Mailbag

Dear Mrs. Sander:

This letter is long overdue. My little darling is already 16 months old and she is doing beautifully. Her cardiac surgery can be pushed off indefinitely and we are working on her motor skills.

I must say that your magazines (a few back copies) were definitely the best gift I got when she was born. My baby is the youngest of eleven children and the fourth girl. The diagnosis came as a complete shock – we didn’t notice anything the first six hours after she was born!

I hungrily devoured your articles and they really helped tremendously! It was also good to speak to other mothers and get practical advice like “a bath every day and only the cutest clothing!!”.

I am enclosing some recent professional photos – my husband is afraid “it’ll be hard for others to see how good she looks” – do as you think! (Ed. Note: Are our husbands related?)

I have two requests for your next magazine:

  1. My baby’s diagnosis is Mosaic Down syndrome; I don’t have access to the internet. Can you fill me in? What does it mean - “high functioning” – should I treat her differently? Is there a genetic factor to be concerned (I would love to have more children!)?
  2. Now that your magazine is ‘open for the public’ I would love to see more written on “how to react to a mother with a baby with Down syndrome”. I have found that a difficult one – dealing with people’s reaction or lack of. Would I have known what to say to a new mother (of course, ‘Mazel Tov’ is in place!)?  Why do I have to deal with the stares, uncomfortable silence….if I take my baby to the pool when I’m watching my other little ones?! I didn’t change! I find the burden always on me – to help make everyone comfortable!!

Thanking you in advance and looking forward impatiently to the next issue of DSAU –

F.C.

Editor’s Note: Mosaic Down Syndrome will be explored in the next issue of Down Syndrome Amongst Us.

By now you know my opinion about the other issues you address – we have met at your community’s support group and I’ve spoken my mind. However, I invite readers to share their tips and ideas with you.

This article first appeared in issue #16 of Down Syndrome Amongst Us


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Click here to see the other articles in issue #16 of Down Syndrome Amongst Us