Coping with DIPG- How are you?

How are you?  

This is a loaded question.  We will most likely answer with "fine", "good" or "okay".  The truth is we are none of these but it is a reflex to answer this way.  

We are tired from not sleeping.  We are nervous about upcoming tests.  We are exhausted from crying.  We are stressed over bills and insurance.  We are anxious about every cough or fall Ava makes.  We are afraid that symptoms will re-appear at any time. We are scared of the future.    

We can't show these emotions to Ava so we hide them from you too.  Not on purpose but because it is just easier than the truth.

Coping with this illness is tough, to say the least.  
We appreciate you asking and when we say "fine", "good" or "okay" you'll know what those words really mean. 

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3 Responses to “Coping with DIPG- How are you?”
  1. Danielle says:


    This breaks my heart to read, but I admire your honesty. You are in my thoughts and prayers every day and I sincerely pray for the best for your family. You are loved by so many people and I hope that you know that you can lean on us whenever you need to!

  2. micheflet says:

    Sometimes "fine" can just mean at the one particular moment. Maybe you're just okay, or you're good, for this time that you happened to be asked, because you are not in the doctors office or hospital waiting to hear about some test, or procedure, and for that one present moment, you can be a normal person, except when someone asks you how you are doing, cause then that reminds you that your really aren't "fine".

    But the reality is, no one really expects you to be okay, considering what you are going through. And we hate to see how there is little we can do to help. So when we ask how you are, we know you are not fine, and we aren't really asking if you are. We too are hiding our true feelings, cause asking you how you are, really is saying 'I'm very sad about what is happening, I wish I could do something to help take your pain away. I care about you and I am here for you in any way you need me.'

  3. Cynthia says:

    Thank you Aunt Michelle. I didn't think of it that way.

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