Timing

Well, after 16 months of work--some weeks more intensely than others--I finished the first draft of the book. I printed two copies, one to work with and one as a keepsake.

There is a possibility that it'll change, but I really like the title. Josh actually suggested it when we were discussing how Choosing Joy or Finding Joy seemed too overused and cliche. But the book really is about joy and how to experience it during difficult seasons as illustrated through our cancer journey with Drew.

"How about Grasping Joy? You have to really hold on to it in tough times." 

That's it! And as someone pointed out, it can also mean that we really came to understand joy that year, grasped the concept. The book kind of explains joy or teaches it through the story.

Perfect!

There's still plenty of work until it's actually done. At 276 typed pages and 146,269 words, there will be some thinning out to do first! Multiple rounds of editing. But at least I'm through the story. I poured over each CaringBridge post and personal journal entry from Drew's last year of life. I went through photos trying to gather details for certain moments in time--the pattern of the pillowcase, the look on Drew's face. 

On the blog here I use a lot of photos to help tell my stories, but in a book, I have to create the pictures in the reader's minds. Bring them on the journey with us through good descriptions. Something I found very challenging at first but started to get more comfortable with.

I got the first draft done the week before Christmas break. I gave myself that deadline so I could put it away, rest from the emotional work over the holidays and through the first of the year. The books I've read on how to write a book say to leave it for at least six weeks, so when you come back to start editing, you have fresh eyes and a new perspective. So that's what I'm doing!

Thank you to everyone who encouraged me along the way. My friends who listened to me as I processed the part of the story I was working on. Who gave me sympathy again and again as I sat with my grief. I really couldn't have gotten through to the end without people cheering me on and reminding me of why I was putting myself through this again. In a way, we all finished this big first step!

As I was bringing the story to a close in December, reliving the last joy-filled moments our family of four shared together in Disney World, God was working in the present. We've been praying about and working to secure a fourth branch of Warrior Wagons ever since COVID. But we kept hitting road blocks. The hospital we thought was our next one, fell through this fall. It was disappointing and left Josh and I frustrated. 

I started praying--if not that hospital, then where? If not that family to coordinate, then who? We kept ourselves open to other opportunities, while I kept writing. And then in November, someone approached us about getting Warrior Wagons in their hospital. She had heard about Warrior Wagons from someone at a nurse's conference and wanted to find out what it would take to bring them to her patients. 

We set up a meeting with the child life department, and details were worked out quickly. When it's meant to be, it's amazing how fast things can come together! I sent the first round of supplies to our new coordinator, and the first Warrior Wagons were given out at the hospital the week of Christmas. God answered our prayer of a new branch to Warrior Wagons in 2022, with just a couple weeks to spare!

So, on the same week I wrote the last line of the book, another chapter of the story was unfolding around me. The timing wasn't lost on me. I sat in awe of how God knows just what to give us when we need it most. On that week, as my son died again in my writing and I sat looking out my window totally broken a second time, God provided a reason for hope. For joy, once again. I was shown the good still coming from my Drew's life. Seeing some of the purpose in His plan as I read the first application that came through.

Drew's Glory Day is coming up. Next Thursday, January 19th, will be six years. Six years since the journey I just chronicled came to an end. Remembering the time just before his death, when we went on his Make-A-Wish Disney trip is just as painful as the week Drew died. The weeks were so close together, and in such contrast. The best week of our life followed by what I hope will be our hardest. 

Disney week was such a gift. It was the climax of our journey to real joy on this Earth. The happiness and love we shared was larger than life, went beyond our circumstances. Drew's sparkle seemed to fill the whole park. 

But its incredibly bittersweet to know that his sparkle would go dim just over a week later. He'd be gone, our little boy would leave us for Heaven, and we'd begin our own journey--with grief. 

And it has been another epic journey, our journey with grief. Transitions, stages, realizations, and acceptance. Sharing the path we found forward after such a tragedy could be the subject of another whole book. When I look back to where we began, those early weeks after Drew was set free, I can see how far we've come along that path. I'm sure you can see it too, as you've followed along. 

Another Warrior joined Drew in Heaven a few weeks ago. As I exchange messages with his mom, and with our own death anniversary approaching, I'm reminded just how tragic this ending to the cancer journey is. How unfair, how awful it is that any mother has to give her child back to God. My heart goes out to her, because I'll never forget what it feels like. It tears your heart out, it really does. A part of you dies with your baby, you're a different person after you leave the hospital for the final time without your child. 

Over the last six years, though, I've come to really like the person I've become. Which doesn't mean I have to like how I got here, of course not. But that I recognize and appreciate what God has done through our devastating loss. How much he's grown us, the places He's led us, and the work He's given us to do. 

On break from the book, as we mark another year without our son, God is showing me the big picture. Reminding me that He really does work all things together, revealing to me the ways He is still using our pain for something bigger. And that really is a comfort, exactly right now.

Because boy, I still miss my Drew. The phrases he used, the way he teased and joked around... 

Drew was SO full of life, up until his very last day. He pushed through, kept going, even when it got hard. He had grit, a buzz word as of late. But if anyone had grit, it was our Drewy. 

How poised and wise he was, at just two. He had a joy that cheered everyone up around him. 

Gosh, I just wish I could jump back into these photos. Kiss his sweet face, feel his weight in my arms again. Breath in and smell him again...oh I hate that I've lost that smell. I will spend the rest of my life longing for my baby boy, my precious son. 

He was in my dreams recently. I don't dream about him often, but just last week we were together. I was trying to give him a bath, but he kept standing up. I told him to sit down over and over. He was smiling and being ornery. Baths were always a part of our days, especially in the hospital. A special time that was always the same, no matter where we were. 

In my dream I carried him on my hip and we walked out of the bathroom after we were done with the bath. And then...then I woke up. And before I opened my eyes, I felt a wave of sadness that the dream was over, that he was gone again. It's always hard to get up on mornings when I've dreamt about my Drew.

But you know? I'm far enough along in my journey of grief to recognize his energy, his joy, in the present. There's been enough time, I've grown enough to allow the memories I recorded in the book and the dreams I have of him to not just make me sad but brighten my day. I can bring his sparkle into my life again, share it with the world, which brings me great joy.

I don't know what will happen with the book once I really am done with all I can do. I have a couple of people who have offered to edit for me. Which I'm thankful for! But from there, I am praying God will keep leading me into the next step. Go ahead of me and set up my path. Put up signposts and markers, arrange connections with people to guide me into publishing.

I've now spent over a year writing about how He did just that in 2016. The truths, promises, and lessons I learned as we went through cancer with our son are fresh in my mind as I move forward with this project that is very daunting in its own way.  But I won't let the enemy discourage me. No, I can't make anything happen on my own. The book will never be good enough if it's all up to me. But with the Lord's help and His hand of favor, nothing is impossible. 

We prove that, by where we are today. Six years from when we sat beside our son as he took his last breaths, and we looked up to God because we knew we couldn't move forward on our own without Him. Since then, He kept His promise of never leaving us. Of helping us through. And then He continues to add to the story we thought had ended on January 19th of 2016.

On this Glory Day especially, I'm thankful you're done with your earthly journey, my Drew. It was hard, and sad. I just spent 16 months crying about all that happened to you, all the times you hurt and I couldn't make you feel better. A lot was asked of you, there was a lot you had to endure without understanding why.  

I will try to keep moving along on my own journey, even if I don't understand each step. Let God use me as He did you. Trust His timing that is always perfect. Not too early, never too late.

I will bring you with me Drewy, watch for your presence in this world. Always looking forward to the day I hold you in my arms again sweet boy, give you a baths, kiss your face, and smell your smell 💖

The End of the Story

It's November 1st, 2016.

I've been diligently writing Drew's story since school started last year, and I've made it this far, to this day. 

                                                        

I am ten months into the story that has included some tough weeks. Weeks where I couldn't hardly continue, remembering the specific suffering my Drew endured along his journey with childhood cancer. 

I saw those weeks coming--the bowl obstruction, when stem cells collected, infection during transplant, and when Drew got C-diff, to call out a few. They were trying weeks six years ago and were still hard this year to go back through and record the details. 

It's not like I'd forgotten the three days he was hooked up to a six-foot suction tube from the wall to rest his digestive tract during cycle 3, or the way the bone marrow stimulant shots made his bones ache before each stem cell collection attempt, or just how many lines he had running drugs into his body at certain times. But those details were just tucked away, left where they had been placed six years ago. 

                   

And it hasn't been only the particularly difficult weeks that have been hard to revisit, but remembering the general feelings found in the parent's experience of childhood cancer. The exhaustion from countless nights of administering medications and changing bedding and little boy jammies after night-time pukes; the homesickness and missing the rest of your family during long hospital stays; and worst of all--the helpless feeling of wishing you could take the place of your child and give them a break from the sick and the pain.

Feelings that become so familiar and constant, you almost forget how heavy they are as you move along on your child's journey with them.

                                            

     

But as I dig into the CaringBridge updates and my personal journal entries each week to move the story along, I have been amazed at God's grace shining through. The small but meaningful moments when God showed up during those times when I thought Drew or I, would break. The miraculous ways we were used for something much bigger than we knew as we just kept our head down and marched on. And the undeniable joy God taught us to find in each day.

 

  

The good weeks have been hard to write too, to be totally honest. Recalling the celebrations of successful surgery, transplant days, and ringing the radiation bell hurt in a different way, and maybe in a worse way. 

 

 

Watching the hope build, the relief wash over our family after crossing each milestone, is more than bittersweet in hindsight. A twisting of the proverbial knife, knowing how the story ends. I'm grateful for those triumphant days but wish so bad it hurts that it had led up to a victory on this side of Heaven.

And that's where I am today, where I pick up the story. On the day we met with the Oncology team on the day after Halloween to discuss the 2 new spots of Neuroblastoma. They showed up on the last scan before we were supposed to begin immunotherapy. We learned that day that Drew would not survive this disease, his prognosis had changed to terminal. It was actually the beginning of what would be the end. 

Most of you know how the tragedy unfolds. How in just over 11 weeks, Drew would leave us and this world behind for a better place. Cancer would end his life, but his soul--his sparkle as we explained to Molly--would finally be free of the weight he'd carried in his body for most of his short life.  

As I brace to bring the book, Drew's story, to a close, I'm fantasizing about ending it my own way. Rewriting it so that my boy lives and is here today instead of taking his last breath before he even turned three. 

It might follow this rough outline:

The scan that everyone anticipated to be clean, was indeed free of disease. Drew and our family had yet another celebration on the heels of ringing the bell after radiation before beginning five cycles of immunotherapy.

Each round was difficult, as warned. There were some long nights, some scary moments. But God was with us, as always, and gave us strength to prevail. We learned some more lessons on gratitude, trust, and joy which added to our faith.

Drew continued to grow up in his last phase of treatment. He graduated to a big boy bed, finally moving out of the crib. We cheered him on as he learned to use the potty for good--ushering me in to a diaper-free season the more traditional way. 

What had become Drew's signature bald head filled in with thick, darker hair. It only took him a week to transition back to table food after removing his feeding tube, and the physical transformation was striking from just six months earlier when he was in the heart of treatment.

He was fitted for hearing aids and that lifelong journey began. There was a sharp learning curve, but all of us got used to Drew's new hardware quickly. Although it was hard to fine tune so-to-speak, make adjustments to them with a two year old's input. 

Finally, we finished immunotherapy, and plans were put together to go on our Make-A-Wish trip. The last hospital stay was complete, the last pill was taken. Drew successfully completed cancer treatment for the very dangerous stage 4, high risk, neuroblastoma making him a survivor just before his third birthday. A birthday we celebrated in Disney World, where wishes really do come true.

Today he is a living reminder of God's faithfulness and mercy. Drew's sparkle still fills our home, and his favorite thing to do is cheer people up, make people smile. He has all the energy of a little boy, but now in a big kid body. Gratitude fills my heart every morning when I wake up with my family, my two ducklings. They are in 5th and 3rd grade, and we continued to live each day to the fullest, not taking a moment together for granted. 

I wish I could write that out, and somehow it would be true. Like I could alter the past and create a new reality with my keyboard. I think my narrative sounds pretty good, pretty realistic. Not without hardship, and honoring God. 

But it's just a fantasy. Wishful thinking. The real story is much more dreadful, more heartbreaking. 

Looking back, much like at the time, the biggest emotion I feel at this turning point in our story is disappointment. We were so, so disappointed that after all we had been through, after all the prayers and hope, it wasn't going to work. The cancer would take over Drew's body, and put out the light in our family that we loved so dearly. 

I've wrote before about asking why. How I decided there was never going to be an answer to why that satisfies this mother's heart. To me, there always could have been a better way. Some other plan that would have accomplished as much but would have allowed me to keep my son. 

This way is just not fair. Not fair to my Drew, who endured, cooperated, and trusted us the whole way. I've had to pause on my writing days to cry for what happened to him. All those hard weeks that he didn't deserve--no one does--and remembering his smile through it all. His drive to just be a little boy, despite what was going on around him and to him. 

God has reasons for why he allowed Drew's story to end as it did. I just have to keep trusting that someday, I'll understand. 

I know in my heart that Drew understands. For a while now I've had a strong feeling that Drew knows all that came of his suffering, maybe even all that is still to come, and he'd do it all again. The pain wasn't too much, the ending wasn't too disappointing. The cost wasn't too high for what it brought to the world, for what it fulfills in the Master's plan. Time and time again as I've sat and cried this year for what my Drew silently endured, I've been given that peace, that reassurance that it's okay. Drew's okay with his story, from beginning to end. And if that's true, then I guess I can be okay with it, too.

No, I don't have my son here as a living reminder of God's faithfulness as I would in my wishful account. But is living today in Drew's memory just as powerful a reminder of His faithfulness? Is the shocking and sorrowful ending the Lord wrote more effective at displaying His goodness and love? Would it be as impactful of a memoir to write if we had lived happily ever after?

There is another place we see God's faithfulness and provision in this reality--through Warrior Wagons. An organization ran in Drew's memory, that brings joy and hope to families on similar journeys. We may have begun the program if Drew had successfully completed treatment, but certainly not when we did and with as much energy out of the gate. Warrior Wagons was born from Drew's death, and today we've shared his legacy with over 300 families at 3 different hospitals.

When I switch between writing the book to Warrior Wagon work each week, I'm thankful for the reminder that Drew's story really hasn't ended after all. His life continues to cheer up and make people smile to this day. We have to look a little harder for his sparkle in the world, but it's still here.

  

Yes, there is goodness in God's ending of the story, my head knows there is. My heart realizes it, too. 

I really want to get through this initial stage of the book, finish the first draft. Like I said, I've been working on it now for a year, I started when Molly went back to school last year. We've continued to live our life as I write, celebrating holidays and taking vacations. But I plan to pick up the pace a bit here, in an effort to have it done by Christmas break. It will be nice to not work on it during the holidays. Have some relief from routinely recalling these difficult memories.

I've covered a lot so far and have actually gotten most of the way through. This last part though, the last two months, I know are going to be a challenge to my resolve. But you know? The first 10 months of the journey haven't been easy to put together. Just like in the story itself, I will rely on the Lord to give me strength, inspire the words, and carry me through to the last events of Drew's life.

I won't include my version of the ending of our journey in the book, even though I'd like to. No, I will complete this story with God's ending. Continuing to trust that it is actually the best ending. Knowing it really isn't an ending at all, just the beginning of a new chapter for all of us. 

Drew's Birthday

 

Tomorrow, my Drew would have been eight years old. 

He would have been, if he hadn't died before he even had the chance to turn three. We've marked Drew's birthday five times now without him. Each time, it has been hard. 

His birthday is harder for me than his Glory day. I think it's because on his birthday, it highlights what could have been. It points out not just his life that was lost, but the life that was lost. Years, decades, an entire lifetime of milestones that will never be achieved. Events that will never take place. Moments that have been put on hold until the next time we are all on this Earth together.

Birthdays take a parent, and a mother especially, back to that first day with the newborn baby.  It reminds you of the journey that was taken together, you and your child, bringing them into the world.

Your heart remembers the wonder and joy of that new life that was just beginning. The hopes and dreams you had for your precious baby, as you thought about the whole lifetime they had ahead of them.

For those of us who have lost a child, birthdays are like salt in a forever-open wound. The twisting of the knife that will only be removed after we're reunited with our baby. 

It's so hard to picture my sweet two-year-old Drew as an eight-year-old boy. Would he be as tall as his sister? How many teeth would he have lost by now? What would be his favorite dinner, what he'd request for his birthday? What would be his favorite subject in school, what sport would he be playing? Would his blonde hair have darkened up like Molly's has, or have stayed light? 

Would he and Josh have a great father-son thing going, or would he be close to his Mama like many sons are? I already saw how much of a tease he was to Molly in his first two years, would he still be trying to drive her crazy every chance he got? Or maybe be a protective, caring little brother?

I can only think about what Molly was like at 8 to remember what that age was like. 

It's amazing that we were already living in Illinois, soon to be moving to Colorado, when Molly turned eight. It was the birthday we took her to the American Girl doll store in Downtown Chicago, where she had earned half the cost and we covered the rest of her very own *real* American Girl doll.

What would Drew have wanted for his birthday? Probably not an American Girl doll. Would he still be into John Deere? 

Maybe he'd have moved on by now and be an expert at Fortnight or Minecraft like many other boys at age 8. 

I hate that I'll never know. I sit here crying because I can only guess at the answers to all of these questions... 

I continue to spend time each week writing, working through 2016. As I go along, I am reminded just how much I enjoyed being Drew's mom. How much joy he brought to me nearly every day. Watching him endure so much, yet maintaining such a positive, warm attitude will always leave me in awe and full of pride.

 

Reading through stories in my journal, looking through photos, I remember what it was like to be Drew's mom. How it felt to have a boy who liked to make noise and messes. Who was always on the go and full of energy, but also the only one of my kids to enjoy and seek out a good snuggle. 

On his birthday this year I'm grieving him to be sure, and what could have been. But I'm also grieving my identity as Drew's Mom. People don't know me as that anymore, and they used to. 

I miss that.

 

We are freshly home from a big Spring Break trip. I shared photos this week, and it was every bit as wonderful as the images appear. We had the best time together, really enjoyed each other. Our family of three was in our groove together and had genuine joy experiencing new things. 

 

But as I've wrote before, joy and sadness go hand in hand. Both are present, and both are very real. It took me a while to recognize, to believe that. I can be truly happy, and also sad at the same time. 

Our trip was like that.

While our family of three had a wonderful time, my heart never forgets that we would have been a family of four. And there were glaring reminders of that all around. 

The smiling family photos that Drew's face is not in. 

The empty seat at the dinner table always makes me wince. 

At the water works area, when I watched Molly stand behind the brother and sister gearing up to race down the side-by-side slides. And then she stepped up to take her turn, and went down alone.

The light small talk with strangers in the elevator, or in line for pizza, that seems to always include the inevitable question "Is she your only one?" 

It's hard. It's a challenge to handle all these reminders of who's not there with us. Yet, we are getting better and better at dealing with it. At expecting and accepting those little blows around every corner, and still having a great time. It takes practice and intentionality to focus on the present, on the good, in those moments--to choose joy. But it's possible. God helps us through.

And so does Drew. He did a great job of letting us know he wasn't so far away after all as we made our way through the weeklong cruise. Together and separately, there were little coincidences, subtle and not-so-subtle nudges, that the brother and son we all wished was with us, actually was. Like a rainbow that appeared over the ocean, as we sat on our balcony talking about how Drew would have faired snorkeling that day.

I know the right answers here. I've already come the correct conclusions about Drew's birthday. He really wasn't ever going to live to be eight years old, or any other years older than two. God's plan for Drew's life played out exactly like it was supposed to. He wasn't, and neither were we, "robbed" of those milestones, the life moments. They never were ours to begin with, we just thought they would be.

We are thankful for the time God did give us as a family of four, as parents of a daughter and a son. I'm grateful for all the moments we did share together, the milestones Drew did reach in his short life.

I am still Drew's mom, and always will be. He is a part of me forever, and I bring him with me wherever I go. Nothing can change that. 

Molly will become the person she is destined to be. Not in spite of the loss of her sibling, her brother, but because of it.

Drew is with us on every vacation, every new adventure. I just know it!

God will restore all that was taken from us, the life that was lost. Someday, somehow, we will be made whole again. What that looks like and how it will feel we actually could spend time contemplating, because it really will happen! 

Lord, bring on the day.

But before that glorious day, and especially on my Drew's birthday, I can be sad too. Miss not just him, but his place in our family. I can miss who I was when he was here, and the son that I don't get to watch grow up.

April 1st, 2014, will always be a special day--the day we were given the gift of Drew James Becker. We couldn't have known we'd only get to keep him for less than three years. And I guess I'm glad we didn't know. I'm grateful we did have those special moments of hope and joy as we looked upon his face eight years ago. 

Happy Birthday my sweet baby boy. I wish with all my heart you were still here with us and blowing out eight candles tomorrow night. Not a day goes by that you aren't thought about or talked about, and I hope that's always true. We love you and miss you so much 💕