One day after the shock and still knocked out by the blow. Every phonecall is accompanied by tears. And friends, because we know now that we have them, are crying along.
While in the hospital.... Arenka is more concerned about me then
about Summer. We dont feel a lot for her yet, even if it sounds horrible right
Arenka says" I don't feel joy and I don't feel grief"....and that says it all.
When we look at Summer , there's nothing but negative feelings and fear. She doesn't seem to react to anything? Is her handicap so severe that she doesn't react or hear anything. Our whole future is gone and we dont know what to do!
In the hospital they're very sweet, especially Lia and Annemarie, who make time to talk to us and really are concerned.
with Arenka, how will we ever love this girl?
When Merel sees her baby sister for the first time and is so happy, we break up and cry. We have so much trouble loving her and our litlle girl is so sweet to her, without any conditions or restrictions.
In Merel's eyes she's her sweet baby Summer and that's enough.
How proud can you be as a big sister
After another day of grieving and insecurity, there's a turn in
the evening. I decide to surf the net to learn something more. In my head is the
scary picture of adult Downies and I see my child becoming one. But thats
fiction. On the internet there's the dutch site of the Down's foundation SDS (Stichting Down's
Syndroom) and they are so positive that I decide to go for it. Stop the
We are gonna give Summer the best possible upbringing and try to make her a happy girl.
Sadly enough....Summer is not doing so well. Her bloodsugar is too low and she's transported to pediatrics. The whole day long they are poking needles in her.
The pediatrician assures us that the sleeping is normal for a newborn. How should we know? Merel was born with eyes wide open.
In the hospital they're astonished by the change in my attitude. For the first time we feel love for her and in the evening she opens up her eyes for the first time as if she wants to say:' welcome in my live'.
The drinking is getting worse, but we think thats because they switched to artificial feeding to fast.
Her skin is yellow and she appears to have a shortage of Bilirubins. That's why they put her in some kind of solar box to give her the right colour. It's strange to see her with her little glasses on, but she doesn't seem to mind.
The first week is over and the complaints are gone. I ask a lot
of queations and not everyone is to pleased about that. I openly question the way they treat
her. Why does she breathe so fast ("because all baby's do", they tell me).
They check her blood and everything is okay. An ecg is to be made but is cancelled because it's holiday time. I get really angry. Is this an hospital or a tourist hotel!
desperate attempts to get her to drink
Then the resident who's telling us the outcome of the test. "Just a case of bad luck," I say. She doesn't agree. It isn't bad luck to get a child with Down Syndrome is her opninion...... Like she has had a baby like this.
The meeting with the pediatrician is the highlight of the day.
He keeps calling our girl a "mongol", something I understand from people who
know any better, but not from someone who should have some common sense and
He give us the advise to give Summer nice clothes, "thats important with these kids". I clamp up and don't know what to say. Completely disillusioned, we leave him. And we aren't allowed to take her home because of the feeding difficulties.
Back on the ward I collapse. Arenka is very angry and goes
back to find the 'ped.' but he's gone. She demands a new meeting with him
tomorrow. I can't; I am so very tired.
That evening I call several people to ask if our reaction is the right one. Every single one tells us that children with a feeding tube go home. This makes us stronger.
Copyright © 2001 Rob Breedeveld