Undoing Down Syndrome

Today, while reading The T21 Traveling Afghan Project blog, I found this "challenge", if you will, from my friend, CJ. 
"I'm often asked if I would "undo" my daughter's Down syndrome if given the opportunity. There is a great deal of discussion regarding the extent an extra chromosome defines the individual who carries it. Therefore, this weeks prompt is "If I could undo Down syndrome...."
Go to your blog, write about this topic and then come back here and leave us the link to your post! This link system will remain active for ONE week!"

So, I am gonna bite and give it a go...

I have always said, I would never, ever change who Joseph is. Never. Joseph is one half a twinset and he was born with Trisomy 21--his brother was born with Duosomy 21. For those that don't know what that means, it means Joseph has Down syndrome and his twin does not. I would never change Jadon either; he is our adopted son born with Trisomy 21 as well.

You know, Down syndrome never rocked my world (I've stated it before on this blog--epilepsy on the other hand, KNOCKED ME FACE DOWN INTO THE DIRT). Down syndrome is what it is in my home and it is generally in the foreground around here. I don't focus on Down syndrome or Joseph's delays or Jadon's for that matter. Sure, we have therapy--a LOT of therapy sessions for the boys, but, it is what it is.

I've watched my oldest son STRUGGLE making friends because of him being gifted and so much more "cognitively aware" than his same age peers but also very immature for his age. I've seen him made fun of for his eyes. And, it breaks my heart. I HATE it for him. I would change his eyes in an instant if I could. Heck, we've gone so far as to have some 7 or 9 eye surgeries to try and correct it. We've had so many I truly don't know now if it is 7 or 9. How sad is that? I want so much for him to fit in with his same age peers. I'd love for him to be an average student. Fact is, he is not; nor, will he likely ever be.

Joseph though, I don't want to change a thing about him. Ever. I know he will likely be bullied. Kids are mean. Kids are rude. Kids are spiteful and hurtful and some parents today, many parents today, are doing a piss-poor job of raising children to accept differences and to accept people based on their humanity...the children making fun of my oldest have proven that already.

I love, truly love, the slower pace that comes with Down syndrome. Jared and Jackson (Joseph's twin) are both advanced intellectually. They both are growing quicker by the hour it seems. We have watched Jackson race ahead of his older twin brother in development and then we have the unique opportunity to relish that milestone (whatever it may be) a second time with Joseph--and now, by an amazing blessing, we will get to see it all over again with Jadon in his own time.

Jadon came home damaged, severely delayed from orphanage life. In just 7.5 months the progress he has made is utterly astounding. He walks now, mimics, says 5 words, signs, eats, plays, seeks affection. And, quite frankly, if he did NOT have Down syndrome he would NOT be my son. His birth mother would have loved him and kept him. He would not have been discarded by society, an outcast, retarded, dumb and unable to learn to do anything according to the statements read to us when we met him for the first time in Ukraine.

Would I undo Down syndrome for either boy? Nope. No way. No how. Uh-uh, you can't make me :)


love,


"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)