What Must Be Said

Here is the thing that no parent of a child with a disability really wants to admit: the birthdays, they can break your heart.

We don’t say this part out loud because it’s not what people want to hear from us.  We have learned how to save you from feeling sorry for us. We don’t want you to feel badly.  We have been doing this for a year, two…a decade or more. We know the rigmarole by now.

We say:  “My son is 10 today” (if we say it at all)  and every kind person around us offers their best wishes. They are being kind, they can’t know.  
How can we, right then, admit that there is sadness? That there is fear that cuts the cake, searing our worries with every slice?

We know it sounds bad. And not the friends, not even the other parents, will understand.
We know you will not grasp, if we say it, that we love our child in his entirety, disability and all.  But there is an undercurrent of uncertainty–the undertow of tomorrow is menacing, freezing.
And the truth is that birthdays are a tangible reminder of how “One day…” can quickly turn in to “Now”. And this scares us.

Ask us how we will celebrate and know if we don’t say these things, you can hear if you listen closely.

Lean in.  Listen.

Here’s what we would tell you, if we thought we could.  Or should.

His birthday is a reminder of where we should be and where we aren’t.
There are presents, but he will not open them.
There is cake, but he will not eat it.
There is singing, but he will cover his ears.
There is a child that grows into a man, before my eyes. (How will I care for a man?  Who will shave his chin and make him sandwiches? )
There is the pressure (of the things I have not done that could make him better, of what happens when I am gone) weighing on my chest when I open my mouth to blow out the candles he can not extinguish.
I blow and blow and only then does he laugh.  I am silly, hair a mess.  I make him smile and that makes me smile—this is the only gift I get today.  This little sliver of his happiness.

But then, after. There is me, in the dark, the smoke from 10 birthday candles drifting past his eyes, my eyes.
Into the air of a night he will not know to be any different than the one before it.

You can ask me if we will do something special to honor his birthday and I will answer you with details.  The answer is in the details.
But just know that it is different, in the way he is different.
That I am leaving more unsaid than I am saying.

Say, “Happy Birthday to your son!”
And I will say “Thank You.”
And if I seem like I have nothing more to say, because my words won’t be enough…

Try to understand.


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