Hi Baby Boy. I love you. I hope above all else you know this and feel my love every second of every day and night. I don’t know if you have seconds, days or nights where you are but I’m never not thinking about you. You have my heart and soul so intertwined in yours it is impossible to separate. I really do hope these pieces of myself already left this world with you. I truly believe they have so you never feel like we aren’t with you. I just wish I had proof. For now, I have to think my evidence is in the fact that I don’t feel things like I did when you were here. All my awe, wonder and excitement are with you. You brought these purest things to me and they were everything magical and perfect that I never knew could exist in this dimension. You gave me enough love to last my whole life and I will spend the rest of my life trying to share that gift with a world who still needs you. Caleb, you were truly all the best parts of Daddy and me and a massive dose of something for which we could never share the credit.
I don’t know how we ever got so exceptionally lucky to be your parents here on Earth. Another great mystery I wish you were allowed to tell us. Did you handpick us or does it work another way? Did you know from the start that your time was limited? Daddy said he thought you knew how desperately we would miss you and that when you cried at night you were really crying for us. Is that why you always gave me hundreds of kisses and squeezed me as tight as you could before I left your room? I always let you stay up later and loved how you always wanted to keep giving me all your smooches. The more responsible parental unit was not nearly as enamored when he had to come break up the love fest, but he knew if he didn’t intervene, neither of us would ever go to sleep. It was so easy being with you, Baby Boy. I’ve never had anyone “get me” so much as you. I loved just being with you. It didn’t even matter what we were doing. I could stare at you “reading” and talking to yourself or watching the wheels from your toys for hours. No one has ever made me laugh or given me so much pure love as you. You were my little buddy. The most fun little bear cub who would’ve probably always stayed quite smaller than any real bear. Being without you now is more than I know how to handle.
Yes, I always come back to this central theme. I miss you, Caleb. God only knows how much. I would give anything in this world or the next to get to kiss you goodnight right now. I still wish I had some sort of Facebook Live stream so I could at least see you again. I am constantly wondering what you are doing in every space of time. Do you still hear Mommy’s daily messages or are you forced to travel further into all the secret places and leave these connections behind?
There is no way to even begin telling you how much you are missed, Baby Boy. More with every second of every day and night. Is it selfish to miss someone so intensely when they are literally your flesh and bone and half of your own DNA? Does this mean I miss a huge part of myself, too? It’s a kind of primal yearning that is more powerful than any of your deepest wishes. You know how we took you to the place with the fire engine, dump truck, tanker, police cars, and all those awesome vroom vrooms with huge tires and buttons that made everything light up or activate computers or sirens? Do you remember how you tried to keep fitting as many vroom vrooms as you could hold in your hands when Mommy hid them in your eggs for you on Easter? It’s like yanking you out of the tallest of all of those trucks and ripping every last vroom vroom from your hands. It’s kind of like that and no one ever explains why they did that cruel thing to you. It doesn’t matter how many times you ask or say “peas,” you never get to see them ever again. People make up their own reasons why you don’t get these things anymore and you spend hours trying to find out what you did to deserve this and how you could’ve stopped the evil people from stealing your greatest joy. I miss you more than you’ve ever loved a vroom vroom from any store or parking lot.
I see those videos of soldiers coming home and surprising their kids after months of being apart. Each child jumps into their parent’s arms and cries and never wants to let go. This is what I want to do with you. I wish someone would surprise me and send you running out from the hallway giggling with every step closer. I would scoop you off the ground so fast into my arms and there would be so many tears. I probably might collapse into the floor with you and never stop giving you kisses. Everything else in the world would disappear and all would be made right. It would be a fierce, ugly cry too intense for Kleenex to contain and too much emotion to even say a word. I would squeeze you so close to me and finally get to see you smile with your whole face while hearing that high-pitched, hysterical laughter again, a mere inch from my own contented expression.
I’m waiting for someone to tell me all of this was just a long snap of psychosis and I am finally cured of this prolonged, wicked torture. Still, experience tells me there are not dreams that last this long or that have this many disturbing details. I know this isn’t how your story ends and I’m trying my hardest to not let it be the end of mine either. Daddy and I are still sharing you just as we did when you were here. I know you were never really ours to keep. I just thought we would get to have you a lot longer than 2 years, 2 months, and 23 days.
As usual, people are also still strongly drawn to you. You have that special something that compels us to become a better version of ourselves. Even those who never met you are overcome by making room in their unsuspecting hearts. People who swear they aren’t “kid people” adore you. How do you do that, Caleb? How do you win over every single person without even trying?
It seems like every month I have less and less time and energy to keep my eyes open and write to you, but it doesn’t make me feel any better about having such a delay. We live in a “hurry up” world where the longer we wait the more likely we risk losing our small window of opportunity. There are many pressures here and things you never had to experience and also other stressors and expectations all my own.
Still, I don’t want any more time to slip by without telling you about Nice on the 9th this month. I know you and your new friend, Keaton, were so hard at work and play. I can only hope you guys were happy with all of the ways you were introduced and remembered. We hope we made you proud.
There are so many things you never knew existed here. One of those things is cancer. You had more than your share of doctor visits and days where you weren’t feeling great because of strep, croup, asthma, the flu, or multiple other common sicknesses. However, except for the time spent immediately after birth, you never spent a whole day or night being stuck in the hospital.
Cancer is one of those enormous topics we never explained to you because you were so little. Then again, there are so many conversations we didn’t get to have. This one isn’t a happy topic but it’s the reality for too many. Your friend, Keaton, and thousands of other kids have had to live at the hospital for days and even months at a time after discovering they had this really awful thing living inside them. When cancer shows up, everything changes.
Instead of just taking regular grape-flavored medicine to fight off the things making them feel yucky, they have to have these things called “ports” installed on their bodies so their medicine can work better and the hospital can test their blood a little easier. There is a lot I could say just about this part of their treatment that would make you uncomfortable, so for now I will just tell you it isn’t very fun and would probably make you say “owwie.”
When you got sick, you got to stay at home in your zip-up, footie jammies, but kids in the hospital don’t get to put on their regular clothes and they don’t get to be at home with their families. They have to wear a gown with snaps on the shoulders and sides, and sometimes they have to put on a little blue mask so the germs don’t jump into their mouth or nose. Our hospital here has gowns with orange tigers on them but I don’t recall ever seeing any with vroom vrooms or superheroes like were on the outfits you got to wear (maybe you can help change that).
Rarely, when you were feeling especially bad, you would let Mommy comb your hair with her fingers and trace the “hurricane” of thickening, mousy strands perfectly swirled around the crown of your head. A lot of kids like Keaton take medicine that makes all of their hair fall out so their mommies and daddies don’t get to soothe them this way. The children have to wear hats or cover themselves in blankets to stay warm. You LOVED to eat but sometimes kids with cancer have a hard time even keeping food in their tummies.
Some little ones are too small to even understand why they feel like this or why there are strange people in their rooms all the time. You were such a social little boy, having new people coming to see you probably wouldn’t have bothered you, but when you have cancer, you don’t get to be around your friends or play in the floor with your trucks. You have to be connected to tubes and drag beeping machines with you everywhere you go. You loved taking in all the new adventures of life, but some toddlers don’t even get to leave their rooms! Even steamy nebulizer masks and ear drops couldn’t make them feel better.
You don’t have any siblings, but the kind of cancer Keaton had made it hard for his body to fight off any of the things that make us sick. His brothers didn’t get to go to fun places like on an airplane to visit family, “twos,” or a playground where you got to make lots of other friends.
This is just a tiny glimpse into the world of cancer. It’s not even close to the whole, gut-wrenching picture of devastation but I don’t think you are allowed to know about all of those kinds of things from where you are now anyway. Mommy volunteered at the hospital for a long time before you were born and witnessed both incredibly tragic events as well as some of the toughest, most beautiful little souls I had ever met before you came along. I was allowed to be included in some of the most private moments a family could ever face and for those times, I will always feel privileged to have been a small part of caring for their kids. Still, there is no way of experiencing everything a family has to face when someone they love has this terrible disease.
I couldn’t just tell you about our project for the month without telling you why this is so important, so now that you have the back story, we can get to the happy parts. LEGOS!!!! Did you know that this month Keaton’s mommy and I got to talk about you on the news? Heather Holeman with KFOR-TV showed your pictures on the screen and let two beautiful boys capture the attention of thousands. With so many heated debates down here, this was one story that united people of all kinds of backgrounds and beliefs. Everyone can agree that giving Legos to kids fighting cancer in the hospital is a good thing, so that is exactly what this Nice on the 9th provided.
Since kids don’t get to go play with their friends at school or leave the hospital, people like the “K Club” bring huge Lego sets to the kids and let them choose one to keep. Little patients spend a lot of time being told what medicines to take, when to eat or drink, and how they have to do almost everything. Getting to pick a Lego set might be the only decision they get to make in a day and it’s also a really good distraction from all of the serious things. Building Lego creations lets kids use their imagination and just be kids. We think that is pretty awesome so we chose the K Club as our charity of choice for October.
Before Keaton joined you in the clouds, he created the K Club with his friend, Kay. Even though he was in the hospital with a cancer that invaded his body since the time he was just a couple of months older than you, he was still thinking about other people more than himself up until his last moments. The “K” in Keaton’s club is for “kindness,” and that is the gift he continues to give to this world. I knew as soon as a friend told me about them that we needed to join forces. When I saw the video I knew somehow you had already found him. Together, you are even more mighty than before.
We spent the 9th at Main Event and we could not have been happier with all of the ways you had people showing up to “be nice” and how Keaton was still silently cheering on incredible displays of kindness. From the very first person who showed up early to drop off Legos on his way to his own cancer treatment, to the last employee who shared his story of overcoming obstacles, it was a massive success.
One of our earlier visitors was a couple who came in and had no idea about Nice on the 9th or the K Club. They saw both of your pictures at the entrance and Mommy told them all about you guys and why there was a growing collection of Legos. The woman told me that they almost didn’t go to Main Event because they were afraid it was for little kids and didn’t want to be the weird adults bowling. Without knowing you or Keaton, she opened her wallet, pulled out $25 and said “Here. I know Legos are expensive.” Wow!
The man with her told us how his son had cancer at 2 and has been fortunate to be cancer free now for many years. Then, as I was introducing our new friends to Keaton’s mommy and daddy, the lady decided she wasn’t finished giving. She asked if she could say a prayer for us and once again gave from her heart. I am MUCH more of a “go to your closet and pray” kind of person, but I knew she was overcome by both of you and wanted to do whatever she could to help. She was sincere and shared many personal details and struggles she and her son with autism have faced over the years. She said, “Where two or more are gathered in your name, God we know you are right here next to us.” I’ve heard this before but why do we say this? Maybe that is just because I don’t stop thinking about things, but I imagine God is also there with one person or a trillion. For what it is worth, I made a note to ask someone about this later. Despite my slight mental distraction, it was pretty surreal to think about God being right next to us. Even heaven is a hard concept for me to imagine but I’ve heard too many near death or end-of-life stories that make me think there has to be more than just nothingness. Things I never would’ve believed before and FAR too many signs that cannot all just be “coincidence” have to add up to something. Still, I think whatever version of heaven with harps and chubby angels (they are called “cherubs”) aren’t my idea of what this place would really be like. My brain was not at all prepared to stop and close my eyes as I try to keep my “game face” on in these situations. However, listening to a perfect stranger asking God to help us through all of our pain of not having our little boys in our arms was more overwhelming than I had imagined for my afternoon. After a quick trip to the bathroom to fix my “waterproof” mascara, I was just in time to greet another friend with a bag full of Legos.
There are so many things I could tell you about the way you guys came together to show us how to live but this is already longer than you ever would sat still to hear. It seemed like every few minutes there was another new friend bringing the conversation deeper and deeper. There was an athletic man who drove a truck for a long time. We talked about being away from home and dealing with issues of loneliness and race. We were both perfectly comfortable talking about scenarios that most people who’ve known each other for years shy away from discussing. He laughed as he told me about how he has to make the lighting right in pictures or sometimes you can’t see him at all. I told him how he was our kind of person and how refreshing it was to discuss our obvious differences in such a light-hearted way.
Even the employees took turns in telling us about their personal lives. One told us how he was doing his best to show his kids a good example; another showed up and his first question was “how can I help?” The same teenage offered to donate all their tips for the night for a future event. What? I remember being a waitress and I definitely couldn’t afford to spare more than a few dollars, much less an entire night of pay.
I really hope you got to hear some of the deep conversations you guys prompted. In all of these visits, not one person brought up all the drama going on in our political world right now and they didn’t try to gauge how much money anyone had or didn’t. Whether you had multiple degrees or a variety of degrees of experience, everyone was just another person with so much more in common than not. It is something I love about these events. We don’t have to have anything in common in order to be nice to support a worthy cause. Gabby Mangrum gets extra bonus points as she insisted that she both pay for my dinner and that I actually sit down for a minute and eat it after the event was over. Thank you.
Our mission was to collect Legos and notes of encouragement for those still going through a very physically and emotionally draining time. However, I can confidently say that everyone who attended got to leave with a full heart (and for some a few less tears), and so much more than a colorful sticker that showed their participation.
Your friends helped us create 55 letters and pictures, meet some of the friendliest people, and load A HUGE mountain of Legos that filled Keaton’s entire minivan. Last I heard the count was up past 150 Lego sets!!!! The lady we met earlier in the day was right. Legos ARE expensive. This means a LOT of people were EXTRA nice on the 9th!
Please send a very special thank you to the nicest staff at Main Event. We try to use as much of the donations we receive in your memory on spreading kindness and promoting awareness of SUDC (Sudden Unexplained Death in Childhood) and the SUDC Foundation, but we had no idea they would be so accommodating. In addition to not charging us a penny to use their clean, centrally-located and FUN facility, there was always someone there asking us if we needed more water; introducing us to their crew; filling out more $10 bonus play cards when the Lego donations kept coming; and ensuring all their employees knew of the two boys with hearts so much bigger than their Earthly bodies could contain in this life. They most certainly earned their “I was nice on the 9th” sticker they proudly wore to honor the day of the month you were borrowed from the stars.
Thank you, Baby Boy for such a meaningful day with old friends and new. Look after all of the people like your teacher, Ms. Shannon, who are fighting cancer. Be especially present with the kids and their families as they make decisions and wrestle with options no parent or child should ever have to face.
Thank you for making that little feather appear right next to the pile of Legos for your friend, Keaton. His buddy, Kay was there when we discovered it on the floor and she showed us the chills it sent all down her arms. That made two feathers for Mommy in one week. Thank you, Baby. Also, I like how you made sure TWO, star balloons made their way onto the ceiling. Perhaps that’s just another coincidence. I wonder how long they will stay there.
You really are making this world a nicer place, Caleb. Keep showing us the way. I’m late again, but I hope you and Keaton had a very happy 9th.
I love you. I always will. I can’t wait to be nice on the 9th and every other day when I’m finally with you again.
One day.
I love you.
Love, Mommy
XOXOXOXOX
#calebeffect
#kclubkindness
#niceonthe9th
#fightingcancerwithlegos
