My Experience of a Lifetime… sharing a lifetime.

A few months ago I was invited, after many conversations, to speak at a conference in Atlanta, Georgia. CURE Childhood Cancer Organization invited me to speak at their weekend of Hope and Healing, a parent’s grief weekend full of sessions and speakers. I was excited and terrified, and worked for many weeks on the speech and presentation. I think I didn’t write out my thoughts for most of January because I was working and thinking so much about this amazing and scary opportunity.

It has been a long time since I felt so excited and scared, anxious and proud. It’s funny when all of those emotions mix… sometimes it feels like that with Madeline- happiness to look at a picture of her in a red polka dot dress and hurt for not seeing her right now. Scared next to excited, happy next to sad… all those mixes. Every step of this adventure was new for me, planning a flight and prepping a power point, and choosing an outfit (which was hard and required endless trips to Marshalls and rethinking and overthinking…). Finally the weekend was here and last Friday I zipped out of Albany and headed South to Atlanta waiting for a stranger to pick me up…

So… Karen was totally not a stranger for long. I spotted her red CURE tee shirt and we quickly chatted and grabbed luggage and started on the LONG drive (traffic in Albany looked pretty awesome…). I settled into the hotel and we all (the others lovely ladies of CURE) for dinner. After some discussion about Cheeseburger place or Cuban food, Panera it was. I loved listening to these ladies, Lisa I had talked to often and she was in charge of a lot of the weekend. I sat there and took in all the accents… I freakin’ love southern accents. I was mentally storing the cute words and the different words. I crashed pretty early that night after catching Pretty Woman and rehearsing one more time. I woke up and called my mom… blow dried my hair, put my lips on and put on some of my ‘armor’… and headed downstairs for breakfast (only I was too late for breakfast). I got settled and introduced myself to some and sat waiting for my turn… nerves and sweat almost wrecked my cool blue sweater. I walked up to the podium and was more nervous than I thought I would be. I looked around at a room full of my moms and dads, some grandparents and a few others… who had all lost their child to Childhood Cancer. Every single chair in that room (minus a few volunteers) was occupied by someone who ‘got it’. Some of those parents had lost their child only 3 months ago… I remember that raw and numb. Some of those mom’s and dad’s lost their lovely 15 years ago. We were all in different time periods of grief. Some of this is what I was scared of, some it was my message. I speak and write about my faith and God and heaven. I was scared at how that would be welcomed or not. I stood up and did my job, I tried to stay me and share this journey. I tried to share the pieces that I am pulled to do. I shared my strengthened faith and love for God. I shared how I wish I could have Madeline back but instead I must carry her, and when I am too tired to move I must let her carry me…

I said far too many ummmms, I had a hard time with the remote (2 step directions are challenging for me) and I told it like it is for me. I prayed my words would be welcomed into any that NEEDED them and I spoke. I pray now that it can be an opportunity for future adventures in sharing. I loved every minute of the weekend and was honored to have been chosen- but thankful I was invited to participate. The candle lighting ceremony was amazing… I watched a slide show and felt that bit of happy in my heart to see the smiles and the normal for many of the children. I felt connected when I saw their name and realized I had talked to or sat next to his or her parents earlier. I saw 5 year olds with big grins and teenagers being all independent. I saw babies with tubes and toddlers with no hair. It was hard. I think I focused on not crying, not letting myself get there, then I thought a little while before Madeline that this is the place. Feel it. Let it go… no one in this room cared about my mascara… or the fact that I had no tissue to fight back the wet eyes and drippy nose. I just let myself feel it for those moms and dads… then Madeline Musto came up. I lit her candle and felt joy and sad… that mix that most don’t understand. I was glad to be in this spot to honor her, but sad that she wasn’t there for a big hug and nibble. I lit her candle and watched. After the ceremony I watched again and chatted with some mommas… it’s a weird and hard event to experience together. I felt bonded to those parents faster than I could normally bond with most, at least in that moment. So… I finished and attended some breakout sessions and thought a lot about sibling grief and self care/love. I realized I have a lot to do. We all do, but I scored low in too many areas of self care and I am not going to do that next time I sit down and assess. I have far too much to offer and achieve and feel to not take better care of all parts of me.

I crashed early each night, by the light of cable TV. I never watch TV in bed, unless I am in a hotel room and have access to HGTV all night (I don’t have cable anymore). I burrowed in my fluffy white bed with both beds worth of pillows and watched House hunters remodel until I had to switch to something else because the couple drove me nuts. It was an amazing and refreshing weekend.

I woke up this morning, loving my Meme. She has been sleeping a lot with me again lately. I poked her and told her she was my favorite Meme. I pulled her over onto my arm and made her snuggle close. I love that I don’t have cooties and no one wants to snuggle with me. We woke up, had a rough morning and then headed our ways. I woke up this morning proud and glad and home. I love home, hate my house sometimes but I think that is a product of divorce more than Madeline. I love that Madeline’s feet have wandered through the house… I hate that my ex-husband and others have put their feet in my space historically. I think someday I will leave this spot, or change the floor… or something. For now, I love when I love home.

So… without further ado…. Here are some pictures of the weekend and my speech. I would love comments and help to build the message and my Polka Dot Tree Climbers… someday when I grow up

I want to talk and write and build and share…

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My speech- written, but spoken more from the heart.  I changed a bit and told beyond ❤

I am so honored to be here today in Atlanta, with all of you sharing bits of this journey. I know this journey is one that I share often, but there is something that feels SO new in sharing with a room full of parents who each have this kind of story. I want to start with a little introduction…

I am Erin Musto, momma to Madeline, Amelia and Lucy Musto. My set of chicks that God gifted me. I have many other roles, and always have- but being a mother to my ladies has been my favorite, most rewarding and most difficult. Parenthood is hard, very hard. I used to have days when I felt for a few minutes that it was EASY- then someone kicked someone or something broke or someone puked… and I was reminded to keep working in this hard role. There has never been a job in this life that was so amazingly— full and hard and fun and terrible and easy and treacherous and heartbreaking and joyful-all in one day, heck all in one minute. If you had told me when I was 18 this was what 33 would look like I would have quit right then, but I know in me know I would have missed out on the amazingness and brutal parts that make ME this very me.

I am here today, with all of you amazing parents, to share the part of my journey that overlaps with yours. Almost 4 years ago, next week, my oldest daughter Madeline left our world. I was dropped into this club that we are all a part of abruptly, it was terrifying and lonely. My daughter Madeline, known to many as Maddie, was diagnosed with Childhood Cancer- DIPG to be exact. On February 3, 2012 we were waiting and hoping for a Doctor to come tell us we needed to up our daughter’s iron, or give her a pill for an infection- but instead we were greeted by a Pediatric Neurosurgeon and met our first Pediatric Oncologist that day. In a world where I thought Childhood Cancer was Luekemia and chemo and treatment… I was ignorant and unaware of what Childhood Cancer REALLY looked like back then… I learned quickly. Madeline was diagnosed that day with Difuse Intrinsic Pontine Glioma- a super big word that might really make sense to many of you… that means she had weeks or months to live and there was no surgery, no chemo and optional radiation. There were few trials and it is 100% terminal.

Cancer was dropped onto my lap… actually it was a 500 pound weight thrown into my chest… it knocked the wind out of my chest and the feelings out of my heart. We just functioned, and thankfully a super smart doctor said in those moments “Enjoy this time you will have forever to be sad and grieve”. He was so right… he changed our perspective and those few words made us refocus on living not death.

In that time we let the world carry us and take care of the details for the easiest time with Madeline and our girls. Madeline made her first communion and confirmation and our whole family cousins, aunts, grandparents all together and squished in a house in Lake placid. We had a family photography session that caught those moments we needed to look back on. It was exactly the way that time was supposed to be spent.

Madeline passed away on February 8, 2012… only 5 days after her diagnosis. We were only gifted 5 days with Madeline…

Madeline was a vibrant, kind and compassionate kindergartener. She lived nad enjoyed the simpleness in life with her 2 sisters and her trusty sidekick Sparky. We spent our days at the playground, playdates and eating far too many munchkins… they loved the YMCA daycare and I loved my 1 and a half hours off… and we really just lived a fun and simple life (right next to all the fighting and biting and hard moments). Madeline had a peaceful energy about her… a way of loving everyone anyway. She was quick to parent and guide the little ones, and I honestly think I would have forgotten to feed lucy often if madeline didn’t remind me about her (poor third child). Madeline had this look and dimple that backed up her loving peaceful way… and a dreamy part that made the best inverted bob ever. I miss her like crazy every.single.moment.

Madeline’s diagnosis and cancer were very rare. Her tumor was not only inoperable, but also pretty much untreatable… we left the hospital with only a low dose steroid. I had no idea that her tumor would rupture and she would be gone so soon… It took a long time for me to fully see and feel the loss of Madeline. It didn’t feel like cancer, as I understood it before. I know now that my brain and heart and soul weren’t ready in the beginning to feel and know- I see it now and know it was shock and some denial. I think it was more in the lines of shock, I functioned far too well. Maybe you did too, maybe you, just like me hugged people and reassured people at her funeral. I told them it would be okay… silly me. I know now I was not fully present- there was a different version of me… one that could function and survive. It was a shell of me, that just got through those moments… real me was floating above not understanding what the heck happened.

Cancer took this… it took her- but she was sooooooo much more than cancer. I am sad when I think that some people think of my daughter as the kindergartener at Bradt that passed of cancer. Madeline was freakin’ amazing. She isn’t just cancer, in fact that was a tiny part of her story. Madeline was a peacekeeper… a kind chick and a lovely friend. She had tantrums and moments- but she was so different than most. Imagine a compassionate 5 year old… who ALWAYS thought of her sisters before herself. I remember going to her kindergarten conference her teacher just said “I have no issues or criticisms, Madeline is amazing. I should have more to say”. She was so different, as were your children I am sure.

Cancer was only a few days in her life, and her death was only one day in that. Her life was more than 2000 other days that were just her and perfect and imperfect. Death is one day… I can not imagine my daughter being remembered for just that one day- that one day that broke me, broke my daughters and STILL hurts… she was soooooooo much more than any one day.

I have learned in this journey, this crazy and messy and complicated journey- that this is MY journey. It is different for everyone in my life just as it is different for you and everyone in your life. I see my girls and I know I have never lost a sister, I can only relate in loss and pain as a mother. I can only know and understand MY journey in this…

This is my journey down this road… it is filled with my lessons, my adventures, my faith and, my soul. What I have learned and built is different than what you will build and learn. So much of my journey is based in faith, faith in God and heaven. I know this journey is different for you, but this is my where my soul has brought me, to this very spot with this very message, to be here with you all.

Life with grief has brought so many gifts and heartaches… but most of all it has clearly brought many lessons and pieces of knowledge about life and how it works. I feel like the lessons are the bits I need to carry and hold and remember… to help me build and move and live on…

One of the most confusing things I have learned is how different and complex grief is. I used to look at grief and mourning as very simple things, as a piece of death that people get over. We date mourning to a small amount of time that some things are appropriate, grieving people follow this wave I used to hear about a little bit denial and depression some anger then mix a little acceptance here and there… BAM.   Grief. I think because I had only ever lost old people back then, old neighbors and friends grandparents. Death was for the old and just was the way it was.

Grief is so much more than that. I was shocked to feel how physical grief is, did you ever have the 500# weight sit on your lap… and you could not move. The bus would come and deliver a buncha kindergarteners to other moms and dads and not to me… and I would sit in the chair and a 500# invisible person sat on me and I was useless and could not move. Grief is so physical… although those moments don’t happen so often now, I can still feel them and the hurt and empty they were a part of. When they happen now, for all that they hurt I love them- I carry those hard ones right next to the joyful moments of Madeline.

TO understand some parts of our own individual ways of feeling and moving with grief- I think it is important to also a bit of where we all come from in this. Grief can exemplify differences in spouses, friends and beyond- those differences can help build stronger or create a rift. We all carry into life our background story- with it come customs, traditions, stories, religions, nationalities, amounts of loss and how our parents let us understand death.

I came from a huge Irish Catholic family- my grandparents had 15 kids and almost all of those had a set of their own. We grew up VERY close to my mother’s side and were regularly surrounded by people- uncles, cousins, adopted family. Holidays were crazy and the few deaths I remember were like potluck family reunions. The family member who passed was thought of and talked about as community members and families stopped to offer condolences. There were often kids around playing in the back room and not understanding this as a super sad affair. Maybe this is because we heard so many talk and laugh and tell stories- like how my grandpa always hid the werthers, but we always knew… or how many times we got grandma to the point of “Jesus Mary and Joseph give me strength”… so when those members passed it hurt but it was like a celebration of their life and large legacy.

Fast Forward to today… and sharing Madeline and celebrating her- being loud and squishing people into my kitchen to feed them Happy (which is not real… it just adds 40 pounds on…). It make total sense to me why I am the way I am and why I greive the way I do. It is totally different than my Ex husband and his family. I really see this as a product of what I grew up in. We each have our own background and customs with death and is a part of the legacy, tradtitions and customs like Life. Each of us carries our way to share, honor, cherish and carry our child’s death and legacy- loud, quiet, huge gifts, small blessings, big celebrations or small traditions are different for each of us. Imagine the differences in this room, with the way each of us carries this…

In this crazy big mountain of loss and pain I have learned to accept support and love from those around me. There is a gift in allowing others to support us, and just saying thank you. SO many times I had no more in me… no more energy to cook or clean. I had no more ability to enjoy and entertain my girls… I let my herd support me. I needed them and they needed to know they were there. Have you found yourself allowing people to carry you more? I know for our family it was pivotal in getting to this very spot… and I am sure to the next spot and the one after that…

Another lesson, or maybe a gift in this is loving me, for just me. I can only be sooo much, being Madeline, Amelia and Lucy’s mom has been my favorite part of me ever. I have to accept that I am the best me for that moment, even if it is not the me I love to see. At the end of the day, I am still here and I have done some of what I meant to that day. I am still living and breathing and here. In the moments I fail I try to remember that I am trying, the best I can in that moments with the tools I have to get by and hopefully build me better and stronger…

You know what else I have come to know as truth? My madeline was made just for me and our family and this life. I know that we were the best people for her, that she shaped us. I know in me that I will see her again someday, and for now I spend my days loving my chickets and living and building me- I know someday I will be with her.

When Madeline passed I had a supreme understanding of where she is, that she is ok and that God is intertwined in all the details. I see that there are no coincidences, no happenstance. That He takes care of us. I know not everyone has a strengthened faith, but for me I felt a much bigger understanding. I felt a new piece of me in the lost part… that just KNEW she was more than ok and I guess home now.

****some pictures and quotes ****

 

Sometimes what gets us through is a need for connections, I know some do not… but I and so many do. I needed to see those that survived and were still alive. I remember needing to know others that had gotten through this, or even just woke up and gotten out of bed… maybe moved through the day without their children. I NEEDED to see others who lived and breathed and walked this path and still could love life and feel their missing ones- and watch their other children grow. I was scared for the future, that I could never move…

I thought it was stupid and pointless that world kept spinning without Madeline- I could not understand how it could keep spinning. My world had stopped and broken, how on earth and others keep moving and living and working and laughing- When Madeline wasn’t here anymore?

Realizing that the bus would still drive by without my daughter and it was still a day in the world- was a HUGE movement for me. It still hurts… I will still have moments of wondering while at playdates or around kids that were friends with Madeline- “how did we get here?” I wonder how it is possible that the world spins, children grow and kids teeth fall out… I guess at this point Madeline would probably have braces and crushes… and my broken heart feels more broken for those missing milestones.

All of this wondering is more fleeting and less common now-a-days…. No my brain and heart and soul know that the world DOES go on, for me, my girls and all others.

I remember the moments I met some of the parents who lost their children to cancer over the past years. Some were recent- like months before Madeline- others were back in 1998. I needed to see and meet those who had JUST lost their children, the raw and fresh loss was necessary. I also neeed to connect to those parents who lost their children a time ago and see that they smile and laugh and cry and LIVE… not just a fake life but a real one. I had to see that there was life beyond this… we are supposed to love and bring our angels along…

I know in my journey connecting has saved me on many occasions. My friend Gina and her daughter Catie, who left this world in 1998, showed me that I will never forget Madeline- or not carry her in this journey. That connection and bond to her saved me and helped me so many times… Seeing others stand and move and not just live in a dark hole- I could not imagine carrying Madeline in a world of dark hole. It has made all the difference.

Each of us finds our way in this… with the tools and ways that we will. Expressing our child and our journeys, sharing our story and our adventures and growth are great tools in this.   In fact we use so many tools to get though all of the stuff in our lives- good and bad. I know since Madeline passed I have grown in the ways that I can express myself- with my words and feelings… and the modes of sharing.

Madeline got me back to writing… in 3rd grade my teacher told me not to stop writing, I remember her loving to read my words. I wrote and wrote when I needed through school, loving big essays and term papers, I was that weird girl. Then I grew and got married and had my girls… life got crazy. It always does. After Madeline passed I started writing again. I had been brainstorming thoughts and ideas for a blog when my girls were babies things like Potty Training vs Marathon training. I never started that blog. After Madeline I realized that I really connected to parenting with grief. So I started a blog, Climbing up the polka dot tree. Writing has been an amazing way for me to compose my feelings and thoughts. I think best in words I write. I have found great healing in putting my words out there, in taking the time I needed to think and feel. It is my way. I see so many other parents who have traveled this journey use their words to remember, to sort and to help them build themselves stronger, more self aware and sharing their children and experiences to make those key connections.

Madeline forces me to step out of my comfort zone all.of.the.time. I swear she likes to make me nervous and keeps me doing my job. The fact that I am standing here, terribly nervous to mess up and drop a bunch of um’s in… is a huge step. Speaking has become a special and terrifying way to express my journey and find connections. I am here today… I often wonder if our kiddos have pushed all of us… to be here today in a room full of others, to talk about the experiences and the journey… all of those things take extra bold parts of us. I know that it is her pushing me to get a little scared, to put myself out there and to share her. I know it helps me when I think of all the words and stories I have gotten to share with so many about Mads, life, grief all that jazz… it is crazy to me speaking could ever have been a great outlet in this pile of grief.

Sharing and expressing our lovelies and their stories is like a tool through this, it’s a key to remembering and ensuring others remember as well. Sharing in all the ways we can- speaking, writing, support groups, counselling… whatever it is saying those words and stories brings our children along.

In this sharing and bringing our kiddos along… I always remember that I know my Madeline so well. We all know our lovelies. How could they be forgotten… how could we not share them in a way that we need. We are all different, that is the best part. Our children were all different. I love sharing Madeline and directly supporting families, that is my niche. I love seeing others honor their children in different ways, ways that help them move and live and breathe. For me writing and speaking are natural for me, for others quiet and peaceful are the best way to go. For each of us I find it important to know that we need to do it all our way, never let someone make you feel like your way isn’t the way- I tell everyone to move and live and breathe and honor in the best way for you and your child.

Today I am so honored to be here, to be in this space… to know that we all ‘get it’. I hate that we ‘get it’. To stand here with you all, to have that extra label on my life resume, to know that we are not alone, to know that our child needs to be brought and carried into the future- I want my children to carry her, I want her friends to carry her. I am sure you are all in this spot… I want you all to know that this bond is strong, this bond between us. I know for me that Madeline wants me to say her name and share her story… I would love you all to share your story- with me, with others and with your future people. Our children are amazing. They are the best pieces of us, I know that God has got Madeline, I would take her back in a second, but instead I must carry her and wake up on days I don’t want to move and let her carry me. I must be the ME that she would want to be with, be the mom to my girls that she loved… I must bring her with me when I try new things- things she can never try… I must live for her.

Today and this weekend is made to feel HOPE, hope is one of my most favorite 4 letter words, I have a few others but HOPE is so important in this. I am excited to attend some of this programs this weekend and leave this experience with a supreme feeling of bring surrounded and grounded in these upcoming weeks. Hope is feeling safe, loved, carried… blessed in the broken, surviving and living even with the weight of this loss and grief. Just after Madeline passed away my cousin sent me a gift, a beautiful glass jar filled with rolled up papers. Each little rolled up paper had quotes and verses for moments I needed something… I opened many and connected to the words. I placed these little handwritten cards where I would see them when I needed them- my mirror, inside the door of my kitchen cabinets. I look at my favorite quote all.the.time. “I find hope in the darkest of days and focus in the brightest”. I try to use my good and bright days to find focus to lean on hope during those dark and hard times, almost set up a reserve for the times I can not see the light.

Today I am thankful for this, for this chance to share my lessons and journey, my hope and my Madeline. I hope we all leave with a renewed sense of hope and connection, more strength to keep moving and living and smiling and crying… all the parts of this. I love to talk and chat, but I want to give you guys a chance to talk or ask for the next little bit.

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2 thoughts on “My Experience of a Lifetime… sharing a lifetime.

  1. Although I have not had to deal with the loss of one of my precious gifts, nor have I had to deal with the horrible wotld of cancer, your words inspire me. They are beautiful and touching and strong and amazing. They make me treasure my 3 girls. They make me see that you are a REAL person dealing with so much more than me and although you have the same horrible days and times with your strong willed girls as I do…..you find a way to be a powerful inspiration to so many. I want to thank you. Your words wake me up and fill my heart. So thank you! And keep filling the hearts of many with your words!

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