Tuesday, May 10, 2011

8 things to do if your baby is diagnosed with Down syndrome


1) Get connected. Join the Down syndrome community on Babycenter.com and meet hundreds of other moms who are blessed to be sharing this journey with you. Ask questions, read other mom's advice, brag, vent, rejoice, connect. This week Missy, the board owner will be guest blogging here...don't miss it!!


I cannot say enough about this amazing resource for new moms. I so wish I had this when I was pregnant with Lily- it would have completely helped alleviate so many fears and concerns.


3) Read other blogs. I'm compiling a list to add to my "pages" tabs above, but there is an extensive list here that is wonderful. Blogs are what gave me a "real life" view of what our future held for Lily. More than any book or packet of information, they helped me process what a diagnosis of Down syndrome would mean.


4) Go to Reece's Rainbow. Learn more about the abandonment of children with Down syndrome in countries abroad, their living and dying conditions in orphanages and mental institutions, and donate for a waiting child’s adoption grant. The things our children face here in the US pale in comparison to what children in other nations are facing- gaining a new perspective on what "suffering" was really was the turning point for me personally as a mom. Involving myself in advocating and fundraising for kids on RR made me realize how blessed we are to be given the gift of Down syndrome.


and speaking of that....

4) Read about our Three Little Angels Giveaway !!

So far almost $1,800 has been raised, which means almost $3,600 goes to little Albina, due to the generous donors who are matching her grant fund donations dollar for dollar. If she gets $5,000, her grant fund will be $10,000...so let's do this thing!


and speaking of that...

5)Check out our new prize!


One of Lily's readers (thank you again, Katrina!) contacted her friend Misty from beaditonline and asked her if she could help us out with our giveaway. Misty is donating one of her fabulous interchangeable watch bands & a watch face, valued at $25 to benefit our three little angels! If you already left comments on that post, you are automatically entered to win.

If you haven't had a chance to do so, please go to that post and leave a comment saying you will pray for these adorable kids, or blog or donate (leave a comment for each) and you will be entered to win. The other awesome prizes include a custom fingerprint necklace, a beautiful custom blanket, and a Scentsy warmer and bar...I wish I could enter my own giveaway!!


I'm proud to be a member of this organization, and I love their mission statement:

IDSC for Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. IDSC for Life will accomplish this mission by educating medical staff and families with a prenatal diagnosis, as well as offering current and up to date information.

I'm excited to be featuring founder Diane Grover in an interview here next week....if you would like information on IDSC please contact her at IDSCforLife@gmail.com.


This is the biggest lesson I've learned this past year. My daughter is capable of far more than I imagined, and I'm not going to settle for old stereotypes of what her diagnosis means.

Who says babies with Down syndrome aren't smart??

7) Read this Mother's Day Message. Over 50 mamas contributed and I guarantee you'll love it. Grab a box of tissues before you go:)


And finally...

8) REJOICE! You are about to embark on one of the most amazing, rewarding, and fulfilling journeys this life has to offer. I say that without hesitation. We've only been on this journey a year, and already Lily has taught us so much about enjoying and celebrating life to the fullest. Each milestone is treasured and valued, and I find myself being truly amazed at what that extra chromosome means. I've made literally hundreds of new friends since Lily's birth, and I am forever grateful for my eyes being opened to other children who share her designer genes. Besides the gift of salvation, Lily is the greatest gift I've been given in life.

Happy Tuesday!!


Jill said...

I love this! I think it's totally awesome and much needed. You are a true inspiration to so many. THANK YOU for publishing this, and for all of the helpful and meaningful links you have provided.

Melissa said...

Yes!! Babycenter was and is an amazing resource. But more than anything, I think blogs helped me realize that Ds is not the end of the world.

one_plustwins said...


Ginger said...

You said: What happens to children w/ Ds in the US pales in comparison to what happens to them in other countries. I don't understand how neglect and institutionalism are worse than being ripped apart, sucked into a vacuum, and thrown away. If life begins at conception, why is one abuse worse than another?

Patti said...

I'm sorry Ginger; I was referring to what happens after birth...While our kids might face rejection or ridicule, they do not face abuse and institutionalism. I agree that abortion is atrocious, that's why I am involved in and promoting IDSC for life in this post.

Annie said...

wonderful post with great information!! Blogs were my best resource by far!! I have to agree that Ollie is one of my greatest gifts :)

My Little Wonders said...

Fantastic post! And thanks for the link to IDSC for Life. I had not heard of them and really like their purpose.

Chris6h said...

Great post Patti and I would also add sign up for Google Reader so you can read all tthhe greatt blogs that are out there.

Violette's Mom said...

SMOOCH! Thank you Patti!

Education: Exploring Online Learning said...

Oh this makes me smile!

JC said...

Excellent post! I wish at the hospital I would have been given something like THIS instead of the information package they had there! Blogs saved me. They showed me that everything was going to be ok...That life would not only go on, but it would be GREAT! Not to mention I made a lot of very good friends :)

Ellie said...

I love that wording.."designer genes". I sure do love me some designer jeans, and sure can't wait to have some "designer genes" in my house within a year! We are just beginning our fundraising for our adoption, and I am terrified! Would you please pray for us, that we can get Carmen home?
Thank you, and thank you for your inspiring words.

Anonymous said...

Benji just turned one, but I SO wish that I had this blog post when he was born. What a blessing that you have put this together for us!! It is so odd Patti- I was just thinking about this the other day- what I would want to know now if I was just having a baby with down syndrome. And this is exactly what I would want to know. You have stated it all perfectly. And why your blog is such a blessing for SO many! Thank you for all that you do!!

I just cannot get enough of these beautiful pictures of Lily. And she is SO sweet in those videos. And I LOVE the picture of you and Lily. Much love, Cara

stephen kopp said...

My tears are running down my cheeks and dropping onto my desk, my heart is swelling up my chest with pride.

Lily Anne, Grammi is so proud of you and your siblings. I can see they must work with you everyday. You are one smart Ds babygirl. I told Mama right from the beginning "special babies go to special families" and God is proving me right. He certainly knew what He was doing forming you in your Mama's womb. Together you and God are bringing out the best in your family and friends.

I agree with Ginger, abortion is horrific but so is putting these beautiful gifts from God into institutions. I pray for the parents, for the caregivers, for the doctors and nurses who have been misguided. I pray for more people to advocate for Ds children all over the world.

kenda Hooker said...

Is there a way to post your awesome mother's day post onto my Facebook? It was great and I would love to share it!!

Patti said...

Kendra- you can post the link on FB, and it will direct people here. (No way to publish the whole post that I know of) Thank you for wanting to share it, it is my favorite post!

here's the link, just copy and paste


cathy said...

Beautifu to moms without a dx of Ds!


Unknown said...

What a beautiful, beautiful post. I love your heart. I love your baby : ) She is a joy.

Mrs. K said...

Don't know why my last post came up under Dad's name...maybe because I was on his PC. Anyway, just had to return, as I often do to previous blogs, to scroll through those precious pictures of my BEAUTIFUL daughter and granddaughter.