Finding myself Thankful

 

Thanksgiving 2011

Whenever I visit Rowan’s website, I am surprised to see that it still has visitors, everyday. Visitors that Rowan didn’t get the chance to meet, and that didn’t get the chance to meet him.
Today I am thankful for the people that spoke up for Rowan. Today I am thankful for the people who want to learn.
Today I am thankful forthe people who care.
Today I am thankful for those who stop, in the midst of their own holidays, to think about others. To turn toward, instead of away from, those who are struggling with grief, with discrimination, with war, with hunger, with too many other struggles to list.
This year, I have gotten to meet and know so many of these people, and for that, I am thankful.

Thank you

Semantics (boring, I know)

Thinking of the importance of semantics this morning.

For example, the overuse of the word “mistake” if your name starts with “Dr”. I have a 6-year-old. When she does something wrong, I think of the root cause of her action before determining whether it was a “mistake” or something she should get in trouble for. Observing other parents, I think that’s pretty common.

Ego is not a “mistake”. Prejudice and discrimination are not “mistakes”. They just aren’t. And when we use the word “mistake” to describe what happens to victims of ego, prejudice, and discrimination, we are doing a great disservice to the dignity of those victims.

Or how about the use of the word “normal” when it comes to grief? Again, I don’t compare 6-year-olds’ different reactions to the world as “normal” or “not-normal”, because they are all different people with different experiences. Observing other parents, I think that is pretty common.

I read an article this morning that said: “6 months of grief is normal”.  And then the article went on to say.. oh, except if you’ve lost a spouse; especially if you’ve lost a child; and particularly if the death was a result of violence or trauma (or any of the other categories this article forgot to mention). That leaves an awful lot of not “normal” people in this world. And when we use the word “normal” to describe grief, it does a great disservice to those who don’t fall within the “norm”.

So, please, stop it. Just stop it.

Because sometimes, semantics matter.  A lot.

 

Here is what we have been saying so loudly

This article from the Robert F Kennedy Center for Justice and Human Rights sums up everything I have been saying about silence, denial and lack of action in the face of discrimination and injustice.

http://rfkcenter.org/effetto-spettatore?lang=en

“What hurts the victim most is not the cruelty of the oppressor but the silence of the bystander”  – Elie Wiesel.

“When will you be done? I just want you to be happy.”

I keep getting that question from people, and I don’t know how to answer.  Because I don’t have the answer.

If you really want to know, give me 20 minutes of your time, and I’ll try to answer the best I can.

Ready? Grab a timer (hint, there is one on whatever device you are using) and scroll down..

 

 

 

 

 

Is your timer set for 15 minutes?  Sitting down in a quiet room?

Here is your answer:

 

 

 

Ready?  Think of one of your children.  (Don’t get up, just think of one)  Scroll down..

 

 

 

 

 

Ready?   Start your timer and Scroll down when you are…

 

 

 

 

 

 

 

 

BOOM!  Somebody just killed your child. 

 

Don’t get up.  Put your computer down, your phone down,  close your eyes… don’t open them again until your timer goes off.  Just imagine it.  Really imagine it.  You will never, ever see your child again.  You will never, ever touch your child again.  BOOM!

15..

14..

13..

12..

11..

10..

9..

8..

7..

6..

5..

4..

3..

2..

1..

When you are finished..  don’t get up, the challenge is not done..scroll down.

 

 

 

 

 

 

The question isn’t for me to answer.   It’s for you to answer.  Did you do it? Could you do it?

If so, tell me, when would you stop grieving?  When would you stop fighting?  When would you be “happy”?

WAIT!  Don’t get up yet!  The challenge isn’t done..

 

 

 

 

 

 

Now call a friend, or go to the store.. talk about cookies, or the weather, or springtime, or Easter, whatever you want.. but remember!  don’t say your child’s name! don’t talk about what happened!  Shhh..

 

 

 

 

 

 

 

 

 

 

 

 

 

And then, go hug your child.  And look at your watch, how long has it been?  Did you make it that long?

(PS – If you really want to know, that is that best I can do to describe the scenario that I relive every morning, of every day, as I wake from sleep.. without the timer or the hug at the end)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My thoughts on hate

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.

Yes or No on Proposition 46, what matters is knowledge of the issue

Rowan, in the waiting room, just before he is killed

I knew nothing about this issue until Rowan was killed during a “routine” outpatient diagnostic procedure, after doctors openly ignored our repeated pleas for his safety.

In our case, my husband and I had the time, talent, and access to pro-bono medical researchers to present our case on the internet: a luxury that most bereaved parents don’t have..

Even then, after ten months of presenting a solid case of gross negligence, we are still struggling to have the hospital admit fault.  We have presented the expert opinions of both doctors and medical researchers, a 5,000 signature petition, and have worked tirelessly on seeking justice at a time when we are suffering in immense grief for our son, raising a small daughter, and trying to fulfill all of life’s other requirements.  To this date, we have not been successful at obtaining an investigation by the Medical Board of California, the organization who ultimately has the power to hold our doctors’ accountable.  (Though the Dept of Health has recently opened an investigation, their powers are very limited)

I am against making our society more litigious, but parents have no where else to turn. These cases are ignored by those who oversee hospitals and are immune from our criminal justice system. Parents need to go somewhere for help and justice, not be left to fight institutions on their own, and sadly, the civil legal system is usually the only resource available to them.

Now that I am more informed, I realize that the current cap in California does not even cover the cost to the lawyers to try a case, and because of this, cases for children are often simply not tried.  I truly wish there was another alternative to find justice, but there doesn’t seem to be.

I don’t care how voters decide on this issue tomorrow, but I do hope that people take the time to become educated.  The issue is much more complicated than this simple proposition.  My hope is that some kind of change is made to allow families to seek justice for their children.

No one in our society should be able to act without accountability.  Especially those who are responsible for our children’s lives.

http://ballotpedia.org/California_Proposition_46,_Medical_Malpractice_Lawsuits_Cap_and_Drug_Testing_of_Doctors_(2014)

My daughter asks, “Mommy, did the doctors say they are sorry?” How does a parent then say, “No, because they don’t have to.”

What happens when the hospital starts to feel the pressure?

They start throwing everyone else under the bus, and start making things up.

Please visit:  http://rowansmile.me/our-familys-tragedy/rady-under-pressure/     to view this post

 

 

1,150 people who, together, changed my day

I’ve had a bad day.  A Monday, when I dropped my daughter off at school.  A day where I came back home, and cried.  Sat on the sofa.. my “to-do” list sitting untouched.

I’m supposed to be planning a celebration for Rowan, to remember his life, but I’m swallowed up in grief and loneliness. A morning of searching the internet.  Searching for others out there that are lost in grief and looking for hope, like me.

A balloon release just yesterday, staying brave for my daughter.  A breakdown over the weekend, distancing myself from those that care the most.

Then.. a simple text: “Did you see?! 1,150 signatures!”

A simple message that says so much.  People care.  About Rowan.  About us.

People beyond those we know.  People that have no obligation to care.  People that could have gone their whole day without exposing themselves to our grief.

To those 1,150 people, thank you, for changing my day.  Thank you, for giving me the strength to continue my journey, to find light in my day.

 

Remembering Rowan (do not duplicate)

 

Please share our story with an act of kindness:  http://www.rowansmile.me

For those following our story..

We want to pass our thanks to those of you who wrote letters on our family’s behalf. Thanks to you, we now have all of the documents that we are legally able to obtain from the hospital (it is against California law for us to gain access to peer-reviewed material, for the protection of the reviewers).

Sadly, these documents continue to support all of our claims, and make us know that the claims on this website are in many ways understated. There was nothing we wanted more than to find that Rowan’s death was inevitable that day, but we know for certain that he was killed not through simple mistakes, but through negligence.

Even more sadly, the hospital has still not taken accountability for Rowan’s death, leading us to the necessity of becoming more public with our private story. Because for us, just walking away when a child is killed is not an option. Our sincerest thanks to those who have signed and shared our petition. We can only hope that it makes impact as well.

http://www.change.org/p/california-department-of-public-health-investigate-the-death-of-2-year-old-rowan-and-stop-the-unnecessary-use-of-anesthesia-on-vulnerable-children-like-him

 

 

Please don’t treat us like this is our fault, Dr. Kaufman

Thank you! Your letters to Dr. Irvin Kaufman at Rady Children’s Hospital have had some impact. Though they haven’t provided the materials we asked for, we received some documents in today’s mail.

Thought I would share a portion of the letter from Dr. Irvin Kaufman:

“I apologize for the delay in getting you all of these materials. Your insistence on only communicating by US mail and then writing to Dr. Kearns without copying me directly has hindered my ability to help you.”

That’s funny, since your package arrived to our home in less than a day (it is now 11:58 am on Sept 10th, and it was shipped on September 9th), I would assume that our method of communicating had nothing to do with it.

Perhaps this sudden ability to provide information was created by the many letters, and your knowledge of our website?  Please, Dr. Kaufman, we are grieving parents. Do we really deserve this continued defensiveness?  Your words don’t give us a tremendous amount of hope that you will be honest, transparent, or forthright.

(Update 9/2014 – Though we now have many of Rowan’s medical records, none of them have given us (or other medical professionals we have asked to review) any reassurance.  These records continue to support everything that we have stated on our website)