A new perspective on sinking and swimming

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in developmental disability, disability, IEP, special needs, special needs parenting and tagged , , , , . Bookmark the permalink.

6 Responses to A new perspective on sinking and swimming

  1. When my daughter was younger, I always replied to the question, “and how are YOU doing” with the stock phrases “Keeping my head above the water” and “surviving”.
    I am no longer as desperate and exhausted, I guess because I learned to float better or finally accepted the life vest everyone was offering me.
    I love the phrase “we are the ones we have been waiting for” and I love that it says, “WE”.

  2. Water is such a good metaphor for change and the difficulty of maintaining control, isn’t it? I am glad to hear that things shift; for a long time I felt really stuck (I suspect now that it was because we didn’t have a diagnosis for a long time, and that really threw me for a loop) although I am beginning to feel less so as time passes and we get a few answers and I get a few new skills.

    Glad you liked the prophesy. It’s so full of great nuggets to think about. We spent the whole weekend using it as our framework and it lent itself to some rich reflection.

  3. Debra says:

    Keep talking, keep talking, keep talking. And I’ll keep listening. Your words are powerful, for you and others. Sending love.

  4. Pingback: Embracing Special Needs Parenthood…same great taste, but juicier | Durga's Toolbox

  5. Pingback: One last message from Embracing Special Needs Parenthood…please take a trip with us « Embracing Special Needs Parenthood

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