Music can evoke feelings- all of them.  Songs can help us relate or heal… like a wedding song describing a couple or a break up song helping you feel through the emotions.  Sometimes it is the only way we can really put words to our feelings… by hearing someone else’s words.  It is the same with quotes for me… they can help me organize the feeling or thought and know what it is that I a thinking or feeling.  This is getting more confusing than I mean it to… because I obviously had a reason to write this… okay- back to it.

A while back, when I was still fighting and trying to connect with Matthew, trying to save our ‘us’ this song, Phillip Phillips ‘Home’ was a good descriptor for me. It helped me see what I was working for… that I would work to provide a home for Matthew.  That I would wait for him.  That I was work for him… and I was his home.  That we were his ‘home’.  For all of the work, for all of the time… that is not at all how this worked out.  So that song got stuffed in a spot in the back of my brain with my wedding song, romance songs and wedding crap (I am getting for tolerant of those songs…).  I much preferred things more Carrie Underwood and Sara Evans… songs to help me with angry and assure me that others have made it through this too.

Back to Phillip Phillips ‘Home’…

Driving along in my automobile… my chicken’s behind me not near the wheels.  Lucy is playing with our Kindle and listening to music with her new earphones.  They both start fighting over it so I tell them they have to pick a song and I will put it on the car speakers.  Lucy picks this song because she ‘loves it’.  That day, in the car, with the girls I heard it all differently.  It felt like we were home… “Hold on to me as we go along, as we roll down this unfamiliar road… although this wave is stringing us along- Just know you’re not alone…  ‘Cause I’m gonna make this place your home”.  Those chickens are my home… I am their home.  I will always provide them a safe place to land and love and be.  I will always be there for them… I will always be their home.  I told them as the song was playing that this song is a really special and that I like the way it describes home… and that I think it’s a good song for us.

Matthew always used to say “hindsight is 20/20”.  ‘Tis true… perspective changes with time.  I see things differently… I feel things differently.  It is strange how strong one can feel something and then not anymore… to use the same words or song to define something different.  Maybe I saw ‘home’ as different back then, maybe I imagined Matthew wanting to be a part of our ‘home’… maybe my home has always been my girls.  Who knows, I guess even with time I haven’t gotten the clearest hindsight… but I am better than before.  I love my ‘home’.



So this is Christmas, my dear.

So Happy Christmas… today is the day.  It will be special and different… an adventure.  I am glad my parents came to help in this adventure… not only to help wrap and put together the dollhouse, but because I am glad to have them here for this different.  Different is the new normal.  Weird huh?  How changing things is more normal than a regular and scheduled time.  Change is inevitable, we all know this… but really change is in everything and everyday.  I guess God wants us to get more flexible.

This amazing video makes me… cry some and smile.  It makes my skin prickle and my heart feel heavy… then light just a millisecond after.  The song itself is powerful… but the singer is who strikes me emotions and my ears.  She is a teenager.  She is a singer.  She is a student.  She is a sister.  She is a daughter.  All of these things are her… and she is lovely and talented.  She is also sick.  She is an amazing girl with a bucket list (ps her bucket list tells her personality).  You can not see her sick, you can not see her hard journey or choices she has had to be a part of recently.  You can not see the hurting or her struggles.  You see Ana.  You see Ana’s gift.  I love that most…

This song has always been a thought provoker… it sounds so calm and smooth- then the words bring some of the hard parts of life in.  It also brings wishes for ALL to enjoy and make it a Happy Christmas and New Year.  It’s a different song for Christmas… not peppy and positive, but honest and calm and real.  It isn’t religious.  It is profound in the hope of a lighter and happier year.  A year that lacks war and fear- a good year for all.  In a way it speaks in a perspective that we ALL enjoy what we have the best we can and love it… if that makes sense.  There is always war (in the world and in our lives) there is always fear… but the hope is that we all find a happy year and Christmas in that turmoil.  I, obviously, know that a war was just over as well, in the time it was written.  This song is more about overall though… at least in my brain and heart.  So this song, sung by the lovely Ana, means a lot.

So… for me this song is a little gift, a little light.  It is a reminder of the light and spirit and looking for the love and peace… the connections and threads.  I am so comfortable getting to know Ana’s mom, she is amazing.  This connection to her has brought another mom that has seen big hard things…. that still sees the light.  She is real and candid and she has shared and written things that have really helped me. I am glad for the connection… thankful.  I have never met this family, but the thread is there.

‘So this is Christmas, what have you done?  Another year older, a new one just begun… A very Merry Christmas and a Happy New Year.
Let’s hope it’s a good one… Without any fear… ‘

So as we all celebrate and enjoy our today… I wish you a Happy Christmas.  I wish you a lovely New Year.  I wish you the hope and the perspective to see the light and love and real… to really be happy.  I hope you let yourself connect to those people when a thread is connected.  I hope you can see each of us for what we are… not for what we are doing, fighting, seeing, thinking, struggling with… but for what we are.  I hope you can smile and laugh even in the hard times.  I hope you pray and open up… and get naked sometimes (not naked naked… but vulnerable)… only when we share our vulnerability can we connect beyond surface.  Let others light in, celebrate their good life and success.  Let go of some of the ‘wars’ in your life… So this is Christmas- the war is over.  Let it go.  Let the light in.

Merry Christmas darling.  Thank you for the connections and support and love… I freakin’ love you, every bit of you.  I flippin’ miss you- your good, your bad.  You are with Jesus for Christmas… which I know is a good place to be.  Someday…. my darling I will be there with you, til then keep guiding and connecting.  Keep showing lights… goodnight boogerbutt.

Happy Birthday Jesus.  Thank you.  Always thank you…

Christmas with Madeline.

xmas1 xmas2   Christmas with Mads will never feel the same as it once did… but I will tell you then her tree, her people, her spot and some terribly sung Christmas carols were a darn good way to bring her along into this week.  It is my favorite to see her friends and my girls gather around her tree and bring her ornaments up.  It is simple and festive and happy… underneath those littles know this loss but they are there.  It takes a strong brave child to visit their friend at a cemetery and though it may not look like it in the moments up there, it takes an awesome parent and friend to come up and share those moments with me and for me.  Everyone leaves there with their holiday plans and memories to make… and I know their cost in this.  it costs your heart energy and hurt to go there and see what we are missing.  There is a significant cost… but those amazing people continue to pay that cost to share her, to remember her, to support us… I am so very thankful.  I love talking and seeing and singing and hugging and seeing the kids growth… even at the high cost to my heart, mind and soul.

Some friends couldn’t make it, much of my family is far away… but I now they are here.  They honor her, share her, bring her along on adventures, talk about her and love our family.  I know that they are here… along for this crazy, messy, emotionally expensive ride that is our life.  I love seeing those family and friends taking lots of pictures of their kids, taking them on crazy and spontaneous adventures and make their own ‘best days ever’… that is what this is all about.

Christmas is different but it is not bad… there is joy and happy and busy and funny and real.  There is celebration and connections and light… this holiday season is about the light and birth of Jesus.  In the thick of it that light is what got us through… that light, sometimes, was the only light.  Then those connections and threads that I know God made for us brought more light, an a little more light… to the place we are now- a hard place with much light.  Even on a painful and thick and heavy day… there is light, even when I chose not follow it or see it for a day.  This season is about celebrating this light… the birth of this light.  So… is it dark to know this loss?  It is.  She brings light though… she brings support, she sends hugs, she in those connections and threads and supporters and mountain movers and builders… she is with Him.

So Merry Christmas Madeline.  I miss Christmas with you here… here to hug and touch and see and nibble… but you are here, I just cant nibble you or touch your hair.  You are here.  You are loved.  You are remembered.  You are honored.  You bring light to so many who carry and live in dark… Love you butthead- to the moon and back- to infinity and beyond… Merry Christmas darling.

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A Superhero… who traded his cape for wings…

Today we remember and honor Devon… like everyday for many. Send your mom and sisters a hug bud…

climbing up the polka dot tree


Yesterday… what a pile of emotions… so hard to find correct words and to define feelings…

Yesterday, a family we have met on our journey, said goodbye to their amazing Superhero and Maddie welcomed a new friend… a friend who had a very different DIPG experience, a friend who was older when he was diagnosed and when he took off for heaven… but I know she was glad to see him, glad our families met and her foundation got to help his family.

I feel such a sadness for his family, for just like us, we regular humans don’t posess Superhero powers or strength- nor are we blessed with all the peace and grace of an angel… our angels are okay, but we are broken.  We will have an empty to carry forever, we will have a pain that’s unbearable, we will stand and move with a numbness that is not…

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The gift that makes me late…

An electric blanket… the gift that makes me look bad.

I was late again… the past week I have been late anytime I lay down in my bed.  Last week I crashed and almost missed the bus… and every.single.day we have school we are late.  I blame it on the electric blanket.  That thing makes it impossible to leave my bed… seriously.  It is freakin’ amazing and the devil all in one.

When I was home for Thanksgiving I was joking about how I wish I could hire someone to warm my bed up, my room is freezing and unheated (old, true cape cod).   Needless to say it is really hard to open up the cold sheets and climb in… but I must.  Last week a package came from target- an electric blanket.  BAM.  I even knew who got it.  The girls insisted they sleep with me that night and we had our first bout of being late and missing the bus because we all slept so warm and cozy until 8:30… I texted my sister-in-law thank you but I think the gift would have been kinder if it included a really loud alarm clock and a butler to bring me my coffee  (or a wife… if I had a wife I could count on her for coffee and alarm clocks… and dishes and good fashion advice… crap maybe I just need a wife????)  Anyway back to story… we have been lazy and late since that blanket came to live here.  Maybe it was my forced slow down… maybe it is a blessing in disguise.  I know that I will never, well until summer, sleep without it.  I have decided that even if it is an evil blanket it is staying right there until the sun comes back out and there is no more COLD and BITTER nights.

You know what was the best?  The thought that my sister-in-law and brother just sent it… and wanted me to know that they send love and think of us lots.  I love that.  I love when people just send thoughtful gifts and just let me know they are supporting and carrying still.  I feel like there are lil elves… a family friend sent an amazon gift card to get the girls something special… <3.  Its special to know my girls are loved… Thank you elves.

The missing.

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Once upon a time, in a land that seems so far away… there were a pile of Musto’s that all lived under the same roof, celebrated holidays and birthdays together and ate dinner in our dining room.  Wow does it look different now.  The pile has gotten much smaller only 3 out of 5 of us live under this roof… 2 of those 3 head out to another roof to be a split up separate family there.  Those moments are ever more visible and tangible in the holidays… memories and traditions bring back vivid pictures and thoughts and hurting… alongside smiles and warmth.  It is very clear that something is missing this holiday season… something big.

Last year there was hope for ‘we’ in our marriage, so Christmas was full and still looked mildly similar to other years.  This year I have no hope for a marriage, but excitement for some new normal.  It feels good not to be in a limbo… maybe even a game, I don’t know.  It feels fresh to just start over this year.  I am trying to do what feels good for me and the girls and make sure we bring bits of old in, with our new family-under-our-roof.  I am trying to be supportive and positive about the new in their family-under-the-other-roof.  I want them to find a new normal with Matthew.  Nothing looks the same… but for the first time since Madeline is gone and Matthew has moved on I am excited and ready and taking in all of this.  We set out to get our tree… a tradition that I melded to work into our smaller clan.  Traditionally we have a photo of Matthew walking with the tree and first year Madeline, then Madeline and Amelia… then Lucy.  It was a big tradition, I always felt so proud to share.  I am proud this year… though it stings a bit.

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This year there will be no cards, I am still not there yet.  There is no grand holiday letter to share and photos that I am ready to be put up on your cabinets.  I did make a big jump, I feel, in the taking pictures department.  I actually signed up to have my girls pictures taken.  I have not had the girls pictures taken since Madeline was alive, professionally.  I didn’t want to.  I couldn’t figure out how to pull Madeline into them, and not feel like she was missing.  She is missing.  Amelia and Lucy are still growing.  Amelia and Lucy need to have their growth and changes documented.  Someday I will want to look back and see those things that are different from then to now… those things that have changed.  For now… it feels like a big freakin’ hole of missing.  Sometimes it feels just fine, but for some reason pictures of the girls feel like they are missing something- an awkward and smiling 8 year old.  I feel like I made a big jump even though it was scary.  So one night I jumped on a spontaneous mini session with my lovely Kidography.  She was funny and easy… and assured the girls that she could edit out the big knee of mud that Lucy managed to get… I loved the pictures.  I love the JOY… I felt like that was a bright addition to photos missing someone.  How did I pull Madeline into this one… I couldn’t find a good thought for an outfit.  I didn’t want to go all Christmas with PJ’s and traditional holiday.  I didn’t want fancy, fancy dresses.  I wanted simple and ‘Musto’.  I remembered a set of Land’s End fair isle sweaters that I ordered for Madeline and Amelia.  I meant for them to wear them for holiday things the year before Madeline passed.  Madeline was a pain in the butt about clothes.  I feared her throwing a fit about the sweater being itchy or something so… I bought a set of dresses and went that route.  I still have these sweaters  in the girls closet.  I couldn’t seem to put them away.  I had hopes that Amelia and Lucy would wear them.  I had forgotten about those two sweaters… until then.  Though they were a little too small we compromised and got under clothes to show off the sweaters as shirts… not tunics :).  So in a way a bit of Madeline, Madeline’s sweater,  was in those pictures… and they came out awesome.  I am thankful for this help in documenting life right now.  As hard as it is to see the missing… it is important to bring this into the future too.

Even in the missing, there is joy and warmth and love and people and life and adventures.  Even in the dark we find light… in the missing we keep moving and growing.

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