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Jessy was with Noah very often,to give him a kiss.
"so sweet" is what he said about Noah.
When he talked to Noah,he called him "moppie" (= something like "sweety")
Jessy made with Patrick a big snowman.
My aunt & cousin gave Noah a beautifull music-box,a blue/white Mickey-Mouse.It
has a very calm and classic tune ; we`d never heard something like that in a music-box.When we listen to it now,it feels like
Noah is still here.
When Noah was able to keep himself warm and he didn`t have to many seizures,we
took him outside.We took him to the market and to Jessy`s school.We`ve been able to do that a few times.
Almost every day i made an e-mail up-date for everybody ,called
" the Noah-yournal",with Noah on my lap.It saved so much time on the phone and a lot of people saved it.
A few weeks after Noah died,our friends came to us,and they had let a printer make
"The Noah-yournal" in bookform.There are only two of those ; one for us and one for Jessy.
What a loving gift!
Noah had a cap on his head most of the time,because it was so hard for
him to stay warm.When our friends moved to Italy last august,they took one with them.It has a special place , in the loving
memory of Noah.
Noah needed medication every 2 hours , so also at night the care was
intensively.His bed was next to hours,but very often we took him with us so he spent the night on our belly.
Noah could snore like no other!
We didn`t have to watch if he was a sleep ; we could hear it.
Especially when he fell a sleep on our lap and started his "concert" ,such a comforting
sound............
Noah`s nickname was "Knorredikje".
The first thing Jessy said when he got out of bed every morning
was "Hug Noah".
He started his day with hugging Noah,and giving him kisses.
We never "watched" so much TV as we did with Noah.
In the evening,on the couch , Noah on our belly and doze......
Noah loved music.
Andrea Bocelli , Vivaldi ; you could tell by the look on his face that he really
enjoyed that.And it was even better if we carried him around the room,rocking him in our arms while listening to the music.He
was al relaxed then.
As soon as he got used to it ; Noah loved his bath.
Noah took a bath with me once.
A memory i cherish.
It has been doubtfull , but Noah made it to Jessy`s birthday.
We were able to give Jessy a birthday like a 3-year old should have it.
Sitting outside in the sun .
Noah enjoyed it so much he had to sigh.
Our family doctor came twice a week.
He understood very well what our intentions were.
He gave us good advice and support.
We were very blessed with him ; we were able to give Noah a very calm life.
Every thursday morning , a childerens-nurse , Mientje,came to weigh Noah.
Noah gained weight very well ; 200 / 300 grams a week,on mothermilk.
Again we were lucky : Mientje was very kind , very sweet to Noah,always made time
for Jessy and always left a good feeling behind , because so many times we wondered if we did it all the right way.
While searching on The Net , we found the web-page of Justin Comeau ,
from Canada.
Justin also has Zellweger,(another sub-form than Noah did),and inspite the bad prognoses
after being diagnosed,he`s almost eight years old now.
Through MSN we talk with his parents and we see Justin trough the webcam.
Our friend Erwin who`s been building somanythings somanytimes with duplo/lego,with
Jessy.
Our dear friends Cas & Erwin told us they were honored to be involved
in Noah`s life so closely.
Noah ment a lot to them,and still does.
They do him justice,by remembering him with so much love and understand so well what
Noah brought to us.
To share our love for Noah , our memories and the grief of missing him with people
like that is a true blessing.
The painting for Noah,where also the urn stands , is made by Maurice,a
friend & colleague of Patrick.
It was supposed to give "death" a friendly face for Jessy so it was easier for him
to picture Noah on that beautifull cloud.Maurice did a wonderfull job and we are very happy with the painting.It shines into
the livingroom and is our sanctuary.
(Picture of the painting at " Goodbye")
As a response we recieved an e-mail from Pierfrancesco & Romina Chili.It
was so warm and sincere , and he said the next good result would be dedicated to Noah.That ment a lot to us.
We have almost an hour of film and over 200 pictures of Noah.
Cas & erwin also made a lot of pictures of Noah , and gave us prints from al
of them.
Pascal,Patrick`s brother,suprised us after Noah died,with pictures he made
of Noah in the hospital when he was 3 days old.
Every tangible memory , they mean so much......
We recieved so may cards,e-mails & messages to support us and to
let us know Noah will not be forgotten....
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