I found Elle this morning sitting by herself in the dining room, staring at a series of citrus fruits that she’d lined up on the table. Like spherical, neon-hued soldiers all lined up and ready for duty, Elle sat very calmly in front of them with her hands folded in her lap, just staring. Laundry basket in hand, I stood and watched her from behind a corner, not wanting to disrupt her from whatever it was that she was doing. I watched in curious anticipation, waiting to see what exactly was going to happen with those pieces of fruit.
“Elle?” I asked, having growing tired of balancing the laundry on my hip. “What are you doing? Do you want some fruit or something?”
“Sure don’t, Mom.”
“This fruit is very beautiful. Do you think it’s beautiful?
I told her that I did.
“I really like the colors. The grapefruit is my very most favorite.”
I told her that I favored the lime, unable to hold back a smile. I watched her a little longer, as she sat there happily admiring her small collection of fruits, gazing at them appreciatively as if they were some prized trove of valuable treasures. I am always very grateful for the innocent, effortless ability of children to make you stop and appreciate the little things in life, the simple moments of beauty that might (probably would) pass you right on by otherwise. I need to do more of that in my daily life, as little Elle does; appreciating and seeking out the special in things … finding wonder in the everyday, uncovering the magic in the mundane.
She started smelling the fruits at this point, delighting in the bright, fresh scents offered up by their vibrant skins. “Mommy would you like to join me? I’m going to make a pie.”
I sat and joined her in her make believing, enjoying her enjoyment. The laundry, and the cleaning, and the emails, and the cooking … it could all wait. It should wait, in fact. Some things are just more important.
A couple of weeks ago, on a slightly warmer than usual Friday afternoon, I went for a run. I was annoyed that my music wasn’t working properly. I was frustrated that the pants I’d chosen to wear didn’t fit me properly – didn’t feel quite comfortable enough that day. I was agitated that some road workers were blocking my exit from our street, causing me to have to try a different route. Silly, unimportant frustrations, they were. Pointless wastes of energy, as so many of our daily aggravations tend to be. As I rounded the corner of our driveway, breathing heavily and slowing to a walk as I headed toward home, I pulled out my phone and opened FaceBook, planning on posting a photo … or something. I don’t really remember. The very first words that appeared on my screen, however, brought me to my knees. My legs sort of gave out and my formerly heavy breathing came to a prompt halt … my previous frustrations suddenly seeming so trite and silly. The news that a three-year-old little boy, named Luke, had passed away after a fierce and brave battle with brain cancer made me stop in my tracks. I’d been following his family’s story for months, awe-inspired by the freedom with which they shared their struggles and amazed at how truly impacted I was by it all.
For the past couple of weeks, since I learned of Luke’s very, very untimely passing, I have carried a persistent feeling of responsibility to do a better job of being present in this life – to live it with my eyes wide open in appreciation of all that I have – for my children, for my family, for the sweet little boy who managed to inspire and move so many, and who was taken from this world much too soon. About a week after his passing, Luke’s mother Sheila (who is from the same tiny corner of the world as me), penned a letter to all of those who had followed along on their journey with Luke, and (with her encouragement) I felt compelled to share it. Its themes are universal, its message clear, simple and utterly important: Love as hard as you can. Laugh as much as you can. Seize the moment. Be present.
Luke lived every single second of his life from the very moment that the sun rose (or usually before) until he could hardly stay awake at the end of the day….vivaciously, energetically, zestfully – literally devouring this world and taking it all in…the very smallest things and the very biggest things … not wasting a minute and being present every single one of those. Seeing EVERYTHING as a MIRACLE and something to be touched, savored, run over, run around, climbed on and just, frankly, loved.
Her description of Luke reminds me of my Elle, who is also three. She lives her life in the exact same way and we could all take a few cues from these little ones. We all should. They’ve got it – they know the secrets to living a happy life, and they practice it daily. I saw it in Elle’s face as I watched her admiring that silly pile of fruit. She was amazed by it, besotted by the thought that something could be so beautiful, and so delicious, and right there for her to touch. “Seeing everything as a miracle …”
I strongly encourage you to take a few minutes to read Sheila’s note, which I’ve copied below. The courage and support and constant love she and her entire family showed throughout their nightmarish ordeal was one of the most inspiring things I’ve witnessed. It has, without question, helped me become a better, more present mother … a more appreciative and thankful person. I am just one of many who would testify to this truth.
You do not need to know someone personally to care a great deal about them, to be affected by their struggles and to fill your thoughts with the hope that they will be okay. I have never actually met the Ungerer family – never got to introduce Elle and Easton to Luke and his little bother, Will. But sometimes you can feel a connection to people in ways that don’t necessarily require you to have actually made their acquaintance.
So, this sunny, bright and happy cake is for you, little Luke. You were clearly a remarkable and brave little boy who made such a lasting impact on the world in your lifetime. I’m sure that I am speaking for many when I say that seeing your sweet smile made it impossible not to do the same. It could melt an ice cube from a long ways away.
It is hard to believe that I am actually drafting this message to this group of people. A group of people made up of our family, our very dear friends, so many awesome acquaintances and friends from all eras of our lives, and so many people that we haven’t had the opportunity to meet in person, that we don’t even know but who have been there for us in a way that has been so important and sustaining. Luke did a great job every single day of his life, we have been proud of him every minute since we knew he even existed inside my body. We loved him and cherished him and always, always, always will. We cannot believe that he isn’t here and we are so sad.
We want to be sure to thank you for being such a supportive, loving, positive and kind Army of support – Luke’s Army. Before this nightmare began and through it, you have all helped to strengthen us and helped us to keep walking (or crawling) forward, baby step by baby step, minute by minute. The slightest touch points have meant just so much to all of us and we’ve gone back to them time and again.
We are just so sad, sort of in disbelief, sort of numb, feeling a lot of different feelings since our sweet Luke has been gone for almost a week. This has been a long haul and I just find myself thinking often of how yucky (to put it extremely lightly, really more like really terrible) he’d been feeling for quite some time in his short little life, how I feel so sure – dare I say somewhat relieved – knowing that he is no longer suffering and in pain and living a life that was so far from the life that he wanted to live – unable to use his right arm since July or so, lately unable to walk and having a hard time talking, seeing, and just a hard time in so many ways, sleeping so much, crying out and sometimes screaming with pain, and dealing with lots of intense medicine. It is a sort of mercy – of which we haven’t seen much in the past year – in that I know he is not hurting any more. We’ve known for a long time that this was a possible (likely) outcome. Were we prepared…?? No – that doesn’t sound possible. But we’ve had a lot of time. He had been attacked by such a dangerous, aggressive and horrible disease, just completely out of nowhere. And we had many months to just be together and be as happy as possible – Luke ate just about exclusively homemade chocolate chip cookies and milk in the last few weeks and, some of you may not even know, but we had spent last Tuesday at Disney World’s Magic Kingdom, which was a very happy day for all of us – Luke just lighting up with excitement when he would see a favorite character, practically jumping into the arms of Mr. Incredible and Mickey Mouse. He even rode his first roller coaster! We truly were living in the moment in a way that we never had before and it was life changing – living in the moment and effortfully not thinking of the past nor thinking of the future – taking life one day at a time, one hour at a time. I can’t emphasize this “lesson” or drastic life change that we have experienced enough – being present and working to be in the very minute we were experiencing. Scott and I joked that we weren’t really willing to plan beyond the next five minutes or so. There is so much good to living like that – it sure is how little kids live! Now….to continue that when just about all we want to do is look at pictures and videos of Luke, reminisce and stare in awe at how he was only just beginning – he was truly like a little, beautiful flower opening up into his very own, growing and evolving person…. – and we feel so sad and weird and reluctant to smile with Will. How can we figure out how to continue to live like that moving forward? How can we sustain and take some of the “good” that we’ve learned from this horror? Wouldn’t that make it less horrible. Minute to minute learning and trying to be in that minute to minute, to savor and eat up every single minute that we can, in the way that Luke did when he was healthy and even when he was feeling so sick. Luke lived every single second of his life from the very moment that the sun rose (or usually before) until he could hardly stay awake at the end of the day….vivaciously, energetically, zestfully literally devouring this world and taking it all in…the very smallest things and the very biggest things..not wasting a minute and being present every single one of those. Seeing EVERYTHING as a MIRACLE and something to be touched, savored, run over, run around, climbed on and just, frankly, loved. He loved life!
I will also likely share more about this but I want you to know that Luke passing away last week was so peaceful and calm. The last words he heard were words we repeated all day long, every single day – I love you, I love you, I love you. I’m proud of you. You’ve done such a good job. It’s so important to me that he knows that we were proud of him. That he had done a good job every single minute that he was in this world with us. That we loved him more than we could ever figure out how to tell him. That he absolutely was the light of my life. It was around 4:30 in the afternoon in Florida at a place called “Give Kids the World” where we were staying on our “Make-A-Wish” trip and we were out on the porch on cushions, in the sunshine and light breeze. I think God wanted it to be there instead of at our house. You all know how much Luke loved to be outside and it was truly a beautiful day. My parents, Scott’s parents, Will and Scott and I were with him at all times that whole day. He was really surrounded by love.
We’ve made so many hard decisions, needless to say, across the past ten months or so. One of the hardest lately has been deciding what kind of ceremony to have for our baby. We’ve decided that we are going to have a small, private gathering at our church here in Indianapolis with our parents and siblings this Saturday. So many of you have reached out and want to help – help us in any way, help us grieve, show us love, be with us, be there for us. And, I will put the caveat that we may need you in the near future!! And we do truly hope you will be available for us! But, most of all, we’ve decided we have some very specific requests for you:::::
– Love your babies! Love your families! Love all the people in your life!!! Seize the day! Be in the moment! How easy is it to get caught up in this or that – it’s human nature – but, though this is intense, I ask you to think of Luke, to think of us. If I could listen to Luke talk and talk with an adorable, creative story (about “a knight…and a princess..and moonies – they’re not scary, they’re our friends…”). If he had a preference about wearing his “favorite shoes” or eating whatever or any of the daily challenges….to be concerned about brushing his teeth or how we are going to coordinate swim lessons…obviously what we wouldn’t give for these to be our thoughts, our worries, at the front of our mind as we go about our day. One of the most horribly sad thoughts any of us can have is just all of the things we will never be able to experience with Luke in this life in this world. When we were dressing for his “graduation” from the Proton Center this summer (something we are so grateful they do there!), it certainly crossed my mind that this may be the only “graduation” that we have for our amazing and wonderful boy. To think of what he was on the verge of, to think of the pleasant and even unpleasant things that were to come in our lives together, well, it’s obviously just one of the most heartbreaking things about this. Absolutely breaks my heart into tiny pieces and makes it so hard to imagine walking forward in this world without him. So, how can we all live in the moment and be grateful for it and keep that ever-elusive perspective about life and love and what matters. We will desperately work to raise Will with this in mind every hour and I hope that you can with anyone in your life – talk, play, love, be in that moment. Please don’t forget Luke. Try to wake up in the morning and GO! and have fun! and live! and laugh!
– Love – I’m so thankful that I got to spend so much time telling Luke how much I love him, how much I’ve always loved him, how much I always will love him. So often! He’d say – “I love you, too, mama” or “I know you love me so much!” One of the hardest parts of his illness lately was that he was sometimes so uncomfortable we couldn’t “snuggle bum” in the way that we usually had and he wasn’t wild about me being all over him with rubs and hugs and kisses – but, believe me, the love was just saturating every single room. If we did nothing, we tried so hard (at so much, really, these months) but oh my God we showed him love! We’ve gone through such a dark time and, as each of you have been for me every day, there are lights in the darkness. That whole thing of not knowing what someone else is going through – geez! But, a smile and someone making things easier for us in any way sure has gone a long way – you have NO IDEA what the person on the other end of the phone or in the car or at the restaurant or airport has just dealt with – NO IDEA! What if you could make a drastic difference in a major experience in their life? With minimal effort? Or a lot of effort? I know my Luke brought so much light and energy and vitality wherever he went and was just so sweet and kind and just smiled. I know that he put love and smiles and positivity out there and I hope to carry on that way in his legacy for the rest of my life. Honor Luke and our whole family in that way – please, please, please let the positive ripples that you can acquire from any of this spread far and wide in ways that we can’t imagine. Please, please let good come from this!!!! We are desperate for this to be a reality. Truly desperate.
– We are also going to be providing the name of and link to a pediatric cancer foundation for people to contribute to instead of flowers or some of the costs that might have been incurred traveling to Indy, etc. If we could prevent this from happening to anyone else, that would lighten this heavy, heavy burden and sad, sad, sad, sad loss for us. We plan to donate the remaining funds from our Giveforward campaign to a pediatric cancer foundation as well. We aren’t clear on it all yet, but it does appear that pediatric cancer, especially such rare cases as Luke had, are incredibly underfunded for research, family support. etc. I anticipate this becoming part of my life’s purpose, helping to eliminate something like this in the future. When we watch those videos of even the days before Luke’s first seizure, we are absolutely in AWE of his seemingly total and complete HEALTH! Out of the clear, blue – super, super blue – sky, this happened in his otherwise perfect little, just-turned-3 year old body! OH my God how you never know what tomorrow is going to bring. Let this be one of the most explicit examples of this hard reality – going from the healthiest, happiest, most lighthearted and silliest of days, to the darkest, most hellish place in one’s mind. We don’t understand and asking why is a really slippery, slippery, rough slope. Nonetheless, we all know and aren’t we thankful that there are smart beyond smart minds working tirelessly and selflessly (we’ve come across MANY, MANY of these) to figure things out, to prevent, to understand, to HELP. A small donation from every person in this Army? Well, that’s an impact. That would be a huge impact.
Loving and enjoying (what an inept word to describe our feeling – infinity beyond enjoying!!!!) and caring for and, now, so sadly, losing Luke – this is now all a part of our life story. But, we are still writing our story. I don’t know what the future holds but I know this – I am thankful for you and I am thankful for good things, and I truly still see them, even today. Luke was a gift to me every minute of his life. I would spend these ten months filled with fear like living in a horror movie, sadness that I’d never seen in my life, so much crying, uncertainty, confusion, sickness and so many terrible things all over again because I had so many WONDERFUL, perfect, surreal, beautiful, silly, funny, interesting, happy, happy, happy, happy times with Luke and because of Luke. We will see him every day – in a beautiful and free coyote running across a field near our house, in the sunshine through the leaves of a tree when we look up in the summertime, in a cute little squirrel that comes up to say hello, in the words and actions of his little brother, in our dreams and in our minds and hearts all the time.
Please – – if you could share a picture, specific memory or general anecdote – ANYTHING – about Luke in any way, shape or form, that would help us so much. Anything – big or small – would be so meaningful.
Thanks for sticking with us so far and please stick with us – we are going to need you in the weeks and months ahead. Thank you for being such a amazing Army of love and support. We will always cherish you and be proud and thankful for Luke’s Army!!!
PS – I want you to know Will is doing ok. Across the past months, he has gotten used to Luke “sleeping,” or “feeling sick” and even being away at the hospital for days at a time. It’s hard to know to what extent Will understands – he turned 2 in October – but I know he knows Luke is not here and has looked for him, thought he heard him etc a few times. When we were flying home from Florida, I could tell Will was a little anxious and we had a fascinating and beautiful little conversation that I wanted to share with you. I squat down and say to him – “it’s ok. Luke is ok. Don’t worry about Luke. He’s not with us here now anymore. He’s gone. But he’s ok. It’s ok.” And Will says, with such a look of empathy, “He was sick. He went home.” I said, “Yes, he went home. He is safe. He was sick but he’s ok now. He feels better. He’s in heaven now.” and Will says, “They’ll fix him.” Later, on the plane there was a baby crying really loud and Will goes, “Luke! It’s Luke!” and I said, no, that’s not Luke. That’s a different little boy. And Will said, “Luke is with Jesus.” You guys – I hadn’t used the words going home, or being fixed or really said much to Will about Jesus (to Luke, yes, but not Will yet!). Some things do just appear to be beyond our understanding. In fact, just yesterday Will told me “Luke is in a castle with Jesus.” – what a good thought. Now I pray for peace and figuring out how to miss him and love him and keep him with us while also learning how to smile and play and live without him. Love you guys. xoxo
* Please feel free to forward and share this – we have so much gratitude toward so many people.
* Carpe diem
Citrus & Olive Oil Cake with Lavender-Thyme Glaze RECIPE
1.5 cups sugar
1.5 teaspoons vanilla extract
5 ounces lemon curd (typically sold in 10-oz jars)
5 ounces lime curd
The juice and zest of one orange
1 tablespoon grapefruit zest, plus the juice of half a grapefruit
1.5 cups olive oil
3 cups flour (all purpose)
2 tablespoons baking powder
1 teaspoon kosher salt
1 3/4 cups confectioner’s sugar