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Thursday, December 4, 2014

Our Hypotonia Journey: 16 Days of Awareness - A Letter to Laila


Happy 7th year of life! For seven years you have graced this world with your pleasant personality, silly antics, and kind heart. You have danced and played and laughed and learned and smiled and dreamed for 2,556 days and nights.  And you have had my heart from the very start.

In these seven years together, I have learned so much about you.  I know your favorite color, your favorite food, and your least favorite shows.  I know that you like Halloween and love Christmas, and that you'd rather eat ice cream over cake.  I know you like dresses, and you hate jeans.

And even though you remind me so much of myself as a child, and even though I know you so very well, I will never know what it is like to be the sibling of a child with special needs.

I will never know what it feels like to spend my childhood days waiting in yet another doctor's office or sitting quietly during a therapy session. I cannot imagine the worry and despair and resentment you sometimes feel when you learn of another hospital stay. And yet, I watch you grow into a considerate and compassionate individual.

I will never know the confusion that runs through your mind or the jealousy that cries in your heart when you see a child your sister's age doing things she cannot do.  I do not know what it is like to have a sibling who cannot run for hours on end or climb up and down the playground stairs.  I cannot fathom the sadness you felt when you looked at me and said, "I wish my sister could play with me like other kids can."   And yet, I watch you grow into a patient and accepting individual.

I cannot begin to comprehend the amount of responsibility you probably feel sometimes -- to protect your sister from the cruelties of the world, to help her, to keep her safe, to make her happy.  And yet, I watch you grow into a nurturing and strong individual.

And despite all of these things I do not know, one thing I am certain of is that the world is a little bit better because you are in it.


  1. You should put a warning on these posts; "Tearjerker ahead". Ceci got all the luck, to have YOU as her mom and LAILA as her big sister. I think Lai will be forever changed for the good because of all the experiences you mentioned above. I can see her pursuing nursing, or therapy, or even a Dr! It's neat to see how experiences so young can affect our outcome in adult life. <3

    1. Nicole, I promise I will try harder to incorporate "have your tissues ready" warnings :) lol. We love you.