… on to 34

I was driving home from work with Lucy in tow talking and sharing about our day. I felt full… full of love and energy and people. Today I turn 34, which is crazy since I remember not-so-long ago thinking that 34 was old and so far away. The funny thing about time and life is that they just move forward, no rewinding and no stopping. 34 always comes, if you make it that far.

I woke up with achy hips, but that is my normal. I felt pretty well rested since I forced myself to stop binge watching Nurse Jackie and go to bed. I looked in the mirror and looked pretty much the same as yesterday and last March (I think). I guess 34 isn’t so bad, I think I am always thankful to just get to and be a new age. I am sure 35 and 50 will rock… 63 will be as good as I make it. I like life, I like waking up and starting new days. I like challenging myself and seeing all the crazy awesome the God throws into all the parts of our lives. I am so glad to wake up when the bad stuff is all done and have it behind me, there is no rewind, remember? I am glad for every tomorrow I am gifted… and I will be all good when there are no more tomorrows. Life is good.

So… today on the way home… feeling full and loved and whole. I think grateful is the best way to describe the feeling today, grateful for it all. I am grateful for my net that scoops me up before I sink to deep, grateful for the shitty things that make me this very me, grateful for the gifts in every.single.day- for my ‘friends’ at school so excited to share my day. I am grateful for the friends and family that thought about me and wished me a smile and wonderful day… I am grateful for it all. I get to hang with my favorite guy that God plopped into my life just at the right moment… I am grateful for all the paths that got us both to these spots. I have a full and whole heart filled with gratitude.

In that car ride, yes it is taking me this long to get to the next part (so what I am a chatty story teller), I had a clear memory. My first birthday as a mom was the March the year after Madeline was born, she was about 10 months old. March 30, 2007 was sunny and warm just like today. I remember waking up to a day so different than today, a day I felt isolated and alone. I always loved being busy and full with friends and family on my Birthday. March 30, 2007 Matthew got up like normal and went to work, it was just Madeline and I, quiet and strange for me. I couldn’t expect more, that was life of being home and having a husband work. I didn’t have a lot of friends with kids back then, so it was up to Madeline and I to head out and have a day. As per normal we ate breakfast and watched Regis and Kelly… packed up the stroller and headed out for our morning walk. I remember clearly feeling isolated and sad that this was what birthdays were like now, quiet and lonely. We walked the same path we did daily for years, but this day we stopped in the park with a playground near us. I decided that this was the day for Madeline to swing.

I took Madeline out and secured Sparky’s leash around the swing set. I took the big blanket out to wrap and prop her up in the bucket swing. She had on the cutest coat and hat. I secured her in the swing and pushed. On a sunny day, that happened to be my birthday, Madeline had a ‘first’… and the love for swinging started then. I remember knowing what a big deal it was that she could swing and we could now enjoy the playground… I remember her loving it and our days now had a new activity. Little did I know all those ‘new’ activities would compile and she would grow so fast… until she didn’t.

I liked that I had that clear memory, right next to the feeling of gratitude. I am not in that place anymore, I am in a place that I am surrounded and loved and full… that my birthday feels special and not just ‘normal’. I loved my brain showing me Madeline at 10 months swinging and experiencing a first. I love that it is all in their, every memory, experience, smile… all are stored in this brain. I want to open up the drawers and remember more, but knowing it is there is enough for now. I am so glad to not be in the dark and lonely place I was back then, I think God pulled me out of isolation and got me surrounded so I could keep chuggin’ and livin’. He is good like that.

Thank you all. Birthdays are a big deal- all of them. We should all know that our own life and birth is super important and special. We are lucky when we get to accumulate many years and birthday’s… especially if we know we are loved just the way we are. Thank you…. I love each of you just as you are (unless you chew with your mouth open… jokin’). Thank you for loving me back, just the way I am. The greatest gift in life and death is being loved always and anyway.

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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…

Go be lovely…

In a world where loss is inevitable, pain can be so big, time can be so heavy… where the hole inside us can be so empty- God fills the hole up with bits of Him, bits of light, bits of whole and happy. This world can be full of big crappy BOOMS, boring moments, challenging choices and joyful experiences… I am proud and content with all of mine. I don’t always see it when I am in it, but this life and pile is pretty amazing and difficult.

After a few weeks of heavy and busy, I was looking forward to a Wine Tasting by my sister at my friend’s house. I made my guacamole and dolled up some store bought brownies (don’t judge) and we headed over for wine night. I pulled in and totally thought I was late, it wouldn’t be too strange for me to mix up the time. I got frantic and rushed in with my sister behind me… only to be greeted by “SURPRISE” and a bunch of awesome women waiting for us. I was pretty impressed that those buttheads kept it from me. I might have even called some out for not telling me, but then again I love a good surprise. So I hugged my people… all of them. I travelled around and chatted and drank wine and told funny stories and had to share how terrible my friends are at listening to any kind of representative. I should have warned her we moms are terrible listeners… especially the teachers, those ones are chatty. I got to combine many of the women in my life. I know for me it was a visual reminder of how God has filled up this hole in me. He uses people and experiences and connections and moments and lessons and hope to keep me chugging.

When I look back at that room full of my people, my builders, I see a very colorful quilt. Each of those women fill a part of me with something different… some I have known for years (my sister I have known since Mom brought her home) and others have just been stitched onto this quilt. They all bring something amazing, bright, powerful and necessary to this quilt that wraps around me. It surrounds me in happy and sad, it keeps me warm when life is bitter. Parts of my quilt couldn’t be there that night, some live far away, some just couldn’t be there, I still felt them. They have built me or wrapped me up when I was cold more than I can remember.

I went home, thankful for my Mr. Rick who chauffeured some of my quilt squares as well. I woke up and got to open far too many lovely and thoughtful gifts. I might have promised Amelia she could borrow a bracelet or purse… I will not share the coral shoes. BOOM. Though at this rate she will be my big foot size and want to borrow my ‘pop of color’ shoes. I loved reading the cards and words, I seriously have the best builders God could have put on Project Erin. These women are kind and whole and full… they build daughters that are kind and strong and good- just like mine. I am so glad He assigned them to Project Erin… she needs good builders.

go be lovely

I got some lovely accessories and thought- I NEED to buy a new shirt. I pulled a perfect black shirt out of the next bag… and it had some crazy good life advice on it. This tank will be a fave and I may need it in several styles. Go be lovely. What a better birthday wish? It’s like wearing my thoughts, go be lovely… try to do it well today, keep moving and put some lipstick on when you are blue. Go be lovely…

I had to laugh yesterday too… because I shared this photo my lovely builder had edited and framed of Madeline at her First Communion. I had never seen it before and I shared it, along with my big surprise birthday party… and I gave the impression that my birthday was yesterday. I am so glad to let you know, it’s actually March 30, so Facebook will remind you in a few days to bug me again… and I will be thankful for the reminder of the herd God has put in my life…