Thursday, March 21, 2013

Happy World Down Syndrome Day Everyone....

Alright, I admit, this time last year, I had no idea March 21st was World Down Syndrome Day.  Little did I know what was going on in my belly!

Well this year is different, this year I am proud to say I am a mom of a son who happens to have Down syndrome.  In honor of this day and my son, I've enlisted the help of some of my Down syndrome mommy friends.

I know some of you may be thinking, here she goes again. Enough about the awareness, but here's the deal.... adults and kids with Down syndrome aren't treated with the same respect as the rest of us. It's the truth.  In the seconds that my son was born, I knew a bunch of negative stereotypes we smacked on him. That's not fair, that's not right. As his mother, it breaks my heart.

Every day we will continue to fight for our children, but today especially, is a special day for our kids. So let us have our soapbox moment. You would be doing the same thing if you were in our shoes.

Down syndrome is when a person is born with an extra copy of their 21st chromosome, so they have three. That's why we celebrate today, 3/21. If you would like to learn more, there are more facts on Down syndrome in a previous post.

Now without further ado….
We would like to introduce you to our adorable, perfect babies and share our thoughts on what we hope for our child's future.

Carl - Pennsylvania

Carl is an amazing little boy who truly touches the heart of everyone who meets him. As his mommy, I could not ask for a sweeter, more wonderful little man. We love him so, so much.  He continues to amaze us every day!

As his mother, I pray that as he gets older people see my son as just Carl, not his Down syndrome.  It's what he has, not who he is.  I hope people will not sell him short. I have no doubt he will be able to do whatever he wants to do if he works hard. He may have to work harder than others, but he can do it.

Noah - Wisconsin

My son is a beautiful child and I am so excited to watch him grow. He has made me a more aware, compassionate, and caring person already.

I wish I could eliminate the us vs. them mentality. We are all people who want to love and be loved in return; we are more alike than different.

Kayla - Ohio

My daughter literally lights up the room and makes every single person she comes in contact with stop and smile! You very rarely see her without a smile on her face.

I wish that other people could walk in our shoes for just one day and see just how amazing it is to have a child with Down syndrome, that way they would know first hand that there is absolutely nothing to pity or feel sorry for. After that one day, they may even ask to trade places, because they will realize how lucky we truly are :).

Mason - Pennsylvania

Mason, My 5 1/2 month old baby boy who is the love of my life, with a little bit of extra! Mason brings smiles and joy to everyone he meets. He is surrounded by such love, hope and a huge support group of friends and family that cannot get enough of him. Mason makes me, his dad, his grandparents, his aunts and uncles, better in EVERY way... He makes our days better in EVERY way.

There has been many times so far, throughout my 5 month journey as a Mom, of a child with Down syndrome that  I have been told by friends, family, "professionals" in the medical field and even strangers that “Kids with Down Syndrome are so affectionate and loving and they will be your "Baby" for the rest of your life" ... OR ..  Having a child with Down syndrome is like having a "Kid" around for the rest of your life." .. .....".Your "Baby" will never grow up" .....and the comments could continue on and on. Children and grownups with Down syndrome basically only have 1 thing in common and that is an extra chromosome. They may have similar features, but as to their lifestyle, future and personalities, they are as different as typical children without special needs. As someone who is a proud mom of a healthy baby boy, who just so happens to have Down syndrome, I would like the world to see and recognize that our children are so much more like us "typical" people, and no one should  be allowed to assume that their diagnosis would put limits and boundaries on the way they grow up and live their lives.

                                                                   Zoey - Iowa

So many things have changed since my little Zoey entered the world.  I smile more. I don't take things for granted. I appreciate life on an entirely new level.  My faith has grown exponentially. My heart has grown so full of love and appreciation for my family.  And all this in 6 short months... imagine the gifts she has yet to bring.

People with Down syndrome are really more alike than different.  They are bright, capable, funny, beautiful, charming and willing individuals. I want people to recognize Zoey for who she is and not her Down syndrome.  I want people to know we are not sad - Zoey is exactly who she is meant to be - God does not make mistakes. People with Down syndrome can and do achieve all that their peers do.  If given the chance, the sky is the limit!

                                                                Owen - Iowa

Owen rocks because he is allowing us to help others understand how precious life is.  His baby cuddles and squishy cheeks and intoxicating!

The thing I wish everyone would understand about people with DS is that that they are PEOPLE!  Each of my four children has had issues that have come up. 

My oldest was born 8 weeks early and spent 30 days in the NICU.  She has 46 chromosomes. 

My second child was diagnosed with failure to thrive just after his first birthday because of eosinophilic esophagitis due to food allergies. We spent 4 years working with specialists across the country and undergoing many endoscopies to get him well.  He has 46 chromosomes.

Our third child has milk, egg and peanut allergies and requires an EPI pen and special diet. He also happened to break his leg at 17 months and required a cast.  He has 46 chromosomes.

Then there is Owen.  He was induced due to pericardial effusion. Upon arrival, he was cleared of heart issues but did develop pulmonary hypertension.  He spent only 6 days in the NICU and came home on oxygen (which he was on for 2 weeks). At 2 1/2 months, he sleeps, poops and eats. He is a baby taking in the world around him.  He has 47 chromosomes.

All children come with challenges and I am sure we will have more to come with each of our kids.  Our plan:  keep our eyes towards the future and grow kids who will be successful, happy adults. In the meantime, we will take each moment as they come and enjoy our family.


  1. Love it Sara! Thank you so much for putting this together...these are some cute kiddos!

  2. These babies are blessed to be born to loving parents. I can’t help but get teary-eyed as I read each of the entries about these wonderful babies and their wonderful parents! Indeed, their identities are not based on their having DS. And I also believe they can be whatever they want to be! Take Chris Burke as an example. He is an American actor, folk singer, and motivational speaker. On the other hand, there’s Andrea Friedman, an actress, who portrayed Corky's girlfriend in Life Goes On. Individuals with Down syndrome, like others, can become what they want to be, as long as they put in hard work and they get unconditional love and support from their families. :) Malachi Cates