Journey to Her Heavenly Home

I shared in my last post that October is a rough month for our family. Now that I think about it, rough is actually putting it mildly. October is difficult. It is heartbreaking. It is absolutely gut-wrenching. As I write this, we are just days away from the one-year mark of Paige going to be with Jesus. One year. 12 months. 365 days. 8,760 hours. Over 500,000 minutes. Over 31 million seconds. And I have missed, mourned, and longed for that girl with everything I have every single one of those seconds.

Boyce and I have heard on more than one occasion that it doesn't seem like it's been that long. Trust me--it's been that long. To our hurting family, it feels like it's been a whole lot longer. I get it. People around us have moved on. Life must go on, yet we find ourselves struggling as we try to move forward without feeling like we are leaving a precious piece of ourselves behind. Figuring out this still-new way of doing life without Paige is a very slow, painful process.

As much as I've tried to avoid it--by staying busy and go-go-going nonstop--October just won't let us be. Memories of our last month with Paige overwhelm me day and night. Just last week I awoke from a dream sobbing--full-on sobbing--because in that dream I relived every second of Paige leaving us. Every second.

Over the last few years, I've shared how our family's faith and trust in God has carried us through good times and bad. That has not changed. He is always good. He is always faithful. We prayed for Paige's healing over and over and over again. She received it--not in the way we were hoping, but she received it nonetheless. A while back our pastor talked about three kinds of healing: immediate, gradual, and ultimate. While my head and my prayers always steered toward gradual, my baby girl received her ultimate healing when she went to be with Jesus. She is free from the shackles of cancer. She is whole. She is rejoicing.

I've talked a few times about those last days with Paige--but I've never put them in writing. Until now. It's time. It's time to share how I know that I know that I know Jesus came for my beautiful girl in the wee hours of October 24, 2016.

Our last hospital stay was a true roller coaster ride. There were at least 3 times from admission in late September until the day our girl journeyed home that we were told to 'be ready.' That the leukemia was starting to gallop out of control. And it showed. Paige slept more than she was awake, wanting nothing more than her mom and dad right where she could see them when she did open her eyes. The pain--oh, the pain. It hit every part of her body with such force that her usual regimen for pain management wouldn't touch it. There would be a few rough, scary days--and then my girl would perk up, ready for pancakes and maybe a visit or two from family. Then down she would go again. The back and forth was so hard on her. Hard on her parents. Hard on everyone who loved her.

There were tears. So many tears. Tears in the eyes of doctors and nurses as they delivered more and more bad news while doing everything in their power to keep Paige comfortable. Tears in the eyes of a grandmother whose heart was breaking seeing her granddaughter suffer. Tears in the eyes of a brother who said over and over that if Paige left us on his birthday, he would never celebrate it again. Tears in the eyes of a father who realized the only thing he could do--the most important thing he could do--was to be there. And then there was Paige. The most heartbreaking of all the tears shed were those in the eyes of my 16-year-old daughter telling me she didn't want to die. That she wasn't ready. That she knew where she would go, but there were still so many things she wanted to do.

One particularly rough day, Paige awoke so confused she didn't know me. She didn't recognize me--the person who had been by her every minute for more than two years. She didn't recognize her mom. There was fear and panic in eyes that were usually filled with joy and some kind of mischief. Her brain was able to 'defog' after a few minutes, but the damage was done. Paige knew things were getting worse. The confusion became more frequent. Nurse schedules were adjusted to provide consistency with the hope of making things a bit easier on our girl. I cannot say enough about Amber and Emily, our nurses the last few days. Those ladies were patient, loving, and took incredible care of Paige (and her parents) as our girl was becoming less and less connected to her earthly home.

Just a day before she left us, Paige woke up particularly agitated. It took many gentle assurances to get her settled down. Convinced someone was trying to take her away, she kept pointing up and saying, "No. No. No! I'm not going yet. I'm not going with that man!" Paige was adamant in her protests as she drifted back to sleep while the rest of us looked at each other in amazement at what she had said. My girl slept a lot that Saturday. A whole lot. That night she awoke crying out in pain and with still more confusion. As I held her with likely the tightest hug ever, she said, "Mom, I can't do this anymore. It's too hard."

God surely spoke through me that night as I told my daughter that she didn't have to do this anymore. That we knew how hard she had fought. How very much she was loved. That I was sure that the man who came for her was Jesus--and that when He came back, it was okay for her to go with Him. He would take away her pain. He would take away her disease. She would be whole in Heaven. I held her tightly and told her I loved her. Paige's reply: "I love you too, Mom." Those were the last words I would hear my daughter speak to me.

The next 24 hours or so felt like an eternity as medications were administered to keep Paige comfortable. That was our only goal at that point--to keep her free from pain and suffering as she made the journey to her Heavenly home. Our TCH family members were in and out of her room that day, many of them simply looking at Paige with tears in their eyes, unable to say much of anything. They loved her too. Boyce and I held her hands, stroked her beautiful, curly hair, and told that girl over and over and over again that we loved her. That we would always love her. That even though our time together on Earth was coming to an end, we would all be together again one day.

We didn't leave her side.  We couldn't. We had to soak up every single second we had left with our precious Paige. I kept my eyes on her the whole time, watching her chest slowly rise and fall. Paige's oncologist came to visit late that night, and in her typical fashion managed to make us laugh about something I can't even recall now. Yes, we were actually able to laugh at something in the midst of the most heartbreaking time of our lives. She stood up to leave, assuring us she would check in the next morning (which was just hours away at that point). Boyce and I went to hug her, and for the first time in about 24 hours nobody was holding on to Paige's hands. I turned around, and my girl had quietly left. So completely at peace-- and so very much just like her to wait until I wasn't watching. In the blink of an eye, Paige left behind her broken body and stepped into Heaven, forever healed.

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Paige, my love...it's been a year for us, but probably more like a second or two for you. Thank you for the privilege of being your mom. Thank you for putting up with my fierce love for you. Thank you for helping me find joy on the hardest of days. Thank you for living out your faith in a way that just made you shine Jesus' love all over the place--even in your sassiest moments. I love you, sweet girl. Always. See you in a little bit.


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

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