Archives for category: Grief

“Rowan is uncooperative”

"Uncooperative?" Rowan receiving an exam October 2013

“Uncooperative?” Rowan receiving an exam October 2013

These are the words that are being used to justify the killing of our amazing son Rowan.
These are the words that the hospital is using to justify not using (not even attempting to use)  an IV catheter, or any another precautions or monitoring before the careless use of general anesthesia.
These are the words that the hospital is using to justify the unnecessary use of general anesthesia for a diagnostic procedure.
Rowan did nothing to deserve this description, other than that he looked different than you or I. Nothing other than being born with Williams Syndrome.

Rowan was happy, playing, and cooperative before anesthetic induction. He was cooperative and without tears as the anesthesia began to flow into his body.

Rowan regularly visited doctors throughout his life, and cried occasionally, just like every other kid.  He cried: 1. Once when he had to fast for 15 hours (12:00 am to 3:30pm) and cried because he was (very) hungry, 2. Once because he had an ophthalmology appointment that lasted for five hours, 3. When he was put on an infant scale (he was happy once he got big enough for a big kid scale), and 4. ONCE (out of five cardiology appts) because he was initially scared of Dr. Fripp. He did not cry for the pediatrician, Rady’s own ophthalmologist, Rady’s own geneticist, or Rady’s own physical therapist, though he did not prefer the dentist.  Oh, and he cried at the grocery store when he didn’t get the food he wanted.

Rowan sat still and happily for blood draws without a tear, received ultrasounds without sedation, and was fascinated by whirring machines. Rowan flirted with nurses, and relaxed in my lap many times when his heart was listened to, he had his blood pressure read, or he received an EKG. Rowan consistently received positive notes from his therapists and teachers about his cooperative nature and willingness to participate.

Rowan was a very cooperative child, who was given a label because he had special needs. And that label killed him.

We are beyond infuriated, but we will not meet this injustice with anger.  Instead, we will show the world the real Rowan.

Please join us, in progress:  Rowan, one year ago today:  http://rowansmile.me/one-year-ago-today/

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 careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.

Yes, I woke up angry today.  Why?

  • Because today is the eleven month anniversary since the day my son was killed
  • Because every night, yes every single night, I have at least one nightmare where I relive that horrible day, regardless of my efforts to prevent it
  • Because when I do fall asleep, it’s not for long, because my daughter still can’t sleep through the night
  • Because I pleaded with the doctors, over and over again, as loud as I could, to not give Rowan anesthesia and I was never heard
  • Because I pleaded with the doctors, over and over again, to be careful with Rowan’s life, and they promised they could and they would
  • Because the doctors promised me that Rowan would be safe, over and over again, and that my concerns were not valid
  • Because my son was killed right in front of me, and the people who killed him denied it and walked away without question
  • Because I have to defend my words, often, when I speak the truth
  • Because I didn’t get the chance to say good-bye
  • Because nobody said they were sorry
  • Because every parent who loves their child would be angry if it happened to them

We are angry.  But we are not vengeful.

An angry parent wants the hit-and-run driver who killed their child to be caught and questioned, and to admit they were driving the car.  A vengeful parent wants that driver to spend the rest of her life in jail.

An angry parent whose child was hit by a stray bullet wants the shooter to be questioned, and to admit they pulled the trigger.  A vengeful parent wants to shoot back.

I woke up angry today.  But now, as my daughter wakes up from her slumber, I will do my best to put it away, and concentrate on the happiness that is present around me.  I will try my best, like I do every day.

Please don’t ask me for more.

 

 

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.

As we wander through the world, amongst the people whom I now refer to as the “uncomfortable people”, I often wonder what makes them so uncomfortable.  Uncomfortable with grief, I get that.  A year ago, that would have been me.    Don’t know what to say, don’t know what to do, maybe it’s best to not say anything or pretend the grief is not there.

But there’s something more.  Our grief, together with our story, seems to bring about a different kind of “uncomfortable”.  The kind that makes people feel the need to be different than us.  The kind that makes people feel the need make their child different from Rowan.

Rowan had differences.  He had a bigger smile, he had a louder “Hi!”.  He spoke a different language (sign-language) while other kids learned to talk.

And Rowan was the same.  He encouraged a friend to crawl, he loved to swing, he learned to kick his feet and blow bubbles in the bath with his big sister.  He loved his family and friends, and the world around him, and made new discoveries in that world each and every day..

To those differences and similarities, people say “Of course, of course”.  We are in the 21st century, we have come a long way from institutionalizing those who have external differences.  Of course we understand.

But.. here’s where this post in going to get uncomfortable, and I forgive you if you choose to stop here.   Well, sort of.

Because what I need to tell you is that Rowan was the same.  Rowan was the same as your child.

His entire life, a common cold was the only medical ailment that bothered him.  No visits to the ER, no hospital stays, no medications.. his entire life beyond the first four days.

Yup, he had diagnostics.  Just like your child.

And he saw lots of doctors, because he was different, and doctors were interested.  In his entire life, how many of those diagnostics revealed an ailment that needed medical treatment?  How many were more than a quick look to say “Everything looks good”?  Just one.  The one that killed him.

Rowan was the same.  That’s right.  The same as your child.  The same as any two year old visiting the hospital for a routine test.  Has your child ever received an x-ray, an MRI, an ultrasound, a lab test?  Because something about your child was slightly different than the average?  Something that made a doctor say, “we just want to take a closer look.”  If yes, than your child is exactly the same.  Rowan walked into the hospital, exactly like your child, and was supposed to walk back out an hour or so later,  just like your child.

“Wasn’t Rowan sick?”  Good question.  No one will ever know.  We know the doctors said he was “healthy” up until moments before he was killed by anesthesia.  But we will never know how “sick” he was, or if he would have lived a full and happy life with a heart that was “different” just like many before him. We will never know if he would have needed a risky surgery, or if that surgery would have been a great success.  We will never know because nobody looked at his heart before anesthesia.  Nobody looked before they gave him the poison that killed him.

So I guess that I’m trying to say that I’m okay that people are uncomfortable.  I understand why people need to feel like what happened to us cannot happen to them.  I understand why they need to hold onto the “knowledge” that their two year old is safe.  Because my empty arms are a scary site, and I understand why people  look away.

I don’t write with hopes of scaring people, or vilifying the medical practices that have saved many lives.  I write with a hope that people will look at my empty arms, and with a plea that they will face the scary reality that those arms hold.  Rowan died because too many people looked away, please don’t look away now.  For each time you do, Rowan life loses just a little bit of its importance in this world.  Is that what you would want for your child?

 

 

 

Copyright 2014@www.rowansmile.me

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

 

 

Nine months ago, my daughter lost her little brother and her best friend.  The brother, that she doesn’t remember being in this world without.  The brother, who was her biggest cheerleader, and who celebrated the simple joys of each day with her.  The brother, who smothered her with smiles and hugs.

I find myself so frustrated by a world that doesn’t recognize her grief.  The principal who said, “Now let’s take the emotion out of it, and remember it’s May and she won’t be enrolled until September”.  The psychologist, who told us “she is too young to truly understand relationships, or think of his future”.  The friends, who see her happy in the playground, and say “isn’t she doing great?”  I become angry, and think, why don’t you see?!

I become angry, and think, why don’t we talk about this?  Why do we (as a society) pretend her grief isn’t there?

But then, I realize.  I have a responsibility, too.  I talk about my grief, I talk about the doctors, I talk about Rowan’s life.  I say that I keep her story private to protect her, and that is true.  But maybe some things are worth talking about.

So.. Nine months later, this is 5 year-old grief:

  • She has beautiful moments, where she hears a song, and says “That reminds me of Rowan”,
  • She has precious moments, when she draws his picture and writes his name,
  • She has moments, where she is in search of a happy memory, and needs a story shared,
  • She has sad moments, where she holds back her tears,
  • She has complicated moments, where she plays happily with a friend’s little brother, and later wonders why he is here, but hers is not,
  • She has pensive moments, when she asks, “If Rowan were here, what would he be doing right now?”,
  • She has painful moments, when other children are cruel,
  • She has ugly moments, when she screams “It’s all your fault”.  And that same child, who teachers adore and friends see with a constant smile, needs to pull my hair and punch me until the anger passes,
  • She has fearful moments, that come at night, when she wakes me up to make sure that I am still there

She questions, and questions some more.  Just like us.  Why didn’t the doctors listen?  Where is Rowan, maybe he is beyond the stars? Why don’t I have a little brother? What would he be like now?  What would my life be like now?

Five year old grief is very real.  Sometimes it comes out in a sweet song, or an angry shout.  Sometimes it comes out in a beautiful picture, in a funny story, or in a nightmare.  But it is there, and she carries it with her.. Every day, just like us.

 

On the piano, September 2014

“We used to play dead,

But not that day..

He won’t be back for the rest of her life..

I am so sad..

If he came back I would smile all the time..

..

The doctors gave him anesthesia,

If he had listened..

My mom said to me..

But if he came back he would be loud..

And the doctor said NO!

They were really sad that day because the doctor tricked them,

He gave it to him anyway and then he died..

I wish he were here…

 

Copyright 2014@rowansmile.me.  DO NOT DISTRIBUTE OR DUPLICATE

On Tuesday, I dropped my daughter off for the first day of Kindergarten.  As she sat with a big grin on her chosen blue square of the rainbow rug, I walked out the door, and I cried.

But I didn’t cry for her.

I love my daughter with all of my heart, and wish that I could spend every minute of every day with her.  If I had to pick my dearest friend, it would be her.  But I am not just her friend, I am her mother.  And she is ready.  Ready to take on the giant world of Kindergarten.  Ready to make new friends, and meet new challenges.  Ready to discover who she is, outside of my protective guidance.

When I walked out of my daughter’s Kindergarten door, I cried for my son.

My son, who at that very moment, I should have been dropping off at preschool.  My son, who was taken from my arms, after many reassurances that he’d be okay.  My son, who reached out for me in his last moments of life, and who I couldn’t reach out to in return.  My son, who wasn’t ready.

My son, whose first day of Kindergarten I had already imagined, but will never be able to feel.

I received much sympathy on that first day of Kindergarten.  “It’s tough to let them go”.. “It’s like we are feeding them to the wolves”.. “If only we could spy on them all day, to make sure they are okay”..  I wanted to scream and shout, “You have no idea!” but I didn’t.  I remained quiet and jittery, almost speechless, as they assumed my blurry eyes were for my daughter.

Because in their attempt at kindness and comradery, I saw myself.   I saw who I was last year.  The mom who would fret over six hours apart from either of my children.  The mom who had no idea.

And then, there was the one friend who stopped, and paid attention.  The friend who put her own fretting about her own son aside, and listened.  Who entered my world, as best she could, and understood that this day was about so much more than the first day of kindergarten.  Through her selfless act for me, I was able to see that in some ways, I am fortunate.  Fortunate that I am a mother who gets to experience kindergarten; fortunate that I have not lost both of my children; fortunate that I got to know the joy that is Rowan.  Our days are still pain mixed with moments of happiness, but happy moments are still there to be found in the smile of our daughter as she sits on a blue square.

Through a friend’s patience and kindness, I formed my response.   The words that would get me through the rest of the day.  The words that I hope convey my understanding that this day is tough for you, but I only wish that I could feel the way you do, and that there are others who wish they could feel the way I do.  The words that are not spoken in anger, but that I hope help give some understanding of a different perspective:

“I’m just glad that she’ll be home for dinner.”

 

 

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

 

 

 

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

It has been eight months since our lives were shattered by the loss of Rowan.

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

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

 

Eight months later..

  • We are preparing to remember Rowan on his third birthday, as we celebrate his sister’s first day of Kindergarten.
  • We continue to be in awe of the amazing support from both children and adults, who have gone above and beyond the limits of true friendship. Recently, one of Rowan’s 5 year old friends learned about time travel and said to his mom “I want to go back and get Rowan to give him back to his big sister.”  Compassion and empathy seem to come so easy when you are five.
  • We continue to receive random and generous acts of kindness from strangers. Just yesterday, a man named Steve offered a wonderful gift of time and talent to remember Rowan, having never known him. Thank you, Steve. And the list goes on, giving us hope as we go out into the world each day.
  • We have heard about the Random Acts of Kindness that people have performed in Rowan’s memory, and we have enjoyed hearing the stories. Sometimes heartfelt, sometimes funny, always appreciated.
  • We have heard from the Williams Syndrome community that an active discussion regarding anesthesia took place at this year’s convention and that the Williams Syndrome Association website continues to be corrected. Though we continue to be disheartened that we were met with silence and resistance by the Williams Syndrome Association, we are hopeful that necessary changes are being made.
  • We have met strangers, now friends, who understand that eight months is just a moment in the lifetime during which we will carry our sadness.
  • We spend each day thankful for memories that pop up at the most unexpected times, and thankful for the people who say “Remember when..” We have over two years of the most wonderful memories, that we will cherish always and hold onto at every opportunity.
  • We find, each day, small moments that make us think of Rowan and make us smile.
  • And we frolic and play with our daughter, in appreciation of each moment that we have together.

But.

  • We spend each night waking from visions that we cannot erase. The color of our son’s eyes, as they were without his soul shining out from them. The look on our daughter’s face, when the spark of innocence left her, driving home in the car as the reality of what she just saw began to sink in. The sight of our son’s blood, as it washed off my skin and down into the shower drain. The details, too horrific to put into words, of our witness to each stage of our son’s death. For Rowan’s death was not the peaceful one that some hope to imagine.
  • We try to comfort our daughter as she tries to save her brother in her sleep, and fears for our loss each day. We try to remain compassionate as she lets out her own anger and grief, and supportive as she tries to remember.
  • We remain disheartened at our inability to have Rowan’s death be taken seriously. After five months of silence, we received a letter from Rady Children’s Hospital on August 11, though the hospital still has not addressed our concerns. The documents we have repeatedly requested remain hidden. Though we would welcome the opportunity for a documented conversation with a knowledgeable source, their continued offer of a “personal” conversation with their health affairs officer, the very person who previously claimed he could not answer our questions because he had “no personal knowledge of Rowan’s case”, is something we find both disturbing and offensive. Eight months later, after we have already performed our own investigation with the generous help and candid opinions of numerous doctors, we have no need for a personal conversation with someone who admittedly does not have thorough knowledge of Rowan’s care.
  • We have received no response from the  Medical Examiner, or the Police Department, or any organization outside of the hospital that killed Rowan in regards to an unbiased investigation into his death.  Though we live with the reality that Rowan’s death may ultimately be ignored, knowing we did the best we could is important to us.  Our responsibility as parents does not stop  just because we can no longer hold our son in our arms.
  • We remain saddened and angry that the doctors who contributed to Rowan’s untimely death remain untouched, and responsible for the care of other vulnerable children..
  • We see no protests in the street; no groups taking action.  Instead we spend each day trying to find the answer to the question.. “How are you today?”  Making us wonder each time, “Did our son’s life matter?”
  • We manage to get out of bed each day, as we each deal with our own guilt, search for our own path, and try to find our way without Rowan
  • And we cry, everyday.

 

Read our story: http://www.rowansmile.me

How to remember Rowan with kindness:  http://rowansmile.me/act-of-kindness-for-rowan/

How to take action:  http://rowansmile.me/how-to-take-action/

 

It has been six months since Rowan was killed. This week, Rowan should be attending his first day of preschool.

The other day at dinner, Rowan’s sister started a familiar conversation:

Mommy, why did Rowan die?

“The doctors gave Rowan a medicine called anesthesia. Anesthesia usually makes people fall asleep, and then they wake up. But Rowan’s heart was different than ours, and he couldn’t have anesthesia. So the anesthesia made his heart stop working and he died.”
“Why couldn’t Rowan have anesthesia?”
“Because everyone is different. Just like your friend Molly can’t eat nuts. So we have to be careful because if we gave her nuts she might die. Rowan’s heart was built differently than ours, so he couldn’t have anesthesia. We don’t know exactly why. But we do know the doctors weren’t careful and gave it to him anyway, and he died.
You can eat nuts and you can have anesthesia, but everyone is different and there are certain things each person can’t have.”
“Why did they give him (anesthesia)?”
“I don’t know. Because they didn’t pay attention. They should have listened and should have known that he couldn’t have anesthesia without being very careful, but they didn’t.”
“If Rowan’s doctor didn’t make a mistake, would he have died?”
“No.”
This conversation could take place at any table. A child does not have to have special needs to be a victim of a doctor’s hubris, it can happen to a typical child as well. Your child.

In the last six months..

  • We have worked to hold onto memories of Rowan, saving every last drawing, every last item, every last picture of Rowan’s. We talk about him, and share our memories. We try to hold onto the dream that was once our reality.
  • We have tried to find peace in knowing that our story has spread around the world, and made a difference for the many people and families who have read it.
  • We have worked to plant Rowan’s tree, so that our daughter will having something living to remember him. We have made him a part of our daily life, in his absence.
  • We have learned, with much help, exactly why and how Rowan was killed, and who played each role in his death.  With this knowledge, we now begin to heal.
  • We have tried to carry on Rowan’s lesson of embracing goodness and kindness, and tried to see in the world around us as he did.
  • We have become friends with strangers, and strengthened friendships beyond what we ever imagined.
  • We have received a tremendous amount of help from those we hardly know, who have given freely without expectation.
  • We have become a part of a community of Williams Syndrome parents who have shared their stories, and exposed their hearts.  For these things, we are forever grateful.

But..

  • We have lost friends, and had others turn away to shield themselves from our grief.
  • We have tried to talk to Rowan’s doctors, his hospital, and the institutes that oversee them. We have received no reply. We have tried to get the information that exists about our own son. We have been turned away. We have tried to obtain an external review of Rowan’s case, which was promised to us.  We have been ignored.  Instead, we receive bills for the anesthesia that killed him. Instead, we hear about how Rowan’s doctors remain lauded with praise from their peers, and Rady Children’s Hospital remains one of the highest ranked pediatric heart centers in the nation.
  • We have tried to talk to the executive director of the Williams Syndrome Association. She, too, has met any criticism with silence. Instead, Terry Monkaba states widely that “The WSA wants to provide as much information as possible to all WS families.” At the same time, we receive stories from the very families who reached out to her to change the anesthetic risk information spread by the WSA, and were ignored. She also gives credit to the Williams Syndrome Association’s medical team and “esteemed cardiac anesthesiologist with a great deal of WS experience” (RT Collins) for the WSA website’s updated information, credit to the very doctors who withheld necessary information from our community, and widely spread false information.  It was very difficult for us to realize that this group, which is very helpful and supportive of the Williams Syndrome community in many ways, also contributed to something terrible.
  • We have heard from many families. Families who have tried to talk to their doctors about the anesthetic risk associated with Williams Syndrome, and been ignored. Families who have suffered tragic experiences and great losses, and were ignored by the Williams Syndrome Association when they tried to make a change. Families who have gone to doctors with research and concerns, and had doctors proceed without precautions. Families who want to be informed advocates for their children, just like we did.
  • And we have cried, and continue to do so, many times each day.

We continue to hope that our website spreads awareness among families and doctors. But in the end we are left empty-handed and empty-heartened, with the knowledge that Rowan’s death should not have been necessary for anesthetic risk to be taken seriously.
We hope to continue to remember Rowan through our lives. We hope to begin healing, and begin concentrating on his life. Someday, when we find the strength, we hope to share his joys by building a foundation.  Maybe it will be to share music and art with children in need.  Time will tell.
With Rowan in our hearts..

 

 

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.