Sunday, February 28, 2010

Angel bag Lady and kaleidoscope

Excerpt out of my diary May 30 2008 7 weeks and 4 days It feels like a feather.......a feather tickling the soles of my feet.
That is how it feels , having you inside me.
So relaxed . All the time. Except 2 nights ago of course.
The night after we found out you were a miracle.
Still in there.
After that big bleeding we were in twilight zone.
Not daring to hope . Thinking of all the reasons it would be better not to be pregnant after all...
Us ; two musicians.....your father and I. Rich with each other, our Eden/Paradise , but not according to our immediate world.
How will we be able to take care of you ?

That night was full of anguish for me. Then I prayed to patiently wait upon God... and see !?.....I feel peaceful and calm again.

I asked my mother and sister about being pregnant , but they have forgotten a lot of details,so.....here it is ! :0)
You will be able to read this when you are grown up. And know that your mother is a just a human being , just like you ! Thirty eight years "old" , but I still feel like I am twenty .
This New Year ( I mean last New Years day ) started with a meteorite.
I saw it driving back from Laidily . Flashing through the sky. It had a beautiful long white tail.
It is recorded on the Internet with my name beside. Maybe you can still track it down! ? It felt like a sign.
I didn't know what for , but I knew this year was going to be special.
And now you came into being . I waited so long !:0)

Once I met a bag lady , she held my hand a touch longer then normal. It was after a concert at the "Shrine of the Immaculate Conception" in Washington DC.
The day before I got lost in South East ( after the rehearsal )
I was nervous , since I had to find the way back again.
She had very light blue eyes -she didn't look unkept at all-had snow white hair and had exactly my accent. ( Dutch )
Her name was Doris. I asked her if she was sure she wasn't Dutch after all...?!?!
"No", she said with a smile. We just talked normally. Nothing out of the extra ordinary ; she too had studied at Indiana University and told me it would be good to teach harp to young children. After she had held my hand a little longer then normal while saying it was such an honor to meet me, a peace settled down on me.
A peace so serene and profound , it didn't leave me for three days .
After I had loaded the harp and I turned to say goodbye to her , she had completely vanished.
She was nowhere to be seen ......
If you know the Shrine , you will know you just can't vanish in this wide and open space surrounding the front with the steps !
The peace stayed . A car came with people who were willing to drive in front of me to show me the way home. Home to Will . He noticed something had happened.
I didn't wash my hands for three days ....
After three days the calm feeling lifted and I have never felt it since.
But the memory warms my heart. Later I found out that "Doris" means Gift.

WHY THIS STORY ? You must think .
Do you believe in angels ?
I will continue telling the story , because it didn't end there .
The first ultra sound after the "miscarriage" , was done by a very sweet compassionate lady. She was so positive !?
Telling us more or less she wasn't sure it was definitely over.
She showed- and now don't laugh :0)- the sac and yolk....YOU . She told us it was too early to know if it was a blighted ovum or not.
Very happily she said; "Hopefully I will see you in three weeks or so"
When I asked her what her name was , she answered " Doris" The same name as the "Angel bag lady"
At that time I knew ,but hardly dared to hope. Still I questioned. I saw the possibility...God telling me about his gift ; YOU !

Feb. 28 2010

And look at us now . How little did we know ...!
Looking back it seems we were being prepared. Prepared for all that was-and maybe still is- to come.
Living right now feels like being in a kaleidoscope , or at least looking through one. That's good ! Looking through one you can start seeing the beauty of the chaos inside .

Friday, February 26, 2010

The one thing I have to say today is THIS ! :0)
I think Eliana's prayer is starting to work !
I got an e-mail from a mother whose 6 month old son has the same thing Eliana has .....
The doctors at the hospital she was going to (in MD ), didn't know what to do anymore . Now she is sending all her son's data to Surgeon Hanley in CA !
I am so excited !
Every night I check the chd message boards for cries of help . This is how I got in contact with her .
I haven't heard from donoharmdoc , nor Doc Mee . That doesn't matter . I will keep plugging on !

This is part of a mass e-mail I wrote before starting this blog

Today I decided I will start a blog . ( after seeing Julia and Julie -very nice movie ) I want to save as many babies possible. I know my voice is small. That's why I already spoke to the secretary of Doc Bagnato from the PBS Documentary "donoharmdoc " http://www.donoharmdoc.com/
She was very interested .We talked for over 20 minutes.....We'll see if he will call back... Think of this. There are over 1200 babies like Eliana born in the USA . Our insurance company lost already roughly 2 million dollars in botched surgeries and unnecessary procedures which almost killed Eliana...I know most hospitals and insurance companies are not lovey dovey , but 1200 times 2 million........... might make the insurance companies want to take some form of action.. And this is only ONE form of chd.
If we make a page with all expert doctors .....and affiliate this with the movement of "donoharmdoc".........Lives CAN be saved ! If "donoharmdoc" can contact insurance companies.....They might listen.
I am no doctor , nor an accountant . My English isn't perfect . My voice small ...who knows...maybe Doc Bagnato is willing to make it a little bigger.
I also contacted the Cleveland Clinic where Doc Mee used to perform surgeries. The book " Walk on Water: Inside an Elite Pediatric Surgical Unit" was written about him They will forward my e-mail address to him.....He was just as frustrated. He pioneered the life saving surgery for babies born with Disposition of the Great Arteries....A hospital 10 minutes across the state line never send "their" babies to him....with disastrous aftermath.

I will keep on trying to save lives , I have my whole life . Even if Doc Bagnato or Doc Mee won't get back to me , I will keep trying to speak up for all these babies and their parents.

Wednesday, February 24, 2010

Saving babies like Eliana

How do I start this journey I am about to make ?
After all that has happened last year ? So much happened that nobody would believe it.
It all started with a prayer. "God ,can you please tell me the name of this baby I am carrying inside ?" My husband and I were expecting our first baby after a painful miscarriage . We had chosen a name for the angel we lost , but couldn't agree on this one.....
Well ; we got an answer and quick ! E-L-I-A-N-A
That's how it was spelled out for me , complete with the dashes.
I am Dutch , so I didn't even know if this actually WAS a name , nor the meaning of it......
When I did some research on the Internet I just about fell of my chair .
It WAS an existing name and it's meaning is;
Eli = my God and Ana = has answered me.
My God has answered me !
And answering my prayers ( and countless prayers of others ) he DID !

In her 13 months of life He helped Eliana survive a catastrophic stroke during a cath procedure and an open heart surgery gone wrong ( she was put on ECMO )
After all of this He led us to the right surgeon , Frank Hanley and a way to get to him half across the country.
We just came back and Eliana is crawling through the house like there is no tomorrow ! :0)

My prayer right now is that He will use this blog to help save babies like Eliana.
If Eliana had been send to the right surgeon from the beginning non of these near fatal scenario's would have happened .......but then I wouldn't be alive. That's a whole other story I will tell you about another time.
You never know why things happen when they happen . Sometimes when you look back you will begin to see , understand.
There are so many things to say and explain. I hardly know where to start.
If you follow this blog , everything will become clear .