Hahka Ahppa

—Anna-Marie—

Lately I’ve been feeling anxiety trying to creep its way back into my life. 

I have a true desire to stay in this present moment, so I don’t miss the gift of right now.  And although it may seem contradictory, I’m actually not much of a worrier. There are too many actual things in my life that are challenges and will continue to be challenging—I don’t have mental margin to make up hypothetical things to worry about.

And yet.
There they are. Those “inevitable” outcomes of the future. 
Anxieties I think I’ve dealt with, but I still know they’re there, pushed way down inside me… because I don’t want to deal with them.
I know they’re there and so many of them seem so probable.
So instead of worrying about them, I let them sit there in the crevices of my mind and heart and pretend they aren’t there.

__________________

I posted a video on social media back in February.

It was of a special moment with Tobin. We were making a Valentine box together, and this year he had been such a big part of the process. He’s beginning to understand holidays and really seemed to love the project. At the time he was really into mustaches so we created a Valentine box around the theme. It was so fun.

A few months later, I ran into a close friend I hadn’t seen in a while, and she acknowledged the video: “I saw your video with Tobin! Making a Valentine box! I think it’s so cool.” 

I’m thinking she’s talking about the whole mustache theme and how stinkin’ cute Tobin is, so I start to go into the experience: how much he loves mustaches, how I was trying to think of something where he could do the majority of the work, how he kept pulling off the mustache on the picture and putting it on his face! I started cracking up telling her how Tobin’s teacher told me about this moment when she heard Tobin laughing and had turned around to see what was going on and saw that everyone in class had put on their fake mustaches—and that Tobin thought it was hilarious.

I’m laughing and my friend is laughing and she says, “I mean, I think it’s so cool you guys made a Valentine box together because I remember you telling me how much you loved doing those things with Knox.” 

She paused and I tried to remember what she was talking about. 

“It was during those first months following his autism diagnosis… when you were processing everything. You were grieving things you loved doing with Knox that you didn’t think you would do with Tobin—talent shows, sports, parties… Valentine boxes. You were saying how much fun you and Knox had making Valentine boxes and how you would miss doing all of those things.”

The distant memory began to resurface.

And I remembered.
I remembered the tears, the blubbering, “I’ll never have those experiences with Tobin.” 

I was bleeding out and crying out all of these expectations about expectations.

I remembered standing with her with all my sinking feelings.
All the rising anxieties about what parenting Tobin would be like when he was ten years old—when he was only three. 

And here he is now. Ten years old and we had a blast making a Tobin-tailored Valentine box.

And it hadn’t been his first one either.
We’ve been making Valentine boxes together since he was in kindergarten. Each one specific to something he’s interested in. Each one with a little more involvement with Tobin. It takes a little more effort and planning than it did with Knox, my oldest. Things get a little crazier than they did with Knox. I have to do more guesswork than I did with Knox. 

But ultimately, I’ve been able to make Valentine boxes with Tobin every single year of his elementary school experience, and we’ll make our last one this upcoming February.

I’d forgotten the significance of these boxes.
I’d forgotten the way each box chipped away at those “inevitable” anxieties I had created all those years ago.

I wish I could tell younger me that everything will be all right. That Tobin and I will end up growing together. That we’ll make Valentine boxes and go trick-or-treating together. That he’ll have this computer that enables him to communicate what he is thinking! And that one day he’ll take that computer, sit on Santa’s lap and ask Santa for “green bike black tires.”  I wish I could show her the Tobin, the Anna-Marie in this moment

so she would stop mourning things that didn’t even happen 
or didn’t happen the way she thought, the way she “just knew” they would.
__________________

Each night, when I tuck Tobin into bed, we say a prayer together. 

In the beginning, I’d kiss him and say a long prayer, full of specifics, like Knox and I do together. But after a while, I realized those were really my prayers, not his. He couldn’t join in with his own thoughts, like Knox. He just laid there while I took five minutes stuffing a whole bunch of words between “God” and “Amen.”

So I came up with something different. 

I remembered a quote by the author Anne Lamott: “I do not know much about God and prayer, but I have come to believe over the last twenty-five years, that there’s something to be said about keeping prayer simple. Help, Thanks, Wow.”

I decided to make our prayer more concise, something Tobin could memorize and make his own, something that took all those words and boiled them down to their core.

Since that time, every night we say the same prayer:

God,
I love you.
Help me.
Thank you.
Amen.

We’ve done this for several years now and about a year ago, Tobin began repeating after me:

Me: God
Tobin: Kah

Me: I love you.
Tobin: Hahpah

Me: Help me.
Tobin: Hahpah

Me: Thank you.
Tobin: Hahka

Me: Amen
Tobin: Appah

The thing is, Tobin always knows what he wants to say, but his speech apraxia gets in the way of his verbal communication. His brain has trouble creating a pathway from his thoughts to movements required to speak.

So for him to verbalize this prayer is a pretty big deal.

We did this back and forth for a while, and then I started just asking him to say his prayers. I point to my mouth and then to his mouth and he dives right in:

Kah
Hahpah
Hahpah
Hahka
Appah

Throughout his prayer, he will sometimes look to see if I’m going to say something. I’ll just touch his mouth and then he’ll say the next word or the word he just said, while looking at me for help. I tell him the missing word and he repeats it.

But sometimes,
more times than not,
he does this prayer all by himself:

Kah
     God,
Hahpah
      I love you
Hahpah
     Help me.
Hahka
    Thank you
Appah.
     Amen.

…but he continues…

Hahka
     Thank you.
Appah
     Amen.
Hahka
     Thank you.
Appah
     Amen.

He says these last two words over and over: Thank you! Amen! Thank you! Amen! Thank you! Amen!

Sometimes softly, but sometimes with much gusto.
Sometimes at the end of the prayer, but sometimes he starts things off getting straight to the point:

Hahka!
     Thank you!
Appah!
     Amen!
Hahka!
     Thank you!
Appah!
     Amen!
Hahka!
     Thank you!
Appah!
    Amen!

____________________

After listening to Tobin’s emphatic ending to his nightly prayer, I was curious on the exact meaning and use of the word “Amen,” and I learned that it actually has a few different meanings, or emphases, and is used in different ways.

But my favorite definition is the Greek translation: “so be it.”

An expression of acceptance.

Hahka
     Thank you
Appah
     So be it.

____________________

About a year or so ago, I started practicing gratitude before I go to sleep.

I have a tendency to overthink every conversation or upcoming event or a random moment in time fifteen years ago or seventeen years ago or two years ago when I said the wrong thing and I wonder if they still remember and think I’m an idiot. Or if I hurt their feelings. Or if they know how much I love them.

So I started calming my brain by practicing gratitude.

The moment my head hits the pillow, I start thinking of all the specific things I’m grateful for. I get as specific as I can. Often focusing on one image in my head of something that fills heart and I’ll get as clear as I can with the image. I breathe and listen to my breath and when I think of something that makes me smile, I allow the smile to come as I close my eyes and fall asleep.

That may sound weird or fake or cheesy or whatever, but it’s just truth.

I do it because it keeps me focused and because I have found the best way to keep away the dark is to focus on all there is to be thankful for.

And it helps me sleep.

It’s really changed things for me. I have more peace and perspective—and presence.
Because when I’m focused on things I’m grateful for, I’m looking around me. In the now.

Hahka.

____________________

I’ve heard it said that we suffer in life when we cling to a certain idea of how we think something should be. And as long as our focus is on wishing things were different—on anger, disappointment, resentment, grief that things aren’t what we think or thought they should be—we will continue to suffer. 

We’ll continue to be blind to the blessing that lies beneath our unmet expectations.

That it’s when we let go, when we truly surrender to reality,
we can begin to see the good stuff. 

It’s in acceptance we truly live.

Appah.

____________________

We’re wrapping up the season of gratitude.
When we can reflect on everything in our lives to be thankful for.

Sometimes that comes easy.
But sometimes all those “Blessed” hashtags and signs and memes can create a big eyeroll in our spirits.

Sometimes when this time of year comes around, gratitude can be difficult to muster because we’re weighed down by the heavy.

But I’ve been thinking about that Valentine box.

Thinking about
how I had this one picture in my head of how the project would go.
And all I could see were all the ways it wouldn’t be what I’d dreamed it could be.

Yet Valentine’s Day came around and there we were, sitting at the same dining room table I sat with Knox, having a fantastic time
celebrating the holiday,
celebrating how far the two of us have come.

It just looked a little different… than what I had expected.

I’ve found that looking back with perspective helps me look around with gratitude, which enables me to look to the future with trust.
With a little more peace.


These days, I’ve been finding myself whispering Tobin’s words over and over.

When I feel my heart race, wrapped up what ifs or cynicism.
When I’m in the middle of a hard moment, or struggling to get out of a thought that’s weighing me down.

Or even when I find myself in the midst of extraordinary happiness.

I pause.
I breathe.
And I say the words my forever teacher has taught me:

Hahka
for what was.

Hahka
for what is.

Hahka
for what will be.

Appah