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

Just like Cher, Madonna, and Sting

I don't even know where to start I'm so tired.

We are just home from Heart Camp (camp Taylor is for children living with heart disease and this was their family camp weekend). It was amazing. It was awesome. It was CAMP!! Ok, it was in a Hilton and we went to Great America one day, but still...we sang songs, we made friends, we played games and walked away with a memory book, email addresses, and some fabulous photographs that are attached to splendid memories.

Here's a recap:

We arrive on Friday afternoon to the Hilton hotel in Santa Clara. As we walk into the hotel lobby we are immediately welcomed by no less than five folk from Camp Taylor. We meet our mentor Sarah, the camp Dr (Double D) and three other staff/ counselors. By the time I finished shaking hands with people Simon has been in no less than three peoples arms and has given out numerous kisses and hugs. It took Jaime and I just a few moments longer to realize that we are in fact 'home' and among our 'people'. 

I leave to put our bags in the room. I'm not gone longer than 10 minutes but when I come back Simon has a circle of people surrounding him laughing and all knowing his name as though they've been friends for years. It's like he's back to a camp that he's been going to for years (many more than he's been alive) and it's the first day back and everyone is so glad to see each other after a long year apart. It's amazing. 

I can hardly catch my breath  and we're off for family photos and a crafts project making our family banner. Crafts are a little beyond Simon but he doesn't waste a minute (practically) running back to the lobby to shmooze some more with his new friends.

Jaime and I take turns following him around (a foretelling of how the rest of weekend would go) and then, once our banner is done, we all head up to the room to get ready for dinner.

As we're coming down in the elevator for dinner, I can tell that we're sharing the car with some fellow 'campers' and introduce myself. A few sentences into the introductions and scars are being shown, diagnoses shared and g-tube/g-tube scars are  pointed out. And this kid is 6! Later on in the weekend I had to pull this young man aside and tell him what a "totally cool thing it was to meet him and I could only hope that Simon would grow up to be half as totally awesome" as this young man was.

And this is how the weekend went on. 

Simon was one of the youngest kids there and the only one with his particular brand of heart disease but he fit in like a broviac to a central line, like a NG tube to a nostril...like a catheter to a.....you know what I mean.

We all did. We fit in like that. We met other parents and talked barf rags versus barf bags. We talked about being stay at home parents when there was hardly time to be at home given all the different appointments one had to get to. We talked about those first moments of diagnosis and the complete devastation that comes with performing CPR on your own child or having to hand them off to be ventilated wondering if you were ever going to hold them alive again as you did it.

And in each of those moments, with each of those parents, my family grew exponentially as did my heart. I am amazed again at the room there is for a heart to grow (in beautiful and strong ways) and let people in.

Saturday brought more fun in the sun (bless the inventors of the wicking cooling vest) as well headed across the parking lot to the Great America amusement park.

Simon rode on his first carousel, went down his first water slide, and met Snoopy (promptly sticking his fingers up the over-sized pooch's nose). 

What was so amazing (besides the call of "if you got a pacemaker..over here!" as we headed through the metal detectors) was the recognition anytime you came across other folks wearing the black Camp Taylor t-shirt. It went so beyond the 'we're at the same camp' small talk and moved right into this soft warm intimacy that comes so beautifully with a shared traumatic/survival experience. 

And Simon was once again on the go. Laughing, smiling, hugging like a hippy. He was also talking up a storm. He's on a verbal tear. He'll pick up and repeat words that he hears in conversation but then also whips out new ones that we're not sure where he's heard. Hello, armpit, awful, puppet show, airplane, chick, and the favorite of so many at camp this summer, Bullsh*t. The latter being said so clearly with such crisp enunciation.  He's almost got the two sentences  "This barfing is awful. It's some bullsh*t!"  This went over quite well with the teenage counselors at camp almost all of whom were at one point or another in Simon's barf boat.

That was another thing. Since Simon was one of the youngest campers there AND most of the staff were older teenagers and young adults living with heart conditions (other were siblings and/or friends) it was this incredible gift to see possible futures for my own little man. There were thin kids, thick kids, buff boys, gorgeous girls, jocks, arty, nerdy, make-up wearing, facial hair having, hooking up, going off to college, happy, happy, joyful, generous, mature beyond their years, young men and women.  

I could see it. Twelve or so years from now, Simon would be one of those mentors, welcoming new families to camp and telling them his story, showing off his scars, and sharing the love that comes from not just surviving but thriving through this life.

All too soon it was Sunday and we were getting ready to leave. Simon was having a pretty pukey day (more on that in the next post) and had already anointed some poor girl's brand new build-a-bear stuffy, another camper's shirt, and several different area rugs at the Hilton Santa Clara. 

(Jaime here)

The way the other kids, both heart campers and their siblings, reached out to Simon was incredible.At one point, Simon was hanging out near two older boys. One (who I think had some cognitive stuff going on) was freaking out about Simon being near him b/c he'd witnessed Simon throw up earlier. I totally understood but was sort of embarrassed and praying that he wasn't going to boot again near this kid. The other boy, Evan, was incredible. He was probably 8 or so and just immediately connected with Simon. He asked me if Simon had a g-tube and when I said yes, told me he'd had one and whipped up his shirt to show me his G-tube scar. He stuck out his hand to Simon and said, "Hi, I'm Evan. What's your name?" Simon, of course, didn't answer, but clearly got the message that he was being welcomed and looked up at Evan with a beaming smile. I warned him that Simon was kind of barfy. He answered with a smile, "oh, I don't care. My brother has nosebleeds all the time and I'm always covered with blood" and then held out his arms to take Simon into his lap. The other kid stared at him almost slack jawed.

Simon barfed on one little girl, Reyna, when he was on her lap and I was mortified. I couldn't quite tell from her reaction if she was totally freaked out or nonplussed as she was debating whether to go change her clothes. I apologized profusely and her older brother (maybe 12 years old) was so sweet about reassuring me that it was really all okay and was so gentle with Simon. Later I went up to their parents and said, "sorry my kid barfed on your kid" and Mom exclaimed, "Oh my gosh, it's become a badge of honor for Reyna! She's walking around proudly saying, Simon threw up on ME!". I had to bust out laughing. Only at heart camp, right?

 (Laura)

Jaime and I were feeling the embarrassment of Simon's marking but getting only true 'it's ok we've all been there' smiles and support. It just meant that as we're getting ready to leave, even more emotions got churned up so that by the time we're at the Goodbye/Testimonial gathering, we're already feeling pretty fahklempt.

As we were waiting to get started, another workshop was running late and some of the assistant counselors were leading songs. As they stumbled through a classic, forgetting the words, a loud voice rang out from the back of the room. I was wondering who was singing so loudly, clearly taking the lead where the assistant counselors were stumbling. It was ME!! Without even thinking about it I was falling so easily back into being a 'camp leader' and within moments I was being called up the stage to lead another song as we waited for the rest of the group to come together. 

There I was (like I hadn't been in years) taking a hundred people through 'building a rainstorm' and then through several rousing rounds of "Down by the Bay." It felt like heaven to be back at camp like that and touch on the well of song leading skills that rarely gets dipped into these days. That was the 'camp' moment for me. 

It was an incredible weekend with a most incredible unexpected ending.

So...we're all standing around the lobby, folks are departing, goodbyes are being said, emails exchanged, etc etc and Jaime and I are standing with Simon figuring out our game plan for leaving. Jaime is holding Simon and I am standing right next to her when all of a sudden we feel two arms come around us and squeeze us together in an all-enveloping hug.

It's "Nana". Nana and Papa are the camp names for the elders of the camp (Father and Step-mother to Kim who's the founder/director). We've shared a little time together over the weekend (Simon and Papa shared kisses earlier in day) but nothing extraordinary so we're wondering what's coming.

With tears in her eyes, Nana begins to tell us how she is LDS (Mormon) and that there are at least 10 other LDS folk at camp that are as well, including the founder. She continued on saying how happy she was that we were here and sharing our family with hers. She wanted us to know in no uncertain terms that she was not a supporter of Prop 8 and that there were many other Californian members of the church that did not support Prop 8 and recognized and celebrated our family. The whole time she was talking to us, holding all three of us tight, Jaime and I are just looking at each other, then her, then back to each other eyes wide open.  It wasn't quite shock since all weekend there were these wonderful moments of recognition and familiarity but it certainly was unexpected and seemingly a little out of context. 

(She didn't need to do that. She made a point of sharing that with us. Again,...amazing.) 

It wasn't until Jaime and I were debriefing a few minutes later that we remembered that not only were we the only gay family there but we certainly weren't the gay family in the corner type either. It was the first time in a long time that I had been the only 'homo' in the room and was both aware and not of the impact that our family might have been making.  I had been leading songs in front of the whole camp, Jaime had been networking up a storm from the moment we arrived. 

 And Simon....well Simon had been doing his Simon thing all weekend long. Hence the title of this post.

Example given: As they are handing out folders for each family at the closing ceremony families are being called up to receive them by last name "The Burton family....the Smith family....the Jameson family," and then I hear it. Alone. Just one word..."Simon".  He's like a frikkin' celebrity. He just needs one name to 

rule us all.

Simon.   

Nuff said.

Some photos from the weekend.

This was taken 5 minutes after we arrived. It only got better.

First Morning at Camp. Already Simon's got fans.

At Great America. Simon's first water slide.

 

With all the Heart Campers and their siblings

Simon and camp director Kim. He knows where his bread is buttered.

Jaime and Simon talking about the politics of Great America

Um...what am I supposed to do with this?

Simon and one of his ladies- Jocelyn

C'mon guys let's GO!!!!

His first summer romance with Riley

Getting ready for the Hoe Down

With his new Heart dolly

Another one of his ladies Reyna (the poor girl he barfed on)

If you want to see all the pics from the weekend go here :

http://www.facebook.com/album.php?aid=4166&id=100001158187154&l=b3c6845857 

Father's Day

 
Here's a belated love note to the fathers in our lives. First a shout out to our Dads (Bernie, Bruce and Ed), without whom we would be poorer, less well fed, less loved and have a less loved child. Thank you for all the ways you have been incredible Dads to us.

The next part...
I've been thinking a lot about our sperm donor, Mike, this Father's Day and I want to give a shout out to him. I do this at the risk of confusing a lot of folks. I know a lot of lesbian parents who have used sperm donors to become parents have to or choose to draw very hard lines in the sand about their child not having a father. I can respect that. However, I am clear that Simon has a biological father and we set it up that way on purpose.

Without our friend Mike offering to become the biological father for our child, Laura and I might not be parents. We certainly wouldn't be the parents of Simon Lev. I will be forever indebted to him for choosing to  be a biological father to a child he will never parent. Ironically, part of what allowed him to become the biological father to our child is that he was already a father and raising three children, two of whom he is biologically related to.

As we began our process of looking for known donors, the few men we approached had the same challenge: they all wanted to have children of their own but didn't have any yet and were struggling with the  dea of not being a father to first child they would help create. Laura and I completely understood this challenge and realized that our short list of possible donors was going to get even shorter. When Mike  offered to become our donor, I felt much more confident that things might actually work out because our child would not bring him across the threshold of "Father". He was already there and up to his ears in it!

I felt very strongly about having a known donor was so that Simon could know who his biological father is. I was not interested in an anonymous donor that our child could never contact and always wonder about. We considered "identity release" donors from a sperm bank, but that wasn't what I really wanted in my heart of hearts. I wanted Simon to have some kind of relationship with his biological father. I had a gut feeling that we would be able to figure out some other permutation of a biological father/biological child relationship what was not a "Dad/Kid" relationship in a traditional sense. There are all kinds of fathers in the world: biological fathers, Dads, good fathers, bad fathers, step-fathers, dead-beat Dads, donors, adoptive fathers, etc and I was pretty sure we would be able to create something that worked for all of us.
And we have.

We see Spunkle (Special-Uncle, dirty birds) Mike a few times a year and while he doesn't call Simon his child, we all refer to his children as Simon's half siblings. Mike's kids love seeing Simon and Mike's Mom keeps up with us on our blog and Facebook. Everyone is clear that he is not Simon's "Father" but we are all now connected to each other through this biological relationship that he and Simon have. I love it. I see it as more family and more people to love our delightful boy. It's confusing for people sometimes but we seem to all have it worked out.

I hadn't really thought much about Mike in the 4 months after Simon was born. However a few months after Simon got sick, I was suddenly struck almost to the ground realizing what Mike might be feeling. I can't imagine what it would be like to have a child that you are both connected to intimately and not at all, become critically ill. It's one thing to agree to be a donor for a kid that you know will be raised in a loving and caring home that is not your own, but another thing entirely to know that the child that has half your genetic material is in peril.

We haven't really ever talked about it with him, and we probably won't. But I know that he sent good thoughts and prayers just like everyone else in our life, and that's what we really needed.

As we mark Father's Day, I want to honor him for being such an incredible Dad to his own kids and for intentionally choosing to be a biological father for a child that he will never raise so that Laura and I can be mothers.

Mike recently pulled together a team of skilled construction workers that are going to help rebuild Haiti. When I learned about this, I wrote him this note:
"I'm really proud of you for the work you are doing to get to Haiti and the work you'll do when you get there. It's something I will tell Simon about when he gets old enough to understand. He comes from good people."

You *are* good people, Mike.

We make a damn good family.

2 steps forward 1 step back...sometimes the dance is no fun

 

Hot. Food.

Normally I really like those two things together. Don't get me wrong, I am huge fan of a good gazpacho but for some reason I more often drawn to hot rather than cold food.

But for the last few days those two things together are enough to make me tired  and sad and wondering if it'll ever feel like we're only going forward.

Simon does not do well with heat. We are discoverng that around 75 degrees is about his limit. Crying, whining, lethargy, and yes, projectile vomiting are his body's way of speaking his truth. Heat and heart failure do not go well together.

It was really interesting to learn why and was one of those "duh, right!' moments.

In short, when the heart is not working well, blood flow 'round the body is affected, including blood flow to the skin and extremities where we let out body heat when our core gets too hot.  This is one of those 'in your face' reminders that Simon's heart is not working well.

Sadly enough, the vomiting is just enough to take him way back in terms of his progress with eating. What comes before expulsion................? Nausea.

The nauseated signals are back.

The dramatic hand up to the forehead. The odd poking himself in the eye (that I can only imagine is an attempt to disassociate from the feeling with another chosen feeling), and the long since departed friend, vomitus maximus, that lends itself so many other fun activities including extra wardrobe changes, laundry and the surprised exclamations from strangers on the street and at local parks.

(Hardest are the louder exclamations from kids that while are completely understandable, are still hard to hear. Nobody likes a "Dang, that is nasty."
Nobody.)

I am sad. Those pictures of Simon with all those different foods...I loved those. I loved the feeling of progress. Loved it.

I really hope we get back there and as joyfull and light as those two steps forward felt, that one step back feels like it's taken with lead shoes.

Pictures to make you smile instead of sigh....oh wait that's me.

How can you not love this boy?!

He has special hypnotic powers

He's growing so fast. He barely fits in his baby doll's stroller.

Simon and Stella playing house. You can tell who's in charge here.

Kissing baby Nate's fingers with such delicacy.

Out to lunch with my twin Zach (Simon's mentor in true 'boy'dom)

Jaime having a peaceful moment with her little man.

Peaceful moment over.

(see fish taco innards on said little man's forehead.

More food in Mama's mouth about to burst out from laughter.)

All done.

I May Have Made A Mistake

 

I signed up for Facebook yesterday.

I was just perusing Jaime's account and wanted to check up on the Indian Brook summer camp 70th reunion. It's the camp that I went to as a child and then worked at for 14 years. It's the place that made so much of 'me' who I am. especially the parts that I really like.

There were all these posts of people that were talking about their time there and coming back for the reunion. I must have recognized or known at least 80% of the folk on there and those that I didn't were talking about things that I knew and loved. I got all twitchy and energized remembering that time in my life and the importance that place held.

There were fellow campers, fellow staff members, women that I had mentored, women that had mentored me, even a few ex-girlfriends on there as well.

I wanted to connect to that.

Without even thinking about it I opened up an account.

It was so easy. And then it started. I had friend requests and joined groups and was getting email notifications.  They were mostly from people that I'm in touch with regularly now anyway but then there started to be friend requests from folks that I haven't talked to in months or even years.

I'm not talking about hundreds but more than 30 and then it hit me.

I'm different.

I'm so different and I don't even know where to start telling people that.

I tell myself this story of how Facebook connections go and it's either just checking in, or, the random exclamations of the mundane or even remarkable,

AND

"wow, so great to hear from you. What have you been up to?"

I can't handle either right now.

And while I'm not deactivating my account right away, I can't do it. I don't live there anymore.

There's very little that's mundane in my day to day. There are regular occurrences for sure but each one is directly attached to my different life.

Our school program is an 'early intervention program'. Each meal is... well, a tube feeding not a meal. Each spit up, each barf, each runny nose, they're all attached to Simon's condition. His heart failure. Cardiomyopathy.

How do I let folks know that? That I am attached. I am umbilically corded to Simon and his heart that is still working too hard/dependent on drugs to keep him the happy good looking kid that you see in pictures.

How do I let folks that I'm reconnecting with know in a short sentence/ paragraph that my life is one of the lives that doesn't even enter in their thinking when they wonder "Oooh, I wonder what she's been up to?"

Do they even wonder at all? Maybe that's just another story I tell myself right now.

In general it's not a good time to dip my toes into a pool that I can't swim in but certainly not this week. Simon's been sick with some kinda crazy post-nasal drip. For most of us it's no fun, for Simon it's even worse given that he's a boy that doesn't swallow much more than saliva anyway. For that last 48+ hours he's been spontaneously  gagging and retching to the point of his eyes watering and face turning purple. This is alternated with some wicked coughing fits that are accompanied by a cry that can only be translated as "What?! What is this shit?! You cruel cruel world!!"

All day.

All night.

At least once every two hours but more like every 15 minutes. Sucks.

Simple math:

Very rough days and nights with Simon + reconnecting to a past and people from a million lifetimes ago= a truly messed up head/heart for Laura Fitch.

Jaime got the brunt of it last night when Simon was having a fit and I couldn't even be in the same room  as him. I did have a good cry on the couch though.

So where to go from here. I want to be connected to all those people and that place AND I don't think I could feel farther away from the person I was when I was last in touch.

AND I can't even imagine how to start sharing who I am now....especially on Facebook where it feels like for the most part, it's so surface.  Not really surface I guess but something so much faster and impersonal than what I think I can handle right now, with so many people. So very many.

How ironic from someone that used to stand up in front of hundreds of people leading camp songs/ workshops/and assemblies and now spends so much time solo (mit the little man) and wants connection.

Am I a wuss? I kinda feel like one. "Yeah, Laura Fitch was on Facebook for like a minute but she couldn't handle it."

Still, there's this guy to spend time with:

"Moms, I'm starting my own secret society"

"First order of business...more time with men for me!"  (please see next set of photos)

Somewhere there is a fundamentalist having a heart attack

"Sure I love Texas G'Pa, you eat alligators there right?"

"It's a Grandpa and PopPop Sandwich,

who wouldn't be happy to be the filling in that?"

A Letter to My Local Homophobe

 

I work in a relatively conservative county and leading up to the last election, pretty much the only "Yes on Proposition 8" (the ban on gay marriage) signs and stickers I saw were when I was in that county.  Most of them are gone, but there is one house I pass by when I take a walk on a break at work that has a sticker on one of their cars.  It breaks my heart every time because I think about our family and all the other families that don't have the same full legal standing as heterosexual families that live, work and play right next them.

Before Simon, it was mostly a political issue for me.  On principal I wanted me and all other queer people to have the the same rights and privileges as straight people.  However, when Simon was born, and especially when he got sick,  policies designed to prevent same sex families from having legal protections took on a whole new meaning for me.

I realized that in another state, as his non-biological mother, I could very easily have been denied leave from my job to be with him while he was critically ill in the hospital.  In another state, I wouldn't be allowed to adopt him. I could have been denied access to visit him in the hospital by hospital staff.  When Laura was forced to quit her job to take care of him, they could both have been without health insurance because they wouldn't be legally linked to me.  I realized, on a really visceral level, just how cruel and destructive these types of policies are and what they're really about.

I'm not hung up on the issue of marriage versus domestic partnership versus civil union.  What I am stuck on is this category of policy, that says same sex couples are inferior and do not deserve the same recognition under the eyes of the law.  I could totally survive if gay marriage doesn't pass in California. It feels like a luxury.  We are very, very lucky to live in a state that offers quite a few legal benefits to same sex couples.  But the Prop 8 campaign reinforced for me how many people really do harbor animosity towards families like mine and that they're trying (somewhat successfully) to shape policies that hurt us.

So, I walk past this house 3-4 times a week, and every time I see that sticker it hurts.  I can tell they have children by the toys in the yard and their huge passenger van. I can tell that they're Christian by their Catholic radio sticker.  And I can tell that they have some feelings about queer people.  So I did the best think I could think of.  I wrote them a letter introducing myself and left it in their mailbox.

Here it is:

Hello,

You don’t know me but I walk past your house 3-4 days a week on my break from work. Every time, I'm struck by your Yes on Prop 8 sticker. I'm guessing this may not be your intention, but every time I see your sticker, it feels like someone is standing in my face, yelling "I hate you and I hate your family”. I wanted to let you know what kind of an impact it has.

I thought the most constructive thing to do would be to take this opportunity to introduce myself. I'm guessing (maybe incorrectly) that you don't know any Gay, Lesbian, Bisexual or Transgender (LGBT) people and in particular LGBT parents. I have found that actually meeting or knowing about a real live person who is happy, healthy and well adjusted AND gay can sometimes change things for people who seem to feel the way your family does about people like me.
I can tell from your house that you have children. I am also a parent and the issue of Proposition 8 has taken on a whole new meaning for me since having my son, Simon.

I have known I was a lesbian since I was 17. When I came out to my family, they were distressed because they were very concerned for my safety. They knew that people who have been taught to be homophobic do and say terrible things to people like me. However, my entire family including my parents and grandparents, were also very clear that they loved me unconditionally and would support me in leading the happiest, healthiest, most fulfilling life I could live, even if I were gay. That meant more to me than probably anything in my life.

I met my wife, Laura, over 8 years ago through a mutual friend. We were good friends for some time before we fell in love. A year and a half later, when Laura asked me to marry her on the Ponte Neuf bridge in Paris with an antique diamond ring, I gleefully said yes. Our family and friends were thrilled and we had a large, beautiful wedding in Tilden Park, at the Brazil Building with over 120 family and friends.

Laura has known her whole life that she wanted to be a parent. I was a little more reserved about the idea, but after overcoming my fears that I would not be the kind of present, attentive parent I wanted to be, we moved forward with our process. A year and a half after we were married, Laura gave birth to our son, Simon.

Simon became gravely ill with a serious heart condition when he was almost four months old. He was in the ICU at Children’s Hospital Oakland for four months and nearly died numerous times. One of the things that sustained us as parents through that time was love. Love for each other, love for Simon and the love that so many other people showed us. Our doctors and nurses, friends of friends and relatives of friends prayed for us, sent us emails, gave us hugs, brought Simon toys and supported us as a family.

We were later shocked to learn that many of the people who were so kind to us in the hospital were evangelical Christians. They were able to treat us with kindness, love and compassion AND be Christian. They supported us as a family even though they may have had issues with us being gay, because they knew it was the truly good and kind thing to do. They did what Jesus would have done.
Which brings me to Proposition 8.

The only thing Proposition 8 and policies like it does is hurt families. It doesn't do anything to strengthen your family or those of any other straight people. It just hurts families like mine, especially families with children.

My being gay and being in a happy, healthy relationship doesn’t actually hurt other people. It won’t make your kids gay and it won’t make my kid gay. Anyone who has spent any amount of quality time with gay people knows this. Prop 8 isn’t going to make it any less likely that someone is gay or that gay people will create families together. Instead, it just makes us sad and feel scared that some day someone may hurt us or our families. And it makes the people that love us feel the same way. Fear and hurt are the opposite things that I would I hope loving Christian people like the ones that you seem to be, to bring to the world.

I am lucky enough to live in a state that has some policies that help me provide for and protect my family. I am the sole breadwinner right now because Simon is too medically fragile to be in day care so Laura stays home with him. In other states with policies that seek to deny LGBT people the basic privileges straight people have, I might have been denied the right to visit my own son in the hospital while he appeared to be dying or he might be denied health insurance through me. That is simply cruel.

Denying Gay, Lesbian, Bisexual and Transgender people the same privileges heterosexual people have doesn't actually help anyone. It just creates a culture in which people are fired, injured, killed and isolated for being gay. I know the goal of these types of policies is to somehow strengthen society but what they really do is divide us and hurt us. All of us. It hurts my parents when someone treats me badly for being gay and it will hurt my son when someone is cruel to his parents for being who they were born to be. It hurts me and I venture to say that in some ways, it also hurts you.

In the spirit of love, I want to reach out and invite you to learn about my family. We have a blog that we started at simonlev.blogspot.com that tells our story about living as a family with a critically ill child. You will probably laugh, you will probably cry and you may find that you come to see us as three of God's perfect creatures.

Jaime Jenett
jaimejenett@gmail.com
simonlev.blogspot.com

 I haven't heard from them and probably won't, but I sure feel better.

NOTE: We did get a response (although not from this particular family)

Written by:

Jaime