Re: Ignorance

May 7, 2004

I forgot to share with you that Hannah is not seeing impaired....and the next 3 weeks was a state of limbo...until the next pediatric opthamologist we saw was able to diagnose her with BPES...what a relief to be able to have something we could now research on our own...and a term that is used universally so that we could ask questions as well.

Thanks again...

DebbieDebbie Weston From <debweston@...> wrote:

I wanted to share some of the things we have been through concerning our beautifully amazing daughter Hannah. My daughter came 4 weeks early....and unfortunately we (Hannah and I) both had to be airlifted to a neonatal intensive care unit (NICU) because her lungs were not fully developed yet. She was hooked up to a respirator for 3 days and discharged after 9 days.

While at the NICU, I asked if we could get an opthamologist to look at her eyes. We noticed that she was unable to open her eyes and were very concerned about it. The doctors and nurses were not able to diagnose her with BPES...because they had no experience with it....so their response was basically her eyes are that way because she was premature.

When the opthamologist arrived...Hannah was only 4 days old. I was still recovering from all of the excitement of giving labor...getting on a propeller plane and flying 2 1/2 hours directly after giving birth...watching my daughter while being hooked upto all sorts of wires and tubes...pumping breast milk every 2 hours so that she would have it when she was unhooked from the tubes...all of this being several hours from home and even farther from our families...exciting times..let me tell you...

Anyhow...this opthamologist...an educated woman from a big city...took one look at our daughter and asked me if I drank or did drugs while I was pregnant...I was shocked and offended. I told her no and then shared with her that I taught parenting, child development and life skills to pregnant and parenting students and was fully aware of fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE). After tormenting my daughter with some metal clasps on her eyes and causing her to bleed, the opthamologist told me that my daughter would probably be blind (she didn't even bother using a more accepted term like seeing impaired). She also said that she would love to see my daughter again in a couple of weeks...at which point I said no thank you and shared that I thought she was unprofessional and disrespectful. I received an apology from her and the NICU doctor but it didn't change the facts. However...I

was able to learn a great deal from that experience.

There are still people who assume that Hannah has Downs Syndrome...and I know it is because they have no idea what BPES is and Downs is probably their only point of reference. In actuality...she looks nothing like a child with Downs or FAS. It still hurts when somebody makes a comment or assumption and thankfully Hannah is still unaware of those kinds of things. Unfortunately, there are alot of mean people in the world and there are also alot of people who just do not know any better. I do not mind sharing the details with friends and family members...because maybe they'll tell someone and they'll tell someone and pretty soon there will be more people educated about BPES than not (not such an unrealistic goal).

I also used to question myself...did I do something during my pregnancy to make this happen...or did I party too much in my early 20's during college...did that diet Dr. Pepper that I drank during week 20 do something...was the fish cooked enough that I ate at Christmas time. You can really tear yourself up. The way some people responded to Hannah use to make me doubt myself even more. But not anymore...because I know there is nothing I did to make this happen. Most importantly, my main focus is my daughter and our jobs as parents to Hannah is to lift her up...support and nuture her...so that she will be strong and confident enough to handle any bully or ugly person that may cross her path.

My husband and I were teaching on the Navajo reservation when our daughter was born...and I actually had a student tell me that Hannah was born that way because somebody gave me a gift for her before she was born. The Navajo people traditionally do not have a baby shower before the baby is born....which makes perfect sense to me...however...I do not believe that because we received a gift before she was born caused her to have BPES. It is more of a superstition than anything.

I am sorry that there are people who are suppose to love your child unconditionally who are not very nice. I say you are better off without them in your life. I personally want to be around people who accept me and in this case, my daughter, just the way we are. There is enough negative and ugly things in the world that are completely out of our control. The people we choose to spend time with IS in our control...and I choose to be around loving, positive and supportive people. And if that means cutting out a family member or two then by all means...bye bye now...have a good life...

Thanks for letting me share and thanks for sharing as well.

Debbie

tonikka <lyndenhunter@...> wrote:

hi Leah im just the person to ask about people not accepting my son for who he is. my sons grandmother (his dads mom) only just recently acknowledged that he was her grandchild, from the time he was born she blamed me for his "looks" says I must have drank or did drugs, funny thing is I never ever have touched the stuff. anyway from when Lynden was 5 months old till he was 2 she refused to see him, she said she could not handle having a "retarded" looking grandson (look at his pics, he looks far from retarded) anyway we decided that we would slowly reintroduce her back into my sons life, by this time we had a daughter too, well she ogled and oogled over hunter (my daughter) I told his dad he would have to start standing up for his son and for me ( she said many many nasty things) he refused said he could not turn his back on his "family" (obviously not me and his kids) so I gave him the ultimatum and he chose his "family"

unfortunately it took our divorce for her to really get to know my son but you know what I am glad it all worked out this way because both his dad and I are in new relationships " im getting married in august"(never thought I would do that again) and he sees his dad every single weekend. so in the end it worked out, but I tell yah I am sure glad to know that my ex mother in law is not the only ignorant woman out there. hopefully your sons grandmother will realize what she is missing out on. my only suggestion to you would be tell her where to go ( if you can ) but really try not to let it get to you, I know that is probably the last thing you can do, but honestly it does get better, EVENTUALLY.

Tonikka

-----Original Message-----From: leah [mailto:leahs_male@...]Sent: May 6, 2004 10:11 PMblepharophimosis Subject: Re: blepharophimosis Ethans photos

Ethans eye specialist here in Hastings, NZ is Dr Jane Houliston, She is brilliant. She put synthetic suspensions from his eyelid to just above the eyebrow.. At first the eyes were so open it was pretty scary but a few weeks after the surgery, the swelling and bruising had gone and they looked 'normal' if that is the right word. He also had to have drops in his eyes every day because he couldnt blink theye eys were not getting any moisture and they were drying out.. it was also coming into summer so the sun was probably affecting them too. She recommended some sunglasses but Ethan wouldnt weat them.. despite bribary and growls etc.. so we gave up and just used the drops. He has vision tests every 3 months and so far is doing well and has no need for glasses. Yippee!

He has low muscle tone which affects his balance and fine motor skills, he also cant be toilet trained because of this. He also has very bad hand eye co-ordination and tends to relate to adults better than kids. Ethans father does not support me in any way with his condition and we split up two years ago which makes it hard battling along on my own. His mother is also very unsupportive to the point of being nasty about Ethan and even excluding him from things she does with the rest of our family. I am slowing learning to put my foot down with them but its like battling a lost cause .. does anybody else have jugmental people like this that they have to put up with because they are family? I have tried explaining about the syndrome so she will understand but it seems to fall on deaf ears. Its just plain that she doesnt like him.any suggestions would be really welcome.

RE: blepharophimosis Ethans photos

my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly??

Tonikka

-----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah

June 11, 2005

Re: Re: Does anyone have advice on

> withdrawling from Paxil btdt100

>

> You know , I don't mind people referring where they found help

> in

> withdrawal but it does bother me that they are not honest and

> include the

> facts that the person they are recommending charges for their medical

> services while having NO licenses at all for what they do. Breaking

> the law

> and misleading people is not good for any of the parties involved.>>

----Ignorant by your definition means that one stand in awe of

your brilliance and superiority. Coming from you, it is a compliment.

>

> ** FYI, , there is no law against doing health education consults;

> however, before you speak, you should know that of which you speak. What

> I do and how I do it is 100% legal. You only show your ignorance when you

> make statements like this, but worse yet, you interfere in possibilities

> for people to get well.

---- Manipulate words how you wish, but what you do is not legal, nor

ethical and it is your own ignorance that deludes yourself and others that

you do something noble for the sake of nobility - you do it for money with

no licenses or education. It is practicing medicine without a license. You

also recommend nutrients based on your " medical " diagnoses (and sell them

for your living) which by law requires at the least, a naturopath license.

Those licenses are extremely easy to get and one can only wonder why you do

not have one.

----But my point was not so much about that but rather that your agents

should be honest about the purpose of your board when they lure people to it

which is not a public forum as most believe to be. It rather

instead is your office of business and is totally controlled by you. All

posts are screened by you. No negative reactions against your treatments or

advice are allowed to be posted, no one who disagrees with anything you say

is allowed to post, no one who does not respect your complete superior

authority and stands in awe of you is allowed to post. But then maybe it is

not about your " business " but rather your own issues with totalitarism?

> Just so you have it clear, it is only in cases where people want

> personal help above and beyond the scope of the group that I charge for my

> services. By and large, my group members are quite willing to pay for this

> enhanced service.

---- Of course your members are willing to pay, that is my point about the

purpose of your group. Again, honesty is due at the least.

>

> When you speak in a public forum be careful what you say.

---- Are you threatening me? Am I suppose to be scared of you? Or is it

you that is so easily threatened for some reason?

> I've banned you from my group seeing as how you don't see anything

> good in it. You're such a hypocrite, .

---- I'm hardly the first you have banned am I ? You banned me

because you do not tolerate anyone who does not stand in awe and support of

you. Sorry I threaten you but that fact was established a long time ago.

But I am still a member of other health groups that have banned you because

they are public forums and do not tolerate your using them to drum up

business (otherwise known as spam).

---- It is you that is the hypocrite , because you are member of

all these other boards not to share your own personal experiences but rather

for the purpose of soliciting business over to your own. That my dear is my

main contention against you.

>

June 11, 2005