Sunday, November 4, 2012

I found this bag of pancakes deep in our freezer, it must have been from April before he was diagnosed. Oliver loved pancakes so much that we use to make huge batches like this to freeze. A few mornings a week we'd warm some up for him. We'd top them with fruit, sometimes we'd make smiley faces out of them with bananas and whipped cream. He'd devour them and always ask for more. They took exactly 22 seconds to heat in the microwave. 25 seconds and they'd get too tough and chewy, 20 seconds and they were still too cold.

This stupid bag of pancakes brought me to tears, it made me want to crawl into bed and stay there forever. I can be having a "normal" day and something like this reminds me that my life is a nightmare.

Oliver has been very tired recently, he sleeps on and off all day and sleeps most of the night. His breathing is strange quite often now, it's either rattly, shallow, too fast, too slow and he has periods of high pitched stidor breathing. It still worries us, but now it's his new normal. A horrible new normal.

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1 comment:

  1. Katie my heart just breaks for you. You are facing a situation that NO parent should ever have to face. It's horrible, it's cruel and so unfair. I can't imagine how hard it must be to get through each day, and how difficult it must be to document your story. I'm a complete stranger to you but your family and your story have captured my heart forever. Oliver is a beautiful little boy (that smile!!) and he is so very fortunate to have you and Chris as his parents. I know you have said that you don't feel strong - but your are beyond strong and you should never doubt that - even on your worst days when you don't want to get out of bed. Your love for your little boy is the definition of strength. Your story has forever changed my perspective on life and on how I am as a parent. For that I thank you, and Ollie. As horrible of a reason it is that you have this blog, know that you and Chris and Ollie are having a positive impact in others lives.

    I wanted to share another story with you. You may already be aware of it. But it's a blog from another "Dragon Mom". Different disease, same horrible and devastating journey. Not sure if it helps or hurts worse to read it. But she reminds me of you in her passion and her love for her child, and her beautiful way of writing that captures her raw emotions.

    You are in my thoughts and prayers everyday and always will be.