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Yesterday, I read a headline “Joan Rivers clinic investigated by the NY department of health”.  I was livid.  For hours.  I screamed, and I punched things.

But now, I am hopeful (and still a bit angry).

Joan Rivers’ death should be investigated, whether her death was the fault of the clinic or not.  Just like all other deaths outside of a medical facility.  Why not inside?

I was furious: Why her?  Why have I been fighting for months to get anyone to pay attention to my son’s death, and her care was under investigation before she even died?

But then I read more, and I read the comments under the article.  The comments saying “what about the other families?” and “where is their investigation?”.   And I realized: there are people who understand and are compassionate.  A lot of them.  To those strangers, I say thank you.  In your brief comment, you said to me that my son’s life did matter.  Just as much as Joan Rivers’.  Thank you.

Maybe this inequality will serve a  purpose.  Maybe, just maybe, a discussion will start.  Maybe, just maybe, that discussion will continue.  Thank you, Joan Rivers, for that.

http://www.foxnews.com/entertainment/2014/09/04/joan-rivers-clinic-investigated-ny-dept-health/

In hopes the some day, justice will be served for Rowan, and we will be able to concentrate on our amazing memories with the beautiful being that changed our world.

Please share our story through an act of kindness:

http://rowansmile.me/act-of-kindness-for-rowan/

 

When parents act against doctors’ advice and are perceived by the medical community as putting their child in danger (whether rightfully or wrongfully), there is a police chase, a hearing, and the parents are separated from their son .

When doctors act against parents’ concerns and put a child in grave danger, no one pays attention.
My son was killed when an inappropriate procedure was performed by doctors, despite our concern that the procedure could put his life in jeopardy. But we are ‘just parents’, so the police turned the other way.

Why did I allow my son to have this procedure?  Because they told me he would be safe, and I was scared not to.  If I took the chance and Rowan ‘dropped dead in the playground,’ there would have been an investigation, and my parenting would have been questioned.   I would have been accused of “acting against medical advice”, and then what would have been the consequence?

http://news.uk.msn.com/uk/ashya-king-reunited-with-parents

 

An application for Rady Financial Assistance Program to help with our medical bills?!?!  Gee, thanks for offering to help us pay you for killing our child!

 

Rady

We get this question all the time, and people who are afraid to ask, wonder.

It’s okay to ask.  We did, too.

We were so frustrated, so at our wits end, that we sought the help of a dear friend, and she brought us to her dear friend:  a lawyer.  Lucky for us, this lawyer did not have a shred of the qualities that lawyers often get labeled with.  He was kind, he was patient, he listened, and he listened some more.  And he knew Rowan.  He had never met Rowan, but he had heard a lot about him, and our family, since before he was born.

He talked to us for hours.  And hours.  At 5:00 am, with a cup of coffee, because our daughter was asleep and safe from our voices, our anger, and our tears.  And he did it all without asking for a single thing in return, except to hear more about Rowan.

And he understood.  Our goals for ourselves.  Our goals for change.  Our goals for kids just like Rowan.

I wish that I could shout this man’s name from the rooftops, but I won’t, because I don’t think he wants me to.

We now believe that lawsuits rarely elicit change.  Many end up in mediation, with survivors still wondering the truth of what really happened, and left, after (sometimes) years of  recalling brutal memories, silenced by confidentially agreements and wondering whether their lawsuit made any impact on the doctors, hospital, or the medical system.

We have met many bereaved parents who filed lawsuits, won, and still feel years later that no change was made. For example, we now know of another child who died at anesthetic induction. That family filed a lawsuit, and then had to sign a confidentiality agreement when the lawsuit was complete. Could Rowan still be alive if their story had been allowed to be shared widely, and their hospital had been transparent? Probably. Yes, their lawsuit elicited change in one hospital, but it did nothing for Rowan just a few states away.

No, it doesn’t always happen this way, but it happens a lot.  Certainly more often than we had ever imagined.
We think that this video puts a bereaved parent’s perspective into words far better than we could.  Though our situations differ vastly in some ways, many of the sentiments are the same:

We don’t know what the future will bring, but we know that a lawsuit, if necessary, would be one of the last options we would choose.

Thank you so much for your donations in memory of Rowan.  Rowan was looking forward to starting preschool with his sister, and his first day should have been Monday.

The preschool introduced Rowan’s music box to the children yesterday, paid for with your donations, and completed with much care and hard-work from the preschool’s director and teachers.  We do not have the words to express how much this means to us.

I wish we could have captured all of the instruments in the photo.. this box is deep and packed full!

I wish we could have captured all of the instruments in the photo.. this box is deep and packed full!

Rowan's music box Rowan's music box at preschool

There is now a sharing button for facebook on our main page, and you can click:

Please read our story  for a printable way to share.

..for reading our story.  With Rowan in our hearts..