Fast Normal. Full Normal.

What a whirlwind of a weekend, catching up and still trying to catch up. I love that I can literally SEE progress… I see a house that is pretty clean (hey, it’s the best I can do), a yard that looks like the prettiest dog park EVER (three dogs poop and run a lot)… and some bill paid, Maddie’s Mark work and more. I even got a really good run in and started full blown training for the 18.12 Challenge. I am sitting on my bottom watching TV with my ladies thinking it feels VERY hot and my hips hurt. BUT… I worked and worked with my super awesome friend and my yard looks great, did I mention my yard looks great???

I look back at a great weekend and know that no part could have been done ALL.BY.MYSELF. It was a weekend of fun with my nieces and nephews. We hiked, played, ate and enjoyed some fashion shows. It was a bright way to start a holiday weekend and reminded me that a new normal is the normal. It was awesome and easy and happy. My family left and my girls went to their dad’s house… so the weekend turned into finishing many projects and brain lists. I had to make a delivery for Maddie’s Mark (to an awesome playground project near Saratoga) and then the first ‘long’ run of my training for the 18.12 Challenge. Of course an adventure turned VERY adventure- we got stuck in traffic for an accident. All I could think about was missing lunch, I packed no granola bars or snacks… what if??? So we ran a nice hilly and hard run and it felt good- minus the hip pain of being old and out of shape. Then we prepped for lots of work on Monday. I am thankful of the people who got me to tonight… to the good mood I have had and carried this weekend. I am thankful for the ones who make me push when I am pooped or help me have less chaos in life.

Do you ever feel like you just CAN.NOT.CATCH.UP? Every year has a new challenge of catching up, at least that is how it is for me. I don’t get boring years, or maybe I don’t want them. This year I started working at the girls school (I LOVED IT) and then picked up time for a teacher at preschool who is out sick. My laundry is NEVER all done, but I guess it never was… we are always wearing something that needs washing even when the rest is done. My windows are never clean and they are full of nose marks… wait I am acting like I used to wash windows regularly. My girls are clean and fed… my dogs (and Molly’s) are happy and kind of well behaved… and I am here and good and chuggin’. Last year I was not working and life was full then- now I have a job and life is full- just as full. So… when the helpers help I just say thank you. I guess we just have to accept and live in the new normal, right? New normal includes a different Musto Mountain of Laundry. New normal involves time with no girls to catch up and go out and have different adventures. New normal is finding a balance of letting some things go and taking some things on… and at the end of the day lovin’ what I have that works.

 

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Honored by Toastmasters

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.

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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.

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A Happy Mother’s Day

Best.job.ever.

I love being a mom. My girls are my favorite, even when they drive me BANANAS. They sometimes fight too much, they sometimes bite… but then I see them love each other and me and it just melts my heart (that is soooooo cliché). I feel this strong and tight feeling inside of me, I think it is the way that love feels. I find myself smiling at them with a big stupid grin and feeling strongly connected and proud of them and that moment.

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Today was perfect, even with my sore and peeling shoulders (Lake George + sun = sunburnt Irish chick). I loved the day of adventures with my chicklets… no plan. I am thinking back to some of the funny moments and seeing that they mostly include Lucy is no surprise. Lucy most definitely wore her new shirt she picked at Polkadots last night, a handsome little Nautica button up. She was so excited to get a milkshake right after Mass, early in the morning, she polished it off fast. She then burped in front of a lot of people… strangers. I was hangin’ with that kid. I am surprised Amelia didn’t disown her. She was a hot mess at the beach, but man she HAD to get the beach and get in the sand. She also had to wear jeans because they looked ‘AWESOME’ with her new shirt. She dug holes in the sand, went too far in the water and got soaked… all the while Amelia twirled and put her feet in the COLD water. Amelia stayed pretty neat and just looked like a happy girl with her feet in the water. It was perfect.

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We attempted the wax museum, but those girls put up a good front about not being scared of anything… we got to the top of the stairs and couldn’t make it down the first hallway. I might have looked like a big wuss , but honestly that hall freaked.me.out. I was not going first… so we quit and headed over to do bumper boats. I think that was safer for us all. I loved seeing them drive the boat and squirt the water and laugh, it was so cute. I love seeing them have fun and be happy. They are quite a pod… I am glad they are my pod.

 

We got souvenirs and lunch, I laughed at the souvenirs they picked. Amelia a cool Indianish Lake George purse and Lucy a stuffed animal… like one from Walmart, a 10$ one that was made like junk. She just loved him… sometimes I cringe at the choices they make… honestly she could have gotten a geode or a cool name plate- but she HAD to get a stuffed dog. Just reminders to be patient and tolerant and different… right?

So it was an awesome and simple day. We ended it with Lucy fighting me to eat steak and salad, because she hates healthy food. We ended it with an awesome friend helping me grill, because I lack that skill. I am ending my day hot and sunburnt… but happy. I am content and love where I am at… I love my chickens, my friends, my family and my life. I am glad for the sun, the sand and my girls… I even look forward to the new layer of skin I will have on my shoulders… ish. Today was a great day, a perfect day. My moments and day only lacked one extraordinarily important person, but she was there. Lucy told me she would be at the playground or the beach- I know she was all.over.the.place. She loved seeing her sisters happy, seeing them love me. Madeline loved seeing them get milkshakes at 11am and run around like crazy people at the beach…

Happy Mother’s Day… to all you mamas out there… every.single.kind.of.mama. Thank you God for all of the blessings and love. I love this job, this gift. At the end of the day, all.of.them, I know that I am right where I need to be.

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…. she was so little.

She was so small. I think my brain keeps seeing her as what she should be… as an 8 year old girl with weird teeth and long lanky arms… running around starting to be more independent and maybe I might have allowed her to have a sleepover by now (she would be in 3rd grade you see…). I think I see her that way until I see something that was hers in Kindergarten or her handprint next to Amelia’s now hand… it is crazy how little she was.

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The other day I went up to the closet to grab Madeline’s First Communion Dress. I hadn’t pulled it out in a long time. Madeline made her First Communion in the days after her diagnosis, way earlier than her friends. Traditionally Catholic children choose to make their First Communion in 2nd grade, after a couple years of church school and prep. We had hours to plan Madeline’s and it was pulled together by some amazing souls. It still blows my mind that they could do it… but I am honored and I get it. Madeline was so little then, partly because she was sick and weak and tired… partly because she was younger than my girls are now. Weirdly, my girls have surpassed their sister in size, school and life. It is one of the hardest and best things for me to see- my girls growing and changing… getting to grow and become themselves. It is bittersweet to know that she isn’t right here getting bigger too, but somehow my brain sees her that way… as an 8 ½ year old, not the 5 ½ year old that headed to heaven.

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I looked at her dress and her tiny little sweater with pearls on it. I wished that Amelia and Lucy could wear her dress. I knew they couldn’t, but the other part of me couldn’t believe how little it was. It hurt to see that tiny dress and feel her gone… to remember her tiny weak body. I went downstairs and looked at Meme’s dress… almost twice as big as Madeline’s. Amelia is almost twice as big as Madeline was… craziness. It is only in these moments that my heart and brain understand how little she was and how long it has been.

Life has a funny way of sticking you right where you should be and things that will help you even it freakin’ hurts. My neighbor, Theresa, has babysat the girls for a long time… she is graduating from St Rose and is a grown up. I remember my girls watching her grow from the dining room window… watching her go for walks with friends, eat in her front year, prep for proms… they loved playing with her. They still do. Theresa carries Madeline with her always, she is so young and creative. I love that. I love hearing her memories or when I tell her a story she didn’t know. I love that she shares my Mads with so many. She is part of this legacy and life of different and changed. Back to topic… Theresa asked if she could do her Senior Project around and about Madeline. She wasn’t sure where to start or what to do to share her and stories… Madeline isn’t here to photograph.

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So it was a challenge and emotional journey for her. I was honored and proud. I also sat and went through Madeline’s things to find items to photograph and stories to tell. I pulled out outfits, photos, drawings, writing pieces, old toys, books, a doll from the hospital, a piece of her hair from the night she passed and handprints that the amazing nurses did. I couldn’t imagine how she would pull it together. I was very impressed and honored by her show, her display. It was warm and real. I loved her imagination and the truth in it.   It wasn’t just about Madeline, but loss and grief and memories. It was creative and balanced. I loved going through items for her. I entrusted her with several priceless things, not replaceable anymore. I trusted her to share her moments of Madeline and mine… and just what it is like to lose someone so young and close and special. It was perfect. These past few months I had opportunities to see and feel those little clothes, the ones that wouldn’t even fit Lucy anymore. To be reminded of how little my Mads was, how little she got to be. I saw her as SO BIG back then, but there was so much she missed in her little.

I don’t often feel all sad and icky, sometimes I don’t even know this is what is bugging me, but on Amelia’s First Communion I saw it the way I wished it for Madeline… wished it for all of my girls. I saw a bit of my heart that left way to soon… I felt her missing. I sat in a pew with a messy family… not at all what I thought I would have ever in my life. I felt such joy, the real stuff, seeing Amelia shine and beam on her special day. I felt such sad, real painful stuff, at the same time. It is really hard to sort and feel all of those emotions at once, but honestly I think it is my forever and my normal now. I think God works in the pain… He reminded me of the tiny and amazing gift he sent for 5 ½ years to love and raise and influence… He reminded me of the 2 chickens I need to keep raising and influencing and loving. He is good like that, lifting you in those moments. He is good about communicating in those moments. He is freakin’ good.

So… at the end of today I sit. I sit in my backyard with a pile of extra dogs, my 2 crazy chicken’s playing together, my laptop and my feet up … and I know I am blessed. I would be nowhere else right now. I love this spot, this very spot. I even love it with no Mads, because I know she is here, she is okay. I would take her back in a nanosecond but it isn’t part of this big and crazy plan, she was meant to be little and change big. In the blink of an eye she will be with me for a super hug. She is so proud of her sisters. I felt it yesterday, I felt her love for Amelia. I know she loves her sisters living, breathing, growing, laughing, changing, loving, growing, carrying, yelling… being the people they were made to be- just like she was. They are the greatest gift God has ever gifted me, for real. I can’t imagine life being different, or having a different set of kids.

So… I am going to sit and hang with these two nutty ladies and watch them play ‘What time is it Mr Fox?’… and let the sun hit my face. I love my spot, my space, my right.where.I.am.supposed.to.be.

 

 

Thank you God. Thank you, thank you, thank you… for it all.