Stronger than…

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Were I to wax metaphorical about her strength, to your ears it would sound like so much hyperbole.

No, I’m much too close.  I have borne witness to it, stood in its light and been seared.  I can’t be trusted to pace myself with any poetic flair, so just the facts…

Two pure souls brought into this world, and I see her instantly transform into a person that would pay any price to see them flourish.

Stronger than childbirth.

The devastation of learning her child will not flourish, not like other children.

Stronger than a metabolic diagnosis.

The endurance to cultivate the skills of speech and eating and walking and… when typical development is not promised.

Stronger than her child’s developmental challenges.

A pillar keeping the family upright while I repaired confidence in my professional career.

Strong for me when I am weak.

The utter lack of any hesitation to sacrifice flesh, ingest poison, absorb radiation, anything to be there for her family.

Stronger than cancer.

When faced with anxiety and depression she inevitably chooses the third option, to go forward.

We’ll beat this too.

Hello, is this Catherine?

Yes.

Hi Catherine this is S from Dr. C’s office. (sigh) Are you at home?

That bad huh?

Is anyone home with you?

Not now, but there can be soon.

That will be a good idea. I have your pathology report. I am so sorry, it is breast cancer.

 

I have breast cancer. Stage 2,  grade 3,  invasive ductal carcinoma.

I am having a hard time forming complete sentences from my thoughts and feelings, please bear with me. This post might be a bit of a mess. I’ll start with the fact I am not going to die from this. The cancer I have is very treatable and, fortunately, caught fairly early.

As soon as I heard “cancer”, I knew this was not going to beat me. Becoming a parent changes you. It changes how you value your own life.

My first thought was my husband. This man is a rock. He absorbs punch after punch and continues to carry his family and care for them with selfless tenderness. I have never met a tougher more confident person in my life. My first thought went to him: “I can not leave Dan to do this alone.” We are a team.

My second thought: “My girls need me.” Period, nothing more needs to be said.

My third thought: “I can beat this and still hold my new baby.” Exactly 3 weeks before this phone call we were celebrating the heartbeat of the new edition to our family. At the time of the phone call I was 10 weeks into my pregnancy.

We just endured an exhausting 10 days of doctor’s appointments, medical procedures and heartbreaking information.

  • Wed: Breast needle biopsy
  • Thu: Pathology results. Cancer.
  • Fri, Sat, Sun, Mon: Process and inform loved ones.
  • Tue: Surgery (morning) and Oncology (afternoon) appointments
  • Wed: Perinatology consult, geneticist and ultrasound… unfortunate order because fetus has no heartbeat.
  • Thu: Process and inform loved ones.
  • Fri: D&C.

We were heartbroken over the loss of this pregnancy. It had been a light in the storm, something to guide us in the midst of cancer treatments. However, there was also a strange sense of relief at this loss. The heavy worry of saving my life and not harming my little bun in the oven was lifted off my shoulders. Dan and I were handling this stab to our hearts like we always do, together and with our eyes set on the future. We drove to the hospital for the D&C and I was scared. Not of the procedure itself, but of how I would feel after it was done. What will this do to me?

I woke up in recovery and all I felt was peace, closure and contentment. I was happy with my life and the two beautiful girls we have. I was ready to move forward and kick cancer’s ass. I suspect there will always be a little pain from this loss and I am at peace with that.

What’s the plan now? That is a two step process:

  1. Epic spa getaway with my childhood best friend. More like sisters than friends.
  2. Gloves on, hands up and knock the hell out of cancer.

The good far outweighs the bad in my life. My husband, oh Dan, I don’t even know what to say. My partner, my strength, my laughter, my love…you are my everything. (thank you for my new Kate Spade handbag and spa getaway!). This PM convo sums it up:

Do you know that you win father and husband of the year, every freaking year?!

#islay

I couldn’t do this fight without you.

I got you.

Always.

We have a long list of family and friends waiting for a word, any word, that would indicate we need help. Warriors waiting and ready 24/7. My wonderful parents drove down with only a days notice. I have two beautiful little packages of joy and hope, Natalie and Cara.

We’ll need love, understanding, patience, laughter and wine drinking buddies during this fight. What we don’t need is sympathy. There is a fight ahead but we are a happy and fortunate family. We aren’t new to medical battles and we’ll beat this too.

 

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Afflict the comfortable to comfort the afflicted

With the diagnosis of PDH deficiency Cara is the victim of a staggeringly unlikely series of unfortunate events.  While it would be momentarily palliative to use this occasion to restate my own agnosticism that would be self centered and counterproductive. However, this event has still prompted me to think about what we as a family need to thrive going forward. We thankfully find ourselves in a wellspring of medical support and therapeutic interventions, but given there is no cure we’ll continue to need emotional reserves and spiritual support for the long road ahead.

Of course, pity and platitudes will not get us to where we need to go. I would even go as far to say that we don’t need friends on this journey insomuch as we need allies.  Conscripts in the fight to carve out a corner of the world where life need not be as difficult for Cara as it would otherwise be.  A place where folks have the courage to practice empathy. Simple actions like dropping the word “retarded” your vocabulary, holding the door for someone in a wheelchair, or joining the “Carawatts” our Energy for Life Walk team.

Innovations have a hard time flowing from environments where there is a culture of denial of the problem space.  You don’t have to bring solutions to the ongoing difficulties faced by those among us with atypical abilities. Having the conviction and awareness to not be part of the problem is enough.

Diagnosis

Leaving baggage claim and still high on our magical Disney vacation, I look at my phone and notice I have email. At the top, is an email from Dr. K, “DNA results update”.

We have a diagnosis.

After over four years of testing, waiting, testing, waiting and more testing and more waiting, we have a diagnosis. A year ago samples of DNA from Cara, Dan and myself were sent to Utah for full genome sequencing. A mutation was found in the “PDHA1 gene that encodes one of the proteins in the pyruvate dehydrogenase complex.  In other words she has pyruvate dehydrogenase (PDH) deficiency.”  We knew from previous tests, how she presented and her response to the ketogenic diet that there was an issue with pyruvate metabolism. Thanks to Dr. K, Cara has already been on the treatment plan, the ketogenic diet, and has been responding as we hoped. The other piece of news we received is that neither Dan nor I are carriers of this gene. This was just really poor luck for sweet Cara.

Pyruvate Dehydrogenase Complex Deficiency (PDCD) falls under the umbrella of Mitochondrial Disease. Walking at The Energy For Life Walk in Seattle on October 4th just took on a new meaning.

We received the news 2 days ago. I knew I wanted to write something but I have been, and still am, at a loss for words. Yes, it is nice to finally have an answer and to know that neither Dan nor I carry the gene and that Natalie is in the clear. At the same time, there is a deep pain in my heart for Cara. The pain is not new, it’s been there since the beginning. Most of the time the pain is in the background but it came rushing to the forefront this day. I am in a place that is hard to articulate – not happy, not sad, not angry just a “Yup, this is where we are.” I guess it isn’t that I am not feeling any one of those particular emotions, but rather, all of them at once.

 

 

Hey Cara, You Are 5!

My dearest sweet Cara,

5! You are 5 baby girl! Two days ago you had your first very own birthday party. We had so many friends from all parts of your life come to our house to celebrate you. The theme was The Wizard of Oz. You know that song you love so much, “Over the Rainbow”? That song came from the movie The Wizard of Oz! Everyone came because we are all so proud of you and we love you. Do you know what happens when someone welcomes you into their heart? You bring sunshine and a beautiful rainbow into their life. We all came together and celebrated the last 5 years. Celebrated getting through the scary parts, the ouchie parts, celebrated the happy parts, all the words you can say, all the things you can do, how you can scoot around the floor, how you pull things down from the windowsill, how you like to bother Natalie, your love of books, the messes you make, the faces you make (oh the faces!), the tickles, your laugh, all the joy and most of all your love for paper! We celebrated all of it because it is all a part of your journey and a part of you. Everyone came to celebrate our journey with you. image3

There has been a few scary times. I am sure you have seen mommy cry, daddy cry and worried faces. I bet you have seen a lot more smiles though. I know sometimes there are needles and scary machines, but I bet there has been more times with giggles and toys. I know therapy can sometimes be hard, but I bet there has been a lot more fun! I know doctors like to move you around, touch you and their hands are cold! You know what else they like to do? Talk to you, smile at you and give high 5’s! I bet they would even like to give “knuckles”. Yes, there has been scary days and sad days, but many many more happy days. You makes us all so happy and are such a big helper through the tough parts.

Happy birthday my sweet treat! Here is my birthday wish for you: I wish for you to stay silly and keep using your voice! There might be more sad, scary and ouchie times and I can’t wish those away, but I can wish that there are many many more laughs, smiles and tickles. Silliness is always fun and funny! Tickles are pretty silly. We are a pretty silly family huh?

You have a beautiful voice. I love hearing it. “Voice” can also mean letting people know what you think and how you are feeling. It can be crying, it can be shaking your head no, even a big smile can be a voice. You are really good at letting everyone know if you like or don’t like something. Sometimes you say “yes!” and sometimes it is just a big huge smile. Sometimes you shake your head and sometimes you look scared and start to whine. Sometimes your therapists ask you to push buttons on your talker to let us know what you want to do or how you are feeling. All of this is your voice. It is really important to have a strong voice and you have one. Keep using it even if it feels like sometimes we don’t listen. We are listening, even if you say “no” and something still needs to happen. I promise you, we are listening and we want you to keep telling us.

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I have another birthday wish: I wish that you will always feel like we are proud of you, just the way you are. However you get around, whether it be with wheels, a walker, on your feet, crawling or someone carrying you, we are proud of you. However you talk, whether it is through your stink face, talker, crying, or words, we are proud of your voice. We are proud of how you eat and taste, whether it is through your tubie, with a spoon, your fingers, big bites or little bites, we are proud of how you eat. We are proud of you! I don’t ever want you to feel like we are sad or disappointed because you don’t do something or do something differently. We are so proud of you and we know how hard you work! You make us very very proud.

So, CareBear I love you. I know I say that all the time and it is because there is just so much love that I just need to tell you. I love you.

Happy Birthday big girl! You are 5!

With all our hearts and lots of tickles,

Mommy and Daddy

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Je Suis Seth MacFarlane

Preface: Saturday evening kids are in bed, put a movie on, A Million Ways to Die in the West.  We didn’t make it very far past the first cheap shot “retarded” joke, turned it off and found something else to do.  …and then the dark humor of a special needs parent kicks in,  mixes with recent events (references below) and ongoing disappointment with American popular culture’s obsession with the r-word…

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It has been over a week since Seth MacFarlane, creator of The Family Guy and American Dad TV series, was struck and killed while crossing the street in Los Angeles.  This report details what this news agency has been able to ascertain about the events leading up to the incident and deeper commentary on the events that have transpired since the tragic incident.

At 3:17pm on Monday, January 26th, Seth MacFarlane was struck in the crosswalk on Sunset Boulevard by a west bound Honda Odyssey.  Mr. MacFarlane later died of his injuries.  Accident investigators at the scene concluded that the vehicle, carrying a family of three, made no attempt to stop prior to the collision.  The driver, Jane Smith, was initially taken into custody to determine if she was under the influence of any substances.  However, we have now learned, from an unnamed source at the District Attorney’s office, that the state plans to bring criminal charges against her.  A press conference has been scheduled for later this afternoon where we expect this statement to be confirmed.

This turn of events of appears to corroborate the authenticity of an audio recording, allegedly taken shortly after the incident.  It has since gone viral on social media.  The anonymous poster of the recording claims to be a passerby that happened upon the scene and captured an exchange between Mrs. Smith and a paramedic.  Here is a portion of the transcript:

Paramedic: Ma’am, ma’am? Are you alright?

Mrs Smith: I… I… didn’t stop.   I… I… *couldn’t* stop.

Paramedic: Ma’am, please, are you injured?

Mrs. Smith: I mean, how could I stop!?  How can I give way to a man that has made a career of laughing at Alice and people like her?  How could I let him enjoy one more breath when Alice won’t see her next birthday!? *sobbing* …what have I done?

We reached out to the family, but received no comment prior to press time.  A neighbor of the Smith’s conveyed that 3-year old Alice Smith suffers from a rare metabolic disorder that has affected her brain and other vital organs.  The survival rate for those afflicted by this condition is low.  This neighbor stated the family is frequently at the hospital.  Video footage from the parking garage of Children’s Hospital Los Angeles show’s the Smith’s leaving at 2:58pm.

Since the announcement of the press conference a group of protesters has gathered in the Civic Center outside the Superior Court House with signage in support of Mr. MacFarlane.  We caught up with one of the protesters, holding a sign that read “Je Suis Seth MacFarlane” alluding to the solidarity rallying cry that the people of France embraced after the recent terrorist attacks.

Protester: “These people need to learn how to take a joke.  Just so you know, there is an entire private group on Facebook of over 900 members that laugh at parents like this.  We question their parenting skills, the behaviors they allow their children to exhibit amaze us and boggle our minds.  We thank them for making it so easy for us to conclude that retards should not be allowed in our society.  Disruptions to normal people’s days are distressing and their children will never be productive members in our society; they only take them out to make themselves feel better; to measure themselves on an unrealistic ruler, a ruler that moms with normal children think is stupid.” [1]

We reached out to a local couple for a response.  They co-author a blog that chronicles their journey caring for their special needs child.  Given the heightened tensions we are not disclosing their identity:

REPORTER: What do you make of the evidence that appears to implicate Jane Smith deliberately struck Mr. MacFarlane.

HUSBAND: It’s so sad and tragic.  Nothing justifies violence, period.   But…

WIFE: …but, we know the darkness that can envelop you after some of these hospital visits where you are yet again brought face-to-face with your impotence and helplessness to find a positive trajectory for your child’s health.

REPORTER: What is your reaction to this protest that appears to be taking a menacing stance against the special needs community?

HUSBAND: Typical, not surprising in the least.  I mostly feel it is a reaction to the resilience of the special needs community.  Strength in the face of adversity is intimidating.

REPORTER: If you could say something to this protester we interviewed what would it be?

HUSBAND: Individually? I don’t think it would make a difference, I’d rather speak to the wider culture that allows groups like this to operate.  Their rallying cry of Je Suis Seth MacFarlane reminds of a comment Jack Miles recently made in an interview:

“Je Suis Charlie has a double meaning. For the millions of demonstrators saying I am Charlie meant, you think you’ve killed Charlie Hebdo but let me tell you – I’m still here. You haven’t killed me and you’ll have to kill all of us if you want to kill off the French spirit of wit and satire and total freedom of speech. Who can disagree with that, you think. But the cartoons that had to do with Islam, you know, portraying a naked Muhammad writhing on his belly and asking the observer, do you like my butt? Cartoons like that seem to say to Muslims, Charlie Hebdo despises you – we despise your prophet and we despise you. And so when all of France rises up and says, I am Charlie Hebdo, all of France seems to be rising up and saying to the Muslims, we too despise you, we too scorn you just as the cartoonists of Charlie Hebdo did.  And you have to recognize that this is a metaphor and metaphors are always subject to more than one interpretation, and here are two perfectly clear, perfectly reasonable, but fatally contradictory interpretations.” [2]

It’s much the same in this situation.  Maybe these protesters are simply standing up for freedom of speech, but what I hear them say is that they enjoy the privilege and luxury of adding insult  to the injury that atypically developing individuals have already suffered.

REPORTER: Do you believe anything positive can come from this tragedy?

WIFE: Bill Maher once said in his defense of the word ‘retarded’ that “Language is a living breathing thing.  Americans have voted with their vernacular, they need the word ‘retarded’, they use it constantly”. [3]  I wish it were under different circumstances, but this incident has highlighted a divide between typical society and people like us.  I hope it prompts conversations that moves language and society forward to allow us to suffer our misfortune and mourn our children’s “normal” lives in peace.

References:
[1]: This was an a comment left on https://www.facebook.com/AutismUncensored in response the page author’s story of surviving a trip to the barber shop with an autistic son.
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[2]: http://www.npr.org/2015/01/29/382388786/editor-picks-religions-for-the-first-norton-anthology-of-world-religions

[3]: https://www.youtube.com/watch?v=EngtvUmSKQA

Goals: A Toxicity Spectrum

By one definition, a goal is a promise to internalize a sense of failure until some future instantaneous moment of achievement… that may never come.  It is all too easy to focus on the achievement and overlook “the process” as the primary source of benefit from the practice of goal setting.  It is all too easy to lose sight of that component vector of true success and enrichment when monetary gain and social consequences are attached to an outcome, not the process.

How anyone could land a job at Facebook, a new house in the bay area and not find happiness is a long story…

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#SuckItAetna

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Commit Count != Impact, but…

…suffice to say I had several things that kept me moving forward after the stark realization that the future required backtracking.  I have an irreplaceable, indomitable rock of a woman by my side that kept the ship running at full speed in my emotional absence.  I had wonderful colleagues at Facebook that afforded me every opportunity to grow and excel at the company.

In retrospect, the goals of “working at Facebook” and “living in ‘The Silicon Valley'” were point accomplishments disconnected with the momentum and trajectory of the past 10 years of my career.  For the first time in my life I had set a goal, achieved it, and not moved “forward”.  It was actually entertaining at first, watching from a distance as my arrogance was mercilessly obliterated in an open field.  Decidedly less so and frightening when that faceless predator rounded on my self confidence…

In any event, I am happy these days.  Getting back on track with full awareness of my abilities and limitations is inexplicably empowering.  However, the point of telling this story is not as a cautionary tale of navigating the technical job market.  It’s a point of reference on the toxicity spectrum.  Yes, the ubiquitous American pastime of setting goals and achieving dreams has downsides.  To a parent of a special needs child, this folksy sentiment is exceedingly venomous.  “Goals”, to a parent of a special needs child, have the capacity to be more destructive than something that makes you move to northern California for a year.  The consequences of wielding goals incorrectly in this context are devastating and the method of deriving any benefit from them at all is counter-intuitive.

It is the rare person that, when I tell them my daughter may always need a feeding tube, may never walk, or talk, does not fall into a bargaining-denial loop probing me for a happy ending.  “Please, could you be so kind as to excuse me from my budding feelings of sadness and helplessness?”  Inevitably, when the questions cease, they end up making a face that is half pity and half annoyance that I don’t know how to play the “Blind Hope and Reassurance” game.  However that’s when I get to feel pity for them as yet another person who sees life as a bag full accomplishments… akin to how small children measure the spoils of their Halloween trick-or-treating.

No, as the parent of a special needs child I have no use for disappointment or anxiety, dreams or hyperbolic positive thinking.  It’s a quantum super-position of emotional states where my wife and I are hell bent on the pursuit of eating, walking and talking while having absolutely zero attachment to the end game.  Every step in that direction is another fruit ripening on the tree.  If a certain branch stops growing and no more fruit comes we pause, step back, give thanks, and take pride in our beautiful tree.  She has earned the right to never feel “I am a disappointment to my parents.”

…and then we notice “hey, what’s this new little branch over here doing?”.

So, the old adage “Never lose sight of your goals” is completely backwards.  *Always* lose sight of your goals, be on the lookout for branches that bear more fruit, and pray that you never reach the end.