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Subject:
From:
"katherine a. dettwyler" <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Fri, 3 May 1996 19:29:49 -0500
Content-Type:
text/plain
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>-Response to your sad baby.  This must be a shock and I look
>forward to replies on dealing with this.

Been there, done that, have some thoughts:
1.  CONGRATULATE THE PARENTS ON THE BIRTH OF THEIR CHILD!!!!  Encourage
everyone to be thrilled with the new child.
2.  Put the parent in contact with other parents of children with Down
Syndrome, some with children several months old, others with children
several years old, others with children in late childhood/early teens.
Encourage them to talk to other parents and to see how wonderful their
children with Down Syndrome are before they spend too much emotional energy
being depressed.
3.  Make sure they get accurate information from the doctors -- many doctors
learn little to nothing about Down syndrome in medical school (like another
subject near and dear to all of us on LactNet).  A good book is "Babies With
Down Syndrome" or if they're up for it, a book titled "Count Us In" by
Mitchell Levitz and Jason Kingsley -- two young men who have Down syndrome.
Yes, they wrote the book and it's a riot.
4.  Be sure the parents understand that almost all children with Down
syndrome grow up to be "mildly" mentally retarded, will learn to walk and
talk, read and write, play computer games, go to regular classes at school
(if the school district isn't too archaic), play baseball, etc.  99% they'll
just be whoever they were going to be anyway.  Stubborness, sly senses of
humor, joy in life, and extreme affection for everyone are typical add-ons.
5.  Be sure the parents understand the extra importance of breastfeeding for
children with Down syndrome -- because they often have impaired immune
systems, so need all the help they can get; because they often have speech
problems, especially articulation and being clear, so that the exercise and
face/jaw muscle development of breastfeeding is extra important; because
they need lots of stimulation to optimize their cognitive development.
6.  Be sure the parents understand that they must grieve the loss of the
child they were expecting/hoping for, but that THIS TOO SHALL PASS -- it
make take days, weeks, months, but they will get through it and have a
wonderful sweet adorable child.

If I may be indulged:

And God said "No"

I asked God to take my pride;
And God said "No";
He said it was not for him to take away.
But for me to give up.
I asked God to make my handicapped child whole;
And God said "No";
He said "His spirit is whole, his body is only temporary."
I asked God to grant me patience;
And God said "No";
He said "Patience is a by-product of tribulation,
It isn't granted....it is earned.
I asked God to give me happiness;
And God said "No";
He said he gives blessings.  Happiness is up to me.
I asked God to spare me pain.
And God said "No";
He said "Suffering draws you apart from the worldly cares
and brings you closer to me."
I asked God to make my spirit grow;
And God said "No";
He said I must grow my own,
but he will prune me to make me fruitful.
I asked God for all things that I might enjoy life;
And God said "No";
He said "I will give you life that you may enjoy all things."
I asked God to help me love others as much as he loves;
And God said, "Finally, you have the idea."

by Janie Martinez Velasquez

Kathy Dettwyler, mother to Miranda, Peter (who happens to have Down
syndrome, and whose birth was not "sad" and whose life is not a "tragedy")
and Alexander

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