One Single Moment…

A single click of a camera can catch one single moment, a moment that is actually a million moments all squished together. That one single moment is flooded with history, pain, loss, joy, celebration, smiles, tears and gratitude. Just one shot, one single camera shot… one moment but really a million.

20180428_184121.jpg

This picture would have looked so different only a couple years ago… there would have been slightly shorter girls with no hair and fancy headbands. The dresses and smiles would be the same, the joy would be the same but the moment would have looked so very different. These are the survivors, a set of girls that kicked cancer’s ass. In that single moment I can see the other million moments. If I could have orchestrated this picture you would see many more heads watching and celebrating the end of treatment for one of their teammates. The room was filled with survivors and fighters rallying and enjoying this joyful moment, a moment with a million moments included in it. It was a moment, laced with a million moments that I will never forget.

Emily finished her treatment a short time ago. She and her family wanted to celebrate the journey, all the parts of it. They honored the hard and celebrated the light and gifts. They made it- through all the pain and steroids, the stress and kindness, long stays and missing normal… they made it to the big celebration. They made it together and you could feel the tight family bonds they have. It was a blessing to see and share in that moment.

I was honored that Maddie’s Mark could help with Emily’s celebration, and so very impressed with Emily’s family’s party planning skills. I had only a few roles but am honored that Madeline helped rock that night. It is a gift to get to help families enjoy experiences and moments, in Madeline’s honor. I get to share her and feel her right there- in those moments with a million other moments laced in them.

I felt that last night as I took the picture, it was like levels of moments being caught in one moment, one single click of the camera. On the dance floor the guest of honor, Emily, then her crew of survivors- her teammates. In the background was the one who captured the moment from a distance- knowing that my daughter may not be here to watch up closer but she instead stays on the edge and joins in the celebrating. She stays back with the photographer, her role is different in those moments.

Try to stop and take in one single moment… look at it for the million moments in that one single moment. Store it in your brain, think about all the layers. Those layers and million moments in a moment are life, all of it in it’s most raw form. I am grateful today for the moment I got to be a part of, for the million moments laced in that one single moment.

Emily and her family enjoyed their best night ever, it was almost a tangible celebratory energy. We all loved getting to be a part of her one million moments inside that one single moment…

Advertisements

What a busy and blessed week…

This was one of those weeks that I remember how grateful and blessed I am… and now I am also super glad when I can finally sit down and enjoy some peace. So now I sit in the peace and reflect on the light and feel grateful that I have no plans today.

Monday started with a generous and well-organized check presentation. I was impressed with Blue Cross Blue Shield’s kindness and employee’s dedication to important local charities. It was pretty special to be honored alongside The Ronald McDonald House, Double H Ranch, Things of my Very Own and a few others. I felt very honored and happy in that room. I even got some Starbucks coffee and a little adventure in a real office conference room- things that don’t happen too often in this lady’s life.

Wednesday was the 6th Anniversary Party for Maddie’s Mark Foundation… only my favorite night of the year. This event is a special night at one of my favorite local restaurants, The Point, they shut down and the only people attending are believers in Best Day Ever’s… so it kind of rocks. I was actually early this year, I was prepared with all the items to make the event work and share just how I had imagined. It was impressive, if I do say so myself. I did not make it long in my heels, I had some fresh blisters from lovely flats I wore to work that week. So… I opted for staying a little short for the night, and to be honest my feet have thanked me over and over. I got to see so many people I miss most of the year, and dance until it was time to go. There were moments that were uncomfortable, not really the way things should have happened, but all and all it was a spectacular show of support and love to Maddie and her legacy.

The energy of the space at The Point is exactly how I feel about the foundation- it is warm and welcoming with a few long beat up farm style tables that remind me of family dinners growing up. It is the kind of table and space that says “sure we have a spot for you” to anyone who needs it. It feels more like a home than a venue, and for that it is the most special space for this event. We are honored every year they allow us to host our herd. I love the point in the night that the Vinny, the DJ, hands me the mic and I get to talk and share. It is my favorite, it always reminds me that I want speak and share and talk more often. I feel compelled to do it, and I feel so full when I am done. I hope God has speaking in my plan, I super hope that someday I get to do a TED talk- that is my dream. I spoke that night about gratitude. I have dreams sometimes, not the kind like wanting to someday speak at a TED event, but the kind you have in the middle of the night. Sometimes those dreams do.not.make.sense… sometimes those dreams tell me what I should share or do- ideas for Best Day Ever’s, speaking points and directions I should incorporate into my life. I woke up one day with a strong feeling that this anniversary really express gratitude to our herd, donors, volunteers and beyond. I felt it. I saw it as I spoke. I even got to bring up some of the families we have supported and honor their journeys. It was special…

It was a night I saw so many be happy and silly and content and loving… it was just right.

So then came Thursday… my baby sister was here and we had some time to spend together with the girls. We watched a bit of Ferris Bueller and then wandered into Albany for an adventure. In true life for though, Molly headed out and we had an event at school to do #MaddiesMarkRocks and speak about service for teens and families. Even in my tired state the girls, some middle school volunteers and I got MANY rocks painted to be send out into communities and give the gift of a smile to finder and share Maddie’s Mark…

Funny thing is- Friday was Earth Day at the girl’s school… so Friday I got to teach many 3rd graders about plants and how freakin’ cool they are. I think when they got to touch a Venus flytrap and KNOW that plants eat bugs or see a nice long stick of bamboo they knew plants.are.cool. Well at least I hope so…

Now came Saturday- another #MaddiesMarkRocks event. I got to go to the YMCA and paint rocks with kiddos there. It actually wasn’t as easy as I thought it would be…

It was one of those mornings that I could see the girls way back when, when they would have been hanging their coats on those racks with their tiny backpacks. It doesn’t feel possible that the years of preschool were so many years away from today. Days move slowly and years move fast… that is definitely the truth. I watched little ones come up and paint rocks, I talked to their parents a little about Maddie’s Mark. I had 3 adorable little girls come up to me SOOOOO excited, because it was #MaddiesMarkRocks… and they were called Maddie. They each assumed the station was just for them, it was cute and crappy. Thankfully they can’t understand the crappy part, that is just something I have to carry with me. Cute right next to crappy, joy next to pain- tis life as I know it to be. I guess I just didn’t expect it…

I placed my rocks at Maddie’s Garden right next to Maddie’s Place. I sat quietly until my Uber came (my car was getting some new brakes from an awesome friend). It was like go, go, go, go, go… then all the going was done and I could just sit. Sometimes weeks are like that, sometimes they aren’t. I can say having a nice Sunday to catch up on things is nice. I also know those amazing go, go, go times are invigorating and exhausting. Usually they are chock full of Madeline and history and moments I get to share and meet new people- all of my favorite things. I will take this quiet Sunday and feel that powerful gratitude and fullness that those busy weeks gift my soul.

All the feels in a busy week, that’s the life of this momma, president, sister, friend, organizer, special ed staff, taxi driver, writer, speaker and all the other parts of my life that make it pretty damn good.

 

Love and Lola…

There is love in the suffering… right inside the ugliest and most painful parts of our lives there is beauty, there is love. How could we know love without suffering? Sometimes I think about the times in history that so many lived and died in, how common suffering was. How people chose to suffer to find real and beautiful and safe. How sometimes suffering was just a part of life… and people adapted and found beauty in the simple. There is beauty in suffering… you just have to really look.

God does not waste any of it, not suffering, living, smiling, joy, pain… tears. Every single piece of our journey, every thread woven into our lifes tapestry is meant to be there. What if our tapestry is smaller than others… what if there isn’t the time in our life to have the immense tapestry that some get… what if instead a life’s tapestry is smaller- but so beautiful? What if the suffering and joy woven into that little tapestry is bright and dark and intricate and full? What if not all tapestry’s are meant to be huge to be the most beautiful and loving and painful and full tapestry’s?

Lola was lovely, simple, real, joyful and beautiful. Lola embraced her suffering, she saw the beauty, grace and dignity of her pain… she lived. She made her own choices- difficult choices in the light of her diagnosis of DIPG. She chose to use her time here to help doctors understand and know DIPG better, to help aid the trials to do better attacking the tumor… ultimately, she chose to let doctors learn more about her tumor and terminality while experiencing more pain, more suffering because of it. I look at Lola and see a martyr. She is not only a Martyr for DIPG research and those children who are sick, but she was a Martyr for her faith. She never let anyone leave her presence not seeing the light that God put into her, the faith she had. She suffered, she endured, she shared her humor and faith until her soul left her body. There was love and beauty in her suffering. There is love and beauty in her medium size tapestry…

On Monday April 2, 2018 Lola Munoz left her suffering body, she left her tapestry finished tapestry, and she joined Jesus. I can only imagine that Jesus gave her a high 5 for the work she did here, that He was so proud of her. I know He doesn’t enjoy that suffering, but man does He appreciate the suffering and the beauty. He knows the beauty in Lola. He knows the simplicity and joy and honesty she exuded in her days here on Earth. I have no doubt that when Lola entered heaven Jesus told her she lived well, just right. She did.

She made such an impact on my heart, body and soul. Lola was, what I can imagine Madeline to be like 7 years older than when she headed to heaven. Compassionate, silly, kind, joyful, simple, lovely, faithful and beyond… that is Lola and Madeline.

I flew out to Chicago this past week to hug Lola’s mom and say goodbye to the lovely and missed Lola. Through the sky and the wind and the cold, I headed out on an adventure to Chicago. I felt so at home with Lola’s family, they made me feel welcome and connected. I felt a lot this week… more than I have in a long time. I sat with Melissa, Lola’s mom, we talked about the last moments, the sounds, the way the body looks different than we imagined when our children died. Lola was home with her family, a whole bunch of them when she left. I remember when Madeline died, she waited for her sisters. She went on her terms, hearing the girls, Matthew and I sitting with her. The girls and I sang songs Madeline loved, and we were just very present in those moments. Lola had her people right there, her family. She got her hugs, her love and her time… and she decided when she was ready to finish suffering. I know this. She was burrowed next to her momma, and she took her last breath. Melissa heard it and felt it… and she snuggled waiting… waiting for the next wet breath. I remember waiting for that breath, I remember snuggling with my daughter looking at Lucy on her feet, Amelia holding her hand and waiting for the last breath. I could hear the changes in her heartbeat… her heart started to sound wet and tired, like Madeline’s heartbeat was leaving. It did… just as Lola’s did. DIPG stole those parts, those girls made smaller tapestries in their short lives, full of love and pain and joy and suffering and light and simple and faithfulness. Forever important tapestries, made for their families to be able to carry them around.

Melissa talked to me about Lola’s Eulogy, her fear of emotion and need for a backup. I thought about Madeline’s funeral, her goodbye. I thought about what hurt that day… right now in this part of my life. I remember Lucy started to cry, she was a baby back then. I stood there, torn. I was so sad that no one took her for me, that in a moment that I needed to be present no one walked up to that pew and carried her to the back so I could be present. Then someone did… one amazing woman walked bravely up to our pew, right next to Madeline, and that momma carried her to the back so I could be right in that moment. For that I am forever grateful… I remember the music, during the song ‘Now I see’ from Tangled, a light from one of the upper windows at Saint Madeleine’s a perfect light shined through the high windows on to her casket. I saw the dust in the air, and little rainbows form around. I just knew that this was where we should be… in this spot of suffering. That our suffering would not be wasted…

I told Melissa I could switch my tickets to not miss the funeral, and would be honored to be a backup. I also told her that there are few things I regret, Madeline’s Eulogy is something I regret. I wish I had the capacity to read what I needed to back then and not have someone else. I try not to focus on her eulogy, the part read by an old friend, it hurts too much to see where life brought both me and that friend. I am more regretful of how I didn’t get up there on that altar- and read the words I needed to for my daughter. I told Melissa to tell your brain and heart to do it, to read it. Don’t practice. Do some serious self talk and tell yourself you WILL read it, you WILL share Lola and her journey, and you WILL not fail. Melissa assured me that with her husband next to her she did just that. I don’t doubt how beautiful it must have been… that lovely can be nothing but beauty to me.

Melissa asked me to read some words a Hospice nurse had given her. I read those words with such a connection, it was like someone wrote all I know about Madeline’s presence and purpose… and Lola’s love and faith. I read them and knew I could not be a back up for Lola’s funeral, because if I read those words I would be telling Madeline’s journey. It was Melissa’s job to tell Lola’s…

So she did.

Life is so hard… brutiful to be exact. This story is full of bruty and honest and truth… it is exactly how Melissa knows life started for her lovely and exactly how Madeline started… this is Lola’s Eulogy and story for her- the beginning and end.

The Brave Little Soul

By John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you”. God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

sky

 

Do the next kind thing…

The story starts like this

“A man works in a restaurant and takes care of his wife and 3 children. He loves God and family and life. On one particular Easter he had to work, the restaurant owner reminded him how busy it will be. He was disappointed and even angry to miss Easter mass and time with his children. He went to work, though normally friendly and gentle, he was annoyed quickly and short with some customers when they complained about the wait.

A man came up to the order window and requested 2 orders to be placed on separate trays- 2 eggs, wheat toast, home fries, coffee and an orange juice. It came to $15.53. He handed the man $20 and said give the second meal and change to the man behind me. The orders came up and the man handed the first order to the customer who bought both. He then took the food and change to the man that was standing behind the customer. The old man was disheveled and clearly poor, his clothes were dirty and he hadn’t bathed in a long time. He may not have had the funds for more than a coffee.

The employee handed the man the tray and change just as he was asked to. The old man was beyond grateful, he looked like it was the most amazing gift he had ever received. They looked around to thank the customer, but he was gone. He was nowhere to be seen…

In that moment the employee thought about that old man’s Easter gift, and about that customer. He knew what he had just witnessed and been a part of- Jesus. That customer was Jesus. He started to doubt himself, thinking why would Jesus be right there at that moment?… but then again why wouldn’t He?

The man returned home and joined his family for the part of the celebration that was left. He hugged his littles and his son said ‘Daddy, Daddy I saw the Easter Jesus today!!!!’. He replied to his son did I little guy, so did I.”

But that isn’t the end… it’s only the beginning.

The world we live in is so confused, so broken and so in need of love. We all wonder how to make it better, neglecting the obvious and simple. The answer can’t be simple, that wouldn’t make sense, right? We need an overhaul, a big change, we need a quick fix. We need stricter laws, more rules, meetings to discuss what will make this world better. We need to find a person to blame, it can’t the fault of our own hearts and fear and the people we are building.

A couple weeks ago I went to a training session on Restorative Justice, I didn’t mean to go but the Creative Writing session was full so I got that one. As I sat and listened I heard an approach that is not necessarily new but the term is newer. It is an approach to communities to encourage relationships, accountability and building better. It is less of the punitive type punishments, more allowing a person to see how their actions impacted others. I think it is brilliant, and I see a lot of it in me already. A couple teachers from the high school were there and they were very interested in this approach but wondered how can they get more people on board to change the community. The school does some training but it is expensive, and so many don’t understand or want to change. That is the norm…

I raised my hand, like a well-behaved student, and asked if I could contribute. I am not an administrator, a lecturer, cofounder of the term Restorative Justice, or anyone that has anything big to contribute- but I told those teachers ‘Just go do it, leave here and change the way YOU communicate and create community. Go into your classrooms, homes and activities and just do it. Model what this approach can do. Model it. Practice it. Share it. Build it yourself. Be a brave one.’

That story about seeing Jesus in the restaurant, it is the same thing. How can we change this? How can we build a different way? How can we create better? How can we become communities that are safe and welcoming? How can we encourage kindness and courage and confidence? How can we make this place that we all share better?

Model it. Go out into this world, this confusing and broken world- fill in some of the broken cracks and create some order in the confusing. Don’t stand back and miss an opportunity to be kind or welcoming or supportive or brave. Go out in the world and do better… build better. In all the little ways, show others what kindness and love look like. Give love to the broken, the poor, the hungry, the lonely, the sick… model that for others to remember. There is no BIG fix, there is no BIG cure, no BIG fault, no BIG blame, no BIG overhaul… just each of us choosing to model better. I promise the snowball effect will start to change this broken world, when we each do the next kind thing, the next brave thing… it will grow.

Do the next kind thing, as tiny as it may be. Always do the next kind thing… others will follow suite.

Jesus is in those moments, and you NEVER know when you are doing the next kind thing for Jesus, but He is there. He is there in the broken, poor, sick, lonely and just our regular days… why wouldn’t He be?

have

Easter…

Easter is different to me now, it is profound and emotional and powerful. I have always loved Easter, the big family dinners, traditions and spring. I thought I really understood that Jesus saved us, that He was made to give up His life so we could go to heaven.

It took my daughter dying for me to really ‘get it’. Easter is not the same anymore. I am grateful in a way that I am not grateful for anything else on these holy days. I feel emotional when I speak about Good Friday or watch The Passion of Christ. I never felt that part before. I never reflected on the pain in that day… the pain of Jesus and the pain of Mary.

Jesus keep walking, with a crown of thorns, a heavy cross, a bloody ripped up back and people spitting on Him. He kept going, to the end of his time here. His pain didn’t stop at the cross… it had only just begun. Imagine… He was physically nailed to a cross and people watched Him suffer, no one saved Him. They watched him… like He was a show, a point to be made.

Mary had to watch this. God chose her for this role, could she have ever imagined what it would feel like? I feel a strong connection to Mary, to her loss. I am grateful my daughter didn’t suffer like Jesus did, no one spit on her and put her down… no one made her hurt more. Madeline was not nailed to a cross… yet the pain I feel is immense. I can only imagine what Mary went through, how that made her suffer and question her faith. Yet she kept walking, she kept moving, she kept walking. In all of her pain she kept going…

I feel so thankful that Jesus fulfilled His painful and profound ending… so that He could welcome my lovely and so many others to a place that they are saved, loved and waiting for us. Gratitude isn’t enough, I just don’t know a better word. I sat in Mass today and all of the songs and messages make me cry. I don’t cry often, it just isn’t something my body does readily. I stood in the front of the Mass holding Amelia’s hand, knowing that I was in the exact spot I needed to be in at that moment. Listening to the Gospel and the lovely little girl singing… I just felt immense emotion. Those darn tears snuck out… but it was a good feeling. I miss my lovely, but I can’t change that. I can’t bring her back, only bring her along. I must keep walking with my own cross, my own pain.

I imagine Easter would be the most special day with her, but today is special. I am excited to host Rick’s family… with food and fun and candles for our lovely children who now live with Jesus. I imagine Madeline and Devon will be hanging around with us as we enjoy a feast and treats… I imagine that just like Jesus they keep walking, keep coming home and stay right near us.

Thank you Big Guy ❤ for the gift of Jesus’ resurrection… for building us to keep walking and moving and most of all for keeping my daughter safe. We will keep walking, keep carrying our cross and building this world to know You more.