The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Thursday, August 1, 2013
Monday, July 22, 2013
The Hulk
Lately, I pretty much forget that Simon has extra stuff going on. Then, we have moments like tonight and I am reminded that we are doing "parenting plus".
He's been on a kick the last few days where about half the time he's talking, he's declaring, with great emphasis, and triggered by nothing apparent, "I'm ma-yad!" "I'm ang-a-ry!" I'm frus-trated!". We ask and ask, "Why are you angry? What happened? Are you angry about x,y,z?" He won't answer and looks even more mad that you're asking him about it. So we try a new tactic- "Yeah, I hear that you're mad" and nod sympathetically. Sometimes no matter what we do, it spins him into a fury.
This, as you can imagine, is somewhat maddening. Almost more so now that he's pretty reliable about communicating needs and wants. Bopping along and then hitting a pothole like this makes one a little...mental.
On our evening walk, our dog was a total jerkface and went bezerko on another dog. Laura got caught in the crossfire and was really pissed about it. (Rightfully so, I might add. I was pissed too Our dog can be a total asshole). About 30 minutes after we got home, Simon said, apropos of nothing, "Mommy is mad".
I decided to take the opportunity to work on answering direct questions. "Why is Mommy mad, Simon?" , I asked him. "Buffalo dancer!" he replied. I sighed and coached him every single step of the way to get him to say, "Mommy is mad because Roxie hurt her". As soon as I got the whole thing out (coaching practically every word, I tried to get him to do a quick repeat to cement the process. Total popcorn. "Roxie burped" "Roxie farted" "Roxie is a drummer" "Chicken dancer!" with his charming little impish smile on his face like it was a game.
I am not clear if he can't remember what happened, he can't figure out the process of pulling out the information to answer the question or if he's just fucking with me. Whatever the cause, I felt like this:
I was so mad I wanted to scream like a wild beast and throw something. Instead, I took a deep breath and tried to wipe the disappointed/irritated look off my face. It's so hard to know we may never know the answer to what the heck goes on in his brain. We're making progress toward more typical communication but I still find it so frustrating. And a little terrifying. I don't have any faith that if anyone hurts him or does something creepy that he'll be able to communicate about it. I don't generally walk through the world afraid of stuff like this, but he's out in the world more on his own and it's something I think about every once in a while. Ugh.
On a better note, Simon's Duncle Mike (Donor Uncle) and Auntie Virginia and his brother Daniel and sister Emily came up for a visit yesterday. We keep intending to get together every quarter, but we average more like twice a year. It's always sweet, but this time felt a little different.
Simon and his brother (who is 19) just went off by themselves and did brother things like this:
Then he played brother/sister games with Emily.
He got some good Duncle drumming time:
And we all got the thing this only child of an only child of an only child wants for her only child.
Family time.
I am more grateful every year that we chose to build our family the way we did. Thank you, Universe or whatever you want to call it, for putting Mike and Virginia and Daniel and Emily (and Ari, who wasn't there) in our paths.
We have created a more lovely family than I ever could have imagined.
Tuesday, July 16, 2013
That Mom part 3
There is that Mom. The one across the Bay that said goodbye to her 8 month old baby last night. There is also that mom, the one across the country in Florida who might have been holding out for some sense of justice or peace around her 17 year old son's murder but isn't getting any.
I am this mom. I am the mom that just dropped her 5 year old off at camp for the fourth week in a row and came home to pee laundry, a 3/4 built shed that needs to be finished, a kitchen that needs to be cleaned, medical supplies that need to be brought in from the stoop, and doctors and therapists to call for scheduling new and old appointments.
But all I can do is cry. My heart hurts for Michele who's daughter Cora is finally at peace. My heart hurts for Sybrina Fulton who did not get any justice and won't get to see Trayvon off for his first year of college, graduate, get married, have a kid etc. My heart hurts and my eyes won't stop showing it.
My head hurts too. I don't understand. I don't understand why some of us get to measure out blended food to be tube fed to our kids and some of us simply measure out grief and mourning. I get to stop at the right amount. Grief does not come with a set measure for each moment of the day.
Simon is growing and changing everyday. It is a privilege to get to watch him. It is also held sometimes in immense guilt.
Guilt for having the child that is doing better when we know so many other children that are in decline or are lost to disease and medical limitations.
It's guilt around having resources and access that other children and their families don't have. It's my whiteness and my middle class resources that keep Simon alive on some level that other children will not have and may or may not be shot, incarcerated, living in poverty/violence because of its absence.
None of it is fair or just. I don't know why I deserve it and other mothers don't. And I feel like there is nothing to do about it.
That's not completely true. I can drop off care packages to hospitals, I can attend rallies, sign petitions, facilitate support groups and write. But where I feel helpless is in the meta sense. I cannot find a cure for heart defects or disease. I cannot dismantle institutionalized racism and other oppressions. But I live with both every day. I've known about the latter for the last 25 years. I've known about and lived with the former for the last 5. They both take lives away. But not mine or my son's (so far). I live in privilege.
In this moment, Simon, Jaime, and I have the privilege of being "unaffected". We live a relatively asymptomatic life when it comes to these two. Yes, Simon is tube fed but he's going to get over that. His heart function is in the normal range. His developmental delays are shrinking in leaps and bounds. We could hear the helicopters last night but no windows were broken in our neighborhood. Simon wore his hoodie to camp this morning and I knew that no one at camp would think anything of it. We will continue to have excellent support from our school district, hospital, bank, places of employment, etc, etc. Our family is finally recognized by the federal government and we don't have to worry about voting rights and zoning or whether Simon will be allowed to be cared for and accepted into his family and community because of his ethnicity.
But more than anything, Simon is alive today. He will stay at camp until 3:30 and then go out for dinner with his two Moms and his dear friend Djaffar. He will eat as much as he can by mouth and then get the rest supplemented with a tube feeding. He will take his meds at night and hopefully make it to morning in his own bed...or he will climb into bed with us at 3:30 and I will groan for the lack of sleep that will come from having him plastered to me for the next three hours. Simon will wear his black hoodie and only be told how much it makes his blue eyes pop. He will begin to understand how handsome he is and hopefully be humbled by it. He will walk through doors that are held open for him, metaphorically as much as literally.
He will know that he is a white male in a world set up for white males and hopefully know when and how to use that piece of his identity to shed light on AND dismantle exclusivity and oppression.
He will continue to savor each and every day as it comes; with meds, with two moms, with whiteness, with connectivity, with mistakes made, with hard times, with lean times, with abundance, with all of it.
And I will be that mom. The one that gives thanks for having him do all those things. In the exact same moment I will never ever forget Michele and Sybrina and Cora and Trayvon and all those that have gone before and that will come after.
Some pictures of our days.
I think she loves me MM does!
and I love her too I do!
Shucking corn with Mamaw
I will eat you Mommy!
Love.
I am this mom. I am the mom that just dropped her 5 year old off at camp for the fourth week in a row and came home to pee laundry, a 3/4 built shed that needs to be finished, a kitchen that needs to be cleaned, medical supplies that need to be brought in from the stoop, and doctors and therapists to call for scheduling new and old appointments.
But all I can do is cry. My heart hurts for Michele who's daughter Cora is finally at peace. My heart hurts for Sybrina Fulton who did not get any justice and won't get to see Trayvon off for his first year of college, graduate, get married, have a kid etc. My heart hurts and my eyes won't stop showing it.
My head hurts too. I don't understand. I don't understand why some of us get to measure out blended food to be tube fed to our kids and some of us simply measure out grief and mourning. I get to stop at the right amount. Grief does not come with a set measure for each moment of the day.
Simon is growing and changing everyday. It is a privilege to get to watch him. It is also held sometimes in immense guilt.
Guilt for having the child that is doing better when we know so many other children that are in decline or are lost to disease and medical limitations.
It's guilt around having resources and access that other children and their families don't have. It's my whiteness and my middle class resources that keep Simon alive on some level that other children will not have and may or may not be shot, incarcerated, living in poverty/violence because of its absence.
None of it is fair or just. I don't know why I deserve it and other mothers don't. And I feel like there is nothing to do about it.
That's not completely true. I can drop off care packages to hospitals, I can attend rallies, sign petitions, facilitate support groups and write. But where I feel helpless is in the meta sense. I cannot find a cure for heart defects or disease. I cannot dismantle institutionalized racism and other oppressions. But I live with both every day. I've known about the latter for the last 25 years. I've known about and lived with the former for the last 5. They both take lives away. But not mine or my son's (so far). I live in privilege.
In this moment, Simon, Jaime, and I have the privilege of being "unaffected". We live a relatively asymptomatic life when it comes to these two. Yes, Simon is tube fed but he's going to get over that. His heart function is in the normal range. His developmental delays are shrinking in leaps and bounds. We could hear the helicopters last night but no windows were broken in our neighborhood. Simon wore his hoodie to camp this morning and I knew that no one at camp would think anything of it. We will continue to have excellent support from our school district, hospital, bank, places of employment, etc, etc. Our family is finally recognized by the federal government and we don't have to worry about voting rights and zoning or whether Simon will be allowed to be cared for and accepted into his family and community because of his ethnicity.
But more than anything, Simon is alive today. He will stay at camp until 3:30 and then go out for dinner with his two Moms and his dear friend Djaffar. He will eat as much as he can by mouth and then get the rest supplemented with a tube feeding. He will take his meds at night and hopefully make it to morning in his own bed...or he will climb into bed with us at 3:30 and I will groan for the lack of sleep that will come from having him plastered to me for the next three hours. Simon will wear his black hoodie and only be told how much it makes his blue eyes pop. He will begin to understand how handsome he is and hopefully be humbled by it. He will walk through doors that are held open for him, metaphorically as much as literally.
He will know that he is a white male in a world set up for white males and hopefully know when and how to use that piece of his identity to shed light on AND dismantle exclusivity and oppression.
He will continue to savor each and every day as it comes; with meds, with two moms, with whiteness, with connectivity, with mistakes made, with hard times, with lean times, with abundance, with all of it.
And I will be that mom. The one that gives thanks for having him do all those things. In the exact same moment I will never ever forget Michele and Sybrina and Cora and Trayvon and all those that have gone before and that will come after.
Some pictures of our days.
Sitting and Spinning with Levi!
I think she loves me MM does!
and I love her too I do!
Shucking corn with Mamaw
I will eat you Mommy!
Ok, Ok, I won't eat you. Just keep tickling me!
And this is how you relax like a Fitch
So much fun with MM and PopPop!
My blazer still fits
I make this look goooood.
Alameda Beach photo shoot- A boy, his Mic-Key button, and some angry birds underwear
We may have stopped horse back riding for the moment but there's always Mama!
Mmmmm Soup!
No where's the pork and shrimp! (please note the empty bowl!)
Love.
Friday, July 5, 2013
Commentary For the Times- Not So Much Shimmy But It's All Connected
A while ago a dear friend asked us to be guest writers on her blog. Jaime was able to contribute something but I'd been a little busy with Simon and chaplaincy and life. Last week with the Supreme Court handing down their decisions on Voters Rights, Native American sovereignty and of course Gay Marriage, I felt moved enough to stop doing pee laundry and write what was on my heart.
I submitted her my heart and waited. It wasn't so surprising a few days later when she let me know that my piece wasn't going to be published. I was so disappointed Not with her. I still have deep love for her and the work she is doing. My disappointment was for the larger picture that keeps us afraid of talking about this. Whether it's a perceived threat to our livelihood, our friends, or understanding the world they way we 'think' it is, we (white people) are still so afraid to really commit to unlearning racism, our own, the system's, and those closest to us.
So here it is. Here is what I wrote. Here is my heart and my story.
Part I.
Here I am sitting here feeling a
little nauseated. Most of it is from the yoga class I just took (getting back
to it after 6 months). But some of it (ok a lot of it) is from reading what is
going on out there in the world. Jaime and I have been waiting for the Supreme
Court to decide whether or not they, and subsequently the rest of the country,
will recognize our family. I have not been waiting with bated breath, since it
would be nice but, really I know my family. It’s strong like an ox and no one
can take that away from me. What did knock the wind out of me were the
decisions that were handed down regarding the Voting Rights Act and the Indian
Child Welfare Act. My heart hurts.
I’m angry and I’m scared.
I’m scared to start this
conversation because it means so much. I’m scared to come across as anything
other than the complete buffoon that I am. I’m scared to even seem like I have
an iota of understanding of this whole thing called Racism and race and
integration and justice. It’s so huge and so old and so powerful. So maybe if I
believe I have one millionth of an iota of understanding I can begin.
So here’s where I can begin. With a
story.
I was 16 when I had my first "OMG, the world is not the
way that I thought it was" moment.
I was a junior in High School and invited to attend a Conference that Mayor David Dinkins was sponsoring on 'Race Relations' in schools.
This was New York City so there were a few things to talk about. There were students from every High School in the city. Some were college-bound, some got their clothes from the lost and found. We were Gentiles and Jews, Muslims and everything else New York had to offer. We were all shades of NYC and I was so excited to be a part of a dialogue where unity and what the next generation had to offer was the focus.
I attended a workshop entitled "Violence in the Halls- more than just fist fights" and was surprised to find myself the only white person in the room.
Very quickly the conversation turned from introductions to deep sharing. Voices got raised, tears were flowing and hurt after hurt got named. Heads were nodding, hugs were given and there seemed to be a common understanding about how vicious fellow students, teachers, administrators, and other people's parents could be. Except by me.
I had nothing to add. So I just listened.
Apparently word got around that this particular workshop had gotten really heated and when we were done and opened up the double doors to our smaller room, there were people gathered around to see what had gone on. This included a number of reporters that were there to cover the conference for the Mayor's office.
I was a junior in High School and invited to attend a Conference that Mayor David Dinkins was sponsoring on 'Race Relations' in schools.
This was New York City so there were a few things to talk about. There were students from every High School in the city. Some were college-bound, some got their clothes from the lost and found. We were Gentiles and Jews, Muslims and everything else New York had to offer. We were all shades of NYC and I was so excited to be a part of a dialogue where unity and what the next generation had to offer was the focus.
I attended a workshop entitled "Violence in the Halls- more than just fist fights" and was surprised to find myself the only white person in the room.
Very quickly the conversation turned from introductions to deep sharing. Voices got raised, tears were flowing and hurt after hurt got named. Heads were nodding, hugs were given and there seemed to be a common understanding about how vicious fellow students, teachers, administrators, and other people's parents could be. Except by me.
I had nothing to add. So I just listened.
Apparently word got around that this particular workshop had gotten really heated and when we were done and opened up the double doors to our smaller room, there were people gathered around to see what had gone on. This included a number of reporters that were there to cover the conference for the Mayor's office.
I was ready to step aside and let folks who had actually spoken during the session share what had gone on when something significant happened.
Every single reporter (at least 4-5) made a beeline for me.
A microphone, a camera, and several notepads, all in my face to find out my take on what had happened, asking if I was "attacked" during the session. People had shared stories of violence and isolation, deep despair and clear prejudice. The kind of stuff that makes your heart actually hurt in your chest.
And I was the one that was being asked if I was ok.
Crash!
Crash!
That was the first time that the facade of the world that I
thought we all lived in came crashing down and a whole 'nother perspective came
in to view.
It was one that was painful to look at. The world was not the way that I thought. People really were treated differently.
I spent the next 20 years looking for more of those moments. It broke my heart. It broke it wide open to hold even more of the world that I actually live in. It was a spark that linked understanding to action. While sometimes it burned (like when I got a serious talking to about taking up too much space during an anthropology class in college), it also gave me direction and community. I chose to be a social worker in schools so that I could work and play with children and the adults they spend time with, helping to create a culture of overt anti-racism and unlearning oppression (and yes celebrating diversity too). I went to work with white people and knew that while diversity was essential, there was/is work to be done before we share space (and power) with people of color. I represented. I said the wrong things over and over. I found other white people to work my guilt out with. It was my professional, my personal, my spiritual life. I wanted it to be a part of each and every day and each and every way I walked through the world.
And then....when I was 36, my professional life dropped away. My personal life became about 18 hour days in the ICU with our son. My life in connection with the Spirit came down to a faith that the life of my son was to be celebrated in every waking moment because who knew how much longer he would be with us.
It was one that was painful to look at. The world was not the way that I thought. People really were treated differently.
I spent the next 20 years looking for more of those moments. It broke my heart. It broke it wide open to hold even more of the world that I actually live in. It was a spark that linked understanding to action. While sometimes it burned (like when I got a serious talking to about taking up too much space during an anthropology class in college), it also gave me direction and community. I chose to be a social worker in schools so that I could work and play with children and the adults they spend time with, helping to create a culture of overt anti-racism and unlearning oppression (and yes celebrating diversity too). I went to work with white people and knew that while diversity was essential, there was/is work to be done before we share space (and power) with people of color. I represented. I said the wrong things over and over. I found other white people to work my guilt out with. It was my professional, my personal, my spiritual life. I wanted it to be a part of each and every day and each and every way I walked through the world.
And then....when I was 36, my professional life dropped away. My personal life became about 18 hour days in the ICU with our son. My life in connection with the Spirit came down to a faith that the life of my son was to be celebrated in every waking moment because who knew how much longer he would be with us.
My days got filled with ejection fractions, syringes, visitor badges, and staph infections. After we got out of the hospital it moved on to developmental delays, feeding tubes, Dr's visits, OT appointments, PT appointments, Speech therapy, early intervention, special education, and a larger germ pool.
I'm a stay-at-home mom of a 5 year old with developmental delays, a heart condition, a feeding tube, who loves robots, drumming, and is now just getting a inkling for peeing in the potty(Number 2..no way). He's also nowhere near being able to understand that his Mommy's heart is breaking for what our society is doing or not doing now that we've back-pedaled on giving everyone the right to vote, or taking away children to a foster system rather than have them live with their Native American families and communities. It's not just nor has it ever been just differences and inequality. It's violence and people grieving their lost loved ones, their sense of place, their sense of how much they matter.
So how do I walk and talk my heart when my kid's not even consistently understanding that he has poop coming out of his tush? How do I let him know that he's gonna grow up balancing his significant privilege with some significant setbacks? How do I let him know that there is room for both as he walks through the world? That the challenge is to not become stagnant in either? How do I manage the tube feedings and fights with insurance companies and ordering meds and trying to find appropriate summer programs with what used to be my life's work of uncovering/understanding/unlearning oppression?
How?
Part II.
Before this whole **** thing blew up
(or bloomed) ***** asked me why there are so few Black readers. First, I want to say that we are not just talking about
Black/African American folk. We are
talking about People of Color. We are talking about Non-white people. Native people,
Hispanic people, all different types of Asian folk, Middle Eastern people, and
on and on. We need to start here, but as
white people we are so tuned in to ‘us’ and ‘them’ and African Americans are a
simple and obvious ‘them’.
I don’t know how many **** are
People of Color but I get the sense that there aren’t that many.
I think it would be an interesting
question to put out there somehow. In the interest of understanding who we **** are and who we might want to be. Who are
we, simply in terms of our race/ethnicity? Simple Hah!!!
That might just be another form of white privilege assuming who we are. BUT the
**** events show a lot of white faces
(beautiful faces for sure but still mostly white).
**** is our founding ****. As much as I can tell she is a white
woman. She’ll correct me if I’m wrong and then we get to have a whole ‘nother
conversation.
But given that assumption… She, and I,
and all other white folks are products of all the privilege that comes with
being white women (and men) in this country. Without a doubt we have so many
other pieces to who we are, but being white is a part of that and that what
we’re talking about.
* An awesome part of white privilege
is derailing conversations by saying, “But let’s talk about class, or gender,
or sexuality!). Those are very real too.
So let’s stick it out.
When I say we are a product of the
privilege that comes along with that whiteness…here is what I mean.
Anti-racism 101- (this is the stuff
that blew my mind and continues to do so as I've tried to make it a part of my
lens- the way in which I view the world every day)
In 1492, Columbus sailed the ocean
blue and since that year, a lot went down. I’m not even going to start with what
happened to the folks that were here first, or those that were brought over as
property. Nope, this is about us, whitey white folks that either were a part of
that original sailing or came over afterwards but still burnt easily in the
sun. White folk. We settled here, we founded towns and eventually cities. We
separated from the Queen and got into some serious Country making. Everything
started for us then. Every single institution that makes up our society was built.
Government, education, banking, military, industry, health care and a few others that I can’t think of. It was all
founded during this time. These were all
built by, for, and to benefit white people. Exclusively.
Legally and exclusively.
This was also a time in our history
when people of color were considered less than. Less than human. Less than
animals. Just less than. Human beings
were bought and sold, displaced time and time again, murdered for no reason,
and put to slave labor building the foundations of our country . For Hundreds
of years.
For hundreds of years.
And then when we stopped being
allowed to own other people, they were still kept separate, not allowed to
speak their own language, taken to boarding schools, hung from trees, etc. etc .
It’s not a history lesson but
you get what I mean.
For hundreds of years.
And here’s the kicker for me.
It’s not until 1964 (then ’65 and ’68) that it becomes illegal to discriminate,
segregate, and enact hate (So says MC Fitch) with the Civil Right Acts. An Act written and signed by an all-white
male government. (Nope, one white woman in the Senate, just looked it up.)
Check the numbers.
1492 to 1964= 472 years
1968 to 2013= 45 years
I like to round up.
500 years of doing things one way,
versus 50 years of trying to do them another.
500 Versus 50.
(You can imagine me
saying this 3x with both hands raised shaking my right hand for “500” and then
my left “50”. Driving it home 3x for dramatic effect) It’s crazy making.
And then, I go back to make my point
about what was happening during those first 500 years. Every single institution
that makes up our country/society/culture was being built… with that mindset.
That’s deep.
So what does this have to do
with **** and spreading the love? What does it have to do with our nation’s top
Court handing down decisions that most of us will never feel the effects of?
What does it have to do with Rachel Jeantel on the stand during the Trayvon
Martin trial? Or, Brittany Cooper on her flight home for the 4th of
July? http://www.salon.com/2013/07/04/the_n_word_on_the_4th_of_july/
Everything. We've come so far but
really, we are infants when it comes to understanding how deep
institutionalized racism and privilege go.
And when I say” we”, I mean white people. People of color know how deep
it goes because it hits them all the time. For us white folks, it keep us
separate, it keeps us safe, it keeps us utilizing privilege and resources, so
much more than is our fair share. It hurts us and we don’t even know how it
hurts us and that’s the nature of institutionalized privilege.
We might even know that we don’t
want it but we’re not sure how to not use it. (Triple negative I know, sorry.)
This ***, this community, it reaches
so many. And I believe that if we’re talking about love and justice and
spreading the word of a man that was totally in the trenches, you got make a
real aggressive effort to include people of color……
Or not.
It may not be your thing but that doesn't mean that there isn't work to be done with our readers, most of us who
are most likely white.
In my opinion this is where the
healing from racism and white privilege comes. White people working with other
white people. It’s not my job to fix racism for people of color. That’s more
about my ego that has been pumped hard by racism. It’s my work to be with other
white people as we help each other move through the guilt to understand where
our privilege and the institution of Racism are still in place.
The first question for me is really
always, “Is there something keeping me from touching this?” I know the answer
for me is always yes. I’m afraid of saying the wrong thing. I’m afraid of letting
my privilege show its ugly head. I’m afraid of getting it wrong and being just
another foolish white person trying to be ‘down’ but not going to get it right.
Then I’ll be rejected by people of color and I really want to be liked. I
really really want to be liked by them because in my heart of hearts it’s all
about them liking me. Yes, I still think
that way. I do. I admit it.
More and more though I find that
when I remember that it’s not about ‘them’ liking me, it’s about me liking me
and doing the work with others like me, the deeper relationships and
connections come. With other white people AND people of color. It’s about
putting it out there that I am at the very beginning of this journey (just as
we are as a society- remember 500 v. 50) and I can be gentle and diligent at
the same time. And I will screw up over and over again. I have 500 years to
unlearn and only 50 years of not so great (and some great) modeling to learn
from.
It’s comes back to love and
connection. If one of my main purposes here on this planet during this life is
to feel love, in giving and receiving, without fear, then I must continue to
practice what you and I love about **** and what she preaches.
Be Brave
Be Kind
Show up
I love the bumper sticker “Don’t believe
everything you think”. Some of the most
joy-full, heartbreaking open, hardest and best-est moments in my life have come when I've sat right down in that message and
opened my eyes (or had them pried open for me) to be transformed. Not just
learned something new on top of what I already thought I knew, but truly
transformed into something wholly (Holy) different. Amazing things/people have
come to me that way.
And then there’s Jesus. Let's
just remember that the man was dark. He was a person of color. He would be
stopped more than you or I at TSA checkpoints. He would be having a harder time voting in November elections. He
would be the one living down at Occupy rallies. Sure, because of the free food
and health care but also because he was a radical. He was an activist. He lived
in and breathed the call for justice. Not in a ‘let’s pass legislature’
kind of way. He wanted to be, bathe, and break bread with the ‘lowest’ of the
low AND he wasn't afraid to love those that were doing the oppressing either.
We are able to love so hard. It’s
brilliant to watch it catch fire and spread around certain issues. The support that Jaime and Simon and I have
received from all of you, for our film, for healing hearts, for simply being
who we are, has been amazing. It is also
heart breaking to watch it be selective. That we can have love and social action
for some things but not others.
‘Love Winning’ is catching fire and spreading.
That it has been directed at individuals for whom love has been dangerous and
illegal even, is truly inspiring. I also want it to catch fire and spread in
the name of justice that has been denied for hundreds of years. For people
misplaced, disenfranchised, murdered, dislocated, denied, and silenced because
of race or ethnicity. It’s not a simple conversation. It’s complicated beyond
belief…but not beyond faith and connection and deep breaths and really, really
listening to each other. Oh yeah, and we get to do all this while parenting,
working, cooking, trying to make it through summer vacation drop offs, coveted
date nights (and for some of us, feeding therapy, occupational therapy,
physical therapy, insurance fights, and parenting wonder-full children with a
little bit more going on.)
So thank you for loving my family
and rooting for Love to Win. I will continue to do the same for you and for
those affected every day by anything less than love and celebration.
Ginormous love and open arms
to each and every one of you.
Laura
Part
III.
Today while I was waiting to go in
to the Chiropractor an older African American woman coming out and waiting to
pay says "I don't mean to bother you at all but I wanted to ask you a
question" I love questions so I say of course wondering where this is
going.
She pauses and with some shyness
asks "Are you Gay?"
I smile as big as I can back to her
and say yes, still wondering where this is going but willing to grin into it.
She smiles as big right back and
says "I just wanted to say congratulations to you. It's really wonderful
isn't it? Congratulations."
I feel flushed with history, hers
and mine, this moment, and her
generosity. I put my hand to my heart and just take it in for a moment before I
say "Thank you so much for that. I know that what came before with the
Voting Rights Act and the Indian Child Welfare Act makes it feel somewhat
hollow but you just made my day reminding me that it's about keeping on and
even a baby step forward is still a step forward. Our work is not done. Thank
you. Thank you for that."
She moves in for a hug and I am
reminded that we are all in fact connected and while it's not easy feeling that
all the time, especially when things are hard and promote separateness, making
connections is still one of the most important things.
I know this might elicit a lot of
responses and while I look forward to the conversations that ensue I also
wanted to share some resources. These
articles have been helpful to me in understanding my own part in this as well
as the parts that are in place that are not mine but that I need to work to
dismantle.
It’s not perfect or complete but
then neither am I.
Saturday, June 8, 2013
Healing
Simon went under general anesthsia today for the first time since he was a critically ill baby in the ICU. The idea of him going under general scared the bejeezus out of Laura and I even though he's really medically stable. Yes, his heart function has been in the normal range for a long time, but HELLO! He almost needed a heart transplant 4 years ago. Crazy shit happens. Especially to us. So...it was a totally minor surgery (endoscopy for his feeding therapy program and ear tubes) but obviously not that minor for us.
The feeding therapy program requires an endoscopy because so many kids that have gone through their program ended up having some sort of asymptomatic, undiagnosed gastrointestinal issue that interfered with their ability to be successful in the program. He had to be put under for the scope and once we found out he had to go under general for that, we decided to have tubes put in his ears while he was out since we'd been discussing them for months but hadn't wanted to put him under just for that.
Laura did all the pre-op appointments and conversations so I didn't have any of the details about how his anesthesia would be administered. When she told me last week that he'd be having gas I started to feel a little panicky. The most traumatic experience of my life was going under for a tonsillectomy at age 5 (um, yeah, the same age Simon is now) My surgery was at a non-pediatric hospital and they didn't have anything like child life specialists to help prepare kids. When they put the mask on me (without my parents present,of course, because it was 1981), I was not prepared for it to be hard to breathe or to smell the gas. I thought I was being suffocated to death and that no one knew that something was wrong. I understandably put up a huge fight and my last memory was being held down by a bunch of adults while I thought I was dying. I have had lifelong issues with anxiety as a result (which I didn't link to this experience until a few years ago when I read "Waking the Tiger"- an amazing book if you haven't read it!).
I was feeling pretty nervous for Simon's procedure partly because of his heart condition but mostly because I didn't want him to experience the same kind of trauma I did. I think I can safely say his experience was nothing like mine, thanks to the incredible team at Children's Hospital Oakland and our support system.
Laura's Dad (he's in town visiting) and Simon's godmommies Joan and Andreana met us at the hospital at 8 am. Joan and Andreana brough donuts to celebrate National Donut Day- we ate ourselves sick on those while Simon was having his procedure. We walk back to bed 8 and who is standing there but the very first nurse who ever took care of Simon in the ICU, Margaret! Margaret blew me away because on her very first shift with us, she learned which one of us was Mommy and which one was Mama and got it right even when we couldn't remember. We LOVE us some Margaret. Oh, and she's a fantastic nurse and saved his ass a few times in the ICU. It felt like a good omen.
Simon was charming as ever:
| Sassypants getting weighed |
| Margaret trying to check his heart. "Do I listen here, on your hand?" |
| "There it is!" |
Then, who comes walking in but Geralyn, another one of our favorite nurses! She knew we were coming via our posts on Facebook and was having a slow morning so she came to visit:
A Child Life specialist came by (Laura and Simon had met with them before to get used to all the equipment including the anesthesia mask and to see what ear tubes look like). They gave him a medical kit to play with before his surgery:
| Giving PopPop a check up before surgery |
Simon was given Versed (a sedative) through his G-tube and we all had to work REALLY hard not to laugh in his face as he started acting like a drunken sailor. "I'm S-e-c-r-e-t-a-r-i-a-t" he slurred. "I'm awaaake" he informed us. Uh huh. Okay, Bub. Whatever you say.
The anesthesiologist came by and started asking a few basic questions. It was immediately apparent that he had not gotten the 411 on Simon. Laura and I looked at each other. "Simon has dilated cardiomyopathy", Laura said. I wish you could have seen his face. "This is considerably more complicated than I anticipated" he said and hurried off to get caught up on Simon's chart. Fortunately, our fave nurse, Geralyn, had already done the happy dance when she saw that he was our anesthesiologist, so we decided not to freak out. He came back a few minutes later, much relieved at Simon's latest echo results.
All of a sudden, it was time to go. Laura and I quickly had to decide who was going to carry him in. Laura graciously let me and we suddenly entered the bright, sterile, cold OR. I felt a little shiver of fear but took a deep breath and tried to keep my focus on Simon. I laid him on the bed and all of a sudden, the mask was there. I got my face right next to his and just kept talking and stroking his head. Laura was right next to me, further down his body and had her hands on him so he'd know she was there.
The team had warned us just before we went in that kids sometimes fight the mask and panic a little. I tried to banish the images from my own experience and just stay super, super, super calm and reassuring. He struggled a little but mostly just looked surprised. In a stroke of genius, I remembered how much work we had done to get him used to using a mask and spacer when he's needed to take an inhaler, or "special breathing" as we call it, when he's had bad colds. "It's just like special breathing, Baby", I kept repeating and counted like we do when he has to do 10 breaths. Laura and I kept saying reassuring things until his eyes closed and the doctor and nurse said they thought he was out. It was totally unnerving though, because his body was still arched, his hand tightly gripping the nurses hand and Laura said he was still kicking his leg a little. The doctor said we could have a little cheek and we both smooched him on the cheek next to the mask and headed out.
I felt better than I anticipated but still sort of cold and shocked and jittery. Laura looked a little traumatized too. We didn't really have time to process before we all went down to get coffee and eat donuts. I joked later that we needed a "yichud" like we had at our wedding (a few minutes alone together at the conclusion of the wedding ceremony). Laura and I were anxious to get back up so we scarfed our goodies and went back up to wait.
The two staff members from the Child Life team passed us on their way down the hall. They said incredibly sweet things to us that I can't exactly remember, but something to the effect of "that went incredibly well when he had a little struggle and it could have gone really differently with another family" and "it's amazing to see a family have so much support. It really makes a difference". It was gratifying to get feedback that we did a good job and I was SO glad Bernie and Joan and Andreana were there to hear someone affirm how much they matter to this process. Goooo Team Shimmy!
About ten minutes later his gastroenterologist came by with shiny pretty pictures of his gut (nothing obviously going on but they'll do pathology on the biopsies to turn over every stone) and then it was time to go in to the recovery room. He was as pissed off coming out of anesthesia as he was as a baby. He cried furiously and tried to take the splint of his arm with the IV and swatted at us constantly, knocking off Laura's glasses at one point. We just let him cry and be mad, while trying to avoid getting a black eye.
I kept saying, "I'd be really mad too! Go ahead and cry, babe. This totally sucks." I really think a lot of what causes emotional trauma is not as much the actual incident but feelings about the incident and not being able to express them or make sense of them. My goal was to let him be as mad and sad as he needed to be, even if it disturbed everyone else. After about 45 minutes, we were sent home.
Simon cried all the way home and then, as soon as we pulled in the driveway, he stopped crying. He watched videos, had a snack, took a nap and then BAM, he was back to being Simon. It was crazy to watch how fast he bounced back. I'm expecting some waves over the next few days and weeks as he processes it but so far, so good.
| Our entourage |
Simon cried all the way home and then, as soon as we pulled in the driveway, he stopped crying. He watched videos, had a snack, took a nap and then BAM, he was back to being Simon. It was crazy to watch how fast he bounced back. I'm expecting some waves over the next few days and weeks as he processes it but so far, so good.
It's been a tremendous gift to see how things can go for a kid when everything is done right. I am so grateful to Children's Hospital Oakland for helping Simon have a successful, positive experience and for helping me heal old wounds.
Blessings, blessings, blessings abound.
Wednesday, May 1, 2013
Gratitude Sucks
We just got back from 2 days at Children's Hospital Orange County. We went down so Simon could be assessed to see if he is a good candidate for a 3-week inpatient feeding therapy program. He is. He and Laura are going to go down there as soon as they have an opening (we're scheduled for early December but we'll see if another spot opens before then). The Ronald McDonald House was awesome. The Feeding Therapy team was amazing and totally in love with Simon after 2 hours. He'll be in great hands.
Okay, so that's out of the way.
Tonight I am so pissed. I am so pissed I want to have a total 3-year old, foot-stomping, thing-throwing, red-faced-screaming, totally irrational freak-out temper tantrum.
I just picked a fight with Laura about money and us getting financial support from our parents because I am so tired of being grateful I just want to crawl out of my skin. I'm tired of being grateful for gifts I don't want. Who wants to get gifts of money to pay for Occupational Therapy? Who wants to use the educational fund great uncles set up for their child to pay for plane tickets to a freaking hospital to teach him how to eat? Who wants get heartburn from free food made by Girl Scouts at a Ronald McDonald house?
Not me.
I'm tired of it. And I'm tired of being worried that I don't look/act/sound grateful enough for all the help we get. Right now, I'm not even going there. Cuz I'm tired of it.
I'm tired of working so hard to turn shit into gold.
I'm SO pissed that I had to wait until my kid was 5 years old before he said, "Mama, come sit next to me". Right now, I don't care that some other parents will never even get that. I'm pissed that we had to wait that long. It's not right.
I'm so tired of comparing ourselves to families that are worse off and being grateful that we're not them. I'm tired of saying, "Wow, things could be so much worse. We could have a kid that has x/y/z or doesn't q/r/s". I'm tired of it.
I'm tired of picking up crumbs and holding them up like they're Manna. They're crumbs.
This thing we are doing is so goddamn hard sometimes and I'm not even the one doing the heavy lifting. Laura is. She's the one that's about to get locked inside a hospital again for THREE WEEKS. She's the one that quit her job and lost her career and has ended up waiting on Simon hand and foot. Other mothers devote themselves to their children, but most other mothers are not still changing diapers and handfeeding at 5 years old. But Laura is. I'm tired of it for her.
I'm tired of living in a world where my Facebook feed is filled with news about kids dying. Or getting hospitalized. Or having to get all manner of godawful tests or diagnoses of crap I can't even spell. With hideous regularity. Yes, yes, it's such a treasure to get to expand our world, blah, blah, but right now I'm just tired of it.
I'm pissed that we need a scholarship for summer camp and pissed that he's going to be with 3-4 year olds instead of kids his own age. I'm pissed that we can't just send him to his neighborhood school and join the PTA and bake cookies like the other Moms. No, we have to have a 4-hour meeting about it and wait for someone to spy on him in his natural habitat (his current special day class) and tell us if he can hang with the socially-messed up but smarty-pants kids or with the not-so-smarty-pants messed-up kids. Whatever school he goes to, we will probably end up on some damn committee fighting for inclusion of kids that are all jacked up instead of shirking PTA duties. I'm tired of it.
I am not feeling grateful for any of this bullshit. It sucks.
Okay, so that's out of the way.
Tonight I am so pissed. I am so pissed I want to have a total 3-year old, foot-stomping, thing-throwing, red-faced-screaming, totally irrational freak-out temper tantrum.
I just picked a fight with Laura about money and us getting financial support from our parents because I am so tired of being grateful I just want to crawl out of my skin. I'm tired of being grateful for gifts I don't want. Who wants to get gifts of money to pay for Occupational Therapy? Who wants to use the educational fund great uncles set up for their child to pay for plane tickets to a freaking hospital to teach him how to eat? Who wants get heartburn from free food made by Girl Scouts at a Ronald McDonald house?
Not me.
I'm tired of it. And I'm tired of being worried that I don't look/act/sound grateful enough for all the help we get. Right now, I'm not even going there. Cuz I'm tired of it.
I'm tired of working so hard to turn shit into gold.
I'm SO pissed that I had to wait until my kid was 5 years old before he said, "Mama, come sit next to me". Right now, I don't care that some other parents will never even get that. I'm pissed that we had to wait that long. It's not right.
I'm so tired of comparing ourselves to families that are worse off and being grateful that we're not them. I'm tired of saying, "Wow, things could be so much worse. We could have a kid that has x/y/z or doesn't q/r/s". I'm tired of it.
I'm tired of picking up crumbs and holding them up like they're Manna. They're crumbs.
This thing we are doing is so goddamn hard sometimes and I'm not even the one doing the heavy lifting. Laura is. She's the one that's about to get locked inside a hospital again for THREE WEEKS. She's the one that quit her job and lost her career and has ended up waiting on Simon hand and foot. Other mothers devote themselves to their children, but most other mothers are not still changing diapers and handfeeding at 5 years old. But Laura is. I'm tired of it for her.
I'm tired of living in a world where my Facebook feed is filled with news about kids dying. Or getting hospitalized. Or having to get all manner of godawful tests or diagnoses of crap I can't even spell. With hideous regularity. Yes, yes, it's such a treasure to get to expand our world, blah, blah, but right now I'm just tired of it.
I'm pissed that we need a scholarship for summer camp and pissed that he's going to be with 3-4 year olds instead of kids his own age. I'm pissed that we can't just send him to his neighborhood school and join the PTA and bake cookies like the other Moms. No, we have to have a 4-hour meeting about it and wait for someone to spy on him in his natural habitat (his current special day class) and tell us if he can hang with the socially-messed up but smarty-pants kids or with the not-so-smarty-pants messed-up kids. Whatever school he goes to, we will probably end up on some damn committee fighting for inclusion of kids that are all jacked up instead of shirking PTA duties. I'm tired of it.
I am not feeling grateful for any of this bullshit. It sucks.
Wednesday, April 24, 2013
Seismic Shift
As a resident of California, I half-expect a life altering earthquake to happen at any given moment. I walk around with my ears tuned for the low rumble that signals earth-shattering movement. A few weeks ago there was a massive seismic shift that I missed. We're not sure exactly when it happened, but something critical shifted for Simon. He has started closing gaps at a speed we can't quite comprehend. As his teacher said, "it's like 50% of his programs loaded all at once".
First and most dramatically, our kid started eating. Like really eating. Pretty much overnight he went from eating *maybe* 5% of his calories by mouth to 30% by mouth. He used to have a few good days of eating 2 oz of food at lunch but then he'd get a stuffy nose or he'd get a little gaggy or the winds were wrong and it would be over. Now he just chews with his mouth open if his nose is stuffy. He gags with food in his mouth, waits until the nausea passes and then keeps chewing. And swallows it. He asks for food night and day. It's insane. And hilariously ironic.We're going to Children's Hospital Orange County next Tuesday to do the intake process for an intensive feeding program. A program that we've fought to qualify for for months. If he keeps up like this, we might end up not needing it.
He also has started potty training in earnest. We have been working on potty training for I don't know how many years and decided to just stop a few months ago. A week and a half ago, we decided to try it again by not letting him wear a diaper in the house. He went diaper free on Sunday and only had one accident. He has said on multiple occasions, "Mama/Mommy, I have to go pee" and we go and try and he does it. This is nothing short of a miracle. It's going to be a long road, but it's happening!
His pragmatic speech is insane. If he's in another room and wants someone's attention, he calls their name LOUDLY until they respond. If he calls Laura and she doesn't respond the first 3 times to "Mommy", he switches to "Mommy Laura". This is a level of sophistication and comprehension about engaging another person that we have never seen before. He'll grab your hand and take you to things.
Until recently, he usually acts like he doesn't really notice or care if you're there or not. Last week we all went out to sushi and I started to walk him down the street while Laura stayed behind to pay the bill. He stopped just outside the restaurant and said, "Where's Mommy". He has never asked about anyone in that way before. And he wouldn't keep walking. He was aware that she wasn't there and he wanted to be with her and was not willing to go without her. It was a first.
I was in Trader Joes with him this weekend and he saw a papaya. He turned to me and asked me "what's this?" I think my jaw literally dropped open. Our kid has NEVER asked what something was. I told him and he asked me about 4 other items. It was amazing. He's never asked a why question and I have a feeling that's next.
He has started dancing to one of the shows he has watched for months. All of a sudden, he's copying their movements. Before this shift, he had a very robotic, awkward movement that he would do only if you practically had a cheerleading team screaming encouragement. He's jumping and running and in his body in a totlaly different way.
We have no idea what changed but we are so totally digging it. We also wonder what this will mean for the pending autism assessments he's undergoing to determine if he will get a medical diagnosis of autism in addition to the classification by the school district. He had a speech assessment as part of the medical testing and the therapist was really unclear about whether or not he's on the spectrum after meeting with him. We're still waiting for the report. We may still go with the diagnosis based on the school assessment in order to get more services, but it's definitely not crystal clear that he's on the spectrum.
On some level it feels like these things are coming out of nowhere, but if I step back for a second I know that's not true. Laura has spent almost every single minute of every single day of Simon's life to get him here. She has worked tirelessly on his speech, potty training, eating, balance, movement, social skills, all of it for years. And with these recent changes, particularly the eating and potty training, her work has actually increased exponentally. She's tired. Thrilled but tired. She's still in her chaplaincy program until the end of May and balancing all of of this has been hard.We still haven't figured out quite how to shift some of the labor to me but we're trying. Just got to give her a shout out. This would not be happening without her tireless love, dedication, and insane amounts of work.
A final note: Our friend Glennon, the author of the incredibly popular blog Momastery and #3 New York Times bestseller "Carry On Warrior" just posted a piece I wrote for her blog. She has, um, over 75,000 readers. The comments have been unbelievably touching. Last weekend we got to meet her in the flesh when she was here for her book tour. It was beautiful. Really, it was like catching up with a lifelong friend, not meeting someone in person for the first time. If you haven't read her blog, you must. Honest.
Here are some pics to capture the last few weeks.
First and most dramatically, our kid started eating. Like really eating. Pretty much overnight he went from eating *maybe* 5% of his calories by mouth to 30% by mouth. He used to have a few good days of eating 2 oz of food at lunch but then he'd get a stuffy nose or he'd get a little gaggy or the winds were wrong and it would be over. Now he just chews with his mouth open if his nose is stuffy. He gags with food in his mouth, waits until the nausea passes and then keeps chewing. And swallows it. He asks for food night and day. It's insane. And hilariously ironic.We're going to Children's Hospital Orange County next Tuesday to do the intake process for an intensive feeding program. A program that we've fought to qualify for for months. If he keeps up like this, we might end up not needing it.
He also has started potty training in earnest. We have been working on potty training for I don't know how many years and decided to just stop a few months ago. A week and a half ago, we decided to try it again by not letting him wear a diaper in the house. He went diaper free on Sunday and only had one accident. He has said on multiple occasions, "Mama/Mommy, I have to go pee" and we go and try and he does it. This is nothing short of a miracle. It's going to be a long road, but it's happening!
His pragmatic speech is insane. If he's in another room and wants someone's attention, he calls their name LOUDLY until they respond. If he calls Laura and she doesn't respond the first 3 times to "Mommy", he switches to "Mommy Laura". This is a level of sophistication and comprehension about engaging another person that we have never seen before. He'll grab your hand and take you to things.
Until recently, he usually acts like he doesn't really notice or care if you're there or not. Last week we all went out to sushi and I started to walk him down the street while Laura stayed behind to pay the bill. He stopped just outside the restaurant and said, "Where's Mommy". He has never asked about anyone in that way before. And he wouldn't keep walking. He was aware that she wasn't there and he wanted to be with her and was not willing to go without her. It was a first.
I was in Trader Joes with him this weekend and he saw a papaya. He turned to me and asked me "what's this?" I think my jaw literally dropped open. Our kid has NEVER asked what something was. I told him and he asked me about 4 other items. It was amazing. He's never asked a why question and I have a feeling that's next.
He has started dancing to one of the shows he has watched for months. All of a sudden, he's copying their movements. Before this shift, he had a very robotic, awkward movement that he would do only if you practically had a cheerleading team screaming encouragement. He's jumping and running and in his body in a totlaly different way.
We have no idea what changed but we are so totally digging it. We also wonder what this will mean for the pending autism assessments he's undergoing to determine if he will get a medical diagnosis of autism in addition to the classification by the school district. He had a speech assessment as part of the medical testing and the therapist was really unclear about whether or not he's on the spectrum after meeting with him. We're still waiting for the report. We may still go with the diagnosis based on the school assessment in order to get more services, but it's definitely not crystal clear that he's on the spectrum.
On some level it feels like these things are coming out of nowhere, but if I step back for a second I know that's not true. Laura has spent almost every single minute of every single day of Simon's life to get him here. She has worked tirelessly on his speech, potty training, eating, balance, movement, social skills, all of it for years. And with these recent changes, particularly the eating and potty training, her work has actually increased exponentally. She's tired. Thrilled but tired. She's still in her chaplaincy program until the end of May and balancing all of of this has been hard.We still haven't figured out quite how to shift some of the labor to me but we're trying. Just got to give her a shout out. This would not be happening without her tireless love, dedication, and insane amounts of work.
A final note: Our friend Glennon, the author of the incredibly popular blog Momastery and #3 New York Times bestseller "Carry On Warrior" just posted a piece I wrote for her blog. She has, um, over 75,000 readers. The comments have been unbelievably touching. Last weekend we got to meet her in the flesh when she was here for her book tour. It was beautiful. Really, it was like catching up with a lifelong friend, not meeting someone in person for the first time. If you haven't read her blog, you must. Honest.
Here are some pics to capture the last few weeks.
| Scary animal in the kitchen |
| Tigers in the kitchen |
| Simon's awesome Angry Birds birthday cake made by his Auntie Joan |
![]() |
| Meeting Glennon! |
| Simon and our sweet neighbor Nathan having snuggle time |
Simon and Nathan playing "Hot dog" in the hammock
| His favorite phrase these days is "you are hi-larious!" Evidently Nathan was! |
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