05/12/2024
This is the grief of the ongoing-
This morning, my son with Down syndrome was doing just fine. He seemed happy. And then it came time to go to school. Heavy tears fell. His body became as heavy. He would not be moved.
I dropped the other kids off at school. I let him stay home. I’m not sure if I did the right thing, but I knew if he was forced to go to school it would be a terrible day for him, a terrible day for his teachers, a terrible day for me… waiting to hear.
I did something unlike me. On a Wednesday morning, I took an extra long shower. I crawled my heavy body back into bed while he colored at the kitchen table. And then I realized… Oh yes, I’ve been here before. This is grief re-visiting. This is the grief of the ongoing.
I hesitate to use the word grief when it comes to my feelings over my child with Down syndrome. I do not grieve his extra chromosome. I fully believe that without his extra chromosome, he would not be who he is. Subsequently, I wouldn’t be who I am today either.
This ongoing grief has to do with his level of vulnerability.
What happened at school yesterday? I wonder. It seemed like a good day. But did someone say something mean to him? I recounted the dinner conversation last night. When I ask him to talk about his day… He always deflects to his sister. Last night, he sighed and gave it a shot. He spoke in sentences we could not understand. I think he knows we cannot understand even though we try to be encouraging. Even though we try to pretend as the Therapists suggest. Does he know we are pretending?
I wonder, is it just an off day? Or is it something physical? I do not know because he cannot tell me.
What I grieve is that there is no fixing his vulnerability. I cannot make the world more accessible to him. I cannot make people accept of him. No amount of advantages I give him will cure the vulnerability of having an intellectual disability in a world that claims we are worthy only by what we can produce.
-&-I know that the grief I have is only because the love is so great. This life alongside our kids with disabilities is difficult & it is a gift. We grieve & we love.
So today, he was upstairs in his own world. Creating castles out of his treasures, castles I do not understand, yet castles, that heal him. I wiped my tears again. I got dressed, I worked, I moved forward.
Because although there is no cure to his vulnerability, although there is no cure to my own as his mom, there is also no love without vulnerability. And love he does not lack.
Today, I carried that grief that lives deep within me on my shoulders. Tomorrow, it will shrink down to its normal size. The grief never goes away because the extra layers will of vulnerability never go away -&- neither does the love.
This is the grief of the ongoing. This is the grief that comes from loving the most vulnerable.
& some days it’s difficult to move forward with.
& we move forward with it anyway.
Because it’s the love that carries us.
If this spoke to you, I believe my book, “The Gift of the Unexpected- Discovering Who You Were Meant to be When Life Goes Off Plan” will too
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