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…

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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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Time builds our Tapestry

5 days…

5 days. 14 years as a PICU nurse. Thursday to Tuesday. I work in the ED now, I spent 14 years as a PICU nurse.

We don’t understand, but we remember.

 

This past weekend was our 6th Annual Softball Tournament and it was sunny and full and hot and competitive. I love all of the returning teams, meeting them and hearing why they always come back. Getting to talk to little ones who came to watch their moms and dads play- and tell them what the game really meant, why these people were all playing. I never go into the details about Madeline, just that she was an angel and now we have a job to create ‘Best Day Evers’ for kiddos who are sick. It is the best kind of day for me. I always take note of the energy it brings into my soul, definitely not my body, that part is so tired after. I tend to keep myself pretty safe at those events, I never enter the hard parts there… just relish in the light parts.

Every year of our tournament there is a Team Albany Medical Center, they are always on one of the farthest fields. I love that they come. I am reassured every time the Nurses, Doctors, Social Workers, Child Life Specialists and Clergy come to events or take time to meet- reassured that we are doing our job, carrying on Madeline’s purpose.

Madeline’s Purpose: It is more than just a way to get through the grief and loss. It is more than a way to take care of other families with this story- it is way more. It is Madeline’s work… this is the job she left for us. I believe this. I see this. I feel this. I KNOW THIS… it is a fact.

One of the nurses from Team Albany Med came up to talk in the pavilion, and I entered that conversation with the emotional distance I maintain for these events. She said “5 Days… 14 years as a PICU nurse… Thursday to Tuesday”. I was pretty blown away. She told me she finished her Nurse Practitioner and is now in the Emergency Department. I thanked her for coming, for caring and for carrying Madeline. She said “5 days, 14 years in the PICU- we do not understand, but we remember”. I struggled to stay composed. She hugged me and headed back to the field to enjoy the rest of the sunny Best Day Ever- that is what we do. We speak it, we feel it, we cry, we hug and then we keep living a good life… we carry them along.

I don’t foresee myself forgetting that feeling and that moment ever. I sat there… asking myself if I knew that it was a Thursday to Tuesday… those days are less like days and more like a compilation of moments. I can tell you the order of moments, the emotion… I can remember them so clearly when I let my brain reenter that time. I don’t do it often… but I don’t know if I have ever just thought of the days. Thursday to Tuesday…. In all of her years of shifts how many kids came into her care, how many entered her world on a Thursday…

It is a reminder that God was in charge in those moments. I will never even know the scope of the work Madeline’s life does… how many life tapestries she is woven into? I am sure I can not understand the grandiose plans He had for her short life and long legacy. Madeline’s work is still getting done…

I am grateful and humbled that those Madeline influenced are brave enough to tell me, I can’t imagine not knowing. I remember her PICU nurse reminded me of my cousin Sarah, then a PICU nurse in Syracuse, she sounded just like Sarah. It was so comforting. I later learned that Madeline was one of her first patients and changed her forever plan- her nursing career. I always look back and see the stars aligned, the world working hard to do their jobs… not knowing the time left, not knowing what their actions would create in the future. Some might say it is just a coincidence, however I know that there are no such things in this life. All threads in a divine and beautiful tapestry that are being woven as we move through life… as we fail, succeed, laugh, cry, share, hide, build, break and live. At any given moment that tapestry might be so ugly, filled with dark colors and no clear pattern- but in time that dark spot is surrounded by stunning golds and bright blues, and the beauty of it all can be seen… the more time goes by the more complex and layered the tapestry becomes… with rich reds and dark greys- some yellow sunshine woven in there. There is fear and love and acceptance, anger and forgiveness, weakness and power and judgement and failures and pride and joy… and so much more in our life tapestry. I love that part… I wonder what mine will look like at the end of my time here or maybe it is still being woven when I am no longer hanging out on Earth. All will be revealed…

We don’t understand, but we remember. 5 Days. Thursday to Tuesday…

Understanding is not the lesson- but remembering is….

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The Struggle is REAL…

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Ever wake up and know it was going to be a crap day? One of those days that everything, almost anything that could go wrong, goes wrong. It might be a Murphy’s Law kind of day. These are the days that most people label FML days…

I did. I don’t often, but you better believe it was one of those days.

Let me tell you about that day…

We had a big and exciting event planned a couple weeks ago, but Mother Nature had a different idea, as she often does. A day that was supposed to celebrate and highlight a local community project, a day of fun in the sun, became stormy and rainy (think Forrest Gump’s descriptions of rain in Vietnam kind of rain). The event was moved to the next week, and then the task of sharing and updating press releases and all that jazz came into the picture. It was definitely a downer for the morning. I finished that part, and told the girls the ‘good’ news, that we had a stay home day and there was no need to get out of bed. I then ran to the cable company to switch out the modem, and of course came home with new shiny equipment. To many this gives them excitement, for me it gives me anxiety. I like when technology works, I like when I can stay out of it and not think about it. I came home with the new goods, the girls were excited, but I was anxious. I followed the directions and got it all set up, then called. The cable in my house was old and not used for a long time, so that needed a service call. I was trying to not be angry that I would have to be around for a service appointment. I was also trying to not be a pain in the butt to the nice lady on the phone. She connected me to the internet guy and I waited a few on hold. I wandered into the garage to grab something and noticed that the freezer door was open a crack… ugh. I opened it up and all the food was starting to defrost. I was talking to the internet guy and unloading the freezer… I am sure I sounded annoyed with him but I was honestly annoyed with myself. I was overwhelmed. I kept my shit together though. I got off the phone with him, and set forth on the new mission of cleaning my freezer… I struggled.

I had to throw a lot of food away… I was more than annoyed I was sad. I worked to fill that freezer and one clumsy move and I lost it all. I guess I didn’t lose it all, it just felt like it. I had to quickly meal plan healthy dinners for the fall that worked with what I had on hand. I got the crockpot going for fajita soup, eggs and spices for turkey meatballs, 2 different stir fries to use lots of veggies and taco meat precooked for meals. It was a lot of work in my tiny kitchen- that I definitely did not plan to do. I reminded myself of that fact that often times nothing I plan to do goes how it should. I worked really hard to not get mad, to just do it and get it done. I remember growing up the days the freezer was left open were not good days, they were stressful days and my mom was not happy. I get it- the waste and the work. I tried to not react with all the stress I was feeling… I struggled.

I went in the garage at one point and heard a high pitch sound, like a bottle of soda was leaking air. I looked around and thought ‘nothing else better break today’. I went inside and cooked more. Lucy took the dog out and came running back inside ‘MOM a chickmunk in the garage, a chickmunk!!!! He was standing and hissing at us!!!!’… Now Sparky had to go out front for a while and we had to go buy a trap. I left the back door open, in hopes of the chipmunk (or in Lucy words chickmunk) could leave on his own- but I was scared he would stay… and destroy my garage. After all the cooking and cleaning we headed to Walmart- where they do not sell rat traps. We headed home in the rain, and I had just decided to try to let it all go. I tried. The girls fought… and poked and poked and picked at one another. I struggled.

The night did not end well, I should know better, when my emotions run high it offsets our balance. It is like the girls just steal and absorb my stress and anxiety. There were fights and mean words, and high energy- all when all I really wanted was calm and quiet movie time. We tried, we failed… we went to bed.

In that terrible, horrible, no good day… I can see little bits of good, now. I have a clean freezer full of meals ready for fall. I cleaned my freezer in the kitchen out to fit more. We now have faster internet (I just wanted it to work) and we have cable- the bill is less than before too. We got ahead on the living room project of painting and prepping. We didn’t get to bed until really late- or at least I didn’t, and I slept in so well. It all looked better after we went to bed…

I tried, I struggled… I went to bed. In the light of today it all looks better. Often times even the most terrible, horrible, no good, very bad day is better when we remember that ‘Mom says some days are like that’ and we chose to go to bed and start over. Accept and acknowledge the struggle- and let it go. Look at any positive- even if the only good thing is that it isn’t yesterday anymore…

Don’t be sad…

From the moment we are born we are approaching death. Today I am one day closer to dying than I was yesterday. We all are. We will all die, it is a truth, a fast. The details around that fact can vary greatly… we could have lots of time or little. It is an unknown, but sometimes it is not. Sometimes death is not so far away… sometimes it is so very tangible.

“I didn’t think I would make it to see ‘The Last Jedi’”

“Did you want to be a pilot when you grew up? I want to be a baker, but I won’t get to grow up.”

“Don’t be sad.”

“Do you see how she lost her arm? I used to be able to walk, don’t you ever take those things for granted.” (While watching Soul Surfer)

Death is inevitable, but each of these words were spoken by a young person coming to terms with dying. These young people had to come to terms with their mortality and time here on this Earth. The lessons I have learned from them are so important. I carry these young people with me, and I think of them so often.

Sometimes it is so hard to stay open and meeting ones that may ultimately join my lovely… but it is such a gift to be a part of a person’s life and story. It is such a gift to be a small support, a smile, a friend… to get to spoil or laugh with a person so aware of their mortality. Every loss is hard, every gain is a gift.

These past few weeks have been really hard, for me and for many moms and dads and beyond.

I was at a community event yesterday to celebrate a project that is busy creating best days ever for families… a Splash Pad for the community to enjoy. Watching kiddos run through streams of water and laugh… watching a whole school of Special Needs kids play in the bubble machine I brought. I felt tired but good, tired but happy. My friend asked if I had seen the update on Markel, one of the most amazing Best Day Ever kids I have gotten to spoil. I immediately knew that Madeline had a new friend, that she was there for Markel. Markel had passed away the night before…

While I was busy working and worrying about an event Markel was busy heading off to heaven. Her mom was busy entering this new world of grief and missing… Markel’s request- Don’t be sad.

Don’t be sad. That is easier said than done. I am trying, as are so many. I am struggling. I feel the loss lately… I see the light and love and gifts but I feel the loss. I am pushing that smile… I am not at all putting the hard away- I am just trying to follow Markel’s request and ‘Don’t be sad.’

I feel like so many parents are joining this club, the club no one ever imagines themselves in. We don’t brag about this one- it isn’t the Honor Society or the Key Club or Choir… it is the Grief Club. It is the Missing Club. I would be okay if this club closed up shop.

In the last several weeks several amazing souls left us for their next place… Cancer stole them. Cancer took their last laughs, their last perfect heartbeats and finally their last breath. These young people had MANY YEARS that were stolen from their future, and now they aren’t here like they should be. We are left to miss them and bring them along…

Tonight, I am thinking of them… I am remembering the gift they are to me, to so many. Charlie, Zoey, Lola, Markel… Kalina, Ana, Devon, Myles… Tyler, Ben, Catie, Nick, Will.

The thing is we don’t get to pick… we don’t get to pick the good stuff, the hard stuff, the crap, the amazing, the pain, the joy… we don’t get to pick. Our lives are our stories, and our stories are never easy… they are intricate, they are deep and lovely and difficult. No one, who is lucky enough to get to 70 years old, says ‘Damn that was easy’. Life is hard. Missing is so hard.

As hard as it is to miss, I can never imagine my life without these people, these current angels. Imagine if I never had my 5-year-old remind me of the simple importance of a Best Day Ever. What if the girls and I never ate chicken parm and hung out with Kalina, what if she never told us ‘Do you see how she lost her arm? I used to be able to walk, don’t you ever take those things for granted’? What if my life never overlapped with Charlie- and he never go to see The Last Jedi?   What if Lola never took that helicopter ride, what if I never got to see her change the world? What if…

Don’t be sad.

That is a hard one. You see, we are left here to miss the most amazing people. I want to honor the request to not be sad… I am struggling though. You see… I miss her soul and her energy. I already miss her dimples and her positivity. I know what her mom is feeling… how can I be okay knowing the pain her family is going through? I know the missing that is coming… I know the pain.

So… here I go reminding myself to not be sad. I am failing right now. I may fail tomorrow… I may fail next week. Who knows… but I promise you Markel that I will do the best I can. I will carry you along- forever. I won’t let you down… never.

Don’t be sad… focus energy on change, awareness, love of life and faith. Tell others about Markel and her journey. Talk about Childhood Cancer. Talk about life, and freakin’ live it.

Do Something…

 

https://sanvidgefuneralhome.com/tribute/details/573/Markel-Elizabeth-Carras/obituary.html

 

An hour of healing and building…

The thing about mass is that an hour in the House of God heals and builds. In only one hour you can walk in and walk out more fulfilled, more certain and reminded that His love has been there for ages. This morning, God made connections bigger than just an hour of worship, He had a plan.

I went to church with the hope that the message spoke to me, that the message was one I could carry through the rest of the week. I pulled in, in my beat-up Jeep, and was caught off-guard by my ex-husband’s mom, my Mother-in-law from that marriage. I feel like I might as well keep it simple and just go with Mother-in-law.   We sat alongside one another and held hands when we spoke ‘The Our Father’. I thought about a lesson in church school growing up, that we broke apart that prayer, and what it all meant. I sat next to a woman that I have shared so much of my life’s joy, my life’s heartbreak… we could be angry and bitter with one another. We should be separate… but we held hands. Only in God’s House would the profoundness of this enter my heart. He is the ultimate builder, The Creator.

The message today was one of my favorites. I love the story about Jesus having a HUGE gathering of people and having only five loaves of bread and two fish. I can imagine the people who thought He was crazy, to just feed those people with that little amount of food. He told them, ‘No worries- go do your job and there will be extra’. Just as He said there was extra… He fed 5,000 with 5 loaves and 2 fish.

I grew up in a way that we could feed as many that joined the table. The table was a place of annoying and sacred duty- there was no choice but to sit and eat right next to the sibling you hated that day. In fact, it is important to eat next to the ones that you are mad at or hurt by… I have seen many relationships mended in a meal.

The food amount was always the same, but any were welcome. If a family member stopped by or a friend they were welcome. It was like the pot roast could multiply to feed more, but maybe we were all just carefully sharing. Personally, I would just pray for boiled potatoes, not burnt ones.

As I have built my own home and family, I love to feed people. I love having people come and eat together- entering that sacred and annoying ritual. I love that ‘never turn anyone away’ outlook, I see Jesus in those moments. He is glad for that community, that sharing of the annoying and sacred ritual- knowing damn well that if more people come I will totally just open a jar of pickles and bust out the relish tray. Community is important, so important. We build community when we share our space, when we take care of others. What better way to take care of others than feeding them?

Today, as I sat next to my Mother in law and heard those words I felt like we were both invited to today’s mass. We were invited to share bread and hear those words. He does things like that, He mixes up the threads as He is weaving our tapestries, if we stay open. She and I could have said ‘hello’ and sat separately… but I let the feeling I had inside me tell me to sit together. I let the feeling inside me tell me that we were to enjoy that annoying and sacred ritual together.

Are you open to the community that He is building, are you open to the extra ones who might bug you for dinner? Just keep pickles well stocked and you will always be safe…

The thing about mass is that one hour in the House of God heals and builds…

jesus-feeds-5000

Stay Afraid, do it anyway

Always be a little afraid, a little scared… a little nervous. Nervous rides right next to excited, that ball in your stomach that tells you that you are a little uncomfortable. Get uncomfortable. Be excited. Jump into something new, something challenging- with that piece of uncertainty of not knowing if you can do it. Prove yourself wrong, that little piece of your ‘self’ that tries to stay safe and simple and home.

I love that feeling, that little ball in my stomach that reminds me I am alive and in charge of my choices. I can easily get rid of that little ball, and just say no or decide not to try something. I know this. I try hard to stand on the edge of whatever I am used to and jump into something new… it could be as simple as going to a group workout class or jumping in a pool without my nose plugged. When we live safely we get used to saying no, or not trying something new. I always have reasons to say ‘no’ to an experience, dish or challenge; we all do. I get in a place where I choose to sit and binge watch Netflix instead of saying yes to an adventure; we all do. We are in charge of our choices…

I love that scary feeling right before I go up to speak, my little ball of fear in my stomach. It is shouting all the things that could go wrong- I could trip walking up, I could forget all that I wanted to say, I might fill all my silences with ‘umm’. The best part of that ball of fear, is standing there and doing it. Walking on that ledge and jumping right in, then when I get back to shore, I can see I did it. I did my job, that ball of fear is now mine forever. I love being a little scared and nervous, it keeps me mindful of life.

Divorce helped me understand the importance of all of this. In those first weeks after understanding it was over, I made an agreement inside of my ‘self’- to say yes. I made an agreement to try new things and not say no- to not get comfortable and safe. I wondered how many amazing things I said ‘no’ to, how many experiences or moments I missed choosing to put that ball of fear away. It was easier than arguing or doing the scary thing and having it picked apart for ‘umms’ or mess ups. I reminded my ‘self’ that I get to choose and I get to be excited and nervous and own my fear. I challenged my ‘self’ to travel alone, try foods I always hated, say yes to impulses and jump right into my fear. I started to love that little ball of fear, that nervousness that rides right next to excitement. Divorce was the perfect place to begin building Me better…

I tell my girls to get scared- never stop getting a little scared. Listen to your little ball of fear and try it. I remind them that everything has a cost, not a money cost but a life ‘cost’. It doesn’t ‘cost’ much to stay inside your home and binge watch Netflix, you are pretty safe and secure. The ‘cost’ of going somewhere in a car is more than the ‘cost’ of staying home- but think of all the places you can go. The ‘cost’ of riding a motorcycle is more than the ‘cost’ of riding in a car- but that feeling of open road and wind is addictive. The ‘cost’ of flying in a helicopter is higher than sitting on our couch- but the world is so lovely from that vantage point. We all must chose what we are willing to experience and how much we are willing to ‘spend’. Life isn’t about staying on your couch binge watching Netflix… you need to step on a plane to see the Eiffel Tower, you need to hike to the top of the waterfalls to feel them. Think of all that could go wrong with the plane, the cars, a motorcycle… an accident, a fall, a poisonous snake… all the things to be scared of. Think of what could go right… a beautiful experience AND owning your fear, a speaking engagement AND owning my fear.

I love how nerves ride right next to excitement, and often you don’t have one without the other. I love how embracing that little ball of fear helps build us to be more brave and stronger- more in charge of our choices. I want to be in charge of my life- my choices. I want to be a little scared and excited- to be spontaneous and uncertain. I want to embrace that ball of fear and love it for all it gives me- courage, bravery, experiences, failure, love, adventure and maybe sometimes a new tattoo…

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