Just doing what we do…

 

Tonight we had our monthly Maddie’s Mark Foundation meeting. We sat with our notes and piles of work we were working on, while the girls played with friends. My brain was a little frazzled so I hope my report covered all of our Best Day Ever’s and work I am chuggin’ on. Thankfully if I miss something my team rocks, so I will send it along in a middle of the night reminder or voice text it in the parking lot at school. I love that we work so well together… it’s like we were meant to.

It doesn’t surprise me though, Maddie sends the right people in the moments we need them. She quite likes how we listen to her as she changes bits of the world. I meet families that I just treasure, I don’t doubt she loves she is able to help them. I know too that she is there to welcome her friends when they leave their jobs and families and pain here.

Maddie’s Mark is built on what the world did for our Madeline and our family. Madeline had so much to do with forming the mission of creating ‘best days ever’. She and our herd showed us what a ‘best day ever’ is. It made sense to fill the niche of best days ever and filling the need families have for enjoying simple and memorable time together in moments when their world is broken and changed and busy. We move the mountains and do the work so they can just enjoy their time, it is amazing and challenging work. We learned what to do, when we saw what others did for us…

We do what we do, because they did what they did… it made us aware of the needs and lack of resources families have in times of need. It showed us how the world could work together to support and make the world easy for families with sick kids. The world moved mountains for us, we learned how to move mountains for others. We were supremely taken care of, Madeline and my girls were spoiled and loved. In only days dreams and milestones and memories were made that would have taken years to acquire. This reality was that Madeline had days and many worked tirelessly for those days… so we do that now. We work hard as a team with amazing community to do Maddie’s work.

We learned what do to by those who did for us. We do parties, trips, bedrooms, experiences, moments, photography, milestones, yard re-do’s… and so much more. We do those things because they were done for us… we know the need. We fill the niche. Imagine your child needing a shady place to play in the yard while they go through Chemo, or a pool to cool off. Think of the biggest, coolest party to celebrate no more cancer in your body. How about wanting to see and experience snow, but your immune system can not be around others or out in the cold winter… and going to an indoor snow town. Sometimes parents lose everything and finally can get a small new home, but they need to renovate to be low allergen for their sick child… getting to set up a rockin’ bedroom for a boy who loves super heroes and hates allergens. Think about giving birth to a new and beautiful baby boy with HUGE health issues, never finishing his nursery out of fear. Decorating and designing a farm nursery for a boy to grow and a family to celebrate… what an honor. I could write about these all night. I will, in fact, wake up tonight with 40 more that I missed… but you get the picture.

Why do we do these particular things?

We learned what so many need by seeing and knowing what we needed. I think of Madeline’s First Communion and Confirmation- many pulled it together and dressed her and celebrated her and planned her party. We went on an awesome (and painful) trip to Lake Placid with our whole family. We had a photo shoot with the best of the best, she caught moments I can never have back. We set up Madeline’s own bedroom with new décor and her own TV, with the help of many. After Madeline passed many friends didn’t know what to do, so they just politely and kindly did. They took care of expenses for Madeline’s services and gave her the most beautiful wake, it felt like her reception. They cooked meals and delivered. They arranged cleaning people to help. They redid our yard and bathrooms. They helped to show my two daughters here they were loved and special and kept them busy. They pampered me when they could. I know those things helped us, helped us live easily without Madeline, helped us document moments in crazy and busy and confusing… those actions helped us make it to now. We try to help families get through their then, to their now.

Maddie’s Mark has allowed me, personally, to help many moms who have lost their children. It is an amazing gift to give these moms a tangible and forever keepsake that was made with their child’s imprint and time here on earth.

I remember parts of Madeline dying like it was only 4 minutes ago… 4 minutes ago I took a sip of water, told Lucy it was bedtime and started typing again- the night she died is clear like that. In my brain bits of Madeline’s death and the moments before are so clear. The nurses in the space are so clear to me, except their faces I can never remember their faces. I remember when we were moved to the room that Madeline died in, an ER room with two beds put together for us. There were nurses there, nurses that were quite different than the normal ER nurses. These nurses, these Trauma nurses, have a different and more special duty. I don’t know now who was in the room when I broke down because we didn’t get to celebrate Madeline’s ½ birthday and get her fingerprint necklaces at Pottery Place. I remember feeling like that part of her would be gone forever, all because she didn’t have enough time. I am sure I was focused on that to avoid knowing what I needed to know in those moments. I remember being VERY focused on putting her pearl earrings back on before I left her with those same nurses. Imagine leaving your daughter in a white room, with her pearl earrings and clothes from the emergency room. I felt safe enough to leave her with the woman who watched Nick with my girls at 5am, on a hospital bed, snuggled with my 2 year old and a 4 year old while we all said goodbye and tried to figure out what just happened. That same nurse promised they would care for her…

Fast forward to today… those nurses, that we hardly knew, got permission to get Madeline’s prints in clay and planned with the Pottery Place to make this set of charms I needed. They gifted these at Madeline’s Calling Hours. I got the treasure that I had missed because of lack of time. They did this for me… so we do this for others.

We make clay fingerprint molds for all of our best day ever kids that are on palliative care, or have left too soon. We work with Pottery Place to gift this amazing treasure in the form of charms to other parents. Just like the nurses did for Madeline and our family we do for them. It is an amazing blessing to gift a tangible imprint of a child’s life. We work with parents who have lost their child before they were due to join the world, those mamas and daddies deserve and are so grateful for the small imprint and token that their lovely lived and put their mark on this world. Imagine losing a lovely 20 weeks along… and having a keepsake necklace that you could touch and remember and feel your special child. Imagine your 7 year old who is no longer here, how his sister feels to be able to touch her charm long after her brother is gone, to feel his imprint when she is stressed. Tangible keepsakes are so important.

So often I receive packages from Albany Med for mamas and families whose lovely passed early, or for a teen who isn’t here to graduate. It is all the same for me. Every child is a child, every joy they bring is a joy. Every bit of pain that a child brings… before delivery, after and during those crazy teenage years is pain. Every single creation is amazing, special and made for the life they are plopped into. I love seeing a parent receive this keepsake… it is a treasure bigger than gold or the lottery. It is the physical imprint of their child to touch and see and remember.

We do many different and memory making experiences with many families with really different backgrounds and journeys. It is a blessing to share Madeline, her personality and spirit, her journey and her legacy. I am sometimes in awe of how we get to do these things, fill these niches. I never take for granted the gift that donors gift families that we help and ours, those donors believe and understand best days ever. Those donors help take care of families in times of need, in need of light and bright and easy and simple and kind. I hope that forever I can speak and share and spread Madeline… I hope I can bring the best days ever to forever, and that the world sees and knows the importance. I hope we can keep being brought to those we need, moving their mountains, creating their memories. I hope when I am 60 parents who lose their lovelies still get that tangible gift, that imprint of their child’s mark on the world. I hope when I am 60 (and beyond) this gift is still here and I get to deliver it.

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Dylan fighting Leukemia

 

I see what we do as what we have been shown to do. One of our best day ever kids, well many, but this one particular little guy is shaving his head for St Baldrick’s for Childhood Cancer Funding. He is a cancer survivor, he was diagnosed when he was a little little guy and now 5 years later… this 7 year old is going to do what he knows to change what he knows needs to change. Dylan is going to shave his hair to raise funds and awareness for what he KNOWS is a need… and he’s been bald before why doesn’t he just do it again to change this beast called Childhood Cancer. He is doing what he knows he needs too, what he has to because he was shown this need. It is what we do, if we listen. I firmly believe, or maybe I know is a better wording, that God shows us what to do by doing or providing for us. I wish more people heard.

I am so proud and honored to get to do what God sent for us, it is a pure and raw blessing. It is a special twist on this very hard life. To see and know a need, to fill it and to come home and sleep… it is fulfilling and somehow it coats the outside edges of the void inside me. It fills that space a tiny bit, but really it adds some soothers, or antacids to the edges of the void, the really raw parts of missing someone you love. The void exists but this gift is my tums in this, my soother of the rough stuff. I miss Madeline, but I share her, talk about her, think about her, talk to her, wish for her… and I know I bring her along. I see her in so many things… I know she has taught me and guided me. I want to ask you to think and focus, on the gifts God has given you… the blessings in your days and nights. I want you to think about what He has shown you to do, what he is guiding you to do, or be, or change… who knows. I know that doing those things will help fill your void with a little bit of tums when it is all raw and painful… it will help build you to the one He sees and knows.

Look at your blessings and support… think about how He uses that to send you in the right directions… Thank you for supporting and sharing and funding and believing in Best Days Ever…

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