Reporting from the front lines

Well I've been here 24 hours and all I can say is... I don't even know how to put it into words. This gig is nonstop. Laura wasn't kidding when she said there is hardly 2 hours between anything. It's a marathon.

Simon is right on schedule with the vicious pushback.  They said the end of week one is where the rubber meets the road and kids start to "show resistance". They weren't kidding.

Like Laura comes out of a session covered in food or there are fork scratch marks on the wall or I can hear him growling like a wild beast all the way in the hallway where I wait for them.   It basically looks like Simon is saying " Are you f-ING kidding me?  I've been a good trained monkey for a whole week. You want me to keep this crap up? Bite me!"  And then he has a last snack where he takes in twice the volume asked of him. Classic Simon.

 It doesn't help that she's on her own on the weekends in terms of doing feeding sessions. 3 of the 6 meals a day are done with a therapist during the week. Weekends are all her. It's...kind of intense.

The hospital is beautiful and sparkling clean and everyone is super friendly. And it's still a hospital. There are little babies being wheeled by hooked up to oxygen and kids cruising with IV poles and security guards who very gently ask me not to nap on couches in the cardiac waiting room because they can't tell in security cameras if I'm asleep or or had a heart attack. Seriously.

My dear friend Christopher brought food by and stayed for a short visit between meals. Will try another similarly timed visit tomorrow with a mom and her daughter about Simon's age who also has cardiomyopathy (know them from our Listserv).  I think no visits during the week though. Too intense.

Tomorrow night I get on a plane and leave Laura to do this mishegas on her own for another week. Then I get in the ring.

She's a freaking rockstar you guys. It's a lot like when she was in labor. It was really hard and really intense but it was finite and I knew she had it in her. She has the same look in her eye. I'm not worried.  When she comes out of a feeding session and says "god that sucked. This is really hard" I just say " yep. I'm sure it did. Tell me all about it". Like she just made it through a wicked contraction. There is a point to this stress and exhaustion and extra laundry. We might actually get this kid off the tube. For good. It's possible that that last batch of blended food Laura made over a week ago was our last. Not guaranteed but totally possible. That's kind of like a baby in my book!

Normal doesn't mean easy

We had our Friday all team conference today. Simon is ahead of he curve. He's taking in more calories than expected. He's right on target for self feeding. He's learning and meeting his goals with leaps and bounds. It amazing to hear that they are projecting us meeting all of our goals by the end of week three. I was told to come up with four goals and really only plan on working on the first two. It's incredibly inspiring. Jaime cried (it's amazing that she gets to teleconference in on some of his sessions and our Friday meetings). She posted on Facebook and the response has been overwhelming. So many "Go Simon! Your killing it! Yay Team Shimmy" and more of the like. It's really emotional to feel so many of you pulling for us.

At least I can imagine it is. Here on the ground it doesn't quite feel real because, as one clinician said, he's about to really start pushing back. Week 2 is all about the denoumont and it's totally normal. True to fashion, Simon chose his own timing for it. We started a little early, which when you have a finite amount of time, is, I guess better than late. There have been times in the last 12 hours that I have heard more guttural noises coming from my child than I have in my all my years playing college rugby....and that's a lot. I have been scratched and punched and am currently wearing more food than I got to eat tonight.

"It's normal" she said. I hate our normal sometimes. Our 'normal' has meant so many things that I would have never put under any umbrella labeled normal. It's kind of hysterical. If you think if hysterical as being rooted in hysteria (in its colloquial use, describing unmanageable emotional excesses.)
Yup, that.

Jaime arrives in a few hours and I can't wait and am more than a little nervous. I feel like I haven't seen her in weeks, very very full weeks. It's only been 5 days but each day has felt like weeks and I don't have any idea how to download what's been going on. I'm so excited to get a break and don't wan to miss a moment of the two days that we have together. I need to do laundry at the Ronald McDonald House and get some fresh air and hold her as close to me as possible at the same time.
What kind of normal is that?

Still, Simon and I lit the Shabbat candles tonight and said the blessings. We marked the end of one week and will have some time in between the start of the next. I'm hoping that the time 'in between' includes some respite (even while keeping the same schedule in terms of meals and snacks with just me doing them).  Again, what is this new normal?

Hysterical isn't it?

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Whump there it is

Simon was going to sleep tonight, it was later than usual and we were both feeling spent from the day. I feel him finally begin to settle with the big twitches transitioning to little twitches and finally he moves his body one last time before the deep breathing begins.

I slowly begin to prepare to leave the twin hospital bed that we share for the going to bed ritual when I see in the dimly lit room that he is in the position. I feel a wave of images and terror wash over me. He's lying there with both his arms raised over his head, breathing deeply, rib cage exposed. Because of the position,  he looks almost like an infant again. Like he did before he was diagnosed.  All I can think of is that time in the hospital when we went in thinking it was pneumonia, got the news that it was his heart and waited for what was coming next. An unimaginable next.

Aaah, the real bits of PTSD. I have pain between my eyes. My shoulders feel itchy from the inside. I want to cry and vomit all at once and my instinct is to lie spooning him as tightly as I can.

Instead I'll type on this stupid iPad keyboard and tell you how our day went and pray that some sort of sleep comes tonight so I can get through tomorrow until Jaime comes for the weekend.

The bummer is that I think we can't have visitors. The clinicians gave me the go ahead to try it out but warned me that it might be more difficult for Simon than not and could be detrimental to his three week stay. We had a visitor Tuesday and I didn't think much of it when the late night snack and bedtime seemed difficult. It was only the second night, and surely things were still so new, that it made sense.

Tonight when my sister and family arrived, I thought I had planned it out so well terms of timing. We could have a little visit, all go to Turtle Time, split up for dinner and then have some playtime before bed. No problem.

*imagine me shooting myself in the head here with my  middle finger*

We had the hardest dinner, even more difficult last snack and most challenging bedtime we've had in years.

So, I think no more visitors for a while. We might be able to try again during week three. I don't think I can handle the disruption and I don't think it's worth it for folks to come for the 20 to 30 minutes that would be our limit.

How the fuck do you do this?

I miss people. I miss Jaime. I miss shared meals and fresh air and the outside world. I know it's three weeks and have no doubt that I can do this, that Simon and I can do this. Holy hell it's hard.

I actually think that the team might know best when they say that it's preferable to just kind hunker down, nose to  grindstone, and bring it in to a keyhole focus.

I want to talk about Nelson Mandela and who he was and is for me in the world. I wanted to talk with my sister in real and deep ways. I wanted to connect with my niece and nephew that I don't see enough. I want to invite local peeps to come again and again. I want to take folks up on their offers to help/support/give respite.

It's too disruptive. It sets both Simon and I up for something that's two and a half weeks away. It takes our focus off the task at hand.

The truth is that we are up to the task. We are working this program hard and learning so much from session to session. It's not that long either. It's already Thursday night and Jaime is coming tomorrow evening for the weekend.

Simon is changing from meal to meal and has started to gain back some of the weight that he lost in the first couple of days. He is eating foods that were previously to difficult for him and taking more and more spoonfuls and forkfuls by himself every meal.

His connections to individual team members are amazing to watch and as much as I struggle with him struggling, there are more successes in each moment than not. Each day feels like a week but then I can also see the growth in those days is also equal to a weeks worth of work.

Ok, getting punchy and I think the Advil PM is starting to work its magic.

"Everybody's working for the weekend" is starting to play in my head.

Here's to one more day before a break.

Where's Simon?

There he is!

See, it's like THIS, Minnie

May I have this dance? 

And promenade...

Thank you dahling.  You're mahvelous!

Help me!

Heart? What heart?

In five and half years, I have never forgotten Simon's heart meds. Not once.
This morning in the hospital the boy blessed me with a 6:40 wake up; so much more civilized than yesterday's 5am wake up. We snuggled in bed for almost 20 minutes, played with the talking Hulk doll that he now can do a great imitation of  (Hulk smash! You want more? Hulk smash more!!!) and then got dressed in a leisurely fashion before heading down the hall for our first feeding session.

It wasn't until we came back from our post feeding session gym time that I realized that the child had not gotten his meds.  I only realized because the nurse came by to apologize for not bringing them before 8:00 like she's supposed to.

I couldn't believe it. I had completely forgotten his meds. This is the kind of shit that I am usually on top of. It's ingrained in my brain like knowing to put on clothes before walking out the door. It's been so automatic for the last five years that even when Jaime is on Simon for meals and meds I can't help but ask her if she's  given certain things at certain times because it's just part of my body clock now.

Today however, not only can't I tell you what day of the week it is but I didn't even notice that the nurse hadn't brought Simon's medications to him for over an hour and a half after she was supposed to.  I can't tell you the date except that I know there was a Disney sponsored holiday party from 5-7 and while it was happening where Turtle Talk usually happens, Crush would still be showing up to talk to Surfin' Simon without fail.

We have feeding sessions, we have playroom time. We have meltdowns and upswings and food scavenged off post therapy trays. Simon is amazing. He is testing and surprising and strong willed and willing to learn. He is attentive and takes breaks and loves his 'team'. His imagination is so rich and travels us to lands and adventures that simply make me smile- except when I have to be Captain America to his Hulk and really focus on the bad guys.

I feel more than a little exhausted but got some fresh air today as Simon and I walked the perimeter of the hospital campus searching for the green space that someone told us about. We couldn't find it but the quest was worth it for the vitamin D and non-recycled air.

Onward and inward (cuz that's where the food needs to go)

...and scene.

And the Fan has been hit

Here we are at the end of week one and it's amazing how much you can pack into one week. Err, I mean day. Holy heck friends. This is intense.

Our first session this morning went relatively smoothly with Simon eating mostly the way he does with me at home. Just a little pushback for therapist #1. No biggie.

Simon and I had a relatively simple snack an hour later and spent some nice play time in our room and the community room down the hall. Lunch time brought a new level of resistance with therapist #2 that I haven't seen in Simon for years around food and then by the afternoon snack, the child was almost unrecognizable in his resistance to therapist #3.  This boy likes to test and he does not like his routine changed (or his primary feeding buddy changed, or his sleeping arrangements, or his social life, etc etc). Where does he get these wild ideas about stability and getting into a groove that one should never ever get out of? This Taurus (Chinese zodiac Ox) couldn't tell you a thing about that. Nope, not gonna do it.

We have an hour here and an hour and a half there and volumes to record and turtles to talk to and nurses to charm and melt downs to have.

I grab handfuls of trail mix on the go and Simon snuggles a lot more when we stop for a moment. We walk the halls with kids on Chemo drips and colostomy bags.  We get handed knick knacks wherever we go by nurses and child life specialists.
Oh yeah and it's DAY ONE!!!

Rachel, the other kid's mom and I wave to each other as we head off at the same time for our respective eating sessions. Hers are downstairs while ours are just down the hall, our two Littles sitting regally in their red wagons as they get pulled from one moment to the next. We are on a tight schedule.  We are living in tight spaces with tight expectations. Even the language feels tight. No yes or no questions. Only two choices. Do you want to eat three more bites of watermelon or drink two big sips of milk? Do you want to go to Turtle Talk or the playroom? Do you want to ride in the wagon or walk? (sometimes there's a fire truck option as well)

It was really hard to watch Simon resist so much by the time we got to afternoon snack with the third therapist of the day. I knew that I could step in and comfort him and get him to eat more. But that's not my role right now and it's ok that he only ate 1/4 of a sandwich and not much else. They need to see where he's at and then meet him there to bring him the rest of the way. They are so supportive and so good about redirecting and keeping their cool. He leaves each session laughing with a clear and affectionate "bye Erin, bye Hemma, bye Grace." I know that he is taking it all in even if throughout a good part of the session he showing them the proverbial finger in his special five year old way.

Wait, have I mentioned that it's DAY ONE?!

There are more therapist to meet, more food to order, 5-7 components for each meal and snack, and more exploring to do (waiting areas are very cool here in this hospital).
There's really no poop hitting any fans. It's just wicked intense. I'm ok.
I even ate a salad tonight.  It's all good. 17 more days to go.

And it's a ......Hospital

There is a clock that ticks loudly (and is an hour off). The fluorescent lights in the hallway never go off and it's important that the window in the door to our room not get blocked for security reasons. The curtains are sheer and even though Simon and I don't have any lines attached to us there are still lights and monitors that don't stop blinking and can't get turned off. One of Simon's shirts and a pair of his underwear are hanging over them right now as I try to get the room to some shade of dark. There aren't that many, but I can still hear the "trauma stat" announcements over the PA every once in a while as well as the occasional sound from a child who has reason to be unhappy. All of this to say that this is an incredible place and I know some magic is gonna happen here....in this hospital.

I am re stimulated. I know these light blue wafer thin blankets. I know these curtains that run on rails in the ceiling. I know and love these nurses that learn my child's name in an instant but refer to me only as 'mom'. I know this food, these smells, these lights and sounds.

I know exactly where I am and in one instant it is so familiar and then in the next so discordant with the child running next to me along the hall in his new monster slippers and street clothes.

I have my very own binder, blank food log reports, and hospital bracelet. Simon has toys already borrowed from the playroom and made his own, a new love for Turtle Talk (time twice a day to have real time conversation with Crush, the turtle from Finding Nemo), and an understanding that we are now part of an 'eating team'.

He will no longer have anything put through his g-tube during waking hours and has had his last tube feeding as of 11:30 this morning (maybe for good?)

His first supervised snack was at 3:00 and it was more a chance for the feeding therapist to watch and record a typical 'feed' with Simon and I so she could get a sense of where he (and I) were at.  I was half expecting a grade at the end or at least a little bit of feedback like one gets after performing on So You Think You Can Dance. Will America call in and vote for Simon & me?  Because, while  I think this afternoons performance has room for improvement, we could very easily become Americas best eaters.

I'm tired and wired and can't believe we have 18 more days of this. We haven't even had a full day yet and I'm overwhelmed with everything that needed to get done. And that was just an 8 hour day.

Simon is a trooper though. He is just amazing and once again is the greatest teacher in being present for each moment, moving through the hard ones and savoring the sweet ones. His laugh and smile are of course already the talk of 3North.

Tomorrow begins with a 7:30am weigh in and then we head down the hall in our very own red wagon for our first real feeding therapy session.

All of the love and support coming our way is amazing.  Thank you. Thank you. Thank you.  It's lonely here in the hospital but it makes all the difference to check the interwebs sporadically through the day and feel the love. It's quite amazing really.
Please forgive me for not responding directly to each one of you since that would be my dream. Instead just know that I am eternally grateful but am busy counting spoonfuls of yogurt.

So much love
Laura

First night and Ronald is not delivering

The makeup is a little creepy to begin with so it's not like I was
expecting him to be delivering the warmest of welcomes to Orange
County.  Still, we are here and Simon is sleeping soundly next to me.

I don't think I've felt this lonely or scared since I was nine years
old and heading off to summer camp for the very first time.
Since that turned out ok (or technically speaking amaze-balls!!!) I am
trying to have faith that this experience could be just as life
changing and transformative.

But, here we at the Ronald McDonald house, a place no parent ever
expects to visit, surrounded by other parents and kids practicing a
different kind of childhood and parenting, getting ready to spend 3
weeks in the hospital working on getting Simon to eat all of his food
via his mouth instead of a surgically placed plastic tube.

Sounds nucking futz when I read it back but the again it's all he and
I have really known.

I'm scared. I'm hopeful. I have no idea what's coming.

We are in a strange place getting ready to do what seems like such a
strange thing with very friendly but very real strangers to us.
And, lying down in the strange bed with Simon, getting nose to nose,
is about just as familiar to me as breathing.

He brings it all home.
I am his anchor.

It was clear to me as he easily slipped into bedtime mode with
familiar requests for getting under the sheets and making a fort, make
believe check-ups and singing along with favorite songs played quietly
on the itouch.

I realized that if I am his anchor, I need to get my crap
together and feel grounded. It's interesting though, the duality of
feeling grounded and present (for Simon) and at the same time feeling
alone, lost, and wondering.

What's coming? How will he respond? How will I? When will we laugh?
When will I pee? Who will be the people that we say Hi to as we make
our way around the hospital?

Who knows?

I guess I'll know a little more tomorrow.  Stay tuned.

T-1 Day And Counting

It's Sunday morning but I've been awake since 5 am.  I just keep spinning about what is going to happen in the next month.

This afternoon I will put Simon and Laura on an airplane to Orange County. They will live at Children's Hospital Orange County for *3* weeks while Simon does his intensive feeding therapy program.  I can't quite imagine what life is going to be like for them or for me. Those guys are going to live in a hospital 24/7 and I'm going to go to work M-F, coming home to a construction zone, and then going to Orange County for the weekends.  I'm going to stay for the 3rd week and learn the program too so both of us will be "trained" on how to get Simon to eat 100% by mouth.It's already been insane for the last 2 months as we've been in and out of our house that's under construction. This just feels like more of the same but also...HUGE.  Simon could get off the feeding tube.  And we will have to be working a "program" with him every time he eats without the safety net of the tube to make up for things (leaving the g-tube in for a while but the goal is to not use it).

The last few months have been incredibly intense. We moved into a sublet the first week in October, went on a week long trip, came back to the sublet for another week, moved in with my cousin and her 2 kids for 3 week and have been in our house while it's been under construction for the last month. (For the record, bean bag chairs are not as comfy as they look and it's really hard to eat dinner every night half-reclined and mostly sprawled on the floor.)

Where we spend 90% of our time at home

So it's been total chaos for the last 2-3 months, we go to a hospital for 3 weeks and then two days after we get back,  *BAM*, this new chapter of our life will start.  We will move all our stuff back into our apartment, Laura and I will have our own bedroom and perhaps have a kid who doesn't use a feeding tube. When school starts again,Simon will be in a new class (a special day class) for Kindergarten.  We're really excited as his class will go from 27 kids and 3 adults to 10 kids and 3 adults. Hopefully he will be able to thrive here instead of just feeling overwhelmed all the time.  That said, he's totally starting to read. More sight words than we can count and sounding out words everywhere we go.

That's what has been going on. Ya know.  No biggie.

What's about to happen is amazing. I keep saying the chaos and stress and disruption is "immediate but temporary".  I think that's how the next 3 weeks are going to be too.  I think Laura and Simon are going to get their ASSES kicked by this program and I think it's going to be worth it. We are in the home stretch to...something.  I keep wanting to say "an easier life" but I think it's more like "a new set of challenges to work with". My only hope is that it will hold more sleep and dinner parties and a kid who likes school...

The Wicked Witch!

Two fisted eating

Arrrrrgh!

Little Drummer Boy

Stargazer

Kelly Clarkson Got It Wrong

I admit to watching American Idol. It started when Simon was in the ICU back '08 so I missed the first couple of seasons. I did not see Kelly Clarkson win season 1. I have however, developed a penchant for her brand of empowering pop song. I can't deny that "Breakaway" makes me feel good. Still, she got it wrong with one of her latest. "Stronger" has a nice message and has even been turned into a music video that's gone viral with lots of children with cancer singing about how what doesn't kill you makes you stronger.
On Wednesday though when I was driving to feeding therapy with Simon and the song came on the radio, all of a sudden my throat caught, my eyes welled up and all I could think was, sometimes, what doesn't kill you doesn't in fact make you stronger.

 It makes you tired all the time. It makes your life so different and unrecognizable from what you ever imagined. It makes you live with a constant undercurrent of fear and post traumatic stress. It brings along regular irritability, systems that don't take your experience into consideration, friends and family that sometimes just don't get it, and a feeling of it all going on and on without end.

Sometimes what doesn't kill you changes your life in ways that make you have to find the light in the darkness BUT it's the darkness that feels pervasive, not the light.

Today I want to tell Kelly that she sucks. Cardiomyopathy sucks. Developmental and physical delays suck. It sucks that there is no end in sight to medications, therapist and doctor appointments. It sucks that I continue to feel 'other' when it comes to Simon's peers, his schooling, his day to day functions. It doesn't make me feel stronger. It doesn't make me walk taller or feel a little lighter. It  makes me feel helpless and alone. It makes me feel exhausted and so heartbroken for my son.

The sick part is that it's mostly me. Simon has never known anything else and so there's not this huge sense of loss or contrast for him. It's my own attachment to what was or might have been pre diagnosis. It's this darn attachment thing. To that other life, I both had and imagined.

Folks in our special needs community often come back around to the conversation of Life (or God, or whatever) not giving you anything you can't handle.  Today that just feels like bullshit. Today I feel weighed down by this life and I'm not getting stronger but more and more hardened or flattened. Tomorrow might be different but today I have no patience for it. I know that I genuinely like people but when I have to go through two hours on the phone explaining why they should not deny my son feeding therapy, I end up feeling more like people suck.

When Simon comes home and cannot stop asking me the same question over and over, looks to destroy things in our sublet, and begins to poop while sitting on the couch, all I want to do is turn on the TV for him and leave.

 I don't want to have to explain over and over again why it is in fact medically necessary for my son to get off his reliance on a feeding pump.  I don't want to think about how he still can't hold a pencil or run or understand more than one direction at time.  I don't want to police his every bite or continue to wonder if he knows how to go to the bathroom on his own reliably. I don't want to think about fighting insurance companies while also looking into private schools that we'll need a 90% scholarship for that STILL may not accept him let alone provide the right kind of education for my kid who comes with medical and developmental issues.

I'm fed up balancing the stay-in-the-moment way of living with the all too real possibility of heart decompensation, transplant, and death. As much as I appreciate and love my various heart, eating, Special Needs communities.....I want out.

I'm really really tired of it. Like really.
I think I'm even more tired and fed up that I don't ever get to say "I'm done. Thanks for all the lessons. I'm a better for it ....aaaand scene."
It feels like I don't/won't ever get to do that.


Simon ran almost an entire lap around the tennis courts by our house this afternoon. He was so happy! I captured it on video. It's his special kind of running but he did it. I had this moment of lightness when he was coming in at the end.  A full lap
And within seconds he coughed and gagged and his eyes rolled back into his head. It was only a split second (or maybe 3) but there was the roller coaster feeling of elation, the drop and terror that's followed  immediately by a sense of relief that this is not 'the' time. It's exhausting.

So Kelly Clarkson, and all you other upbeat people that are going to tell me that it's really making me stronger and that only special people get special needs kids to parent and that we are never given more than we can handle....suck it.


Maybe it's the construction going on at my house. Maybe it's being displaced for three weeks and two weeks more. Maybe it's the insurance companies and their 'let's see if she tires and lets it go' mentality. Maybe it's the stupid worksheet homework my son has to do in Kindergarten. Maybe it's the heart disease that could kill him or the low muscle tone, the speech delays, autism spectrum, chronic constipation, feeding tube, daily medication  bullshit regiment.

Maybe.

Maybe it's that I just haven't been to yoga in 3 weeks.

Sorry Kelly. It's not personal.

Fate is a Cruel Mistress

This disease is hideous.  Really, truly hideous.

Tonight I was lying in bed with Simon as he was trying to fall asleep and wondering if it's worse to have a diagnosis that is for sure degenerative and inevitably leads to death or something like Cardiomyopathy that leaves you with some totally cruel semblance of hope.  I don't know which one is worse.  I just know they both suck.  A lot.

A little girl on our Cardiomyopathy listserv who has been stable for the last 5 years just had a routine cardiology check up.  A check up just like the ones Simon gets twice a year.  The check ups where you just do all the tests to make sure everything is chugging along like it should be.  The kind that I get nervous about but tell myself to chill about because he's doing great.

Well, today, a family that has been chugging along just like us, with a kid that seemed to be doing great, got the news that if the med blitz they are about to do doesn't work, in three weeks, they'll have to go back into the hospital and put her on IV Milrinone. Their cardiologist cried.

This news comes on the heels of the death of a 6 year old on our Listserv who was also stable, got a virus and was sick for a few days. Then he just died in his Dad's arms at home.  His Mom was tending to his one month-old brother who was also just diagnosed with this disease and is critically ill as well.

Matt, a teen on our listserv, just had a heart transplant last month. He, too, was stable for years and then about a year and a half ago, started to decline.  He was listed for a heart for over a year and his family spent months in the hospital with him while they waited.  Months.

I feel like it's taken almost everything we've had to make it through the last 5 years, to claw our way up to some semblence of a normal, stable life. When I get news like this, I feel like a bumbling cartoon character who walks through the scenes ignorant of the anvil hanging over their head by a fraying thread.  The idea that one gentle exhale from Fate could tip us back into the abyss we just crawled out of makes me furious.  And like we're morons for even trying.

I know there is not really any other alternative than putting one foot in front of the other and hoping for the best but it just seems futile sometimes.  Sometimes I just want to sit down on the curb and cry and stop trying to keep up with everyone else.

*sigh*

Lest the despair of the macro swallow us all up whole, let us switch to the micro (or not so micro) for a minute.

In about a month, thanks to the immense generosity of my mother (who is also our landlord) our apartment will be transformed from a 1 bedroom, 1 bathroom apartment without a separate dining room to a 2 bedroom, 2 bathroom palace with a dining room!   Laura and I will FINALLY have our own bedroom and Simon's toys will not be all over our common living space.  I can't even quite fathom what our lives will be like.

Most of the work has taken place with us living there since we're building out the unfinished space under the house, behind our living room wall.  We've been in a sublet for this week, go to Hawaii for a wedding next week (I know.  Amazing), have one more week in the sublet and then we will get to move back in.  It might not be totally finished but it will be done enough for us to live in. We'll post a bunch of before and after pics when it's done.

That's where we are.  Grieving, terrified, stumbling along, and having great lives in spite of the terror. Simon is getting the hang of Kindergarten.  Laura is leading a support group for parents of kids with special needs. I'm trying to get back to regular exercise with really fun classes at the YMCA. We're all trying to do good in the world as we go.

It's...life, I guess, and it's what we got, so I'll take it.  I just might be a little pissed about this particular deck of cards sometimes.

Have you ever seen a healthier, more alive looking kid?

Walkmans I have loved

My first one was back in the early 80's. It might have even been in the late 70's when I was still in the single digits. I had found $75 dollars on the street during a walk when I went to kick a brown paper bag on the side of the sidewalk in the Bronx. When I went to pick it up (I was responsible even then) and put it in the garbage I noticed the $$ and felt like the luckiest kid the world. $25 went to my sister and $50 (a fortune at the time) went to Radio Shack and a Sony Walkman. They were the newest thing and I was already a lover of music and was so excited to have my very own player. It played cassettes, came with its own earphones, was blue and silver and was almost the size of a VHS box. A little bigger actually. I loved that thing. I loved walking up to the local grocery store listening to my Air Supply cassette, the music turned up loud so that nothing but "I'm all out of love, I'm so lost without you" was all I could hear. The Bronx was sometimes loud as you can imagine. Living with an opera singer (my dad) was sometimes loud. There was loudness growing up.

It was such a delight to put on those headphones and just listen.

I love Music. I would fall asleep to it on low. I would wake up to it. Listen to it on the bus to and from school, on the subways and buses that took me around the city. My walkmans got smaller as my music collection grew. I graduated to a Aiwa player that could fit into my pocket. Then a discman. Years later I had the faux iPod and then finally the actual apple device.

Before Simon was born I imagined myself taking lots and lots of walks with him either in sling or stroller, getting back in shape, and listening to music to pass the time.  Even before he got sick it didn't work that way and certainly after we started our stay in the ICU and I was spending 17 hours in the hospital, music and a 'player' showed up differently for me.

I stopped putting on the earphones. We still played music, Simon and I, but it was different. It was together. It was singing. It was for expanding his and my world. During his first 4 months it was a lot of singing. I sang that boy every camp song I could remember (and after 23 years of being at/ working at camp, that was A LOT!). We played classical, jazz and folk. I even threw in some R&B, rap, and Pop so that he'd be well rounded. I loved having music playing while I bounced, nursed, change diapers, and repeated that cycle for hours on end.

When Simon got sick and we landed in the ICU, that first day, we danced to Brand New Day from The Wiz. We needed to feel the hope, the beat, the magic that music can infuse into a contradictory environment. We brought in our player and had music going most of the day and night to counterbalance the beeping, the alarms, and the sounds of an ICU. We played Om for Simon. We played Pachel Bell's Canon for Simon. We played early Michael Jackson and Joni Mitchel for Simon.  I was as glad for portable music then as I was that day at Radio Shack when I turned on my walkman for the first time and heard Cracklin' Rosie get on board and felt my world begin to have its own soundtrack.

Today I woke up to an empty home, save for Roxie dog. Jaime and Simon are in Oregon. I have a few days for myself. No tube feedings. No meds. No appointments. Just me and the dog.  So I strapped the gentle lead on the dog, put my 40th birthday present in my ears (an iPod touch!) and headed for a nice long walk around the lake. It's my new practice. I practice moving my body. I practice smiling. I practice taking care of myself (and Roxie who's getting older but still needs to get all fours moving). My goal is to be known as the smiling short haired lady who walks the lake and says "Hi" to everybody. I still listen to music. I just turn it way down so that I can listen to the sounds of my beloved city and every response to every "Hi" I offer up. I think of it as an homage to Oakland, to Simon, to expanding my world in the same way that I was looking and am looking to always expand his.

And, his is about to be blown wide open. He's starting Kindergarten in less than 10 days. He's heading into a classroom with at least double the kids than he's used to, fewer teachers, and a curriculum that's gonna kick him into a higher gear than he's ever been. It's so right on time. He's been getting ready for this in one way or another for the last 5 months. His eating and talking kicked into high gear in April right around his birthday.  He learned how to swim underwater and stuck with his thrice weekly lessons. He attended summer camp for 7 weeks this summer with a full day schedule that included less tube feeding, a typical curriculum and a larger class size with fewer teachers.  It wasn't an extreme shift but just enough to be a graceful middle ground to what he's going into from what he's come from. A Special Day Class is 10 or fewer students with three teachers for 2.5 hours a day. Simon was in camp with 15 kids and two teachers for 7 hours a day and he did splendidly. He also learned how to swim, solidified eating 30-50% of his nutrition by mouth and is engaged with his peers in new and wonderful ways.

We have a lot to do this year for sure but these last few months have really been about opening and taking risks and stretching the little man's world in big ways. Not too painful, but like a nice walk around Lake Merritt, smiling, saying 'Hi' to strangers, and listening to the soundtrack of both the city and the music in my ears, his entire magnificent self has been worked out but is also ready for more.

Pick up tomorrow is at 8:10am. And yes, I will follow the bus and make sure he gets his tiny hiny into class (and not just because I have to turn in paperwork.)

It's Kindergarten folks!

It's Serious!

 Or maybe it's like flying a kite!

Or, we could just Dork out! 

The Drummer Is Always The Coolest

A little photo montage of Simon drumming away and rocking the sparkly headband...

Fifth Anniversary

Today marks the 5th anniversary since Simon got his diagnosis.

What a long, long, LONG way we've come...

From this

To this. 

It is a miracle made possible by love and hope and prayers and help and random luck. 

Thank you all for helping us get to today.  

The Hulk

Lately, I pretty much forget that Simon has extra stuff going on.  Then, we have moments like tonight and I am reminded that we are doing "parenting plus".

He's been on a kick the last few days where about half the time he's talking, he's declaring, with great emphasis, and triggered by nothing apparent, "I'm ma-yad!"  "I'm ang-a-ry!"  I'm frus-trated!".  We ask and ask, "Why are you angry?  What happened?  Are you angry about x,y,z?"  He won't answer and looks even more mad that you're asking him about it.  So we try a new tactic- "Yeah, I hear that you're mad" and nod sympathetically.  Sometimes no matter what we do,  it spins him into a fury.    

This, as you can imagine, is somewhat maddening.  Almost more so now that he's pretty reliable about communicating needs and wants.  Bopping along and then hitting a pothole like this makes one a little...mental. 

On our evening walk, our dog was a total jerkface and went bezerko on another dog. Laura got caught in the crossfire and was really pissed about it. (Rightfully so, I might add.  I was pissed too  Our dog can be a total asshole).  About 30 minutes after we got home, Simon said, apropos of nothing, "Mommy is mad".  

I decided to take the opportunity to work on answering direct questions.  "Why is Mommy mad, Simon?" , I asked him.  "Buffalo dancer!" he replied.  I sighed and coached him every single step of the way to get him to say, "Mommy is mad because Roxie hurt her".  As soon as I got the whole thing out (coaching practically every word, I tried to get him to do a quick repeat to cement the process.  Total popcorn.  "Roxie burped"  "Roxie farted"  "Roxie is a drummer" "Chicken dancer!" with his charming little impish smile on his face like it was a game.  

I am not clear if he can't remember what happened, he can't figure out the process of pulling out the information to answer the question or if he's just fucking with me.  Whatever the cause, I felt like this: 

I was so mad I wanted to scream like a wild beast and throw something.  Instead, I took a deep breath and tried to wipe the disappointed/irritated look off my face.  It's so hard to know we may never know the answer to what the heck goes on in his brain.  We're making progress toward more typical communication but I still find it so frustrating.  And a little terrifying.  I don't have any faith that if anyone hurts him or does something creepy that he'll be able to communicate about it.  I don't generally walk through the world afraid of stuff like this, but he's out in the world more on his own and it's something I think about every once in a while.  Ugh.

On a better note, Simon's Duncle Mike (Donor Uncle) and Auntie Virginia and his brother Daniel and sister Emily came up for a visit yesterday.  We keep intending to get together every quarter, but we  average more like twice a year.  It's always sweet, but this time felt a little different.  

Simon and his brother (who is 19) just went off by themselves and did brother things like this:

Then he played brother/sister games with Emily. 

He got some good Duncle drumming time:

And we all got the thing this only child of an only child of an only child wants for her only child. 

Family time. 

I am more grateful every year that we chose to build our family the way we did.  Thank you, Universe or whatever you want to call it, for putting Mike and Virginia and Daniel and Emily (and Ari, who wasn't there) in our paths.  

We have created a more lovely family than I ever could have imagined.