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Friday, March 6, 2015

Dear Hypotonia, Let's Stay Together

Dear Hypotonia,

We’ve been together for two years now.  My daughter, Ceci, introduced us.

After our first meeting, I obsessed over you.  I “Googled” you.  And once I learned all about you, I cried.  I cursed.  I questioned God.   By the time I was out of tears and words and prayers, I learned to accept you.

Together, we have met many people: doctors, therapists and friends.  And together, we have found an amazing support system that I never knew existed before you.

We have traveled to hospitals in search of diagnoses and to department stores to find shoes that would fit over braces.  And although we don’t have any concrete answers yet, Ceci does have a great pair of shoes because of you.

You have stayed up with me late at night, when worry and doubt have surrounded me.  As I cheered when Ceci took her very first steps, you were there too.  In your own way, you have managed to take some typical every day moments and make them extraordinary.

You have proven to me that a two year old can be the strongest person I know.  And in doing so, you taught me that strength is not something a person is born with.  Strength is born out of effort and sheer determination.

I never asked to be on this journey with you.  It would be easier to break-up, to call if off, to be done.  But I am not a quitter.  I am willing to make it work.

So as much as I would like to make this “break-up” official, I can’t.  It’s not you.  It’s me.  And I am okay with that.  Let's stay together.  Because each and every day, you remind me that no matter what obstacle our family faces, there is always hope.  And hope is an amazing gift.




  1. Well written, thought this!

  2. Ali you are such an inspiration to me, as a mom also on the hypotonia journey of hope! you have inspired me to also share my thoughts with others so thank you as its been an important step in this journey..This post was so beautiful and touching!
    Big huggs to you and Ceci!

    1. Thank you so much! I am so glad that you've been able to start sharing your story. Much love to you all on your journey!