A Mother’s Wisdom


Rachel, a #raremom and co-founder of ANE International,  tells us about living with the aftermath of Acute Necrotizing Encephalopathy from her perspective. Her words are very powerful and extremely beautiful.


I can recall the day, we were told our child had brain injury. We had no clue what that actually meant. There’s no course or workshop for parents dealing with their children’s new abilities. There’s nothing that anyone in any world or in any experience could do to provide this information. I remember feeling like being punched when our rehabilitation social worker told us that our child would never be the same, ever, no matter what we did.



Do you know why?
The brain is still an alien part of our body that is not understood by science nor is given enough importance in our current modern culture.

Do you know what’s worse?
The fact that no one could tell you or prepare you for anything that’s coming up. Your coping skills, networking skills, patience, faith and much much more will all be put to the test.

Do you know what’s amazing?
You will have never be more inspired in your life, you will look back at these challenges at different times in your life and still wonder, how did we manage through this?

You will smile at strangers when they ask you probing questions even when you feel like crying and telling them that they are being insensitive.

You will throw that party even if your child with brain injury was up every 2 hours in the night for the last 4 days.

You will work and/or keep your home running no matter what else is going on.

You will carve out time for your other children and make sure that they have a “balanced” life and feel guilty at every step.

You will go out to your girlfriends outings because you need it more than sleep to stay human.

You will support your child in their Jekyll and Hyde moments of brain injury and wonder how you pull that off.

You will be inspired by your child and your child will be inspired by you.

You will not wish this on anyone but you will not want to have missed all the experiences.


#ANEandUs  #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #InfectionInducedAcuteEncephalopathy  #rarespecialpowers 


Find out more details at: http://aneinternational.org/ane/awareness-day/


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One thought on “A Mother’s Wisdom

  1. Just want to send you some well deserved praises for you and your family.
    Being a parent is hard enough and throwing in a challenging element in the mix is not what anyone wants.

    Going through this shows you what your made of and reveals those who would stand by your side because they want to not cause they hafto.

    The hard work you have put in really show in Arden’s beautiful smile and positive attitude.

    You and Glen are a great team. Keep it up.

    Best wishes from Marty and Vanessa

    Liked by 1 person

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