Living Different…

I am not like most people. This thought has passed through my mind so many times over these last few weeks. I have always known this, I don’t know why I was comparing myself to others, anyway. I just feel like I am really popping out of the mold these past weeks.

I have never really fit into a mold. I didn’t fit into many groups that well in high school, until later. I usually could hide myself in a club or extra credit projects. I tried sports, but I lacked talent and the ability to stay confident when I failed in front of a crowd. I was able to become a different ‘me’ in college, with new peers and relationships. Moving to Albany and working opened a place to get to become another ‘me’. Parenting and grief and living have proven to be kind of the same, I definitely don’t do it like most.

When my girls were young, in those hard years of 3 littles, we treated the days like adventures- trekking to new places, bringing Lucy along even when she was only moments old. We found creative ways to stay busy on the cheap, and we were notorious for picnics in the snow. I never called my girls ‘normal’ names… Lucy was my little ‘Lucy Bean Butter Buttface’, Lucy Bean for short. I would dress them up and pose them in funny pictures, including Sparky. I would bundle them up and walk in the winter, and remind all the old people who stopped us that cold doesn’t make us sick, germs do. Funny thing is… my girls were so exposed to germs from all the crap they licked, ate or swallowed I knew they had kick ass immune systems. It is how we survived that time back then…

I laugh thinking about how I would watch my friend’s kids play… they were quiet and kind, never putting toys in their mouths and playing so nice. Then came my kids… who licked and ate everything. I used to tell myself- ‘No big deal, at least she didn’t lick Walmart’s floor’… then one day we walked in and SHE DID JUST THAT. I was humbled… and again chalked it up to an immunity builder.

I have never really fit into a mold… no part of my life does. Lately I have been beating myself up about it, comparing my ‘self’ to others. The thing is I am different, I have a different life with different blessings and broken, I have a different perspective, different views and different building blocks. I have a pretty extraordinary story, one that most have nightmares about. I love my story…

Today the girls and I delivered a package to a little girl who has DIPG and her family. If you ever need to remind yourself how fragile life is, this moment should be your reminder. As you read these words your brain should be thinking of the important, the stuff your life should be full of. This is a hard thing, because I can’t tell you what your time should be filled with, but I do know what my life needs to have. This is where I am different…

I love to watch my daughter’s do what they love, I love to watch Lucy square up in the box and hit a power ball. I love watching Amelia’s grace as she dances across the room. I love when they work hard for the Science Fair or create masterpieces. I loved watching Madeline work so hard to read. I also love burrowing under blankets and watching movies, baking, teaching church school and down time.

I love to watch them do what they love, but I don’t want to do that all.the.time. I don’t want to play 3 baseball games in a weekend, or go from one practice to the next. I don’t love to end a weekend as stressed and tired as I started the weekend. We need downtime in our family.

I have wondered lately, why I am not like so many other parents. I wonder why I don’t push Amelia to dance more, or participate in competitive cheer. I have wondered why I don’t care to go to 3 games in a weekend, some an hour away. I have wondered what is wrong with me when I can not keep times straight. I have wondered when I will fit in…

My brain kept reminding me that this is not the job for me, for us. We don’t fit in, we do our life and time. I was reminded of who we are, what our story is and who I am building. I don’t need the priorities of others, I need the building blocks of Musto Chicks. What works for others is not made to work for me… what works for me doesn’t work for others.

I think some of the pressure comes from the article I read that many shared about why they don’t pay for their kids to play sports- but instead for them to learn lessons they will need in life. It made me feel some guilt that I don’t push enough. I see those families all filled with sports and practices and games and camps and lessons and workshops. I see kids in music lessons, tutoring, extra clinics and nights of tumbling or stretches. I get it. I just know that it isn’t for us…

I am building those skills in a different way. My girls meet families going through the hardest things, they have learned to serve and care for others in a huge way. Service is built into so much of their time. Faith is a priority in our family, we live and learn faith. Thursday nights are a night I hold high in our house- church school. I know that the lessons learned in church school (or faith formation) will be there when the life doesn’t go as planned- when you break your arm and can’t play baseball, or fall at your recital or you lose a sister. Faith will keep us afloat when hope seems far away. That same backbone of faith grants mercy and grace to our hot mess selves.

My girls are still little, I want them to be little for longer. I want them to just be home and ride their bikes or shoot hoops. I want them to go to the school dance. I want them to learn to fill their time with things that help build them to be who they are meant to be. Soon they will be bigger and sports and commitments will change- there will be pledges to sign and double sessions to prep for the season. There will be clinics necessary to wear Point shoes, or pitch better. For now… we choose simple. For now… we choose different.

Today the girls and I delivered and hung out with a lovely lady who has DIPG. She will soon join Madeline. In moments her life and her family’s life changed, like ours. They are living life full of moments that matter, moments that build and moments that will have to last a lifetime. Are you living that way? Are you stopping to enjoy your family, celebrating your blessings, applauding your differences, building great people? Are you running from one place to the next, birthday parties and dance lessons and 3 sports teams, leaving your family last?

If tomorrow your world changed, are you happy and in love with what you are building?happiness-quotes-160-508x408

Advertisements

DO SOMETHING…

 

“So, I shook my fist at Heaven

Said, “God, why don’t you do something?”

He said, “I did, I created YOU.”

If not now, then when

Will we see an end, to all this pain.

Oh, it’s not enough to do nothing- It’s time for us to DO SOMETHING.”

 

October 20, 2017- The day DIPG stole Devin Suau’s life here on Earth.

I got to sit and talk with Devin’s mom talk about his life, about the perfect timing of his birth and his ability to sense her pain and soothe her. He was the youngest of 4 boys, a definite accidental 4th– but then again life is never an accident. He loved super heroes and was a naturally gifted snow boarder- at the age of 6. Christine, his momma, described him so beautifully, his kindness and simplicity. He reminds me a lot of my Madeline- minus the snowboarding, she would have definitely stunk at snowboarding. Christine is doing something, something big.

Fast Forward to October 20, 2018… one year of missing, one year of the pain and broken and wondering… Devin died one year ago.

Christine described the last hug she and Devin would have, what it felt like and how he woke up and initiated that beautiful hug. It was like a comforting hug to remind his momma he was still carrying her in the pain. It was her last hug with the Devin that she carried and built and loved and laughed with, the last. The pain of those moments is enough to knock anyone down… rightfully so. The brokenness that is left behind is big enough to fall into and never return. The missing she now owns is enough to feel like your entire self is missing… like you are no longer here.

What you do with the pain, the broken, the missing is part of the process… and I believe part of the purpose. DO SOMETHING. Those are powerful and bossy words, words that require owning something and working to change it. When you experience things in life they point you in a direction, when you live through the DIPG journey you know the direction you must go. Devin wanted his momma to DO SOMETHING…

October 20, 2018 is not only Devin’s Angelversary, but is also a day to spread kindness. Often you see pages and fundraisers and stories, you see people in the community broken or ill, and you want to DO SOMETHING but you may not know what to do. You feel compelled to DO SOMETHING but the world gets in the way, your bills steal all your extra money or you have 100 things on the day of the gathering… or maybe you aren’t sure what to do. I am giving you clear directions as to how you can help DO SOMETHING… and 100’s of people out there DOING SOMETHING is world changing. You will know that you are a part of something bigger, a story with a purpose- a little boy that was created to change something and inspire people to DO SOMETHING kind and good and beautiful.

DO SOMETHING.

October 20, 2018 is a day for you, all of you, to DO SOMETHING. You can keep it a secret and just put the kindness and light you just brought into the world in your soul pocket- or you can share it here for Christine to see Devin’s impact. Either way- DO SOMETHING… something BIG or little, something easy or difficult, something outside your normal comfort zone. Who knows what God has planned for your act of kindness- maybe you’ll see the impact or maybe you will start the ripple. Go out there is DO SOMETHING… a coffee for a mailman, a snack for a homeless person, bring hot cocoa to the soccer parents, a chat with an older person, Dinner delivery to a sick family, donate to a charity… whatever- just DO IT. Share it or don’t… if you do #whynotdevin and smile knowing Christine can see it and know her son’s impact.

I am asking every.single.one.of.you to share this and DO SOMETHING… because, in the words of Matthew West, ‘It’s not enough to do nothing.”

devin

Light the way…

df0b719674e2a440b7a47a0882ff07eb--lights--corinthians

The world feels so heavy and painful these past few days. I don’t know how to process it all. I am sure these feelings are what everyone is feeling. I just keep thinking about the passengers, the pumpkin pickers, the parents…

My brain won’t stop thinking about those kids who kissed their parents as they headed out on a little fun adventure, of those mom’s who are waking up without their daughters and sons. One mom lost four daughters… four daughters. I can’t fathom, I can’t understand, I can’t figure out what to do with this sadness. No one can.

…Just like that the 500 pound ‘person’ is sitting on me when I sit down in the chair in my living room. I close my eyes and I can just barely feel that mom’s pain. One day celebrating your daughter, the next four daughters gone. I can’t get it out of my mind, not that I should. This is a catastrophic loss in a community and beyond.

The world is short 20 people- most are described as kind, compassionate, positive, fun, real and special. Most were friends, all together to celebrate.

I wish I knew what to do, how to make the impact softer. There is nothing to soften this… nothing can carry this weight and pain. Nothing can lighten the load for those moms, dad, kids and the whole community.

My girl’s father immediately said “Erin driving is the most dangerous thing we do.” I reminded him that I know. The thing is driving is a necessary for us to live well, to adventure, to visit family, to see new things, to be a team and to earn a living. Living well is important, so IMPORTANT.

Life is meant to be lived. I wish we could erase Saturday’s tragedy from history, and those 20 people were back to their lives and jobs today. It can’t unhappen though… I can’t understand or make sense of it, but I remind myself that is not my job. My job is to live well- to live well and bring those passengers and pumpkin pickers along. My job is to be kind, be caring, stay positive, have fun, be real and bring along their special. My job is to try to be a light in the darkness for others, just like others lit the way for me.

In a world that is heavy and full of pain… a world that makes no sense, not even an ounce… in a world that just needs light- go be the light for those who need the dark path lit. Light the way for those mommas, dads, kids and community…

Our Sparky Elizabeth Musto

IMG_20181005_092710On Friday morning Sparky Elizabeth Musto joined her sister Madeline in heaven. Sparky was born in November 2004 to a pretty awesome set of parents. I remember meeting her, I remember watching her interact with her siblings… they would all come out of their little area and she would go back up to the top and defend that space- she was my Queen of the Mountain. When I see pictures of back then we were babies… Sparky grew up with me, though she grew older sooner.

The day we picked Sparky up from Gilpin’s and she left her mom, I felt sad for her and excited and nervous. At that time, imagine that feeling of bringing a baby home. She was the most fragile and tiny animal I had ever held, minus Cortney’s hamsters. We brought her to my parent’s house and Matthew’s home… introduced her to her family. Then we headed back to Albany… through snow and all of it. It was dark and snowing, and Matthew hit a deer on that trip. I just sat in the passenger seat with my tiny little bundle, crying because the deer had to be put down. After that we shakily drove home to out new little house…

Sparky lived through it all. She was my buddy when Madeline was born, then Amelia and Lucy. As Madeline grew the bond between them grew… Sparky become Madeline’s trusty sidekick. She endured so much poking, dressing up, getting carried, licking cuts and even snuck in eating some diapers. We spent our days together walking, snuggled and playing in the backyard- the girls swinging and Sparky digging holes.

Just like Madeline, I can tell you Sparky’s best days were spent swimming in Lake Ontario. She would be in the water all day, only stop to bring you her large branch and mini bark until you threw it back into the water. So many times, the waves got big and she would keep that branch in her mouth and you would only see her tail… she would have rather died than lose her branch. We visited the Lake last November, Sparky enjoyed her last trip to the shores of Lake Ontario at Wilson’s Point. It was cold, but I knew it would be her last time… I carry that.

I remember the night Madeline died, I ran upstairs to grab a hoodie, then ran back down. I was behind Matthew as he carried Madeline to the car to go to the hospital. I knew Madeline would never cross that threshold again… I left here with a huge sadness that Sparky would never even get to say goodbye to her. How it must have been sad and confusing for her, one day her Best Friend was here and another that scent and that voice was forever gone… it has always bothered me. I saw a medium one time, she was amazing. She was super not what I expected, I mean her cat did reiki. She told me that Madeline had come to Lucy and told her that Sparky was to be hers to love and take that place. I didn’t even ask this… so I know it was Madeline letting me know. I could see it before that day, I could see Lucy taking on this important job. From the day Madeline died until the day Sparky died she was Lucy’s Trusty Sidekick.

These years without Madeline have been full of new and different for me, the girls and for Sparky. Matt and I got divorced. Sparky lost her guy, and on the occasions she got to see him and the rare occasions she got to travel to hunting camp she was in her glory. As per normal life is hard…

These last few years have been really hard, hard for all of us. They have been hard on Sparky’s body, and our time. It has been hard to travel with her, or find people to help us with her, she hated the time I was at work, she was used to me being home.

In true Musto Chick from we worked for a time to make sure that Sparky’s time here was filled with Best Day Evers, small ones for her to enjoy the time she was still here. Lots of walks, a Kong filled with peanut butter every morning, ALL leftover meats put in the dog dish, Wendy’s bacon cheeseburger, snuggles and lots of digging time in the back yard. At 14 years old Sparky could still throw a ball and find it, she could jump on furniture like a spritely, young dachshund. She was, for the most part, still Sparky up until she was not here.

On Friday morning a very kind and compassionate Vet came to my house. He calmly talked to the girls, Matthew and myself about what would happen and how Sparky would be comfortable. I once again sat and watched my girls send off a family member to heaven. A part of me wasn’t just sitting in this living room, she was in the hospital room, singing Madeline into heaven… a part of me was utterly broken. I know the drill… it is forever broken; my life will just build around it. Friday morning felt a lot like that cold February morning, only we were on my couch and we had an ounce of control. It felt like Madeline in that sad and beautiful way that death can touch.

I have struggled this weekend. I stayed super busy, I didn’t choose to go find people. I put it in my brain to fin order in chaos… to neaten up the messy that the last few years of Sparky’s life left. She didn’t have control, but now I do. I painted the laundry, filled in the door that she dug, replaced the cushion on the chest she loved to lay on. I worked to find order in chaos… which is my pattern in grief. It is almost like nesting… even Friday morning I was nesting. I knew I needed to prepare for the time to come. So, the house got clean, so that my brain could focus on the hard thing in front of it and just stay in the moment.

Life is hard. It is beautiful, right next to the beautiful is pain and hardship. They all ride next to one another. Today I sit, after all that crazy work, and I reflect and I cry and think… and wonder will I ever open my home to another dog…

… But I know the answer- love is worth it. Love is worth all the grief and pain and broken and hurting. I work with families who are going to say goodbye to their kids, I sat and played board games with a little girl who will meet Madeline soon. It hurts, but I could never trade that hurt in for easy- love is not easy, but it is worth it. Someday our family will meet our next Trusty Sidekick and we will love again…’