Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

A Trip to the Library


We read a lot at our house.

As a former teacher and collector of children's books, we have lots of books at our house. (I won't even tell you I have more than 1,000 books, because then that would lead you to wonder, "How does she know it's more than 1,000?" and then that would lead me to admit to you that I have all of our children's book in a database, and then that would lead to... well, let's just say that me admitting to all of my obsessions is another post for another day.)

So... because we are fortunate to have lots of books, we haven't ever had the need to go out and borrow books. You know, like at the library.

When Rylee was little, I took her to story time at the library quite often. But, after listening to stories with other little kiddos her age, we left. We didn't stay to browse. I really didn't see the point in checking out books because:

a) we had lots of our own books at home

b) Rylee was usually getting antsy or tired or hungry when story time was over, which was the universal sign to me as a parent for "get-the-heck-out-of-public-in-case-child-has-meltdown."

c) I was a germ freak germ-conscious parent and I was already wiping Rylee down with anti-bacterial wipes after leaving the library... I didn't think I needed to bring books into our home that most likely had an adorable (but snotty-nosed) little kid holding it just days before us.

d) I really didn't want to have to remember to return a book to the library... especially a book that Rylee wouldn't show any more preference to than any other book we already had once we got home. (A.K.A. She wasn't picky. A book was a book.)

Fast-forward to days with Carter.

When he was about one year old, story time at the library nearest to our home always fell at an inconvenient time. Either Rylee was just getting done with school, or it was Carter's naptime (still unsure of the thinking behind a story time for one-year-olds at the most popular time of day for naps.) So, we never went.

And again, because we didn't really need to borrow books, a trip to the library seemed unnecessary.

I'm not sure what got into me on Monday. Maybe I was feeling a little bored by our own books. Maybe I was feeling a little guilty that Carter has been playing on his own a lot lately in the mornings while Rylee is at school because I've been doing lots of volunteer work and I haven't made good "quality time" for him.

Whatever the case may have been, we went.

We went to the library.




He was excited. Not really EXCITED, but just excited. He looked at a few books here and there, but kept asking me where the Toy Story books were.




He didn't look for too long before he found something that caught his eye...

Good 'ole Blues Clues.

Now, both kids used to be really into Blues Clues. In fact, Rylee's 5th Birthday Party was a Blues Clues party. But in the last year or so, the cute little blue dog hasn't interested them much.




Until today.

It was almost like he'd found a long-lost friend.




So, we sat down to read a few pages of the book. (We probably would have finished the whole book except that Carter heard another little boy ask his mom where the movies were. Carter's ears perked up, and he turned to me, "MOM! They have MOVIES here!" *sigh* What ever happened to the good 'ole days when libraries only had books?)

So after talking Carter out of a movie, I told him that we could check out the Blues Clues book. I had to explain to him that it wasn't like a store -- that we were only borrowing the book for a bit, and then we'd bring it back so other kids could check it out. (I guess I didn't need to tell you how that all works... you've probably been to a library.)

(One quick note: having my camera there in the library elicited lots of strange looks. I guess taking pictures at the library is looked upon quite similarly to shouting at the library. I wonder if someone has ever shouted while taking pictures... they probably had their library card revoked.)




We waited at the desk, and when it was our turn, the librarian asked for my library card. When I said I didn't have one, she asked for a photo ID (all the while treating me as though I was un-American for not even having a library card.) While I was tempted to explain to her my reasons for not having a library card, and rattle off a list of books I had read to my kids that week -- you know, just so she knew I wasn't neglecting literacy in my house -- I realized that I didn't owe anyone an explanation. (You know, like the explanation I have given all of you here on my blog.)

Anyway, I ignored her disbelief in my lack of library-card possession, and instead talked to Carter about his book.





Now, I'd love to end this story by telling you that Carter hasn't put his library book down since we got home. I'd love to tell you that we've read it several times each day. I'd love to tell you that our trip to the library was so meaningful that Carter can't stop talking about it, and that we're heading back there next week.

But, instead I'll tell you that after stepping outside the doors of the library, Carter asked if I would hold his book for him. H wasn't interested in his book on the ride home. Rylee got home from school shortly after we got home, and Carter did show her the library book. But, after sharing a quick laugh at the picture of Green Puppy and Magenta (Blue's friends) on the book's cover, Carter set the book on the counter and they both ran outside to play.

I've asked Carter several times since then if he wants to read his library book.

"No fanks, Mom."

*sigh*

If anyone wants to borrow my library card, you can. I won't be needing it anymore.



(Note: Another disclaimer... you know, in addition to the one about me reading to my kids. I do comb Carter's hair. It was a wacky hair day in which his hair didn't respond to any sort of combing or teasing or spraying or gel-ing.... I think his hat just got the best of his hair. Just had to get that in there.)

Wordless Wednesday









Reconsidering...


We talk a lot about going to Kindergarten. Because Carter and I take Rylee to school each day, the conversation of when he will get to go is a natural one.

Me: "Carter, when you are five, you will get to go to Kindergarten."

Carter: "I no like Kin-e-gah-tin. I say wif you, Mom."

Me: "Kindergarten is lots of fun! Rylee loves seeing her friends each day and learning new things!"

Carter: "I no like Kin-e-gah-tin. I say wif you, Mom."

Me: Subject dropped. No use in trying to talk him into all the fun that Kindergarten will offer him. And no reason to mention that this fall, he will be going to preschool. We'll cross that bridge when we get there. Hopefully by then he'll be sick of me and will want to go.


And now... a few days ago, Rylee came home from school and mentioned that she watched a dinosaur movie. Our conversation that day went something like this:

Rylee: "Dinosaur movie! School!"

Me: "You got to watch a dinosaur movie?! Wow!"

Carter: "Wah-wee! (Rylee) You watched a dino-sah movie??!!!"

Rylee: "Yeah!!!"

Carter: "Did you watch Toy Story, too?"

Rylee: (giggling) "No!"

Me: "I don't think they watched Toy Story, Carter. They probably watched a dinosaur movie so they could learn about them. At school, you get to learn about lots of fun things -- like dinosaurs!"

Carter: "Mom... when I five, I go to Kin-e-gah-tin. I learn about Woody and Buzz! I watch Toy Story!"


So, I guess with the mention of possible movie viewings, he's reconsidering his position on attending Kindergarten.


Wordless Wednesday













World Down Syndrome Day: Reece's Rainbow




World Down Syndrome Day was established by Down Syndrome International in 2006 to commemorate, create, and accomplish a level of awareness and understanding of Down syndrome... to highlight the potentials and abilities of people with Down syndrome. (The date of March 21, or 3-21, was chosen because individuals with Ds have 3 copies of the 21st chromosome.)

Our family celebrates Down syndrome in different ways throughout the year. Though Down syndrome doesn't define Rylee, it is a part of who she is, and we embrace that part of her whole-heartedly.

Unfortunately, there are many kids who have extra chromosomes, but don't have families to embrace them.

Last year, I became aware of this.

And so, on this day -- World Down Syndrome Day -- I want to share it with you.

Reece's Rainbow is an International Down Syndrome Orphan Ministry. Their mission is vast: they not only raise awareness about children with Ds in foreign orphanages and their availability to be adopted, but they raise adoption grant donations for each child waiting, and help guide adoptive families through the adoption process.

I have learned a lot on the Reece's Rainbow website, but I have learned even more by reading blogs of families who have adopted children with Ds through Reece's Rainbow. (I am definitely not an expert on this... the families who have lived through this adoption process know first-hand what Reece's Rainbow does for children. I just want to share what I have learned through their stories.)

You know... here in the United States, we may have to deal with the occasional narrow-minded individual regarding individuals with Down syndrome. We may have to correct someone who, without thought, uses the "R" word. We may have to work a little harder at times to get therapeutic services for our child with Down syndrome.

But in some other countries? It isn't even socially acceptable to bring your child with Down syndrome home from the hospital.

Seriously.

Babies with Down syndrome are literally abandoned at the hospitals, only to be sent to orphanages where they will spend a few years. Eventually, (between 3-5 years old, depending on the country) they are transferred to institutions. They become no longer adoptable.

So, that's it. That's their life. All because of an extra chromosome.

The thing is -- there isn't a lack of families wanting to adopt children with Down syndrome. It's the financial aspect that holds many families back. (It is very spendy to adopt overseas.) Reece's Rainbow helps raise money for these kids, creating grants for each child to which people can donate.

In December, we sat down with Carter and Rylee at the computer. We opened up the Reece's Rainbow website. We explained that these children didn't have families, and that it cost a lot of money for them to find families. If we sent a child some of our money, we could help them find a family. (Did the best we could explaining to a 6- and 2-year old!)

So, I was hoping Rylee would "connect" with a child's photo -- that in looking at the pictures, she would find a child she was really drawn to -- it would definitely make choosing a child to sponsor easier. (Of course if we could send money to every single child, we would.)

But, in typical Rylee fashion, she pointed to nearly every child, saying, "He's cute." "She's cute." "She's cute." "He's cute."

Not exactly helpful in narrowing things down for me.

So, we settled upon a little boy with whom I share a birthday.

Alexander.



We sent a donation to Reece's Rainbow to be put toward Alexander's grant. At the time of our donation, Reece's Rainbow was thanking donors by sending a Christmas ornament with the child's picture you sponsored on it. A week or so later, we received our ornament.

Beautiful ornament. Even more beautiful little boy.

A reminder that a little boy, oceans away, needs a family.

There isn't a day goes by that I don't think about these kids.

There isn't a day goes by that I don't hear of or run across the blog of a family who has just committed to adopting a child through Reece's Rainbow.

There isn't a day goes by that I don't wish these kids had families to embrace them...

all of them.

Even... no especially... the extra chromosome.



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

Luck




"Success or failure apparently brought by chance rather than through one's own actions."





Not sure I really believe in luck.





I think I have more control over my life than chance.





But if I did believe in luck,





I guess I'd say that





I was pretty darn lucky





to have these two goof-balls





in my life.





(Our big goof-ball was unavailable for pictures... I guess she'd say she was the "lucky" one!)

Happy St. Patrick's Day!

How Things Look

I have more blog posts stored up in my head right now than I've been able to capture on the keyboard. The last few weeks I've been very busy with the volunteer work I do for our local Down Syndrome Association called "New Directions." (Maybe almost a little too busy.) I'm working with a website designer to create a website for us (I know, long time comin'... saying our association doesn't have a website in the year 2010 is a little embarrassing, actually.) In all fairness, our association was super-small and not very active when I joined 6 years ago... we weren't even an official non-profit organization, and no one even knew who we were. In 6 years, the other board members and I have done a lot to move the association forward. Looking back and seeing how far we've come is exciting and makes all of us that have worked so hard these last 6 years very proud. There. I said it. I felt the need to give myself a little pat on the back in front of all of you. Now, I'll go back to being modest.

I am also Buddy Walk Director for our local walk (to be held Sept. 11 this year) and planning has just begun -- we're off and running! AND, this Thursday, I am leaving for Kansas City to represent our association at the Down Syndrome Affiliates in Action annual convention. I'm excited to get to meet other people active in their own local associations, and bring back lots of great ideas for our group.

So that, along with cleaning mascara off the carpet, planning a little boy's 3rd birthday party, digging Buzz Lightyear out of the floor vent, celebrating my hubby turning thirty-something, and taking pictures of this cutie wearing her sunglasses is what I've been up to these days.

Nice transition, right?

Oh, the sunglasses.





Rylee is in L.O.V.E. with her sunglasses. As the huge mounds of snow begin to melt into huge sopping-wet lakes of mud which have created a forceful magnetic-like attraction in our kids, especially when they are not wearing their boots the temperatures rise above the 20's, and Mother Nature teases us with signs of spring, Rylee's love of her sunglasses has emerged again.

For Rylee, these sunglasses make the world look different (not to mention orange.) If she's in a bad mood, putting on her sunglasses suddenly makes her feel better. If she's tired, her sunglasses help give her a little more energy to make it until bedtime. If she's feeling sad that her little brother was a little bit too loud at the table during lunch (as he has discovered his love for listening to himself make loud noises) she'll put on her sunglasses and suddenly the noise is a bit more bearable.





Yes, these sunglasses are almost magical.

Oh, excuse Rylee a second while she makes an important phone call... either that or she's "testing" (texting) someone.





Rylee has even worn them to bed a few times. I think they even managed to stay on her face the whole night. Makes me wonder if her dreams were more exciting with them on.

You know, it makes me think. Maybe Rylee's trying to remind me of something.

If something doesn't seem to be going quite "right", just look at it a little differently.

Just changing the way you look at it will change how it looks.





Thanks Rylee. May I borrow your sunglasses? Instead of being "a little too busy these days," I see now that I am very lucky to have things in my life that I am passionate about.

Ahhh, yes. The sunglasses. Life just looks better with them on.

What You Get


This is


what you get


when your 6-year-old


finds the camera of


your 15-year-old



on the kitchen counter.




Spread the Word to End the Word


r-word.org


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?

Yes.

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?

Absolutely.


However...


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

No.

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?

No.

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?

Absolutely.


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?"





Read Rylee's Letter "A Little Bit About the 'R' Word" - written August 2008.