I saw me.

Imagine, going to a place to see and meet ‘you’ about 15-18 years ago… Imagine what you would say and what you would think seeing yourself as your cute, messy and shy tenth grade self.  I got to experience that today… in a way.

Recently I was asked if Maddie’s Mark Foundation and Maddie’s Elephants could be the NYS Leadership Project for the 2014-2015  for FCCLA (Family, Career and Community Leaders of America).  When I was involved it was called FHA (Future Homemakers of America), until we voted to change the name to more correctly represent the mission.  I couldn’t wait to share Maddie’s Mark with all of the teachers and leaders that I remember admiring and learning many skills from..  I felt honored and blessed, like a circle was complete.  I felt like all of the work and skills I learned and the time I spent were coming back to me, Maddie’s Mark and my girls.  I quickly agreed and shared with my team.  I packed up my Foundation stuff and Elephant materials, Amelia and Lucy and headed out on an adventure.  We zipped outta town… I was determined to share with my girls something that was really important to me and I feel helped me become the person and mom that I am…

We got to town, checked in and headed out to look for the conference center.  I saw my teacher from High School, Mrs. Thomas, and hugged her.  I couldn’t wait for her to tell me the plans and times… I was excited and anxious.  We got there in time to go to the park for dinner, a chicken BBQ.  The girls and I walked to the park and sat for dinner.  We were kind of by ourselves, since we got there after most had connected.  It didn’t take long to see and think about the way I was at that age.   I had a hard time gauging the teenagers ages, I am much better at young kids now and spotting an 8 year old as opposed to a 14 or 12 year old.  I guess I will know when I see and know more teens… I watched them interact and talk and eat and play… I saw them be confident and bold or shy and reserved.  I saw them dressed crazy and dressed conservatively.  At the end of dinner we watched them do a Group Activity- Lip Syncing.  I remember these team building activities, I remember me.  I was the girl who stood near the one who would sing loud, or dance well… I was do the minimum and try not to be heard.  I would attend these seesions on speaking, leadership skills, parliamentary procedure and others and write notes galore.  I would listen and take it in.  Then I would go back to my district or group and meet some new people, cringe at the team building techniques (for fear I would be terrible)… and stay shy (not quiet, but not confident).  I listened, I learned and I was too scared to practice what I learned.

Fast Forward to now… Imagine walking into a group full of teens, some of them just.like.you.were.  Imagine getting to say to them all that you have learned on the journey you have been gifted.  Imagine sharing the parts of you vulnerability and the skills you learned.  Imagine, maybe- just maybe, one of those girls might be just.like.me a long time ago and need to hear how these skills changed my today and my journey, and also how I wish I knew my worth back then.  I wish I knew more about the me that God made… how bold she was, how her voice meant something, how she was made for something different, how she would be gifted great and amazing and also faced with loss that is bigger than most can imagine.

What an awesome experience to get to see me, before I was this me, heck before I was a lot of me’s … I was excited and nervous to talk and share and help them set up and organize how the Project would work and what the goals would be.  I talked about Madeline and my history with FHA/FCCLA, I talked about the Foundation and Madeline’s illness… I talked about our Maddie’s Elephant’s and how important they are to me and the Foundation.  I told them how the skills I learned in FHA/FCCLA helped me to not only be the President of Maddie’s Mark, a good mom, sister, friend… and all that jazz… but also to move, live, breathe and survive the challenges I have had in this life.  I assured them that we will all have our challenges, blessings, opportunities and experiences in leadership- and that what they were doing today would really help in those things, all.of.those.things.  I told them about much of what I learned and how the skills helped me… and also how I wish when I was their age I knew I was made to be me.  I told them I wished I had the confidence then, that I had to knowledge then… and that they should love their voice, their bold, their different.  I had this chance to say to ‘me’ back then that this would be a great tool in life- but also that they should… get uncomfortable and know their voice matters.

I don’t regret things in this life.  I know that I am right where I am supposed to be.  I am where I am now because of a series of life events and choices that got me right here.  I am made for right now.  The skills I have now- people skills, leadership skills, organizational skills (though I am lacking) have been in me for a long time.  I am so glad that I have the bold to use them now…

Thank you Mrs. Thomas for the encouragement and support back then and now… Just as Mrs. Weiman helped me be confident to write and share, Mr Gaffney to love biology… you helped make me this very Erin…

It feels like a good day…

I woke up today feeling like… damn it is going to be a good day.  I got in a great run with my B… mowed the lawn and am getting yard work done.  I feel pretty accomplished, my bedroom is clean and the bathroom is on it’s way.  I swear there is nothing like chucking chaos and kicking messy’s butt.  I mean it.  My head works better when my stuff is done and my space feels more peaceful.

It was a weird and hard week.  I guess we could say a mini bomb went off and I need to process it.  I keep wondering when I will be more disconnected from these bombs… when news or change wont blow up and hurt so much.  I think it is part of process.  It has also taught me that I need to sever and maintain my wall.  I am safest behind the wall.  I need that wall to dodge the hurt from people who shouldn’t still be able to hurt me.  I need to create a wall so I am impervious to manipulation, hurt… all of it.  So I made a note in my brain to get-to-chugging on that very thing… the strong wall that helps me get healthier and better.

It is hard to build walls to keep put those you welcomed and loved being in… but I will say the energy in my life is so.much.better.  I don’t think I knew it was bad.  When you are standing in it and it is your normal, you see it as normal and good… but there was a lot of bad energy in there.  I didn’t know what kind of damage it had done… I am learning.  I am holding on to the ones that have that amazing and strong energy.  I am seeing much positive in this… and am glad many times a day that God cleaned house…

So today is a good day.  I miss my chicklets… but am going to enjoy a quiet day and get work done.  I will love reuniting with them in a couple days.  I will work out and clean and go out… I am looking forward to a bonfire with a friend and some good conversation (no sad junk though… or it’ll owe 10 push ups and 10 jumping jacks)… so it is a good day.  I am letting go, sometimes very consciously, of the new bomb.  I ❤ good days.


you will let go heavy

I feel like things have changed some, inside my brain and heart. A couple months ago, and in recent months before, there were big ice cubes or sugar cubes thrown into a not super perfect or stable glass of water. I felt today, in the quiet part of the drive home, that the cubes are dissolving. I actually felt my mind making this parallel. That things were breaking apart and becoming more clear for me. My brain even visualized something big breaking down and becoming a part of a new mix.

I thought for a bit about what that thought and visualization meant. I think it means I am losing some things and gaining others in order to create a new… normal/glass of fluid. I guess maybe it means I am incorporating the big blocks and processing… I can’t recall some of the moments in my marriage that I felt love… I can’t feel them. I can’t remember things that I used to bring to thoughts fast. I can’t remember the feeling of love I have or had for Matt. I think it is a part of the fence I have been building and maintaining. My heart has a quick strong memory, a moment of sad and missing and it is gone. I remind myself- fence, good dad, stay safe, stay in my lane, move, live, breathe… It is a comforting and hard place to be. It is weird to think that in all of this time this is what IT all is. I guess that is what must be right now. I can’t be friends or a team… just people. I must maintain my fence and keep it clean and white and sturdy… if I fail I let hurt in. I cannot let hurt in from this right now. I have hurt to sort through, anger to put in safe and good places and sad to think about. I can’t let more come in. I don’t have a gate in my fence right now. Maybe someday…

I think my brain is working really hard to find it’s place in this. To find the me that goes forward, to help the me that wants to stay put and to pick up the me that moves backwards. Today’s visual and thought were huge components in me knowing I have progressed and changed and moved forward. I see progress. I am slow, but I am moving. I am thankful that I had that thought today I needed it. Sometimes when a person is standing in something or in a moment, it is very hard to see past that very moment. I know my moment (weeks, month or year) looks long… but it feels like a moment in life that I was standing in one spot… in a situation that I didn’t know was going in crazy crappy circles. It is a good feeling to see improvement.

❤ Thank you God for the visual in my thoughts. You knew I needed it.

We are Champs.

I know, it sounds like I am going to start belting “We are the Champions… no time for loooosers ‘cuz we are the champions… of the world”…. but you would be wrong.  I am referring to a program, or I guess family, joined just after Madeline passed.  Matthew walked into the Guilderland YMCA that week after Madeline died and was told by Karen “Don’t worry about anything here, you are a part of Champs and we’ll help your family”.  He came home and told me we were a part of the Champs program now… I was like “what is the Champs program???” … then life moved and I forgot and we got busy and my brain didn’t really think about it.  A few months later we were invited to Champs Camp… and I was finally learning that it was actually called CDYMCA Circle of Champs and was run by this amazing and energetic Sandy .  I started to understand, in all of my fog, that the Circle of Champs was a program for kids who were faced with illnesses, their siblings and their families.  It was more than a camp, more than a program… it was a family.

At the first Champs event the girls and I attended, a BBQ, we had so much fun.  I met so many families and kids and laughed and danced and ate too much (no joke the ice cream truck came…).  I also met Laurel.  I remember Karen (the director then) introducing me to Myles mom, and knowing that Myles had the same tumor as Madeline.   Laurel had been dancing with Myles and just was a ball of energy.  I was nervous to go up to her, being that I had the daughter that died of the same tumor.  She hugged me… and she told me “Ill need you on the other side”.  She wasn’t scared of me because my daughter died, she wasn’t nervous to say the wrong thing.  In fact, I was in a BBQ party of many people who weren’t scared to hug me, talk to me and didn’t treat me like I was ‘worst case scenario’.  My girls were surrounded by awesome kids and families with crazy journeys- just like our and not the same at all.  Every.single.family in that room was impacted by life threatening disease or conditions… all of us were on equal ground.  I realized that night what being a Champ was, what Circle of Champs is.


After a week of camp, of tired and happy Musto Girls we had our BBQ tonight.  There is always great food, great music, smiles, photos, dancing… just living.  No one there was the same, but in some way were all equal.  We were all laughing and enjoying and sharing time, experiences and life.  This week my girls were surrounded by friends that were travelling and fighting their own crazy journey, battling their fight, building back up… but they didn’t.even.notice.  It wasn’t about that.  It was all about sunny days and camp activities and crafts and swim… teamwork activities and field trips.  It was all about being a kid, just the regular, sometimes complicated, kid that each of the Champs are.  I felt like it wasn’t about their differences, but it was about each of them and their own selves… My girls had a great week.

I told the girls as we were walking up to the SUPER decorated pavilion, that this is their party.  This is a party just for Champs, that this was a special night just for the Circle of Champs families to enjoy together.  It was a gift from the CDYMCA and a lot of kind volunteers to my girls and the other Champs campers.  That is what Circle of Champs is- a gift.  It is a special and safe place for all of these kids, all of these crazy journeys, all of the hard stuff they all face- to come together and enjoy some time… to come together and smile, live, breathe, run, laugh, share, cry or not… to be the special person that this journey has made them in a safe place that honors and supports that.  We are Champs.  I am so thankful for the CDYMCA for working so hard to build this program and support this family… it is so amazing, special and necessary.

If you know a family in the Capital Region who could qualify for Champs, bug me.  I know what this family has been for us… it could be amazing for others too.

Here is a bit of tonight and my crazy, silly, bold and sugared up Musto Champs. (#ymca #cdymca #circleofchamps)

champs1 champs2 champs3 champs8 champs7 champs6  champs5 champs4

sometimes… all you can do is move a mountain, or better yet build a pool.

So… last week the world lost an amazing young boy… he was bright, happy and very smart… he was Elijah.  The first pictures I saw of him I saw a big smile and dredlocks… I saw happy and alive.  I didn’t see anything then that would show he was sick.  The truth, though, that he was sick was reality.  He endured treatments, got sick, got better… fought hard.  He always kept his big spirit and energy though.  Most of my connection and knowledge of Elijah and his spirit was from Laurel (https://climbingupthepolkadottree.wordpress.com/2014/01/25/the-other-side)… and I loved seeing her see Myles and his energy in Elijah.  I loved seeing her and her son take care of him and his family.

Fast Forward to these past few weeks… we had been sitting on a ‘best day ever’ with no real idea or perfect thing for the family.  Elijah got more sick and we thought an at-home, yard makeover or pool would be a great asset and ‘best day ever’ for all.  So we got chuggin’…

As  per normal, life and God didn’t follow our plan.  I guess the best way to say it though, is that they didn’t follow the plan- the way we thought it up.  Elijah passed away last week.  We did not get there in time to let him swim or sit with his family at the patio table.  I was sad about this… but I just have to know that God has something else planned.  We proceeded with the ‘best day ever’ and set it up tonight.  There were lots of crazy hurdles and it was 90 freakin’ degrees… but it didn’t rain.  I asked many times today for it just not to rain… for God to let us do this for them…  It didn’t rain or storm or blow.  We were also blessed with lots of extra water bottles… so we were all good.  I may have shed 10 pounds in water weight, but we all survived and worked and sweat.  We did it.  I honestly feel that Elijah helped this come together as a gift to his family… that he wanted them to have this little symbol and a bit of being carried…

What an amazing chunk of people, but also pile of completed work.  We were able to plant a garden, plant a veggie garden, build a pool (and level…), set up a firepit area, a gazebo and patio table for the family to eat and create a memorial garden.  My dad made the coolest and most perfect statue of Elijah sitting on a rock doing his favorite thing- reading a book.  It was so simple and sentimental and real.  I loved it.  I am so proud of the yard… I am so proud of my team, my amazing best.people.ever… just everything.  I loved seeing Lucy and Amelia set up their ‘job’ of manning the birdhouse/rock painting station.  I loved seeing Lucy collect worms (big and snakey ones…) and create a pocket in the bottom of her shirt to carry them around and bring them to the veggie garden.  I love that kid.  (again, I love them all equally…)

We came home so dirty.  I am so tired.  I am hot and have showered two times… but I feel good.  I feel a solid bit of good inside of me.  I love when you can see how impactful a mountain moved is.  I know, very directly, how those actions change and build your safe and carried place.  I am still grateful every.single.day for the friend of mine that redid our yard and did bathrooms over in my house… or paid for things and moved mountains for Madeline’s last days or services.  I don’t even know who did a lot of it… but they don’t care.  They are, most likely, real, true, best.people.ever.

Thank you everyone.  Thank you for prayers.  Thank you for respect and hope and love.  Thank you for support and knowing what these ‘best days ever’ mean… thank you for taking care of my family in every single way that you have.

Thank you God for today.  Thank you for holding off the rain, thank you for taking care of Madeline, Elijah, Myles, Onja, Devon… and many more that I think of everyday.  Thank you for it all.  I know You are with me in the good stuff, the bad stuff, the hard stuff, the simple…

Please enjoy a few moments from today… share and send love.




10 bits of a great day…

I was pondering titles and thinking of ways to share these pics and our day- and they sounded a lil’ cocky… like “I bet your hometown don’t look like mine” and “10 reasons my hometown is betta’ than yours”… but I thought those were unkind.  You know me… I don’t want to rub in that I am from paradise :).

So I guess I settled and went softer.  I will say there was one more bit that was awesome but there is no picture, a great run to my old high school and the easiest mile I have ever.in.my.life.run on that track.  Mind you I had a great running partner and awesome conversation about life and our girls… take that General Brown it has only been 14 yearsish but I got a good mile on the track with no walking or getting yelled at by Coach Fisher.  Onto the rest of the bits…


10.  Fishing, if only for 5 minutes (they have the attention span of flies… or maybe mice at this point)… Lucy had more fun seeing the fish on the depth tracking thingie.  We caught a whole lotta nothing… but I enjoyed seeing them test Uncle Damon’s patience… real world training for the new Kirkby baby who cooking.

59.  Just going through ‘The Narrows’ and a family of geese are travelling in front.  I know exactly what Lucy is thinking… ‘can I catch one???’

108.  Love me a Meme in a hat.  She was wearing Ethan’s hat so he could jump off the docks and get cooled down.  He almost got thrown in by Uncle Damon, but we thought he should empty his pockets and be prepared to be thrown into 20 feet of cold river :)… and there were some VERY interesting strange touchy feely people on the end by the ladder… the kind that you just wonder why they think it is ok to act that way on a public dock… darn young people- hooligans 🙂 (oh crap I am old…)

97.  I love collecting rocks… every time I go to the river, the lake, the ocean… pretty much any beach I collect things from it.  These were all so bright orange in the water, they are for Laurel.  I told her she needs to come visit home and see bits of Myles up here… so this is a bit of Myles in the cold and clear St. Lawrence River.  36.  This is a bit of my crazy family… random nights.  We spent the night before with all of the cousins at my brother’s swimming, eating and laughing while watching corny you tube videos (OMG I found my ‘mom idol’ in the always commercial for the first moon party… check.it.out).  This family bit of a great day, happened in Clayton.  After a day on the boat we met for dinner at a new Brick Oven Pizza and a walk around Clayton.  My family is funny.  We can pick on each other for being clutzes, follow Cortney around and tell her is waddling, listen to Hayle say random things… watch the girls love up on Ethan… and of course interrupt, yell a lot and stand in people’s way… but it was fun :).25.  I love New York.  I love New York.  It is full of high taxes… but it is home, it is full of seasons, it is beautiful, it is full of awesome family, friends and amazing best.people.ever.  74.  This is my little sister… so different than me and so similar.  She is adorable and carrying my next niece or nephew…. she and Damon have known the babies gender and name for over a month and still keep it a secret- until they send balloon’s up to Madeline to tell the world what it will be.  She is darn cute and funny, even though she waddles :).  63.  Sunsets are the.very.best on our side of the lake and river.  Last nights sunset was amazing… orange and   pink and purple and lasted a long time.  Beat that you pompous windbag (that’s from Cinderella… I promise I am not calling you all wind bags, it is just what my mind thinks when I say “beat that”).  Actually that saying that right now brought me back to my grandmother’s living room with all those velvety couches watching Disney movies on the big boxy TV… Sword in the Stone, Cinderella, The Fox and the Hound… good memories.82.  Lucy’isms… That kid is funny.  Sitting on the boat staring at her hands for a while she says “You know if we had one more finger on each hand we would have… 12 fingers”.  Random.  Funny.  Smart.  Pecular.  A few weeks ago Lucy picked her nose and Amelia freaked out- “Lucy that is so gross, your going to touch the snack and you just picked your nose”… Lucy- “Meme I will not touch the food, I pick my nose with my other hand”. I love her.   (for the record I love her equally to the other Musto Chicks… in case Amelia grows up to read this…)

Wandering around with my family- my dad says 6 fingers would make you miss the middle one when you grow up… there are times that the middle finger can say a lot… so we came up with a new one, a two finger ‘say alot’ gesture to compensate for the extra finger and lack of a true middle finger.  So next time you are mad and want to think about what it would be like to have an extra finger on each hand… ring finger + middle finger = the six finger “say a lot” gesture…


1.  There is a lot missing in this picture, but this is our now.  This is my current normal, my little family.  I would not change them for anything (even if I want to drop Amelia off on the side of a road when she is throwing a temper tantrum in the back seat)… these are my everything, everything that I have to care for now.  Madeline is good… she is beyond my responsibility, it is her legacy I am responsible for.  Amelia and Lucy need me… and I need them.  1