Building Experiences, always and anyway.

I finally sat down this week to open mail and get caught up on my work and writing thank you cards. I love opening Maddie’s Mark mail, sometimes I find cards from little children who sent their tooth fairy money, or an anonymous note with a donation in honor of a loved one. Some days there are many clay fingerprint imprints contained in envelopes waiting to be made into silver pendants for their mommas. The girls and I often take turns opening and reading, or looking at the tiny clay hands of those beautiful angels who are no longer here with their families. For many people and families that would be a terribly sad event to share with your daughters, but we Musto Chicks are not normal. To talk to your children about life and birth and death, gratitude and kindness… it helps me build better people.

Last week I got a few letters, but I was running around like a mad woman and left it unopened. After a week of working at school and coming home to do the runs to dance, squishing in a workout, first Reconciliation… and a trip to the doctor for a nice and painful sinus infection… I finally had a morning to sit and drink my coffee at my table. I sat down to open mail and listen to Mumford and Sons Pandora. I wrote a thank you to a paving company and a golf donor, then I opened a CAP COM envelope. I assumed it was a letter about a request for sponsorship, but was surprised to see it was a check and 2 letters. I read the top one, and started a thank you. CAP COM sent a donation at the request of an exceptional employee, who chose Maddie’s Mark to support. I recognized the name and I could not figure out why. I wrote a thank you and then read the letter behind the official letter, the letter written by the recipient- Jenna.

I realized why I knew her name. She gifted me the most special gift, her words and her experience. I so rarely get to read or know what our ‘best day ever’ families or kids fully experienced. I see posts, pictures and sometimes I get to be a part of the experience. I write and talk to families after, but I really try to let them be their own family, to share what they would like. I never want to impose on a family or their time. So many times I don’t know the recipient, I just work with the Albany Med Social Workers and Child Life Specialists to create a special experience and not know the families. I love that our Foundation and Herd make it possible to care for families without even knowing them, or sharing more than they can. It is a special gift. Opening that letter, reading every word… I cried. I don’t often do that, but it made me feel big. Her words made me smile and hurt. I smile because I know what it is like to look back on a ‘best day ever’ and I hurt because I know what it feels like to miss the most special person who shared that ‘best day ever’. I read her letter and I was grateful she wrote it, she might think that it is just a donation, but I know it is a reminder. I am reminded of the importance of Madeline’s work. I am reminded of those who have this journey because of cancer right alongside me.

I work hard, in life and parenting and Maddie’s Mark. I love it all, even when it is too much and I am super tired. I want unique experiences that are very personal. When I was called for this ‘best day ever’ I had never met this boy, this teen who missed his prom. I was asked to set up a date for this teen. I didn’t know his name then, and I said of course. I freaked out a little, when I was working to figure out what teens do for a date (ps no wine or drinks after dinner)… so I called up one of our past ‘best day ever’ teens and he helped me understand ‘BOY’ and ‘TEEN’. I wanted this date to be the closest we could to prom, since he had missed prom.

I was really drawn to the missing in this. I thought about the time when I went to prom and enjoyed all the bits of being a senior. I remember it well- nights of drive in movies, days of pep rallies and trying to rebel. I don’t at all wish to trade life in the here and now, but I remember it all fondly. I felt very sad that this teen missed those ‘normals’ and I knew I needed to deliver a rockin’ good date night. I tried to make it be a whole week affair, I had gifts shipped to the house for him to gift his girlfriend (the first time I knew his name was to send gifts from Amazon and get flowers delivered). I called the fanciest restaurant and Premiere Limo… but then I was lost. What else do they do… what is a date when you are a teen. I worried that it wouldn’t be awesome, and I stressed. I woke one day thinking about sunsets on Lake Ontario, being on the east or north made great sunsets, what if we could do that. I googled the beach in Saratoga that just opened, and it was on the east side of the lake- Brown’s Beach had sunsets. I handed over the rest to Dante, our previous ‘best day ever’ teen and he created the most perfect spot to enjoy the sunset, just the two of them. He set up Adirondack chairs and rose petals and chocolates. He made it just the way I could envision it. That couple that I now knew was a teen named Ryan and his lovely Jenna, enjoyed their own sunset.

I thought about that night and wondered how it went often. Dante and his family kept me posted and told me about the experience. I woke up knowing Maddie had worked her work. Life kept moving… adventures, school started, and events happened, Amelia turned 8 and the holidays were welcomed and enjoyed. All of the sudden it was winter and two of our ‘best day ever’ teens were receiving bone marrow transplants, new life. I followed via Facebook and saw all the fighting and hope and patience… until one day… Ryan went to heaven. One of our ‘best day ever’ teens was with Madeline, my heart hurt. I know that pain, which his whole family felt. I read his obituary and some posts and in my heart I know that this Jenna must be his soulmate. In all of the hard she stood strong, she loved anyway. It is hard to love always and anyway. To be a teen in love and give so much to another, to love always and anyways… is a gift. I thought about Ryan the gift his Jenna gave him, the gift he have her even in the pain. I know that loss and pain are worth the love. I used to just wonder and think about it…

Then I read her letter.

Jenna wrote about that night, about that week. She wrote about what that night felt like to her, and in my heart I know Ryan felt the same. I read all of her words and I will read them over and over… this letter was a huge gift. I am sure Jenna was glad to be able to share and support Maddie’s Mark, but I know it was more. Reading about her experience reminded me how important this work is. It reminded me that in all those hard days and difficult deadlines we are doing big things. All those stressful times are worth the amazingness of creating a ‘best day ever’ experience that replaces a missed normal.

Read this letter, be reminded. Service is a BIG deal… Thanksgiving is next week- beyond being grateful, do your job. Show your gratitude. Offer your service. Take care of others… I know you don’t need the reminder or the thanks or the Facebook share…. But little things mean big things. I didn’t need the thank you or the written words about this ‘best night ever’ but I am ever so grateful for them…

I am going to share this letter with you, so you all can feel it too. I want you to read and know this is from a beautiful, bold and brave girl who’s soulmate is with Madeline. I want you to feel the importance of a ‘best day ever’. I want you to feel her loss… her pain, right next to her joy. Jenna is here, for the long haul- Ryan is without pain and guiding with Madeline.   I want you to sit with her in her loss, and her pain. I want you to love her pain and her joy… I want you to help build her back up. I want you to feel it all and love her BIG. I want you to thank Jenna for her bravery to write this and share… I want you to send her words to let her know she is in your moments, your prayers and your thoughts. I want you to read this, and comment… share…. And help us change all.of.this.



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