Update

Many of you already know that Lukie passed on November 27^th and on Friday November 30^th we laid Lukie to rest.  Thank you for all of the love, support and generosity you have shown our family, you have shown Lukie.   

Below we wanted to share with all of you the words we spoke for Lukie during his eulogy...

Supernovas are intense, bright and shake the cosmos, but as powerful as they are, the can only exist for a short time. Yet the effect they leave behind lasts well beyond what we could ever comprehend. They are both explosive & disruptive close by, yet also subtle and far reaching. A supernova…. I can think of no better way to describe Lukie & his life. Luke brought with him a light that could not be contained and effected those close by and those far away in powerful ways. To some he was an inspiration, and others, helped to inspire him. To some he was a fighter and others he was a patient to be cared for. He was a jokester, a prankster who found joy in making others smile, sometimes at our expense, but never in a way that was meant to injure or harm. Lukie was stubborn, oh Lord was he determined to do things the way he wanted them done, and no one was going to tell him - or persuade him - otherwise. Luke was passionately protective of his family, and even as a child he was prepared to do whatever he could if he felt like someone or something threatened those he cared for. One of his most dominate qualities was his kindness, which shown through as he always seemed to care more for others than he did for himself.

I don’t think I know right now everything that Lukie is, which for some of you might seem like an odd comment. Yes, he is no longer with us to hold, to touch physically, but I assure you he is still here. I know this. I feel this. And it isn’t just the hopeful thoughts of a parent who is missing their son, it is something I can tell you with absolute certainty. In the immediate days after Luke left this world for the next, our family has experienced moments, that thanks to the lessons we learned over the past year, we didn’t miss, we didn’t let pass us by. Several come to mind, but I want to mention two specifically.

The first I want to mention was one that showed us how much he cared for his family, how he would go to any lengths to try and protect us and make us smile. We had to do lots of things this week, but even with the tasks we had to do, we still needed to eat. We went out to lunch Wednesday and got a table at one of Luke’s favorite restaurants, the Cheesecake Factory. Getting a table to eat… a simple enough activity, but it held something that on our way to the restaurant I know I didn’t think about specifically, but it was something in that the moment we spoke with the hostess was front and center in our minds – we asked for a table for four. As we made our way to the table we saw we were to be seated at a smaller 4 top, which was not the large booth we were accustomed to, you see a party of five just doesn’t fit at a booth made for four… especially when daddy is a tad bigger than the average bear. Nancy and I didn’t say a word, but we were thinking the same thing as we looked at each other and the girls scooted into their seats. A moment later, I excused myself and went to the bathroom. Christmas music was playing, I didn’t know the name of the song, but as I washed my hands and looked in the mirror, I heard the final lines, “Oh there'll be no more sorrow, no grief and pain, and I'll be happy, Christmas once again.” I stared at myself in the mirror for a moment, exhaled and walked out the door, feeling saddened and not quite complete, thoughts about a table for four that was much, much too small that it was supposed to be. As I turned the corner, I heard a saxophone, recognizing quickly the unique hook that started the song “Cheerleader” which is one of Lukie’s favorites. I looked at Nancy, smiled and she did too… comforted by the joy that song represented, the memories it elicited and a newly minted soul in heaven that seemed to be taking care of those he cared for.

That alone could have been chalked up to coincidence, a happy bit of chance that resulted in a smile.

But Lukie hadn’t just picked that one moment to let us know we were being watched over.

You see earlier in the day we had to spend some time at the funeral home, taking care of things that had to be taken care of, things we never imagined would be part of our lives. One of those things was going over some items we had brought with us and wished to be placed with Luke. We had decided Lukie was to be buried in his K-9 uniform, the exact replica of what members of the K9 unit where daily, which was given to him in the springtime and we had brought with us, but we also had several other items that were uniquely Luke. One of those items was his pocket watch, his Batman Pocket Watch. I have a pocket watch that was given to me by my parents many years ago, much like my brother James. A tradition started by our parents, one he has continued with his sons and one I intended to carry on with Luke. Luke had found it one day and said he wanted one of this own. Well…. He got it… and he loved it. As Nancy, Amber, Lucy and I were sitting there talking to Rick the thought came to me that I should set it to 5:03, the time Luke went to Heaven to be with God, to be healed and to live a life everlasting. It seemed like the right thing to do and I walked over and picked up the watch. I opened it and attempted to move the hour and minute hands to the right positions. I say attempted because while I could spin the little nobs the hour and minutes hands wouldn’t move that much. In fact they hardly moved at all. As I looked down, I saw that I could manipulate the time between about 8:34 and 8:55. I tried a few more times, but it wasn’t working, the hour and minute hands were being stubborn. Despite all I was doing it seemed things were not going to be done the way I wanted them to, I wasn’t going to be able to persuade things to happen otherwise. I smiled and laughed a little right then, and thought Lukie was messing with me. Nancy looked over to me and said, “when was Luke born? It was nighttime, right?” I couldn’t quite recall the exact time at that moment, I did know it was at night, but it wasn’t until late yesterday that I was able to get the answer to that question. I was retelling this story to a dear friend of ours, when I got up and walked into the other room and grabbed Nancy’s file of “important stuff” that held all those things she is smart enough to not let me be in charge of. I found the birth certificates, first Amber’s…. then Lucy’s…. then finally I found Luke’s. I looked closely and was elated, but not surprised, that Luke was born on August 22nd, 2011 at 8:50PM. Say what you will, think what you want, but I think Lukie was messing with me, and he wasn’t going to allow the time he ended his journey here on earth to be the one that was on his watch, it was going to be the one in which he was born into it… and it reads 8:50, and always will.

We are here today to honor Luke, to celebrate his life here on Earth, but we believe… we know his journey has not come to an end. It may have ended here on earth in bodily form, but he lives on with Christ in Heaven, and in the little moments, that if we pay attention, we will feel, we will experience. I posted yesterday that Lukie didn’t like it when Nancy got sad. He would say “Mommy!... don’t be sad, sad is boring.” We are sad, to say otherwise would be untrue and deny what we are experiencing. But we aren’t sad for Luke, we are sad because we miss seeing his glowing smile. Feeling is hugs. Watching him pull pranks on those he loved. But, we think we’d be letting Lukie down if we were boring. We asked everyone, maybe a little late, to wear bright vibrant colors today. To wear orange if you had it. To celebrate Lukie’s life. So today, and in the days that follow, when today may begin to fade from your daily thoughts, be bright, be kind, laugh, and know that is what Lukie was trying to teach us while he we here with us and is still teaching us. Lukie was our Nugget, but as I wrote this it occurred to me he wasn’t just ours, he was meant to be something more.

A Supernova.

We love you Lukie and we’ll keep on Expecting Miracles both big and small every day 💛🌻

#Supernova #ExpectMiracles #Faith #Hope #Love #850 #Gratitude #K9-1

Update

Over the past few days Nancy has had to have conversations no mommy should ever have with her 7 year old son.

On Monday, while I was out with Amber at her tutors and then off to pick up dinner, Lukie and Nancy had this conversation...

Luke "wish people could come back after they die.
Nancy "why?"
Luke "because I don't want to die "
Nancy "do you think about that "
Luke "yes I'm scared "
Luke" you can't eat or sleep in heaven"
Nancy "you can do anything you want"
Luke "this is getting annoying"
Nancy "what?"
Luke "the sick"
Nancy "Luke do you want me to get books about heaven "
Luke "Yes"
Luke "I just want to forget about die"

Today, as I made Luke's breakfast, Nancy came upstairs with tears in her eyes and said that Luke didn't want her to kiss him because it made him think of Heaven. I hugged her with tears in my eyes, knowing how much that had saddened her. Nancy had to live with the thought of not being able to kiss her son for about 45 minutes, until she asked again if she could give him a kiss. Luke said she could kiss him on the lips, but not his forehead because that was what made him think about Heaven.

Luke hasn't been active the past couple of days, as his ability to walk is severely challenged, with his right leg not responding to what he wants it to do. He hasn't been able to play Xbox because his right arm and hand are also limited. He keeps trying though, last night he walked (with difficulty) for a few steps and said, "see, I can walk" with a sly smile and what was a sense of achievement & pride. He is still positive, but his limits are being tested.

Last night we had visitors as Carrie Bohrer & Melissa Mollet stopped by to bring by some dinner from Sardi's and to also drop off the very generous donation The Office Charity Foundation had raised for our family. A month ago when we were at the dinner at Montgomery Country Club to wrap up The Office Charity Foundation's 4th Annual event we were overwhelmed by the outpouring of love and generosity Luke & our family was blessed with. We hope to one day be able to do the same for others with Lukie by our side.

We're working to stay positive, despite seeing Luke struggling. To say that is an easy goal would be untruthful and misleading. The past week in particular has been challenging for Nancy & me, watching your son endure the changes his body is dealing with is a struggle, but not nearly the hardship Luke goes through, and it is because of that we do our very best for Lukie, for Lucy, for Amber and for each other.

Luke just said, "I'm bored. I'm a kid and I like to do kids things." So we're going to try and play Xbox again together. Luke's always leading it would seem, the lesson... Never give up 🙂

Please take a moment today to think of Luke, pray if that's your path, send positivity if that's your way, whatever it might be, if you could do that we would be grateful. Keep Expecting Miracles both big and small every day love yah XOXOXO 😍

#LukesSquad #ExpectMiracles #DefeatDIPG #Faith #Hope #Love #NeverGiveUp

Update

Life keeps on moving forward, we keep on keeping on…

We got a fly by visit from Officer Chris and Officer Dom last week. It's always great to see other members of Luke's K9 unit 🙂

On Thursday we sat down with the kids to talk about going to a funeral on Saturday for their GiGi, for their great grandmother. We spoke with Luke first, can’t exactly tell you why, it just seemed like the right thing to do. We tried to explain what a funeral was, of course Luke said, “oh, I’ve seen those on TV.” I said, “well what is a funeral Lukie?” to which he replied “it’s when we say goodbye.” I agreed with him, said it was a special time when we get together and say goodbye to someone we love. Luke sorta smiled, agreed then softly said, “I’ll help you tell Amber and Lucy” which was one of those moments when you kind of just feel so proud and feel so much love for the kind of person your child has become. Amber got a little upset and started to cry, because as Amber said “I don’t want anyone to die, I don’t like it.” How do you try to explain this to a child? to make sure they are able to process what has happened, to make some sense out of something, that even as an adult coming to grips with is challenging. We said, “honey, GiGi lived a life where she was loved by many, but wasn’t able to live the life she wanted anymore and now she’s in Heaven surrounded by all those who have gone before her.” It’s certainly not an easy conversation, but being honest and talking to what we believe and not avoiding difficult conversations is something this journey has taught us again and again.

On Friday, Nancy and I were able to get out for a few hours in the evening and Nancy’s mom Bonnie watched the kids. Somewhere during the evening Lucy, Amber and Luke were playing in our room (likely in his fort) and Bonnie said he came out of the bedroom sobbing. He was upset, he was crying and Bonnie asked why he was so upset and Lukie said, “I don’t want to die.” Bonnie of course started crying when he said that and she told Luke no one wants to die and we don’t know when our time is, we live the best life we can. Lucy and Amber then proceeded to dance, place hats on his head and act silly in a combined effort to make their little brother happy. He was still a little upset, but started to smile and then said he wanted to say something. It took a minute for everyone to calm down and when the did Bonnie asked what it was Lukie wanted to say he said, “oh, I forgot” and seemed to be better. Whether Lukie was upset because of GiGi or if it was him thinking about his own battle I can’t say. Nancy thinks he tries to protect us, but it's so hard to be sure. He said tonight when I asked him about Friday that he didn’t want to talk about it and he was upset because of GiGi. The funeral on Saturday was a special event and there was even a short healing prayer done for Luke during it, which made the day all the more special. Afterwards as we walked out Luke said, “that was a nice funeral” which was sweet. We are going to miss GiGi, but having a chance to celebrate her life with family and friends was special and we are at peace knowing she is at peace now.

We had started our Sunday by going to mass and Lucy, Amber & Lukie all took Holy Communion together. After mass we were getting ready to leave, and if you have ever been to St. Peter’s in Olney, you’ll know there is a large square basin that holds holy water in it. It is about 4 feet by 4 feet and is about 2 feet deep. Kids being kids they looked at the water and I could see the wheels turning in their heads, with thoughts of plunging their hands deep into the water. A moment later, Father Kalita walked up and said, “Luke, you know” and he paused then continued with a smile “the really holy water is at the bottom.” A big grin on Lukie and Amber’s faces was immediately followed by arms reaching to the bottom, pulling them out soaked and I quickly told Luke to go ahead and put his hand on the back of his head. He looked at me with a face that seemed to say “why would I do that” and I answered his unspoken question by saying, let’s get that holy water near that tumor and kick it’s butt. It was a cute moment, one of those wonderous kind of things that makes your heart grow a little watching. While I knew Sunday held another family event, I hadn’t really paused to think about the way life sometimes seems to try and bring balance about. Saturday’s funeral was followed up by a baby shower on Sunday for Luke’s cousin & godfather James and his wife Diana, who are expecting their second baby girl. Nancy was busy working, as she had to move all of her clients because of her grandmother’s funeral to Sunday and the girls were off to a birthday party and sleepover, but Lukie and I got a chance to hang out with family for several hours at my brother’s house. Good food, good conversation and just generally hanging out, all of which we enjoyed.

Late Sunday night Nancy found herself looking at pictures from a year or more ago, before Luke started this journey. Seeing Luke healthy, untouched by all of the challenges of the past 11 months can be a really hard thing to do and it brought tears to Nancy’s eyes. Remembering him running, playing and jumping around, seeing his smile unaffected by what was to come, what would change our lives forever, is a lesson that helps us to savor each moment. Luke came wondering into the bedroom at just that moment and mommy asked Lukie if he’d say a quick prayer with us. He gave one of his usual, casual “sure” responses. We then all held hands and Luke said, “God stand in our hearts to show us the way of life.” Bits of Lukie wisdom wrapped in a perfect moment.

Later after mommy got in trouble for hiding Luke's remote (ok she didn't hide it, but Luke and I did look all over his fort for it only to find it in mommy's nightstand drawer) Nancy asked Luke if she was in trouble or going to have fun with him, and Luke told her "oh, you're getting a funishment" 😁😀😆

Monday we visited Dr. Harry and got our teeth cleaned and also received some Georgetown Cupcakes for Luke’s birthday from Harry and the staff. Anytime you get cupcakes at the dentist’s office you know you are getting thought about in the best of ways. Thank you everyone at Dr. Harry Gildenhorn’s, you all are the best!

So we’ll keep praying that God stands in our hearts to shows us the way of life and we’ll also keep Expecting Miracles both big and small every day XOXOXO

#ExpectMiracles #LukesSquad #Faith #Hope #Love #Gratitude #Family #GiGi #Funishment