Imagine… 100 people in a room listening to this song as a slideshow shows pictures of children and families in the room… It flashes through with names and dates… birth and death. It is heart breaking and lifting… to be in that room. Each of the children shown in the slideshow, each candle that is lit and each name read is no longer here on this earthly journey. These families have gathered to remember their lovely… and share them with each of us and join together in our grief, fight, love, loss and familiarity. It is a reminder of all that is lost. The Rosie’s Love Memorial weekend is a sad/happy. The girls love it. They love all of the other kids there and the activities through the weekend. I love the feeling of surrounded. The feeling of tough comfort. We have all lost our lovely to childhood cancer. We have all gone in directions and lived life after that loss… but we are all connected.
This morning I kept Amelia home because she had a stomach bug. We have been home all day long, which is very unorthodox in the Musto House. So by this afternoon, with a ‘sick’ meme who was dancing and running and being crazy I put on Pandora Disney. All the good songs played. Frozen, Pocahontas… then Tangled ‘Now I see the light’… followed by this song. I went right back to that Memorial Weekend with the girls and all of those families. This song is so true… it talks about how Madeline will always be in my heart, no matter where we are. It talks about how the world will not understand this, how they will have their own ideas about how to do this right. Such smart words in a children’s movie song. It was an emotional dance party.
I see this now more than ever. I know that if people had a longer time to see how I dealt with Madeline’s death sentence they would have. I know that with more time they would have deemed my lack of fight and desire to ‘live’ as wrong. Not everyone, just those who don’t know what it was like to be in that spot. Believe me, if there was hope or I knew there could be a different outcome I would have fought. I knew though. I knew all along. Madeline knew too. Her 5 days were the exact number she was gifted from the start. She changed my heart, my brain and my soul. I know many have differences in how they would do this now. How they would mourn (outward appearance of grief) and grieve (deal and accept the loss)… but I have never been like anyone else. I reflect often on why I am the way that I am. I reflect often on why Matt is the way he is, why Amelia is, Lucy and of course Madeline. I guess, in my heart, I don’t care how others would do this if this were the position they were in. I know what I should, could, will, must do. In all of this I know so many can’t read my mourning… my outward appearance of grief. I am always grieving… thinking, hurting, struggling. You may see me smile, I may mean my smile and love what I am seeing (thinking, feeling, hearing) but my heart hurts always. When you see me smile (laugh, sing, move, run) you have no idea what is going on in my brain and heart. I love to see Amelia perform. I love to see Lucy run. It brings me a big rush of good stuff to see that. I love to laugh at funny things and feel my cheeks hurt- but under it my heart hurts. I don’t wish at all that anyone knew what this feels like, I don’t wish at all that people who don’t have a missing daughter try to compare. I know that it hurt for everyone who knew Madeline, who loved her… who lost her. I know that. I hate when people think that I do not know that. What a hurtful and deeply unkind thought. To think that I don’t know that your loss of my daughter didn’t hurt… I know it does. I think it would hurt more if I thought it didn’t. My grief is present, heavy and I see it. I know it is there. I have an amazing counsellor and take good care of my grief, body, mind, heart and soul. I take the best care of my daughters grief, mourning, happy, sad, hard, heavy, joyful, busy and real. I am glad that God gave me them and trusts me to be a huge influence in this journey.
I guess that song brought up a lot of the underneath feelings I have had lately. In the end of this, I don’t care what people think of me. I am listening, moving, breathing, running, parenting, laughing, crying and living in the only way I know how. The world will have judgments, ideas and opinions on how we live ALWAYS… if you know it is right for you do it anyway. I know what has helped me in grieving, I know what has helped many others… I see it all.the.time. I will write and share and talk and listen… I know that Madeline’s gift is in the message, in the journey, in my heart…