I'll Have The Special Special Please

Driving to our morning appointment to cast Simon's feet and ankles for braces.

Laura: "Simon, we're on our way to get your feet ready for new special shoes."
Simon: "I love special shoes." Pause  "I feel special."
Laura: "You are special."
Simon: "I feel special.  I feel happy."

And then he went on to prove both.

About a month ago it was recommended by our physical therapist that Simon get braces for his feet and ankles. There was significant pronation and weakness and she wasn't seeing the progress that she'd hoped for.

I don't know why but for some reason this hit me so hard.

Simon's feet (among other things) have been through so much. First there was the special position that the left one was in when he was born. It had clearly been bent and tucked up underneath my bottom left rib (so that's what felt like a stake poking out from the inside!) and could not only be flexed back all the way to his shin, but could also turn completely inward and be in line with the rest of his leg.

Then there was the time in the hospital where every few days they would be testing for blood gasses and need to prick the heel for a few drops of blood. We were in the ICU for 113 days. I can't do the exact math but Simon's little tootsies were poked no less than 25 times.

We've worked hard at bringing his sense of footness back to a positive place. I've massaged those dogs, gotten him exciting socks, made trips to the local Foot Locker just for fun, and Jaime has even painted his toenails a lovely fuchsia all to celebrate the 'foot'.  So when we learned that we needed to get his feet cast before they could make the SMO's (braces) I was already dreading the appointment as another one of those times where I needed to distract/hold my son down while something was 'done to him'.

Add this to the feeling of sorrow that Simon needed the braces in the first place and the last couple of days kinda sucked.

I prepped him. I mentioned it three days ago, then yesterday, and of course this morning. I don't overdo it. I just let him know that it's coming. The language goes in even if the meaning and understanding doesn't. I had the toys, the Ipod Touch and the towel (in case of throwing up) all prepared.  I should have listened to the boy in the car and relaxed a little.

I'm already smiling from the "I feel special" comment when we get into the office. He says a robust "Hello everyone. I'm here." as he walks into the waiting room and follows up with "I want Trains".
Crap, that's the one thing I've forgotten.
Not to worry, the room that they put us in has a train table. We are blessed.
Our clinician comes in and right away sits on the floor next to Simon at the train table.
Laura: "Simon, this is TD. She's here to help us get your special shoes."
Simon: "Hello TD. Good Morning TD.  I want a Hug."
And there you have it.
She hugs him.
He says he loves her.
She's charmed.
He's more than fine and we're off.

After she watches him walk and stand and tiptoe she agrees that the braces will be beneficial. It will take about 30 minutes to cast them. I'm still nervous

TD: "I'm just going to go and get my stuff and come back and we can get started."
Simon: "I love stuff. I want stuff. I love stuff."

She's back in less than two minutes and Simon is already into her bag of stuff before it's on the floor. He gets her to put the blue latex gloves on his hands instead of hers and while she's gone getting another pair he continues his "I love stuff" tirade.

He wants to hold the sticky casting tape, picks out his patterns for the plastic brace part and straps (Helicopters for the plastic sea creatures for the straps) and goes back and forth between watching a Sesame Street podcast (spectacular is the word of the day) and TD wrap his feet and calves. His right leg goes without a hitch, peep, or any bit of struggle and he only pulls back once as she wraps his left leg.

I can't express how amazing this is. How amazing he is. He is my special special.

I know every child is special. I've worked with children since I was 16. They're amazing and so much more resilient than us more 'mature' folk.  Simon is an exaggerated example of this. He has been through so much in such a short amount of time. What is amazing to me is how deeply he has already learned to be present for each moment, celebrate the goodness and move through the harder ones. He will let you know when something is not to his liking for sure AND he'll also make sure that he latches on to what can be enjoyed while it's there. Most of the time it's people. If there is a person around to have a good time with, Simon will figure out how to have it.  I know that this may get us into some interesting situations as he gets older but right now it's a huge gift for this little toddler man. (Already thinking of several inappropriate teenager or young adult situations that might not be great to attach that last thought to.)



I know I've said this before and there have been countless woo woo writings on how our kids can be our teachers..yadda yadda, woo woo.
Still, I gotta say that Simon is mine and one of the best that I've ever had (and I've had a few great one's).  Speaking of great one's, my mom and dad put it into a lovely visual on the phone today.

Most of the time Simon and I are learning together, walking down this road hand in hand. Sometimes I carry him (he is a toddler after all) and sometimes I'm the one dragging or even digging in my heels. I'm stubborn when it comes to evolving.  I will start to slowly slip back to walking in that rhythm of fear or mistrust. I do it regularly.  That's when Simon ends up being behind me. Little hands placed gently on me (I would say my back but he's not that tall yet so it's really more around the bottom of my tush) pushing me forward until I gain enough momentum that he can hold my hand again as I try to keep up with his little evolved self. The one that requests that I be present in each moment for him. Especially the one's that he seems to be able to glide through much more gracefully than I.

There seem to be so many on this road of parenting a Special Special.

Thank goodness he's with me.

Fuckin' love him. I really do.

Why we will win Parents of the Year... 

(where's his right hand? Holding on to a light bulb in a plugged in lamp..that's right)

The fist pump is accompanied by a "Goooo Bra!!"

So proud of himself

Hearts Are For Breaking

Simon's broke once, literally. It seems to be on the mend. Mine has done it for years.

I think the first time was in the 3rd grade with my friends and the ways that girls hurt each other. My heart broke right then and there when I was told that I wasn't wanted anymore in the 'singing' group that I started. Then there was the first love that feels like nothing else and being cheated on with 'our' good friend. My Nana passing after I was the last person to be with her and to tell her she could go. Loves that came and went, all the while my heart is breaking over and over. 

I heard once that once a heart breaks it's only more open and an open heart is just that; open even wider for the next time that love comes rolling in.

These days it feels like my heart breaks a lot. So much more often since Simon came into this wonderful and wicked world and even more consistently since the day he was diagnosed with Cardiomyopathy.

Simon was playing today at the park. Auntie Dre, Auntie Joan and I each taking turns playing with the little man, spotting him as he climbs, helping him find dandelions, making him squeal with glee as he learns to play chase. And then, less than five minutes into the latter, it's there, the gag and heave. He pauses, brings both hands up to his eyes, pressing them tight to feel some sensation other than the nausea and/or reflux that he's feeling.

He doesn't know any better but my heart breaks wide open. It cracks and splinters into a million pieces imagining my son running and playing and NOT having to stop after just a few minutes of laughing and trying to catch his breath.....from laughing and running.

A minute passes and he's off again, heading over to his beloved Aunties for more chase. I feel the weight of it move up from my own chest into my throat and threaten to come pouring out my eyes. I don't want Simon to see it and 'play' lie down face first on the grass. I manage to get out at least three sobs before I feel it. At least 27 pounds of love jumping on top of me with a loud "hellooooo Mommeeeee," and for the 2nd time in less than a minute my heart breaks all over again.

They almost feel the same. The first breakage is all about how much I love him and want nothing but ease and grace and goodness for him in his life. I know that's not going to happen (mostly since it hasn't since he was born). I know that his life will include medications and limits and comparisons and hospital stays and who knows what else...(more vomiting, shortness of breath, pain, transplants, ???)  I also know that he doesn't know any different and by golly if he isn't one the happiest kids, or just people, that I've ever been around. I know that.
I see it day in and day out.

This little bulb o' mine burns brighter than most in the box and while I like to think about how he's one of the new compact fluorescent ones that shed light farther and longer than the older shorter lasting incandescent ones, he's still got a paper thin layer of glass around him that's not meant to withstand much and like my own heart day in and day out, could easily break into a million pieces.

And then I think about the heart muscle and one of my favorite t-shirts that Jaime has. It has a message that plays over and over in my head most days. "The heart is a muscle the size of your fist. Keep Loving. Keep Fighting." Simon's heart is a muscle. It's a muscle and a teacher and a toddler mess of fiery sugar sweet snowballing loving that I am blessed to have thrown my way more often than not. He can break my heart over and over again for all I care.

No really, for ALL that I care about, Simon can break my heart over and over again.

.

No quotes with these. I think they speak for themselves.

And last but not least, video from Simon's first Dyke March (that he remembers)

 

I Walk the Line

I think a lot of parents do it. All the time. The line between the parent they want to be and the parenting that they may be doing in any given moment. The line between the parent with their child's best interest at heart (hah) and the one that shows up when the bank account can't handle it/what needs to get eaten before it spoils/amount of sleep I got/could you just stop whining/move faster/put on the clothes that i already picked out/ 'just do it' parent takes precedence.
I know that I've certainly been that parent. Both of them and I relish the lifelong journey of finding a given balance to it on a given day.

But lately I've been walking a different line and I'm feeling once again that my parenting is just that little/lot bit different than the typical caregiver.

My son is going to summer camp. He's got one week between when his Special Day Class (SDC) ends and the extended school year (ESY) program through the district starts. He's also got five weeks between when the ESY ends and his SDC starts up again in the Fall. Most parents are looking in to camps for their kids. Or, their childcare is year 'round and they have nothing to worry about (except for the astronomical cost associated with having to pay other people to care for your child so you can work to pay the bills- we really dislike children and parents in this country...but that's another rant).

Simon has been at his SDC for two months now and the time away from me, with his peers, learning so much more than I could teach him, has been incredible. For both of us, these last two months have been a gift in seeing us both come a little bit more into our own. For sure I have enjoyed the break but Simon...good gravy, the boy has just been exploding with growth and joy. His favorite catchphrase of late is "I looove (fill in the blank)"; Recess, his friend Pharaoh, Speech lessons, the school bus, Scuba divers, Penguins, Sweet Pea (his horse from Therapeutic riding), and my personal favorite, Mommy and Mama. That's right, he appropriately used an 'and' in a sentence.  His language, his peer interactions, his awareness...it's all just blooming like the allergens in the Bay Area air.

So with the time off now and coming up later in the summer, it seemed imperative that I find Simon some kind of comparable program for when ESY ended. And so the line walking began.
What kind of program should I look for?
What kind of program will be safe for him AND challenge him the way he is hungry for now?
What kind of program will take him?
Will they be open to tube feedings?
Will they be comfortable administering medications depending on the time of day?
Will they admit a child with a stable but critical heart condition?
Do they a program that he can keep up with cognitively as well as physically?
Will he be able to cool down if it gets too hot?
Will they have a financial aid program or at the very least be in the "we could probably make that work" price range?
Will the day be short/long enough? Not too short that he's needing more but not too long that he needs a longer feed/medication/rest.
Will they get that while he looks stable and oh so handsome, he actually is delayed with his gross motor, fine motor, and cognitive skills and needs a little extra attention?
and on and on...

Some of these questions are meta enough that any parent might ask them. I know that. I feel it.  And then there are the questions that are so specific to Simon and all the things that he brings to table.
And he's 3
And he's tiny.

And by golly, if we have to spend a whole week (and then FIVE) just the two of us, gazing at each other's navels all day every day, there will be summer storms here in the bay Area.

So there I was, researching camps/daycares/programs for my child and all I could hear over and over in my head was the rich deep baritone of Johnny Cash.

I Walk the Line.

I wish I could insert an audio clip here because if you know the song then you know the resignation that his amazing voice conveys. It's the resignation that I was feeling for the last two weeks of never being able to find the right summer program for Simon and what side of the line should I lay it down. Do I stand to the side that looks like a good program but doesn't have any experience with special needs (and so I train and explain and lay the $ down knowing that there might a good chance it's not a good fit or Simon can't keep up with the program/won't get fed/ get the attention that he needs) OR do I find a program that is specifically for children with Special Needs but won't challenge Simon in the high functioning but still special needs and medically fragile way that he requires. AND where is that program that deals with my child but won't make him wait until he's 6 or 12 years old.

My sweet little man doesn't quite fit into any of those programs. Like any person bringing up a little person, I want what's best for him. What's amazing and wonderful and really fucking hard is that it's changing all the time. That's not so extraordinary.  For Simon, with his developmental delays and medical issues, and love of the world around him, the trick feels like choosing what to prioritize in any given moment.
For whatever reason this moment feels higher staked than others.

It feels momentous. And I'm scared. We finally found a piecemeal plan of things for him to do and not one of them feels like a good fit. One week of indoor camp, four weeks of ESY, three more weeks of indoor camp, one week of outdoor camp, one more week of indoor camp. Lots of themes, lots of hours, lots of sun, lots of training on tube feeding, extra diaper changing for programs that only accept potty trained kids, keeping up, not being able to keep up, not being challenged, too much challenge....it's all there.

In the middle of it all are regular appointments for feeding therapy, weigh-ins, wellness,Therapeutic Riding and Physical Therapy.  There is swimming to do, friends to see, and of course medications to take, and barfage to clean up.  We live a full life over here.

So I'm scared. I'm scared for Simon in so many new environments. I'm scared to forget a minor or major detail in training the 6th or 60th person on how to connect and run his feeding pump. I'm scared that there doesn't exist the right program out there for him and all his many beautiful and difficult issues.  I'm scared for all the new germs and places to trip and fall, and I'm scared for that new and exciting game that get's introduced that's too much for him and his stable but once very sick heart.

I'm also scared to let these fears taint or grey summertime for my son. Summer was and still is a time of great joy for me (in memory certainly but also in present). I want him to savor summer time and camps and friends and water and cold tasty treats. Yes there might be cooling vests and thinking about how to balance fluid intake with Lasix dosing, but I want Simon to make lanyard jewelery and listen for the sound of the ice cream cart and have summer romances and all that good stuff.

Either way it begins tomorrow. I drop him off for a week of Beaches and Sunshine. I will pack his pump and blenderized food and diapers and change of clothes and hope that the other kids are no more than a foot taller than him at most. I will hope and have faith that they will watch out for him just a little bit more than little Timmy or Suzy or Sage or Moonbeam (it's in Berkeley).

I will imagine Simon exploring this place and meeting these new people with the same twinkle and open smile that he has brought to just about every other moment in his life. I will wait until 12:30 and pick him up hopefully full of smiles and new names and love for summer camp. He can do it. I can do it.

I walk the line.

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line

I find it very, very easy to be true
I find myself alone when each day is through
Yes, I'll admit that I'm a fool for you
Because you're mine, I walk the line

As sure as night is dark and day is light
I keep you on my mind both day and night
And happiness I've known proves that it's right
Because you're mine, I walk the line

You've got a way to keep me on your side
You give me cause for love that I can't hide
For you I know I'd even try to turn the tide
Because you're mine, I walk the line

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line.


Johnny cash


and Laura Fitch

Yes, he is that old already

Super Simon!! The boy's got some powers!

And a sense of Style

 It was Friday night and he's the one that asked 

to wear the Yamulka and say blessings

Holding hands with Manav on the way to the park

A Reminder

This morning, I'm feeling a little pissed.


I'm pissed that Laura and I are so easily launched into terror by things that normal parents have the luxury of shrugging off. Like a few barky coughs in the middle of the night.

Normal parents have not had the the mask ripped off and seen the bone and gristle and red shiny pulsing muscle that lies just beneath the surface of life's rosy cheeks. They don't hear a small boy cough in the middle of the night and start to shiver, terrified of what it might mean. Don't flash to lab coats and thin sheets and bright florescent lights. Don't mentally list what to pack and for how many days and how quickly it can be done while lying in bed trying to slow a racing heart and dreading the next noise out of their child.

I try so hard to sink fully into the plodding rhythm of our full and happy life. I look forward to our dates with friends and waving goodbye to Simon as he rides away on the school bus and doing my yoga class in the mornings. I love our lazy evenings spent lying in the hammock, playing "surprise!" and reading "Hoppy Passover" again and again. Walking to Arizmendi on the weekends to charm scone-munching early-risers. Watching Simon's gorgeous little body romp around the backyard naked when it's warm enough to have some naked time. Blowing bubbles in the bathtub before bed. Simon's closed-eye smile as he fakes sleep when we wake him up in the mornings to go to school.

I do NOT appreciate being reminded that that can all be ripped away from us, even for a week like last winter, by a few goddamn coughs that could put us back in the hospital.

Give me some goddamn space, you dumb-ass disease.

Seriously.

I get it. I know you're there. Message received.

Just give us some frickin' SPACE to be normal parents without terror poking it's sleek, beady-eyed, needle-toothed head through the surface every time there's a little tremor.

Back. Off.
 
p.s. Simon seems fine this morning. Laura and I...a little rattled.

All A Parent Could Ask For

It's 9:03pm and the little boy is squawking in the bedroom. This has been his practice lately and while we seem to have been blessed with sleep training having been done in the hospital two years ago, there seems to be a toddler phase of sleep training happening here at our house as of late.
As is our approach, I slip into the room and sit quietly by the toddler bed. My boy rolls over and as he is wont to do lately, begins the round two ritual of 'night night'.

"Hug. Love"

I put my forearm down the length of his body and lay my head down on the blankets that are bunched around his chest. My other hand slips underneath and rests sandwiched between my forehead and his beating heart just underneath the skin.

We sit quietly for a few minutes and as I move to come up for air he quickly brings his hand to the back of my neck and pulls me back down.

"Hug. Love."

We resume the position. I hear his breathing begin to slow and wonder when the regular stroking of the back of my head will stop as he falls asleep.

While I'm waiting I'm starting to hear something come out of the quiet.

It's the quiet in my head, but as clear as if it was the knob on a stereo being turned, I hear it.

"Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie"

It's not as if I think this a lot. I'm sure compared to a lot of people out there I do, but given how much I used to think it during those first few months after diagnosis...really I hardly ever think it.

And certainly with so many more pressing things to think about these days- like what shall we do with three hours off, what will Simon bring home today from school for his art project album, what food shall we play with during therapeutic mealtimes, or lately, how long will this tantrum last, I hardly ever think about how this little boy's heart is so sick.

I think about other things related to that but not simply that.

But tonight there she was. Death was reminding me that while she sometimes looks so far away, waving us on as we pass her in our own little bizarre roller coaster/train ride, she's still keeping an eye on us.

There are other heart children that we know with Ejection Fractions and Shortening Fractions so much better than Simon's. Several of them really. Girls, boys, older, younger.  They are sick and they show it. On ventilators, in wheelchairs, waiting for heart transplants.

There are even other children with numbers worse than Simon that are running and playing in ways that Simon has yet to even attempt. I don't understand it and expect that I never will.

But tonight at 9:08pm when all I can hear is "Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie," running through my head, Simon shows me that there is so much more.

The volume gets turned down again and we're back to me coming up for air.

One more round of "Hug. Love" and I can sit up as he lets me go.

As I'm getting up to leave he says it again.
"Hug. Love"

I'm afraid we might have to start all over again only as I turn back to the bed I can see in the dark that he is giving himself the hug and 'love' and I think there is nothing more that I could want at this moment in life.

Isn't this what all parents want?

I know that Simon will always get love from me AND I know there will come a time when I won't be the one holding him as he falls asleep. I won't always be there to hold him after something gives him an 'owie'. I won't always be there to administer the medications and schedule doctor's appointments.

But if I can instill in him a deep love of self and love of the world around him, then I can worry a little less as the independent 'do-it-myself' Simon continues to show up.

Right?

Fer sure. Totally.

No Problem.

Hah.

Food Therapy. 

Don't judge. He gets all his fruits and veggies through the tube.

Loungin'

Twinsies.

Hugs and Love with Moses

Snuggles with Sophie

 High Fives with PopPop

MM and PopPop with Simon and Sweet Pea

A Numbers Game

Quick, how many people do you have to coordinate to get 2 people away for 27 hours to celebrate their 9th anniversary together?

"They're two, they're four, they're six, they're eight..." (a little Thomas reference for all our readers who must listen to that damn song incessantly)

Nope, keep going.  

Ten.

That's right, ten.

I started plotting months ago and I lined up Simon's aunties Joan, Dre, Abby and Bianca and my Mom and stepdad (that's 6) to take shifts so I could whisk Laura away to Santa Cruz for an overnight.  

Everything fell into place very smoothly, all systems were go. 

T-1 day and the first call came in. Abby and Bianca  had been battling a stomach bug all week and things were not looking much better by Thursday night.  We did not need a craptastic bug at our house, so they were off duty.  Enter our awesome babysitters Reagan and Pete (that's 2 more) who cheerfully volunteered to take shifts with him on Saturday.

They took Simon for Saturday morning, Joan and Dre took him that afternoon and everything was going swimmingly.  We were having a great time in Santa Cruz, purchasing hats, kitchen goodies, eating our way through the Greek Festival, watching a bizarre street performer and then went to the hotel to watch stupid TV in the middle of the afternoon.  Ahhhhh...this is what we had signed up for. 

Hitting the streets of Santa Cruz

 My new hat.  Laura insisted I buy it.  Within 15 minutes, I had gotten 4 compliments.  It was a good buy. 

The bizarre and beautiful street performer.  Gotta love Santa Cruz. 

Then... my Mom called.  

My stepdad had an awful sore throat, was starting to cough and she wasn't feeling very well.  It was time to call on our crew again.  A quick call to Pete (and a consult with his roommates/our friends Mel and Tanner- that's 2 more) resulted in coverage for Simon for Sunday until 1:30.

Relieved that everything was lined up, we went out to a lovely dinner...

In the garden of the restaurant. Gorgeous evening.  

 Farmer Laura, by the chicken coop

The view from our table

Our lovely meal (first course anyway)

We went to the Boardwalk after dinner, but almost everything was closed.  We did manage to watch some high school kids practically have heart attacks playing a dance video game.  Made me tired just watching them.  Also, took photos in the photo booth.  Who knew it costs $5 now?  Jeez, I feel old. 

After a good nights sleep (I did wake up at 5:45 a.m. out of habit, annoyingly), we went for a Brazilian  breakfast 

Then Laura  found what I like to call "Eden" aka Kiva Retreat House, a beautiful place with outdoor hot tubs, cold plunge, sauna, gardens, lawn,  sunshine and relaxation. 

Yeah, it's pretty much as awesome at it looks. 

The best part?  They allow kids!  We're so going back.

Overall Laura and I had a very sweet and romantic weekend and were acutely aware of how blessed we were to a) get away at all and b) have such an incredible network of people who were willing and able to make it happen and c) have each other.  Evidently, it showed. 

At one point, a woman said, while passing us on the sidewalk,  "you guys are such a cute couple!".  That actually  used to happen to us with some regularity in our early days, but we realized it hadn't happened since we had Simon.  I guess harried parents wrangling a child isn't as heart-warming as two relaxed ones on a get-away.  Or Simon is so dang cute he steals all the thunder and they don't even notice us when he's around.  Regardless, it was a great reminder of the spark we have together. 

So much gratitude, love and appreciation for our lives, our friends and family and each other...

No Turtle or Elephant I

Simon is amazing. He took the bus to and from school today. To and from the school that he's just barely a month into going to. He got on with one lovely lady driver and came home with another. He's smiling almost the whole time (he was not so keen the first time with the seat belt). He said good morning to Miss Tina as he stepped on the bus and gave Miss Kimberly a jolly "see you tomorrow" when he got home three hours later. He is amazing. He looks people in the eye and opens his heart (which obviously needs to be a little larger than the average bears') and says "Love, Hug, Aaaaah." It's a very clear directive both for the person that he's saying it to as well as for himself. A deep reminder that it's a truly wonderful way to greet someone, that you know well or are just meeting. Assessments, graduation, birthday celebrations, new school, new teachers, new friends...so much has gone down in the last 2 months. Still, he creates 'home' wherever and with whomever he's hanging with. Just like a turtle but with so much more room than just for one. Amazing.

Oh, and have I mentioned that the boy turned three. 3 . THREEEEEE!

It's not like it was an overnight shift but holy heck, he's turned three with a vengeance. It's mostly reserved for me but Jaime's gotten a bunch of it too. Pushing back in all senses. Tantrums. Wanting what he wants when he wants it. Digging in. Digging in deeeeeeep. Bedtimes, nap times, walks. Stopping an activity. Getting out of the house. Making it down the walkway to the house.....you name it I think he's wanted to do it or not do it at any given moment. My boy is three. Terrible two's...puhleeeze- three is the magic number.

He's been yelled at by other kids, pushed around a little, had the TV turned off, been made to stay in his own bed, been strapped into a stroller, and simply had his clothes changed. Oh the drama.

But here's the thing. He's got the skin for it. He takes it and bounces right back when he's ready (or when the right distraction tool is used- it's a balancing act). Seriously though, he cried for an hour last night as Jaime (bless her heart) worked her magic with getting Simon to stay in his own bed. He's been climbing into bed with us for the last month+ and while he almost immediately falls into a sound sleep, Jaime and I do not and for the rest of the night are dealing with a horizontal child and/or sharp little kicks to the ribs or neck. Not so much fun.

So last night, I am a huddling shaking mess on the other side of the bed as the child screams and whether it's biology or I'm just a wuss, it was one of the hardest things I had to do not to pick him up and just pull him into bed. It's much easier to believe in the moment that stopping him crying is so much more important than another awful nights sleep.

That said, after an hour of settling and ramping up again, the child slept. Soundly, without a peep for the next 6.5 hours, in his own bed. How many more nights of this will it take? We'll see.

But there he was at 6:20am chipper as always ready to take on the next big adventure with morning hugs and love and snuggles. No attachment to the rage and frustration that he was feeling just 6 hours before.

Like an elephant's thick skin, he's got the most amazing ability to let the hard things bounce off and like an elephants bonding capacity, Simon knows how to make incredible connections with the good ones.

Aside: It just about slayed me when as we're walking up to the bus this morning I say to him "Simon, you're about to take the bus for the very first time!" and he says "Shehechianu!" which is the Jewish blessing that essentially gives thanks for new and/or special occasions (we had talked about it days earlier!)

But the title of the post says no turtle or elephant I and while I love to sing the praises of my son, oh lordy I am uber jealous of him, especially today. Except for how slow those two move, I got nothin' like the aforementioned qualities. My skin feels rice paper thin and I feel a thick grey cloud in between me and everyone around me.

Walking around the lake today and even Wham's Freedom 90 couldn't lift my spirits. I just feel the funk. Simon's life is changing so drastically and seemingly wonderfully. 

I can't seem to catch up. Mine isn't. I even have a three hour chunk to myself 4 out of 5 days a week and I feel mired in the thickest of pea soups. I still feel alone. I still worry about his heart. I still think about germ exposure. I still have to make blended food and order meds.

I can't quite get past that yet to get to a yoga class or make it to the gym. I don't even feel connected to myself so it makes total but sad sense to me that I don't really feel connected to anyone else. That plus the nori seaweed thin skin and I'm feeling a little like a silkworm. Thin skin, slow moving, hungry all the time (she said polishing off a delicious Bit O' Honey), not often seen but damn if what I produce isn't one of the most spectacular things around.

Riding the bus

The day we forgot to shave before school

Helping Mommy cap 38 years

Hive Five PopPop!

The Grandparents meet Sweet Pea

Djaffar teaching Simon chess (or is it vice versa?)

I'm the one on the right

Thanks for tuning in.

OMG

 38. Simon's BNP is 38. This is the # that measures the hearts distress. 0-100 is a heart not in failure with 0-30 being a healthy typical heart. It was 3000 at it's highest. 30 fucking 8!!!!!

I go away for one night...

Post trotting

38. That also happens to be the age I will be turning on Sunday. 38. My new favorite #

Another First

At the tender age of 3, Simon has earned his first book dedication.

Seriously.

The backstory:

Laura and Simon and I walk up and down Lakeshore Avenue near our house at least once a day. We have become friendly with many people on that street. We often nod, say hi, wave and keep going. We will occasionally buy a coffee or cookie for the regular homeless guys, chat with the fellows playing chess, give hugs to the cooperative bakery workers. It usually ends with that.

However, every once in a while, we actually get to know folks.

We started becoming friendly with one Lakeshore regular named Djaffar about a year and a half ago. Djaffar practically lives on the bench in front of Peet's Coffee. He's a fixture. Whenever Djaffar saw Simon he would give him a big wave, a big hi and after a while would come in for a "high five". Djaffar was clearly smitten with Simon, as so many people are.

I always thought it was sweet AND pretty unusual that a man would be so interested in and engaged with a small child. All of my American training to be afraid of strange men would kick up and I was always friendly, but kept a certain distance.

Then one day, we stopped to say hi when Simon was getting a tube feed. Djaffar noticed Simon's feeding tube and asked what it was for. We told him the Reader's Digest version of our story and could immediately tell how moved he was by Simon's tale. From that point on, his affection for Simon was clearer and clearer. He started getting him presents for Hannukah and his birthday. He would shout hi from across the street. Simon loved seeing him. They clearly had a bond and we began chatting more with him when we would stop to say hi.

A few weeks ago, Djaffar said, "Hey, I wrote a book and I dedicated it to Simon". I wasn't really sure what to think. Our sweet friend is prone to hyperbole and I really didn't know much about him so I think I said something like, "That's so cool! Thank you!" thinking he was dedicating some amateur writing project to Simon.

Then last week, he gave us an honest-to-god published copy of his book.

And there, in black and white, is the dedication.

Of course, Laura and I both started crying when we read it.

I was called for jury duty on Tuesday and brought the book, Donkey Heart, Monkey Mind, with me. I finished the book by the end of the day. It was stunning.

It tells the story of Djaffar's life in Algeria and the politics of North Africa. It chronicles his undying optimism that he could actually get out of his home country and live a full and happy life.  It graphically describes the torture he endured in the various prisons he ended up in as he worked towards his goal of freedom. It details incredible kindness and generosity of spirit.

It's categorized as a fictional novel, but it was clear to me from the little I knew about him this was really about his life. He later explained to me that it was easier to call it fiction than to have to defend the veracity of every single detail of events that could never be proved to another person.

After I finished reading his life story, I realized that Djaffar and Simon are brothers of the heart.

This is the note I wrote to him:

"I love your indomitable spirit- the wiley, scrappy, fierceness that kept you moving and trying and trusting as doors closed and chains locked. I also love your willingness to believe in the goodness of every person you met, long after most people would have given up on humankind. So many people become bitter and hard and brittle after trauma, but something burns in you bright enough to shine through the ashes of your past. That capacity is a truly rare thing. I think that light is the thing that you recognize in Simon. You both have seen more pain than anyone should but are thrilled to be alive, to be here on this planet and to have people to love."

Knowing Djaffar's story gives me hope that despite all the painful, scary, tortuous things that have happened to Simon (and may happen again) , he now has a role-model for how to live life fully, keep his arms open wide and love with everything he has.

Thank you, Djaffar.

Birthday/School Update

On Saturday, Simon turned 3! We had a delightful party in our back yard, complete with our very own bounce house that we now own thanks to Mamaw. It was quite a hit and I think we'll be party central all summer. Laura and I have both noticed that we have some intense feelings that come up on Simon's birthdays. It is a reminder of how far we've come and a reminder that there were times we weren't sure we were going to celebrate more birthdays. I think it may always be bittersweet...

Excited about birthday singing and birthday candles

Having fun on the new bounce house

After looking at three different special day classes, we are 99% sure we found the right class for Simon. It happens to be at Montclair Elementary, one of the best schools in the Oakland School District! We are having all sorts of conflicted feelings about the institutional racism we have been privy to, after looking at 3 very different schools. More about that when we can slow down for a minute.

The short version is that it looks like Simon will be in a great class with kids pretty close to his level of development in a beautiful and safe school. He also will qualify for "Extended School Year" through the district so we won't have to scramble to find supplemental programs for him when school ends in June and he will instead get to continue his learning through the district over the summer.

He was supposed to start his new school this week, but he's been sick since Sunday afternoon, so we're hoping for tomorrow (Thursday). Unfortunately his new school will be on spring break next week, so he'll get 1-2 days and then no school for a week. Maybe it will be a nice, easy transition to do a few days and then have a break. It's what we got.

Simon continues to adore his hippotherapy (therapeutic horseback riding). Like, adore:

We have so much more to say but things have been really busy and intense. More to come when we can catch our breath...