Wednesday, August 22, 2012

Sweet Child O' Mine

Our Littles carry so much with them. From the moment they are born they are like sponges. Maybe more porous at different times but still always taking in somewhat of their world around them.
For those of us that parent Little ones that have to go through so much during those first years (or even later years) it is amazing and heartbreaking to watch the ways it comes back/out/around again.

This morning Simon and I were just finishing up our morning routine. We had finished his tube feeding, he'd gotten his morning meds, the diuretic had kicked in and we were getting ready to change a diaper (his) and move from pajamas to clothes.  We were both in good spirits thinking about the day ahead. It included a meet up with folks we adored at a venue that induced huge smiles whenever it was mentioned (The Tilden Park Steam Train...duh!).

Blended food was prepared and packed with an ice pack. Shoes were on. Snacks in baggies and we were ready to go. Then, as I was just getting ready to ask Simon to head out the door I see him lie down on the kitchen floor and begin a familiar rant.

"Simon's gone. Simon's lost. I'm not here. I can't go anywhere."

I hadn't even told him that we were moments away from walking out the door but clearly he felt it.
"I'm gone. I'm not here. Simon's not here."

It's not as if this is the first time he's done this. It's very sad to hear and we don't exactly know what it's about but we let him work it out either mirroring it back to him "you feel lost, you're not here" or letting him know how we would feel if it were true, "I'm sad you're not here. I miss you when you're gone. I hope you come back."

It's hard knowing the right thing to say so a lot of time we just go and be with him while he's saying his thing.
It's often the same. The same phrases, the same intonation, and roughly the same amount of time (a few minutes at tops).

This morning was different. He was lying on the floor of the kitchen and I went to sit next to him. For almost 10 minutes he just lay there on the kitchen floor in the fetal position. Then he pulled the little kitchen mat over his head and began again.

"Simon is lost. I'm not here. I can't go anywhere. I'm not here. I'm lost."  Only now it's escalating and he's getting louder and starting to sound frantic. It hurts my heart to see the tears, hear him crying and moving quickly into a painful sob. He doesn't want me to touch him but cries harder if I move further away than just taking my hand off his back. When he takes the mat off his head, I see his eyes red and wet (and yuck from the kitchen floor but I let it be). This is different.

And then, almost as quickly as it ramped up, it's over.

He's taken the kitchen mat off his head, sat up, and asked me for a snack.

He's 4. I can't debrief with him what the heck just happened. He's 4

We go about our day. It's sticking with me that something different happened this morning but I can't think about it too much because there are mini steam trains to ride and a carousel to check out. We have a lovely picnic with our friends, a quiet afternoon at home and then a fun evening replete with Dim Sum in China Town and an awesome park with a huge Chinese Junk ship play structure.

Bed time is nothing out of the ordinary until I can't find the one book that he wants to read. It's maybe an extra five minutes of me searching but there it is again.
"I don't want it." Now that I've found it of course...but right into "I'm gone. I'm not here."
"Simon's gone. Simon's not here. Goodbye. I'm gone."

I lay my head down next to him on his big boy bed and that upsets him more but at the same time he reaches out and tucks his hand down the front of my shirt for comfort.
He's also so tired that he can barely keep his eyes open. Once, when they close and don't reopen right away I think we are in the clear.
I am still for a few more minutes as he is and then remove his hand kiss his cheek and head out of the bedroom.

I am pouring rice milk into the blender when I hear his cry from the bedroom. Before I can stop pouring and put the container down he's quiet again. Are we clear?

Minutes go by and I've actually made it through making half a batch of his blended food before I hear him cry out again.

It's not even one of those cries that you wait and see. It's the wail that makes you stop whatever you are doing and get into the bedroom as fast as you can. It's not the one where you stop and listen, pausing to see if it's the 'I just really want to stay awake and you coming in to check on me will only prolong the good night routine that I so desperately want to drag on and on and on' cry.


This is the I've just fallen out of bed' wail or the 'I just pulled my Mic-key button out' wail or the 'my arm is caught in between my bed frame and mattress and I can't figure out how to get off the mattress because my arm is stuck underneath it' wail.

Or, it's the wail of the child that has had too many blood draws, surgeries, spinal taps, picc lines, echo cardiograms, intubations, Dr's appointments, therapy appointments, etc etc.

I'm in the bedroom in less than 2 seconds. I pick him up and his arms curl around my neck as we move over to the 'big' bed. He moves away from me but not too far.

One round of  "I'm gone. I'm not here." and he's quiet. One arm across his face and one arm reaching out to my forearm. He's asleep even before my first tear hits the pillow.

I am completely overwhelmed by how much it hurts to see him work this out and how much I feel lost in how to help him.

I mean really help him.

I mean take it all away. Poof! "It's gone "-kind of help.  The "my magical Shop-Vac has just made it disappear and now there's only rainbows and unicorns and trains and dinosaurs and scuba divers" kind of help.

My brain knows that this is not my job. It's my job to provide love and safe places and opportunities for him to feel his feelings and know that he is whole and perfect and that while this is a part of him, it does not define him.


When my child who has been through so damn much and has survived and thrived and cheated death and is so amazingly beautiful is sobbing and shrieking in fear and all I can do is be there tell him I love him?!  THAT SUCKS!

It hurts. Really, my chest hurts. My migraine that I've had for the last three days takes a humbled back seat to the pull that I feel in my chest. Like a little fist (about the size of a 4 year old barely on the growth chart but with wicked blue eyes) has put it's small fingers around my own heart and is holding on for dear life.

He's been through so much. It's starting to bubble up at different times. The hard parts that have been pocketed.

The amazing parts have been there for years. The ability to connect with so many people. The strength and presence in new situations. The 'bounce back' from those hard moments that have to happen and then are done...those are the amazing gifts that Simon has internalized from all this- his absolute joy- these are huge.

And, now we're also seeing some of the darker parts. It's hard to suss out and so clear at the same time.
He's 4. Four year olds have mood swings. They are figuring it all out and it's hard. They want what they want and if they don't want it, they let you know.

And like I said in the beginning, those Littles that have been through more than their share of the hard stuff....I don't know. They have a little more to figure out, how it all fits, how to feel it all, how to feel the balance.

I don't really want to Shop-Vac away Simon's hard feelings. I want him to know that the dark parts can, in fact, become strength. I even think they can become tools for bringing grace and beauty and peace to his life.

AND, what parent wouldn't love the magical touch to make all of that happen in the blink of a PTSD filled tantrum, whatever your kid has been I don't

My sweet sweet child. I don't think I could love him more.

But we'll see what happens tomorrow ;-)

Simon and Mamaw from a while ago- How can you tell...

 ...because of how long his hair is!

Simon and Peter Pan up in the Crows nest

Last day of Cub Camp

Seriously?! He's such a dude. Too cool for skool

City adventures at Yerba Buena

 Rockin' all of his obsessions at once (Scuba diver, robot, and his shirt had a t-rex on it)

Post water fight
 Fox hat and the shirt says it all

Big Robot
 Small child

Written by:


andreana clay said...

so sweet that he gets to say all these things, over and over. hard for you, i know. but good for him that he has that space with you. lots and lots of love. sleepover soon. xo

Jen said...

Laura Fitch you are such an amazing mom. I know how hard it is to be there when the kid is sad and angry and frustrated and try to give that emotion space. I fail at it daily, so I'm all the more awed at my sister who can do it with so very much more behind the hurt. I am continually blown away by you. And yes FUCK THAT you have to do it at all. It just sucks. Rotten rotten and stupid and awful puppetshow bullshit. My sweet Simon. I wish I could take it all away too. Crap.

Leah said...

So hard to know what he means... Maybe one day he will make it clear. Meanwhile, commend yourself on your efforts. You work and love so deeply, thoughtfully and diligently. He is so lucky to have you just as you are lucky to have him. Hugs to all of you.

Anonymous said...

How is it after this post you only have two comments??? You're both amazing writers and I find myself turning your words over in my head all day. That little Simon is so cute I could just jump into the photos and take those little cheeks and pinch pinch pinch them!
I'm sorry it's so hard......

MissingMolly said...

Your love for your son radiates through your words. I'm so sorry that he suffers sometimes and it's clear how much it troubles you (of course it would), but I'm so glad he's here, that he also has many joyful moments, and is in the arms of his loving family.

Jessica said...

His "lost" episodes remind me of a series (4? 6?) of "I don't want to die" panic attacks my daughter had over a period years. No health issues, but her grandmother passed...was this why? She's highly verbal and began them older than Simon is now. We taught her autorelaxation strategies to cope. The fear in her strained face and neck ligaments, the look in her eyes. It cut me very deeply. Life is dark and hard, and kids know it. We can only witness and support. You did great!