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

Stars Aligned

I can't write much now but wanted to get some photos up to show you what we've been up to the last couple of days...starting with Mother's Day

That's Simon with his Mamaw and piece of Bacon (and Cinnamon toast remnants on his face)

That's a piece of Steak

A Snap Pea

Double Fisted with Yogurt Pretzels

A single Chocolate covered pretzel

Working on a pickle

Drinking some water

Some peanut butter

A flower and some beef jerky

Some Vietnamese Soup

And topping it all off with some of PopPop's birthday cake

Thank you and Good night.

Craptastic!

Right out of CSI: Oakland. Simon has a rough night on Wednesday, not handling his overnight feed, retching and barfing every hour and a half. We bring him into bed with us 'round midnight so as to be able to comfort him. Even through my sinus medication haze, I am still painfully aware of how crappy my little man is feeling.


I have no idea how crappy though until I wake up. Jaime has just lef to go to the gym, and it's barely 6am when once again, the little man starts sqauking and waking uncomfortably up. I turn over to discover that he is swimming in his own crap. Liquid poop all over the bed, all over Simon, all over me.

A blow out like I have not seen before. The bed resembles some awful tv show crime scene only now I can truly understand why they're alwasy wearing masks and gloves. Simon, to my dismay, has not yet grasped the defcon 1 situation and goes to rub his eyes and hair with his poop covered arm.

Never before have you seen two people stripped and in the shower so quick.

Poor guy. He's still trying to wake up and I have him soaped up and sputtering before he can even say "diyeeeee" (meaning 'done').

After the latex gloves are firmly on, the bed stripped, and three loads of laundry lined up, we are ready to start our morning.

After arriving late to our audiology appointment (to finish ruling out possible hearing loss), we are promptly sent back to the scheduling desk as they can't test someone that has fluid in his ears. Another ear infection?

Crap.


Riiiight. Simon has had a cold. I forgot to mention the snot given all of the other body fuids that I was dealing with this morning.

So we arrive early to our early intervention program a little worse for wear but I figure/hope that the singing and familiar play of PIP will settle the boy down.

We're not five minutes into getting settled there that I hear a low rumble come from Simon's stomach and then the tell tale flow and following stench.

I know why they call it the 'runs'. That's what we do to the bathroom where once again I am an ironic imitation of a scene from a movie where the baby has pooped and the Micheal Keaton (Mr Mom) or Eddie Murphy (Daddy Daycare) character is overwhelmed with the clean-up.

This is however, real life and while this technology may be in the near future, smell and touch are never a part of watching said scenes. Sight and sound maybe but even then you can't quite capture the very distinct odor that comes from a rotten baby gut or the special glint that flourescent lights can give off of a slippery poop covered tush.

After cleaning Simon, myself, and the bathroom floor and walls, we are ready to go back to the main play room and see if Simon can hang for some morning singing.

He cannot.

It's not even 10:00 are on our way home again. For sleep, for some Pedialyte and rest.

Five such poops and not really being able to keep down much food bring us to 4:00 and the pediatricians office. I ask her point blank Ass or ears? Which would she like to hear about first.

Turns out there is fluid in his ears but they don't look infected. He does likely have the stomach virus that's been going around.

Pedialyte for the next 24 hours it is.

Pedialyte, plus a rough night, plus a 6 hour nap today, plus no peeing made for a very worried mommy.

It's hard to feel the regualr concerns (is he dehydrated? getting enough fluids? sporting a fever?) and then worrying about the exrtas (will it be ok giving meds with just pedialyte? Is he retaining fluids? How will this interact with his diuretic meds? Do we need IV fluids? what's this one going to do to his heart? I really don't want the present of being in the hospital for my birthday.)

It doesn't help that in the last couple of days there has been all this talk on our Children's Cadiomyopathy listserve about kids that have needed heart transplants after not really showing any symptoms and that it's been children across the board of Cardiomyopathy and not jsut those cases of Hypertrophic Cardiomyopathy (where transplant occurs in greater numbers) versus Dilated Cardiomyopathy like Simon has.

Doesn't help at all.

Not one bit.

I don't ever want to go down that road again. That early September weekend was too hard. I don't know how I would do it again.

It's now 5:27pm on this Firday eve and Simon is singing the "Lulu the Clown' song. We will try for a rousing sing along of 'Shabbat Shalom', 4 ounces of Pediasure (not Pedialyte) and see how he does.

Here's to the good night that we all need.

 

And, it's all about perspective. 

It's not like anything stupendous happened today. 

No big check in the mail. No drastic change in our lives. 

But...we had a cardiology visit today. It was coming after a semi-rough weekend. Solo mom-ing it with Jaime away, two rough nights, and the beginnings of a cold for Simon. And we had a cardiology visit coming up. That means all those ‘maybes’ running around my head. From the mundane (maybe we'll get a parking spot close to the hospital this time), to the middle ground (maybe he'll be less combative during his echo and blood draw), to the grandiose (maybe this is the time when we'll hear about some drastic improvement in function).

It's just a little more exhausting than usual.

We check in and within 5 minutes are called for our EKG. Nice. Waiting sucks, even with Go Diego Go on the tv in the waiting room, not having to wait is always better than waiting.

Simon did so much better with the EKG than last time and it turned out that even with a size 2 tantrum (on a scale of 10) going on, his heart rate was the lowest that we've seen since we've been looking at heart rates. Pretty sweet.

He then greeted the Echo Tech by name (I really think he said ‘Sara’ as she walked in the door) and only worked a size 4 tantrum into his Echo with some nice quiet time in there as well. All in all the actual testing part of the appointment seemed to breeze by.

Again, no waiting back in the waiting room and after Simon stood on the scale like a big boy (instead of needing to lie down or sit on those baby scales) Rosenfeld was in our room within 10 minutes giving us the results.

So, his heart function isn't any different from last time but while the size of it hasn't changed, Simon has. He's clearly growing and his heart is not.

Take a minute and remember that Simon's heart got to be about 5 times the size it should have been when he was most symptomatic.

He's growing into his heart!! 

Yay!

While I was hoping to hear about some increase in his ejection or shortening fraction what HunkyPants said next was more than enough.

First, we had no blood draw.  I believe Rosenfeld's exact words were “BNP, ShmeeNP, look at him.”

and then...

"He's got the best energy of any of my patients with Cardiomyopathy. Why don't you come back in 4 months for your next appointment? He just looks so great."

 Remember it was only at the last visit that he said we should stretch our visits out from two months apart to three months. Now we're at 4 months?!! 

It's a nutty nutty mostly great but a little scary world. In my head “what do you mean you don't want to see my son who is in heart failure for 4 months?! What do they teach you at Harvard Med School?! This is where I feel the insanity that is cardiomyopathy. In the same breath he also said (to his med student) "there are kids with his exact heart function that are up on the floor (the ICU) dependent on the IV drug Milrinone." Aaah Milrinone. I remember you well. Thank you and may we never meet again.

Insane for sure, but it also keeps me present. Where Simon is at, with his heart, with his eating, with his gross motor, fine motor, speech, etc, etc...it's all where he's supposed to be in that given moment. There are things to be done, steps to be taken, things to be learned, challenges to be laid before him certainly, and...where we are, where I am as his mother/caretaker is right here. Each step is deliberate and I'm feeling more and more at peace with the pace.

There are times it's good to be a Taurus and the year of the Ox combined. 

And Simon is such a love. He still greets most strangers that pass him with an infectious "Hi!" and is able to move from his EKG and Echo with a lovely 'thank you' signed to each of his techs.  

I am just as excited about my son growing into the type of individual that can thank the person that just put him through an unpleasant but necessary procedure as I am about having my son grow into his enlarged and poorly beating-but-getting-stronger- heart. 

I am more often than not awed by him. I am more often than not awed by my family, immediate and extended. 

I'm feeling quite blessed right now. I took my son who is in heart failure for an EKG, Echo-cardiogram, and meeting with his Cardiac specialist and I feel blessed.

Check out the beginnings of one awesome breakdancer.  

http://www.youtube.com/watch?v=lPmLobkvINQ 

A Mix

 
(Jaime here)
Today I'm feeling the incredible bounty we have.  And the guilt I have about it.

This weekend was a mix.  In some ways it was so lovely- Saturday was a baby shower for a friend who is having twins and then Sunday we had brunch with friends and dinner with 3 other families.

AND Laura and I kept bumping heads this weekend, trying to figure out how to manage our time, get everything done, feel connected, meet Simon's increasing need to be active and take care of ourselves.  It's really, really hard to be a parent sometimes.  I feel guilty about saying that b/c we have it so good compared to so many other parents...and it's still hard.

I realized a few months ago that I have some messed up Puritan message in my head that because we have a child with special needs, I expect our lives to be very, very hard all the time and if things don't feel hard, I must have it too easy. When it's not hard, when we have support, when I feel "normal", I sometimes feel guilty.  I feel guilty that we have a date night every week and most of our friends who have kids are lucky if they get one every quarter.  I feel guilty that I get to go to a job I love and Laura has to stay home.  I feel guilty when I go do things for myself because it means Laura has to pick up the slack. I feel guilty that even though we are bringing in so much less money, I'm not feeling it as much as I think I should because we are getting help from our parents.   I totally recognize that guilt is a basically useless emotion. I don't feel shame.  I don't feel remorse.  I feel guilt.  I feel like I'm getting some privilege I shouldn't have because everyone doesn't get to have it. Ah, the perils of being a WASP.
I'm working on realizing that these advantages and resources we have help me and us be contributing members of society. I know it wouldn't serve anyone to have me be so completely overwhelmed by the challenges we're facing that I fall apart. I know this. And yet somehow it feels like I'm cheating by getting help.
Just a little nugget from the dark recesses of my mind :-)

On the bright side, Simon has now completed two full sentences. "Hi Mama" and "Bye Mama". He's mimicking almost every new word he hears, either by trying just the end of it or whispering or mouthing the beginning. It's really cute. "Umbrella" is "La". "Elmo" is "Mo". "Please" is a very cute flip of the tongue that sounds like "Pluh".

He and Laura went to the California Pacific Medical Center for an intake appointment at a Feeding Program there. They were very excited about him because he evidently is a perfect candidate. We're going to try some new things with him to lay down the neural pathways to connect mouth activity with getting full and go back in 3 weeks. This would be such a MAJOR step if we could get the boy eating, even just 10% of his total calories a day. It's hard to imagine the day that he would eat everything by mouth, but evidently anything is possible because we're where we are today.

Simon has been looking particularly dapper these days as you can see:

Birthday celebrations

Too tired to write. So much celebrating.

Heeey, welcome to my birthday party

Cake!

Getting ready to wear my new suit- Tom Cruise ain't got nothing on me

I like the disheveled look

But I'm more of a classic guy

Aaaw yeah

This is my real 'suit' though- Super Simon!!!

I got loads of birthday love for my Auntie Dre

And I have loads of love for you...just for you

I call that one my Hippie Magnum look.