Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Sunday, March 17, 2013

Who I Am

A note from Owen...
I am squishy.

I am strong.

I am cuddly.

I am ME!

A note from mom...
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. Your Owen is adorable! My son is also Owen, he is almost 4 and he has Ds too. You can find us at www.thesumulong3.blogspot.com

    1. Awesome! I can't wait to check out your blog :)

  2. Owen is the man! I wish I could just hold him and sing to him. Our Bethany (12/ds) would beg you to be his babysitter. She can't get her hands on enough babies! Thank you for sharing the some of the beauty of your blessings!

  3. I loved hearing about all your great kiddos!

  4. Lovely, and a very good point about typically-developing children having their own issues! There are no guarantees with *any* children, and our chromosomally-enhanced kids may be the easiest yet! (of course I say that, having only 1 child...LOL)


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