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...

Big Changes at Chez Fitch-Jenett Part Deux

What Jaime said...And, over here in the internal world of the Fitch, it so much more complicated and likely why I have not written yet on this monumental marker that is coming up.

Simon is turning 3.
If you want to check out what happened last year, go here ( Beginning )
It's not an easy time for me. To have it coincide with so many other beginnings and endings, well, I feel down right exhausted.

The IEP was not an easy process in and of itself. Full of contradictions. It was so great and heartening (hah) to watch Simon be totally himself during each and every assessment. He did such a perfect job of showing folks what he could and couldn't do...all with his own particular brand of enjoyment.

And good on them (all of them!!) for listening to me tell them what they might not see during their one or two hours of 'assessing' my child.

There it was, all of it, right there in black and white in their reports. How lovable and personable and resilient and well-cared for, and steady and secure this little boy is. How amazing it is that he can count to ten in three languages AND what a large vocabulary he has! And, oh yes, how he is delayed here and delayed there and delayed most everywhere.

{Most amusing is where he lands on the self-care/eating scale- 1 month old. What one month old gnaws on a BBQ rib bone with spicy BBQ sauce remnants or asks for Thai green curry by name not to mention licks copious amounts of straight up cumin and paprika right out of the spice jar?}

Delayed and very medically fragile.

It was so hard to read all of the ways in which the school nurse (bless her heart- hah) made sure that Cardiomyopathy was laid out for every person that would read the IEP; how serious it is, how it can result in hospitalization or worse, the symptoms, the invisibility of it for some kids, the weakened immune system, blah blah blah....all of it right there on paper laid out neatly in organized paragraphs with links here and a statistic there. And thank goodness she heard me when I said that it's one thing to look at Simon, listen to him talk, feel his arms around you, see the light in his eyes, the joy in his smile, and believe that he does in fact live with this very serious, sometimes fatal, always medicated, up and down, not very well understood, stooooooopid fucking disease. She got it.

Sitting around that table listening to all the assessors and administrators give their reports, it was a true blessing (that I know from experience not every family gets) to feel like every single person at the table got a very complete picture of Simon.

Where he needs support, for sure. His strengths, yup, got 'em. But, they also seem to get something else. The mind bending, paradoxical, deep teacher that Simon can be, in how he lives with contradiction.

And so looking at what he was offered, what he will receive, what we will continue to push for (Part 1), I feel that we are so on track it couldn't have gone much better if I got to puppet master the whole thing myself.

Still, taking him to all those assessments, seeing so many of things that he can't do (over and over), filling out those awful developmental questionnaires, explaining over and over again that how he looks and acts belies the serious (and uncertain/unpredictable) nature of Cardiomyopathy, I began to  simply take in the fact of what this transition means. I will no longer be with him.

I won't be with him.

I know it's only for 2.5 hours a day (4 days a week) plus or minus some time when he starts taking the bus (which he has already expressed interest in). Still, that's more time than we've ever had apart before.  Who will help him up when he falls down? Who will notice when someone has taken something from him? Who will notice when he's taken something from someone else and teach him about sharing? Who will notice if he's playing by himself?

And then the parenting 'plus' moments. Who will notice when he's nauseated and needs to be reminded to breathe through it? Who will notice if he's sweating and or breathing hard? Who will help him when he gags or throws up? Who will be there?

I know all the answers and I even think I have a sense of what's rational thought versus irrational. I know there's risk involved and I know that this is what's right for him. I also know that it's more than likely that he will handle this transition so gracefully.  It still doesn't change the fact that I have been with Simon for 3 years. I have been his Mommy, caretaker, nurse, advocate, teacher, Speech, OT, PT, Feeding therapist, and playmate for three years. THREE YEARS.

Yes, other people have been there for sure. Jaime of course, Dianne, Aunties, Reagan (babysitter extraordinaire) AND that's not the same as being the constant Monday through Friday, every appointment, every Parent Infant Program, every wake-up, every nap, every med, every tube feed, every laugh, every change of clothes, every every.

I'm going to miss him. My life is going to change so much.

And not.

The reality is that I will likely only have one and half hours to myself. Between the drop off and pick up and the minutes of transition in between, it's barely enough time to come home, grab Roxie, and make my way around Lake Merritt at a run-walk (get your body back) pace.

Another contradiction.

I'm having a really hard time holding the truth of what's coming because the truth is I have no frikkin' idea AND I have to say I'm not that great with change to begin with so...what's happening?

Let's recount.

Simon is going to school.
Simon will be cared for by people other than me.
I won't be there.
He will get all the services that he needs.
I won't be there to see what they're doing.
It's 2.5 hours every day (except Wednesday when we have Feeding Therapy in San Francisco).
I will have 1.5 hours, 4 days a week, after drop off and drive home, minus time needed for pick up.
Simon is going to school.
He will wear a pack back that contains his pump, tubing, and blenderized food in it.
Simon will wear a back pack! (too cute visualization there).
I will miss him.
We will still have 6.75 hours a day together after school.
Simon will have fewer appointments throughout the week. (Unclear how many but we're working that out with OT and PT through our insurance).
I will miss him.
I will try and spend 1.5 hours a day doing something that is good for me.
On April 7th, Simon will graduate from PIP.
On April 9th, he will turn 3
On April 11th, he will start his new school.

I can't quite hang with all this change. I feel like my world is looking a little like some of the dreamscapes from the movie Inception where entire city blocks curve up and over like a tidal wave or the center of gravity keeps changing and alternating depending on the people or four walls around me.

That, and the endings. We have one more session with Cece, our beloved speech therapist (Simon had less than ten words when we started- just last June!!!), four more sessions at PIP, four more parent support groups for me, maybe one more home visit from Marybeth.....all these people that feel like they've been in our lives for so long! I hope that some of those relationships continue, I know some will and some won't.

I literally just took a deep breath and tugged the short hairs on either side of my head without realizing it until I heard Reagan laugh at me.


Change is hard. Big Change is harder.
Letting go. Riding the wave.
Pulling hair (not out. More like in a massage sort of way) apparently helps.

I'm sure there's more to come.

..................
Jaime and I got 20 minutes to connect tonight before dinner and bath time, etc. We talked about both feeling this deep sadness, grief even. Simon is about to go out into the world in a whole new way and it is without us.  He will make friends, have new adults in his life that will offer support, learning, comfort, and love. It's not I like think he's going to replace us as his primary people but more that we are having to share him.
For sure it will be a splendid thing that we unleash unto the world. I mean c'mon, the world at large could certainly use and only benefit from a little more Shimmy La in it. But I guess there is this little wonder in my head "there's enough to go around right?"

All signs point to yes. He is love straight up.

On that note I have to share simple deets from our cardiology visit today.

No change in function from a month ago (not surprising!) but there was a change in the nature of the visit (the last three having being pretty rough in terms of how the Shimster handled his ECHOs and dr's visits.)
Dude was a dream. No fussing, no squirming AND amazing hugs and thank you's to all of his peeps. The ECHO tech, the one from last time, the admin woman, the EKG tech, HunkyPants (who got a resounding 'Rosenfeld!!' when he passed by the door the first time), and the resident who did his blood pressure!
Little man was straight up love today. If he can do that at a Dr's appointment then I am not worried (99%- ok?) that he has more than enough love to go around.

Last image:
Last night Simon was newly stripped down for a pre-bedtime bath. I made some benign comment about his bottom. Probably something along the lines of "what a delicious tushy you have!"
His reply "Tusheeeeee. Hug it...............Love it"


Hug it


Love it.

 

Big Changes at Chez Fitch-Jenett

 

We had Simon's Individualized Education Plan (IEP) meeting with *8* reps from the school district and Simon's current Early Intervention Program last week to review what folks found in their assessments of him, what they thought he would need to address the findings and what the district would provide. It was a fantastic meeting- sort of the model for how an IEP should go- and it was hard. We (my Mom, Laura and I) sat for 2+ hours listening to these smart, observant, caring people articulate all the ways Simon is delayed and all the creative and brilliant ways he compensates. It's intense to have your child "scanned" as thoroughly as he was.

He had the following assessments:

•  Status 2 (to check for mental retardation and autism)
•  Occupational Therapy
•  Physical Therapy
•  Speech
•  Psychological

The findings varied, but the bottom line is that in some areas Simon is only about a year delayed and in other areas, he's at the level of a *15* month old. Uniformly, every assessment commented on what a sweet, happy child he is. It was almost comical to see almost the same words over and over in each assessment. And quite lovely.

 Here is what the district has offered:

•  a special day class (yea!!!) with 6 children, a teacher and 2 aides (yes, that's a 2:1 adult to child ratio!) Monday - Friday for 2 1/2 hours
•  extra Occupational Therapy once a week
•  extra Speech Therapy twice a week (with a male speech therapist- yea testosterone!)
•  Physical therapy consultations as needed
•  a site visit from a district nurse every month to check in to make sure things are still set up for him medically (handwashing protocols being followed, etc).
•  All the adults will get trained on how to do Simon's tube feedings.
•  a bus to school once we think he's ready.

Laura and I are thrilled.
And a little bit terrified.

We are handling these upcoming changes...moderately well.  I think we're both struggling with what it means to hand over our child to other people, even if is only for a few hours a day. It feels like this is the beginning of a much bigger process, of Simon becoming ever increasingly independent.  This is, of course, hard for parents of typical children, but I think particularly hard for parents of kids that are considered medically fragile.

Suffice it to say we're having some big feelings at our house.  We haven't quite figured out how to talk about it yet, so it may be a little bit until we can articulate them here.  In the meantime, we wanted folks to have the nitty-gritty since we had the IEP. 

We're going to visit the school on Wed to make sure we think it's appropriate for him and then, assuming we give the green light, he'll start April 11th!

The IEP Commeth and/or A Change Gonna Come

Tomorrow is the IEP (Individualized Education Plan) meeting for Simon.
This will change everything.

Longer blog to come.

Today, enjoy a video & pics from Simon's first therapeutic riding session.

I'm Ready!!!!

Vroom Vroom!

Catching bean bags

Giving Sweet Pea some love

Just look at his face

Standing up in the saddle (doing that while moving is next!)

Standing up on his own!!

Putting the brass (or blue) ring on

30 minutes into it and still raring to go

Sweet Pea gets some treats after a lesson well done!