Commentary: Best.people.ever carried us in a broken world

—  Photo from Erin Musto

Held tenderly by her father, Madeline Musto is dressed in white for her First Communion. She made her confirmation as well and chose the name Madeline Elizabeth “Madeleine Sophie” Musto. Her family now connects with God at Saint Madeleine Sophie Parish in Guilderland, her mother wrote.

—  Photo from Erin Musto

 “The Musto chicks,” as their mother calls them — from left, Lucy, Amelia, and Madeline — hug in front of their house. They are dressed for a fancy dinner night in 2011 to celebrate their mother’s birthday, with Madeline wearing sparkling red shoes.

—  Photo by Alexandria Schneider

Family embrace: The Musto family smiles for a portrait at Tawasentha Park in the fall of 2011. From left are Amelia, Matthew, Lucy, Madeline, and Erin Musto.

—  Photo from Erin Musto

Madeline Musto’s last birthday party is marked by five candles on her cake, as she smiles impishly beside it. The June 2011 celebration included a bonfire and was shared with her grandparents, aunts, uncles, and cousins.

All and all, I am a positive person; I know that people are generally good.  I sometimes need little reminders but have gone through life knowing there was a God, knowing that people are pretty good, and knowing that I should surround myself with good people.

Little did I know that this bit of knowledge would carry me (and still carries me) through the hardest possible life event.  Little did I know that this optimistic belief and these “good” people would change my family’s world.

Feb. 3, 2012, my 5 ½-year-old daughter, Madeline, was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brainstem tumor that would take her from us in weeks or months — or, as we learned, only days.

Madeline was an amazing, kind, compassionate, and silly girl.  She wandered through life with such a positive energy — a happy light that surrounded her.

It was rare for her to have a temper tantrum or meltdown; it was rare for her to act out in real anger; it was rare for her not to be in good spirits.  I often acknowledge that many of my positive qualities, which I can see, were learned from Madeline and being her mom.  Looking back now, she changed me sometimes by only an action, a word, or an observation I had while she was my lovely oldest daughter.

Our world broke on Feb. 3, 2012.  Our life changed in ways we never imagined, and the world moved far too fast for my liking.

Madeline was sick and getting sicker, slower, and less Madeline by the moment.  We were in a flurry — angry, shocked, disbelieving, sad — anything but productive.  Our doctor, in a way, stopped the grieving and sad process from starting when he said, “Enjoy this time, even though it is hard; make the best of it. You will have a long time later to grieve and be sad.”

Those words resonated in our brains.  We left the hospital OK and kind of wrapped in a cocoon of our people — our best.people.ever.

We left and I worried: What would we do? Matthew, my husband, reassured me that Madeline would let us know what to do.  I know he was right; in a weird way, everything worked out the way Madeline wanted or would have wanted and I am confident of that.

The moment we walked into our home — our house full of family, happy and positive to see our lovely Madeline — our people started moving mountains and, goodness, they moved big mountains.

After Madeline’s “homecoming,” I asked her where she would like to go and what she would like to do.  She told us that she wanted to go to the cottage that we spent our summers in, the tiny, simple cottage that held many easy, fun, and laidback memories and sunsets.

Unfortunately, it was February and that cottage wasn’t winterized.  So we got moving to find a place for our whole family to have a retreat (all 25ish of us) with a cottage or cabin feel.  My brother found us a cabin in Lake Placid and we planned a reunion up there, to begin the next day.

A room of her own

Madeline really wanted her own room — like the one in the cottage.  She wanted her own bed and TV.  While we were out getting professional photographs the day after she was diagnosed, our best.people.ever were busy setting up a new room for her.

They converted our nursery into Madeline’s bedroom with an iron bed, TV, desk, and decorations.  That night, Madeline hosted her only ever “Cousins’ Sleepover” with candy, popcorn, and her favorite family snuggled watching a movie — in her very own room.

I remember her waking up next to Matthew and she was making her bed; she told him that Meme and Lucy, her sisters and partners in crime, couldn’t mess it up because it was all hers.  That was the last time Madeline slept in her very own bed, in her very own bedroom.

Feb. 5, 2012, Madeline made her first Holy Communion and Confirmation.  It was a lovely and special occasion full of so many of our family, friends, and supporters.

I am often in awe of what can be done in only a couple of days, really and truly only several hours.  Madeline had a perfect white Communion gown, gloves, purse, and Hello Kitty shoes and headband.

She was allowed that day to make her Confirmation as well, and took the name Madeline Elizabeth “Madeleine Sophie” Musto.  I asked her how sure she was of that saint; we picked a long name and this was a very long official name.  She still chose this as her confirmation name.

In my mind I thought, “Erin, this poor girl has four long names to learn. That is a lot, but it is quite beautiful.”

Little did I know that her choice was really a way she shared with us where she wanted her services, and, in essence, where her family should go to find and connect with God once she has left us (Saint Madeleine Sophie Parish in Guilderland).

We left the church to bring Madeline to an amazing, full, and fancy party to celebrate her big milestones with her favorite people — our family (who came from everywhere), her friends and many supporters, and people we have met along the way.  It was fit for a — Madeline.

There were two fancy cakes, catering, and perfect banners all over the room.  God sent some helpers for that day to give the energy needed to pull this off and the energy to attend and be present for Madeline.  Not one of the people who set this up missed her smile, her coloring, or her being there — somehow they still managed to be there for her. 

We left the hall and headed on our family reunion adventure in Lake Placid.  What an adventure it was. It was full of events that Madeline could enjoy and moments that I hold dear.

It was the place of Madeline’s last smile, laugh, and moment with most of her family.  It is still surreal to think that her last night of living and hearing and smiling and being Madeline has already passed.

We spent our time in Lake Placid doing crafts, visiting ice castles, and doing pottery — and just hanging out.  It was a special and scary trip.

Singing Madeline to heaven

We woke up on Feb. 7 and Madeline had changed.  We rushed back to Rotterdam to get home and see her doctor.

Madeline was very sick that day; she was tired and full of vertigo and nausea.  Dr. Porter came to see her at 9 p.m. and was pretty sure that she would just need to come in the morning for a port and to stay calm.

Madeline’s breathing changed hours later — the sign that she was really changing, and her tumor was progressing.  We rushed to Albany Med and, all of the sudden, we were surrounded with medical terms and Madeline’s life ending.

I told her she could wait for her sisters, that they would be there soon.  My friend brought them and they were there for the night.  They sat with Madeline as we talked and sang Madeline into heaven.  They were there holding her hand and assuring her that we would all be OK.

I think Madeline knew we would — I think she knew God gave us the best.people.ever.  I don’t think she would have left us if she didn’t know that.

Feb. 8, 2012, we had the last moments with our lovely, kind, and compassionate darling — our last moments as a full Musto family — and it still feels like moments ago.  I can sometimes feel her skin and hear her slowing heartbeat; I can still sometimes feel her.

Those days after are a blur. I moved through them.  We moved through them.  We expressed our needs and wants and hopes — and the world moved mountains again.

Madeline’s service was full of perfect-for-Madeline-music, people and words that really mattered, and little bits of sun that shone through the windows. Somehow, we found and chose the most perfect spot for Madeline; it is one of the best places for me to be, for our girls to be.  It is our place of peace and calm and picnics.

My only request for my friends and family, for her services, was that it be “us,” that it be “Musto” — full of family photos and happy moments and an atmosphere that allowed people to share their happiness about Madeline.

Those darn mountain movers went above and beyond — distressed photo frames, little bits of Madeline’s art and our families words surrounded those who came to share her.  Her wake, after the funeral, was like her wedding could have been: the flowers and food, the ambiance of positive Madeline, the friends and family gathered in one room, and the ways that they created to remember her.

Everyone there left a little note, prayer, or memory of Madeline on a tiny purple butterfly cutout; I still read them often.  I see and read the words and lovely little pictures the kids drew.  I know she was loved, is loved.

Friendly mountain movers, best.people.ever, sat up all night and made polymer clay purple (many shades) butterfly pins for everyone to wear and remember and see, a thoughtful token of their relationship to Madeline or Matthew or I.

I am still terribly numb, often.  It stinks, but I look back at this moment and memories and the ways my best.people.ever supported us — Madeline and our family and I know.  I know that God gave me these crazy and amazing people to save us.

Carrying on

After Madeline was gone, those amazing people arranged cleaning, cooking, play dates, numb-time and they all make visiting and talking about Madeline a “normal” in their lives and their kids’ lives.

My girls aren’t normal.  Their sister is not here; she is in heaven.  Their normal includes picnics and birthdays and holidays at a cemetery, balloons and lanterns as a way to remember their lovely, and events and fund-raisers are a normal for them. 

We started Maddie’s Mark Foundation to honor Madeline and create these wonderful experiences with no work or hassles for families going through similar and very different journeys.  We create experiences for families with sick kids and emphasize enjoying time and “best days ever” for regular families by building playgrounds, spaces, and such for families to enjoy now — before life could change.

Amelia (Meme) and Lucy get it; they know that Madeline is OK, and in heaven. Often they bring me back to OK and functioning. Often they remind me to enjoy my time and create our own “best days ever.”

My girls are becoming best.people.ever for others. They help us create “best days ever” for families going through worst-case scenarios.  Those girls are tomorrow’s mountain movers; they are the future of Maddie’s Mark Foundation.

They help us with events, fund-raisers, and actually creating best days ever.  They help me buy items for kids’ baskets, create Maddie’s Elephants, and most importantly share their sister in their words.

I love them; I love them for keeping me and Madeline alive.  I love them for making me smile, yell, and react when I want to hide in a hole.  I love them for bringing Madeline with them on their life’s adventures and journeys. I love them like I love Madeline.

I love my family, my friends, my husband, my lovely set of Musto-chicks, and I love that I know God has so many carrying us through this, so many best.people.ever carrying us still through this.