Thursday, April 9, 2009

Diagnosed with Down syndrome

A friend of mine has a friend who just had their second child and that child was diagnosed with Down syndrome.My friend would like to know what she can say to her friend to be an encouragement.What would you have liked for people to say to you when your baby was born?


Megan said...


Laura said...

This was a good question, one I've been here thinking to answer. Looking back 10 1/2 years ago, what would I have liked to hear....NOTHING! Really I know that sounds bad. I didn't want encouraging words from those who didn't know the shoes I was in, and I didn't know anyone who was in my shoes. Now what do I say to people, that you may not realize it now but this baby will be the best blessing ever, congratulations! For now I have walked in their shoes :)

Evelyn Parham said...

I did all that typing and didn't tell you what I wished people would have said to me. (lol)

I can't really think of anything, because I got the congratulations and that she's so beautiful.

One person did say to me (online) that I have an angel and a direct connection/line to God. I will always remember that. :) It really touched my heart.

Well, that's it.

Take care!

Evelyn Parham said...

This is an excellent post. I posted a long post and some how did something wrong.

Here is what I said in a nut shell. I really did not want people saying anything to me, because my hurt/pain was so deep that I wasn't hearing what they were saying at the time.

The main thing that people can do is be supportive, loving and caring. Sometimes silence speaks a thousand words.

Over time, my hurt has healed and now I am filled with joy and peace knowing that my child is a blessing full of who she is and not her diagnosis.

I have a website that has really helped me and would like to share it.

The child is not his/her diagnosis, they are who they are, a person full of endless possibilities. (message to your friend) from Hannah's mom.


Heidi said...

I found out when I was pregnant with Joel. When Joel was born the comments that I appreciated the most were really simple. He is so cute. He is so beautiful. He looks like you.

I wish I would have focused more on who Joel was at the time. I spent so much time worrying about the future. Enjoy every moment and do not worry about the future. I wish someone who had a child with Down Syndrome would have said that to me. Even if I wasn't ready to hear it - it would have been good to have in the back of my mind!

The Sanchez Family said...

I ditto the simple things...Congrats, he/she is beautiful, he/she is a blessing, it's going to be ok/great, and then give the person the book Gifts. I couldn't STAND it when people said "I'm so sorry" or would gasp at the news and look at me with pity. I just wanted hopeful messages. Down syndrome is not a death sentence and so many people wanted to handle it that way.

Beverly said...

Congrats! He is so beautiful! What a blessing.

Cathy said...

I just wanted to hear "congratulations". Actually I just wanted to hear what any new mom would want to hear. A friend also went out and found the book "Gifts" for me. I really appreciated that too.

Mommy to those Special Ks said...


Monica Crumley said...

Great comments so far. Congratulations and give the book Gifts. Also, offer to have her friend contact you if and when she's ready. I know I didn't want to talk to anyone associated w/ Ds for many months. I didn't want to acknowledge that we were going down that path and I was scared, even though I accepted his diagnosis and loved him unconditionally. I was more sad for me and my desires (the Italy vs. Holland scenario). Also, let her friend know about so she can just sit back and read w/o having to engage until she's ready. Jennifer's right, it's not a death sentence and really is a blessing but it's hard to tell a new mom that and have her believe it if she's feeling distraught.

Mrs. Miller-THS LIbrarian said...

Those of us with babies born with DS are the lucky ones. Our family and community has learned and grown in ways that are unexpected and rewarding. Very few people are inappropriate. Many folks are caring and exploring feelings they have never had before and want to learn and embrace the chance to become less ignorant. I feel comfort talking to people that are on a similar journey. Everyone of us has the capacity to love our fellow citizens.

Lisa said...

The same thing I would have wanted to hear with any of our other babies: "Congratulations!" and "I'm available to babysit" :)

Crittle said...

I needed a "Congratulations!" and a meal. Seriously. We were so overwhelmed, we didn't eat.

And then, after a while, after everything died down a little, I would want them to call and see how I am. And be sincere about it.

I think that would have rocked.

Jeanette said...

I want to echo the above.... "Congratulation" and the comments like "she looks like you" or "She has such beautiful... (fill in the blank)"

I love it when people admire Sydney's big blue eyes, or her soft blond hair, or big smile.

Mrs. Miller-THS LIbrarian said...

This post is from the husband of Mrs. Miller Librarian.

I am writing this entry from the perspective of a new family learning the news their unborn daughter or son has DS, as this was our experience.

First, sit down.
Second, take a deep breath.
Third, there are no words written or spoken that fully express what you are about to hear.
Fourth, your child has DS. Although there are volumes of books and pamphlets discussing DS, there are none, that fully capture what you are about to feel and experience. As with many chapters in life, the fear of the unknown is working against you. Although you may have no experience with children or adults with DS, you are about to meet the most precious and sincere human you have ever met. You are about to understand and experience a new definition of a normal life. You are about to understand of how expansive and broad and loving and beautiful and deep your world and your families world can truly be.
Although you may not feel it now, please know this, you are truly blessed to have this child.

Jill said...

Congratulations! You've no idea how very lucky you are.