the last few months we spent with our sweet Paige.

July. The month of her last relapse. Boyce and I have different triggers, but we fight these incredibly bad moments where we relive the devastating news we never dreamed we would hear. August. We reached Paige's 16th birthday. It's a milestone for all teens, but for our girl--it was so much more. It would be the last birthday she would celebrate here on Earth. September and October. Paige put on such a brave front, but the disease was progressing and zapping her energy. Quality time became more important than ever before. We played games and watched movies--and even got her out of the house on occasion. It was about making the most of every minute we had together. It was about finding joy and hope in the midst of the storm that was raging all around us.

She's been gone nine months. Nine months. Since Paige left, it feels like I'm living in a very strange time warp. I'm here in the day-to-day 'busy-ness' of life, taking care of Jeremy and Boyce and everything else I need to do. However, when I'm in my 'Paige Zone' (which happens quite often), it's like time has slowed to a crawl--or has stopped altogether. What's crazy to me is how those versions of myself--the busy, present one and the always-in-a-fog one--overlap and somehow occur simultaneously. What I do know is that my heart still seems to break a little more every day without that girl here.

It's been a difficult, heart-wrenching nine months reaching the firsts without Paige here. The first Thanksgiving. The first Christmas. Mother's Day. Father's Day. As each one neared, our hearts seemed to get heavier and heavier.  Paige always made special days even more special--it might have been through a unique or silly gift, a handmade card, or even a day of baking her favorite treats. Had it not been for Jeremy, I may have spent many of the firsts simply summoning the strength to get out of bed. Of course, that wouldn't have been fair to him--and it certainly would not have allowed God to keep doing the work He is doing in our lives. Each and every time we hit one of those terrible patches of the road, God gives us the strength we need to keep going. Every. Single. Time.

If you've followed our journey for any length of time, you know we are firm believers in the power of prayer and the sovereignty of Almighty God. If you are so led, please pray for our family as we continue to move forward one step at a time. Not a day goes by that one of us isn't experiencing some kind of struggle with losing Paige. As we head into this rough season, I cling to the hope of God's promises. I know He has a purpose for my time here, just as there was a purpose for the time He gave my sweet girl. Through the struggles and challenges of life, He is always good. He is always faithful. Always.

Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness.   Lamentations 3:22-23

Friday, June 23, 2017

Finding Our Footing

Tomorrow marks eight months since Paige took her final breaths on this earth and went to be with Jesus. Eight months since I held her hand and kissed her face. Eight months without a huge piece of my heart. I still can't fathom this new way of doing life around here. It doesn't make sense. It hurts like crazy--for our whole family. Much of the time it takes everything I have to just stay upright and (try to) keep moving forward.

I've long known the importance of taking things one day, one moment at a time--though it seems I was much better at it when Paige was here. She kept me on my toes with all her crazy reactions and issues, but at the same time she grounded me. When it gets really tough, I remind myself how truly blessed I was to have had that incredible young lady with me for 16 years. God had a purpose for her time here, and He has a purpose for mine--so I've got to keep going. I fully trust Him to guide each and every one of my steps. Make no mistake, though--this unimaginable journey has changed our family forever. It hasn't gotten easier, and I'm not sure it ever really will. It isn't anything we can just 'get over' or 'leave behind.' From what I can tell so far, Paige's absence is something we will learn to live with as we go on living. I miss my daughter, and I will miss her every single day until I see her again. It's unbelievably difficult to find my footing these days--but I'm working on it. We all are.

The grief process is unpredictable, to say the least. There will be a few mostly-good days, and then--WHAM. It hits me. Or Boyce. Or Jeremy. On any given day, at least one of us is really, really missing Paige, and the others do what we can to lift the spirits of or simply just support the one hurting. It's a rough road to travel. Some days we can walk it pretty steadily. Other days it feels like one stumbling block after another. Today has been a pretty good day, so I thought I'd share what the Lejeunes are up to as of late.

Jeremy. Where do I start? This young man is pretty incredible, to say the least. Despite dealing with the devastating loss of his sister (whom he adored, by the way), Jeremy not only kept his grades up--he ended the school year qualifying for National Junior Honor Society. The outpouring of love and support from teachers, friends, and his whole school in general helped him stay connected and focused on even the toughest of days.

Jeremy has also rediscovered how to have fun hanging out with friends. From short get-togethers to weekend sleepovers, it makes my heart happy to hear that boy laughing again. He has already spent one week at summer camp and has two more coming up. These opportunities give him a time for fellowship with new friends as well as a chance to grow in his relationship with Jesus.

The rocky road of grief hits Jeremy the hardest when he returns home after he's been with friends a few days. It's like a jolt back to our hard new reality as he once again adjusts to the fact he's now the only kiddo under our roof. Several times he has quietly spent a day or two in very close proximity to me, and that's okay. Whatever I can do to get him back on the road moving forward, I'll do. We have stressed to Jeremy we want him to have a happy life. That moving ahead doesn't mean we love his sister any less. It just means we are working to continue on the path God has laid out for us.

Boyce. This man is my rock here on Earth. He has said before how strong he thinks I am, but I don't think he realizes how incredibly strong he is. Talking me out of sudden, overwhelming panic attacks. Giving me a shoulder to cry (actually, sob) on. Being the main breadwinner and encouraging me in my part-time role at church. Continuing to work with Jeremy on his bowling skills. Teaching our son what a man does to take care of his family. These are but a few of the ways I've seen my husband demonstrate the strength God is giving him as we travel this road.

Does Boyce have bad days? Absolutely. The waves of grief hit him just as hard as they do me. Paige was his baby girl, and it's extremely difficult letting go of the hopes and dreams he once had for her. All kinds of things bring on those tough moments. It might be a show on television we all watched together. It could be a song on the radio that brings certain memories to mind. It could be a glance at her picture on the wall. It could be anything, and it could be nothing at all. No matter the trigger, it still hurts--yet he pushes through. For Jeremy. For me. For himself. Boyce knows God is with us in the midst of all this pain, so he does his part in moving our family forward the best way he knows how.

Amy. Then there's me. Some days I think I'm getting used to the terrain of this road. Other days, I come very close to tumbling down a rocky incline. I ache for Paige. I long for my girl.  Her absence is deafening sometimes. Yes, she's healed. Yes, she's received the gift of eternal life. I am thankful for that. I rejoice in it. I know I will be reunited with her when Jesus calls me home. For the time being, it would be oh-so-amazing to get through an entire day without feeling like I've been punched in the gut.

Song lyrics really, really get me. A song about God's will had me crouched down on the floor. Another one mentioned holding the hand of a loved one as she was headed home--whew. Tears, tears, and more tears. Words are powerful enough, but set some of them to music and I'm just done. Nights haven't gotten easier for me either. I have to keep the television on with low sound. The combination of light and noise makes it harder for my mind to keep going back to the night Paige left. Grief doesn't go away when the sun goes down. If anything, it becomes more present.

Daytime is better. I get outside when I can and just take in the beauty of God's creation. I've also ventured back into the workforce--on a part-time basis, but it's a start. About five months ago, I began serving alongside the amazing ladies on the Pastoral Care team at our church. We pray together, laugh together, and even cry together. They are an incredible support system and have held my hand through many hard days. I have learned so much from them, and I can only hope they are able to learn something from me. I love these ladies dearly and am so thankful for each one of them.

Remembering Paige. Knowing Paige is still loved and remembered gets me through the toughest days.  Her memory was honored at a benefit her school put on for other children fighting cancer. Her fighting spirit was celebrated by a friend as he completed a grueling run across Italy. Our sweet girl's inner and outer beauty was recognized by friends who had a star named after her. Our church held a blood drive honoring her memory that resulted in enough blood donations to help 90 people--what a blessing! A research grant in Paige's name will soon be a reality thanks to the fundraising efforts of a fellow cancer mom and her team. These things make my heart so incredibly happy and serve as a reminder that Paige is still making a difference. That I can make a difference and continue to shine her light. And I will. That you can count on.

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If I've learned anything, it's that it's okay to stumble as I navigate this new road. The path may be rocky--but under that shaky top layer is a strong foundation. God is here to guide my steps, and His mercies are new every single day. I may stumble, but He will be there to pick me back up. He will never let go.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.   Isaiah 41:10

Sunday, April 23, 2017

Heartbreak, Healing, and a Whole Lot of Hope

Warning: Real, raw emotion ahead. Proceed with caution (and maybe a tissue or two).

Tomorrow marks half a year since Paige left us to be with Jesus. Half a year. 6 months since I last held my baby girl's hand. 26 weeks since I kissed her forehead. 182 days since I stroked her head and prayed over her. 4,368 hours since I watched my daughter take her last breaths on this earth. The rest of the world goes on as usual, and I'm left trying to convince my mind and my heart that this isn't just a bad dream. That this really happened. I'm wrestling with feelings of heartbreak. I'm searching for healing. I'm holding on to every bit of hope I can find.

Heartbreak. That feeling of longing for my daughter is with me every single day. I find myself thinking about how Paige might have reacted to something one of us said--likely with her trademark eye roll. I can almost hear her in the back seat singing--often very silly--as she usually did on car rides. I sit in her 'spot' on the sofa and am transported back to the many times we were right there. Together. Joined at the hip, as she said so often. I long to see her driving her dream car. To see her getting ready for her last year of high school. I just long to see her--period.

There is an ache words can't fully explain. An ache only truly understood by those who have lost a child and found themselves in this place--a place no one wants to be. I wipe away tears as I look at pictures of my girl before cancer attacked her body not once, not twice--but three times. She was happy. She was healthy. She was here. I look at pictures of Paige over the course of her battles with leukemia and wipe away more tears. Long hair to no hair to amazing ringlets of curls.
A body fighting cancer and the excruciating toll its treatment and effects took on her. Still, she found joy. Still, she had faith. Still, she was here. This new leg of the journey without Paige is so very difficult. Trying to figure out how to move forward as three--when in our hearts there are still four--is hard to fathom. Still, we look for the joy just like Paige did. Still, we stand firm on faith just like she did. We so badly want that girl here--sass and all, but these days we are working to trust that God's purpose for her life was fulfilled in the 16 years He gave us with her. It's not easy to do, but we were never promised life would be without trouble. We are, however, promised peace in Jesus. In fact, He tells us in John 16:33, "...in Me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." Jesus said it. I believe it.

By no means do I fully comprehend any part of this new way of life. My world shattered into a million pieces when Paige left us, and I battle that brokenness on a daily basis. My heart is broken without that girl here. Our family is broken, always missing the one piece of amazingness that was Paige. We try to repair the cracks, but we will never be fully restored on this earth. In the meantime, we hold things together as best we can and look for anything that might resemble healing.

Healing. There are days that are mostly good. There are days that are most definitely not good. And that's okay. If I've learned anything along the way, it's that there is absolutely, positively, no set timeline for 'getting over' a loss like this. I had to tell my daughter I'd see her "in a little bit" and watched her cross over into Heaven. I carried that girl inside of me for nine months. She clasped my fingers as she took her first steps. Never in my wildest dreams did I imagine my baby would have to take on the childhood cancer monster. Not only did she take it on, she fought it with unmatched courage and determination. She fought to the finish. Moving forward--not moving on--after something like that is done not one day a time, not even an hour at a time. It is quite literally one moment at a time.

Unlike 'normal' illnesses that can be resolved with a prescription from the doctor, this type of healing calls for a different approach. A different recipe, if you will, that involves everyone. This type of healing requires prayer, grace, and patience. It relies on others reaching out--even if just to check in. It is the willingness to listen to stories about our sweet girl and an understanding that our lives are really and truly forever changed.

We talked with Paige many times about making sure good things would come out of her struggles. Boyce and I are committed to finding ways to keep our beautiful girl's light shining. We want to help make a difference. For her legacy. For the kiddos still fighting. For those yet to fight. I truly believe it will be an important part of the healing process for our family. Recently I was asked to speak at a golf tournament fundraiser for The Leukemia & Lymphoma Society. It was my first planned speaking event since Paige left us, and I had spent the week before racking my brain for the right words. I may have been close to making myself crazy over the whole thing when I came to my senses and realized it wasn't my brain that needed to control the speaking--it was my heart. From there, everything fell into place. Not only did I talk about her cancer battles and the need to raise money for research, I was able to give the audience a glimpse at the fight, spirit, and sassiness that was my daughter. Without breaking down. Without worrying I'd leave something out. I spoke straight from my heart, and I hope everyone there that day left a little more inspired to make a difference. I know I did.

I cannot count the number of times Boyce and I have been told how strong we are. While that is a very sweet and appreciated sentiment, I can assure you we are not strong. I am not strong--not on my own, that's for certain. Any semblance of strength I have is a total God thing. He gives me strength when it feels like my knees are buckling and I can't take one more step down this path. He gives me peace when grief tries to spiral into overwhelming anxiety and chaos. He hears my prayers every night as I ask Him to heal my heart. It's a long road--but God isn't going anywhere. He's got this healing thing in His mighty hands. I just have to find a way to be patient with the process.

A Whole Lot of Hope. It seems only fitting I wrap this up with Romans 12:12, "Be joyful in hope, patient in affliction, faithful in prayer." Hope is all around. It's in the promise of meeting my Savior someday. It's in the thought of being reunited with my sweet girl (and my Nanny and Papaw) in Heaven. It's in a beautiful sunrise or sunset. It's in my son's laugh or a hand squeeze from my husband. It's in continuing to seek out the joy in each and every day we are given on this earth. My friends, hope is very real because of Jesus' saving grace. For that, I am incredibly grateful.

"We have this hope as an anchor for the soul, firm and secure..."  Hebrews 6:19

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