Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

World Down Syndrome Day: Still There

Today is World Down Syndrome Day.

Last year, on this day, I wrote about Reece's Rainbow, an International Down Syndrome Orphan Ministry, and shared our family's experience with donating to the adoption fund of a little boy named Antonio*.

(* If you read my blog post last year, you will see that I call him Alexander. There was a little mix-up at first at Reece's Rainbow as to the little boy's name... when you're dealing with hundreds of children and people speaking different languages overseas, there's bound to be some mix-ups here and there! However, we found out his name was Antonio. Just didn't want you to wonder if you noticed the name difference. And if you didn't notice, then nevermind.)

Adding to Antonio's adoption fund really felt good. It felt like we were doing something to help. I really liked that the kids were involved and, at some level, understood we were helping this little boy. (According to them, we were "sending money to buy him a Mom and Dad." Ummm..... close enough.)

Having the neat ornament from Reece's Rainbow to thank us was just icing on the cake... we liked seeing Antonio's face on our tree, and I thought about him a lot through the holidays.

Then, the seasons changed... ornaments were wrapped up carefully and stored. The Christmas tree was jammed into the box it came in though we had no idea how it fit in there put away, and life for us marched on into the new year.

I won't say that I stopped thinking about Antonio. There were days when I didn't stop thinking about him, and what it might be like to travel over to his country and scoop him up and bring him to our house.

But there were days that were filled with spelling words and muddy shoes and laundry and swinging on the swingset and cleaning gum out of the carpet and riding bikes and kissing owies, and I didn't think about Antonio.

In some ways, the year went quickly, and before we knew it, we were unwrapping the ornaments again.

When we came across Antonio's ornament, we were quickly reminded that it was time.

Time to pick out another child to help.

So, just as we had done the year before, the kids climbed up on my lap in the office chair. We typed in reecesrainbow.org and were ready to find another sweet, deserving child.

And as we looked, it was difficult to find one child that stood out more than the others... we knew all of them were deserving of a family, and so it didn't really matter who we picked.

And then we saw him.


It was a really indescribable feeling. Part of my heart felt as though I had just reconnected with a long-lost family member... part of my heart felt as though he was my child, and I had "lost" him for some time but he was back... and part of my heart was simply broken.

He was still there.

All of those days, when the kids were outside playing, laughing... arguing ... he was still there.

All of those Friday nights, when our family was having a "Popcorn/Movie" night, he was still there.

All of those moments that families share... we were sharing them, and he was still there.

It wasn't hard to pick out the child we were going to help.

He was still there.

And so, once again, the kids knew we were "sending money to buy Antonio a Mom and Dad."

And once again, Antonio's beautiful face hung on our Christmas tree... his face a little older, but still recognizable as the beautiful face that hung on our tree the year before.

Neither of the kids asked why Antonio was still there.

Neither asked why he didn't have a Mom and Dad yet.

But I wanted to.

* * * * *

Please consider donating to Antonio's adoption fund today in honor of World Down Syndrome Day.

My heart knows his family is out there... maybe a family is ready to bring him home with the help of a few more dollars in his fund.

This Christmas, when the kids and I sit down to pick out a Reece's Rainbow child to help...

I don't want to see Antonio's face.

* * * * *

For more information, visit Reece's Rainbow or World Down Syndrome Day.

Wordless Wednesday (Like Mother Like Daughter... and Son!)

Taken Care

After posting about Rylee's love of babies, I got to thinking about everything Rylee has done for her babies.

She's taught babies how to go potty on the toilet...

February 2008

and shared kisses and cuddles.

February 2009

She's smiled and posed for photos with them...

May 2008

April 2009

and made sure they were smiling and posing right along side her.

March 2010

August 2009

She's played with them,

April 2010

June 2010

kept them clean,

June 2010

and included them in the summer fun of a movie at the drive-in.

May 2010

She's read to them,

July 2010

laughed with them,

August 2009

and always kept them safe.

July 2010

July 2010

Yes, Rylee has done a lot for her babies. But in turn, her babies have done a lot for her.

Baby Megan accompanied Rylee to her sleep study so she wasn't lonely.

May 2009

She let Rylee do an echo on her heart so Rylee would feel comfortable at her annual cardiology appointment,

June 2010

and she held Rylee's hand at her eye exam.

July 2010

Yes, Rylee has always taken care of her babies,

July 2009

but, without Rylee even knowing, her babies have always taken care of her.

(Note: Most of the photos are of Rylee and her doll, Megan. Actually, I should say my doll, Megan, as she was mine when I was a little girl! I have such a warm, reminiscent feeling when I see Rylee playing with her! Rylee does a great job taking care of Megan... however, I do think that Megan wore clothes more often when I was her Mom!)

Spread the Word to End the Word

It's time again. Time to remind ourselves that our words have incredible power.

The words I wrote last year to celebrate this day still ring true today.

But before I take us back, I want to say thank you.

If you are someone who used to use the "R" word, but now stop yourself... thank you.

If you are someone who used to stay quiet when someone around you used the "R" word, but now have found the courage (and the polite words) to correct someone, thank you.

That's how things change. One person at a time.

Thank you.

Reposted from March 2010

Spread the Word to End the Word is an ongoing effort by Special Olympics and other supporters to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word.

There has been a lot in the media these last few months about the R-word. Something about Rush Limbaugh. Apparently an episode of the Family Guy. Words said by Rahm Emanuel. Reactions by Sarah Palin.

I'll be honest. I'm not sure exactly what it was all about. I'm not very good at following the news, nor do I even know who Rahm Emanuel is. From the bits and pieces I have heard and read, it sounds like there were R-words thrown around, jokes made, and most likely huge amounts of poor judgement used.

I was actually much more offended, hurt, and even angered by people's use of the R-word when we first had Rylee than I am now. I know. It sounds weird. You'd think as a Mom of a child with Down syndrome that I'd be picketing in front of courthouses to actually make using the R-word illegal. But I'm not.

Let me explain.

Do I think that people use the R-word in derogatory ways without thinking -- that more often than not, it's used out of ignorance and not out of trying to be hurtful?


Do I think it's okay simply because they don't realize how they are using the word?

Of course not. (I also think people use the word "gay" in the same derogatory way and that should stop, too.)

Do I want Rylee to face a society that will make jokes at her expense?

Absolutely not.

Does my heart break at the thought of having her feelings hurt?

For sure.

Will I do what I can to educate those around us that words hurt? Will I be sure our kids understand the power of our words?



Do I want to teach our kids that other people's opinions of them matter?


Do I want to teach Rylee that Down syndrome defines her? That what a political commentator says, what a TV show script reads, or what a stranger on the street utters defines her?

Absolutely not.

Do I want to teach our kids that the way to respond to ignorance is anger?


Do I want our kids to surround themselves with people who love them, value them, and respect them?

Of course.

Do I want them to have the skills and self-confidence to handle themselves diplomatically when they, inevitably, come across someone who says something unkind about them?


Just like everything in life, it's balance.

So, after I politely correct a person I hear use the R-word flippantly without any thought as to what they're really saying...

I will turn to Rylee and say, "But it doesn't really matter what they say, does it?"

Rylee Jayne, February 2011

* * * * *

Click here to take the "Spread the Word to End the Word" pledge.

Read Rylee's Letter "A Little Bit About the 'R' Word" (written August 2008.) You can also click here to download her letter.