Adventures far from home, with some bits of home.

For any who know me, they know that I am a spontaneous traveler.  I joke about having ‘commitment issues’, but honestly I have them.  I think it may be more of a ‘fear of what tomorrow will bring’ problem.  I am sure many who have lost children have this, imagine in one day, or maybe five, your entire future of plans and ideas is gone.  You are left here to build a new future and plan new plans and create new ideas…. Or you can be me and pack lightly, jump in the car and head off to find some fun adventure.  I know sometimes there are many more trips to Target for things forgotten, or plans that don’t go the way I planned.  Honestly, I don’t think I would want to or could do it differently. 

I love adventures, as I always call them.  To most they would be unorganized bouts with chaos, but it is my way.  I tend to drag my girls into it, we are known for packing up, even when there were diaper bags, and meeting people an hour away for a spontaneous dinner.  I think it keeps us young, others would think we were nuts.  This week is my week off and my niece happens to be hanging with us.

I had no time to plan any events or plans for the week, and think the weather would have kicked any plans to the curb.  In my natural way, I decided we play the week by ear… sleep in, do nothing mixed with something.  I wanted to check out things I put off until work was done and also honor Lucy’s demand to sleep in this summer (listen don’t poke a Lucy, she may not bite but she stings).  So we set out on adventures.

We checked out Jumpin’ Jacks, a Waterski Show, pizza night, Indian Ladder hike and then visiting our friends at Indian Ladder Farm.  We have been rockin’ a week of fun and simple.  Today we thought we would head to the aquarium, but I thought about how sunny it would be.  I woke the girls and told them they had an hour… we were going to the zoo.  I had found a cool Groupon for a zoo in Catskill, south of Albany.  I packed a fancy picnic of left over pizza and pb&j sandwiches on leftover hotdog buns… and the girls prepped.  I jumped in the shower and we were off…

I love driving that way, the roads are different than up north.  It is windy and so green, the whole area surrounding Woodstock and Hudson and Catskill is different than here in Albany.  I am sure many say that when they visit back home, on Lake Ontario.  Today we blared the radio, sang the songs and I let my hair blow everywhere.  I didn’t even get pulled over.

We got off the thruway and wove our way through Catskill, a town I had only been in a couple of times.  Google Maps told me to take a right on to 32, and I followed directions.  I saw the most peculiar thing… a piece of home. 

David Lane died while working in Catskill as a NYS Trooper.  He was killed in a car accident.

I never really knew where David passed, or where they continued to honor him, beyond home.  His family shares and celebrates him in the best way.  I immediately looked in my rear view and forward and U-Turned (it was safe I promise).  I went back and just looked, a piece of home left for heaven right here.  Most northerners would never happen upon this sacred spot.  I did.  I saw his face, in his Trooper picture.  I remember others talking about him, some who dated him long ago.  I thought about his unfinished life, his fiancé.  I felt it.  I sat for a few and told the car full of girls about him.   We drove on.

A few moments later I saw his marker on the side of the highway, back a way in a business’s yard, near a wooded area.  I turned around (again) and went back to really look.  It was well maintained and had a NYS Trooper tie and a beanie baby.  I just peeked and went back to the car… I thought about another time…

I was training for my Marathon several summers back and I went out for my long run one day of vacation.  It just so happened that Pillar Point was 21ish miles from my cottage back to my cottage, a nice long loop.  I started very early and it was still dark.  Several miles in I saw a memorial, Brittany’s spot… a place where a lovely left this Earth and headed to Heaven.  I stopped and said a prayer, for that beautiful dimpled girl and her parents who missed her so.  I remember Brittany from when she was little, her mom was a hair dresser and she had this smile that could win awards- flanked with dimples.  I kept running that day, but after crying could never get my breathing back to a good, controlled breathe.  I knew I would fail that long run and I called Matt to come pick me up 17 miles into that 21 miler.  I felt it.

Today’s adventure, I felt like, was an opportunity to bring him along.  I thought about David the whole day, not in a sad and terrible way.  I know what it feels like to have a child in heaven, I felt like I brought David along today.  He was my bit of home in an adventure far from home…

I think he enjoyed the zoo today… I really do.  We did.  We laughed at the ugliness of the turkeys, how did God make them to look that way… we reveled in the beauty of the peacocks and noted their shyness (I am sure in the wind it is a bad thing to be gorgeous and stand out)… we fed the llamas and snuck carrots to the camels.  We chuckled at the pigs and I told the girls not to pick on them… no judgement here.  Lucy growled at the tigers and one came out to see if we would be tasty.  I am sure I looked to hard to catch, I think Amelia looked tasty.

I splurged and let all the girls (Hayle too), ride a horse and enjoy a little extra.  I loved today, and yesterday… and pretty much all adventures.  We headed back to my house and took the long way home.  Part of the adventure is the journey… I am sure Hayle will never forget 8675309… or a the Matthew West song I belted with a nice deep tone.  That is a good day… a spontaneously best day.  A Best Day Ever…

I am grateful to have happened upon another family’s spot for their son, one from back home.  I feel like I got a to bring a bit of him along today.  I hope he enjoyed . 

For tonight we all rest… no one knows what tomorrow will bring here at the Musto Residence.  I see another adventure….

All that she misses…

Life is fast.  One day you are nursing your baby and encouraging them to roll or walk; only a few blinks later they are graduating preschool and starting Kindergarten.  Time is funny, when we live it can feel so freaking slow… but in retrospect it rushes and rolls on by.  Since Madeline died time is hard for me to grasp, I see my lovely as a 5-year-old, but I see her old friends become 11 year old’s.  Time doesn’t make sense in my brain, I don’t know if that will ever change. 

Madeline would have graduated from 5th grade today.  She would have come home all fancy from graduation and been crazy excited to be a Middle Schooler.  I know all the things she would be excited/nervous about- mastering locker opening, a new lunch room and a totally different class schedule.  I would be nervous for all the parts of Middle School that hurt and are hard.  I would be praying she was a good friend and took care of others.  I would be preparing for the hurt that will come with all that High School and Middle School…

The world keeps spinning… and today Madeline’s friends moved onward and upward.  She will forever be only a Bradt Elementary kiddo.  That is her journey…

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Today my Lucy exited Bradt Elementary for the last time as a student there… she graduated to 3rd grade.  I have had a child at Bradt for almost 6 years.  It is our home.  I left with her and felt a sadness for her next year… a bit of sad that she is growing and God just keeps giving her one more day but also that she keeps outgrowing all that Madeline touched.  I can’t believe time has moved this far from her… but alas it always does.

I decided, if Madeline and my girls weren’t at Bradt, then I best just join the family.  I accepted a position at Bradt within their Special Ed department.  I will continue to wander and run in those hallways for the time being.  I know how much she loved that school, with the bright colors and the amazing teaching team.  I hope she runs and wanders with me…

To top our last day of school off Lucy had a Championship game tonight.  We had a great pep talk “Lucy enjoy the game, do your best”… “Okay”… “I love you if you win or lose, but Bubba it will be fun to win tonight”.  So… Team Maddie’s Mark won.  I felt it, like I won.  Imagine watching your daughter do what she loves, on her sister’s field… in purple shirts, on the team her sister’s legacy sponsors.  Lucy doesn’t have to wonder if her sister, Madeline, worked her magic.  Madeline was propped on my shoulder, like Lucy always tells me, watching and cheering.  Today was a Best DAY Ever…

Life moves fast…

It always has and always will. 

I laughed tonight when some pictures from 2010 popped onto my feed, you know that Time Hop gift.  I was working to upload pictures of Lucy and her team… and look what popped into my feed.

Madeline played soccer for a few seasons.  As many other kids ran and chased the ball Madeline somehow always seemed to care about how her socks were bugging her or be chatting with a friend.  I watched her then and knew she was never made to be a sports star, in a way I was right way back then.  God had much bigger plans than putting too much competitiveness or soccer feet on her.  Such a different Musto Chick than her sisters. 

Eleven years ago today I was hanging out at St. Peter’s waiting to meet my Madeline.  Today I started summer vacation with my girls, Amelia will enter 5th grade in the fall… only one more step until Middle School.  For today we enjoy, we celebrate and we wake up late and watch Phineas and Ferb.  I know the drill time will keep moving, just as it always does.  I will blink and be getting semiformal dresses and talking about permits and….

Hopping back in time…

The thing is… I have a love/hate relationship with Facebook flashbacks.  I love them so much, but they hurt so much.  I sat outside in the sun skimming through people status and beyond… and I time hopped.  My shoulders were enjoying the sunlight, my ears were rocking out to Mumford and Son’s Pandora and I was loosely watching my girls play baseball together.  Did you know on this day 7 years ago…

I didn’t.

What a confusing gift going back in time is.  The pride and love and excitement of that moment, way back when.  I can remember what we were wearing and carrying my camera and a Lucy for these events.  So long ago…

Somedays I just skim past those memories, others I check them out and smile… today I saw where I was only 7 years ago and my heart hurt and my eyes let go of some pent up tears.  This is the time of year, the crazy time… field days, concerts, recitals, baseball, travelling, weddings and family parties… it is the best crazy time of year.  We watch our children grow and see them succeed and advance.  It is a good and exhausting time for parents.  I love it.  It hurts.  So is life…

I imagined my life as one with 3 girls, maybe even more.  I only have 2 Musto Chicks to build now… and I am mostly here doing my job and loving what I have.  Mostly. 

7 years ago Madeline was graduating from MOPS and Preschool… I remember those milestones and the  days they happened.  They don’t seem so far away… but look at my life.  Those moments are a million moments from this very spot.  I can still see her smiling as I took her picture, with her folder and her black and white dress.  She was so proud.  I remember Madeline being so excited to grow and get to the next step…. She was, honestly, 15 years beyond her age.  My lovely was an old soul. 

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Tonight that Facebook Time hop poked me in the heart and knocked me back to a mom missing her lovely.  I miss the days of having lots of girls who needed me to guide them and build them… and feed them.  I miss making cool snacks and doing little crafts… the days of toddler’s are gone from here.  I miss her… I miss it all.  I don’t regret the crazy or the tired or the exhausted, I don’t regret wishing some of it away…. But I look back at my three girls snuggled in one bed, my Madeline pretending to drive her sisters on the couch and I can still hear her voice as she sang to her sisters.  I miss 7 years ago today. 

If it could ever happen, I would return to this day back then.  I would go through it all the same, but keep my eyes open and take it in better.  I would memorize it.

A mom I met after Madeline was sick told me this… her daughter had been sick for years and she journeyed with her.  Jenny told me that in the time her Ila was sick she memorized her.  I only wish I had been better at memorizing her.  Jenny has every piece of skin and look of Ila, every smile and her voice are in her brain.

I have a love/hate relationship with Time hop. 

What were you doing 7 years ago today????

Watching Baseball….

What does it feel like to watch me play baseball, mom?

Lucy asked me this the other day before her game.  We were rushing and rushing to get her uniform on and get to baseball on timeish… and I smiled and said I love it. 

I thought more about it as the game and time has gone by.  I love the way that Lucy thinks, she is so different and often she has such profound thoughts and ideas.  She is wise beyond her 8 years.  Lucy’s words and writing usually grounds me, she brings me back to where I should be as a mom, a leader, a teacher and beyond.  What a profound wonder she had, “what does it feel like to watch me play baseball, mom?”

She has heard me for years send her out the field and tell her to have fun, enjoy and be safe.  She has run off the field for years now with a smile, excited for a free popsicle, giving me details of the game.  I see the light in her eyes when I tell her I loved how she hit in the beginning or how she ran fast in the play with so and so.  She is so glad when she knows I saw it, and I miss things as any mom or dad does.  I never really thought to answer a question like she asked.  I wish I had a better answer on that day… but someday I hope she reads this.

“Watching you makes me feel so proud.  I love seeing you cheer on your friends and work hard… my favorite is seeing you when you miss a good pitch and your step to the side to test your swing.  I love that you look so ‘in control’ of the bat in that moment.  I watch and I feel like it is a glimpse of grown Lucy, you look so mature out there.  I love that you do it all.by.yourself… even when you had so many things to do that day you put your purple on and grab your cleats… you get your bag and you tell me to move so you aren’t late.  You hate to be late.  I love to watch you run to meet your team on the field.  Lucy I think it is awesome to see you follow the rules and participate as a team, you encourage the ones who need it and bust out in a big cheer to keep the team moral going.  Lucy, most of all, I want to tell you that seeing you do something you love is one of my most favorite things.  I can’t believe how self-sufficient and happy you are, I don’t remember being like you when I was 8.  Bubba- you know mommy likes to talk a lot… this most- you are one special girl.  I thank God every day that He picked me to help build you, and thank Madeline all the time for all she builds in you.  I am proud, but I know she is so proud.  I know that Madeline is a part of every run you get, every hit you hit and all of the smiles that you enjoy doing your thing.  Thank you Bubba for reminding me to think deeper, and acknowledge bigger.”

Maybe we should all think out more of the ‘how does it make you feel to…’  I am sure we would be more present and content in this crazy journey called life.

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DIPG makes Super Heroes

Once upon a time I lived the world so many do, a world where pediatric cancer is healable and treatable.  Children smiled in pictures with no hair, and what I understood if very few died.  So untrue…

February 3, 2012 I became a cancer mom, beyond that I became a DIPG mom.  I entered the childhood cancer world with the worst case scenario- a diagnosis of an inoperable brainstem tumor with a terminal diagnosis.  We were actually told that Madeline would take her last breathe, smile her last smile and give me her last Eskimo kiss in the next weeks or months.  For us though… she left only 5 days later.

Childhood Cancer is not what I thought it was before February 3, 2012… it is not always treatable or curable.  Children experience extremely painful surgeries and procedures.  They receive chemotherapies that are dosed at adult strength- some haven’t been changed or improved in 30 years.  The treatments they receive, if they are lucky enough to make it to adulthood, will cause so many detrimental issues.  It isn’t just lovely kids getting better, smiling with a bald head.  It is much, much worse…

This weekend we travelled to Baltimore to visit my baby sister, Molly.  I remember seeing a 6k last year for a foundation that supports DIPG research.  I put it in my brain that next year, if we could, we would go and run as fast as a cheetah- only I hurt my ankle and put on weight so there was no cheetah in me.  We made it.  The Michael Mosier Defeat DIPG Foundation hosted a 6k Superhero event.  Last night they also hosted a dinner in Bethesda for the families impacted by DIPG, a way to meet one another before the morning.  We travelled over to Bethesda and enjoyed a great dinner with so many that have experienced their own battle with the monster DIPG. 

Social media creates a place where we can connect, we can support.  In recent years’ families have a space to share their journey during and after, in that we have all become connected.  We connect, converse, share pictures and those families are on my mind.  We get to feel like we really know one another.  Jenny Mosier gifted us a chance to really meet and put a human to the relationship we had been building in social media.  It was a great night.  I was proud to have my girls along and my Mr. Rick… Madeline’s aunt and uncle even got to meet and connect.  I love the gift of connections…

We ate and laughed, in the moments we connected and conversed about our lovelies in heaven the energy changed.  We all know the feelings, we all know the missing.  We could talk about how our child presented, the life some had in the ‘honeymoon’ period and sometimes about where our children are buried.  We all know the missing… the hole inside our heart and soul and future that will never be full again. 

This morning we got up, albeit later than we meant to, and trekked back to Bethesda.  We donned our Team Maddie’s Mark gear and walked up to the podium to see and hear the welcome and reading of the Super Heroes.  We met up with Lola’s Family, from out ‘Lola’s Heaven’ Best Day Ever.  Lola was today’s Honored child fighting DIPG, she is a superhero.  She is a light.  We caught up and then we took our place at the back of the line, for slow people and strollers.  My sister and brother in law ran the race so it was just us back there.  I was lucky and grateful that Gabriella’s mom, Ellyn, was ready to walk at the back too.  I have watched her journey and advocacy for years now.  I first learned of her daughter Gabriella Miller in the Truth 365 video way back when.  She, at only 10 years old, was amass in knowledge and was bold beyond her years.  She told the person taping her video when asked what politicians need to know- “Talk is Bullshit, we need action”.  Her infectious giggle followed her answer, bringing her back to the 10-year-old part of her.  She was so right, still is.  I loved getting to walk with Ellyn and talk about our girls, their journeys and the fact that is sucks that we met this way.  I don’t think she knows how I admire her…

We finished last, but really I just went for a walk with pretty amazing moms.  I so enjoyed it…

A part of my heart was so glad and felt joy connecting, I felt the energy in that run.  It is the kind that sustains us and keeps us in that moment.  I never get to feel the hard of those moments in them.  I just stay right there in the energy.  I can feel it later.  I can sit back and think and feel it out.  Now I sit…

I revel in the energy of so many coming together, but hate that we all know the story.  The fact that there were so many there reminds us that there are so many impacted with DIPG and loss.  The joy of the energy of those people and runners is laced with the pain of loss and brokenness.  In that loss, I know that God works in the connections, in the building of the brokenness and the caring for the hurt.  I know this.  Today was one of those… amazing and beautiful laced with pain and loss.

I see change.  I see new ideas and research and trials in these years.  I see so much change since 2012 but not enough.  I want there to be a day that the energy of the Foundation built to defeat DIPG has no need, has no more extra energy. 

It is so hard to think that just today I walked with a mom who will ultimately say goodbye to her daughter, and let her go home to Jesus.  I saw a lovely who ran and smiled and laughed but will join God in a time far sooner than we all know she should.  I hate that part.  I love the connection and hate the hurt we all feel, the fight we all battle.  Life… is amazing laced with hard.  It is what it is…

After a 6k and a busy weekend with my sister, Mr. Rick, Uncle Nathan and my girls we are snuggled… enjoying some simple time.  I think we might even squeeze a little Beauty and the Beast in…

Tomorrow we travel and get back to normal- grateful for the experiences and the time together, grateful for the connections, conversations and moments we all shared.  Until next time you DIPG families… I see DIPG research achieving a level that HOPE is word we can use when we talk about it…

Sunday/Mother’s Day

 

I am not going to lie, today I feel pretty low, heavy and sad.  I woke up this way, in fact I woke up several times feeling this way- I even felt this blah sad feeling before bed.  I am trying all my strategies to stay up and not let the heavy feeling ruin the day my girls planned for me.  I worked out, took a walk, showered and went to Target… I smiled and ate my lovely eggs in bed, I let Lucy massage my feet even though they were freezing and I ate salad made by 2 girls I love a ton.  I am trying…

I don’t really know what the specific trigger is, just that today I miss Madeline.  I wish I lived closer to my sisters so we could have an afternoon of craziness with little ones and one who has a permit.  I see trios of lovelies with their mommas and know that the days of that are over for me.  It’s just us… just my itty bitty family.  I love that they have their trios, their full families.  I know their lives aren’t perfect, I love seeing those mommas being spoiled and cared for.  I love seeing husbands thank their wives for all the building we do, for all the sacrifices we make as moms and parents.  I am so happy to see others happy, I am just sad in my own corner.

I just miss her.

I miss seeing her in the midst of a birthday party celebrating her baby Lucy.  I miss making her costumes and planning her birthday.  I miss the way she smiled at me and the way she loved me.  I always felt like Madeline heard me, like she listened.  I miss that today I only got 2 lovely cards… I wonder what kind of card she would have drawn for me.  Madeline told me over and over her Kindergarten year that when it was Mother’s Day she would make me breakfast in bed, thankfully her sisters have always done that. 

Today is about being a mom and honoring other moms… in my world being a mom means missing a third of the ones who made me a mom.  I am forever grateful for the time and honor of parenting her and my girls.  I feel like I got the coolest and most unique set of girls God ever made- I am sure you feel that about yours.  I am trying to redirect my brain and heart to smile today, to not be sad and not be mad.  My girls deserve my attention and smiles…

It is hard to do all of this, it is hard to live without. 

Today I keep chugging, keep moving.  I keep redirecting my brain to a path that helps me remember good and positive.  I will keep smiling and thanking my girls, and reminding them to not make a mess or stop fighting.  I think I finally get my mom’s request for ‘5 well behaved children’… I used to tell her we wanted to get her something we could buy, that gift is impossible.  Now I get it…

So for now… I get through a Sunday, an important one- but one that is hitting me hard this year.  I will get to bedtime and sleep and tomorrow will be Monday.  I am enjoying the girl’s plan for the day- minus their choice of dinner (all things they like…) and I am grateful to be their mom and help build them as they build me.  I can’t discredit my sad, my missing… it is just here for the day.  My missing part is a part of the deal… part of the time moving on gig. 

I can’t go under it, I can’t go over it… I just have to go through it.

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Happy Mother’s Day to the mommas I know and love… for all that you have taught me and for how you have helped build me into a mom for my girls.  Happy Sunday for those who just need a day of the week… Chin up, bedtime is coming, and tomorrow is a new day.

3 funerals, no wedding.

I will never not break inside when I see my child hurt.  It is one of the hardest part of parenting.  I mean the big hurt, the shoulder shaking sobs that just break my heart.  In those moments, I always just pray I keep myself together for my girls, so they can just feel what they need in those moments. 

The other night, after a very cold baseball game, we settled in to watch a few Golden Girls episodes and warm up before bed.  Amelia went to grab Pinky, her pet rat.  I saw her lean down and open the cage… and look in.  She touched him and he was cold.  She was immediately upset, filled with worry and pain for her pet.  She broke into sobs and I got moving.  I took Pinky out and assured her he had passed in his sleep, he looked so calm.  I wrapped him in a small blanket and handed him to her to hold.  She pet him and felt his hands… the only time she ever felt his whole hand because he usually pulled away.  I grabbed my clay and my ink pads… we sat and made clay imprints of his paws, nose and tail so she would have a physical and tangible keepsake to feel.  I loaded his paws with in and printed them into little cards for her to save, to write all that she loved about him.  She cried for a long time, and woke up emotional.

Through it all I just tried to calm her and reassure her that he was not hurting, that he is with Madeline and she is probably showing off her rat right now.  She asked if we could bury him and I of course agreed.  Lucy has been hanging on to her friends (Jack and Jake) the Hissing Cockroaches who passed for months.  She wanted to bury them as well.  So… we set out to have a funeral yesterday and celebrate the lives of our friends who are no longer here.

It was a process for the girls to prepare final resting places, dig holes, set up chairs for the services and of course write Eulogies.  Just before dinner last night they called Rick and I to the yard for the services, Lucy was the ‘Priest’ and she led to service.  She spoke about each of the pets and how they lived good lives and we all hope they Rest in Peace.  Amelia wished for Pinky that he was as happy in heaven with Madeline as he was here on Earth.  I thought it was pretty profound…

Some might roll their eyes at this loss, but I will tell you loss is loss.  We cannot and should not avoid the feelings associated, the hurt and the missing.  My girls know what it is like to miss the most amazing sister.  They know what it feels like to wake up one morning to not have that skin next to them, and now the fir… or in Lucy’s case the exoskeleton.  Loss is loss, pain is pain.  Not honoring or feeling it is a injustice.  Some kids can lose a hamster or 20 and be ok, to others it is a heartbreaking reminder of moving on without. 

When Madeline died, I learned a lot about how to memorialize and remember.  I try to get to every child and pet to make clay imprints.  I try to get those ink prints… so later we can find them and remember.  I know that having a tangible keepsake can be a priceless gift to someone who is missing another.  I also learned that we all do it DIFFERENTLY, respect the different.  I knew in the moment I saw Amelia’s shoulders sink and heard her words… that I would let her do this the way she needed.  I honored Lucy’s desire to double up on the funeral and lay Jack and Jake to rest… I also looked forward to them not being on her dresser.  When Jack and Jake passed Lucy held each of them in their last moments, she wanted to make sure that when they left they were ok.  She knew her job as their ‘mom’ was to get them to their final place as comfortably as she could.  Now they all lay under my trees… with lilacs and simple petals over top. 

As Rick and I sat and listened to the girls I thought about how thoughtful and compassionate they are.  He messaged me later and told me the same.  I love those girls fiercely, just as I am loved by Him- Fiercely.  I am grateful for all the moments we keep accumulating, I am honored that He gifted Madeline to us for her moments.  My girls are grateful for the moments they had with the pets, kids, they loved.

In our back yard, our little hideaway back yard, now lies some of our missing friends… they will be there for the adventures, BBQs, swinging, bonfires, lawn mowing and laying in the hammock with us.  I love our little retreat… I love my girls compassion and simple faith.  I remind myself another day- God is GOOD, always.