It's not that there are more hard moments than easy ones.
Or more sad moments than happy.
Our lives have more laughter than tears.
More beauty.
And I still see the perfect and the joy and the progress and the gains even when there's a struggle.
I do.
I think that's why, even when it makes me sad, I can talk about the lows.
I'm not mocking our challenges when I do.
I'm trying to call our day as I see it.
Trying to be rational and honest about our life.
To be honest about things like getting frustrated.
So very, very frustrated.
Especially on days like today when I watch him struggle and struggle and struggle.
When all he wants to do is have fun.
And he struggles.
Days like today when I'm irritated down to my very core because life should NOT be this hard.
It should NOT be so hard for him to be surrounded by close family who love him.
I should NOT have to make decisions that keep him safe but hurt his heart.
Decisions like choosing to remove him from the party, from the company of the people he adores so he can have quiet time.
Because he's melting down.
Because their noises and smells and movements and laughter, and even the excitement he feels because of his very love for them, are all part of his struggle.
Because he doesn't know how to be a part of this group.
He KNOWS they love him
He knows he belongs to them.
He doesn't know how to ever... Completely... Be... WITH them.
So tonight I am frustrated.
Tonight every ounce of my heart and soul wants to run away with him to a quiet place where we can live in a bubble.
Where, I rationalize, he can live as he would have a hundred years ago; without football on the tv and Christmas music playing and timers dinging and phones ringing.
Where there are no visitors.
Where there is silence.
Silence where the unchartable, hidden bubble in his brain that his tests label "nonverbal IQ" can take center stage and he can sit and create and build and plan.
Where everything that overloads him can fade away.
Where there are no demands except to be his brilliant self.
The way he is in the quiet of our rooms, when it's just us.
But I am neither able to let him live in that fantasy bubble nor am I able to rationalize allowing him to be so entirely removed from the world.
Hidden away where there is no therapy or assistance or support.
No family cushion to lean against. And we desperately need a cushion.
So we compromise.
And days like today: gloriously brutal days where he is surrounded by perfect love and yet tortured by his challenges, are the best kind of compromise I can find.
So I let him enjoy himself as best he could.
And I saw the beauty in it.
And I watched him fall apart.
And I felt the sorrow of it.
And then we spent an eternity under blue lights in a darkened room.
And there was beauty there.
Squishing glitter slime. Pacing. Rocking.
And there was frustration.
Because we were necessarily relegated to the "corner" again because he was too much for everyone else.
And everyone else was too much for him.
But whatever the struggles, I am grateful for the celebrations we have.
I am grateful for the family who loves him.
Who watch him rock and listen to him scream... and hurt for him.
And wait for him to reset and rejoin them.
And love him even more for the hurting and the waiting.
And I am thankful.
So very thankful.
And yet, here in the dark aftermath of the holiday, I am still visualizing that cabin.
Imagining the escape.
And still, always, purposefully, staying put.
Always.
<3
#SpectrumMom
Or more sad moments than happy.
Our lives have more laughter than tears.
More beauty.
And I still see the perfect and the joy and the progress and the gains even when there's a struggle.
I do.
I think that's why, even when it makes me sad, I can talk about the lows.
I'm not mocking our challenges when I do.
I'm trying to call our day as I see it.
Trying to be rational and honest about our life.
To be honest about things like getting frustrated.
So very, very frustrated.
Especially on days like today when I watch him struggle and struggle and struggle.
When all he wants to do is have fun.
And he struggles.
Days like today when I'm irritated down to my very core because life should NOT be this hard.
It should NOT be so hard for him to be surrounded by close family who love him.
I should NOT have to make decisions that keep him safe but hurt his heart.
Decisions like choosing to remove him from the party, from the company of the people he adores so he can have quiet time.
Because he's melting down.
Because their noises and smells and movements and laughter, and even the excitement he feels because of his very love for them, are all part of his struggle.
Because he doesn't know how to be a part of this group.
He KNOWS they love him
He knows he belongs to them.
He doesn't know how to ever... Completely... Be... WITH them.
So tonight I am frustrated.
Tonight every ounce of my heart and soul wants to run away with him to a quiet place where we can live in a bubble.
Where, I rationalize, he can live as he would have a hundred years ago; without football on the tv and Christmas music playing and timers dinging and phones ringing.
Where there are no visitors.
Where there is silence.
Silence where the unchartable, hidden bubble in his brain that his tests label "nonverbal IQ" can take center stage and he can sit and create and build and plan.
Where everything that overloads him can fade away.
Where there are no demands except to be his brilliant self.
The way he is in the quiet of our rooms, when it's just us.
But I am neither able to let him live in that fantasy bubble nor am I able to rationalize allowing him to be so entirely removed from the world.
Hidden away where there is no therapy or assistance or support.
No family cushion to lean against. And we desperately need a cushion.
So we compromise.
And days like today: gloriously brutal days where he is surrounded by perfect love and yet tortured by his challenges, are the best kind of compromise I can find.
So I let him enjoy himself as best he could.
And I saw the beauty in it.
And I watched him fall apart.
And I felt the sorrow of it.
And then we spent an eternity under blue lights in a darkened room.
And there was beauty there.
Squishing glitter slime. Pacing. Rocking.
And there was frustration.
Because we were necessarily relegated to the "corner" again because he was too much for everyone else.
And everyone else was too much for him.
But whatever the struggles, I am grateful for the celebrations we have.
I am grateful for the family who loves him.
Who watch him rock and listen to him scream... and hurt for him.
And wait for him to reset and rejoin them.
And love him even more for the hurting and the waiting.
And I am thankful.
So very thankful.
And yet, here in the dark aftermath of the holiday, I am still visualizing that cabin.
Imagining the escape.
And still, always, purposefully, staying put.
Always.
<3
#SpectrumMom
 |
Pic of my Boy hiding from the world.
With his cousin, unprompted, unschooled. Beautifully, successfully, trying to bring him back to us. |
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