Friday, November 5, 2010

Ds Awareness Answers Part Two

If you were sitting here with me, I'd offer you a hot drink.
I'd serve you a no bake cookie, or two, or three. And I wouldn't judge you for it because you wouldn't judge me for the five I had eaten. Don't you love friends like that?
I'd have the tissues nearby...not because I thought you'd become emotional, but because I know I would.
I'm learning to accept that God is rewiring my emotional life.
Ella is beautiful. Jelly stains and all.
Right on. I just wish jelly stains were a little easier to get out of pa-ja-mas!
Does Ella even realize she is different than other kids? 
Does she ever use it to her advantage?!
Because Ella has more in common with typically developing kids than not, I don't think she sees herself as different. She loves to swim, she loves McDonald's, and she loves candy. She does go to a different classroom for reading and math, but at this age, I'm guessing she thinks all kids take their turns doing that. She is not given any advantage at home. We ask her to work hard at school, respect others, and do her share. Ella recognizes when someone's expectation of her is less than her best. She will take advantage of that. I don't think that is necessarily chromosomal but rather a personality thing.
How do you explain Down syndrome to Ella?
In time, I believe that Ella will be able to understand that she has an extra chromosome. We do talk about Down syndrome and use those words. Down syndrome is not a bad word to her, or us. She may already understand that it takes her longer to learn things.  The truth is, Ella is the one that knows what Down syndrome means. She is the one who gets to define her life. It is our job to empower and cheer her on.  Thankfully, we have a team of people in our school district and community who encourage and challenge her. I can hardly wait to see where she is going to take us.
I'm a 41.5 year old woman contemplating my second child. 
Should I be worried enough about Down syndrome to factor 
that into my decision?
I'm guessing you are wanting your firstborn to have a sibling, so I'm going to shoot from there and share with you something someone once told me when I was asking some "what if" questions while I was pregnant with Talia. They said, "I've heard you talk a lot about what this baby (Talia) will bring to Ella's life. I think the thing you should focus on is how lucky this baby (Talia) is going to be having Ella in their life." My answer is this: imagine the kind of person your first born is going to be just knowing your second born and all of their strengths ---whether they have Down syndrome, or not.
Does it ever overwhelm you or Bruce to know you may never experience empty nesting?
There are times when I am overwhelmed by life as I currently know it. There is much more prompting and teaching that goes into the dailiness of life than I ever anticipated. I used to never visit the future because it did overwhelm me. Every year that I see Ella developing and growing, I get more excited about her future. People with Down syndrome are more independent than they've ever been. Ever. Many hold jobs, attend college and get married. Will Ella choose to live with us? Maybe. I'm guessing she will choose NOT to live with us, but near us. I have a feeling she's going to think that Bruce and I cramp her style a bit. And that's good, I think.
Wow, these posts are getting longer than I ever imagined they could be.
Hopes and dreams, and the number one thing are coming sometime next week.
It'll be fun.


  1. Well said my friend. I'm sad there is only one post left - these are fabulous.

  2. I cannot wait to see all that God has planned for Lady Ella!

  3. beautiful. i know God has big plans for ella!!

  4. I LOVE your heart! I LOVE this post! I LOVE your family! I, too, am sad there is only one post left.

  5. The day that Ella was born was very difficult for us as first time grandparents. However, we chose to celebrate her life! What a precious little person Ella is, as is Talia and their cousins Owen and Maggie! Grandchildren are a heritage from the Lord! Papa and Nana

  6. Kim,

    I have really enjoyed reading your blog and seeing all the precious pics of your family ! So glad you chose to share your lives with all of us !

  7. i think for so long people have been so quiet about anything that is "different" from the "normal" child. and no one knows what to say. or how to ask questions.
    i love that you are kicking that to the curb!
    it's what everybody needs.
    ella is a blessing.
    you are blessed.


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