Life without Noah
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Life without Noah
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Home | January 2004 | birth & bad news | Noah at home | Noah at home 2 | Goodbye | Beautifull memories | Noah`s music | Metabolic disorders & Zellweger-syndrome | Life without Noah | contact |
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Noah 28-01-2004 (english) |
The mention of my child`s name
May bring tears to my eyes
but it never fails to bring
music to my ears
If you really are my friend
let me hear the beautifull music of his name
it soothes my brooken heart
and sings to my soul
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The first months after Noah`s death we lived in a daze.It was like we
were lost in our own lives.
Everything changed,because we were changed so much in such a short time.
That felt weird,like the manual of yourself was completly re-written.
Our lives didn`t feel like our lives anymore.
And the things people sais to us...*uch*...
'ah,but you knew he`d die' , as if that would make it any easier.
'you must be relieved' .About what?
'Are you over it?' Waiting for that to happen would be the same as waiting for an
amputated leg to grow back on.It won`t.
Slowly we started to realize it wasn`t a bad dream,it did really happen.Our son died.
We felt terrible about the fact that we,as his parents,could not protect him against
this disease,we couldn`t save him,that there was just so little we could do for him.As a parent you want the best for your
childeren ; all we could do was make sure he would die peacefull.
The best for him,was the worst for us.
In time,it became clear which people were loyal to us and Noah* ; which
people supported us and gave us strenght,and which didn`t.
Also for Jessy is was hard to understand.He wanted us to get 'a new Noah* from
the hospital'.He was really angry with us because we couldn`t.
Another thing we experienced was we didnt even have half the energy like we did before.We
couldn`t concentrate and it was a struglle just to function in daily live.
After a few months there started to be some balance.
Patrick went back to work and we were supported by a social worker form his work
, Joost.
Joost supported us really well,He was very realistic and down-to-earth about matters
and we had some good and usefull conversations with him.We were lucky Joost was there for us.
In september we had a meeting with Noah`s* paediatrician and he told us they were
able do find the exact defect in the gene.
That was important because if we decided to get pregnant again,we wanted to be sure
we could protect the child from Zellweger.With the defect being known,it was possible to do pre-natal testing..
Besides we were missing Noah* intensly and the hurt that was there every
second,we felt more and more proud of Noah*,and gratefull for being able to say we were his parents.A huge love for that beautifull
child we took care of.
We believe Noah* came with a reason.He was here with a task,and the honour was ours
to support him doing that.He did something to people.You can compare it with a brick that`s thrown into the water.He made
a lot of people look at their own lives and think about it.
This was ment to be.Somewere out there is a higher power,who knew we`d do what
needed do be done,to support Noah* forfilling his task.
We are so gratefull that he was here,for the things he gave us and the things he
thought us.It was to short,but he came and he was here.We wouldn`t have wanted to miss any second of it.
It`s a hard fight to get our lives back together,and we are working very
hard to make it work again.It would be an insult for Noah* if we`d let hang our heads down.
He and his live are to precious to be overshadowed by despondentness.
And i feel the need to express our appreciation for the doctors,the nurses
& everybody who took care of Noah* or supported us taking care of him/
All the equiptment we needed at home,the medication,the approvals of the insurance,it
was all taken care of within 48 hours after we were told Noah* would die.
We could contact the baby-IC 24 hours a day to talk to a paediatrician.
Our family-doctor visited us 2 times a week and did a perfect job guiding us.He also
made sure the doctors who replaced him when he wasn`t there knew exactly what was going on.
The paediatricians and our familydoctor made sure Noah* could and would die at home
in peace ; in dignity.
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