Tuesday, August 14, 2018


During dinners during the week we make sure that we ask our kids a couple of questions about their day or week that will elicit more than a yes/no response.  They have become so accustomed to this tradition that if a couple of minutes go by during Taco Tuesday or Meatless Monday one or more of them will excitedly announce they are going to answer first.  While in New York I came across a brand of napkins that advertised their napkins were "conversation starters", and after a quick glance at the examples they were placed excitedly into the cart.

During one of our most recent meals one of our children received "Swap Day...Who would you switch with and why?"  A sideways lip and squinted eye along with "hmmmmm" was hummed while the answer was being thought over when another child said
"I know who I wouldn't want to be....I wouldn't want to be Sonzee, because she is missing her CDKL5 and it is sad"
I cannot remember Sam nor my exact reaction, but I do recall saying that I agreed it is really sad.  To be honest the statement did not catch me off guard, nor did it make me upset.  In hindsight if anything is sadder than that purely innocently stated truth, it was the fact that Sonzee was sitting by the table with us and there was not a look of hurt or even awareness that this conversation was occurring mere inches from her.

Last night I attended an event with an amazing speaker who touched briefly on the subject of grief in regards to child loss and infertility.  She mentioned that you can have children and grieve that you do not have more, that you can grieve that you became a parent but maybe not following the path you had envisioned, that you can feel grateful for the family you do have while mourning the family you might have planned.  Her words so perfectly spoken, I am sure resonated with every person in the room despite their individual circumstance.  For me, there were multiple times during her discussion I pushed away the tears that filled by eyes. A few times because I did not realize I had buried a lot of the emotions from our entire "becoming parents" journey, other times because I have never really thought to grieve over the miscarriage we experienced after Sonzee, and mainly because of the grief I have yet to settle within my heart over our family not turning out at all how I dreamed.

I never expected nor wished to have a child with a profound disability and I certainly never wanted any of my children to experience parts of the childhood they have had to, nor inevitably will.  However, I am beyond grateful they are learning one of life's most valuable lessons, that life is not fair, and it is how they handle the situation that is important.  They are learning to cope with challenges that will surely enrich them and at the very least enhance how they grow.  What I cannot adequately express is how thankful I am for their openness, innocence, honesty, and vulnerability.  In addition, the gratitude I have towards the creators of these conversational napkins should not go unrecognized because sometimes you need a prompt to a safe place to let your true feelings be known.

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