Just for a moment…

Time moves and the world spins, it spins and spins. That is how the world works, how time works… the world spins and time moves on. I know this, I see this- but it still hits me.

It was a sunny, chilly and perfect Best Run Ever. I love this day- I get to chat and catch up with people I never get to see and I get to see MANY people run like cheetahs. Madeline loved to run. She would run in circles around the front yard, exclaiming “Mommy, I am as fast as a cheetah!!!”. I would always smile as I sat on a blanket and watched- and think ‘She is fast, but I hope she doesn’t get cocky about it.’ I remember her teacher telling me that Madeline would just run circles around the playground, not even play on the equipment, she would run with her friend. She would run ‘as fast as a cheetah’ on her playground, way back when.

I ran a marathon in October 2011. I worked that whole year to train and prepare to run 26.2 miles. Madeline would bring me my Gatorade after my long run and the rest of my girls would then run outside and climb all over my sore body as I tried to stretch. She was so proud of me. Honestly, I have no real regrets of the life that Madeline and my girls had, but I really wish I took her out of school and brought her to my marathon. All sorts of people told me not to let her miss school days- and now I know that educational and important experiences trump a day of learning to read or practice sight words. I wish she had been my real and true cheer leader, it would have made it perfect. Life is like that though…

Madeline loved to run. She was smooth and fast. Her runs would be accompanied by this infectious giggle, a little raspy and so very perfect. I miss her like crazy…

I love when people get together and celebrate and honor my daughter, it keeps me going. I had a hard time talking today, partly because I rushed up to the mic when my jeans were slipping down and partly because it takes a lot of emotion to live this… to miss her.

I didn’t mean to share about Madeline running on the playground in circles, in a way the 5k is a big circle to me. Every runner heads out there and finishes the circle- just like Madeline did around my tree and her playground. Part of this 5k is seeing MANY people, people who knew Madeline mixed with people who didn’t run together and build together…

Today was amazing. In that amazing is hard…

It is hard to see peers of Madeline’s… hard to see them grow, hard to see them run. There were only 2 of Madeline’s peers running today, and they ran like cheetahs. They followed that direction and brought her along on the run. It was invigorating and exciting to watch them cross the finish line- I felt so proud of them. That pride was laced with hard…

It is a special thing to see that while the world keeps spinning, and spinning and spinning… for a moment the world stopped again- for a moment it wasn’t spinning away from Madeline, but along with her. I always love my yearly hug from my girl’s preschool teacher- who knows my girls better than most, to get to see old coworkers who were knew Madeline, before we knew if she was a he or a she. I love getting to hug Mad’s Godmother, her old playdate friends, my old friends- one from high school even snuck down with her set of boys. It is special…

Today my world almost slows down… who am I kidding- it just moves on in it’s traditional Musto Chick fashion… working on Best Day Ever’s and a speech presentation for this week, getting my girls to the eye doctor and dance and Church School. This is the normal… the days when the world keeps spinning, but for one morning the world, most of it, slowed down to a pace I can tolerate and enjoy… for one morning it felt like the world was spinning along with Madeline.

 

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Does your day matter?

At the end of the day did it really matter? Did the things you did in your day matter or make a difference? Did you make a big deal out of a little deal, did you let spilled coffee or a fight with your daughter ruin your day? Did you stub your toe, back your car into the garbage cans or maybe forget something important? Did you get angry at the slow car in front of you or yell at the cashier for making a mistake? Did you stress all day about what wasn’t going right? Did you rush through the important stuff, trying to get your family to the next thing on the schedule? Did you fill your night with dance, soccer, tryouts, clubs, homework, reading and of course an hour of driving to all of the above? Did you go, go, go until bedtime and forget to enjoy your family, forget to eat dinner together?

STOP.

JUST STOP.

Hear me out. We get one shot, one chance to do this. We get one chance to do all the things we get to do in the time we have. Some of us will be here a long time, some of us will be kicking around on this Earth for over 100 years. Many people live to be 60 and 70 and 80 and beyond… they can reflect back on the speed of those years- missed adventures, funny memories and big bold moments. It goes fast. Sometimes it goes even faster…

Madeline only had around 8,700 hours to spend here, though we didn’t know. She lived them well, I can look back and see we did it pretty well. She should still be here, but we don’t get to pick the piles of life that we are dealt. Madeline had cancer- not just cancer but a fatal, inoperable brainstem tumor that always steals the last breath and heartbeat of those with it. She had a short life… a painfully short life.

We don’t get to pick… the hard stuff or the easy stuff. We don’t get to pick. I work with families that are going through the hardest things, not just cancer diagnosis, not just treatments… but add on Palliative Care. I work with families, often, who are preparing to say goodbye to their child. They need to hear that they need to trust their gut, that others opinions don’t matter and to try not to focus on those people who are living life and posting or saying things like FML. I am constantly using these life experiences and lessons to frame my life outside of support of others.

For every bit of missing, Madeline has taught me how to live better. I do my day with intention to do ‘what matters’. Sometimes ‘what matters’ is brushing something off your shoulder or reminding yourself it is a little deal. ‘What matters’ might be unpopular- but I try hard to choose it anyway. Oftentimes ‘what matters’ is inconvenient- we have dance, baseball, tryouts, meetings and beyond so we put off ‘what matters’… we try not to do that in our house. We work in the ‘what matters’… and we do ‘what matters’ together.

Cancer altered my perspective on life and living, on ‘what matters’ and time. I wish that lesson came from something else, imagine if I could still snuggle Madeline and watch her grow AND see life the way I now know it. I have never been a person who sees life for all the crap in it, and you better believe I.do.not.use.FML in my vocabulary… I see life for what it is. I see the amazing and hard, joy and pain, love and loss…

So… at the end of the day it is your responsibility to make sure you made the most of it, to know your time mattered. Remind yourself of what is a big deal and what is a little deal- also remember almost everything is a little deal. Remember that we are all doing life- with the hard and the joy, pain and the loss… right next to each other, that waitress or clerk or librarian or slow driver is going through life too. As far as overfilling your time- STOP. I know it looks like it matters, but it doesn’t. Don’t go to a random kid’s birthday party and skip seeing your family, don’t put all the work into 50 activities that keep you busy, don’t fill your life with a schedule. Schedule time for life… I promise you it isn’t worth it- I can only imagine what it would feel like if I had filled Madeline 8,700 hours with the filler crap and the activities that we push them into. JUST STOP… trust me.

We don’t get to pick the hard stuff or the amazing… but you need to be ready to enjoy the amazing and endure the hard. I didn’t pick Cancer and loss…

Make your hours matter.

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Forever Kindergartener…

20180906_060449.jpgThe horse tee shirt, a blue cardigan and those Gymboree jeans, best first day outfit ever. On the eve of school starting the clothes are all laid out and we are ready to get dressed. The little LL Bean backpack full of supplies is next to the door. The envelope for party money is labeled, the pencil box is full of fresh Crayola crayons, we don’t do Rose Art here at the Musto Estate. I think the Ticonderoga’s are sharpened, if not there are sharpeners in the classroom. No lunch packed, the idea of a lunch on a tray and milk in a carton is way to cool for a packed lunch. I am thankful that the first day is a half day AND I get to go too. Excitement and anticipation take over… a whole new era begins on that first day.

I am excited. I am nervous. I have never left my girl for longer than 3 hours at school. I don’t let my anxiety and tiny piece of sadness overtake the excitement. My lovely is so excited- to eat lunch in a cafeteria, to ride on a bus and to make new friends. I go to Bradt, she stands in front of the sign- officially entering Kindergarten. That smile… those dimples. We walk in and walk all the way to F9, the Lime Room, one of the farthest rooms in the school. I think about how those tiny little kids’ legs will be expected to find this room, to walk that hall over and over. How will that go, how do these teachers get the kids to walk that much? What if she gets lost…

We enter the Lime Room and take a seat, in tiny short chairs. The teacher has a white shirt and lime green beads, I think a flower in her hair. I think to myself, this is the perfect place for my lovely, I am a lover of big accessories and flowers in hair. We sit and listen to the little presentation- about the day, paperwork, allergies, and housekeeping for Kindergarten. It is time to color a sheet, my lovely opens her pencil box and starts. A little girl near by raises her hand, I can tell she is a bright light, she asks “Can I color with all of my colors?” I am smiling, this is going to be a good place for her…

The first bus day is Friday, our driveway is the bus stop, all are waiting in front- me with my coffee and camera, the kids with backpacks and running feet. Kindergarten begins…

September 2011.

My daughter Madeline entered kindergarten in September 2011, a 5-year-old dimpled lovely with the most compassionate heart and most beautiful soul. She loved the bus and lunch room, loved all the work in her classroom. My daughter Madeline would run in circles around the playground with her friend and tell me ‘Mommy I can run faster than a cheetah’. My daughter Madeline wanted to read a book, all.by.herself. She read me a book the first week of December that year, and I thought how awesome it was she could read. I wondered how many books she would read to her sisters…

My daughter Madeline came home from school singing the songs she was taught in music class. She loved anytime that I got to come to school, I sure loved those hallways. I remember her singing, in her tiny raspy voice, ‘You are my sunshine, my only sunshine’… and I helped finishing her song. She turned to me and giggled- ‘Mom, you know that song too????’.

I adored the little notes Madeline wrote me, I love how she wrote her name… never right on the line, with a mix of upper and lower case. The best time was when Mads got off the bus, she would run right to me, like she hadn’t seen me in weeks and hug me. We went inside, the littles would be napping, and we ate snack and watched Ellen. It was down time, we don’t do much right after school, still to this day. We all loved kindergarten.

In November and December Madeline had a few random fevers, she missed me at school and she often fell asleep in the Lazy Boy in our living room, sitting up, instead of going to bed. I talked to our doctors, worked with the school and we worked to get through it. I reminded myself kindergarteners often missed their parents in December… help her have tools and be okay. We knew we would get through this. I remember dropping her off and walking Madeline in. I would keep it together, and walk her to Mr. B and he would start her walk down, I would stay behind the corner and try to keep my shit together, sometimes I would cry there most of the time I held it together until I got to my Jeep. I would sob…. I couldn’t believe what it felt like to leave her and see her so upset. January came and the homesickness got a little better, but she had a couple random puke episodes. Madeline sometimes had anxiety, like her dad, so it always fit that mold. She would stay home those days and we would enjoy a fun crafty day.

I remember Madeline puked in my bed on the morning her dad flew to California. I chalked it up to anxiety and sadness. We had the best stay home day that day. Madeline planned a whole welcome home party for her dad- cake, homemade streamers, a cracker tray with kid cut up cheese and music she chose. She showed me in that time that she was a crazy good party planner- sadly she only planned one party.

At the very end of January, I remember getting a call from the school nurse, I was literally driving by Bradt School and pulled in to pick up Madeline. Madeline was dizzy during PE and really not herself. I brought her home, hydrated her and we stayed calm until dinner. I remember that night, when we ate dinner, I called Mads to the table and she had a hard time walking. She thought it was kind of funny, that her body wasn’t doing it right. I really thought she was still not feeling great, and again attributed to water consumption. Matt got a little over worried- and said “It could be a brain tumor”. I assured him, that that would be almost impossible- that we need to address the bits and not jump to that. It wasn’t uncommon for Matthew to jump to the idea that a symptom or illness was worst case scenario, so trying to talk him off the brain tumor ledge was not uncommon. We all went to bed and I knew I would call her Pediatrician the next day, we would have to get through the weekend first though.

The weekend was pretty ok, Madeline seemed happy and healthy. I remember we visited the Albany History Museum and saw mummies for the first time. It was a really great weekend and for a couple days we were back to ‘normal’. Monday came and Madeline went to school.   It was her last day… ever.

I called the doctor’s office to set up an appointment, after describing the recent days the nurse said “Write down any symptoms you can think of and come with them”. Suddenly… my brain started connecting occurrences and symptoms. I could see a change in November…

She saw her doctor, and then we ended up at Albany Med Emergency Room, very quickly her legs didn’t work. It was like my ‘normal’ healthy daughter’s left side of her body didn’t want to work anymore. It was so fast…

I can now see back to November little changes, but they fit the normal kindergarten things. I can see it all so clearly now… the thing is hindsight is 20/20.

 

Today… Madeline would be in 7th grade. She might be in chorus, maybe love to do pottery. Madeline, I imagine, would love science and lab and hikes and adventures. I imagine, Madeline would love school and be a builder not a breaker. I bet Madeline would be joining the Track team an running like a cheetah. I bet she would love reading and have polished off all the best books, maybe we could even share books. I imagine her locker would be covered with pictures of her cousins and the lake and sunsets and fishing and maybe, Justin Beiber. I guess probably not Justin Beiber, he was so cool back then and now not so cool. Life goes on… popular artists change. Madeline will always be a kindergartener who loved Justin Beiber, riding with training wheels and singing simple songs… but that is the life of 5-year-olds. Madeline is forever 5….

 

School starts, busses come, lunches are served, students wear new undies and socks, parents take pictures… and a new school year has begun. My daughter Amelia starts Middle School and Lucy starts 4th grade- time keeps going, the world keeps spinning.

Cancer stole her kindergarten graduation, her Easter party, her summer’s. Cancer stole her whole first, second, third, fourth, fifth, sixth grade years… it stole so much. Cancer stole her bus rides, her school lunches, her first day’s, her days done, her playground time. Cancer stole my lovely…

School starts… enjoy the growth, be grateful, be happy for your child and you… drink a mimosa with your friends after you go for a run and then run to the bus and grab your child and kiss them in front of your neighbors… scoop them up in your safe arms. Listen to them tell you about their day and enjoy them… take it in, sniff their sweaty foreheads, check out their skinned-up knees and let them tell you about the kid who drove them nuts that day, or how long it took for the bus to come home. I love seeing my kids grow, but every centimeter my girls grow is a centimeter that Madeline didn’t grow. She will never grow, she is forever 5, forever a kindergartener.

As your child goes off to school, as mine do, embrace it. Embrace all the parts, the growth and independence. Embrace the missing for 6 hours… I promise you will be fine. I spend all of my time missing…

Enjoy it. Embrace it. Smile… even when it is hard. I do.

As school starts I have a forever 5-year-old kindergartener, a 4th grader and a Middle Schooler. I will smile and take pictures, I will think about how lucky I am. I will move along, but I will cry and hurt in my smile.

Cancer stole all of that…

Cancer Stole- Her

Today the girls and I drove home from Lake Placid. We drove the same route we drove back to our home in Rotterdam 6 and ½ years ago, only this time it was just the three of us.

Madeline was diagnosed on a Thursday in the morning, we left Albany Med later that day to go home, only after stopping at Target to grab steroids. We went home to our family there, they did a pretty good job of pretending they were happy and okay. We were firm- we weren’t going to make Madeline uncomfortable, well any more uncomfortable than she was. My lovely, independent Madeline could no longer walk like she wanted to, she couldn’t tie her shoes and she couldn’t button her wrinkle free cardigan. She watched her sisters and cousins run and play… and she knew she couldn’t. In a matter of… pretty much 48 hours DIPG stole so much from her.

Our family left for the night and we settled in, and tried to enjoy time and keep Mads comfortable. Friday, we woke up with intention- we needed a cabin for our whole family, her Grammie suggested she make her First Holy Communion, we set up a photography session with the best, and many hands got to work on changing the nursery into Madeline’s own bedroom. All.in.one.day…

The photo session was hard, it was so bright and light. I didn’t feel that way, I felt like I might puke. I smiled and I watched my girls together… Madeline would have normally joined in to make her sisters laugh but she just did her best to smile. Amelia and Lucy didn’t understand. They laughed and ran around… I struggled. The best moments were captured and I am forever grateful…

That night was Madeline’s big ‘sleep over’, she hosted her sisters and cousins to watch ‘Rio’ and they ate junk food on her ‘new’ bed. She was tired but I know she loved being squashed on her bed with her favorite people God made for her. I guess I should restate her ‘sleep over’, we sent everyone back, after the movie, to their hotels so we could get sleep. I didn’t sleep for those days, I just lay there uncomfortable, feeling like I had a stomach bug. Grief and fear can look a lot like a stomach bug.

Madeline woke up the next day, Matt was on the floor next to her, I heard her say “Daddy, Meme and Lucy can’t mess up my bed!”. I smiled and wondered how long has she desired her own neat space…

On Saturday Madeline made her First Holy Communion and Confirmation. She looked beautiful. It was hard, trying to keep her hydrated as others ran and played. I can see her and feel her in her tiny white dress…

On that day her official name, in the Catholic Church, became Madeline Elizabeth Madeleine Sophie Musto, she chose that from a list I prepared for her to choose. I thought it was lovely and soooooo long… I told her that it is a long name for a kindergartener. I tried to make a funny moment and I am sure it was lost…

That day was exactly as it should be… even in the pain.

Somehow the world pulled together a party with 2 beautiful cakes and family from all over the place. We enjoyed it the best we could. We headed up to Lake Placid. I remember Amelia and Lucy rode with their grandparents and we were all laughing and being goofy at the gas station. We had all stopped to head out together, my cousins, parents, in-laws, and beyond. Grabbing snacks, going to the bathroom and filling up on gas. Madeline was in the middle of my backseat, one aunt on either side. They got her laughing, like the gut laugh, and I now know that was the last gut laugh. The very last one…

We arrived in Lake Placid to an amazing Log Cabin, with bedrooms and toilets galore. The kitchen was so inviting and the living room became one of our last perfect moments. Sunday was Super Bowl Sunday… and yet I didn’t even know what kind of football was going on. We just focused on Madeline and building moments…

We adventured around the Adirondacks… to the Saranac Ice Castle, pottery painting and Ben & Jerry’s. When we all made it back to the cabin in the woods, we settled in and welcomed our cousin to read and perform for us. He read Madeline’s favorite books and had the best sound effects. I will always remember how she shimmied up closer, off my lap, to him as he read. My last memory of Madeline smiling was sitting next to my nephew Nicholas as they listened to Lucy repeat the “Clomp, Clomp, Clomp” in the story, just like she did at home. I miss that smile… I will forever miss that smile.

Matthew carried Madeline to bed, I watched him. I remember her head on his shoulder as he walked to the bedroom. The next day Madeline woke up with extreme vertigo, she got sick eating pancakes. I remember bathing with her, thinking in my brain that this must be my job now, to bathe with my lovely. I didn’t know that it was her last bath…

We travelled back to Rotterdam soon after that bath. Matthew had called her Doctor and let her know. We purchased Dramamine and hoped that would keep her comfortable for the drive back. I remember all those twisty roads… praying she would be comfortable. She made it… today I drove that same road, that whole route…

We got home and I positioned myself in the recliner with Madeline on my lap. If I moved, even to itch my neck or adjust my hips she would wake and get sick with vertigo. I stayed in that seat with her for… so many hours. I remember the women from Make a Wish coming to talk about doing a wish to Disney. They told us they only needed hours to get us there to enjoy our time. I just kept thinking Madeline is so not a Disney kid, but if it works then it is meant to be. I sat still as a statue during that visit from Make a Wish. I remember hearing my friends stop and someone telling them it wasn’t a good time, I may have yelled to them, I can’t remember. I just sat still as I could be… until Dr. Porter stopped for a house call. I feel like it was 9pm when she got to our house, 25 minutes from the hospital. She was so calm. She made me make Madeline uncomfortable so she could assess her. It was painful. I watched Madeline in pain and stress from the vertigo. Dr. Porter told us she would see Madeline tomorrow to start a line and administer drugs for vertigo. She calmly and clearly told me that this could be Madeline’s life for a long time. She told me to sleep. I had not slept since Thursday night. She told me that the drugs they would give Madeline may or may not help her…

I took Tylenol PM to fall asleep focused on the idea that the medication they had might not help. Madeline had transferred to Matthew’s lap and I tried to sleep upstairs. Downstairs Madeline had a few episodes that felt like she couldn’t breathe, I heard and rushed down… it corrected itself and I tried again to sleep. I would look at my kitchen and see my little sister Molly and Raquel working on Madeline’s 100 Day project. I know they were trying to stay busy and out of the way…

The last time I ran downstairs I think my sister was calling me… I remember running downstairs. I remember the sound I heard. I remember Dr. Porter telling us “When the tumor progresses her breathing will change, it will have a click, at that point she will no longer be Madeline”. I heard the click… it was time to go to the Hospital.

I put on a Potsdam Hoodie and ran out the door with Matthew, I knew. I knew, somewhere in me, that it was the last time she would cross that threshold. I knew that Sparky would never see her again… and I loaded in the car- maybe with my purse maybe without. Matthew drove fast… and we called Dr. Porter. We pulled up to the ER and someone must have parked the Jeep. I don’t remember. They were ready for us…

Madeline was admitted to the same exact room Lucy was in only 2 weeks prior for a tiny concussion. We got to the room and alarms went off… we were asked about DNR’s and I kept telling them we aren’t ready for DNR’s she was just diagnosed. Finally, we were allowed next to her, we had called a friend to pick up the girls and bring them to us. Madeline looked so tiny, so ready. I remember singing to her, in front of a male nurse or EMT or whatever… I told her “It is okay to go, we will be fine. If you can wait your sisters are coming…” and she waited. They moved us across the hall. The nurses had created a big bed for us, by connecting two beds and putting sheets down. Madeline was in the center, I was to her left and Matthew to her right. Amelia was next to me and Lucy sat next to Madeline’s feet. We talked to her… we told her it was okay. We sang her to heaven…

ABC’s, You are my Sunshine and Twinkle Twinkle Little Star… all of her favorites… and soon she was gone. I had laid my ear on her chest and could hear her breathing slow and her heart sound like it was flooded. I remember that moment… yet I don’t know what time it was.

The moments after are hard… all of them, even this one. I remember feeling like I could not leave there… I had never left her for long…

It was one of the most beautiful and painful moments in history, at least in my history. I sit here tonight and have again entered that time that makes it impossible to get much done, that makes me feel it all. I miss Madeline. I hate cancer. I hate DIPG. I hate what cancer stole from her, stole from us.

Cancer stole my daughter and all the years she could have changed the world. Cancer stole Madeline’s laugh and breathe and heartbeat. Cancer stole Amelia and Lucy’s sister and role model. Cancer stole her perfect dimple and awesome attitude… but it didn’t steal her soul. Madeline’s soul is still hanging out with us, guiding us and building better for others.

This is a hard spot to enter. I let myself today, because it is September. I let myself enter this space and share in hope that this will change… what if sharing this changed something? What if a new set of ears hears this and they can change it… what if that is you? What if… soon we can talk about how far we have come? That is all worth the pain…

Read. Share. Comment. #GoldStrong . Yell. Create Awareness. Change this…

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