Saturday, March 17, 2007

#131 - My Irish Korean Family






I have oodles and oodles of training and college degrees and all that professional feathering that comes along with being a clinical social worker (now quite retired thanks to Ms. Lupus).

Anyway, I worked with many children in my life...

and had the privilege of working with adoptive families from time to time.

In spite of this...

when it comes to BEING an adoptive parent...

I often ask myself, "Do I know what the heck I am doing?"

And when my son grows up...

I am sure he will chime in and let me know how I have screwed up.

Anyway...

Little Bear and I had the late afternoon and evening alone together as Hubby had to go in to work this weekend.

We spent the afternoon feasting on National Geographic and making frisbees and having me listen to Little Bear chatter about the Pokemon guys.

Dinner time rolls around, and I fix Little Bear a sandwich tray to take with him to our front room table. I was really not hungry (and extremely lupie exhausted) so I lay down on the couch and clicked on our local news while Little Bear was out of the room.

And, of course, our local Irish celebrations are the top news for tonight. I watch rather shamefacedly as folks from the 1st ward (where my parents grew up) hail themselves as the "white Irish".

yikes.

I feel embarrassed and angry at these folks. The neighborhood has the reputation of being quite racially intolerant.

So we don't go down to the 1st ward and join in on the parades and parties.

Before I can turn off the t.v. my little guy pops in, looks at the t.v. with the folks in their plastic green party favor outfits and announces:

"I want to be Irish too!"

I felt kind of stunned.

I clicked the t.v. off, and told my son...

"You ARE Irish. Daddy's ancestors came from Ireland, and my grandmother's folks immigrated from Ireland...

so you're Irish too."

He was quiet for a bit...

and then said,

"No, Mommy. I want to be Irish like THAT."

"Oh you mean like on the t.v.?"

"YES!"

I tried to explain to our beautiful son, who bears the wonderful bloodline of his homeland Korea, that he is Irish because we are all family.

I tell him that we are so Irish that we don't think about it in a St. Patrick's day kind of way. It is our heritage... we have Irish stamped into our daily lives.

I look at his silky black hair and his delightfully shaped dark eyes and his round face...

and realize he wants to LOOK Irish.

Okay, I get it, but my heart twists around that.

I know that this moment is not about cultural heritage and pride in ethnicity or any of a kerjillion social worky things that fly through my brain. I know this is not the time to give my kid a lecture.

Our last name is Kelly, and our kid wants to embrace his Kelly-ness.

So we make an impromtu St. Paddy's day celebration in the living room.

I pull out my dad's Irish plaid cap and put it on Little Bear's head.

I have Little Bear tote his sandwich fixings back into the living room. We set up a picnic.

I get down on my hands and knees and dig, dig dig through a pile of old video cassettes... finally locating DARBY O'GILL AND THE LITTLE PEOPLE.

We pop that in, and settle down with food and dancing leprechauns and all the stereotypical Irish stuff of movies from that era.

I settle back at the couch...

look at my son...

and he is absolutely delighted.

Smiling, laughing, getting up and making up his own Irish jig during the dance scene in the film.

With my Dad's Irish cap planted firmly on his head.

I reflect:

I am so concerned that my son knows where he came from, and knows the heritage of his birthland...

that I forget...

he is just a little guy and he needs to know how much he BELONGS to us.

He notices racial differences now.

He is completely entranced by the mother of one of his classmates. This mother is Japanese. Little Bear never misses an opportunity to let me know when she is present.

His eyes lit up when I walked over and introduced myself to her.

I have no idea what my child is thinking and he is not able, yet to tell me.

I think he is working things out in his mind.

I think maybe he wishes I looked Korean like him... and I am so worried that he might think if that is not going to be so, then he wants to look "Irish" like me.

I don't know.

I don't know.

But, for now...

my kid is a high stepping Irish kid.

I told my husband about the Darby O'Gill hour here at home and asked Hubby to bring home something Irish so our kid could celebrate St. Patrick's day properly.

So when Daddy came home...

I placed a garish plastic green derby on my son's head and pinned a Luck o' the Irish button on his sweatshirt. I hugged my son and told him he is Irish, he's a Kelly and we are all Irish.

And if any kid told him different he could say that the kid is full of blarney.

HAPPY ST. PATRICK'S DAY!


Monday, March 12, 2007

#130 - Lupus Surveys

Here are some surveys from the Lupus Foundation of America:

LUPUS FOUNDATION OF AMERICA

Please consider taking a few minutes to fill out the surveys. This will help the LFA in advocating for us and increasing public awareness.

THANKS!


Thursday, March 08, 2007

#129 - Dr. Phil: The Next Step

I have checked the Lupus Foundation of America web site to see if Dr. Phil McGraw has responded to their request to provide accurate information about lupus.

There is no response posted...

So I have decided to take this one step further.

I am contacting the entertainment news television programs not affiliated with Dr. Phil's show (NBC).

Here is the letter that I sent to Access Hollywood:

To Whom It May Concern:

On Monday, March 5, 2007, Dr. Phil McGraw stated during a broadcast about Anna Nicole Smith that "Lupus is not life threatening."

He went on to minimalize the severity of this life threatening disease by claiming that it is "manageable" with treatment.
This statement was made in the context of a disclosure from one of Anna Nicole's friends stating that Anna Nicole may have had lupus.


There has been a huge outcry from the lupus community that appears to be completely ignored to date from Dr. Phil.
He has been contacted by many people who have lupus and received correspondence from the leadership of the Lupus Foundation of America.


I am a blogger who writes regularly about the challenges of being a lupus patient, and I also help people online as I am able.
I am providing youlinks to my posts, only for the sole purpose of giving you an opportunity to read the pain in the comments responses from my readers.


I represent no organization, or agency.I am an individual and feel that Dr. Phil's statements have set back lupus awareness advocacy.

Dr. Phil is perceived as an expert and he has a huge viewing audience. I feel he is morally obligated to correct his misinformation in the same public forum in which he pronounced that "lupus is not life threatening".

Thank you for your consideration in this matter.

Sincerely,

Loretta Kelly, M.S.W.

Here are the blog links:

http://journals.aol.com/lrttklly/LupusLeftovers
(AOL)


http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=113269532
(MySpace)

http://lupusleftovers.blogspot.com/
(Blogger)


Here is a link to their contact page if you would like to add your voice:

Access Hollywood

I put in the header that I was providing a news tip.

I believe that an expert with a talk show making a public statement that is inaccurate and potentially harmful is definitely news.

I also want everyone to know, that Dr. Phil has been contacted by people who do not have lupus, as part of our outcry about the misinformation he provided.

**********************************************************
You all need to know that the influx of visits and comments on the MySpace lupus blog placed us all in the top 30 of entertainment blog entries for MySpace on March 6th.

That is phenomenal!

If you have a moment to access MySpace think about adding yourself to the MySpace lupus community.

If we keep the dialogue there active...

maybe we can push this up to the top 10 and get more people to read about lupus...

which will certainly be a benefit to all.

This blog, as fas as I am concerned, has become community property.

Keep the dialogue moving and please...

if you have not already done so...

consider writing about your experiences too.

It is time to break the silence about lupus.

Tuesday, March 06, 2007

#128 - Lupus Foundation of America Responds to Dr. Phil

LFA Responds to Dr. Phil's Comments about Lupus
March 6, 2007

On Monday, March 5, Dr. Phil McGraw on his popular daytime talk show made statements about lupus which unfortunately minimized the serious and devastating consequences of the disease. The references to lupus were brief and were made in response to comments by a friend of Anna Nicole Smith, identified only as Frank, who claimed that Ms. Smith prior to her death confided that “she had a blood disorder and it was lupus.”

During the interview Dr Phil made the following comment: “[lupus] is an autoimmune deficiency. But it’s not a life-threatening disease. It’s something that is rather akin to arthritis. And it can cause very debilitating problems of the joints, heart, lungs, skin. All types of things, but it can be controlled very effectively with medication in most cases.”

The unconfirmed rumors attributing Anna Nicole Smith’s untimely death to lupus have generated considerable interest in the disease. Unfortunately, media coverage has not properly explained the life-threatening and life-diminishing consequences of lupus.

Statements made on the Dr. Phil Show which portrayed lupus as “something akin to arthritis” perpetuate the misimpression that lupus is just “aches, pains and fatigue.” Lupus can be, and often is, a life-threatening and life-diminishing disease.

LFA has forwarded a letter to Dr. Phil McGraw and the show’s other senior executives asking that they correctly educate their audience about the devastating consequences of lupus.

In its letter, the LFA offered to share stories submitted by many valiant individuals and families about how they have addressed the life altering impact of lupus, including suffering through multiple operations and hospital visits, debilitating pain and fatigue, organ failure, loss of jobs, loss of marital relationships and, in far too many cases, the loss of a loved one due to complications. In this way, Dr. Phil’s audience might have the opportunity to learn about a disease that for too long has been under-recognized and misunderstood.

Send your comments to Dr. Phil
:

http://www.drphil.com/plugger/respond/?plugID=9164


#127 - E-Mail Dr. Phil

I have sent an e-mail to the Dr. Phil show regarding yesterday's broadcast about Anna Nicole and Lupus.

I provided Dr. Phil (actually his staff) with the links to both blog entries and have requested that they review the reader's comments.

If you would like to contact the Dr. Phil show directly here is the link:

Dr. Phil.com - E-mail the Show

This is just my opinion, and I do not need everyone to agree with me, but I think we need to take a stand together as lupus patients and those who love someone with lupus.

Misinformation being broadcast on a popular television program does all of us a terrible disservice.

Monday, March 05, 2007

#126 - Dr. Phil, Anna Nicole, and Lupus




Dr. Phil is currently being broadcast, and I happen to have been watching him...

sort of the way you crane your neck and slow down to watch a car accident scene.

Just let me say as a mental health professional, that what Dr. Phil does is not ethically appropriate or acceptable in treating people.

And...

today Dr. Phil announced that

"...lupus is not life threatening."

He has a special on about Anna Nicole Smith, and as many of you in the lupus network know...

one of Anna Nicole's friends has disclosed that Anna reported she had lupus.

The friend was on Dr. Phil and stated that Anna had told him she had lupus, "a blood disease".

Dr. Phil also pronounced that lupus is not a blood disease.


Well...no... lupus IS an autoimmune disease

BUT...

vasculitis (a potentially life threatening blood disorder) is one of the major symptoms of lupus.

And regarding life threatening...

I would LOVE to have Dr. Phil sit in a room with all of those who had a loved one's life cut short by lupus... and have to listen to them.

Maybe he should just shut his mouth and work on that listening thing.

Please, folks...

DO NOT CONFUSE THIS MEDIA MONGER WITH A MENTAL HEALTH EXPERT!