Wednesday, November 25, 2009

Life with Down Syndrome


So the other day I was in the bathroom with all 3 boys changing Tiago's poopy diaper. Since I have 10 stitches on my knee cap I couldn't get up to turn on the water in the shower. In desperation as to not get poop all over the place, I asked Phoenix to turn it on and HE DID IT! It was so exciting!!! I was yelping and PRAISING him like crazy, "Great job! Thumbs up for following directions!". The whole thing almost brought tears to my eyes; I was so proud of him for being so helpful, responsible and for doing what I asked!

And then I just had to laugh and smile to myself and thank God, seriously, for giving me a child with Down syndrome. We get to be excited about the smallest things! I'm not saying that we have low expectations for Phoenix, but somehow some things are a big deal when Phoenix does them. Not only do we get to get excited a lot, we also get to be part of some pretty cool "clubs"- joining families with a child with DS and special needs in generals in supporting each other and sharing information. Additionally, we now know a plethera of therapists and have gained knowledge from them in areas we never thought of before! Most importantly, Phoenix provides us with opportunities to grow. He challenges us often in the areas of patience (grrrr...I am not always a willing student!), tolerance and human dignity and our own inhibitions.

I grow most when Phoenix acts with a total lack of inhibition. I love when Phoenix laughs really hard in public (the kid even laughs in his sleep!) and/or reaches out to strangers. In terms of laughing, the parent in me wants to tell him, "Use your inside voice", "Not so loud, please, we're on a bus!" because I can't say, "DON'T LAUGH SO HARD! THAT'S BAD MANNERS!". That sounds so ridiculous but I think on some level that is what I mean. I'm uncomfortable with someone just laughing their head off. Its socially abnormal and the fact that my child is doing it embarrasses me. And that is when I'm stretched! Why shouldn't we just have a good belly laugh session on the bus sometimes??? Regarding touching, again the parent in me wants to say, "Control yourself", "Don't touch strangers". But once at church they had this great message called Touch and how important it is, especially when breaking down our fears of the unknown/unfamiliar, for example, people who are handicapped, have special needs, a different ethnic background, whatever our fear is. After that message a woman I didn't know smiled to 2-month-old Phoenix (who had an oxygen cannula in his nose and an oxygen tank beside him) and he gave her a HUGE grin back and this was before he could even smile! She wrote me a letter and told me he had changed her life and that she knew he would continue changing lives. What encouragement for me! So, for the moment, I allow Phoenix to stretch me and stretch others by ignoring certain inhibitions.

I don't have that "perfect angel, sent from God, always happy" Down syndrome child (I doubt that stereotype really exists). He throws fits when he doesn't get his way, often wakes up the whole family at 5:30 am, is a picky eater and just wants to watch tv all the time (this one really gets me!). But in my opinion, I have the most lovable 4-year old son who enriches my family's life daily. Amen!

4 comments:

Melanie-Pearl said...

thanks for the "peek". life is richer on the gritty side. always have thought so.

Sarah said...

What a wonderful post, Cortina. Thanks for sharing these things!

west family member said...

Just wanted to say 'hi' from Chicago. I came across your blog while doing a search for life in the arctic circle (which was prompted after reading an article on CNN about an Alaskan town). I love the pictures. You have a beautiful family. I love the names, too. May God Bless you all. check out our blog at www.freakyhomeschoolers.blogspot.com :)

Tricia said...

I love you. I love your whole family. I think about you often now that it is officially freakin freezing here in Chicago, and was bragging to Patrick that he can't complain it's dark early, you only get one hour of sun AND have to entertain three kids all day.

I love having this window into your life, you share so honestly. Thanks for your openness, and though I am far away, I am sending you hugs! Love you cortsa!