Tag - grief

1
Words Like Nets
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Count Your Blessings
3
Granite Days
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Contracts
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The River
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Slow Motion
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It’s So Loud Out There
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A Magnificent Boy

Words Like Nets

This. This at the end of a long, tiring day. This, when you simply want to put a period on it, as in, THE DAY IS DONE.

This, when the goal is to slide into the evening with your thoughts and a glass of wine, your children at last asleep. Let’s be honest, looking forward to these moments is what keeps you going some days.

So when one of your children refuses to cooperate and instead keeps getting out of bed after lights out and you see no discernible reason other than he quite possibly does not want you to have alone time, you will sigh heavily and say “Alright, then. Come here. Sit on the couch with me.”

The truth is you are just too tired to keep walking him back to bed.

You ask him, of course you do: “John, what is it? Why can’t you sleep?” You ask him, knowing that it’s futile, knowing that answering requires too much and tools he does not have. And then you spot your laptop. You open a blank word doc and you type:

John, why are you sad? Because… ?

You don’t expect an answer, you don’t expect much, which is why when he leans forward you still don’t realize.

a take to bed

“Take you back to bed?” You tell him you still don’t understand. You try again.

WHY is John sad? 
no sad
Okay. Is something bothering John?
Yes or no?
yes

And you tell him you want to help, can he please tell you more, can he type more?

neat mom sat on bed
sleep mom sad wake up mom
back ward school

What does it mean? Backward school? Go back to school? And he continues:

dad grandma house train
dad number 012345
dad grow plant
home mom
dinner
movie popcorn
bath time
bed time
brekfest
dad no hi
dad air up
dad chikfil a
the muppet show season 3
sesame street surprise watch
moo bow elmo puppet
fair boat
hot air balloon
lunch
fair boat home
dinner movie bed
back to school
lost home ant jt
go home
nose
watch to baby da vinci
jelly fish

This. All of this. You need to de-code and you need to alert the press. This is the longest conversation you’ve ever had.

The day you discovered Sesame Street’s “Divorce: Little Children, Big Challenges” downloaded on his ipad without any help you knew that he was taking it all in and processing. And today you see, god how you see, just how much he has to say.

Words

Count Your Blessings

I’m not sure when I stopped paying attention to what was playing on the radio — no, that’s not true. I stopped once I had kids and was more concerned with what dangers lurk outside — as if I monitored it all, I could keep my boys safe. NPR, news stations, weather and traffic updates.

I’ve started listening to music again. Adele? Love her. How did I live without her?

Throw your soul through every open door
Count your blessings to find what you look for
Turn my sorrow into treasured gold
You pay me back in kind and reap just what you sow.
—”Rolling Back the Deep”

I think the toughest thing I’ve faced as a mother was John’s heart surgery when he was a baby. And although autism has been a rocky ride? It is this holiday season that takes second place. Count your blessings, and I do. I must. I’m so grateful for family and friends who swoop down and envelop me with love, and for each of you who reads — thank you.

Granite Days

I feel my way through the days, I am parting sheets of granite with my bare hands. Sometimes the effort it takes feels both herculean and insufficient. Everywhere I look there are things to be done, things to look at. I feel my power surge and fall and with it my ability to sleep. But I am strong. I feel this as an absolute. It can be no other way.

My children show me this every day.

A little boy who has always insisted others draw for him, whose grasp on a crayon or a marker has always been hesitant and weak — this boy has accomplished the herculean. Drawing by himself. Sometimes with prompts but more and more often self-motivated. Finding his power, his ability, his strength.

Contracts

We are a household of contracts — some sacred, some broken. I love you is one. The day you marry, they are binding and loud and carry the punch of possibility. Eventually I love you rolls off your tongue like a habit, Working late. Sorry. Love you. Old and familiar meant to quiet and reassure. You hear I love you and think He loves me, not He loves someone else.

But you should be listening to the subtext. You should be on high alert and why is it you have not been on high alert? Oh, trust? Yeah. Well.

I think I love you is overused.

It is different when it comes to my children. My I love you for them is a song my entire being knows by heart. I love you is not a habit or a manipulation or a ruse. My I love you is my compass, my truth.

Sam has his own ideas about contracts. I’m not clear on how or why he organized his thoughts under the heading of a “contract,” and am only slightly concerned that under traits for John he came up with “tormented.”

(When asked what he means, he explains, “You know, when I torment him?” Yes, of course. Terrific.).

I ask him, “And what else is here under John? ARTISTIC? Did you mean AUTISTIC? and he sighs and says, “No, Mom. I mean ARTISTIC, that’s what it says.” Well, I guess it does.

Sometimes, we say what we mean and mean what we say. I don’t know what to do, though, when words are the places we hide behind.

 

The River

The thing about feelings is this: they either rush through us like a river and empty out of us or they course around and meet a wall — a wall we build when it’s not safe to let it out. The boys rush to me in the mornings and each curls into a side. I feel like a bird, plump with wings made just for this. Their eyes are crusty with sleep and they yawn and burrow. They are so tall now, all gawky hard angles.

“Mom?” he says, “what’s on tap for today?” For Sam, schedules are still paramount. He likes to plot it all out — which is why weekends, with chunks of time to fill, can be problematic. We talk about how it’s Monday (hooray!) and he has a regular day at school and media — his favorite. We talk about what types of books he will check out (we’re back to extreme weather and the world atlas). We outline his schedule (first morning meeting, then math, then reading…).

Then he says, “I love you Mom.” I love you too buddy! I say as brightly as possible because in an instant the river has rushed up behind my eyes. The wall is close to coming down. John is still quiet, his arms circle me from the other side. He listens to us and then says “Go to school?” We get up and begin the morning routine and I’m all super-efficient Mommy making breakfast, packing lunches, getting clothes. As long as they are okay, I’m okay.

Slow Motion

Three weeks ago my life imploded and ever since it feels like I’ve been moving in slow motion. I think this is what happens when your life shifts — and mine is definitely shifting — your vision is crisp, the blinders are off. So many things are clear right now, here’s one…

…John’s brilliant light.

This boy’s light is dazzling. I’ve always known he was special, but god is he smart. So smart. His teacher reports that he is close to one of his classmates, a little girl. When other children cry he claps his hands over his ears, but when M. cries, he goes over to her, puts an arm around her shoulder and says, “S’okay Mo-mo.” I kneel down in front of him and ask him whether he would like orange juice or apple juice and his eyes, god his eyes, look me straight in the eye when he answers, “Orange juice?” I catch my breath.

Small things to other families, incredible for mine. Empathy, expressiveness, comprehension. This is what else I see…

…Sam’s tenderness, his heart.

He worries about everyone and wants to name feelings. I try to give him kid-size words for adult problems. I tell him he is a kid and the grownups will fix the grownup problems. I tell him that everything will be fine, that he is loved, so loved. This is a boy who studied Thomas the Tank Engine videos for clues on facial expressions, and who could probably lead his own social skills group. He says, “I love you so much, Mom.”

It’s So Loud Out There

I know I’ve been silent. Everything feels muffled to me these days — the way the streets do after a new snow. I reach out, I reach within and I come up empty. The words fail me because the feelings are all Pay attention to us! Don’t be rational about it, just wallow! On Saturday morning I sat in a parked car and sobbed. In that moment I felt outside myself, a bystander to something foreign and a little embarrassing. The me outside myself looked down at the me inside her car and asked Do you feel better now? Did you just need a good cry? Will you snap out of it now?

The morning did not start well. It began with a fight with Twins Dad over dishes. Of course all epic fights begin with something this inane, clearly standing in for bigger things. I do everything. I don’t feel appreciated. I’m scared. I’m tired. I feel like a bad parent. Who cares if it’s true, it feels true in that moment. At one point I stood in the kitchen and screamed at the top of my lungs, exactly the way Sam does when he doesn’t get his way. I felt outside myself then too. The me outside myself laughed at the me screaming in the middle of her kitchen.

I mean, it was a little funny — hours later, after we had hashed it all out and were speaking again. I realized that I can only change the way I react to this life, this huge life that we’re living — I can’t change much else.

A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

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