Just Sissy

It was a dark cold afternoon in October of 2005 when Andy and I sat down with Chase to tell him about Larkin having Down syndrome. *yes I usually call him 15 but this post is different for no particular reason.

Chase was 10 and sat in a chair in our bedroom as we inhaled and delivered the news. My sweet sweet son who I protected and loved from the moment I knew I was pregnant with him ~ I had to change the color of his blue sky to the deep beautiful purple that was now ours.

Green eyes, mirrors to my own, filled with tears as he held his sister tight and he said to me “why couldn’t it have been me and not her.”

Repeating his words above always makes me cry.

Chase has asked a lot of questions over the years and adjusted beautifully to our new family dynamic and learned how beautiful purple skies are. He loves his sister fiercely and with an ease that I believe comes from the fact that I have worked very hard to keep him from living in her shadow. He knows that he needs to have his own life, education, family, etc … whatever/wherever his life path takes him and if caring for his sister falls into that plan, that would be wonderful, BUT if it doesn’t that is wonderful too as he has to be free to live without the weight of that responsibility.

Chase has grown through the journey with us and he is a better human being because he is Larkin’s brother.

Today I was loading the kids into the truck to go pick up Chase at school and I had a realization that has spun around my head since.

I put the twins in their car seats and got them settled and went back into the house to carry Larkin out. Loading everyone in takes a bit of navigation but I have it down to a science depending on who is close at hand and not grumpy. As I lifted Larkin up into her car seat I could hear B and E laughing with excitement and I watched as E’s face lit up into a giant cheesy grin as she tried to say “sissy.” Larkin was smiling at their greeting and that is when it hit me.

My girls will always think of Larkin as their “Sissy” and she will never be anything else but.

Over the coming years they will ask me questions just like Chase has and I will answer them honestly and with conviction like every other question about life they will throw my way. They will eventually know their sister needs extra time, learns differently, takes lots of medication.  They have a lot of time to learn about Down syndrome, Epilepsy, brain damage ~ but (and this is one big fat giant BUT) they will first and foremost know that Sissy is beautiful, amazing, loves music, animal crackers, swimming, gymnastics, and playing in the park. B&E will be different as their lives take shape because they will FIRST know the beauty of their sister and their sky will have always been purple.

Like Chase, B&E will also know that their lives are their own to lead. Because they are twins, I have been more deliberate in treating them as individuals and expecting others to do the same. Their futures are their own to write with our guidance and love.

I smile because the twins will have a unique view of this imperfect world we live in. Chase adapted just as we did but the girls….. They will never have had to unlock the secret to unconditional love. They were born into it.

We should all be so lucky.

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6 Responses to Just Sissy

  1. Terry says:


    Once again you have written with all of your heart and soul, and any reader would have to know how much you adore all of your family… Enjoy those purple skies..

  2. Laura says:

    I can always count that when I come here to read I leave inspired and seeing the beauty in this world. Wonderfully written.

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  4. tara says:

    I love reading what you write. Sometimes I cry and the lump in my throat remains for days and sometimes I smile for so long I forget that I am still smiling. Your writing touches my heart and hits home in so many ways. I appreciate your knowledge and insight. I appreciate your strength.

  5. Amy says:

    This is stunning, in so many ways. The idea, the reality, the way it is crafted … just lovely and heartbreaking in all the right ways.

  6. Heather says:

    Came over to see your blog header from your comment on Bethany’s fb post. I can’t think of a better name. Love it. Almost cried just reading it. You’ve got a new follower in me! 🙂

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