A few days o' Shimmy

 

Simon gets a haircut

I think he looks like Biff from Back to the Future

Self Portrait 1

Self Portrait 2

Simon and Mama love

and last but not least...

These are all of the spices that Simon let me put on his tongue tonight.

thank you and goodnight.

 

Can you Canoe?

 
http://www.youtube.com/watch?v=V8pIaaQp7Y8
Pow!

I watched this video this morning. I had posted it to my facebook without even watching it and figured (as Simon and are getting ready to leave for 'school') that I should probably watch it.

It was like someone had taken a fist, and like you might bang it down on a table to make a point, struck me center in the chest.

The ominous music, the staggering stats, the awful prognosis...that's Simon. That's a truth of living with Cardiomyopathy.

It's not our day-to-day and doesn't at all speak to the oh-so-rich quality of life this boy has....not at all really. But... it is a truth we live with and sometimes it just comes to bite me in the ass.

So I watch it. And we're out the door a minute later.
I can feel the video still sitting like a lump. We arrive at school.  We sing, we play, we have snack and Simon is completely oblivious to the fact that Mommy is on the edge of losing it.

I keep looking at him so happy and vibrant....with an estimated five-year survival rate of 40-50%.

My head is swimming. Finally it's parent group time and I can sit in a room with other parents that 'get it'.

And here comes the latest analogy from my days of being a white-water canoeist.

 9:15- 11:00 The river that's been dammed up for about two hours is about to be released.

The river that's often running smooth with a good current and the occasional class 1 or 2 rapid has turned a bend and I find that I am all of a sudden part of a much larger waterway with a dam release scheduled where I wasn't expecting one. Where I can usually map out the route, noticing the large pillows and eddies where I might need to maneuver one way or the other, I all of a sudden feel the current pick up and am swept away at a speed which is both unchosen and dangerous. I want to slow down and go back to the mostly predictable paddling of before. I know there are holes and sweepers but I'm travelling at a pace that I'm comfortable with, in addition to having some spectacular scenery to delight in. The adrenaline is there for sure but there's very little chance of becoming overwhelmed.

That video makes me feel overwhelmed.

Simon lives with a serious heart condition.  I can't ever forget that. Tube feedings and medications don't ever let that happen. But that's very different that being confronted with mortality rates. I felt like I couldn't catch my breath (ironic comment here) and that it was too much. Too much to think about, to much to live with, too much as a parent to have to hold the possibility of my child's death so frikkin' close all the time.

It was a good to cry, a good reopening of that room that I don't live in but always know is a part of my 'home'. A fitting way to start off the Holy of Holies. Tomorrow at sundown begins Yom Kippur. A time when I believe the veil between the material world and the spirit is thin. A fine time to feel raw and in touch with that which is larger than myself. I'll leave the door to that room open for right now; let in some air and light.

Hopefully on Sunday, I'll be able to close it again, and as the door shuts with a gentle click, I will pick up my paddle and continue on down the river.

Days of Awe

Last Wednesday night began the Rosh Hashana or the Jewish new year. It also marks what known as the Days of Awe. That time between the starting of the near year and the holy of holies, Yom Kippur. It's also known as the day of Atonement but I choose to mark it in other ways besides atoning. It is about marking a beginning with intention, purity, and grace. Looking both forward and back with clarity. Feeling rooted and leaving what needs to be left behind. It's less about sins and atonement as my rabbis would have had me believe.

Don't get me started.

The point is that here at the Fitch-Jenett household the Days of Awe actually started almost a week earlier and I am still trying to take it all in.

And I feel a little overwhelmed.

Numbers. Left ventricles. Reserves. Coming winters. Appointments or lack thereof. Cross country trips. High Holy Days. Services.

Simon seems to be doing so well. His cardiology visit was amazing and his BNP coming back so low. What does it all mean? Inquiring minds want to know.

Truth is....there are so many truths and some are easily understood and some remain complex and contradictory.

Simon's heart is getting stronger. His numbers and echo cardiogram tell us that. It's a great place to be right now and certainly as we head into another winter. It's also a great place to be given where we've come from (August 08' through November '08 posts attest to this) and it's a great place to be given where we think we're going- Simon will be turning 3 this year and aging out of his early intervention program. This means that we need to think about a regular pre-school for him.

It also doesn't mean anything. Nothing at all.

I can hear the brows furrowing and quiet "huh?"'s

Simon's heart is getting stronger AND it's a muscle that has been severely damaged. It may get back to working well enough but will remain a muscle that went through some significant trauma and may or may not be susceptible to future trauma in ways in which we cannot prepare for or identify.  For example, there are kids that are on our cardiomyopathy listserve whose heart function was in the normal range for years. They were categorized as having "resolved" cardiomyopathy and then for whatever reason, their hearts began to "fail" again and even got to the point of needing transplants.

It just means that we don't ever get to say "he's cured" or "Whew, than goodness we're be done with that" or "glad that's over".

Nope (as Simon likes to say with a very pronounced 'p').

We will live with this disease for the rest of our lives. AND, we will celebrate the strengthening and thickening, pray for continued improvement, and give thanks for each day that we laugh and learn and live.
We will breathe through, cry out, shy away, risk take, stumble on, clean up, get messy, feel fear, be frustrated and continue on. With hope each year for G'mar chatima tova, that our names will be sealed in the book of life.

In the meantime, here are photos of Simon over the last few weeks, including his first trip to the Monterey Bay Aquarium. It was awesome.

Getting ready for the return to the Mother ship

I crack myself up

And then we headed south to the Monterey Bay Aquarium

"Oh my Gosh Fish!"- this is actually what he was saying over and over.

High five-ing

Touching Rays

Sea Cucumbers are slimy!

Starfish!

Jelly's are cool!

Cabooos!

Coral is colorful!

It is one of the greatest things when Simon says "Anemone"

"So I came out of a giant clam right?"

Mama Angelfish

Mamaw SeaHorse

SeaHorse

Mamaw says "ride em' cowboy"

Snoozing on a waterbed

112

 
I will write more later but all I can muster right now is 112.

That's what Simon's BNP is. It measures how distressed the heart muscle is. It was 3900 almost exactly two years ago. 100 and under is 'normal'.

Simon's is 112

can't stop smiling

Miracle Worker

 
Simon had an awesome cardiology visit yesterday. His shortening fraction is up to 25% from 21% on the last visit and now falls within 1% of what is considered a "mild decrease in function". Dr. Rosenfeld heard no gallops or problems and instead heard a strong, slow heartbeat. The echo showed that his left ventricle is slightly measurably smaller than last time (4.0 versus 4.3, not sure what the units are) which is great news as we want his ventricle to get more "toned" and less "flabby". Best of all, we don't have to go back for 6 whole months! We've gone from a schedule of a visit every week when he was first released to twice a year. I don't know that I ever thought we'd get to this point, honestly.


When Laura called me to tell me the great news about Simon's Cardiology visit, my first thought was:"You did this. This is the fruit of your work, Laura."

So here's a shout out to the woman who has nursed a little boy back from the brink with love and patience and time and sweat and tears.  I'd venture to call her a miracleworker.

Your sacrifices of time and energy and basically everything that was "yours" are not in vain. Keeping on top of his feeding and making sure his meds happen on time and are the right dose, making sure he gets extra food if he barfs it up, taking him to his appointments, leaving social situations that you desperately want to stay in because there's a sick kid, wiping down the swings, practicing his words, talking to him non-stop, bringing food out to play with when it's time for a feed, driving him for naps when you think you might fall asleep at the wheel, reminding him "legs out", schlepping him to San Francisco for Feeding Therapy and Alameda for Speech Therapy and being home on time for OT and taking him to PIP twice a week and to Cardiology and GI and regular doctors appointments...

You have created the container he needed for his body to begin healing and nurtured the tender, weak spots left from his days in the ICU. He's not just physically healing, but he's catching up developmentally and it's 99% your doing.

This latest visit is the tangible proof of your work. There were doctors and nurses who thought we might never make it out of the hospital with a live child. But we did. And not only is that child alive, he is so HERE, so firmly on the Earth and so happy to be here that he stops people in his tracks with his light. You have been feeding his light for almost 2 years, Laura, and it's blindingly bright. I know you haven't done it completely alone, but you have done the lion's share.

I will never be able to express my gratitude for keeping our son alive and bringing him to the point he is at today. Our boy is thriving and it's because of you.
Thank you, Laura.

Your eternally grateful wife.

Listen to his Heart

 

I listened to Simon's heart last night for the first time in a while. It felt at once so strange to go and get the stethoscope, my cell phone (set on stopwatch) and stand over him like I used to do at least twice a day and then of course so dang familiar. I've done it more times than not in his 2+ years of life.

 10:00 at night and it's a lovely and low 59 beats per minute. There's the usual irregular rhythm but so much less irregular than it used to be.
Such a familiar sound, and I thought "how many parents get to listen to their child's heart like this?"  I do it now just because I can and because I want to remind myself of the steadiness. The steadiness of where we are in this moment, the steadiness of his strength, how he holds on to life now with almost an effortless firmness.  And, he's got such a firm hold, he really does. It's all relative but in this world of heart failure and tube feedings and multiple medications and therapies, Simon Lev has his heart steadily beating (with the occasional skipped beat or 'thrown pvc').

I was about to write 'his feet firmly planted' but I couldn't because of an incident yesterday.

Jaime and I headed out with Simon and Roxie for a short loop around the neighborhood. As we came to the playground just before our turn around spot to head home, we saw a friend with her two kids and decided to stop and say Hi.

Simon clambers down from the Jaime's back and head over to the climbing structure. This is a spiders web like structure with thick rope and two levels to climb up (at least 20 feet high). Up until now, and for the last 6 months, Simon has stepped up on to the black ball at the base of the structure but not ventured up into the rope area. He has been content to stay there for 10-30 minutes at a time, enjoying the feel of being off the ground but really no higher than 10 inches at the most, watching other kids climb and trying out the various perspectives that the four different bases offer.

And he's off. I'm not paying attention thinking that today is no different than other days (Silly Mommy) talking to Mary Beth as Jaime trails after Simon when I hear "um...Laura?"

I look over and there he is, climbing the rope web. He's about three feet off the ground with Jaime spotting him from behind.

And he keeps going.

And going.

And going.

Within minutes he has reached the top, at least 20 feet off the ground, and about to touch the very top of this climbing structure jabbering "very top, very top."

 Mary Beth and I are laughing speechless and Jaime is struggling to keep up with him.

This is the boy that was ready to walk months before he actually did (and then took off  down a long hallway), would only say Hi and Fsssshhhhh and now won't stop jabbering on ("we love each other very much" is his latest- 6 word sentence!!), and wouldn't risk more than one step up from being firmly planted on the ground (or run or jump- which he still won't do.)

He was climbing like a pro, planning steps up and down, and showing no fear at being so high.

I love him. I love his risk taking. I love how he moves with intention. I love how he lives with fear and courage in the same breath.

Amazingly the same has been true with his eating lately. He has let me put shallow spoonfuls of miso in his mouth. He has been working on sucking different things (beef jerky and edamame dipped in soup). I almost wanted to cry the other day when he let me spoon feed him 3 or 4 times. It felt like I was getting to do something that most parents take for granted- feed your child (sans pump and tubing). It was awesome (another one of his favorite words).

I missed out on that. Even getting to do it 4 times in 10 minutes was this incredible feeling of reclamation; reclaiming some of that innocence, those simple pleasures, traditional parenting that Jaime and I are missing so much of. And yet not missing that much of. Watching your kid climb all the way up that play structure for the first time- hoping that they don't fall and wondering how much to support or simply 'spot' them... that feels pretty typical. Pretty awesome. Pretty awesomely typical.

Yeah.

In other news Simon has now graduated to twice yearly GI visits (Holy Cow!!!) and is, in the words of Dr Gleghorn, "simply perfect."  He's finally on the growth chart for height (3% but on it at least) and even with a little weight loss, we are still on track. I will work hard on not having body dismorphia for my son- given that fattening him up was my main goal in life for so long- and trust that he is just fine. Or, I could just join Dr G in her assessment that he is in fact "simply perfect".

I totally agree.

Totally.

Look at him.

Pictoral Update

Some images to let you know what we've been up to..and down too. It is a roller coaster ride after all.

Our trip to the zoo was a real downer for Simon

"So we can get one of these at the gift shop right?"

Simon having a moment with an Owl (Grandma Owl? Jaime's Grandma)

Working on creating new fashion trends

The Uncles from NYC come for a visit

Strolling at FairyLand

Simon sure did love being with his Uncles

Matching Tongs

"Hey Ma! I don't think this is what Cece my speech therapist meant

when she said I should try some new words on"

"I make this look gooood"

Love pile with Zuri, Moses, and Simon Lev. That's about 75+ pounds of love

Two year Anniversarry.

Two years but more like a million from where we were.

It's not what it looks like...

Oh yeah, and we're a little famous.

http://www.sfbg.com/pixel_vision/2010/08/10/love-example-queer-family-takes-down-prop-8-one-letter-time

Love to all from Mr Shimmy La. Come by for a hug anytime.

Fallout

 
We're definitely feeling the effect of the anniversary of Simon getting sick. All weekend I very intentionally did not want to dwell on how hard things were 2 years ago. Laura started to cry as we drove out of town last Saturday, talking a bit about that day, and I could feel myself physically steeling myself against any of it. I just wanted to have a fun, light 24 hours with Laura and then Sunday have a sweet little visit to the hospital to say thank you to the staff and enjoy our block party.

But the feelings are there regardless of *when* I want to feel them. When I've had the opportunity to "have feelings" this week, I said, "I don't really want to talk about that day" and then proceed to burst into hysterical sobbing. As our process of grieving has proceeded, it's much longer between episodes of having the raw emotions we did at the beginning, but when they're up, it feels just like we're back to that time.

Last night Laura and I were trying to touch base after I did an annoying thing I have done for the last 8 years that mysteriously set her off into a rage. She's really struggling right now and it's coming out as really low patience/tolerance for anything extra.

I totally get it. Sitting on the couch, looking at her crumpled face, I was able to put some of it into words, "We're light years away from where we were 2 years ago, but we're nowhere I ever thought we'd be. What we're doing, what our lives are like, the ways it is hard, is beyond anything I could have imagined for us." This weekend I wanted to focus on the light years journey, but now it's time for us to continue the process of integrating what it really meant for us in the big picture.

Eyes brimming with tears, Laura told me that the feeding therapist watched Simon yesterday and said, "It's going to be a long road with him". The other little boys in Simon's feeding therapy group EAT, just not very much or only very specific types of food. Simon does not eat. Period. They're on the growth chart, but just low. Simon is not even on the growth chart. We're starting at zero where these kids are at 3 or 5 or maybe even 6 or 7 on a scale of one to ten. We have known it's not likely that he's going to magically start eating in 6 months, but to hear a professional articulate where we are on the scale is...sobering. It's just a concrete reminder that we're someplace entirely different than we could have ever imagined.

Laura said she realized, with great sadness, that she was going to be taking him to feeding therapy appointments for *years*. We are going to have to find a preschool for him in a year that will accommodate his feeding situation (special school? Paraprofessional provided by the school that we have to trust to do his feedings?). It will be years before we can travel without bringing a big ass commercial blender in our luggage or a case of nasty Pediasure. Years before we can leave the house without an ice pack for the food bag.

Yes, yes, I'm grateful and blessed and oh so happy that we are nowhere near the terror and horror and specter of death of two years ago and our lives are very charmed in a lot of ways But you know what?

This is fucking hard.

It's hard on us as parents and it's really hard on Laura (and somewhat on me) as an individual trying to lead a full and happy life and it's hard on us as spouses. We mostly take it day by day and it seems manageable. But every once in a while, when we lift our heads out of the water and see how far away land is, it's downright devastating.

So Far

 

It is two years to the day that Simon was diagnosed with Cardiomyopathy. It was two years ago today that we started our four month stay in the ICU at Children's Hospital Oakland. It was two years ago today that began the absolutely terrifying, most devastating time in my life when I learned what it truly means to be broken and in despair.

It was also two years ago today that I learned some of the deepest lessons in living in the moment, savoring joy (I mean truly savoring it) and allowing myself to be held, loved and completely cared for.

I remember each phase of this day two years ago; from Simon waking up and feeling like things were a little off, to hearing that first wheeze, to the ER doc telling us that it was not Pneumonia, to those last moments of holding him before handing him off to Dr. Williams so that she could intubate him and hold on to the little bit of life that he was holding so frailly on to.

This day two years ago sucked. It sucked hard.

And for sure there were moments that followed that sucked just as hard if not harder (e.g. like the weekend where we decided against having him listed for a heart transplant and thought that we were going to have to say goodbye or having a departure date in early November, getting within 48 hours of it and then having Simon catch another staph infection, go septic, and almost die).

But here we are, two years later, and I am in love with my son and my wife in ways that I couldn't even have imagined.

I am living a life where I laugh and I cry with a sweeter kind of abandon and even more than I already did...I don't take anything for granted.

There's no time to.

It's exhausting for sure but it sure as hell beats the alternative that Jaime and I were so close to. Like SO close right?

What an unbelievable ride.

And here we are, two years later. There is no mistaking that this time is so far from where we've been.
Jaime and I just returned from our first ever 24 hours away from Simon.

Thanks to our amazing family (blood and otherwise), Jaime and I took off on Saturday morning for a full 24 hours of jaimelaura time. We travelled to Napa, Yountville, Oakville, and St. Helena for a full day of adult recreation.

We got in and out of our car on a whim. We walked around a town or two, drank coffee, held hands, sat for a 2 hour lunch at Brix, and spent a completely restful night in a hotel where there were no syringes, no medications, no midnight wake-ups, and no crazy cute kid talking in his sleep.

There is no way that two years ago I could have imagined getting to the point where I felt safe enough leaving Simon with three different sets of people (Ginormous love-filled shout out to Anne & Eric, Dre & Joan, and Mamaw D & Grandpa Eddie) who covered his medications and tube feedings for a solid 24 hours.

There is no way that two years ago I could have imagined the amazing little boy that Simon has become. He says please and thank you. He greets complete strangers on the street with a wide smile and overly pronounced "Hellloooo". He has a beautiful arc of expressing sad or mad feelings and then let's us know when he is done, by saying "Oh-Tay". He now says "Shabbat Shalom" as well as "Hola" and "Adios" appropriately. He gets dirty. He wipes his nose on his sleeve. He leans his head all the way back when he's swinging.

He shines.
Two years ago today his light almost went out.
Today, I feel like there is no light that shines brighter.


And to you all, thank you so much for being right there. For whatever part of the ride you've joined us for, thank you. Though there have been times I couldn't do anything but cling to myself or Jaime, there has never been a time when we were completely alone. Thank you.

Simon's Story in a Nutshell (For New Readers)

Laura and I have been together since 2001 and always dreamed of building a family together. We had a big, old fashioned (non-legal) wedding in 2005 and about 2 years later, Laura started trying to get pregnant. We were extremely blessed and, despite having had her pelvis crushed by a truck in a motorcycle accident 11 years earlier, Laura got pregnant on the first try. Our son Simon was born on April 9, 2008 in a relatively quick and beautiful home birth.

Laura took some time off from her job as a school social worker to be with him at home and I returned to my job in public health after 7 weeks. We adjusted to our new lives with our new baby and happily carried on until August 1st. 

Friday, August 1, 2008 started out like any other day. By that evening, however, our 4 month- old son Simon was in a bed in the ICU at Children’s Hospital Oakland and by the next morning was on life support, fighting for his life.

Friday afternoon Laura brought Simon to have lunch with me at work. While they were there, we both noticed that he was breathing quickly. On their way home Laura and her father (who was visiting) heard a wheeze. Within 20 minutes we were at his pediatrician’s office for a quick assessment.  She observed him for 60 seconds and immediately sent us to the local ER with a possible diagnosis of pneumonia. Many test and a few hours later, he was diagnosed with acute congestive heart failure and transported to the Children’s Hospital Oakland emergency room via ambulance.

We spent a very long and scary night with Simon being monitored closely in the ICU. By 5 am the next morning, every breath Simon took was a full body effort, his shoulders coming almost all the way up to his ears and his belly sucking in so hard you could see all his ribs. Soon Dr. Sharon Williams, the attending on call that night, came in to talk to us. She was very kind but got right to the point. If we didn’t intubate within the next 15 minutes, his heart might give out.

Laura and I agreed to the procedure, handed Simon off and stumbled past the equipment tray and the assembled team, practically falling into the hallway, stricken with grief. The clerk on duty gently led us to the conference room nearby after finding us huddled on the floor in the hallway, hysterically crying. We spent the next few hours in that tiny room, crying, talking, calling our close friends and family and waiting for someone to tell us that he was stable on a ventilator.

A few hours later, we met Simon’s cardiologist, Dr. Howard Rosenfeld. (We later nicknamed him "Dr. Hunkypants).

He explained Simon’s condition, Cardiomyopathy, with incredible clarity and answered all our questions patiently and in simple language. He warned us that the vast majority of the time, they never find a cause for Cardiomyopathy and that about one-third of children recover completely, one-third stabilize but require medication and treatment for the rest of their lives and about one-third become so ill that they require a heart transplant and/or die.

Unfortunately, they had no way to predict which group Simon would fall into. They had him on a number of medications and we would just have to wait and see. He let us know that we could expect at least three weeks in the hospital. My jaw dropped when I heard how long we would be in this hell. Little did I know that Simon would stay in the ICU for just shy of four months.

In that first week, Simon had 13 lines, machines and tubes connected to him. You could barely see him through all the equipment.

He was able to breathe on his own after five days and slowly, the medical team began to reduce the number of things attached to him. We waited through good days and bad for true signs of improvement.

Nothing.

When the three-week mark came and went, we realized that Simon was not one of those kids who was just going to bounce back. I (Jaime) had to go back to work full time since I had limited Family Leave left. For almost four months my daily schedule looked like: wake up, go to the hospital, go to work, go straight to the hospital, go home and go to bed. Wake up the next day and start all over again.

Laura’s days looked a lot like mine but her work was helping Simon have the most normal experience possible in the midst of our own and other people’s pain and suffering. She held him all day long once he was free of the ventilator and eventually got to take him for walks around the hospital. Laura had planned to return to work in November, but as time went on it was clear that when and if Simon ever got out of the hospital, he was going to need full time care.

Throughout the next few months, Simon had the many, many ups and downs the doctors and nurses warned us about. He got two severe infections that almost cost him his life each time. He learned to turn pages in a book. He had a surgery to implant a Broviac line after his PICC line kept failing. He learned to roll over. He stopped eating by mouth and was fed only by a Nasogastric tube. He witnessed his mothers get legally married out in the courtyard. He had a spinal tap. Those months were such a bizarre mix of normal baby milestones and terror, incredibly bright moments and tragedy. I still say, “there’s nothing better than a good day in the ICU and nothing worse than a bad one.”

After about 6 weeks in the hospital, he got so sick that we had an  emergency visit with a transplant surgeon at Lucille Packard Children's Hospital.  After agonizing deliberation, we decided  not to list Simon for a heart transplant.  Our friends were with Simon in the hospital when we returned from Stanford and held us while we wept and talked about what our decision might mean for him and for our family and community. At that point, he was so ill we began to talk to our doctors about palliative care and started to think about having to say goodbye. I cannot begin to convey how horrible that weekend was, and yet the love and gentleness we received from our friends, family and medical staff, regardless of their personal opinions about transplants, kept us going and really, kept Simon going.

Monday morning, after a devastating weekend spent beginning to say goodbye to our sweet baby, we met with his Cardiologist, Dr. Rosenfeld. He made it very clear that he still had tricks up this sleeves and was not giving up on him. And he and all the medical staff were clear that no matter what their personal feelings about transplant, they 100% supported the decisions we were making for our son. The unwavering support, incredible medical care and undying optimism of our medical team and other staff at CHO kept us together and able to be present and loving for Simon.

Dr. Rosenfeld soon started him on a new drug, Carvedilol, and it looked like Simon was slowly, slowly beginning to improve. The rollercoaster ride continued, however and he managed to get septic the week we thought we were going home.  It was one of our darkest hours. Things had been spiraling downwards at work and I had a job interview the day Simon started to look very ill again. I made the impossible decision to leave the hospital that morning and go to my the interview (and eventually got the job) but that night due to a drug interaction with the antibiotics Simon was taking for his sepsis, he started bleeding internally.  When he began vomiting and crapping blood that night, they moved him out of the step-down unit and back into the ICU. To get so close to going home, only to have him look like death warmed over again was beyond terrible.

He slowly continued to stabilize and every week we thought that maybe, JUST maybe we would go home.  Finally, on November 20, 2008, Simon was released from the hospital.

He’s only been readmitted a few times, and none have been heart related!  He’s one of those miracle babies that has beaten the odds so far. Now that Simon is stable and home, they can tell us that they weren’t sure he would ever make it at all let alone doing as well as he is. Every time we see a doctor or nurse from the hospital when we’re out walking around in our neighborhood, their jaws drop in awe because of how well he looks. Almost 2 years later, those same staff members come outside to see Simon when we swing by to pick up medicine. We like to think it is not just due to the baked goods we plied everyone with during those months in the ICU.

Sure, Simon is globally delayed, meaning he is months behind in things like speech, problem solving, fine and gross motor skills and still does not eat by mouth. But man, does this kid know how to live! He greets new people with a beaming smile and a “Hi!”. He explores his world and gives hugs and kisses and bounces back in seconds after barfing his little guts out (which he does multiple times a day). People can’t tell that he’s sick so we have perfected our Cardiomyopathy “elevator speech”.

“This is Simon. He has a severe heart condition called Cardiomyopathy. We have to be really careful about germs because he can get really sick really easily, so that why we: have to go/keep our kid away from yours/wipe down the swings. He doesn’t eat by mouth because he was really sick when he was little and didn’t learn how to eat so that’s why he: won’t eat the treat you’re so generously offering/has that funny thing sticking out of his belly/is attached to tubing which is attached to a backpack that I’m wearing/ puked all over the place.”

We follow it with a big smile. Seems to work so far.

We hope that you follow us along on our adventures...

A Wee Bit Gloomy

 
There was a time that I actively sorted through my iPod for songs that would be appropriate at Simon's funeral. A time when I would think about what I would say and who would be there and where it would be held.  I did it because there was a real possiblity it would need to happen.

I haven't thought about much of that for a long time, but yesterday, on my way to work , this song came up on my iPod  (you have to listen to it for full effect) and I sobbed for about 3 miles, thinking about how appropriate it would be for his funeral.

I don't know exactly why I'm there right now. The 2 year anniversary of Simon getting sick is coming up (August 1). A Mom on our listserv wrote in passing that her child got sick at 4 months old (Simon's age when he got sick), seemed stable on meds for a few years and then had to have a heart transplant at 3 1/2 years old. A father on our listserv who just lost his son recently just posted about visiting his grave on Memorial Day.

It almost doesn't matter why it's up because it's actually always there, right there, in the background. Death seems further away these days, but she's still there.

Everything is fine at our house.  Simon seems great (really tired, but so are we, so maybe it's a mild bug). 

Sometimes this piece comes sneaking in when everything is quiet.  I don't try to fight it, I just try to ride the hard feelings and it often ends up feeling cathartic.  When I told Laura about it last night she just said, "it's a lot closer for us.  We've been really, really close to death for a while now. We just live with it in a way other people don't."  I guess my illusion about permanence and immortality and bad things never happening has been washed away by the waves of terror we have lived through.  It's actually not as terrible as it sounds.  It's just reality. 

That said, I *do* find myself going to catastrophic thinking much more easily.  Yesterday I was convinced Laura had died in a car crash and Simon was in a hospital somewhere when I couldn't get in touch with her until 4:30 p.m..  I sat in a meeting trying to not hyperventialte and panic and think reasonably as the clock kept ticking and I still hadn't gotten a response to my calls and text messages.

I've had crazy thoughts like that before Simon got sick, but it usually took a lot longer to get there and they were a lot less realistic.  I've had to rewrite my whole life in 5 minutes a few times before (a few dicey moment's in Simon's birth, Laura's head injury, Simon's diagnosis, deciding against transplant) and it's almost second nature now.  It's not a very useful habit, however.

 I'm gonna work on that.

Looking forward to a beautiful weekend and hopefully lots of sweet cuddle time with all my creatures.

P.S. We're trying to rule out Cardiomyopathy as the cause for some distressing symptoms our dog is having.  Wish I were kidding.  Hoping it's a thyroid issue.  We really can't have creatures of 2 different species on the same meds in the same house. That would just be laughable.

Speechless

Last night something happened that rendered me completely speechless.  For those of you that know me (Jaime) at all, you know that that's sayin' something.

A few months ago, I wrote a post that included a letter I wrote to a local family about why their "Yes on Prop 8" (anti-gay marriage initiative) sticker was so hurtful.

I got a response. 

Careful, you'll catch flies with that open mouth.

The response wasn't from the family I sent it to. It was from the mother of one of the teens at Camp Taylor, the cardiac camp we went to with Simon. She sent me an email last night. I'll let her words speak for themselves:

Jaime:

You may not remember me but I was a counselor at Family Camp last weekend. My daughter is a mentor [an older kid with heart disease who is a Camp Taylor veteran and essentially a counselor] . She got me hooked to your blog about your family. I wanted to write to you about your blog titled "A Letter to my local homophobe"
 Your letter was written to me. Now I don't have the mini van or Catholic sticker but I am a Christian who had the Yes Prop 8 sign in my yard. I believe some people are born gay and I never had a problem with gay families adopting children. For some reason I didn't want you to have the legal rights to marriage. I always felt that marriage was an agreement between a husband, wife and God. After meeting you two and reading your blogs I'm so sorry for my stupidity. I saw the love you and Laura shared with each other and Simon. As a fellow heart mother I know whats it's like to have a child fighting for their life. Why would I or should I deny you or Simon the same rights as me.

So please accept my apology for creating fear to others and thank you for your postings. Sometimes as Christians we think we deserve more then others. You deserve everything that I have. Please keep up blogging.

Oh, tell Laura I'm voting for her as the new Camp Fire Director. Not that we have one but we should. She was awesome leading songs at camp.

God Bless your family
 
When the tears cleared, I wrote her a VERY heartfelt thank you. 

Wow.
 
Okay, on a lighter note...
Simon can now say about a zillion words, including "bumblebee" and can ride unicorns.
 
Video of Simon singing "Bringing Home a Baby Bumblebee":
http://www.youtube.com/watch?v=TuY0hNqAqgw
 
Riding the mythical unicorn at Mamaw and Grandpa Eddie's house