Author Topic: 2002 started okay...but now it is FUBAR (Read 1784 times)

Kieran · « **Reply #15 on:** January 10, 2002, 05:00:00 PM »

I have a brother that was a PK child. Never mind what the acronym stands for, it amounts to his being unable to process certain proteins. He was born in a time when tests for PK were rare, and by the time his was caught it was too late. He suffered mental retardation as a result.

Mom might have aborted him had she known. Here's the odd thing though; since Dad died, the two of them live together in the house. Without him there I don't know what Mom would do. He is mentally 9-10 years-old, and is the sweetest soul I know. He is what would appear to be a hardship to some, but I see him as a blessing.

midnight Target · « **Reply #16 on:** January 10, 2002, 05:42:00 PM »

I spent a little over 5 years as a Special Education teacher back in the late 70's early 80's. Kieran is absolutely right. I never, ever met a developementally disabled (that means disabled in any way prior to reaching maturity in PC) person that didn't have a value and their own gifts to add to humanity. I never had a day of work without a good laugh. A persons value cannot be measured by IQ, or physical ability.

I hope all turns out well for you Curval, just remember that sometimes what you think is a curse is actually a blessing.

Thrawn · « **Reply #17 on:** January 10, 2002, 05:53:00 PM »

Hey Curval, my wife is about 13 weeks pregnant also. My thoughts and hopes are with you.

Curval · « **Reply #18 on:** January 10, 2002, 06:56:00 PM »

My wife and I thank all of you for your thoughts and support...the timing of this was such that practically all of my friends are overseas and even my parents are off-island right now. I had no-one to talk this out with except the wife and her parents (who are visting at the moment)...so it was kind of tough. When I told my wife that I posted this thread I was a bit concerned that she would be upset, but she was great about it...she said at least I could chat to someone...turns out I get a bunch of "someones"...

As far as what I mentioned about aborting the pregnacy...it really isn't an issue of choice. The baby "appears" to have only one ventracle (sp?) to its brain. In most cases the babies that have this condition do not go full term and even if it did the chances of any kind of life (other than in a vegetative state) are extremely remote.

The only real hope is that the technicians and the doctor who reviewed the ultra sound are wrong...to be fair the ultra sound pictures are not clear at all (in general) and the fact is that they could easily be misread. But, we have prepared ourselves for the worst...they took an awful lot of pictures and two qualified people see the problem. All we can do is hope and pray.

[ 01-10-2002: Message edited by: Curval ]

eskimo2 · « **Reply #19 on:** January 10, 2002, 08:02:00 PM »

Its got to remind you how much you appreciate your family all that much more, reading this thread has certainly reminded me how much I love and appreciate mine.

Hang in there, its got to get better.

eskimo

texace · « **Reply #20 on:** January 10, 2002, 09:12:00 PM »

I was a preme...and I tell ya it was hard on my parents to not see me for 14 days since I was in ICU...hang in there bud...my prayers are with you...

miko2d · « **Reply #21 on:** January 10, 2002, 09:49:00 PM »

The most important thing is that you both can conceive and give birth to healthy children and have already been blessed with two.

Luckily we live in time and place where infant deaths are extreme exception rather then rule and danger to woman's life is not even considered.
Just recently the opposite was the norm. Our ancestors dealt with that - often more then once, so it can be borne.

In trying to conceive our child I learned much more about conception and fetal problems then I ever wanted to know. We really did not consider that we were having a baby until we got the good results of amnio back on the 17th week - we did not refer to it as child, did not consider naming and did not tell anyone other then two people who could understand us.
My thoughts were that whatever happened that time was not as important as the fact that my wife an I could conceive a baby - we knew that we could always repeat if we failed, as long as we did not allow a single failure ruin the rest of our lives.

Check what the doctors are doing but do not delay or try to deceive yourselves - clear cut decision and closure will be much easier on your wife. The waiting is the worst and the doctors know what they are doing. There are things that are beyong our control and the best you can do is make sure your wife is not blaming herself in any way or falls into a bad depression. You children and plans for future will be great comfort to her.

Speaking of the topic header it not nearly true - your year might have started with sorrow but it will be full of love and happiness no matter what, so it's not really FUBAR by a long shot.

Wishing you and you family well.

miko

Curval · « **Reply #22 on:** January 12, 2002, 09:41:29 AM »

The insurance company did not get back to me with
appointment details on Friday, so I will probably hear
when and where on Monday.

This really has thrown us "for a loop", but we are
gradually coming to terms with it and are prepared for
whatever happens in the US. My wife has been "like a
rock" once the initial emotion passed...although I
have made every effort to not upset her or stress her
out in any way. Her mother and step-father are here
right now by chance so we have been lucky to get alot
of help at home with the two boys etc.

We just never thought something like this would
happen. We had two healthy and smart kids...we just
figured this was gonna be the same. Our biggest
concern was that we really wanted a girl...but would
not really care if we had another boy.

I guess life throws us all a curve-ball at various
times in our lives and it is our turn now.

We will get through this and we now actually have a
new appreciation for the two healthy children we
have...they have been Lana's lifeline in all of this.

Anyway, when I know more I will let you know what is
happening.

NHMadmax · « **Reply #23 on:** January 13, 2002, 01:41:18 AM »

My wife had a misscarage not long back. We was waiting over a week to find out weather or not she had lost it. We are Both ok now but hit us for six when it happen.

Hope all goes well for you and your wife i will be thing about the 4 of you.

all the best

Swoop · « **Reply #24 on:** January 13, 2002, 12:24:06 PM »

GL Curval, here's hoping those doctors are quacks and have got it all wrong.

1776 · « **Reply #25 on:** January 14, 2002, 08:15:07 AM »

Am praying and thinking about you and your family. Be strong as your strength is important.

Curval · « **Reply #26 on:** January 14, 2002, 09:32:31 AM »

Still no word from the insurance company...I'm starting to get very annoyed with them. While it may be difficult to get an appointment quickly I have been unable to reach anyone there who can give me an update on their efforts. The contact I have seems to ignore her phone...she got back to me once late on Friday after four messages that I left only to tell me that she hasn't heard from the people in Boston.

So..here I sit waiting for the phone to ring...AGAIN.

I had to put off a trip to our office in the Carribean that I was supposed to go on Sunday.....I need to get there to review the systems and financial procedures performed by a staff member who is leaving the island for good on Feb 1. If I don't get there I may wind up not understanding how certain things were done and/or recorded....a situation that is bound to cause problems in the future. Obviously this is less of a priority than my wife and the current situation...but it is still important and I cannot plan anything until I have my travel details to Boston ironed out.

Frustration builds.......

As soon as I hear what is going on I will book two extra tickets for the trip mentioned above. I am going to bring the wife and my eldest son with me (the youngest will stay with his grandmother) and the three of us are gonna have a break after all the work is done, no matter how things turn out.

midnight Target · « **Reply #27 on:** January 14, 2002, 09:38:34 AM »

Curval,

Not sure if this is relevant, but I live near a Hospital called Loma Linda University. They have always been in the forefront in infant care including heart transplants and even prenatal surgury. It may be worth a try to give them a call.

Loma Linda University, Loma Linda CA. USA

Curval · « **Reply #28 on:** January 14, 2002, 09:51:58 AM »

Thanks for the thought midnight (and 1776, Swoop and everyone else...)

As this is an insurance issue now I am at their mercy.....

They say Boston...it's Boston.

I may look into that place in California if we are not satisfied with what is said there...

Curval · « **Reply #29 on:** January 15, 2002, 09:57:55 AM »

Finally heard from the insurance company - they were actually working quite hard on our situation and we have since found out that everything is covered 100%...even my airline ticket.

We leave for Boston on Thursday.

Anyone know where there is a good hotel near 750 Washington Street in Boston?