Filled with love and orange.

I don’t think I have ever felt so profoundly sad as I have with the passing of Prince Liam the Brave. Now you have to understand, this was a kid I had never met. He didn’t know me, and I didn’t have the great fortune of knowing him. And what’s more, until the day of his service, I had never met his parents Gretchen and Larry, nor his little sister Ella. Well, I shouldn’t really say that. Gretchen and I had met, via email, almost 4 years back, after I read a blurb about her blog in a parenting magazine. I spent an evening reading her words from the beginning, and something about her raw honesty and open love for her son changed me forever. And I don’t say that lightly. We connected, and over these years I’ve watched her ferociously fight for her son. Fight tooth and nail, while all the while maintain the utmost, and I mean utmost, dignity for this extraordinary little boy who was allowed to live an extraordinarily normal life. This is the woman who sent ME a gift when Milan was born. I think it might be an inkling as to where Liam’s nature comes from.

My husband has cried five times in the 13 years I have known him. Once at the birth of each of our 3 children, once when we had a fight (we don’t fight, so that was why he cried) and, the evening we found out that Liam had passed. He went to the kitchen to make me a cup of tea, and the sniffs I could hear turned into great, giant wails. We clung to eachother and cried these encapsulating sobs for a child we had never met but who had touched us both so deeply. On Monday, when I sat in that church, surrounded by firemen and close on 750 other people, I could see that each and every one of us had been touched in such a significant way.

I think in Liam, Darian and I saw bits of our kids. Max’s love and sensitivity, Mia’s sweet smile and Milan’s constant why, why, why nature. And in Gretchen we saw this fearsome, lion hearted mother who was trying to roar her loudest roar at Cancer and whose love for her child is the most intense manifestation of true love that one could ever witness. Pure, raw, heartbreaking, heartwarming, amazing, love, love, love.

Maybe I thought that love was the strongest drug. Or was it hope? I guess I never thought that Liam would really die. How could God, or whomever is in charge of these things, allow a kid like this to die? Surely they could see how incredible he was? Couldn’t they appreciate how much he was adored, or at least recognize his amazing spirit and resilience? But no. Apparently Neuroblastoma doesn’t work like that. Apparently it doesn’t care.

But a whole lot of people do. In a bright white room, filled with love and orange, people gathered to celebrate Gretchen and Larry’s child. And cookies. I can’t not mention the tables laden with cookies of all shapes and sizes and colors. I was particularly fond of the green hearts with a dot of red jam that tasted like almonds and sweet smiles. Orange Chinese lanterns hung from the roof, strung amongst the sparkling chandeliers, against the backdrop of the water. And Ella, played with friends. Giggles as the bigger boys chased her. Hiding under a table in her pretty blue dress, an orange flower for her brother in her hair. I wonder if she’ll have phantom limb syndrome. She is missing a part of her. She is only 5 and that’s not fair. Not fair at all. So goddamn not fair.

And I looked at Gretchen, who never left the front of the room, a stream of well wishers providing a constant flow of hugs and tears. I looked around the room, at the faces, wounded, truly wounded by why they were here. Broken because of the reason they stood beneath the balls of paper orange, a wooden urn decorated with a red ceramic heart before them. And I knew, that each and every person there, had been touched in the same, inexplicable way that I had. And as I watched the tears pour from Gretchen’s face, an unending supply of searing grief, I made a promise to myself, and to Liam, that I would do whatever it takes to honor him, and LOVE LIKE LIAM. Today and every day. I’m wearing an orange cord on my wrist. It was in the program at his service with the words, “Please tie this orange bracelet on your wrist and wear it as a constant reminder of Liam’s love for life, and the perseverance and determination he showed while living it.”

So go forward with love. Don’t take it lightly. Live with fervor. Don’t hesitate to share and to feel. There was a little boy, whose story we are trying to tell, not only because it could help save other kids, but because he has taught us all the most valuable lessons in life, and in love.

Buy cookies – lots of them, at www.cookiesforkidscancer.org. Share Liam’s story with others. Get them to buy cookies. Hold a bake sale. Do something. Do anything. Tell someone you love them. And most of all, if anything has been learned from this all, LOVE LIKE LIAM.

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About baciamille

I'm Alexia, Alex, Lexi or Lex, depending on who you are. I'm mom to Mia, Maxim and Milan, wife to Darian, the co-creator and CEO known as Fancy Pants at Vuka Energy Drinks. I'm a marathon running, triathlete, musician and writer, wanna be rock star, all time actress, creative, vocal and sometimes just a little crahayzy. I think that's all. One day I plan to spend most of my time on a boat in the Carribean. Oh, and baciamille means a thousand kisses in Italian. I don’t know any other words in Italian.
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4 Responses to Filled with love and orange.

  1. Julie says:

    Lexi – Beautiful writing, feeling so much for all involved, especially his very brave and courageous parents. What an inspiration Liam and his family are. Thank you for sharing. Will be buying lots of cookies in the near future.

  2. Rebecca Wright says:

    Lexi,

    I never had the privilege of meeting Liam or his parents, but we are in the fight at Sloan. My precious godson was dxed with stage IV, negative histology, on 2/1/07. I’ve been buying cookies and encouraging others to do so from the get-go. And selling cookies and holding fundraisers and going to DC to lobby our Congressmen.

    What we CANNOT do is make this our cause du jour and then move on. This is a 24/7 thing for those of us in the fight, and we need everyone to HELP US!

  3. Pingback: Tweets that mention Filled with love and orange. « -- Topsy.com

  4. justcooknyc says:

    amazing post… thank you

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