Frozen…

Sisters.

There is so much I love about this movie… I love that the romance is a back story, almost unimportant to the messages.  I love the relationship between the girls Elsa and Anna… It is hard, lonely and strained through the middle, but there is love.  There is much symbolism in her learning to control the ice and freezing.  Her fear and discomfort produce jagged and sharp ice formations.  When Elsa was young she didn’t fear her abilities, she used them for joy.  There was an accident and that made her fear everything.  She was guided and almost forced to be lonely and scared of her talent.  The amazing snow day in their ballroom was soft and beautiful and fun… then the tragedy changed it.  That moment created a need for controlling and suppressing and putting away feelings, fears and talents… goals and living.  It is sad.  Anna doesn’t understand the lack of love and sadness and loneliness… the walls that were created to ‘keep her safe’.  Those walls were the reason for the crazy, cold and stormy story when Elsa became Queen of Arondale.

Elsa has to find her independence and see what her power is… to ‘Let it go’ and be herself.  When she lets down fear and anxiety she can control her power and create amazing, glorious and perfect structures – suppressing or putting away her feelings create storms and torment for those she is in charge of.  When she is finally faced with the ‘loss’ of her sister and the pain of that loss she is so sad… so empty.  She lets it go and the storm stops… she lets her feelings, her heavy and her loss show and the skies clear and the winds stop… the torment is gone.  Anna saves her, sacrifices herself for her sister and saves Elsa’s life.  In that moment, the moment of an act of true love (love defined in the movie as “putting someone else’s needs in front of your own”)… Anna stands in the way of what would have killed Elsa, over her moment to be saved by her love.  It is a moment that turns happy, when Anna’s heart becomes unfrozen… but for a few moments we are faced with this loss of a kind, amazing, compassionate and loving sister.  The end is amazing.  I love that she finds that saving everyone only requires love, that her power is a gift not a curse… that love is the way to change the cold and relentless winter.

Love is better than fear, anxiety, suppressing feelings and putting away talents, gifts, memories, relationships and confidence.  Using love to let it go, show it off and ‘control’ it will help it shine and be a positive thing.  Treating those things with fear, anger, hiding or anxiety will turn those gifts into curses and burdens to carry.  Imagine if the load were carried with love…

I love this movies for so many reasons.  I love the sister relationship, the struggle and the love.  I love the characters and their roles.  Every one had an important piece in telling this bold and powerful story.  I love the love… I love the talent and how much of a gift that talent was to the whole kingdom when it was used for joy.  Snowflakes and snowmen and ice skating in summer… happy people condensed in a town square… perfect ending.

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The Trainwreck.

this week.It was a good week and a bad week.  The good was condensed into the beginning of the week, and the bad took up the middle and end.  TGIF… I think.  Seriously, can Saturday suck too?

This week we had an amazing ‘best day ever’… the next day I was tired and had a meeting that didn’t go in the direction that I wanted.  I spent that afternoon on my couch feeling like junk… like I have said when I miss Maddie or get sad I am sick.  I was due for a ‘sick day’… only that night turned into a train wreck.  One that I am still mad, annoyed, angry, sad, disturbed, let down, tired and have a freaking tension headache that won’t go away.  There are some things and some energies that I am learning that I can not be around… Some people bring me too much confusion and sadness and anger.  On this particular night a person I am very close to, apparently in relationship, not in respect or love or kindness or understanding… this person I have had a few misunderstandings that didn’t need to happen and opened wounds that still won’t close.  She assumed and accused me of many things, hurtful and angry things.  After a long argument, heated words and leaving to calm down… I talked to my clarity, my orange lady, my Laurel.  She brought me back to my lane, my safe and a better understanding of my needs, roles and not-needs.  I ended that night knowing that I have to let go of this person, this energy.  I have to keep myself in my lane, myself safe and my girls around safe, comfortable and kind relationships.  I have to keep my fragile and crazy brave girls alive, healthy and growing up in more loving, calm relationships.  So I am kind of currently a mess… but I know me, I know life, I know God… there will be a way to go soon, or a peace that I feel and know.  I know it.  So for now… I will trust my thoughts and current knowledge and make the best choice I have for right now.

The other hard part about this week is that when it gets hard, I can see the boundaries Matthew and I have made and enforced.  When I have a very painful and hard moment, there is no comforting and loving hug.  When I am standing and shaking and close to falling, it doesn’t physically feel like I have him there to support me.  I know he is there for me, but not in the way I feel that I need.  The boundaries are a need, for me to learn to be me and not “Matt and Erin”… I know that those established boundaries and separations will help me move to a safer me sooner… but I friggin’ miss Matt sometimes, and need him.  I don’t want a hug from someone else, I want to feel human skin and know I have a teammate… but I don’t.  I have a co-parent… a me and a matt… that is hard.  I have said before that this is easier for him, he must think I am nuts that I am not farther and I am focused on this loss… but marriage made us one.  Our version of ‘one’ wasn’t what I wish I had help make, nurture and be a part of… and I wish we could find that version.  In this train wreck I feel surrounded and lonely, sad and confused… glad it is Friday.

So today I started clean up work… I began picking up my wreckage… my confidence in parenting, my knowledge in grief, myself, my friendships and bonds, my past, my memories and that incident… I am going to put back what needs to be put back and sort through the junk and purge.  I need positive and kind people- to support me.  I need people who honor my needs and my families needs.  I need people who share my goals and the healthiest way for my family to move, live and breathe in this mess… I need people to honor me, my Matthew, my lovelies and our future.  We are not normal people… and we need extraordinary people to step up and walk with us.  I am blessed to have so many extraordinary people in our life… focus on those that keep me in my lane, my family moving and alive and support us.  That is the lesson in this week’s train wreck.  Lesson learned.

Amazed. Content. Exhausted.

 

Today was… exhausting, refreshing, busy, fun, simple, amazing, full, emotional, intense and happy.  It is amazing to me that we can feel all of those emotions and physical states in just a few hours.   That our body can be exhausted yet still make room for the interesting conversation about God and Jesus and all of the blessings in our day.  That after waking up, meeting a new little baby we did a ‘best day ever’ for, redoing his nursery, doing a news interview, rushing home to drop of helpers and make the bus, grabbing Lucy and heading to the Hope Club for a little dinner/group to meet and be around other families with cancer stories… that after all that one of the best parts of my day came at the end- in the car ride home.  The girls and I got talking about Madeline and how God gave me the very best, most coolest and silly set of kids ever… and then having them tell me that one of my kids is missing.  We talked about how blessed we are everyday and what kinds of things we are thankful for and should thank God for… simple things.  Lucy said flowers and the colors blue and orange.  I mean, really, what would the world be like with no blue or orange?!!?!?  Amelia said family and school… because she loves her family and if there were no school people would never get smart enough to know 2 + 2.  Simple as that.

In all of this day, I am now reflecting.  I thinking of how amazing it is that so many people help me to get to redo nurseries for families.  It blows my mind daily that someone can believe in ‘best days ever’ enough to understand the importance of them and to entrust me to find the families, find the help and give each family their very own, very personal ‘best day ever’, whatever that looks like.  It is such a gift to get a call from the place I ordered catering from, for these families to have a place to come together and meet and mingle and share, that the owner would call me and tell me that dinner if on them.  What a kind gift.  What makes people let me do this?  What a gift to me, to be able to do this.  I am so blessed to have people trust my messy, crazy self… what an honor and blessing to get to do this.  Imagine if your job was getting to grant special wishes, happy moments or simple and easy family time for people… that is my job.  There are many other hard aspects of my job… many other fun experiences that come with my job, but seriously this is a dream job for anyone (even though I don’t get paid), it also helps me to share Madeline, honor her and create experiences that make Amelia and Lucy different.  They see the world differently… they don’t even know that their world is different.  Today Amelia and I talked about Lochlan (our little baby ‘best day ever’ today), and if he would go to heaven.  I told her “Eventually everyone dies and can go to heaven, but Lochlan is healthy right now.  We should pray he stays healthy and that when the time comes he will need new kidneys”.  We then talked about organ donation and how Madeline’s eyes (corneas) are still here on earth, alive.  That someone who couldn’t see, has the gift of Madeline’s eyes because she was in heaven and didn’t need them anymore.  We talked about how Madeline’s heart tissue is still alive, that little babies like Brenna have hearts that work because of families letting them have those gifts.

How many people have these opportunities?  How many people have these moments with their kids?  Maybe you look at these moments as sad and morbid… but I think they speak and teach of life and living and death and heaven.  I think they show how amazing life is.  I think the difficulty of helping a family and hearing a sad story is far outweighed by the peace, happy, calm, surrounded, loving feeling that helping them brings.  Lochlan’s mom gave me a gift at the end of the day.  She told me that she had an experience while working, a patient told her there was a blond girl around her.  That it was definitely a blond little girl… then her husband had a strange dream about a blond little girl playing on the floor in the nursery with Lochlan and his brother Declan.  That she didn’t talk, but she was there playing.  It was like Madeline was with them.  I really believe she is.  I know she brings the people I need and brings me the people that need me… in this she gets a gift.  She gets to connect to children and be with them, to help them even though she isn’t here.  Madeline is a truly awesome and perfect gift.  She was 1/3 of the best gifts God has ever given me.  I would take her gift of 5 1/2 years over any other gift God would have given to replace her- I can handle losing her.  I can handle losing her because she is so often right here… in a ‘best day ever’, in a moment of Lucy making a face, in Amelia as she sits and looks at the TV, in Matthew when he tells me “be safe”… she is right here with me when I pay attention.

Thank you darling for the little gift today.  I love you.  I miss you.  I am glad you are taking care of us… ❤

The Other Side.

When I met Laurel, Myles mom, it was at a Barbeque for Circle of Champs at our YMCA.  I remember being overwhelmed at that party, it was only a few months after we lost Madeline, and I didn’t know what Circle of Champs was and how we would fit in.  I met Laurel and her son Myles as they were dancing and talking to others.  Myles had DIPG and was a bright happy boy all dressed in orange.  Laurel was a force, an energy, a bold spirit and I instantly knew I loved her.  I remember hugging her and telling her I was there for her.  I told her Maddie’s Mark could set up a ‘best day ever’ for Myles and help them in that way.  She hugged me and said “I’ll need you on the other side”.  Soon after that event we set up a kids reptile party for Myles and his neighborhood friends.  He enjoyed this day and his gifts and it was great to meet Laurel and her crew.  They made it easy to fit in.  She was a lot like me, she wanted her son to ‘live’ and enjoy and share and smile and be himself- for as long as he could be Myles.  She filled his days with fun adventures, normal playtime and visits, his dream vacations and all the best stuff.  Myles had a great life, every part of it, even when it was hard.

The other side.

The ‘other side’ came not long after Myles ‘best day ever’ from Maddie’s Mark.  He passed away peacefully on his own time… it was another perfect and sad and peaceful and painful passing.  The other side came right then… I worked as hard as I could to help Laurel and her crew create Myle’s orange celebration of life.  She wanted bright, happy, full of remembering, full of Myle’s spirit.  It was perfect.  I tried to help her with all of her needs and goals for that day… from ideas, glass candy bar containers, donations and food.  It was perfect and orange and blessed and happy.  That was the start of the ‘other side’.  Since that time the ‘other side’ has kept me and Laurel alive.  This bond we have, these similar values, the things we have learned and shared… the life that we get.  She is often the most logical and experienced person, she stands back and sees things from a little different perspective.  She helps me do the same.  She needs to vent and I listen.  She needs to calm down or my thoughts on a situation and I am there.  She is so brave and real and genuine.  There is no fake in her.  I love it.  In the problems and changes this life has handed me, she has stood by and let me cry, yell and wonder… and then will tell me to ‘stay in my own lane’ and let other people, including Matt, to sort out their stuff.  I need that reminder often- to stay in my car with my stuff and in my lane… I can only work on me.  I love when we get together… it is a freeing and easy time for me.  I love seeing Marcelle and how he quietly loves my girls.  I love that Laurel brings such sparkle and shine to my girls… they love her.  I think that Myles and Maddie worked this out for us… I really do.  I think they helped us find each other and that they knew we would need each other on the ‘other side’.  I can’t imagine the ‘other side’ without Laurel.

How is the ‘other side’ different?

I can’t find many similarities today… it is so different.  My car has only 2 car seats and I have yet to be the tooth fairy or really shop at Justice.  I hang out with a lot of people who have children who are gone, and I am not scared to meet them.  I know lots more than I did about Childhood Cancer.  I love to write about grief and death and missing… those topics I really relate to.  I have a much stronger faith.  My girls hang out with sick kids, families who lost children and know more about hard than most.  I miss Madeline all the time.  I am coming to terms with the fact that I am going to be divorced… that there will be no Matt and Erin, and no more growing up with each other in the way I thought we would.  I have lost a lot of people from my house… 2/5 in less than two years.  I have lots of crazy that wasn’t there before… thank goodness for the ones who help me sort it.  The ‘other side’ is never normal feeling… a bit of happy or real will dissipate and be gone quickly, followed by the crazy and confusing ‘where is my home, where is my normal feeling?’.  The ‘other side’ is somewhere I never thought I would be.  I am glad that this ‘other side’ has so many blessings, kind people, memories and carriers.  I am thankful for my crazy partner on this ‘other side.

 

 

 

Fight for Ryder.

Ryder Snow, get the best.snow.day.ever.

I don’t normally post our Maddie’s Mark Foundation ‘best days ever’… I just feel like this is separate.  I have to post this one…

Ryder is a 4 year old boy from Florida and was diagnosed with DIPG and wanted to play in the snow… with his family and father.  So with lots of best.people.ever Willard Mountain, Hilton Garden Inn, a limo company and Maddie’s Mark (as well as lots of friendly donors) Ryder got his wish.  I was lucky enough to get to see it and watch his amazing family enjoy their day.  It felt like I was watching their family enjoy a special day like ours did in Lake Placid, with Madeline.  It was awesome.  I brought along my amazing Photographer friend, Dania- Kidography by Dania, and she caught some amazing moments for Ryder and his dad Michael to have.  I am soooooo thrilled with the captured moments that are there for forever, that I really want to share and show off the kind of work we all do, and what we are trying to do when we create a ‘best day ever’.  So here it is… click away and share.  She is lovely, talented and amazing…

Kidographey by Dania- Fight for Ryder

 

Saratoga Mama Honor…

I don’t often see myself as inspirational, it makes me blush and feel like they mean someone else.  I am honored when people tell me that, but it is… surreal to think of myself as an inspiration.  Living in this feels like… I am just living.  I am just surviving.

I am honored to have been picked up as Saratoga Mama‘s January 2014 Inspirational Mom.  It is a blessing and a strange feeling… but I shall say “Thank you” and kindly accept.  She shared and featured our story today and will be publishing a special piece in her magazine in March.  Seriously, thankful.

Check her out, share and enjoy… thank you.

http://www.saratogamama.com/inspirational-mom-january-2014-erin-musto/

Being a child and Living with loss…

I love having the opportunity to share Madeline, her life, our journey and all that I have learned thus far… Thank you A Nation of Moms for helping me share Madeline, our journey and lessons on living and grieving.  I am blessed to write and share… it is a big part of this journey and staying healthy.  Please visit the link, leave some love and share away… <3.

 

Being a Child and Living with loss…