Thursday, October 24, 2013

Day 24: Otto and Nicholas

Meet Otto! He is 23 months old.

Biggest challenge Ds has brought to his family: I'd have to say life with Otto has been tremendously anticlimactic. We received our diagnosis after he was a day old, or rather our suspected diagnosis. But once your doctor says, "I think...blah blah blah...markers for Trisomy-21...blah blah you know what that is...blah blah blah," your mind goes a gazillion places, and let me say those places are not based in reality. Okay, that being said, heart surgery sucked. Seriously. It was a horrible thing to offer our sweet three month old over to have his little body cut open and his heart sewn up. There is nothing in the world like that. However, since that one thing, Otto has been tremendously run-of-the-mill. Yes, he's behind in gross motor skills. Yes, he's behind in fine motor skills. Yes, he's behind in speech. But so what? Does every kid do everything they are supposed to when they are supposed to? Nope. And you know what? Even though we supply Otto with the tools he needs to reach his goals as best he can, he's doing just fine. Is his weekly physical therapy helping? Is his weekly occupational therapy helping? What about the two days a week he goes to Early Intervention school? Yes, they are all helping. They are helping a lot. What exactly are they helping with? They are helping Otto to be the very best Otto he can be on the timetable that Otto needs. The Down syndrome diagnosis for us just meant we have a different kind of normal. We are still figuring out what that means and that is OK with us.

Coolest thing about Otto: Down syndrome. Trisomy-21. Developmentally delayed. These are just words. They have meaning but they don't define anyone. This is Otto. He is 23 months. He is awesome. He says two words clearly: yes and mom. He signs lots of words: banana, more, food, please, daddy, mommy (sometimes it's the same as daddy), no, cracker, hurt, fish, bye-bye, diaper. I must say that seeing him sign and be successful in communicating is the most awesome thing ever. He gets frustrated because he wants you to understand exactly what he wants. We have this fun game--or really not very fun and not much of a game, but it definitely is a back-and-forth that happens every day. He cries, or rather complains, and I guess what he wants. "Do you want water? Do you want milk?" (All the while signing.) He continues to fuss until I say whatever magic word he had in his mind. Usually it's milk or some sort of food. But tell me, how is that different from trying to figure out what any little person wants when they are too tired, too fussy, too young to tell you? You know what? It isn't.

Meet Nicholas! He is 18 months old.

Biggest challenge Ds has brought to his family: The biggest challenge we have had so far is the heart wrenching process of going through a prenatal diagnosis. These days, my main challenge is probably the mother-guilt associated with whether I'm doing enough to encourage his development! Now that we have this beautiful boy in our lives, though, we try to just enjoy each moment and face each day as it comes.

Coolest thing about Nicholas: His white-blonde hair, sparkly blue eyes, and big smile are pretty amazing. But I love watching the love between him and his two big brothers (who are 3 and 5). They absolutely love him to bits.

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