Archives for category: Grief

The frustration..

Just the other day, I received an email from a parent, saying how she wished there was an available list of precautions, that parents could present, when anesthesia was being considered for a person with Williams Syndrome.  There is a list of precautions, and it has been available since 2004, nearly a decade before Rowan was killed.

The 2004 protocol for use of anesthesia in patients with Williams Syndrome is listed here: in our Report to the California Medical Board

Reading this note, I also learned that the main WS support group in the United States is still under-publicizing the risk (despite research like this: Research from Australia in much of the rest of the world) due to fear of “liability.”

After reading this, I was left with a wide range of emotions.  I felt overwhelming sadness, that our message (and that of others) has not been heard.  I felt anger, toward the hospitals and the WS leaders in the US, for what, at this point, could only be a conscious effort to withhold information from individuals with William’s Syndrome and their caretakers.  I felt devastation, that Rowan is not here to show his own worth to those who are ignorant.  I felt immense grief, for the horrific death of my beautiful son, and the inconceivable knowledge that the silence surrounding it continues to prevent his death from helping others.   And I felt alone, not part of any community.  Instead, an outsider – whose status as bereft, frustrated, and “just a mother” looking for blame – prevents me from finding a place, or being heard – just like before.

And the hope..

I also received an email that told a story.  The story goes like this:

A man looked at Facebook, and saw our petition. That man showed his wife, and she went to our website. They read our story, and cried, and they understood.  They understood every part of our story, from the medical negligence, to the special needs discrimination, to the importance of my “No”.

The woman is a person who asked herself, “What can I do?”, and bravely decided to do something.

This woman happens to be visiting the Washington DC next week, and she is taking our story with her.

She doing what she can.  Maybe she won’t be able to do anything, but she will try. She will try to get it into the next person’s hand. She will try to play her part.  And maybe, we will reach one more person, who will in turn, reach one more.

To that person who is the friend-of-a-friend-who-knows-the-man, to the man who showed his wife, to the wife who is going to Washington, I am thankful.

I have seen a wonderful example of how each small part matters, each piece adds up to a bigger piece.   And someday, all of those pieces could add up to a whole.  I have seen how a simple card, or a simple share, can make a big difference.

And I have seen how, through the frustration, there is a glimmer of hope.

On its way to Washington DC:  Rowan’s Informational Page Final

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Camping with Rowan

This weekend, we went camping in the rain. In the morning, as the sun came out, a sister and brother wandered into our campsite and peered into our tent to say hello to our daughter.
We emerged for introductions and to play, and as the little brother followed Dan, the two girls went about the typical “I have that, too” introduction that six year olds do. The morning was going along smoothly, and as we prepared breakfast, C was happy to have two new friends. Eventually, her new friend (whom I’ll fictionally refer to as “S”), picked up my phone off the table, pushed the button, and saw the photo of C and Rowan.
S: “C has a little brother, too. Where is he?”
Me: “He died”
S: “Why?”
C: “The doctors gave him anesthesia and they weren’t supposed to”
S: “That is sad”
C: “Yeah”
S: “I share a room with my little brother”
C: “Me and Rowan shared a room, too”
S: “Let’s go play in the meadow”
C: “Okay”
They wander off, exploring, playing on logs, saving the Earth picking up trash, and taking turns pulling S’s little brother around with a bungee cord (don’t ask me why, it seemed like a fantastic idea to all three of them)
Next, they all wander to the campsite next door, and run into S’s mom.
S: “Mom, C has a little brother that died”
C: “The doctors gave him anesthesia, and they killed him”

As I overhear, I hold my breath. The world seeming to slow down around me, as so many previous scenarios swim through my mind. Will the mom say something to try to dampen or change reality? Will she pull away C’s new friend, leaving C to need comfort at another disappointment? (Yes, these things are the norm, rather than the exception)

“That’s very sad” says S’s mom. And both girls move on to the next item on their list.
A little while later, we parents meet. Parent introductions that are always more difficult than kids’. Eventually, our story gets mentioned. I slip them our card that says boldly ‘Special Needs Discrimination in Healthcare’, and I hold my breath again. She reads it, puts it in her pocket, and says “I’ll read it”. “How long ago?” she asks, followed by “Wow, that’s just yesterday”. “Yes”, I answer, “it all depends on your perspective, but it feels like yesterday to me.” And a few awkward moments of us all staring silently into the meadow.

A little more small talk, and then the conversation becomes easier. We chat about the storm, and about how we each bought our cars for camping with two kids. We chat about work, and school, and the trips we took with Rowan. They tell us how their toddler is always hungry, and C talks about how Rowan always tried to eat everyone’s food.
And it was easy.

As the day passes, each family packs up our belongings, as the kids imagine they are gazing at the stars.
And, instead of witnessing their relief at the exit, I’m handed a paper with an email address, “Let’s go camping again”.

Friends, afraid, become strangers.

And strangers, not afraid, become friends.

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I hate a lot of things in life.
I hate that two doctors, together, killed my son.
I hate that they didn’t see him for who he was, and I hate that they didn’t see his worth.
I hate that they didn’t listen to me when I tried to protect my son.
I hate that even Google is talking about the things that Rowan’s own pediatrician refuses to.
I hate silence, and the crimes that result.
I hate apathy, and the destruction that happens because of it.
I hate that I had to teach my daughter about death.
I hate that I have to teach her everyday about silence, and apathy, and why bad guys sometimes get away, and why some people don’t have to say they’re sorry.

And I’m UN-apologetically angry.
I’m angry when someone is silent, and I will not tolerate it.
I’m angry when someone is apathetic, and I will not tolerate it.
I’m angry when someone won’t say they are sorry, and I will not tolerate it.
I’m outraged when someone hides his crimes, and I will not tolerate it.
I’m outraged every morning when I wake up envisioning my son’s death, that I witnessed, all over again.
I’m angry every night when I cry myself to sleep.

But I look into my daughter’s eyes, and I can’t teach her to hate.
I won’t hate all doctors, because I can’t teach her to discriminate.
I won’t hate people who are silent, because I can’t teach her to give up her own voice.
I won’t hate people who are apathetic, because I can’t teach her that she can’t make a change.
I won’t hate those who don’t take responsibility, because I can’t teach her to run away from her own.

I am angry. And will teach my daughter that there are some things that are wrong.
I am outraged. And will teach my daughter that there are some things worth being furious about.
But I will not meet hate with hate. Because if she learns that lesson, then I have lost her, too.

 

 

 

Want to make a difference?  Visit How To Take Action

To learn more about current research documenting Special Needs Discrimination in Healthcare visit: Special Needs Discrimination – Healthcare

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for an equally unnecessary and “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

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Innocence and joy

Radiating life and worth, curiosity and love

There for everyone and the world to see.

I saw it, felt it. Vibrantly, from the moment I first held you ….. how could you not?

But, those who didn’t …. couldn’t were always there.

Weighed down by the barriers in their heads, blocking out your light.

Only a little was let in, weakened and changed by false assumptions, poisonous stereotypes.

I only even saw your light, not the scales on the eyes of others, the dark wax in the ears of the deaf.

But, that light! What joy! I will carry it forward for you forever.

For current research documenting special needs discrimination in healthcare, please visit:  Special Needs Discrimination – References

Want to help?  Visit: How to Take Action

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

We didn’t have a choice.  We didn’t.  We simply didn’t.

Yes, in hindsight, we could have taken Rowan to a different town, or Australia.. where proper precautions would have been taken.  If we had known what we know now, we certainly would have put our entire family on that plane.

But I read stories like this one.  I read lots of them.  And I realize that this story isn’t about whether you agree with Cassandra, or her mother, or the doctors.

It’s a story about who is in charge.  And it’s not the parents:

http://www.economist.com/blogs/democracyinamerica/2015/01/medical-consent?fsrc=scn/tw/te/bl/ed/cassandrascatch22

And it wasn’t me.

I pleaded, I begged.  I made phone call after phone call.  Talked to doctor after doctor.

Do it without anesthesia.. “No”

Make him an in-patient.. “No”

Do more tests beforehand.. “No”

Find a better way.. “No”

Listen to me..NO!

“We are one of the best hospitals in the world.  We know what we are doing.”

“There is no other option.”

When they didn’t listen.. they didn’t just take away my son.  They took away my voice.  They took away me.

When people turn away, or don’t take action.. They don’t just turn away from my son.  They don’t just turn away from my loss.  They turn away from me.

And I matter.

“I’m not asking much… just your voice!” the sea witch told Ariel.  Is that really what it takes to live in the human world?

There is absolutely no relief when a bereaved parent can say I told you so.  It only causes more pain.

An article on alternative, and better, methods for heart imaging:

http://www.utsandiego.com/news/2015/mar/14/ct-scan-stress-test/

Outraged?  Visit How to Take Action

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent.  It is okay to post a link to this page.

Today has been a strange day.

This morning I was angry, because a friend (a nurse) posted about how she got away with running a stop sign because, as the cop who pulled her over said, “I never give out warnings but I respect your profession and I understand you are tired so have a good night” . And fifty of her friends liked and applauded her.. Did she not realize that this cop just stated the very reason that we were not able to find justice for our son’s death? (I contacted the police department five times over the past year, and they never responded). Did she not realize, as she concentrated on her successful get-away, that I have met the mother whose child died because someone else “slowed down” for a stop sign? (In actuality, she is a nice person, who has been very supportive since Rowan’s death, and would probably never guess that her post would lead to any adverse reaction.  In fact, I wouldn’t have given the post a second thought just one year ago).

And this morning I was intensely sad, because I finally ate the cupcake that my son should have eaten on his 3 ½ birthday.

And then, I put away everything else I was supposed to do today, and I spent my time reading.

I read an essay from a teenager in foster care, whose social worker raped her repeatedly, and got away with it without reprimand, even after she tried to press charges. After her story, she stated that telling her story “has made me sure about myself”.

I read an article about “getting through grief by hanging onto yourself”, and I read a post about the “gifts” that grief gives us.

And then I realized something. Something that I have worked on realizing for the past few months, but I realized that I hadn’t quite gotten there.

Oftentimes people say that grief gives them the ability to love more freely, or more openly. But I don’t think that is true for me. Rowan gave me that ability when he was born. I have never loved the world around me more than when I saw it through his eyes. I will never love the world more openly than when I felt the warmth of the smiles that came to people’s faces when he greeted them with a loud “Hi!” and a wave from my arms.

But my grief has given me a gift. It has given me confidence, just like the teenager in foster care. It has given me a voice that was always there… But is now even stronger than before.

It has given me a voice that has made some turn away. It has given me a voice that has drawn some closer. It has given me a voice that is not always pleasant. It has given me a voice that is confident. It has given me a voice that I am proud of. It has given me a voice that I am thankful for.

It has given me a voice that matters – for me, for my daughter, for Rowan, and (hopefully) for a few others.

Grief has given me a gift, the very same gift that allows me to hang onto the “myself” within my loss… my voice.

Dear Grief, I will never thank you for this gift, but I will do my best to use it wisely.

 

 

 

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent.

2014 was long, and painful.  Every single day of the entire year, I was empty.  Some moments were happy, some were angry, some were desperately sad.  Some were lonely and isolating, and some were filled with love. But every moment was empty.

Yet, I am thankful for 2014.  Because I had the rare opportunity to see the world.  Really see it in a way that I had never seen it before.  I had, of course, witnessed it.  But I had never really seen it so clearly.

I saw courage.  In people that really listened.  In people that pushed their own boundaries.  In people that took risks.  In people that looked my daughter, and myself, in the eyes.  In people that stood by our side.

I saw fear.  In people that couldn’t hear the truth.  In people that couldn’t act.  In people that needed to make Rowan a child that was ready to “pass on.”  In people who took hope that this couldn’t/wouldn’t happen to them, because they somehow would have done something that we didn’t.  In people that look at the ground.

Both courage and fear, completely transparent, every day of this year.  That is something to be thankful for.

I thought that, coming into this year, I would not mark the passage of time.  But then, I realized this year.. the year 2015.. may be my opportunity to make the most important New Year’s resolution of all.

This year, I will find my voice.  I will speak my truth, without fear…

 

 

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

Rowan being a very cooperative 2 year old, just a few weeks before he was killed

Rowan being a very cooperative 2 year old, just a few weeks before he was killed

Special Needs Discrimination in Healthcare.  It’s real, just like it is real throughout our society.

I was naive.  I had seen it in my everyday life with Rowan..  in the occasional act of unnecessary compassion from a friend, in a therapist who thought his diagnosis defined his capabilities, in the surprised look of an acquaintance when we said that he would be attending her child’s preschool, in the occasional look of pity from a stranger.  But I never expected to see it from a doctor.  Rowan hadn’t ever been sick, so I didn’t have the chance to learn what other parents already knew, and I was blindsided.

We believe that special needs discrimination is the ultimate reason why our son was killed.

After learning of the CDPH report, we believe that Rowan was discriminated against because of his diagnosis, and therefore killed.

We believe this because:
1. Based on Rowan’s special needs diagnosis (not on Rowan as a person), Dr. Raymond Fripp labeled Rowan as “uncooperative”
2. Because of this label, Dr. Raymond Fripp ordered the use of general anesthesia (which was dangerous for Rowan) for a diagnostic procedure
3. Because of Dr. Raymond Fripp’s label, Dr. Kathleen Kaya was not required to, and did not, provide precautions typical in all general anesthetic procedures
4. Because of #2 and #3, Rowan was killed
5. And finally, because Rowan had a special needs diagnosis, the hospital was able to justify his abysmal care. Because Rowan had special needs, the California Department of Health was able to support the hospital’s justification, and the Medical Board of California was able to ignore it.

And we ask, why aren’t we talking about it?

If I am truthful with myself, I realize that I have even been guilty of special needs profiling at some level.  Have you?  I was lucky enough to have Rowan, who gave me the opportunity to see the world from a different and much better perspective. I hope that you have taken the opportunity to see the world from his perspective, too.

For current research documenting special needs discrimination in healthcare, visit:  Special Needs Discrimination Healthcare – References

Want to make a difference?  Visit How to Take Action

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient procedure.

Twelve months after Rowan was killed, we mark the end of a chapter.

We now know, for certain, that Rowan was killed.  That Rowan was not meant to die that day.

We now know, for certain, why Rowan was killed.  Because we, as Rowan’s parents, were never heard.  Because Rowan, our amazing son, was never seen.

We now know, for certain, how Rowan was killed.  Rowan went into cardiac arrest, along with at least 40 other people with William’s Syndrome, as a result of the interaction of anesthesia with his body.  Scientists will continue to work out the minutiae of this interaction, but the minutiae is not necessary to know how these wonderful people were killed.

Twelve months later, we have lost a battle.  Rowan’s death will serve as another example of a wrongful death.  Another example of doctors and hospitals hiding behind the strength of their institution.  Another example of people with disabilities not being seen for who they are.  Another example of parents trying to fight a broken system and losing.  Another example of nobody saying sorry to a five year-old for killing her little brother.

We have lost a battle.  But losing this battle didn’t really matter, because our family had already lost our war.  Each day of that battle, we walked empty handed, without our son in our arms.  Each day, we knew that we had already lost everything that mattered, our most precious right as parents already taken away.

For those that choose to continue, we will keep our how to take action page updated, and welcome the use of our story to conquer the bigger problems for which Rowan’s death serves as a mere example.  We hope that, if you do decide to continue this battle, you will choose to do so in memory of Rowan.

For us, we will continue our peaceful protest, until the day that we can no longer speak.  We will continue to remember Rowan, and share his story.  We will remember loudly the wonderful life that we had with Rowan, and our joyful child that was taken from us too soon.  Please join us, in always remembering, and take every opportunity, along with us, to REMEMBER ROWAN LOUDLY.

Copyright © rowansmile 2014. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure. It is okay to post a link to this page.

After reading today’s news with great sadness and confusion, I was somewhat relieved to see this article talking about how official reports of medical errors are woefully inadequate:

http://commonhealth.wbur.org/2014/12/medical-errors-massachusetts-study

This statement in the article was the one I found most disturbing:

“Researchers interviewed people who had been hospitalized in 16 institutions about their own experience and checked it against medical records. Twenty-three percent said they’d had at least one “adverse event,” although only about half of those were documented in their record.”

Though much of the article was more disturbing than uplifting, I am glad to see the positive action and great efforts that are taking place in Massachusetts.  Though too late for our family, we hope to see the same efforts taking place in California someday.

 

PS – For those that may wonder about this part of the article: “.. acknowledges that nondisclosure hasn’t worked — that involving only health care insiders and state bureaucrats is not getting the job done. “We do need to get beyond the inside game,” she says. “The doors need to be thrown open and other voices need to be heard — particularly the consumer voice.”  But that doesn’t mean, she adds, that names and details of particular errors need to be made public.”

Please know that we completely agree, and we do not feel we make this statement in a hypocritical manner.  Please know that the original version of this website contained no names, and public disclosure of Rowan’s doctors and hospital was only done after many months of attempts for transparency.  This disclosure was only made after we felt that our option to keep their identities private was exhausted.  We continue to feel that the only way for the hospital and doctors to address this act of negligence is to expose their names, and we hope that a time will come when we feel safe removing their names from this website.

 

Copyright © rowansmile 2014. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.

 

 

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