So, a few months ago I was asked if I would like to speak and be a guest and be honored at a Toastmaster’s Conference in May. I thought it could be a great opportunity to get to share Madeline and our journey to a new and different group of people. I didn’t think too much about it, but I was excited and nervous as the day approached. The week of the event received an email of the program and realized I was receiving an award, a really powerful and kind and inspiring award.
I was embarrassed and honored… proud and scared. I should have been just proud, but then I am scared if I am proud I am being cocky… but after a little while I realized I should be proud and honored… it is a really special gift for all the sharing and learning and working this journey has brought. Of course, in true Erin form, I had a speech written and practiced for a while… then on Wednesday (the Conference award speech was Saturday), during a bootcamp class full of sweat I had a whole different thought about how to share and speak. So, I had to go home and get the thought on to a screen and print it… I knew a long time ago that I needed to write about (then speak about) purpose and faith and bits of my journey that back those up. So a new speech evolved…
So here is a bit of this amazing and wonderful award lunch… I left feeling light and proud and confident. I left with some new contacts and stories and connections and some awesome feedback. I didn’t know this was a life adventure thing, but I feel like speaking in that group was a significant step for me. So read, enjoy and share. Thanks for the support and encouragement climbers of this crazy polka dot tree.
Toast Master’s Speech – May 9, 2015
Today is a good day, today is a special day. I am honored and grateful to be here to talk to all of you, I am still wondering how the young lady who came close to failing my speaking intensive class on diving mammals in college… could grow enough to stand here today. Thank you for allowing me to share my words and journey, I know that this journey and these words purpose is to be shared- to create connections and surround people who need to know that they are not alone, or maybe to push someone to do something or change something.
I am Erin Musto, mom to Madeline, Amelia and Lucy Musto… President of Maddie’s Mark Foundation and blogger who loves to write. I am a lot of other things too, but you guys don’t have all day to chat and listen.
About three years ago my life was forever changed. My oldest daughter Madeline, a five and a half year old kindergartener was diagnosed with an inoperable brainstem tumor. Madeline had DIPG, diffuse Intrinsic Pontine Glioma… the most fatal one of the most rare brain tumors. We were told Madeline had weeks or months to live and to enjoy this time… we would have forever to grieve. Madeline passed away only five days later… five days filled with milestones, events and being surrounded and loved by her family and friends. Only five days…
In the years since life has been hard… full of pain and hardships, filled with very difficult challenges… grief from losing Madeline mixed with the loss of my marriage, divorce. It has also been amazing. I have seen my daughters grow so much to be crazy and faithful and creative and mature little Musto chicks. I have seen the world carry and support and honor my daughter, my family and myself. I have seen people come to see what is important and change, come back to lost faith… I have seen AWESOME things that have changed me.
Sometimes I wonder why I am not so angry that she had 5 days, that my lovely Musto chick had only 5 and half years here to do her job. Why I am not running around screaming “look at what I lost”… or why me, why her, why us? I wonder why I didn’t hide from all of the hardships that have come into this life since and try to maintain quiet and easy and dark… then I know why. I see the why… because in all of this pain and hard and hurt and broken there is and was powerful and amazing and kind and God. He has been right here… I know it. The loss of Madeline here has brought me back to knowing and seeing and appreciating God. I know the lacking anger is because something in me knows that she is ok, she is still doing her job and that she is right with me helping me build the me and the sisters that we each need to be. She is right here working in the connections and experiences and fulfilling her purpose still.
I think one of the most annoying things, though I understand completely that in loss like this NOONE knows what to say, is hearing everything happens for a reason… and when people offer that to me I gently tell them instead that everything happens for a purpose. The word reason means that it is explainable. Reason is definable and more tangible… it feels almost scientific. Madeline and so many others had purpose. Purpose is the word… purpose is in the hard stuff we all must overcome, or just trudge through. Purpose is the heart and the meaning behind these things, there is purpose in the awesome and purpose in the pain. I don’t wonder why Madeline, I don’t wonder where she is… I see that my purpose, my goal… her legacy is to share her story, our journey and be the words that she can’t speak as she should be growing and changing the world. My purpose is to use my voice to change this, to remind people that life happens crazy fast and we have.absolutely.no.idea.what.it.will.look.like in, hours or 5 days… My purpose is to write and share and speak and connect. Madeline is in the connections… she is in the words, my words and my voice.
The connections have been a huge part of this journey… connections to help fulfill her mission and share her voice. Connections remind me that we are all part of something MUCH bigger, they restore my faith on a daily basis. God is in the details, He truly is. I often remind myself that I am right.in.the.very.spot.i.need.to.be.at.that.moment. It blows my mind on a regular basis how we are all connected. I love when others see and know that these connections are made for the purpose, the plan. I meet people in my neighborhood, now here in Albany from my neighborhood back home- three hours away, in a way helping to thread the missing of home and the values of a small town into my girls. I wish very much that my girls got to grow with the 50 something cousins I have on one side and Grandparents who still danced and loved and were very candid about life and faith. The connections to home and people from home are bit of my past God popped in for them. Joining a running group and meeting a mom whose son was undergoing treatment and wanted some positive and inspiring 5ks to run… having no idea that my daughter had passed and the 5k recommended to her was for Madeline… talking and connecting to her and her joining the team for Madeline’s Foundation. Crazy connections happen all the time… and often are brushed off as “It’s a small world…” seriously? It is all about the connections, the purpose and the plan… at least that is how I see and know it. It is how I trudge and climb and build and break… knowing that this is all part of something amazing and full… someday (in fact even now for somethings, perspective and retrospect will kick in and the threads will be more visible. I believe our purpose is laden with threads… connecting us to the ones we need to help and to the ones who can or will help us… to the ones who will make us laugh or build, even break. Sometimes that thread is meant to be broken… but that is another talk altogether.
My experiences have helped me to see the purpose in this. A piece of me just knows certain things… things I never thought about or really spent time on before. I know there is a heaven, God is not only real but interlaced in it all… stitching our threads together and mending our broken… Madeline is in heaven…. And Madeline was ready and prepared for this journey. She knew that this was her plan, she just wasn’t old enough or allowed to really share. I don’t know that part… but the experience of her passing changed me. She knew, and something in me knew. That something is my bit of Spirit or bit of God…. Whatever you want to call it. That bit of me is reminded in experiences… things that are just tied to these connections and this purpose. To many this stuff is crazy, and can totally be chalked up to happenstance… but it isn’t like that. These moments happened for a purpose… I remember one day after Madeline passed my friends had set up meals and a cooler. This particular night there was no meal coming but my brain thought about how I had nothing to offer the girls, not even cereal because we had no milk. I felt to drained and sad to leave to buy milk and thought the girls would have to fend. I went to the mail and the cooler had something in it…. Milk. My friend Sarah, who had 4 kids at the time, had a feeling we might need milk. She only bought Milk. She just had a feeling… there was no reach out, no text or Facebook status saying I am pooped and need milk… she had a feeling. I know in me that the big guy was in that feeling. People have those feelings all the time… pulls to things that they are good at or were made to do… pulls to Hospice care or teaching or helping a child in need… God is in the pulls. So I have had many experiences like the milk one… and know that it is his way of reminding me to smile or breathe or send it up to him… or cry, not to fret he is in the connections and the experiences and the purpose.
Soo… Purpose, connections and experiences… what has that brought me to? It has brought me to a stronger me, that can share Madeline, life, faith, divorce, broken, joy, funny and embarrassing. It has helped to build one the most amazing things to come from this crazy journey- Maddie’s Mark Foundation. This is the rock that keeps me functioning when I want to run away. It is the solid that reminds me of all those things I just talked about… with no connections, no faith, no purpose and no amazing experiences there would be no Maddie’s Mark. Maddie’s Mark Foundation is a non for profit that we started only weeks after Mad’s passed which is a crazy thing to do so fast. We work to create best day ever for families with sick kids. We work to connect people to support or be the support. I have worked with many families who have lost children now and feel part of purpose is working in the grief. Maddie’s Mark has been a huge gift in this… sometimes an exhausting gift. I love the events we host and plan, the best day ever’s and seeing children and families enjoy simple and amazing when life is complicated, expensive and hard. That is a gift in this.
Thank you for inviting me today, for letting me share and speak… It is a huge honor and one of my favorite things… meeting and connecting to new people. Thank you for letting me share bits of my journey and my lessons and voice… most of all thank you for letting me share Madeline’s voice.