It was about this time last year that we shared Molly’s story of Down syndrome with our friends, extended family and the world (thanks to the internet)! I’ll never forget the emotion I felt when I hit “publish” on the blog post explaining our family’s new path. There was fear, sadness and even a little excitement. I wanted everyone to know how proud I was of my little Molly. The support we received (and are still receiving) from people we knew was amazing – and more so, the support we’ve seen from total strangers has been unbelievable.
October is Down Syndrome Awareness Month and throughout the next thirty days, I hope to share information about Down syndrome with you. Check out the following information from the National Down Syndrome Society –
- Down syndrome is the most common genetic condition. One in every 691 babies is born with Down syndrome. The most common form of Down syndrome is called Trisomy 21 , because it involves an extra copy of the 21st chromosome.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
- Up to 50% of individuals with Down syndrome are born with congenital heart conditions. The majority of heart conditions in children with Down syndrome can now be surgically corrected with resulting long-term health improvements. (Editor note: Molly was in the minority and has no heart conditions.)
- A 35-year-old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to one in 100 by age 40. At age 45 the incidence becomes approximately one in 30. (Editor note: I had a one in 850 chance.)
This past year has been quite a journey for us – a roller coaster of highs and lows…..but I wouldn’t trade it for anything. The world of Down syndrome is scary at times, but it’s also one of great joy. In just a short fifteen months, Molly is feeding herself, getting some great practice walking with assistance and just being a typical, fun little girl….that has an extra chromosome!
What things would you like to know about Down syndrome? I’m certainly not a medical expert – but I’m a mom…..and that makes me an expert on every day life with Down syndrome!
Comments
Cassie W
I think it is awesome that you have shared with us about Molly. I was working on a special ed degree before getting married so Molly has a special place in my heart. One day I want to finish it and work with these amazing and loving children.
Carrie with Children
Thanks, Cassie! I hope you have the chance to get your special education degree – I know you’d be great teacher! <3
Camille
She is too adorable. Thanks for sharing your story and this info, I think it will help a lot of people. =)
Carrie with Children
Thank you for reading, Camille! We are so proud of our little Molly! She rocks!
nikki
Love the blog..So today as Im going along to change my facebook profile picture to the Down Syndrome awareness ribbon I had a hard time finding one. “Sharing” the month with Breast Cancer, DS tends to get looked over. While I feel neither is more “important” then the other, do you know of any statistics regarding the two?? How many breast cancer vs. down syndrome diagnosis’ are made each year. =) Get ya thinking?? =)
Carrie with Children
Hi Nikki – That’s an interesting point. I’ve never seen any statistics comparing the two! Will keep you posted if I run across anything! You’ve certainly got me thinking! Thanks for reading
Nikki
I did a little research. New breast cancer diagnosis for the year 2011 are estimated to be 230,480 and down syndrome 6,000. US only and of course this does not include the amount of DS angels that aren’t given a chance to live.
Carrie with Children
Interesting! Thanks for the update!
Erin
I am so excited to find your blog and now be a follower. I have two little girls, my youngest who is now one with DS, Eslea. In my search for other blog hops, I came across your site. I am wanting to do a one day Hoppin’ for 21 on October 21st. The idea is to do a hoppin’ extravagance for those who support the DS community. There are so many who are not participating in the 31 for 21 campaign but still want to be a part of a hop/campaign of sorts. I hope you can be involved too. I’m working on the details now.
Your family is beautiful. Molly is a doll baby! Having a child with special needs is such a blessing. She has led me help form our local DSA. Beautiful! -erin
Carrie with Children
Hi Erin – Thanks so much for your nice note! I’m always excited to “meet” other moms from the DS community! Keep me posted on your blog hop, I’d love to participate! I’m running over to read your site now…and to learn all about your precious Eslea.
Ana
Love your blog! I myself a mother to a beautiful baby girls with DS an understand the journey you went through the first year. The only difference was that my Liliana had a heart defect. She had heart surgery at 9 months old, but is doing wonderful. She’s my little miracle.
Carrie with Children
Hi Ana – Thanks so much for reading! It’s always so great to “meet” other moms who know what it feels like to go through this journey! I’m so glad to hear that your little Liliana is doing great after her surgery. I know you must be so proud of her
Joeta
I am a school administrator who was blessed with a downs daughter 15 years ago. She is not my birth child, but the child of my heart who found me when she enrolled in my school at age 7. She lived in a group home and I feel that she was meant to be in the lives of myself and my sons. She teaches us how to be better people everyday. Your journey will be remarkable!
Carrie with Children
Hi Joeta – Thanks so much for your nice note. I love your story – you are a true blessing. The world of Down syndrome is such a loving place!
Kimberly
My youngest son, Michael, has Down Syndrome. He is 8 years old and the greatest unexpected blessing I have ever recieved. I became a nurse after he was born *Michael has had two stomach surgeries, eye surgery, a heart procedure and open heart surgery*. I work OB and one of the things that I find most rewarding about my job is getting to talk to women who have just given birth to a child with Down Syndrome. So much out there is aimed at warning you what is ahead, the possible medical conditions, the trials and tribulations and so on. I like being able to show them the other side of DS. The love and joy of your child, celebrating the little accomplishments….Good luck and your daughter is adorable 🙂
Carrie with Children
Thank you so much for your kind words, Kimberly. I am sure new moms must be so happy to have you to talk to after the birth of their child. What a true blessing you are to those mothers. I love showing others the positive and amazing side of DS too! I know you must be so proud of your Michael. I appreciate you reading my site!