To all the mamas and papas and in between who parent with love and adoration children who have been given a disability (visible or invisible), I see you and you are not alone, even though the world would often have it be so.

I used to be better at rest, I have wondered where the path moved and altered, I have paid many helpers, licensed folxs, healers, breath work workers to find, analyze, soothe, reconnect with that part of me that is so very tired and so very afraid to lay down.

Lately it has made so much sense to me I couldn’t help but giggle.  

It was never my fault to begin with, 

Rest as elusive

I used to be better at resting.

I tried to analyze when the change came.

Of course there has been children, the before and the after,

It has been worth it to examine gender and expectations and to

Have those uncomfortable, tear stained conversations,

The ones less about wrong or right,

And much more about being seen.

I can only figure this, and I wish I knew it sooner before I paid

All those therapists, coaches and breath work workers,

I parent children with disabilities.

My breath is always held,

There really isn’t a system to catch even if I could give it some release.

Oh sure we have paid for some of it (thank god and what about those 

That cannot)

There’s been interventions and advocates and new schools and 

Endless IEP meetings and revisions.

Nothing prepares you for a call that your 6 year little boy was put

In a restraint, a grown man holding a boney body down, all elbows and knees,

The body you grew and nursed and tended to,

Somewhere between a giggle in a hallway and a defiant stance 

He had hands laid upon him.

No one tells you what becomes of your breath and how the world becomes

All sorts of dangerous.

Empathy and regret for all the times you didn’t see and now you get a glimpse

And it breaks your goddamn heart.

For what are you meant to do?

Another mama, sweet tendered soul, held my hand and said

All we want is to believe there is a place for our children,

Sometimes the fight gets you weary.

It’s a lot of work to build chairs and tables and hope it is enough 

To Withstand the blows and buffers of ignorance and hatred.


What a word,

What a whirl that occurs in my heart, my lower stomach,

Again and again a routine feels threatened, a way of being


It’s almost funny to ask for so little but it seems like so much.

I would love to rest,

I would love to unclench this knot in my throat and below the breastbone.

I’m coming to terms that may never be so.

Make no mistake, I will teach and show my children that this world is a lovely place,

There are dreams and love to make and people to know and places and corners to


And the playing field is not evened, it has been a shit ton harder to live and survive and thrive

When this is your reality.

It costs more in every sense of the word.

We pay a lot of prices to exist in this world.

I’m a little weepy today, it seems to have caught up with me,

Rooted at the spot, 

Spindled and twirling around,

There are times I face it full on and I feel radiant in my wisdom, regal 

And known to those that know.

And there are times when my knees hit the floor, reality sinks to 

A cavern of acceptance, and I am left with wishes and hopes,

It’s enough to break your heart over and over again,

I often think what other choice do I have?

I love, I get to love, I am loved,

I get to be loved,

How much more could we have done if instead the wind 

Had been at our backs?