Archive for June, 2011

Holland and its offspring

June 28, 2011 in Emotions

Parents receiving a diagnosis are very often given a copy of Emily Perl Kingsley’s essay, “Welcome to Holland.”  Likely you will receive this essay one day (actually you will probably receive at least 20 copies).  Ms. Kingsley wrote this essay to reflect on life as the mother of a child with Down syndrome, living a life different than the one she expected, but full of its own beauty.  To many, it is an essay of comfort, reassuring parents that this unexpected detour has attractions and beauty you will come to appreciate.

Writers with children with special needs have created so many spin-offs to “Welcome to Holland.” Jen Graf Groneberg’s book Roadmap to Holland is a Down syndrome community favorite, but there are many essays, each providing a twist on the adjustment a parent makes in learning of a diagnosis.  Blogger Dana Nieder sent us a link to “Amsterdam International.”  We think it’s insightful, and especially relevant to those fresh to a diagnosis.  For our moms in post-diagnosis pregnancy, they can be stuck at Amsterdam International for 4 to 6 months.  They can look out the window, catching a glimpse of one of those beautiful windmills everyone is talking about.  But mostly they are just sitting, waiting, worried, reading tourist brochures and trying to figure out how to master Dutch before they get released into Holland.

Tell us what you think about these essays, and give us your favorite Holland spin-offs.

(Original Post Oct. 9, 2010)

All the single ladies

June 25, 2011 in Diagnosis, Emotions, Future, Support

If you were a single mom during your pregnancy or after your baby with Down syndrome was born, we would love to hear from you here on this blog post. Some of our moms are single moms when they find out their babies have Down syndrome. A few part ways with their partners after a diagnosis. While this may not happen often, those moms would really benefit from hearing from experienced single moms. Will you share your story here?

Happy Father’s Day!

June 19, 2011 in Dads

Today is Father’s Day, and Down Syndrome Pregnancy salutes all of the fathers waiting to meet their children with Down syndrome.

We have several resources geared toward fathers that we invite you to check out, including our post “What About the Dad’s?”

Also, enjoy the new D.A.D.S. Newsletter, released today by the Dad’s Appreciating Down Syndrome National Organization.  This organization can give you a glimpse at what life as the father of a child with Down syndrome is like!

Also, the Down Syndrome Guild of Greater Kansas City has many great articles geared to Dads. Check it out HERE. The Riverbend Down Syndrome Association also has a collection of articles for Father’s Day HERE.

We hope you have a relaxing and enjoyable day!

The essay that spoke to me when I was pregnant; Thank you Pam Wilson

June 17, 2011 in Emotions, Future, Support

This was 6 1/2 years ago. There was no GIFTS book, no Down Syndrome Pregnancy, Inc. I received a packet of information from one of the local groups. I read everything. I absorbed the information. I read the “stories” – some were OK, some seemed too sappy for my taste.

But one – one stood out. I read it, and read it again. It influenced me – it allowed me to envision my future self – a vision that even influenced how I wrote my story for the GIFTS book.

The author’s name held no significance for me, and did not stick in my memory. Eventually I filed it away with the list of questions for my doctor, the list of names my kids suggested for their unborn sister (“Taynoose, OK honey that’s a great suggestion for a name – I’ll put it on the list”).

I found it tonight. The author is Pamela Wilson, who is well-known in this community, a woman who works tirelessly to bring information to parents.

Thanks Pam, thanks for bringing me hope during a dark time!

Check it out HERE.

AP story on new prenatal testing; DSP mentioned

June 15, 2011 in Blog, Book, Medical Provider, News, Resources

This week AP reporter Malcolm Ritter wrote a thoughtful story on the upcoming non-invasive diagnostic prenatal testing and the related ethical concerns. Mr. Ritter quoted our own Nancy McCrea Iannone, and mentioned Down Syndrome Pregnancy as a resource for those planning to deliver a baby with Down syndrome. Ethical concerns of various experts, including Dr. Skotko, were explored, and for our expectant parents ready to learn more about these issues it is worth reading.

Particularly insightful was the reporter’s choice to open and close the story with the personal experience of Down Syndrome Pregnancy “graduate” Erin Witkowski. While the larger ethical concerns are important for us as a society, Erin’s story illustrates that, at heart, testing choices are very personal, and influence the “story” of each and every family. We respect the individuality of each family’s path and are proud to serve those families who have joined the Down syndrome community in the prenatal stage.

As we contemplate ethical issues, it is imperative that we applaud the efforts and successes of those involved in ensuring that every expectant couple receiving a diagnosis also receive up-to-date, unbiased, and medically approved information. We urge all stakeholders in prenatal testing to embrace the diagnosis booklets authored by Stephanie Meredith and distributed through Lettercase. A product of the historic “consensus group,” the Lettercase booklets received approval from representatives of the national Down syndrome groups and many major medical groups. These booklets are the gold standard for prenatal Down syndrome diagnosis, and anyone invested in informed decision-making should support these booklets.

Down Syndrome Pregnancy, Inc. provides that vital second stage of support, ensuring that those expectant couples choosing to welcome a child with Down syndrome have as much information and support as possible.

AP story HERE
Lettercase website HERE
Dr. Skotko’s website HERE
Community member reaction HERE

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