A Decade

On October 22nd, Laura and I will have been married for a decade.  Ten years of wedded bliss. And trauma and intense personal growth and community building.

We decided to throw ourselves a party.  A big one. Like 100 people big.  Cuz...go big or go home, right?

That seemed like a great idea when I booked the location 4 months ago, before I stumbled into ye old pit of despair and before Laura herniated a disc in her neck (more about that soon, I'm sure, as she's scheduled for surgery a week from today).  About 3 weeks ago, I had a total and complete freak out. Like, "I don't care if we lose the deposit, I want to cancel the party" freak out.  An "it all feels like too much work and something will go wrong and it will all be ruined and I'm just going to end up disappointed and you're so grumpy from being in pain and on pain meds that I'm not even sure I can pull it together to LIKE you at our party so let's just call the party off RIGHT NOW", kind of freak out.

That was actually the night I figured out I was depressed, because one thing I know is that my life is better with Laura in it and I want the world to know that and we have an amazing community and I love food and I instantly fall head over heels again when Laura does her adorable faux goofy-but-actually-really-hot dance moves, so if I didn't want that, then something was seriously wrong.  It was a kind of useful freak out, as freak outs go.

So...we had the party.  And it. Was. Perfect.  Not disappointing.  Not even a tiny bit.  A few folks I really hoped would be there didn't make it and I hardly got to talk to the ones that did, but there was enough food to feed an army and bands of kids were running around wild and happy and the adults all looked relaxed and smiling and dancing (thank you Kris Woolery for the most bad ass playlist!).

One thing I hadn't really planned was clean up.  I figured I would just do it myself.  I know...it tells you a lot about my psychology. As the end of the evening approached I started looking around and realized how much work it was going to be.  Before I could start to get into work mode, our dear friend Saun-Toy grabbed Laura and I and the 10 or so friends left. She pulled us into a circle and proceeded to start the most beautiful shower of love and affirmation for us.  After folks gifted us with some of the most powerful and lovely words I have ever received, a group of 3 stayed and clean up was done in 20 minutes. I didn't have to ask for help.  It just...happened.

Our last friends walked out the door as my new favorite song came on - "What Do You Mean" by Justin Beiber (I  have no shame. I know I turn 40 in 3 months,but I'm a Belieber.  Whaddya gonna do?).  Laura grabbed me for a slow dance and I melted into a puddle of tears.  When I pulled it together I managed to squeak out "I just feel so SEEN.  It's the thing I wanted most growing up and it's really happening.  They really see us and what we're trying to do".  As Laura kissed me softly on the forehead and drew me in closer, I was filled with an overwhelming sense of contentment.  I haven't felt that feeling in...years.

As we close out an incredibly difficult decade, I am finding myself feeling so hopeful about the decade to come. During the silent meeting we had the morning of our party, an analogy came to me that summed up what I think this last decade was about.  Laura's grandmother was a sculptor and she described sculpting not as creating something, but taking away the excess so that the form could show itself.  I feel like what has happened over the last decade, starting with Laura's head injury a few months before our wedding and continuing through all that it's meant to be a parent of a medically fragile kid, have revealed both who we are as a couple and who I am as a person.  There were a few places where we got gouged too deeply, FOR SURE, but mostly I'm realizing that this decade was about clarifying who I am and what I stand for and what is important to me and the same for us as a couple and as a family.

My vision for the next decade is that life will smooth out those rough edges left from the first pass, sand away the deep gouges and buff us with gentle strokes until we shine.  Cuz, if life comes at me with another chisel anytime soon I'm going to have to kick some serious ass.  I'm serious.  Hand to hand combat.

Otis and Simon's Godmamas lookin SHARP!

There was another food and drink table besides this!

Me and my Papa and his too-cool-for-school pants

Kids!

Me and my Mama

The fabulous Cherry

Who says parents of kids with special needs can't have a good time?!

Parental units

SQUEEZE!

I don't even know what is happening with Laura's face here.  But Pete looks lovely!

Simon's Dunkle Mike!

Cousins Uma and Girija who travelled over an hour to be there!

Girls dancin!

Mama's Day, Our Way

Strong Families is an organization leading a national initiative to change the way people think, act and talk about families. As Mother's Day approaches, they have been doing a series of blog posts called, "Mama's Day, Our Way" to create a platform to "focus together on what we want and need so all families can thrive".

There was one post in the series that really spoke to me.  A woman named Nina described her ambivalence about becoming a mother.  As a mother who never imagined becoming a mother, I (Jaime) felt compelled to respond. Strong Families ended up publishing my response on their site. The link to my original post on their site is here but I'll also repost it below.


Nina,

I loved your post about why you’re not sure you could be a Mom. But there’s one part I have to disagree with. After listing out all the reasons you are apprehensive about parenthood, you say, “I realize that this list is a testament to how NOT ready I am to be a mother.” I couldn’t disagree more. I think every woman, mother or not, should have a list of all the reasons why it might not be a good idea to become a mother. The decision to parent is sheer insanity.

I grew up thinking that having kids was the last thing I ever wanted to do, for many of the reasons you listed. The idea that I would intentionally choose to have a narcissistic, demanding, messy human in my life, who would be completely dependent on me made me want to run from the room screaming, with my arms flapping, cartoon-style. I couldn’t think of anything I wanted less in my life.

Then I met my wife. She was sure she wanted kids. Like, really, really sure. And I was sure I wanted to be with her. Like, really, really sure. Which left me faced with the reality that I was probably going to become a parent some day.

After years together and hours of talking through why I thought parenting was a horrible idea, I realized I was most afraid of having to do it all myself. My parents divorced when I was 5 and had joint custody. While they did a great job raising me, watching my parents try to juggle their full lives and careers and me without another adult in the house looked…well…kind of miserable.

I decided I could get on board with this project if my wife would take the lead. And the understanding that if we had a kid and she died or left me to raise that child alone that I could kill her with my bare hands.

Laura got pregnant on the first try and it took almost all my energy not to show my panic. I had been sure I would have months to really, truly get into the idea of becoming a mother. Suddenly, the train was leaving the station. As Laura’s pregnancy progressed, every time I could feel the baby move, I would half-scream and nervously laugh and try not to think of the movie “Alien.” When Simon was born, I looked at his purple, squished, alien looking face and my first words were, “it’s alive.” Not “yea!” or “he’s beautiful.”

“It’s alive.” I was in complete shock that I was irrevocably, permanently, solidly a parent.

Every week that went by, I was a little less afraid and felt a little less like an imposter but it was slow going. Then, at four months old, Simon got critically ill. We spent months in the ICU and it became clear that if Simon ever did get out of the hospital, he would have a lifetime of health and developmental challenges. This was totally not what I had in mind when I said I’d take a shot at parenting.

Then, slowly, my worst nightmare began to take shape at work. While Simon was still in the hospital, my boss started turning up the pressure. I realized she was essentially asking me to choose between my career and my family. A core fear of mine that had kept me from wanting to be a parent was that I would not be able to prioritize my child over my work or that I would resent having to choose.

And then, I was forced to choose. To my complete shock, I chose my family. I quit my fast-track job and found something else that would work better for my life as a parent of a child with special needs. It’s not something I could have ever imagined I would do before Simon was born but when it came down to it, I did not have a moment of hesitation before making that decision. Something about that process solidified my love for Simon and my identity as a mother. It was a question answered.

My journey to becoming a mother was not without doubts and fears. It’s not the path I thought I would take and it doesn’t look at all like what I imagined. There are times that I long for my simpler, less harried, pre-mothering days. Some days I feel a furious envy of child-less women my age who go to parties and evening exercise classes and have disposable income.

I also feel incredible compassion for my sisters who are child-less by choice. I know they feel the pressure from society to get in the Mother box with the rest of us. This Mama’s Day I want to affirm all the women who choose not to become parents. I support your reasons no matter what they are.

To brave, thoughtful women like Nina who are afraid they won’t be able to handle the vulnerability and intensity of loving a child, I can only say, sometimes loving so much it hurts can break us so wide open that we find delicious pieces of ourselves we never knew were there.

The Devotion Project

Devotion: fact or state of being ardently dedicated and loyal.(def. Merriam Webster):

This weekend, Laura and I had a Skype session with a film maker named Tony Osso. He is a professional film maker who is doing a side project called "The Devotion Project" which is a series of short documentary portraits of LGBT couples, examining and celebrating their commitment and devotion. The first film in the series, "More Than Ever", won the Audience Award for Best Short at Newfest: the New York LGBT Film Festival. It's an incredibly sweet love story of two men in their mid-80's who have been together since meeting in World War 2. Watch it.

He's considering doing a piece on us.The exhibitionist in me is delighted at the prospect of us getting to tell our story on film. But I'm also a little nervous about being part of this project mostly because I don't want ever, in any aspect of my life, to be seen as an impostor. It’s sort of my core issue.

I'm afraid that our relationship to each other and to Simon will be somehow appear one-dimensional, airbrushed, too good-to-be-true and somehow holier-than-thou. This comes up sometimes with the blog. This weekend, someone affirmed me for the posts I occasionally write about how much I appreciate Laura. The person recounted a recent conversation with her wife where she said, “SEE? See what Jaime writes about Laura? I want you to do that for me!”

I was flattered and terrified. Yes, I write sweet nothings for Laura in public places and even say them to her face. But really, not that often. The reality is that I'm not a perfect, ever-adoring wife. Devoted? Yes. Consistently adoring? Um… I can safely say we are happily married. Most of the time.

Sometimes, though, we are rude to each other. (To be totally truthful, 90% of the time, it's me being rude to her). We raise our voices at Simon. We have days when we really don't like each other. Days when our most fervent desire is that our beloved take a long walk off a short pier. Sometimes I don't do something that needs to get done around the house because I know if I leave it long enough, Laura will do it. Laura would rather pluck out her own nose hairs than sweep the floor and some days that makes me want to leave a nasty, hairy, nail-clipping-filled dust bunny on her pillow. Sometimes Laura holds onto being mad longer than is reasonable and some days I freak out on her for just breathing my air. Sometimes she wants me to apologize and I know I owe her one but I just plain can’t, if I’m going to really mean it. So some days she just has to wait to get her well-deserved apology.

This is kind of what a devoted relationship looks like, right?

When you first commit to someone, when you have just pledged your undying devotion, or to do the best you can to show up every day, in front of lots of people or just a few, after a few weeks or a few months, something happens. The day comes when you realize that the thing your precious love just did that makes your blood pressure skyrocket is the thing you're going to be living with for the long haul. Or that you really WERE just a total asshole but you’re so mad about being called out on it that you can’t back down.  And they're going to call you out on that same thing for the next 30 years.

Around that time, you realize that this is just the beginning. You are building the landscape of your marriage.  The fights you have early are the fights you're going to have over the coming decades. There are going to be pits hidden over with foliage and little hidden treasures under piles of dog crap and sometimes a big ass landmine.  Sometimes you're going to get through peacefully, holding hands, saying "Well, wasn't that a lovely journey!" Sometimes you're going to get your eardrums burst and dirt in your eyes. 

The thing is, if you're going to make it to the finish line together, once the adrenaline gets reabsorbed, heart rates come down, and wounds are cleaned, someone has to reach their hand out to the other person.  And the other has to take it.

It’s that reaching out that demonstrates devotion to me. It’s the commitment to connect and re-connect, even when it’s loud and busy and you can barely find each other through the mountains of toys and hurt feelings and bills and pretty shiny other people. It’s going on the search for that love, with that person, again and again, that is that most holy act of ardent dedication and loyalty.

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.

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

Mystery Solved

Bilateral ear infections. That has been the culprit plaguing our sweet boy for the last few weeks. Such a simple, simple thing that has caused quite a few moments of terror. Laura took Simon to the pediatrician today (I keep wanting to say the Vet!) who took one look in his ears and decreed, "Yup, that one's infected. Yup, that one too". Oh, and he had nasty, nasty slime coming out of both eyes. It was quite lovely, really.
This may not be all of what has been making him sick, but it's likely what was causing the cough, runny nose, sore throat and fever. So, let's raise a glass to Amoxicillin, shall we and cross our fingers?

Interestingly, he showed no indication of any discomfort in his ears. I theorize that his reference point for pain is so off the charts that he doesn't even really register such a "minor" thing. I mean, when you've had a tube pulled out of your chest with just a little Versed, what's a little earache? Who knows, but that's my latest pop psychology.
Laura and her Mom reminisced about the chronic earaches/infections she had growing up (as did I). She hopes she's passing on some other things to him besides this nugget. Actually, two docs from the hospital saw Laura and Simon out together today and one of them said "I'm kind of freaked out right now about how much you guys look alike". So, he gets his good looks and his infection prone ears from her. Everyone's got to compromise, right?

All said, though, how typically toddler is it to get an ear infection? I'm a little shocked it's his first one. AND, it just reminds me that our margin is so thin. I think we almost had to take him to the ER because of an ear infection a few weeks ago. That's insane to me.

Laura just told me that the pediatrician today affirmed her for what we're doing with him. She said that we're doing an amazing job, both with the typical care and the non-typical care. She appreciated the ways we provide him with everything we can- from making sure that he gets as normal an experience as possible to keeping him as safe and healthy as we can. She remarked, "He's just thriving because of what you're doing".

I got tears in my eyes when Laura told me that. I often take it for granted- I can't imagine doing anything less for him. I was just telling Laura last night how totally in love with him I am. It's taken a while to get there (I likened having a newborn to an arranged marriage. "Um, nice to meet you...so, we're going to be together...forever?") but I love that boy more than I thought possible. And I think we're just getting started.

I'm so glad that Laura got seen for all that she does. And, yes, yes, Laura reminded me, for all that "we" do. I just feel like I do such a small fraction of what is needed to care for him. I know, I go to work every day and bring home a paycheck, but it feels easy by comparison in some ways.

I have hard days at work (I worked until 11 pm last night) but I get to flex my time and things are predictable for the most part. Laura has days when she gets NO breaks, when Simon doesn't nap, when I'm working late and he's puking and crying and she doesn't get to see another soul for a whole day. I can always go to the bathroom at work and take an extra 5 minutes and play a game of solitare on my iPod. She doesn't always have that option.

Yes, we're equals AND she's my hero. We are keeping him alive and thriving together, but she's the ox pulling the heavy load most of the time. I do love my little Taurus...

A little bleary eyed and still chipper. Miracle boy

All's well

All appears to be well in the Fitch-Jenett household.  Laura is off at a tattoo appointment, the baby is sleeping and I've been wreaking havoc in the kitchen.  

This past week was a little dramatic but it was all run-of-the-mill, normal life stuff and it just felt like nothing.  Monday I fell on our walkway while holding Simon.  He slept through the whole thing and I didn't get hurt, just a little sore.  Tuesday morning we had a weird, homophobic incident while getting coffee all together before I went to work. Then Wednesday morning while I was driving to work, I hit a sinkhole on the interstate, blew out my tire and had to cross 5 lanes of rush hour traffic to get to the shoulder.  

They all definitely rattled my nerves, but, honestly, it barely made a mark on my week, other than giving me good water cooler stories at work. I'm not sure if it's a perspective borne of experiencing true terror and drama, or if it's how I'd handle things  5 years ago, but it was nice not to have my week ruined by icky things. 

I was thinking about marriage the other day and came up with a somewhat horrible, but kind of good analogy.  I told Laura I thought being married was a little like being in a boxing ring.  You're in a contained space, with clear boundaries, but the edges are flexible and you can push on them and push off them and work your stuff out in there, knowing that you're going to stay in the ring.  If you take out the violent boxing stuff, it kind of works, right?  We decided to change it to a WWF wrestling ring and then Laura suggested Cage Fighting.  We had a good giggle thinking about us working out typical married struggles with crazy costumes, masks and stage names.  I'm not sure what our names would be...any suggestions?

Simon has been walking like a maniac (albeit assisted).  He mostly prefers to walk now, holding a finger or one of his walkers.  He still sort of walks like Frankenstein, but he's starting to bend his knees and walk like a human a little more. 

Here are some recent pics:

Simon, walking with his newly Domestically Partnered Godmamas

Looking happy as can be:

Unbelieveable allies

I know we have great friends. I know that our community is made up of very very special folk.

And

I am blown away.

So, Jaime had put it out there on Facebook that she had just filed official adoption papers for Simon and had commented on how asinine, let me repeat, ASININE, it is that she has to pay $700 dollars and go through a home visit and court appearance to adopt her own child. I can't even begin to say how offended I am by the process that even though Jaime and I were domestic partners long before we had Simon (married even in the state of CA) we still have to have a social worker come to our home, check us out, requiring four character references, and $700 dollars (and that's only because we are doing it ourselves and not hiring a lawyer saving us hours of busy work and thousands of dollars) to have the rest of the country recognize Jaime as Simon's mother.

That's right. If we left the state and (poo poo) something happened to me and/or Simon and I at the same time, Jaime might not be allowed to see us in the hospital, make decisions and/or automatically be given Simon to care for. Not to mention if (poo poo) something happened to Jaime Simon would not be eligible for Jaime's Social Security benefits because she is not seen as his mother on a federal level.
But enough about that....

So Jaime has put it out on facebook so folks could be happy for us in her finally becoming a true "parent" to Simon (please read that with extreme sarcasm). About a week later a letter comes to us in the mail from our good friends Daniel and Katie (dear friends from Jaime's stint in North Carolina at Grad School). They are not lottery winners. They are not independently wealthy. They are in fact both students (PhD and MD respectively) AND have a new baby themselves. Not rolling in it.

In the envelope is a beautiful picture of themselves (Eli the kid is quite a looker), a lovely card with pears on it, and......a check for $100 that we are required to put towards Simon's adoption fees. They "will not take it back" and if we are too proud (which we are not) to cash it for Simon's fees we should please donate it to a worthy marriage equality organization.

I was rendered speechless with a heart that threatened to burst with love and pride in our amazing friends and their very very powerful ally action. Who does that sort of thing...so personal, so political, so out of the blue, so loving, so righteous (in the literal and 70's slang sense of the word)?

Our friends do that. That's who.
It felt incredible. We are soooooo blessed.

Oh yeah, and we have our home visit this coming Wednesday. Any one want to dog-sit our psycho pooch? Jaime may be a perfectly acceptable 2nd parent. I don't think Roxie would make that good of an impression.


Love to all.

LF

Simon's beautiful beating heart

It's hot today.
During the afternoon we (meaning Simon) stripped down to just a diaper and spent most of the post nap afternoon hanging out as such. At one point Simon is across from me playing with his singing cube. He's standing at it and I can only see him from his belly button up.

I see my son's chest. I see the small amoeba looking scar from his broviac line. I see his blue varicose veins from who knows what. I see his beautiful chunky little baby/man boobs.

And I see his heart.

No, I have not developed x-ray vision (that would not be my super power of choice anyway) and no, Simon is not breathing or working so hard that I can see his chest heaving or heart beating.

But I see it. I see it in my mommy/minds eye. It's big and red and beating faster than it should but it's there. I see it. It fills his chest cavity. I see it working for him. It's vibrant and shiny and it's his heart. I love that little but too big organ.

I love it with all my heart.

Oh yeah, and I'm so frikkin' tired of vomit.

We go to see the GI doctor tomorrow and will hopefully have some sort of 'next step' for Simon in regards to his throwing up. It's not about weight gain anymore. The little chunker has more than enough to lose.

It's about what all the throwing up is doing to his poor esophagus. He's clearly conquered any sort of oral aversion, even his swallowing is getting better and better. Even while simply playing with food, a gag/heave won't deter him from bringing whatever it was that he was just playing with back to his mouth.
So what will it be. More medication. Are we at the Nissen stage?
(a nissen is a surgical procedure where a part of the stomach known as the gastric fundus is wrapped around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.)
What!? I don't know. More surgery?!! Hard to think about.

Otherwise he's doing so well. He's put on more than enough weight. He's making great strides with food orally. He's pulling himself up on just about anything (including Roxie!) and he's starting to make new and exciting sounds (Fsshhhhh anyone?)
The other morning he actually pulled a book out and started turning pages on his own.

He is amazing. Doesn't let you forget it either.

Jaime here:
This weekend was so mixed for me. I was very grumpy for the first 2 days and then we had a great Monday with a BBQ with a bunch of friends. I was grumpy until I had an epiphany on Sunday evening.

This Memorial Day weekend was the 4th anniversary of Laura's traumatic brain injury.

The actual day is May 31st, but it was Memorial Day 4 years ago. Laura and I talked about my bad attitude Sunday night. I remembered that my predominant emotion about the accident, after the fear mostly subsided, was anger. I was so angry to have to be going through something so traumatic by myself.

It never occurred to me, prior to her accident, that her not being "present" was a possibility. I'd been so proud of myself for not picking another depressed substance abuser, as had often been my pattern. I had finally picked an incredibly present, caring, emotionally healthy woman, finally. And then, I had the most traumatic event of my life and she wasn't there for me.

Intellectually, obviously, I knew it wasn't her fault, but goddamn was I angry! Our friends were incredibly helpful, supportive and loving, but my root system was suddenly gone. My very best friend, the one I could tell anything, the one I could be vulnerable with, was M.I.A. And, not only was she not "present", she was helpless (for a while, anyway). She couldn't be left alone, she couldn't drive, she couldn't work and she had no affect. No anger or sadness, and also no interest in or excitement about anything. Oh yeah, and we were due to get married in 5 months. How romantic.

Laura slowly recovered, returning to work 9 months after the injury and was *mostly* back by a year post injury. Our wedding was amazing. Still, our first year of marriage, that was supposed to be this blissful, easy, fun year...in a word...sucked. I was traumatized, my wife was slightly depressed and frustrated and our power dynamic was all out of whack from me having to take care of her. It took me to the end of that year to realize how angry I was, about all of it.

I have mostly worked it out but evidently the emotions come back now and then to remind me how hard that year was. I often pretend that hard stuff is water off my ducky back, but really, some of it really sticks. As it should.

I say this all to say...on Sunday I realized why my experience with Simon's illness feels more bearable than I would have imagined. Because I have Laura at my side, 100% present and going through the same hell, in the same sort of way that I am. I felt SO alone when she had her head injury, but I don't think I've ever felt alone with Simon's illness. Part of it is our incredible network. (Thank you!!!)

But a very large part is that I have my roots back. We are two strong trees standing tall in the face of the absurd, roots touching beneath the ground, instead of one lonely, spindly, dazed sapling bent over looking at her life's love sticking out of the ground, parts going this way and that, in disarray.

Laura's love, support, listening ear, ability to express emotion and ability to be present has made the unbearable bearable. Unconditional love by a healthy person is seriously the best medicine. You should go out and get you some. Seriously.

G-tubes, Grace & Generosity

G-Tubes

Two steps forward, One step back.

It's been a week and a half now since Simon's G-tube surgery and we're slowly getting back to a familiar rhythm. We're still working on sleeping and comfort but otherwise we're doing really well.

Simon's sleep has been just about the worst that it's ever been with him waking up every 1.5-2 hours and taking a lot longer to get back to sleep. This is very different from the pre-surgery boy who would usually only wake twice and be back asleep in 5-10 minutes. Both Jaime and I are starting to hurt a little but I have to remember that it's not nearly as much as the little man who's still working on getting used to having a 2 inch shaft sticking out from his stomach. It breaks my heart to have him wake up wailing and there be just about nothing we can do for him other than affirm how sucky things are in the moment and wait for the right second to see if something will distract him (blinking lights and a rapid, soft bounce seem to be our number one tricks right now). It also seems to be discomfort and newness versus real pain since distraction is possible and almost has an immediate response.


Still, it's quite exhausting. He's still a champion when it comes to putting himself to sleep and for that I am so thankful. He can amuse himself in bed for almost half an hour before gracefully falling asleep. It's just the waking that seems to be hard. One of our meds has been known to bring on night terrors. He just had surgery. He's a little baby, so new to all this. Who knows what it is.


He is getting better about being in his body though. It's still not fun for him to be picked up simply by placing your hands under his armpits or trunk. We still need to support his rump (any excuse to feel that sweet little tushi right?) but he seems to be getting better about that day by day. We even managed some tummy (really knees and arms) time and he was showing me how close he is to understanding crawling and how it all can work for him, getting to shiny things placed just out of reach (wicked mommy).


Really it's the sleep thing that kicking my own tush. I must get better about napping when he naps but it all seems hopeless. Stick with me while I kvetch for a second- Simon's first nap is around 8:30 and I'm not ready to go back to sleep just yet- that ones out. Nap II is midday and unfortunately almost always split in two with a wake up that usually requires either patting or picking up before going back to sleep. Nap III is late in the afternoon and if I sleep that late will I be able to fall asleep in time to get some Zzzz's before the first wake up at night. Plus there's the eating thing, emailing thing, and taking care of some business thing that I feel compelled to do. I just haven't been able to make it work and up until two weeks ago I wasn't feeling too worse for wear. I am feeling worse for wear friends. Tired. So very tired.

I know today a big part of it was the 4 hour hospital visit that we had. Neither Simon nor I was enjoying it although Simon perked up for his time with HunkyPants and showed off his magnificent 'pulling up to standing' strength. HunkyPants was duly impressed. However his echo, which is usually a chill ritual was not, blood draws were several pokes in the making, and we had to wait for almost 45 minutes for our post surgery check up (nobody's fault- we were a squeeze in appt to start with- bad idea with a baby, never will I do another squeeze in appt). It was good that we saw Dr Su though since it turns out that Shimmy has a mild infection from the stitches that were placed around the stoma (incision into the belly) site. So, 10 days of anti-biotics, but nothing major and she said it looks relatively good.. Oh wait, did I mention that the anti-biotics need to be given every 6 hours. Every 6 hours around the clock. So we started at 4pm. That means that we're on for 10pm, and 4am, and again at 10am. Um, what was that middle one? Yeah 4am. So on the off chance that Shimmy is not waking up then, we have to wake up and give him meds. Niiice.

It just doesn't end.

Grace.

It looks like the minor strengthening of the ejection and shortening fractions from the last echo were not necessarily reader error. Simon's EJ went from 31% to 36% and his SF went from 14-16% to 18%. Nothing major but a (baby) step in the right direction. I don't really know what it means or how I feel about it. I am a little numb right now from exhaustion (holding Simon while they try and draw blood over and over again may only take 15 minutes total but it feels like a million years slowed down to a crawl). It's a good thing I know but I can't quite take it in. It's kind of like being given a gift of a hundred dollars but you only get one penny a week (or every three when you go see the Cardiologist.) I know we're getting the hundred dollars it just doesn't quite feel like it. It's the slowest Ti Chi exercise ever. I know that grace is moving us along, we are so blessed, but it's hard.

So now we're on to eating, our next big hurdle. By the end of the week Simon will be back to his post surgery rate of 100 cc's and hour (for a 180 cc dose) and we will just continue contracting his feed hoping that we can get the little man hungry and play with food. He's been taking a few squirts from a sippy cup lately in the evenings and it's completely heartening (hah) to watch him taste and swallow.
Slow and steady is key here. So many cardiac babies develop strong oral aversions and I want to approach this next hurdle more like a long suspension bridge. Slow steps, leaning neither too far to the left or right, moving forward not back. I'm a taurus. I can do this. Shoot, it took me months to even get to the point of 'going steady' with Jaime. We can do this.

Generosity
Last and in no way least is a deep thank you. For all the support, all the meals dropped off, all the visits that come to us instead of vice versa, all the reaching out over and over. I don't really have words for the gratitude. I have a humble blush that threatens often to border on shame but it's too good and necessary right now. Plus, I know somewhere deep that Jaime and I have had a good part in building what we're now reaping.

It's here that I need to do a special shout out to the Grandparents. To Mamaw & Pappy E, G'Pa and Grandma, and MM and PopPop... Jaime, Simon and I, have a silent thank you streaming to you non-stop. For all the ways that you have shown up throughout this whole venture. With overnights in the ICU, brownies that always have nuts, songs sung, books read, blankets & bedding bought, naps shared, breaks given, sushi delivered, safe places to let down, skin on skin for the little man, wallets opened, and of course your unrelenting tsunami of love and support for all four of us (Roxie has been right there benefiting along with us bipeds). We are connected now in ways even beyond blood and marriage. It's generational and woven and also spans time. I'm not even sure I can explain it. I only know that our family is incredible and great (not the "superduper" kind of great but the larger than one person, grand canyon, magnificence kind of great. That's how I think of our family.
Thank you.
Love to all

Laura

Hee Hee Hee

Simon had his first full on laughing session today. Laura and I were in the cafeteria with him and Laura made a funny, loud, high "Boop" noise, almost like an old computer. Simon grinned, stuck out his tongue and started to laugh. She started to combine it with Hide and Seek and he just laughed and laughed. We played this game for at least 20 minutes.

I've never seen Simon laugh. I've seen him chuckle. I've seen him smile (not much until this last week). I've heard him grunt/laugh/grimace when I've tried tickling him. But I've never seen him really laugh until tonight. It was glorious.

I had a long venting session tonight with Laura (poor thing's ears are probably bleeding). I had a 12 hour day yesterday and only saw Simon for a hour yesterday morning and then only for 30 minutes this morning before I had to go to work. I ranted about that a little. Then the hospital called tonight with something slightly concerning but really nothing major and I had a big adrenaline rush and got furious. We're so close to coming home and I will be SO pissed if something happens again.

I'm seriously at threshold. My mantra is "I'm doing the best I can. I'm doing the best I can. That's all I can do". I've been horrible to Laura the last 48 hours or so and feel terrible about it and then I go back to my mantra. Things have been a bit stressful at work. Back to the mantra. I can't do more than I can do. If it's not good enough, it's still all I can do. You can't get blood from a stone, especially when the stone's baby has been in the ICU for 15 weeks. Sometimes I can't believe *I'm* still alive. I can't believe that I'm happily married, even in the midst of all of this. This is the kind of stuff that breaks up marriages. We just have bumps here and there but we work it out quickly. It's pretty awesome.

Simon is turning out to be a really fun kid. I was afraid he'd be grumpy his whole life, but this last week has shown me what is possible. It's really exciting as his personality is emerging. Plus he's turning out to be such a dreamboat- I thought he was sort of scary looking for a while there when he was scary skinny and mad all the time :-)

We can't find out f****ing camera again so no pictures tonight. Here's for hoping the patron saint of cameras put it in a safe place that we're too wiped out to remember.

Hugs all around.

TGIF

Silver Linings

I honestly think optimism and pessimism are hardwired. I feel very lucky to, for whatever reason, almost always have a filter of seeing what is good in any situation. I am so grateful for that ability, especially now. I also think part of why my marriage to Laura works so well is that she has the same philosophy.

We realized that there are 2 silver linings to this most recent development. First, we are SO lucky that this infection presented before we went home. Everyone here has said that it's inevitable for a Broviac to get infected at some point, and that usually kids that go home with one end up presenting in the ER with a raging infection because it takes a few days for parents to notice something is wrong. So we caught this early. Also, even though it will be sort of crappy for Shimmy to have regular blood draws the old fashioned way, it's way better for us to have the Broviac removed than risking it getting infected again. So, Shimmy will go home with no IVs!

The second silver lining is so great. They have been holding Simon's feeds since last night because they want his gut to have a chance to chill out. Today he started getting really fussy and Laura stuck her finger in his mouth. He immediately chomped on it and started sucking. Laura asked for some Sweeties (sugar water) and he went crazy for it. One of the cardiologists was nearby and Laura's sister, Jen, asked her if we could try a bottle. They normally would have wanted to hold all his feeds because he's going to have his Broviac removed soon but she said we could try Pedialite. The kid sucked down 40 mLs! He has had a really major oral aversion for the last 8-9 weeks and the one thing we were pretty worried about in terms of going home was his lack of interest in eating orally (he has a tube that feeds him right now). He's been sucking on a pacifier all afternoon which is so crazy because he abruptly weaned himself a long time ago.

So, when we go home, we'll have an almost totally wireless kid and an eater!

They will put in a Subclavian central IV line tomorrow but for right now he has a good IV in his arm that they can use for his meds. Infectious Disease docs want them to wait as long as possible to reduce the chance of the infection not being totally killed and recolonizing the new central line.
Update: just had a great Celebration of Life dinner celebrating Laura's 12th anniversary of her near fatal motorcycle accident. We had 2 of our hospital friends plus 10 of our "Framily" come which was very sweet.

Simon had his Broviac removed without incident.

Also, my Mom had an incredible conversation/session with her friend Louisa Teisch who is a priestess of Oshun in the Yoruba tradition. Teisch said a lot of incredible things and clearly was "talking" to Simon. She really thinks he's going to make it and she is a very powerful oracle, so I'm going to go with that. She also said we all need to tell him, in our own ways, "We want you to live, we want you to live, we want you be here with us, please decide to stay.” It looks like he has, but he keeps clearly having to decide so let him know we want him to stay.

Simon and the ocean evidently have a connection, so if you have a chance, go to the ocean and send your blessings and requests for him. She also said 7 dimes are something important for him, so if you come, feel free to bring 7 dimes. Really, we're not trying to get our medical bills paid! She also said he is Yemaya's child.

He's on his 3rd bottle of Pedialite right now. Each one is 40 mLs and Laura joked that he's drinking a "40". We're pretty much always able to have a laugh over here, which is quite a blessing.

All seems well in bed 7 and hopefully this setback is actually going to end up being a boost in some way.

Over and out.

Simon Laughs!!

Simon had a pretty ok night last night. He had some trouble sleeping but was calm for most of the night. We think he’s really coming down off his drugs from the intubation and given the fact that they didn’t really wean him, it really was cold turkey for him. Friday was really rough, yesterday better and for most of today he was either sleeping or chillin’ in somebody’s arms. We’re really getting the transfer down so that moving from one person to another is not so traumatic. This means that he can spend most of the day being held. He’s getting better with his “recreational” time at the boob and I feel so great that he’s getting that time with me, plus some extra booby juice. I’m getting some skin to skin with him plus the prolactyn for keeping up my milk supply. Pumping sucks. Breastfeeding is wonderful. Pumping sucks.

Jaime has been getting some amazing smiles and this evening after Simon got dinner and transferred to Jaime’s lap we got a full on chuckle! Simon is loving his Mama right now.

We’re just trying to settle into some kind of long term rhythm as we come to the beginning of week 2. Certainly the first week was high energy and moving at an incredible pace with the onset of things, intubation, extubation and these last couple of days with detox and the getting rid of some lines (his arterial line came out today and they’ve said that most they can replace his jugular line with a PICC line (most likely to his inside elbow) tomorrow. Dr Saaba (the cardiologist on this weekend) said that after a patient gets to Simon's place of being somewhat stable but not nearly well enough to leave the hospital, that's when it can be most difficult for the family. I get it. It felt a lot like a sprint for the last week. Now we're in for the marathon and pacing is the key.
It's so funny to have the olympics on as all of this is going on. Sometimes with Simon sleeping in one of our laps we'll turn them on with the sound off and just watch some amazing (and bizarre) competitions. I've never really gotten into them before but watching the swimming has been a treat while the air pistol competition just confused me.

I think Jaime and I are doing really well in terms of taking care of each other, trying to get some sleep (even though it's so hard to go home at night it makes us that much stronger during the day), remembering to reach out and touch each other, get a little kiss in here and there, go for a walk, hold hands, and be our full sad, silly, irreverent, communicative selves.
Having our people "show up" in such consistent ways has truly helped. Thank you all so much for the visits, the messages, the food, the emails, txt messages, comments left here, yard work, doggie care, and all the other ways that we feel the love. We've known that we have great community but holy crap!! This is abundance. It's sometimes hard to accept all of it. Hard but impossible not to in this crazy crazy time.