Friday, August 28, 2009

Privacy

I received an email from a young lady who was quite angry that I have been posting about everything that happen to Ada, and I forgot about her privacy. Because this is a World Wide Web, so anyone can read it and she thought there is too much information.
Well, my apology if it offense anyone, but I would like to defense myself.
I didn't get much information about how Ada could progress or how to take care of her from any doctor. Mostly, the information comes from the nurses who is also, mostly mom. I created Ada's blog so her relatives in Thailand can keep track of her progress, her friends who are busy with their lives can read about her, my friends who live in every corner of the world can read about Ada, and someone who also has their love one that has Traumatic Brain Injury can come here and learn about a few things or two of how to take care of TBI patient.
I pour my heart out, to this blog, so we can cerebrate Ada's life, she is still living and I don't want to keep her in her room, in her house away from the public's eye.
Until she can read and write and speak for herself, I have an obligation for my daughter to be her voice, to be heard and to remind everyone that she is still here.
Hugs
P.S. I just read from other blog that the hormone did have an effect on how much a person with TBI can progress. If I had known this last year, I would have asked the doctor about it because Ada did makes more progress after she starts her period again. Also there is a study about the anti acid medicine that is normally given to TBI patient with feeding tube, might also block an enzyme that important to the brain. Again, Ada did not take Nexium anymore and she is doing fine. Without sharing these information, how can we keep track and take advantage of the Modern medicine. After all, I learn pretty much how to take care of Ada more, from the World Wide Web, than the doctors or therapists.

23 comments:

Nesiejean said...

I wish I could reply directly to the person who sent you that email. I would tell her to mind her own business and keep her opinions to herself.

You're doing a fantastic, superhuman job here, Ponsawan. If sharing via a blog is the easiest way for you to update your family and many, many web friends, then that's exactly what you should do. Anyone who is offended can stop reading.

koreanirishmom said...

If one would read the paragraph in the upper right hand corner of this blog... created for Ada's friends,family, and strangers who happen upon it, you would read the reason and decision Ponsawan began to write of all of her fears and joys. She wanted to do this so that when Ada could understand she would have an internet diary of her struggle to become the woman she and her family had worked so hard and lovingly to help her find her full potential.

Ponsawan has been able to express herself and allowed others to try to put into words what Ada's days are like...one of the things the family always wanted was for the public to "see" what drunk driving can do to, not only the victim but all those who love that person. So often we think we know what TBI is or what it looks like...believe me unless you are a health pro. or someone who has been touched by TBI...you don't know!!!
Ponsawan, continue to share, learn and celebrate with this blog...when so many others have given up or faded away Ada will always have her greatest strength...YOU.

Love,
Ardis

Anonymous said...

Ponsawan - I am soooo thankful that you are sharing about Ada!!

It makes a big difference in how I think about what really matters in life.

Please continue to share from you heart, because it touches other people's hearts all around the world - and that's a good thing!

((hugs))
E.

AnJa said...

Hi, I´m from Sweden, and I found you years ago through your polymer clay work. I have never commented before in Ada´s blog but I have followed it from the very beginning. Why read about a persons tragedy that you do not know? I do not really know, but I´m so happy to see the developing she is doing, humble to the very strong person You seem to be and I think many of us need to be aware of what small difficulties we are dealing with compared to You and other people in Your position. I hope you continue to write about Adas life and I hope it is OK that I go on following the blog. Many hugs and excuse for my bad english.

WonderfulWire said...

Pons, what you are doing and sharing with us concerning Ada is nothing short of life-altering inspiration!! We need to be a part of such things for so many reasons... the foremost being, to learn compassion and be encouraged in the hard things of life! You are doing a great job and countless people's hearts are being blessed, challenged and encouraged by Ada's life!

Big hugs to you!!

Anonymous said...

Like AnJa from Sweden, I have been following your blog from Hungary. I check out how she (and you) are doing regularly and am happy for all news as if I knew you personally. I also wonder your strength and ability to cope. And yes, your blog puts our mind right when we think we have problems.
Health professionals can also profit from your blog. Your descriptions may not be very scientific but contain lots of information. And what you write down in the U.S. may give an idea to someone at the side end of the world.
I wish all the best to Ada and strength to you to continue being her guardian angel.

Fruzsa from Hungary

Anonymous said...

I admire your courage Ponsawan. Your are doing a great service to your daughter as well as others who are currently facing adversity. Stay strong and know that many, many people draw strength from your positive attitude and unwavering commitment to your family. Your honesty is an inspiration.

Domitsu said...

I follow you from France. Every day I come to see the progress of Ada. I think of her and I admire your courage...I think this blog is very important for every body. We can see that there is always some reasons to hope...we can see that there are some exceptionel persons on this earth.
Thank you very mutch ...
I wish the best for you and Ada.
Excuse my very bad english...

Rhonda said...

You know I check this blog once or twice a day and am THRILLED everytime you post with updates of Ada's progress, your thoughts and feelings. You are an amazing woman and a great mom and are doing all the right things with Ada. Ada, you and your family are in my prayers everday.

Rhonda

meinMelbourne said...

My dear Ponsawan,

The information on Ada's blog has been our 'lifeline' since Ada and her family became victims of that vicious accident. This information has helped us focus our prayers, and we celebrate every small step Ada has made.

Your honesty and transparency has been our inspiration. Your strengh and courage, your persistence and determination is reflected in this blog. It has shown us that in the darkest days of life, there is always light at the other end of the tunnel, as long as we don't stop walking.

This internet diary is not only a precious gift for Ada, and for us who follow the blog daily, but it is also a medical anthropology narrative. It provides an insight and firsthand information about TBI, from TBI sufferers that has never been available before.

WWW is the most exposed public space imaginable. Anyone can voice their opinion about anything. I can understand where those offended about privacy issues come from.

The thing is, you don't have to be bothered by them, Ponsawan. Please continue to walk the path you have walked, because we are walking with you.

Anonymous said...

My Dear Ponsawani,

Everyone has the right to write in here. But, I wonder why someone has to express such negativity. I wonder if they have a clue of what is like. You do NOT need negative and judgmental comments like that one. Obviously that person doesn't know you, the mother, the daughter, the wife, the friend,the sister, the artist, the architect, the landscape architect, the human being. If this Web site bothers you, there is no need for you to read it. Go on to something else that pleases you.

Those of us who have known Ponsawani since she was younger than Ada, and Ada since the day she was born, WANT this Web site. We have no idea what it is like to live with a person with TBI, but we are learning through Ponsawani. We identify with you, Ponsawani, and Ada through your sharing and Ardis sharing when you were in Thailand.

This blog is VERY MUCH NEEDED and there are so many reasons for it. Many reasons have been stated and there is no need to state them again. While I thought it will be a vehicle for me to give you (Ponsawani) strength and for you to know that you are NOT ALONE and that we LOVE you and are with you every step of the way...it worked the other way around.

It is YOU the one who teach us every day:
Ponsawani, YOU and Ada:
* give me strength with your perseverance and love.
* remind me how precious relationships are and what friends are for.
* show us why universal health care is needed and how it is a fundamental right.
* remind us that there are so many incompetent and inhumane physicians in this country.
* show us that there are also some excellent caring physicians like the one who wrote the book (Dr. Taylor?) and some very excellent and caring nurses and therapists while some others should leave the profession.
* show us that there is HOPE in life.
* remind us that our problems are sooooo SMALL and INSIGNIFICANT when we put things in perspective with what YOU are going through.

And on and on and on... There are so many reasons why this Web site is a blessing. From Florida, I can stay in touch daily with details that calling on the phone would have made it so difficult.

Keep it going. It helps Ada, it helps you, it helps other families with a patient with TBI, it helps us to stay connected with you and Ada, it helps us grow together as ONE. Do not let this bother you. The outpouring of supporting e-mails comparing with one judgmental one speaks for itself. For months you had to tiptoe around everything because of the trial. Now it is time for those in the world who want to read to know how devastating is to drink and drive and what a HUGE impact it can have in so MANY lives. You are creating awareness too!

LOVE YOU LOTS, KEEP IT GOING, MY FRIEND!

Anonymous said...

Please do not stop this lovely tribute to your daughter and all that the two of you have accomplished together. It reminds us all of the power of love.

Anonymous said...

Friends, family, strangers alike get strength and courage from this blog. I know Ada a lot better than most and she would want her story out there and everything shared for her family. Ada is someone who always cares about others first and she would want it this way. I love you Ponsawan!

Anonymous said...

Ponsawan ... I wouldn't worry about an email from one annoyed person. They obviously don't have a clue on why you are writing about your amazing daughter and your daily journey to healing.

Just from the posts here, there are people from all over the world reading your blog who really care about you and Ada!

Don't stop.

Anonymous said...

I check this blog every day. Your account of Ada's progress is important to all of us. I am certain that some of the very personal information can help others.

Vicki Crim said...

Ponsawan....Thank you so much for keeping on keeping on. As numerous have already stated....you and Ada are inspirations to many. Don't take the negative comments to heart. I don't know what's wrong with that person, but they are not worth your tiniest consideration. I admire you so much and hope and pray for continued improvement in Ada's life. She's come so far and I'm sure she'll keep on keeping on as long as you do. With all sincerity.....Vicki

Anonymous said...

Dear Ponsawan,
I can not say it any better than those who have already commented. I knowhow hard you have worked and the heck with that person who thinks you have said too much. The rest of us don't. You just keep on being your wonderful self and sharing Ada's life with all who care for her. You are doing so much good. Just look at how all these responses are coming from all over the world. You can't change the mean, unhappy people in the world. You can only make a difference in your own little corner.

Anonymous said...

I also stumbled upon this blog while trying to go to another blog also called dear ada.
I am glad I did, I follow Ada's progress, and, yes, your blog reminds me that there is love in the world, and that it is powerful and lasting.
I pray for Ada and follow her recovery, and I am grateful for your blog. You are a wonderful mother and your love and dedication, and this blog, are inspiring.

Macey Leigh said...

Ponsawan,
I'm so glad that you keep us all informed about Ada's progress on here--You are her voice, and our way of knowing whats goin on in her life. As you know, Ada and her LIFE have inspired me so much. I am a different and better person because of the lessons Ada has taught me. I miss you all very much, and I treasure the time that I was able to spend with her last year before I moved for school. Those days meant the world to me.
Please hug her for me, and tell her I miss her.
xo
Macey

Kimequa said...

Pansawan, I wanted to let you know how much I really appreciate all of your posts about Ada. Because it has been a long time since I've seen her, I get most of my information from your blog for her (and yes, sometimes Archie or mutual friends). I get so excited about the improvements that you talk about that I always share them with my mom right away, and I call other friends and remind them to pray for her whether she is having ups or downs. I share my joy in all of her tremendous improvements and my concerns as well. What a blessing it is to see an occasional photograph or video of Ada/your family! And especially for your family in Thailand--how else would they get to see her beautiful face so often?? What a huge blessing this blog must be for them as well. And I know there are a lot of people who love her very much but are not close enough friends that they would feel comfortable stopping by for a visit. Friends from school. Friends who live far away. What a blessing for them to be able to see her progress and struggles..and to know what she needs prayer for as well..!

As for that person who sent you the email.. Everyone handles things differently. They are probably a very sensitive person and kind hearted. But they do not know Ada in the intimate way that you do. I believe that you have a good understanding on what would and would not be offensive to Ada. I remember back when her head was shaved and swollen and she was looking quite different than normal, you would not post photos (only private emails) because you were being considerate of her privacy. Now that she is doing better (and gorgeous as ever!!), I can't imagine her being offended by you sharing bits of your lives through a blog that your LOVED ONES read. It's not like TMZ is going to be sharing any of these photos with seedy tabloids-haha. Ada has a Myspace, a Facebook. She has posted many photos online and used the internet as a means to keep in touch with her loved ones. Why would she be offended that you were doing the same thing?

I hope you didn't take that email too much to heart, Pansawan. It is good to be concerned with Ada's privacy and her feelings--of course! But also, be realistic about it, not paranoid about it.

I hope you have been encouraged by her friends/family and not discouraged by that email.

Please know how much it means to all of us that you offer this wonderful blog for us to keep up with !!!!!

Anonymous said...

I have been reading this blog for over a year, I read the beginning too. I was searching for info on polymer clay, and found it. I am encouraged by you, and also Ada's challenges and progress. The video of her eating the sweet potatoes I think it was, was so awesome to me. You are one of my hero's in life Ponsawan. Thank you for your courage and your servants heart. Your daughter is so blessed.
Lisa Martin

Anonymous said...

Ponsawan,
If not for this blog, fewer people would know about Ada, and therefore, there would be fewer prayers. How can that possibly be misunderstood?

Anonymous said...

You are doing an awesome job. I hope you and Ada the best of luck.