“Stars”

I heard this song last night and think it might be the most perfect song for the feelings and thoughts I carry… it is lovely, soft and very real.

 

Grace Potter and Nocturnals – Stars

 

It’s amazing.  It’s perfect.

“… and if I know you at all I know you’ve flown too far… so I, I can’t look at the stars”

 

I love you lovely.

Advertisements

A Big Honor…

Last night our local Relay for Life dedicated the Luminary Ceremony to Madeline.  It was lovely, calm, beautiful, moving and perfect.  So many people in a dark field lit only with luminaries… lit only with the ones who have survived cancer, are still fighting cancer and the ones we have lost to cancer.  It was such a memorable experience, I will never forget.  The people, the music and the atmosphere were so… I don’t know… comforting and they surrounded us.

It was an amazing opportunity to share Madeline with so many people… to show them her light and kind energy.  She will now live in the hearts of so many more people, and hopefully impact their tomorrows.  I hope they think of Madeline and take more time for their family and enjoy ‘best days ever’ and just live more.  I hope they support all the different ways to change cancer and diseases and people in need… I think they will.  They were that kind of person… they were a big pile of the good ones.  I hope they walked and walked last night and know that they can change things…

I was asked to speak and share Madeline and our life and mission… this is the speech (though I messed it up some but I think everyone knows her better)…

Cancer.  Cancer changes lives.  It changed, forever, the course of my life and it has changed all of yours in some way.

Good evening everyone, thank you for this opportunity to share, remember and celebrate many lives altered by cancers.  I am Erin Musto, Madeline, Amelia and Lucy’s mom, and Matthew’s wife.  I am changed.  We are changed.  Our future- completely not how I planned when I started this journey of marriage and parenthood…

In February 2012 my daughter Madeline was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brainstem tumor… that would take her life 5 days later.  Her battle with cancer was very short.  She only ‘kind of’ got to know her cancer… her cancer quickly took her lovely, functioning and living cells and ended her life in a very short time.

Madeline was by nature a very kind compassionate, silly, simple and mature 5 ½ year old… with 70 more happy years to fill. Cancer took 70 or more of her years.  It did not take her soul, her spirit, her simple happy- or even her dimple and her smile.  It stole her future.

Our family has worked hard to find a way to share Madeline, and in a way give her back some of those years.  Though her living journey is done, her journey is not.  We started Maddie’s Mark Foundation to help families going through worst case scenario- living with a sick child, experience Best Days Ever… to help them enjoy their time and live when they are working through the hard.  Madeline lived in a joyful and simple way, she reminded us all of the importance of fun, unplanned and easy times after a little Musto family dinner- announcing to Matt and I “BEST DAY EVER”.  We also work hard to create spaces and environment for families on a regular basis to enjoy ‘best days ever’… playgrounds, nature walks and simple, safe and fun places that Madeline and her sisters loved.

We are all here tonight to change cancer.  To create awareness, raise funds, support those who are fighting, celebrate those who won and remember those who cancer took from us.  We are here to seek change- we are all different than we were before cancer touched us- most likely we are better stronger people… those are all God and the human spirit… those are not cancer.

Tonight we are here to remind the world to change.  To show that that those children and people deserve those valuable years lost.  We are working hard tonight for all cancers.  Remember to go out and support all of the cancer changers- help support fundraisers, share stories, give blood… do what you can.

In my heart I know that Pediatric Cancer needs more support- so please join us in going GOLD in September.  Share Maddie on your journey and honor her by living your life full of ‘best days ever’.

Please feel free to come see our table, check out what Maddie’s Mark has done and can do… share your story and come see my lovely, I love to show her off… also drink lots of water and walk, walk, walk.  I am so blessed and proud to be here tonight.

Thank you all…

Far Away

Lately I sit down to write and I have nothing… I feel pretty far away.  I think I am just trying to get through all of this stuff and not really taking the time to process it.  I will take the time… but if I stop to do it now I will be lost to the fact that Madeline should be moving up to 2nd grade this week… I should have gone to my first ever field days with her… and tie dyed tee shirts and watched her run and play.  I would get to see all that and Miss Amelia graduate Kindergarten with her big dimple and excited for summer face… and watch Lucy graduate from 3yr old preschool… but alas I have put some things away to take back out when I can handle them and reflect on them and cry or laugh about them.  I am just not there yet.  In a way I am just far away from life right now… it is the ending of an era, in a way.  My very last Musto Chick is starting to complete the milestones that are such a big deal in growing and getting ready for school.  My very last Musto Chick will quickly complete all the life that Madeline did… Amelia has already hit the milestones… February 9th, beyond 5 1/2 and pretty soon Kindergarten Graduation.  Crazy how this world works.

So… I guess I will take feeling far away for now… as always wish me luck and send up some special thoughts and prayers.

I feel kind of good…

So I had been thinking of appropriate and interesting blog posts for lately and honestly was going to write about numb and sad… that is kind of where my heart was last week.  Today though I feel good… I feel excited for a dinner event tonight, I feel like I got to see and enjoy my lovelies some today, I got a great and hard workout done… I worked very hard yesterday to clean my yard and set up something for Maddie and the girls… I feel kind of good.

So very quickly I am writing to share that I feel kind of good.  In this pile of hard, heavy, confusing, sad, terrible and full of loss… know that right now I feel good.

❤ lovely.

Today will be a good day.

everyday might not be good butSome days it’s a fight to just stay alive… some days it is fun… Today will be a good day…

5 good things I know today will bring:

– Sun and Shade… Warm and breeze

– A good workout with some amazing, positive, and motivating people

– A walk to pick Amelia up from school

– A clean, mowed, weeded, mulched, decorated and green backyard and front yard

– A dinner with my Foundation Board…

Today will be a good day.

A Death, A broken washing machine and a little tornado.

I am sitting here thinking… honestly I can not think of anything to write.  (this should obviously be written in history since it is rare for me to not talk or write or contribute some sort of thought or opinion).

Why can’t my brain think to write?  I think it is darn tired.  I think this brain has had too much too much to think out, too much to get through and too much to stay awake for.  I think this brain is ready for a nap.  I will of course rest my brain in a little while.

For now I want to reflect on a crazy and difficult week.  It was a minute by minute kind of week, literally minute not day.  I made it through every half hour and I am still alive… I guess that is a win right?  I don’t often feel that my life is one full of wins… it is just me getting by in the way I need to, you know?  I don’t feel strong, I hate it when people tell me I am… it makes me feel like a failure.  I think they think I live at least week by week or something… not day by day or minute by minute.  I hate it.  I get my girls up on time almost everyday- most of the time the rest of the day is just a set of motions and movements filled with some happy, sad, silly, energized, tired and all the other stuff.  Seriously I am getting off topic…

Reflect.

Last week started crappy.  After many days of rain and prison, we had a lovely day… and a BBQ.  My brain let me forget that this BBQ was, actually Jack’s Birthday.  It was a perfect, simple and fun celebration of Jack starting his 7th year.  It was full of vibrant first graders and happy people… and I drank wayyyy too much wine, sat in the sun and watched.  I felt loss and a sadness and a missing and a bit of jealousy.  I guess I am human.  I never wish anyone else not to grow, but man it freaking hurts to see them grow.  Jack was going to be Madeline’s prom date and best friend… ugh.  ‘Too much wine Erin’ said something about not having a 7-year-old to celebrate.  Man she is stupid.  I felt so bad on Tuesday…

Then, on Tuesday, I found out one of my best friends dad died, very suddenly, on Monday night.  He was 52.  He was a really awesome man.  He was fun, kind, happy, real… he cared about, was proud of and took amazing care of his daughters and wife.  He was a really special man.  It hit my heart hard… I know Jenn’s pain, her hurt, her journey… it is different from mine, but in ways parts will feel the same.  So the week had many events for Todd and his girls… I think it was exactly how he would have wanted it… and I think his girls will follow his example and take care of each other.

Then our washing machine broke with a WHOLE LOAD OF TOWELS!!!  Ugh.  (good news this Monday will bring a new washing machine and that problem is fixed :))

Wednesday brought a series of random and very rare tornadoes to our neighborhood.  That night not only was my yard ruined and messed up… but I realized that I currently might be losing some of my numb with Madeline’s death but have gained a big pile of fearlessness.  I honestly didn’t care if I died that night.  I knew Matthew had the girls and Sparky safe in his parent’s basement… I would have sat and drank wine while a twister took me out.  From that I realized a couple of things…

  1. I must do the things on my ‘life adventure list’ that are dangerous soon, before I might be too scared later
  2. I am in a place where life isn’t scary and I rarely feel anyone’s anything… and I rarely feel my own self in some ways
  3. This must be a stage or level or something in grief…
  4. I AM NOT SUICIDAL… just unafraid.

So… some reflections… some aren’t sharable right now.  I ask you to throw in some extra prayers that God sends me the right way… and lines up the plan so I know which way to go.

What a week it was… Tomorrow I will wake up and clean up and work on lots… I will do what I can to pull together some of the pieces of this week and we will prepare for a different kind of busy week.  For now I will watch Downton Abbey and decompress :)…

 

❤ you darling lovely.