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.

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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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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

git-log

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.

How to Not Be a Dick to the Special Needs Community

But first, a test to find out where you land on the spectrum.  “Please don’t use the r-word (retard, retarded, -tard suffix, etc), it’s hurtful.”  If your response to that request is “ok.” then go ahead and move on with your day.  Sure, you might gain an insight or two about the community by reading this article, but you are likely in no jeopardy of ever being perceived as a dick with such carte blanche respectfulness.  If your response is “why?”, that’s actually great.  You may find some salient points here to help you probe that question.  Though, if your response is “sigh, why! …just another example of political correctness run amok!” then, sadly, there is a high likelihood that you are a hopelessly irredeemable asshole.  This article may be a waste of time for you.  The curious thing about people that espouse the PC-run-amok position is that they wear their ignorance and lack of basic human empathy like a badge of honor.  This loud proclamation is so very helpful, it makes PC-detractors easy to spot in a crowd so I can disassociate, de-friend, and distance myself from them and my family.  Please leave.

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Ok, now that we have the right audience, let’s proceed.

Step One: Please don’t use the r-word, it’s hurtful, just find another word

Truth be told in 2004 when the Black Eyed Peas rephrased their song from “Let’s get retarded” to “Let’s get it started” my honest initial reaction was disappointment.  I’m ashamed that it took 6 more years and someone handing me a membership card to the community that finds the r-word offensive for me to finally see how fucked up that reaction was and to see how insidious and poisonous that word has become.  There’s no better article I’ve seen than Catherine’s on the R-word for illustrating why that word feels like acid poured directly on the heart.  I can only hope that if a friend had sat me down and explained it to me I would have made the change earlier, hence this article for you.

Now if you read the above and still say, “but ‘retard’ just means ‘slow’, I do not mean any offense by its use, it’s just english”.  Sure, I get it, you’re straining to rationalize your word choice because you’d rather feel righteous indignation than guilt.  Just be aware of the massive power imbalance of you being able to choose another word and the special needs community’s modest request for respect while they deal with an affliction that has no cure.  Please default to being respectful when it costs you nothing lest you be perceived as a dick.

Step Two: Accept the fact that you too are disabled

Don’t believe me?  Then please proceed with me to the dance floor where we will perform a Cha Cha routine.  I imagine many of you saying “Oh, I’d never do that I would look totally retar… …foolish”.  By the way, thank you for catching yourself.  Yes, it’s a simple fact that we many times avoid attempting tasks that make us look foolish.  Now imagine that the tasks that revealed your disability were the ones we take for granted for living life.  Beautifully complicated tasks like maintaining balance while sitting and motor planning to grasp an object.  Truth is, those of us without neurological impairment are granted the gift of not having to consciously hold our frame and balance while sitting.  “Retarded” is deprecated as a medical term precisely because it is actively ignorant of reality.  Someone with neurological impairment appears “slow” attempting this simple task, but what that term denigrates is the beautiful capacity of neuroplasticity and the feat of compensation taking place to actively maintain body stability, route around the brain injury, and find another way to do what we all take for granted.  Be thankful for the privilege of avoiding tasks that make you appear disabled.  When you do attempt something where you feel foolish I hope that people offer you encouragement and understanding as you struggle, those that don’t you can rightly call a dick.

Step Three: Maintain a healthy skepticism of your ability to classify people as inside or outside of the special needs community.

Some families struggle for years to find out what is afflicting them only to lay a child to rest before being granted a label.  Others are lucky to get the label and, similar to how you and I actively hide our own disabilities, do their best to keep their disability private.  Sometimes they do such an effective job of pushing through the pain that they are rewarded with nasty-grams from people that believe they are committing fraud when they consume disability resources.  Rest assured that borrowing your grandmother’s disabled placard or renting disabled children to cut in line at Disneyland most definitely makes you a dick.  However, the only time I would trust your judgement to identify such abuse is if you witness Lebron James slipping into the last disabled parking space while Stephen Hawking is forced to circle around.  Outside of that I cringe at the injustice of you clumsily and literally adding insult to injury.

This cuts even deeper for parents of children with behavioral disabilities.  Sans a wheelchair people tend to turn off their compassion for disabled persons.  It’s sad and perverse that I occasionally feel grateful that my daughter has an obvious disability compared to the struggle of parents with children on the spectrum of behavioral disorders.  Certainly, for disabled and unaffected families alike, there is nothing more annoying than unwanted parenting advice.  Shocking, yes, well meaning *advice* can be unwanted and uncomfortable.  With that in mind I can only imagine how painful it is for a parent when that “advice” becomes admonishment and blame.  More obstacles lobbed in the path of a family struggling for and mourning a “normal” life.  Please don’t be a dick to these warriors.

Our lives, yours and mine, special needs or not, are already hard.  Just try your best to not make things worse for someone else.  Apologize if you make a mistake.  Be comfortable feeling uncomfortable that you don’t fully understand what special needs folks are going through.  Try your best to be respectful and you will easily be considered part of the solution.