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!

Neon Spandex

 

Nobody (except maybe morticians) likes talking about death. Certainly no one in their right mind likes thinking about children dying. Laura and I are no exception.

But sometimes we have to.

And we know that bringing it up makes people, probably even you, uncomfortable. Please hear me out as I explain why we have this most depressing "habit"...

From the outside, it may seem like we spend an inordinate amount of time talking about the threat of death from Cardiomyopathy. It might look like we're just wallowing in gloom and doom instead of looking on the bright side. This can be especially confusing when Simon seems to be doing great and we're still talking about death.

There is a reason for this.

Laura and I are two of the most optimistic people I know. The dictionary defines Optimism as " hopefulness and confidence about the future or successful outcome of something; a tendency to take a favourable or hopeful view". I'd say this definitely describes us.

We are also, what I would call, Down-to-Earth, which the dictionary defines as "practical and realistic".

Living with Cardiomyopathy means that our optimism must be tempered with what is practical and realistic, in order to maintain sanity.

We recently got more information from the Pediatric Cardiomyopathy expert, Dr. Towbin. A few months ago he reviewed Simon's echos and diagnosed him with something called Left Ventricular Non-Compaction, which is basically a more refined description of the anatomy that is leading to the poor heart function. Laura talked to him a week or so ago and was able to ask him specific questions and get more information. Dr. Towbin explained that kids with LVNC, more than other types of Cardiomyopathy, have a tendency to "go up and down" with their function. It's great that he's doing so well right now, he said, but that we can never let our guard down. And no one should ever try to wean him from his meds. He mostly echoed how we're approaching this disease (enjoying the good time right now but knowing things could get hard again) and suggested a few more tests we may want to consider.

It was both comforting and sobering to have our gut feelings about how this might look for the rest of our lives confirmed by the world expert. We've heard of kids that were deemed to have their cardiomyopathy"resolved",  told they had normal function, were taken off all their meds and then tanked abruptly and either died or needed heart transplants. I now wonder if those kids had undiagnosed LVNC.

When we mention this possibility to people I often get the distinct sense that they're thinking, "Okay Debbie Downer! Why don't you just look on the bright side and enjoy that he's so much better?".  This is particular true for people who have said, "How great that Simon is so much better!  I bet you're relieved" and gotten our somewhat depressing explanation above as a response. I understand that they're trying to be helpful and positive. We don't want to make people feel bad. AND, it feels important to convey that we're still living with this disease, it will never be over and it's not that we're just killjoy pessimists. We are enjoying this time of improved heart function and hope it will last forever, but we don't ever want to be that family, knocked on our asses by that sleeper wave again.

When I think about what Dr. Towbin told us, I combine my "optimism" with my "down-to-earthness" to crystalize into this:
I hope for the best quality of life possible, as few "lows" as possible, and that Simon does not die an early death from this disease.

I can not hope for a day that Simon is not on medications or a day that I can feel relieved that we are out of the woods. That day will not come. It's not a realistic goal and to pine for something I will never have is a recipe for madness, not happiness.

We are part of a listserv through the Children's Cardiomyopathy Foundation for parents of kids who have this disease.  There are a couple hundred families on it. We email each other constantly, checking in about how our kids are doing, asking questions about medication side effects, or funny symptoms or suggestions for how to ask our doctors hard questions. We share good news and hard news. We know each other. We are a community.

Every year a handful of children from this group pass away but Friday night I got news that * three* children from our Cardiomyopathy listerv had died within about 36 hours. This many, this close together is pretty unusual. As you might imagine, it's also pretty disturbing.

Someone close to us was with me when I got the news. She saw that I was upset and observed, gently, that Laura and I seemed to focus a lot on the death and dying part of this disease. I could tell that she was speaking to me as someone who loves us and doesn't want to see us suffer and wasn't trying to shut me down. But I still had to resist the urge to throw something at her.

I struggled to explain that when we talk about that grim aspect of Cardiomyopathy, we aren't trying to be dramatic, we aren't trying to shock people, we aren't trying to get sympathy. It's the threat we live with pretty much on a day-to-day basis. She posited that we all live with the threat of death every day, that any of us could be hit by a bus.  I inferred that she meant that we can't live productive lives worrying about death all the time, which I actually agree with. 

But...this is different.

As one parent on our listserv said, "yes, any of us could get hit by a car, but with Cardiomyopathy it's like we live in houses with a front door that opens onto a freeway". I'm not worried about Simon dropping dead out of the blue.  I'm worried about the delicate balance we've managed to gain over the last few years being tipped in an instant by something minor: a cold, a fever, something mildly concerning. It doesn't take much with our kids to knock things off kilter and we can suddenly lose all the ground we gained. I'm afraid of our lives being ripped asunder once again without warning, of the bug that will knock out all his reserves and leave us fighting a long, hard, awful, painful fight back in the ICU with the spector of death looming over us. 

Here's the analogy I came up with:

I said, "It's like we're gay men living in the 80's".

She stared at me blankly.

I realized she might be confused since we didn't have any neon spandex or cocaine in the house so it definitely wasn't the 80's and we have a severe shortage of testosterone or handlebar mustaches at Casa Fitch-Jenett.

"What I mean to say", I continued, "is that we live in a community that is staring death in the face every day, much like gay men in the 80's facing the AIDS crisis. The children of our friends on the Listserv are dying from this disease. This is not something that "could" happen or is happening to people "out there". It's happening to people we know, in our circle. And we have the same disease. It's likely that it could happen to us".

We live with this disease every single day right in front of us, worry about germs 10x a day, listen for a new cough every night, check for a sweaty forehead during naps, communicate daily with other parents who are also living with this disease, have relationships with parents whose kids are dying, pray for kids we *know* who are hanging on by a fingernail. There's something about warding off evil day-in, day-out that makes it feel a little different, a little closer than it is even for people who are so tightly in our lives.


It's so important for us to have people like this who can hold a focus point outside the storm, who can remind us that there are chirping birds and sunny skies out there. AND, it's also important that we keep a firm grip on a harsh reality so that we aren't caught off guard and spun off into the skies.

So sometimes we're going to focus on the hard stuff.  And we need to. It's our reality. It may not be pretty, but it's what we got. Thank you for bearing with us when we do. And if you struggle with this and try to tell us not to worry about Simon when we think we need to, we have a new code phrase that we will utter with love.

"Neon spandex".

Kinda catchy, right?

Mother of the Year

 

I thought I'd let the dust settle from Laura's post a little before posting again. Some because I wasn't sure exactly what I wanted to say, but mostly I wanted her to get the limelight for a while. She doesn't get it much these days. Laura doesn't get much public or direct recognition for this incredible thing she is doing, this  complicated and stressful raising of our son. Mostly she gets work and I get the glory.

I'm out in the world more, have more time to be connected to the internet, etc. I'm the one who gets emails and has people tell me to my face how much they love our blog, how inspired they are by what "we" are doing, how amazing they think "we" are. Each time, I try to stop and remind them how much of the credit goes to Laura, but it doesn't erase the fact that I got to hear it first.

And it's just not right.

Laura has many admirable qualities, but shameless self-promotion isn't one of them. That's where I step in.

Laura has an insane job. She typically works from 6 a.m. to 8-10 p.m. Without breaks. Without feedback. Without coworkers. Without pay. In hazardous conditions (heavy lifting, toxic waste, psychological distress). Without workers comp.

Her job duties include social work, nursing, pharmaceutical distribution, advocacy, chauffeuring, complicated mathematics (to determine calorie counts in blended food), operating heavy machinery, operating highly specialized medical equipment, preparing a specialized diet, translating medical information into plain English, occupational therapy, feeding therapy, physical therapy, medical research, precise time management, cleaning...I could go on for another 3 pages.

And she still finds it in her to be an amazing and present wife, sister, aunt, friend, daughter, niece, cousin, daughter-in-law...

Why does she do this job that none of us would ever voluntarily choose?

Because it needs to be done.
And because she loves us.

I don't know about you, but I think I'd start to crack up after 3 years of this. Laura, however, is maintaining her sanity better than anyone I could possibly imagine in this situation.

But we need help.

I need (and Laura too, though she'll never admit it out loud to you) for people to give her affirmations. Specific ones. Not, "you're such a great Mom". Like, specifically what she is doing that is making an impression on you. It can be here in the comments section, in direct emails, next time you see her, little voicemails, notes in the mail. It can be related to how she's taking care of Simon or it can be what she brings to this planet as an individual.

And I'm not talking about this being a one-time deal. This is what we need on an ongoing basis. More than food, more than birthday presents, more than any of the other things you can think of that you might try to do to help.  Focus on Laura. She might squirm and try to shift the focus away from herself as the humble, slightly shy person she is, but don't let her get away with it. Hook her with a tractor beam of love and get her good.

When you're with her, ask her how she's doing. And listen. Encourage her, in whatever way you can, to talk about how SHE is doing, not how Simon is doing. Doing something almost 24 hours a day makes it hard to remember that you exist outside of whatever it is, or that you're good at anything else. Reminders of what those are would be great.

Sometimes it feels like she's this bright, bright light hidden under a bushel. Sometimes the bushel is mounds of laundry and bags of blended food and fist-fulls of syringes. Sometimes it's the errant wave of crushing depression that comes with the territory we live in. I know the song says that she's supposed to "let it shine" herself, but as someone who adores her, I think it's also my job to help the process along a little.

I'd like to vote Laura Mother of the Year and I'd love to hear why you agree with me.

p.s. If you hear of any opportunities to really vote her Mother of the Year, especially if there's a fun trip she can go on or feature story of her or some other totally over-the-top reward, by all means, share :-)

A few of my favorite pictures of my dear wife

In repose

Hunka hunka burnin love

My personal favorite.  She looks demented.

Just about the sweetest thing ever

Just sort of says it all, doesn't it?