card carrying member

I have become one of the many sad-eyed parents walking the halls of this hospital. You know us by the Parent/Guardian sticker that grants us access to the places where our children rest in their hospital beds. We all look so much alike–sort of vacant, still, attempting to take up much less space than we do.

I’m finding myself looking longingly at healthy children, smiling sadly at pregnant women, giving looks of tragic solidarity to the other parents wearing the sticker.

I never imagined I would become a member of this club, this exclusive club of parents of children with cancer, this club to which no one wants a membership. None of us really even knows how to talk to one another, or so it seems thus far. I know that will change, that maybe with time, we’ll strike up conversations. I can’t help but find myself wondering, though, why my kid couldn’t have the same leukemia these other ones do, why he had to get the aggressive, super rare version that leaves his doctors just a little more solemn, that has us imagining a bit more of a nightmare in the coming months.

There’s a look people give me now. I think it’s an attempt to reflect my sadness, an attempt at sympathy. I appreciate the effort behind it. I do. But it makes me feel so hollow, so cold.

Today we learned from our head research doctor that he found the very mutation in our son’s DNA that is the marker for JMML. The diagnosis is unquestionable. As hard and stark as that is to hear, we know now why we’re doing what we’re doing. So we hold our breath as we search for a donor and just keep putting our hope in this boy who is our everything.

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13 Comments

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13 responses to “card carrying member

  1. I can’t even begin to imagine the pain you must be going through. I feel so sad for your family. There are so many people out here rooting for all of you. I wish I knew what to say to make it better…

  2. The world seems upside down. I hate that you have to wear that sticker.

  3. I’m a big freaking lurker, but wanted to say that I’ve been reading your blog since before BG arrived. KK and I will keep you and your family in our prayers (since that’s all we can do from here right now). I will be asking that you find community, support, love and strength in all the right places – that the outpouring of support in blogland reflects and outpouring of support in your daily lives.

  4. tbean

    There is this mind-numbing monotony to hospitals, in my experience. This droning sameness of awful, luke-warm cafeteria food, and over air-conditioned rooms, and florescent lighting, and endless, endless beeping of monitors and alarms.
    I hate that you are in that club. I wish you didn’t have to be there.

  5. CJ

    I want to say something to make it better, but no words are enough. You’re all in our thoughts and prayers.

  6. Shannon

    We wish we could do more for your family during this difficult time…however, one thing that we did do was finally get ourselves on the bone marrow registry (marrow.org). We hope that by becoming donors, more people will be matched, most importantly BG. In fact, I challenge everyone who reads this blog to do the same thing, together we can make a difference.

  7. Thank you for all the updates. Your family is on my mind constantly. I go to sleep thinking of you, wake up thinking of you, and find myself distracted by thoughts of you all day long. I HATE that you are going through this and hope the news of a donor being found comes sooner than you dare to dream.

  8. poppycat

    So much love coming your way. I, like RTS, find myself thinking of you throughout the day, sad and angry for you that you are facing this. You are in my thoughts and I am sending blessings your way several times a day.

  9. B

    Echoing the sentiment of the commenters above. There are no words, only silent, solemn reverence and support.

  10. chunkandmommy

    There are no words, but I so deperately want to give you a hug. You are constantly in my thoughts as I am lost in thought about how unfair life is. I cannot imagine how hollow and surreal this entire experience is…

  11. Couldn’t help but cry reading this. Wishing you guys weren’t facing this nightmare. We are sending strength and love and so so much support. Take it moment by moment….. xoxoxo

  12. Thank you for the update, for letting us come along with you and try to hold you guys up a bit. We’re all with you, from afar, and here as you need us.

  13. Bea

    I heard about your boy through LFCA. I am sorry you are all going through this, and I wish you all the strength you need.

    Bea

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