“That thing you like to do…”

Strange thing has been bugging me today… I have a love/hate relationship with those all.day.ponderings. I was working out and thinking about it, driving around running errands and thinking about it. It isn’t my normal mindset to do that. I was that lady prepping my comeback should anyone ever say it to me. I might add that it is pretty hard to offend me, but I felt offended by a comment someone said to friend that just put down all the things that are important to me.

Talking to a friend the other night we were talking about some stressful situations in our lives. My friend told me that their spouse never really supported their compassionate self, their desire to help other families in hard spots… they didn’t say it like that though. This friends spouse told them, when they would head out to help other families with sick children or hard circumstances, that they should “Go do that thing you like to do for sick kids”. What a mean thing to say. I thought about how I would respond if anyone said this to me. I also wondered what it would be like to not have the feeling inside that you NEED to do, or better yet should do, things for people who have sick children, adults who need support, women who just had babies, friends who are broken or sad, people who are lonely or poor or malnourished. It isn’t a thing we ‘like’ to do, but it’s a thing we must do. In me I must, but maybe I have to stand back and see this from another’s eyes- since we are not all the same. I don’t feel that I just ‘like’ to do this, my friend doesn’t feel like they ‘like’ to do this, my herd doesn’t feel they ‘like’ to support us and others… but there is something inside us that knows we need to. That part of us just does it. It isn’t a hobby, it isn’t a choice always… it is part of our purpose. I think when I look from another angle… I see that maybe others can’t feel or know or understand their purpose yet. Life may not have (may never) present a circumstance that they see and know their purpose.

I do know that I hated hearing that, it felt like a terrible and icky thing to say to someone. “Go do that thing you like to do for sick kids”… that diminishes the importance of it all. I don’t even think everyone is called to take care of families with sick children but we connect to what our life brings us… maybe people who feel this way can’t understand this. I don’t know.

I do know, that the mindset that goes along with that phrase is not at all how the world should be. We all have our piles of hard. Our families have struggles, diseases, experiences, choices… things that other’s should connect to and support. My family has been very touched by Alzheimer’s, Parkinson’s, DIPG and Heart Disease. My pile is full of things that pertain to those, and more. Everyone can not help everyone, it is impossible. We should each do our part to support, carry, fund, change, brighten or save another person or family… it is in us. I think we are drawn to what we need to support and maybe part of our job is sharing our journey to make another person aware about a need for change. We are not aware of the piles we will take on… the journey ahead. It is terrible to say to someone “Go do that thing you like to do for sick kids”… for we never know if we might have sick children someday. So we should always take care of people- hungry, poor, less brave, bullied, sick, and dying (or anything I missed)… it is why we are all here and connected.

To the ones who say “Go do that thing you like to do for sick kids”… know that the world is full of circles and we should take care of each other, we never know when paths might cross or we might need one another… I myself know that I want to know I did my job and paid attention to my purpose.

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Lymphoma + Dante = Voice, Fighter, Changer.

In my old age I am learning new meanings to words I used to think I understood. Bravery, Mercy, Grace and awareness. These were words I never gave much thought back before Madeline was sick and I saw these things in action… in real life. Lately, though, I am focusing on the bravery one, the strength and confidence involved in being a child that stands up for something. What kind of something? Stands up for a friend, themselves, the right choice, the truth… or in this case awareness for a cause that is crazy close to my heart. Bravery, strength and confidence are what come to mind when I think about, read about or see Mr. Dante.

See… about a year and a half ago I was volunteering at Albany Med in the Melody’s Center with Rosie’s Love Foundation. It was nice to do something organized by someone else and be surrounded by the brave children who are treated at the Melody’s Center… to be wrapping Christmas gifts and helping them get ready for Christmas even though they are stuck in the hospital or home. It was nice to see some of the kids we have helped, discreetly or not. It was nice to do something simple and see my friends Dr. Porter and Grandma Pat. It was a great day seeing a bit of this I didn’t get to see or know or understand with Madeline.

Wrapping and helping and enjoying coffee while kiddos receiving treatment came and shopped. It was a weird best day ever for me. I remember a teen coming in a wheelchair, looking much smaller than I knew he was. I saw his mother, in a hoodie, with a big curly ponytail. She was stressed and scared and sad. Grandma Pat took her aside and loved her up and gave her the support that I didn’t know how to. Her son shopped, I wrapped his gifts. I labeled them. I wasn’t sure if I should sign his name on them or if he would want to, I think I left it empty and put a lil label for Dante on the packaging so he could finish prepping his gifts. I saw him and I saw a really hard time. I could tell that things weren’t going the way they should back then. I could see a boy who was so strong and tall and big in a wheelchair, looking younger and hurting and tired. I felt sad. I quietly tucked the name in my brain and listened as his mom talked about hockey and sports with a photographer who stopped in. I watched her put her normal on when she left Grandma Pat and the safe spot to break and share… I saw her do what I have done soooo many times. Dante was rolled back to his room, for what I assume was more Chemo or Transfusions… I don’t know. Honestly, I don’t even know what happens on the floor at the Melody’s Center, I only know it is full of heroes and brave kids, full of miracles and heatbreak. I know it is full of some of the most amazing doctors and nurses, social workers and child life specialist…

That day the name Dante was engrained in my brain, how could it not be? His name is BIG, his name is strong. He was made for big things… I know this in me. I saw him so small and sick back then and I see him now, fighting… standing, walking, living, growing, playing, changing… receiving treatment, going to school, playing and supporting the sports he loved, ‘Prom-posal-lling’, travelling, representing, mentoring younger children. I see him attending and speaking about his experiences, advocating for blood donations and how that helped him. I see him knowing how he must change this. In a way I see him being the BIG changer that has a voice here on earth, to change this. I see him as Madeline’s voice and Tyler’s voice. I see him as Devon’s voice and Catie’s voice. I see him as Myle’s and Ila Jean’s and Onja’s and Ben’s and Nick’s and Elijah’s and so many that are still here fighting. He is here for them. I think he can even love and understand that, which is super mature.

How is he changing this? He is running around like a crazy lady (that would be how I describe myself in this situation). He is an ambassador for the Red Cross, on the Nick’s Fight to be Healed Round Table for teen’s, Supports Make a Wish and helps Melody’s with ANY need they have to share or support. He rocks. Tonight though I want to share about his LLS Campaign, for any who do not know LLS is the Leukemia and Lymphoma Society. This campaign is called the Man and Woman of the Year Campaign and is a great and challenging way to raise A LOT of money and raise awareness. Dante is running for Man of the Year… last year he was Boy of the Year. In one year he has changed… graduated in a way… to Man of the Year. It is hard, to compete to raise funds against grown up real estate agents and business owners and other amazing and strong individuals. It is a HUGE challenge he took on. I love connecting to him because I love to see him thrive. He is dedicated to changing this, to creating a world where many less parents hear the words “your child has cancer”. He is spending his days in school doing normal things… then he comes home and works his behind off to fundraise and build this childhood cancer awareness world. He also is still being treated. The world doesn’t even understand what this costs him. He has an awesome weekend of events and ends up with a temperature and a LONG visit to Albany Med, just like his other Melody’s friends. Life is different with a Cancer Kid. If Dante lives it up too much he pays for it… and might end up being walked around in a wheelchair still. His life is hard. He still carries scars and pain. He still gets VERY sick. He still gets tired… yet he is competing against adults, professional and amazing adults. He is running in a campaign full of compassionate and strong adults, to do amazing things… He is really still a child in a way- a child who is fighting childhood cancer. I see that as amazing and special.

I am thankful and honored that Dante listens to the bit inside of him that tells him to be the voice for the ones who have no voice here. I am thankful he works so hard in this… I see change.

I have loved meeting so many people on this journey. I have LOVED the ones I met through LLS, even though Madeline was diagnosed with a brainstem tumor, we all support each other. I have loved meeting Rachel (girl of the year a few back), Andrea (she ran LLS campaigns), Lydia Kulbida (Woman of the Year), Michelle, MarEle, Nuance, Zac (Twill but knew before, just kind and compassionate) and many other awesome people. It is a great campaign, full of positive and compassionate supporters of an awesome cause. I love that. Awesome people using their lives, trades, gifts and voices to change and support big things.

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Dante is here for big things. Support those big things and help him change this… <3. He is hosting a special event on Sunday May 3, 2015 at Union College. He set up a Wizard’s Game with many of the Doctor’s at Albany Med and many local to Albany special people… this game has some special add-on’s. I hear there is a theme about how you can help and support… also there is a special section. ALL Melody’s at Albany Medical children are invited and their families to enjoy a ‘Best Day Ever’. It will be very special. If you are around and not playing baseball with your little or having a First Communion please get your butt and your family butt’s there.

❤ to the changers… you are all amazing and profound in this life.

Thank you, love Beautiful Me.

After an amazing night, a celebration for Madeline and all of the work that we have done to her honor, I woke up to a bunch of messages and Facebook posts. I was blushing as I read them, which doesn’t really happen too often. Kristi, a local blogger and celebrity, was on the radio station talking to the FLY Morning Rush about beautiful people. Sandra Bullock was nominated most beautiful person, and she wanted to see what local women would also be labeled as Most Beautiful. There was a conversation about what makes a person beautiful, physical beauty, personality and confidence. It was a segment that I missed and probably would have choked on my coffee if I had been listening. After talking about some amazing and lovely women- newscasters, radio personalities and an awesome medium… Kristi named her pick. She picked me, Erin Musto.

I felt honored and maybe embarrassed, I don’t know why. I have now had a day to think about it and see it, and it makes me feel special and more confident. I went from a blushing and in a way hoping that a bunch of people were not listening to the most popular morning show in the area… to being proud and feeling beautiful (even though I have yet to shower and my breath all full of coffee). I got to listen to the segment and hear what it is to be defined as beautiful. Kristi described beautiful exactly how I do, how I want my daughters and nieces and nephews to grow up and see beauty. It wasn’t about my killer boobs, my awesome hair or my skinny-nonwobbly-bits filled body… it was about Me. It was about confidence, personality, inner beauty and physical beauty. How could I be embarrassed for someone saying that I am beautiful?

I fell into that little hole that we all fall into, I didn’t even say thank you at first. I broke my rule that I remind all of my friends about- Just shut up and say thank you. If I give you a compliment I mean it, if I don’t like your dress I and I compliment your shoes then I love your shoes. So when I compliment a friend and they discredit it hurts my feelings, so I tell them to shut up and say thank you. So… I caught myself doing what I get annoyed with. So I said thank you and let people post kind things on my wall and tell me I am beautiful. Some parts of that are hard to believe… isn’t that weird? I think God makes everyone beautiful, whether you look very different or have diseases or experiences that change your looks. Part of that is part of your journey, kind of like Nemo, it is just part of being Nemo… figuring out how to function at being different. I strongly believe that the things that make us ugly or dark or unattractive inside and out are products of choices… in fact some of the most attractive people are not attractive when you know them or see their inside self. So we are all beautiful… or have the ability to be.

So today am honored, especially after hearing the segment. I am blessed to be me, the exact me that I am supposed to be right.this.very.moment. Thank you for telling me something about me that I wonder about sometimes, but I know inside of me that I kind and loving and confident and bold and beautiful and silly and caring and me. I do. I need reminders when I feel like my inside beauty is very tied to me wobbly bits… I need reminders when I have a week of sick kids and feel low… I need reminders. I am thankful for the reminder and for the love. Sometimes, in all of these hard experiences, we can feel so far away or just icky… but I am loved. I am loved always by The Big Guy… by my girls, my family, my friends and my herd. I am wrapped up in amazing people all.the.time. I am thankful for the blessing of seeing and knowing that. I am thankful that I can generally see this awesome and warm blanket that God has wrapped around my life, even in the darkest moments and times. I am thankful that there is ALWAYS light in my life.

http://blog.timesunion.com/ontheedge/ote-on-the-fmr-the-capital-regions-most-beautiful-woman/60050/

So thank you Kristi, thank you Chrissy… I will not pick myself apart but instead I will shut up (after this post) and say thank you.

Adventures await, still.

 

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My lovely still goes on adventures… indirectly, but she does. I went up to Madeline’s Spot this week to clean up and rake, to declutter and check out her tulips that are coming up. I brought with me some bits of adventures from the winter for Madeline. I know that she is with me and many others all.the.time. So when I or anyone else goes on adventure or trip or deployment and they send something for Madeline I know she is with them. I know they are bringing her for their little or big journey.

I cleared her spot, with the help of Cousin Tara, and then prepped for the ‘souvenirs’ from this year’s adventures. I had some good stuff… bits of earth from all.over.the.world.

I set the blue lapis rock that Molly sent from Afghanistan for Madeline. It is neat to know that she has a rock from Afghanistan, a place so foreign to me. It is such a beautiful stone, smooth and so blue. I guess I never knew rocks there looked like that, but sometimes I realize I am a little ethnocentric in my knowledge of places I have never seen or thought much about. It opens your brain up, just like travelling. It is great to know that a bit of such a foreign place is up there, on Prospect Hill. Molly has the stories and the vivid memories, the photos but she sent some for Madeline. She is carrying Madeline there and in a way showing her things she never got to see. Madeline has wings now, so I am sure her flying is much cheaper than United or Southwest… but I know that she is experiencing Afghanistan with her Aunt Molly.

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I poured the water bottle of sand from Nassau, Bahamas in front of her stone. When I was on my cruise this January I brought Madeline some sand from the beaches in Florida and Nassau. I wanted her to get to really experience the difference in those sands and paradises. It made me think about the sunset while we were there and the awesome orange and shadowed trees along beach and road. It was spectacular. I thought of her there, of her getting to see that. I know she did, she sees awesome all.the.time. It is crazy, because she is in paradise. I just want to know that bits of the earthly adventures reach her. I know she is all good, she is in a perfectly safe and warm and beautiful place. I just love knowing that she sees, feels and goes on these adventures along with us.

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I opened up the big Ziploc bag that my friend’s boyfriend helped me with, since I collected sand on the beach in Florida with a Benadryl box… so I could bring it home. I dumped it and bits of the crab shell I brought home for Lucy fell out. They broke it at the airport so the shell wasn’t whole… but it was kind of great to leave Madeline a bit of something really cool I found for Lucy. I dumped that sand in front of Mad’s stone and thought about the long hours I wandered that beach. I just kept looking for shells for the girls and people watching… I looked at the ocean and listened to the sound of it all. I took it in. I left some of that there, up at her spot.

I added sand to her sand, it is darn sandy up there on her hill. Her adventure sand is welcomed though, to the sandy dirt that mostly grows thyme… to the tulips that will be purple and lovely soon… I added bits of adventures, mine and others, to piles of adventures at her spot. She has rocks from trips, magnets from Finland from her dad, water globe from Annapolis, stuffed animals, a name license plate from her dad that was from the last trip to Hoffman’s Playland… just many adventures, many experiences, many bits of life she is carried on and with.

What is life with no adventures? I don’t know, I think mine is chock full… never boring, book writing kinda stuff. What is death with no adventures? I hope I never know. I hope I travel tons and wear out sneakers in races… I hope I sample food I am scared to. I hope I climb big and tall places and bring bits back to Madeline to add to her little collection. I know she doesn’t need the souvenirs, she is here and there and everywhere… I just know she loves taggin’ along.

 

❤ you darling. I freaking miss you. You are my sunshine… 1/3 of my sunshine.

 

Commitment-Phobia

I have been working hard to find a way to do what I love, fit life in and support my girls… blogging for Everyday Life has helped me do that.  It is a step to me being more independent and doing what I love and was made to do- write, share and connect.  So help me share my words on Everyday Life and Climbing Up the Polka Dot Tree… help me share on Facebook… Thank you Polka Dot Tree Climbers YOU ROCK…. onto article 🙂

 

http://everydaywindshield.com/commitment-phobia-by-erin-musto/

… it once was a nursery

A long time ago it was a nursery… it was the place that all of my Musto Chicks began their journey. It was the room where the ‘Sleep Sound in Jesus’ CD played over and over… where I read to and dressed and changed and rocked my girls. It was a peaceful little room created for my girls, before I ever knew that I would get three girls. I remember the nesting and the prepping… ordering sage green toile and shutting the door while Matthew assembled the furniture (I hate assembling…)… I remember sitting in the rocker pregnant wondering what it would be like when we brought someone home we were responsible for. I could never have even imagined what that would be like.

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… and so it began in that little back bedroom, where my girls all started their journey from fresh to baby to toddler and then kindergarten. The nursery officially changed roles the week that Madeline was diagnosed with DIPG. Madeline wanted to go to the cottage that we would rent in the summer. It was a tiny little cottage with a tiny bedroom the girls shared. She loved that it was a little bit grown up and it had a TV. So in the day after Madeline was diagnosed our Mountain Movers took apart her crib and put it in the garage (it is now my nephew Reaner’s so my girls bite marks will be a part of his growing too…). They packed up the nursery and put in a bed and new curtains and a TV… it became Madeline’s bedroom for one night.

My girls slept together for a long time, don’t tell their Pediatrician Lucy was out of her crib so early, but my girls slept on a double bed every.single.night. I don’t know how they did it, it was a hot mess of tangle little ones… with stuffed animals and blankets next to them. It might have been a favorite part of my day to walk in before I went to bed and see my pile of Musto Chicks peaceful, fed, sleeping and quiet (don’t judge me, you all know the feeling…). There were a few times during Madeline’s sickness, before she was diagnosed, that she chose to sleep in the nursery in the reading nook corner propped up and with no sisters. It was a rare and strange request, that I understand now.

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So… the nursery graduated to Madeline’s own bedroom and she slept in it one time. She woke up with Matthew on the floor and told him that she was glad that the girls couldn’t mess up her bed when she made it… she enjoyed her one night.

After Madeline died the girls didn’t really want to sleep together. I didn’t press it. Lucy took over Madeline’s room (the nursery) and Amelia kept the bright bedroom. I didn’t make too many changed over the past few years. Amelia got a vanity for her things around Christmas so I got her mirrors and hung things that were more mature. Lucy’s room (aka Madeline’s room and the nursery) remained pretty simple and unchanged. I felt she needed a change… that she needed something that was hers. That let her have some super heroes and alligators, blue bedding and less young and fancy. I wanted to Lucy to get a room that was more her… a bit tomboy, funny, animal lover and clutter collector.

So last week I took that on as my mission, to paint, rearrange and prep Lucy’s room fit for her. She loves it. She got to see it this morning and gets to sleep in there tonight. It feels more organized and more open. It definitely feels more ‘Lucy’.

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So, like I always say, life keeps moving. We keep living, breathing, changing, building, hurting, healing and growing… or kids do the same. I no longer have a nursery (a play pen, jumpy, bouncy seat or childproof things so be warned)… I am that lady that has older kids. What a weird stage to be in. I remember I could.not.wait to be here… I was jealous of those moms that could sit and drink coffee and watch their kiddos play. I would chase and run and catch and push them on the swing. I would be pooped out and sun tan and eat a bag of goldfish at the park. I am now that mom… who can sit and chat and tell my kids “bubba, little deal or big deal???”… the funny part is I get into my car, a little suntanned and having eaten goldfish and snacks… and actually getting to drink my coffee with no sand it it at a hot temperature and I am still pooped. It is a dilemma I do not understand. I don’t know how I can be as tired watching my kids play and catching up with a friend that playing… but I will think about it next conversation in the park. So now I am here, in this very spot, with a little bit older kids… terrified for the next stages- periods, friend drama, broken hearts, cell phones… I am terrified. Like I always say though… life keeps moving… I am going to get there and we will hopefully get through it and move and live and breathe and learn… that is what we do.

So from now on there is no evidence of babies at this Musto house. There are just lovely and crazy and kind and cranky and growing Musto Chicks. They keep getting taller and bigger and more mature- even though I threatened them to “STOP GROWING.” They just keep living one more day and growing another shoe size. Crazy how life works, even more crazy to me that we all KNOW how life works yet it shocks us when it follows the rules and keeps moving.

So Erin, welcome to the next stage, a step away from life before and walls that Madeline lived in and touched… a step closer to the next things… a stage closer to calorie free birthday cake in heaven…

 

Hurdles.

Every once in a while I have an opportunity to help another share their story, journey or lessons.  I know how important it is to share different perspectives and stories… I know how important it is to write your thoughts and share them.  I am thankful and honored when another trusts me to share their thoughts on my page… it helps us grow and heal and find support.

This is a guest post from a mother who has a child with cancer… a little one who fights hard now.  She asked me to share, I will ask you to do the same.  Send her thoughts, love and support for her and her family as they jump the hurdles and get through this… send them vibes and strength for the next challenge.  So enjoy a guest post from another mama… with a different journey…

 

Hurdles.

I was never a hurdler in school; I was a sprinter. I am a sprinter.

I liked fast and smooth- clear sailing to the finish line. I did not like things getting in my way. I still don’t.

The funny thing about life is that you do not get to choose your race or your path. It is handed to you and you are to get through. I do not get to sprint in this life but instead- Cancer has become my hurdle.

The thing with cancer is that it is not only the disease that wears you down, but all the other obstacles that come with it. It is even worse when cancer happens to your child.

Like any parent, I would take away all the pain, fear and anxiety in a heartbeat. There have been many days where I have begged and pleaded for this to happen. However, that is not my assigned lane, my race. The finish line is in sight, but you are tired and don’t know how you are possibly going to be able to finish.

Soon you are left with horrific memories that, no matter how hard you try, won’t leave your mind. They haunt you, try to hold you back. Those memories and fears are the wind that you can’t seem to break through. Just when you are approaching the finish line, the end is in sight- you are left with thoughts, a broken spirit, a child with anxiety, a child who was forced to grow up too fast and a marriage that is forever altered.

All of these things are waiting for you at the finish line…. Torn into shreds and broken. Somehow, someway, you must find the strength and courage to piece these things back together and continue on with life… a “normal” life.

Suddenly, you realize that there are people who are cheering you on over those hurdles, have been since the beginning of this race. Helping you, guiding you and pushing you. They can’t move the hurdles out of your way, but they can hold your hand as you go over them. You will get over them. No matter how tall and scary they seem to be. You will put those torn pieces back together. They will not look like they did at the starting line of the race- but they are held together and so are you.