My Heart is Breaking

I would like to thank Disney for helping us visit the island of denial, these last four days were nothing short of magical and something we will hold in our hearts forever. Connor has not been this happy since pre diagnosis and I am so thankful so many people worked so hard to give him the trip of a lifetime. Today I just realized how much I am going to miss him, his adorable voice, his belly laugh, his little hands and piercing blue eyes, I just can’t imagine a world without him, or how any of us can or will function without him, this just seems so incredibly cruel. Today I held in tears most of the day, as he is definitely deteriorating, it doesn’t take a brain scan to know that, and the sad thing is he doesn’t realize it, today he had a private breakfast with Goofy (and Connor and Claire’s first one on one date) as well as being “family of the day” at Chef Mickey, all he wanted to do was “walk” but he can’t walk and is so off balance that it is hard at this point to even assist him, this is a dramatic change from 4 weeks ago on my birthday when we were at clinic and he was very steady, and that is so scary, this monster inside of his head is growing way to fast and I really don’t know how many more memories we will get. Tuesday, I am talking to the social worker on our options for end of life care, but I do think we are past the point of having one adult with them, I am thinking we will need two from here on out. Just thinking about this makes me cry, Casey and I have had time to finally talk about this, over the last couple days, and while we don’t regret the decisions we made, ripping our family apart to travel to the best doctors, all in the name of cure, we are mad, in addition to sad, he never had a fighting chance and we just wish someone had a crystal ball and could have told us this last February. It just makes us so mad this innocent little boy who fills are hearts with joy and love to the point of exploding has to go through this, that any of us do. But we are so happy that Connor got this last trip and hopeful we can create a few more memories.

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And lastly, this hand, I can’t stop staring at it, it makes me so happy to see the magic band and Mickey bracelet he picked out replacing a hospital or clinic bracelet, but breaks my heart at the same time because it is so damn cute, I just find myself staring at it then tearing up, not sure I will ever take the magic band off him, he loves it so much.

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3 thoughts on “My Heart is Breaking

  1. It is so devastatingly unfair. You almost lost him when he was first born and now this. He will hold a part of your heart and being forever yet there will also be a piece missing forever.
    The ‘what ifs’ are an impossible rabbit hole. I know you will & have to go down, but when you come back up trust your choices based on what you knew then and how Connor was then.
    When I think about your days it feels like such a gift and nightmare all tangled together. So amazing to get these spectacular firsts, but each one is also a last. It’s so unfair for you four. It is not fair.

  2. Erin, thank you so much for sharing your magical trip to Disney on this blog. I’m glad to see Claire is loving her time with the characters. The pictures of Connor are both uplifting and heart-breaking, and I love every single one of them. He is such a strong and amazing little boy. Disney certainly knows how to throw a party and take care of the little ones. I’m so devastated that your journey has taken this path. Nobody deserves any of this. My heart breaks for you. Connor and Claire are so lucky to have you and Casey as their mom and dad. Please, if you ever need another pair of hands to hang with Connor and Claire, just let me know. I would so enjoy spending time with them again. Be safe coming home.

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