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Tuesday, December 28, 2010

The Year End Truth of It

As the end of the year looms closer, I feel like I should do something to wrap it up in style.

This blog has been up since September and what it has accomplished already, kind of makes my head spin. I've said that this blog was not my idea. It was something that made my blood pressure go up, just thinking about it. In order for it to work, I had to be more open that I really like to be. But, God has blessed me with it. I feel like I've gotten more from sharing my heart and from collecting the brilliance and hearts of others...Thank YOU for being a part of this!

I hope that you all continue to be involved and that we can, together, reach out to those who need and want the cameraderie that this forum could allow us to have. I know that I treasure the gift of fellowship, of community, of the sense of a secret society...of knowing that I am not alone.

In conclusion, I'd like to share a quote from a movie, that I think sums up a lot in just a few words:

"You are what I never knew I always wanted." ~ Fools Rush In

I am sure that virtually every single one of you who has children with special needs, whatever they are, can relate to this. The battles are difficult, but the rewards are sweeter than we ever dreamed.




Thursday, December 23, 2010

The BIG FAT WINNER of the Twelve Days of Christmas!!!



The Winner of the Twelfth Day of Christmas is Kimberly Sarff. Wear that amazing charm, proudly!!! Celebrate what it symbolizes!!


For those who have been curious about the winners and how they were selected, here is the how and the final list.


I used http://www.random.org/ to pick each of the winners for each of the Twelve Days of Christmas. So I couldn't be accused of picking buddies or anything. I posted the winning numbers over on the Facebook pages of both Just a Little Bit Downsy and Band of Angels.


The list of Winners:
1. Kim Wonnacott-Reynolds
2. April Nisly
3. Lynn Wyche Dotson
4. Heather Parton Berger
5. "Dreaming" Cyndi
6. "Dreamer 13"Karli
7. Erica Allen
8. Melissa of http://www.gardenofmyheart.wordpress.com/
9. Deborah of http://www.sunflowermom.blogspot.com/
10. Carrie Timmermon
11.Gina Carrera
12.Kimberly Sarff

Congratulations, again, to all the winners!!! I think I was as excited handing them out as you were getting them!!


I messaged them or emailed them to alert them of their winnings and passed their information on to Cynthia and/or Liz of Band of Angels and they will be sending them their goodies....


So there you have it. THANK YOU for playing along and making this SOOOO successful!!! 321 entries...Woah, Baby!!


I hope that you will continue to be involved with Just a Little Bit Downsy and Band of Angels...we both try to offer support, try to answer questions, and make our "club" as close as possible. We are resources, use us and give us information to share.


I hope to have 1 or 2 guest posters on each month to share other perspectives...and to let others know "You Are Not Alone!" I am always looking for books, news tidbits, and people who could use a little help or a bloggy hug...or even questions that I can answer, for "us" or "them"...Please don't hesitate to contact me for any reason. underwater9800@gmail.com


Merry Christmas!!!

Wednesday, December 22, 2010

On the Twelfth Day of Christmas Band of Angels Gave to Me a Halo with a Twist

Whether you believe your beloveds with that bonus chromosome are angels or they just bring you close enough to hear the angels' laughter, today's mind blowing giveaway is more than appropriate!

Today, on the Twelfth and "final" Day of Christmas, Band of Angels is giving away a Halo with a Twist Charm!!! Isn't it absolutely gorgeous?!?! Don't you absolutely want it??? ENTER TO WIN IT!!!

For a Bonus Entry for the 12th Day Biggie!! If you "Fan"ed/"Liked"/followed Band of Angels or Just a Little Bit Downsy because of the giveaways and liked them so much you plan to stay with one or both, please send me an email at underwater9800@gmail.com with the subject line "Liking and Staying".

If you did some or all of the below entries, RE-STATE them today!!!!!!!

And the other ways to enter:
1) JUST COMMENT!! :) (Here or on Band of Angels or Just a Little Bit Downsy's Facebook pages!)
2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL


*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Tuesday, December 21, 2010

On the Eleventh Day of Christmas Band of Angels Gave to Me a Set of Christmas Favorite Cards

On the Eleventh Day of Christmas Band of Angels gave to me a beautiful set of Christmas Favorites Cards. Actually this is a set you can customize! Because we're cool like that!! HA!

There are two images and you can choose all of one or 6 of each...or whatever combo you'd like for 12 cards.

The card options:


Snowflake Cookies



Holiday Fun

Aren't they ADORABLE!!! It'd make you thankful that you are running behind on your Christmas card sending, wouldn't it, now?? :)

Keep in mind tomorrow is the Twelfth Day of Christmas so MAKE SURE YOU ARE ENTERED!!!

Bonus Entry Today for the 12th Day Biggie!! If you "Fan"ed/"Liked"/followed Band of Angels or Just a Little Bit Downsy because of the giveaways and liked them so much you plan to stay with one or both, please send me an email at underwater9800@gmail.com with the subject line "Liking and Staying".

And the ways to enter:

1) JUST COMMENT!! :) (Here or on Band of Angels or Just a Little Bit Downsy's Facebook pages!)

2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have

3) Follow Band of Angels' Blog and comment here that you did/have

4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have

5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have

6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL

7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment

8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends!And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!! (Every entry on any of the other Days of Christmas gets you an extra entry!!)


*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Monday, December 20, 2010

More Musical Mulling

I have been mulling this one over for almost a month...trying to figure out how to say it and make you realize that I am really not being negative!!!

When I was little, music was my absolute life. I listened to music completely non-stop. If I had my way, my record player was never silent. I sang my daily requests to my mother, "Can I have grilled chee---ese for luuuuunch?"I had big dreams of trying to make a profession of it when I was an ancient 15 year old. And again, my tape player was never silent. In college I realized that I only had a medium-ish voice and that I would be much more successful in teaching or one of the therapy fields...And my CD player was never silent.

I listened to folk, classical, blues, rock, alternative, punk, jazz, yodeling nights on NPR, and even had a brief flirtation with rap...I discovered Country music about 2 years before I had Elise...and when I got pregnant with her, story songs were a very common thing for the country music stars to do...I boo-hoo-ed over these story songs...so constantly that I cut myself off...

When I had Elise, I fairly abruptly stopped singing my way to work...mind you, I listened to it...and it was like therapy running over my head...but I found my life and our now uncertain future (like we had any certainty before-hand?) very heavy...and it had weighed me down so much that I didn't have the energy to sing...

When we met Elise's open-heart surgery head on, my speakers in my Camry blew...randomly, with no warning and for absolutely no reason. I was astonished...and somewhat relieved. It was not fixed...we didn't have the money and the Camry had far bigger problems than the speakers...and we weren't sure it would even be worth it to fix them...

The peace in my car allowed me to chat with my baby girl to and from work. After her surgery she was not allowed to return to the daycare that she and my son had been attending, and a friend who lived (miraculously) 5 minutes from my school was able to watch her for me...

Then we had to watch the cancer coming...and then deal with the treatment...and on the times I drove my husband's car, I would turn on the radio and RANKLE under the songs...the insipid words and the unreasonable values they celebrated...the pointlessness that chirped from those speakers as we were fighting for our baby's LIFE...and I turned it off voluntarily...and listened to the wind whistling by my open windows...and was at peace.

After she had come home healed and whole, and I finally got a new vehicle, I listened to an excess of children's music...and occasionally listened to country...which was the only music I could suffer for years...the songs may still twang a bit for some folks, but as a whole, it celebrates common life...love, family, struggles...the little stuff that is really the Big Stuff...

Elise LOVES music and it was one of my posts for her "31 for 21" in October.

It is interesting how this all happened...I mean, I still love music. It still moves me. As a matter of fact, I am doing a Christmas Carol each day leading up to Christmas over on my personal blog, Sticky Elephants...but I hear more... Elise has sharpened my awareness on many levels...I wrote about smell last month...It appears that I may have to hit the others of the 5 senses... I'm teasing...but seriously, how I hear music has changed for me.

I have a hard time listening to songs that value the "wrong" things. I get absurdly moved when I find a song that celebrates life or the little things that I actually see...the things that got lost before I had to look for things to celebrate...health, mini miracles, answered prayers, "normal, boring" life. I got treated to Elise singing "Ave Maria" last night with Josh Groban, and about wrecked the car from crying over the purity and joy of the song...

I have heard a quote that said being a mother was "like taking your heart out of your chest and watching it walk around"...for me...my music runs around along with my heart...Elise houses the music of my life...I think it makes me appreciate and enjoy it more. One more way I feel that I get to experience the "More" with that bonus chromosome...sometimes I wonder if that extra 21st affects me and our family more than it actually impacts her...and I am Thankful for the "More" in our lives....Really.

On the Tenth Day of Christmas Band of Angels Gave to Me a "1 in 800" T-Shirt!!

On the Tenth Day of Christmas Band of Angels gave to me a "1 in 800" Down Syndrome Awareness T-Shirt!!

Oh, I love this one!! For the same reason I liked the Autism Awareness shirt, the "1 in 150"...The graphics are amazing and edgy...and they bring to the attention the fact that Down Syndrome is not something that we are ashamed of and that we ARE NOT ALONE...

Win this, or (go buy it !) and start some conversations!!! And look super sharp while you're doing it!!

Bonus Entry Today for the 12th Day Biggie!! If you "Fan"ed/"Liked"/followed Band of Angels or Just a Little Bit Downsy because of the giveaways and liked them so much you plan to stay with one or both, please send me an email at underwater9800@gmail.com with the subject line "Liking and Staying".

And the ways to enter:

1) JUST COMMENT!! :) (Here or on Band of Angels or Just a Little Bit Downsy's Facebook pages!)

2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have

3) Follow Band of Angels' Blog and comment here that you did/have

4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have

5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have

6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL

7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment

8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends!

And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!! (Every entry on any of the other Days of Christmas gets you an extra entry!!)


*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Saturday, December 18, 2010

Ninth Day of Christmas Band of Angels Gave to Me a "My Baby Can! Calendar"

On the ninth Day of Christmas Band of Angels gave to me a My Baby Can! Calendar!!

Oh, I SO wish they had had this one when Elise was a baby!!! This is a celebration of the usual milestones and more than that, too! So, UNlike my regular baby book calendar, whose milestone page BLANK for almost 2 years...you have stickers of celebration and information to fill out regularly!! Plus, it's super cute!!!

If you have a new baby, this is a MUST (second only to the Common Threads book, in my humble opinion). If you know of a new baby, this would be an amazing gift! Really, get the word out and get the celebrating started!!!!!

And the ways to enter:
1) JUST COMMENT!! :) (Here or on Band of Angels or Just a Little Bit Downsy's Facebook pages!)
2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends! And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.
And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!! (Every entry on any of the other Days of Christmas gets you an extra entry!!)

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Friday, December 17, 2010

Lost winner!

Dreaming...you won the 5th Day of Christmas card set...and I can't seem to contact you...please email me at underwater9800@gmail.com!!!!

On the Eighth Day of Christmas Band of Angels Gave to Me a Common Threads Hardcover Book!

On the Eighth Day of Christmas Band of Angels gave to me a Hardcover Common Threads book, SIGNED by the incomparable authors!!! Again, and over and over, the hope and joy that this book contains is just amazing!! I adore it...and it is a beautitful celebration of life that is fitting for any coffee table whether you have a beloved someone with the bonus 21st chromosome of not!!

Oh, and because I'd like to get the to the 12th day of Christmas up before everyone starts running insane, I am going to be doing a giveaway on Saturaday and Sunday AND because of the CRAZiness of this weekend, I am going to draw for all 3 days on Monday morning!! SO GET THOSE ENTRIES IN!!!!

And the ways to enter:
1) JUST COMMENT!! :) (Here or on Band of Angels or Just a Little Bit Downsy's Facebook pages!)
2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends! And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!! (Every entry on any of the other Days of Christmas gets you an extra entry!!)

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Thursday, December 16, 2010

On the Seventh Day of Christmas Band of Angels Gave to Me a Life Links Bracelet!!

On the Seventh Day of Christmas Band of Angels gave to me a LifeLinks Bracelet with Halo in pink or black!!! This is SO cool!!! I am dying for one, myself...and at $14.99, it is totally affordable!! And something even snobby tweens and teens would wear!

Enter today for a chance to win this stylin' bracelet and to get an extra entry for the fabulous Biggie giveaway on the "Twelfth Day!"

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan (or Like) Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan (or Like) Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends! And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!! (Every entry on any of the other Days of Christmas gets you an extra entry!!)

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Wednesday, December 15, 2010

On the Sixth Day of Christmas Band of Angels Gave to Me OPTIONS!

The Sixth Day of Christmas giveaway is a another card set! You can choose if you want the Boys with Toys or the Girls being Girls...Until I decided to add an option for the 5th day of Christmas, I didn't know how I was going to be able to offer these two beautiful sets without leaving somebody out! BUT, now I know....CHOICES!!

One of the ideas in the Birthday Cards description was invitations, and wouldn't both of these sets be adorable invitations?? Or "Welcome to the Club" cards?? So many great ideas!! Or as I suggested yesterday, mat these babies and decorate your sweetie's room...Such great options!! Enter!!

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends! And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!!

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Tuesday, December 14, 2010

On the Fifth Day of Christmas Band of Angels Gave to Me a Set of Black and White Friendship cards

I love all the card sets!! They are all beautiful and such great cards to send notes to friends...These are the kind of cards that I save and keep for special occasions and then can't send them and keep them just to look at...yes, I'm that girl! Hopefully YOU will use them more wisely! The Fifth Day of Christmas giveaway is a Set of Black and White Friendship cards!

Since I'm not getting any bites today, I'm changing it up a bit! You can choose if you want the Friendship Cards or the Birthday Cards and I'm going to extend this particular giveaway until midnight, tonight...

When Elise gets her own room, I plan to frame a card set and old calendar pages for her room decorations...but right now, there are a lot of other things smiling down at her and her sister...and Amelia does not like change and cannot be budged, right now...

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends!And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too. And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!!*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Monday, December 13, 2010

On the Fourth Day of Christmas Band of Angels Gave to Me a 2011 I Am Beautiful Calendar!!

Today's giveaway is the 2011 I Am Beautiful Calendar. EEEEE!!!! This was the first reason I fell in love with Band of Angels!! It is practical and beautiful!!! This year's also has some support and bonuses, too. I truly love it... You NEED this one, really! :) ENTER!!!!!

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL Tell your friends!And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!!

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, or you are not a "bloggy person" you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Friday, December 10, 2010

On the Third Day of Christmas Band of Angels Gave to me a really cool"1 in 150" T-Shirt

It's going to be a little trickier today. A LOT more responsibility gets placed on you readers!!! I know A LOT of places to post up information for parents of kids with Down Syndrome. I will be hunting to post up information for parents with kids with Autism....so you are going to have to REALLY tell your friends!!

For the Third Day of Christmas, Band of Angels is giving away an Autism Awareness T-shirt. One of the "1 in 150" shirts. I have to say I love the graphics and they are a really cool shirt! I think this will really get people to ask and help people know that it is a common struggle. I hope you'll enter and make sure your friends know about it!!!

To make sure that you have enough time, the "Third Day" giveaway will run through Sunday night. So get the word out there!!!

I will up the ante a little today and if you tell your friends and they email me (underwater9800 at gmail.com) and tell me that you did, I will give you an extra entry.

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL Tell your friends!

And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too. And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!!

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Thursday, December 9, 2010

Secrets of the Band of Angels Website

I've said how much I love this company, their products and their values...well, it just keeps getting better...I have been treasure-hunting their website feeling like a regular Indiana Jones!! And I thought that if I have allowed all these treasures to pass me by, perhaps others have missed these secrets, too.

Well, NO MORE! Here are some of the coolest spots (in my very humble opinion) that Band of Angels has to offer!

They have a brothers and sisters section. I was MOST excited about this particular gem. I have only one child with Down Syndrome. And I have three other children. I am their mother too...and I love them and hope and pray that I mother them properly and meet their needs. I also pray that the "extra" that Elise brings to our family is a blessing and grows them, instead of causing them to feel like less because I neglect them in meeting their sister's significant needs. I obsess over this sometimes...and have craved the perspective of siblings... (As a matter of fact, I freaked out a fraternity brother of my husband, hunting him down and begging him to be a guest blogger...he did say yes, and he'll go up in January. Which is when I hope to have 2-4 guest bloggers on Fridays each month...as usual, if you are interested, give me a shout!) BUT I am SO excited that Harper Kidder decided to make his mark on the community, reminding us that the siblings of kids with special needs have special needs of their own, with all the extra that they have to deal with...and what a blessing to see the joy that they "catch" from their brothers or sisters, with Down Syndrome, in this case...

They have a blog! Totally didn't know this either! This blog posts what activities the company is involved in supporting, the opportunities they are offering or making, their new products, sales, and product spotlights. It's really cool. I am constantly impressed how open this company is with their opportunities, their giving, and their mission. I have not found one single thing that makes me raise my moral eyebrows...and nowadays that is harder and harder to come by!

They have a Bike Camp for kids with special needs, it originated for kids with Downs, but I found several sites where they linked up with other organizations focused on Autism, and other groups. It's a simple need that they acted on. Many of us take for granted the childhood "right" to riding a bike. Many, if not most, kids with profound physical and mental involvement truly struggle to ride a bike, if they are even offered the attempt. The Band of Angels Bike Camp, set out to make this "rite of childhood" available to kids and even adults with Down Syndrome...opening it to other special needs as well. They boast an amazing success rate for confidence and independence!

Finally, I'll brag on their opportunities...they don't just act on their own...they encourage YOU to make a difference! They have specific outreach programs for you to act on. They list them all out and tell you what you can do to encourage and support each one!! You can donate toward specific missions and know that you are truly making a difference...and you are encouraging the JOY in someone else's life!

SO, if you go find any jewels that I should have put up...comment here or on the link and I'll totally give you an extra entry for each goody you share, on the Twelfth Day Biggie , the Halo with a Twist charm!

Wednesday, December 8, 2010

On the Second Day of Christmas Band of Angels Gave to Me, A Paperback "Common Threads" Book

I will contact the winner of the First Day of Christmas in the morning and post it then.

On the second day of Christmas Band of Angels gave to me, a paperback copy of their amazing Common Threads book.

Okay. This is my heart I'm putting out here for the next giveaway. It I don't get a million entries. I will cry. I will. Totally!

This is the book that changed my perspective on my sweet baby girl and I know that it will change your perspective! Everyone who reads it will have their eyes opened to the beauty around them! It is more than a beautiful book of photos. It is more than a stellar coffee table book. It is a pathway to understanding the same-ness of us all.

And the ways to enter:
1) JUST COMMENT!! :)
2) Fan Band of Angels on Facebook and comment here* that you did/have
3) Follow Band of Angels' Blog and comment here that you did/have
4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have
5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have
6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL
7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment
8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Tell your friends! And yes, if you did all the entries on a previous entry, you can state them again for this giveaway, too.

And don't forget to enter for the Biggie on The Twelfth Day of Christmas!!! Here!!

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

My Article...in real life...

I got published! It's not really a huge deal for anyone but me. I was asked by a school my husband is on the board of to do one of the articles for their bi-monthly column. I was excited to say yes, and this is what came out. I got the electronic version today...and decided to post it here tonight for those who won't get the little local flier mag in their mailbox. It was just cool to see it...I tried to be practical and write something useful...so I hope it blesses someone! :)

AroundAbout Cumming Magazine:

Autism Talk
By Tiffany

Do you want to be the object of good cheer this holiday season? If you have a friend that has a child with special needs, I can let you in on a few secrets (from personal experience!) on how to bless them and give them the gift of peace this year.

Remind your friends that you like them independent of their parenting position. Oftentimes, we get so overrun with the care of our child that we forget to take care of ourselves and that we have a separate identity. Schedule coffee or a low pressure shopping day with your friend or bring outside to them. Bring a movie, fun drink,bright wrapping paper with “real” bows, and old Christmas cards or card stock to make gift labels…the togetherness of doing something fun and cheery can bring a sense of rapport outside of the nitty-gritty of everyday.

There are many holiday parties, shopping, and cooking days left in the year. As a parent of a child with special needs, I know firsthand how difficult it is to get these things done and, even more, how very difficult it is to hire a babysitter. The complexity of finding a babysitter that we trust and is available, is above and beyond simply finding an available teen. We need someone who is equal to and aware of the safety issues our situation necessitates. Most of us would feel comfortable with a “regular” adult, but because we know that you are busy during this season, we will, in all likelihood, refrain from asking you. But we would be thrilled to accept your offer.

Many churches have programs and support already set up, with a special class for those with special needs or simply an available shadow to assist your child in a regular class. If your church does not, now might be the time to set up an “As Needed” program. Having about 10 to 12 people, who would be willing to commit a Sunday of their time once a quarter or 2 or 3 times a year, would be an excellent start. Put a sign-upopportunity in your bulletin, and certainly include the youth. High school and college aged young people will be equal to the task in most situations, as long as you have them in a “shadow” position, they have an idea of what is expected, and who to contact in an emergency. If you have an “On Call” Sunday schedule, and the rotation does not “expect” the same people every week, the response is typically very positive. The ability to worship without the constant pressure of being permanently “on” for my own child is such a respite and a gift that cannot be equaled by anything you could wrap up with a bow.

The ideas shared are not just for this busy holiday season. Simply take out the holiday and add the everyday friendship-you will certainly be helping your friend in more ways than you ever expected.

For more practical ideas, read Same Lake, Different Boat: Coming Alongside People Touched By Disability by Stephanie O. Hubach.

Tuesday, December 7, 2010

The "Biggie" or The 12th Day of Christmas!

Okay, I've been just a tiny bit vague, but I promised a BIGGIE giveaway. On the Twelfth Day of Christmas Band of Angels will give to me, a "Sterling Silver Halo with a Twist": Signature Band of Angels jewelry that celebrates the uniqueness in every child"!...yes, I really said that. I know, my mouth totally fell open, too!!!

It will be the final giveaway...and I will post the official 12th day date as soon as possible!

And, of course, the ways to enter:

1) JUST COMMENT! :)

2) Fan Band of Angels on Facebook and comment here* that you did/have

3) Follow Band of Angels' Blog and comment here* that you did/have

4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have

5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have

6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL

7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment

8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

9) You get a extra entry for every entry on every other day of the 12 Days of Christmas giveaways...SO ENTER THEM ALL!!!

10) If you place an order with Band of Angels and post your order number, you will get five extra entries...(I admit, I am still waiting on the official okay on this one! But go for it for now...you may have to send it to me privately, we'll see...)

11) AND come over here* and post Once(Yes, you will be checked!!) EVERY DAY for a freebie entry...really, just post that you really, Really want it!!!! And you are entered! :)

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the side-bar will link you right there!) on the alert for the day's giveaway or you may email (underwater9800@gmail.com) me your entries. Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and you put who you are and what your entries are IN the email!

Monday, December 6, 2010

The First Day of Christmas Band of Angels Gave to Me

On the First Day of Christmas Band of Angels Gave to Me:

a Hi, I'm Ben book

I decided to start the giveaway with this book...If you want something that makes starting the conversation with your kids about a special needs (and especially Down Syndrome) easy, this is certainly the book!

It is beautiful to look at and powerful because it's focus is that this boy is just the same interests, activities, and hopes as the readers...he just has Down Syndrome...

This is an excellent way to start talking to your kids about how to talk to others with special needs...and how to be their friends! Or if you have a child with Down Syndrome, this is something that might be nice to have on hand when family or friends start asking questions.

If you don't win this, I really recommend adding this to your personal library, or even buying it and donating to your local libray to touch even more lives! It is a kids' book with a surprising impact on your perspective!!


And the ways to enter:

1) JUST COMMENT!! :)

2) Fan Band of Angels on Facebook and comment here* that you did/have

3) Follow Band of Angels' Blog and comment here that you did/have

4) Fan Just a Little Bit Downsy on Facebook and comment here* that you did/have

5) Follow the Just a Little Bit Downsy blog and comment here* that you did/have

6) Paste Band of Angels' Blog Button (bottom of the sidebar) on your blog and comment here* that you did, with your URL

7) Paste a link to this giveaway on your blog or Facebook or somewhere else on the internet and paste that link here* in a comment

8) Paste the Just a Little Bit Downsy Blog Button (top of my sidebar) on your blog and comment here* that you did, with your URL

Good Luck!! Get the word out! I let you know what the Biggie will be tonight...you will get to enter the original 7 ways and then again each day for it...PLUS, add an entry if you order from this incredible company! :)

*It has come to my attention, that Blogger will not allow all identities...so if your particular ID will not allow you to comment on this blog, you may either comment on the Just a Little Bit Downsy's Facebook page (the badge on the sidebar will link you right there!) on the alert for the day's giveaway or you may email me your entries (underwater9800@gmail.com). Make sure that if you email them, that you put which day of Christmas you are entering as the subject line and who you are and your entries IN the email!

Saturday, December 4, 2010

My Love Affair with Band of Angels

There is always a something that you can put your finger on, that started a change of perspective. For me, Band of Angels was one of those.

When Elise was born, as I've said. We were surprised. We went through some of the adjustments super quick. We knew that there would be some changes to our life with the addition of the Bonus Chromosome on 21. I doubt either of us realized how much. But we made a very deliberate choice early on, that she was still our daughter, still our baby, and still should be celebrated, regardless of everyone else's reaction. So we did.

But the information available to us was still fairly limited, and still VERY negative.

The generation of the 70's and 80's brought these kids out of the institutions, to be sure. The information wasn't all negative, there were huge strides in science, and they fought us out into the light and the general population. But there was a distinct lack of celebration...they had spent all their time fighting that it was all facts and little happiness. I believe the end of the 80's and 90's brought the normalcy and some joy. I hope that the 90's and 2000's will bring more hope and joy.

I was a 7th grade Social Studies/inclusion teacher when we had Elise. And the school I worked at was mind-blowingly supportive and positive. I can still never thank them enough. The administration allowed me to do some of my professional development hours in research about Down Syndrome. I wrote up a lot of information about their health, mental expectations, and some educational opportunities...and I soaked in everything I could find...

In the HOURS (weeks...months..) I spent immersed in the internet, I stumbled on to the Band of Angels website. I bought an old calendar for my heart...and then a current one...and then the Common Threads book and bawled my eyes out. It was so beautiful and so celebratory. And it felt like it was the first thing that said that my life was not only going to be okay, but it would be beautiful and joyful...and that I had every reason to be proud of my gorgeous pocket-sized baby....which was the first time that I could truly say that someone other than me didn't think I was delusional, in denial, or emotionally cracked for seeing how pretty my tilt-y eyed baby really was.

The calendars and the Common Threads books featured exquisite pictures done of gorgeous tilt-y eyed children all in black and white and hand tinted...and the Common Threads book took it one step further and included triumphs and POSITIVE statistics on children and people with Down Syndrome. What percentages of people with Downs lived independently, played instruments, held jobs, who won national art contests...and so much more! I wept with the beauty and my soul was bathed in the healing properties of hope.

I will never be able to tell you what this company did for me...Never. I adore them for their products, I adore them for their new parent packages, and I love them for the joy they have steeped their products in.

When I started this blog, my hope was to put a little more of that joy and celebration of day to day out there for others. I put some of the struggles out there, too, but not to depress...rather to allow others to see that all my celebration of my sweet girl is rooted in normal parent struggles and to understand that the successes are that much more a true triumph! The harder the battle the more amazing the victory!

A month or so into it, I decided that I was going to do a giveaway for Thanksgiving or Christmas. I would do a calendar, I thought. Just in time for the New Year. Perfect. Then I decided to ask Band of Angels if they'd like to be involved and see if they'd "up the ante" maybe sweeten it with a Common Threads book or a set of cards or something. I heard back from Cynthia Kidder herself, saying how she enjoyed the blog and they totally wanted to be involved. My heart sky-rocketed. I figured that my email would go to someone who handled "crazy lady" requests...but I heard from the actual lady who unknowingly put emotional band aids on my heart 8 years ago and handed me hope, and on a silver platter to boot.

We've gone back and forth a bit...and I now have the Band of Angels badge on my sidebar...I am wearing it so proudly, I am surprised that you can't see the big grin on my face every time I so much as LOOK in the direction of my computer!! AND they have decided to do a 12 Days of Christmas Giveaway! Like TWELVE items!!!! My little mind is swimming just writing that!!

Wow.

Okay. SO!! Here is the deal. The first thing I am going to do here is up your anticipation a little bit....just so I don't feel alone....because I am high-as-a-kite excited!! Each day of TWELVE days there will be a giveaway. I *think* I am going to keep it on week days so all of your Christmas parties, holiday travels, and Christmas shopping doesn't keep you from getting a chance at these goodies...And you will have a chance at a Biggie Win at the end...I will tell you more of the details on Monday along with the FIRST giveaway!

But today (and until I post the first giveaway) you get a chance for an extra entry to a giveaway. It's simple. All you have to do is go to http://www.bandofangels.com/ and comment here or on the Facebook page of this blog and tell what you HOPE is in the 12 Days of Christmas Giveaway Stash!!! If you are right, then I will put you in an extra entry for that particular giveaway!! Cool, huh??? So, go dream shop, and come back here or on Facebook and tell me what you hope is on that List!!!

Go, Go, GO!!! :)

Thursday, December 2, 2010

The 12 Days of Christmas is COMING!!!

I am ironing out some logistics, but there will be a mack daddy giveaway coming soon! I have been working with Cynthia Kidder from my beloved Band of Angels. This will be totally AMAZING!!!! I can hardly stand it!!!!

To kick it off I will tell you of my love affair with this amazing company...check in soon, we'll have more details!! :)

Wednesday, December 1, 2010

December Surprises!! EVERYONE WELCOME!!

For December the project involves EVERYONE!!! You can participate once or daily.

What are your biggest Christmas Surprises? No presents! Answer as a comment here or on the blog's Facebook Wall!

I'll go first.

I'm surprised how much I tear up over Christmas Carols and traditions I said I hated when I was a kid! :)

Tuesday, November 30, 2010

Thankful That We Are Not Alone - Guest #18

Please let me introduce my final guest for the Thankful That We Are Not Alone project. Guest #18 is Heather, a friend from church. Her daughter Gabi is the star of one of my 31 for 21 entries. She is also one of the reasons God nudged me into doing this blog. Enjoy!

"Before my first visit to the doctor with all three of my pregnancies I worried about miscarriage. I never worried about anything being "wrong" with the baby. For some reason I had the "that would never happen to me" mindset. I didn't think I was the kind of person that could have a special needs child. Apparently, God knows me better than I know myself.

At my first appointment with my third child they did an ultrasound and noticed that there was a thickness in the nuchal fold. When I heard the words "Down Syndrome" I couldn't believe what I was hearing. Again I thought to myself "that would never happen to me." I was sent to a high risk doctor and given a 2% chance. My mind was at ease thinking the odds were in my favor. Then I remembered something. The week I had found out I was pregnant I was working at VBS. One morning we were in the music room and a little girl in front of me turned around and wrapped her arms around me, looked up at me and smiled. I remember hugging her back and smiling too. I believe that smile stayed for a while. That little girl was Tiffany's daughter Elise. The moment I remembered that happening I felt a chill and that was the moment I realized that 2% chance was 100%. I realized that she knew before I did, before I even knew I was pregnant. I will never forget Elise's hug. I will also never forget Tiffany who was a stranger to me at the time but still was so warm and caring once my baby was born. She has gotten me through some rough patches and made me realize I wasn't alone.

My baby girl, Gabi is now almost 10 months old. She is the sweetest baby. She is such a good baby. She has the best smile. When she smiles, her whole face smiles, starting with her eyes. Her smile is contagious. She is doing very well. Her therapists go on about how strong she is and her doctors are amazed at how vocal she is. Good thing I named her Gabi! ;)

I don't know what the future will bring. I know this is the easy part and the harder part is yet to come. I also know my rough patches are far from over. I still have my moments and I'm sure I always will. But I know it will all be worth it, just for Gabi's smiles."

Monday, November 29, 2010

Thankful That We Are Not Alone - Guest # 17

I am In Love with the blog Life.Rearranged. Jeannett almost always has something I can relate to or something challenging and timely. If you have checked out NONE of the blogs I've linked...you MUST look up this one. I am so proud to have her on!!


"Tiffany asked me to guest post for her...the topic: anything I wanted.

How's that for freedom?! :)

I drafted posts in my head, mulled them over, and the one I kept coming back to was the idea of how having a child with different needs is so much more than the physical therapy appointments, the doctor visits, the special exercises, the daily medicines...in fact, most times, when I think of my sweet JillyBean, those are the LAST things that come to mind.

The thought that comes to mind first and foremost is always how stinking lucky I am.

Crazy, right?
Don't get me wrong...I am no super mom. Nor am I a Pollyanna who sees everything through rose colored glasses.

We have bad days. I get overwhelmed. And sometimes, if I'm honest, I get a little jealous. Wondering what it would be like to not have all the extras that come along with my little blonde fairy.



But more than the bad days...I find myself thanking God from the highest mountaintops for delivering to me my sweet Jilly.

Yes, I am lucky because it could be worse.

Yes, I am lucky because she is progressing well.

Yes, I am lucky because there are others worse off.

But that's not why I consider myself lucky.

I consider myself lucky because Jill saved me from myself.

Jill has taught me to see the world in an utterly and completely different way.

I love more.

I am more compassionate.

I am a better friend.

My heart has been broken into a million pieces...

a painful process to be sure......

almost unbearable somedays...

but when it was put back together...

it was made into a fuller version of its former self.

I still have a long way to go. I will always be a work in progress.
I don't know that God will ever be done with me.

But as only other parents of special needs children truly understand:

We are the lucky ones."

Friday, November 26, 2010

Thankful That We Are Not Alone - Guest #16

This lovely lady requested to be involved in the Thanksgiving Project and after reading her blog, I was ever so pleased to say yes. I highly recommend running over to Garden of My Heart and seeing what else the talented Melissa has to say!

Please welcome Melissa:

"I stumbled upon this blog and this Thankful That We Are Not Alone Project when one of the entries was discussed elsewhere on the internet. I was surprised at the negative reaction and it really had me thinking about the authenticity, truth, and the Down Syndrome community.

In the short 6 months since I've had my daughter, I have struggled with how best to share our story. On the one hand, I feel pressure to show how normal my life has been despite Down Syndrome. Our kiddos have a hard enough time with acceptance in this world due to the fears and misinformation out there about Down Syndrome, and I genuinely feel sometimes, that if I say one negative word about it, I only perpetuate the stereotypes and make things harder for my daughter. On the other hand, I feel that it is not genuine to constantly spout rainbows and butterflies about my life. I feel that it somehow lessens my experience and that of others to leave out some of the difficult aspects of this diagnosis.

I wonder how many mommas out there feel the way I do? I know part of this is a function of my newness to it all. I have yet to fully develop my voice and I have yet to fully develop any definite feeling about what Down Syndrome means to me as a mom or even just a human being. All I know for sure is I love my daughter through and through.

I have come to realize that authenticity is the greatest thing I can bring to the table, both for my daughter and the Down Syndrome community. With any diagnosis, with any kind of life there will be peaks and valleys. The lessons we learn in the valleys make the peaks that much more amazing. To be honest about the valleys is to recognize them for what they are, work through them, and come out on the other side a stronger momma, person, and advocate.

To hide those valleys for fear of painting a negative image of Down Syndrome is counterproductive. They are nothing to be ashamed of or the shy away from. They are just are. Authenticity and honesty in this respect, I feel, brings the Down Syndrome community closer together. We can learn from each other in our stories of acceptance, or lack of acceptance, in our stories of outright joy over our children's accomplishments or despair at their struggles. All voices and all stories are important.

All stories need to be accepted for what they are - glimpses into someone's life, an opportunity to learn from that experience, a chance to celebrate or lift someone up on a difficult day. Judgement, need not apply. We may not agree with someone's approach and we may even be hurt by the words they have chosen but we need to allow room for authentic voice and the truth in our stories.

In that spirit of authenticity, I want to share where I am today. This is how I truly feel, no filter for how someone may take it.

I love my daughter. At 6 months old, I swear she already has a sense of humor. She knows her momma and daddy. I love that I know exactly what will make her smile. I love that I know the difference between her various coos, babbles, and cries. She has the biggest blue eyes and, surprisingly, beautiful orange hair. She handled her open heart surgery like a champion and can do tummy time like nobody's business. I have days that are all rainbows and sunshine. I have days when the words "Down Syndrome" don't leave my lips. I have days I laugh so hard my face aches the next day and my heart feels like it may very well burst from joy at this precious life in my hands.

But...I struggle with the fact that she still has an NG tube. I am sad that my child started speech and physical therapies at just 6 weeks old. I worry about her future and I selfishly worry about mine. I have times when I despair. I have days when I am mad at Down Syndrome, sad at Down Syndrome, frustrated with Down Syndrome. I accept that my daughter has Down Syndrome, but that doesn't mean that I need to like it.

My biggest struggle right now is the concept of "they" - anytime I read or hear anything along the lines of "people with Down Syndrome are so nice"(sweet lovable, etc) I feel a twinge of sadness. You can't say that about any other group of people without being slammed for stereotyping. Imagine walking up to someone and saying, "My cousin is white! All white people are so nice!" It just wouldn't fly. Yet it appears to be completely acceptable within and about the Down Syndrome community. It is hard to think that my daughter's personality is already somewhat predetermined, or at least if she falls into any of these stereotypes it will not be attributed to her individuality or my parenting, but that she has this extra chromosome so her kindness must be some foregone conclusion.

So that, in a nutshell, is where I am. I hope that someone reads this blog entry and understands exactly how I feel. I hope that someone reads it and disagrees completely, but takes something from this point of view.

In the future, I look forward to reading more and more about life with Down Syndrome - the good and the bad. I look forward to adding my voice to the mix and I hope it brings comfort to at least one person to know that they are not alone in their thoughts and feelings. I am thankful that I am not alone in this."

Wednesday, November 24, 2010

Thankful That We Are Not Alone - Guest #15

This is a bloggy friend of mine. I have enjoyed her blog for a while now and have gotten to meet her on Facebook, too. We've been chatting back and forth for a while and just recently I discovered that she wrote a short story submission for Gifts. Which I adore and often recommend to new parents. I felt like I had met a celebrity all of a sudden. I got all aflutter... :)

Please welcome the only "celebrity" I know, Deborah Minner of Sunflower Stories.

"Goodland, Kansas, population 4,948, is the county seat of Sherman County in Northwestern Kansas. The town is just 4.4 square miles big. It sits just 17 miles from the Colorado border, but is 176 miles from Denver, the nearest major city. The closest major city on the Kansas side is Hays, 212 miles away. Goodland is known for it's vast open fields of sunflowers and wheat.

In a small rural community such as this, it's very easy to feel alone. The nights are quiet, the days pass slowly. Socializing is most likely to occur in the isles of Wal-mart. Everyone knows you, knows who you dated in high school, where you went to college, and which bank you use. The same doctor delivered most of your classmates and if you have a cough, he'll whip up a special syrup for you to take. "Newcomers" are defined as someone who moved into the city in the past 15 years, versus being born there. And it takes years to branch out past relatives as friends when you are a newcomer.

When my husband, Doug, and I decided to move to Goodland, we knew we'd go through an adjustment period. We were so used to our busy social life in the town where we graduated from college. Our life had been so hectic and stressful, we relished the idea of a calmer way of life. We comfortably made the transition, learning to eat most meals at home, instead of at our favorite restaurants, watching videos on Friday night instead of going to see live bands. Enjoying family gatherings with his parents, watching football or basketball together while our baby crawled around the house. We slowly started meeting people through golfing at the country club, and participating in MOPs. This was way before the days of Facebook and high speed internet. W rarely used the old lap top computer at home with it's painfully slow dial up internet connection. Occasional trips back east to visit my parents gave us time to catch up with friends.

So when our second son, Sean, was born and later diagnosed with Down Syndrome, our support network was scattered and loose. Of course we had the love and support of our families, but we searched for the strength from others like us. Other parents of children with Down Syndrome or other disabilities. Since our local hospital wasn't able to meet Sean's medical needs, we went to Denver to see specialists. The Mile High Down Syndrome Society offers great resources to Colorado families, but since we'd be returning to Kansas, they didn't have information for us. We got a few pieces of paper printed off and stapled together telling us medical facts about Down Syndrome and included a list of online resources to read.

When we returned home and connected with our family doctor, he referred us to the Early Education Service Center that would offer therapy for Sean until he was old enough to go to school. One of the first things we asked them to do was to connect us with another family. Unfortunately, we learned that he was the only person under 18 (that's as old as they had service information for) in the entire northwest area of Kansas that had Down Syndrome. Their service covers 13 counties, a total of 12,000 square miles, and Sean was the only person with Down Syndrome in that area at the time of his birth.

Talk about feeling alone.

We were sad, scared, uncertain, uneducated about Down Syndrome and we felt like the only people we'd ever known in this situation. We grasped at straws to think of who else might offer us advice. I had a vague memory of a person I once did a committee work with that had a daughter with Down Syndrome, so I did track him down and email him a couple of times. My dad surprised me by telling me that his first wife has twin boys one of whom has Down Syndrome from a prior marriage. and that he had lived with them during their marriage. I'd always known of his first marriage, and the twins, but had never realized one had Down Syndrome. I pulled out the old 35 mm photos from the late 60's and closely looked at the faces of two six year old boys. Yes, I could see it now. They looked to similar, but one was slightly different.

Yet we still had no one close to us, no one raising their child the same age as us, no one to ask questions that ran through our minds and we were afraid to speak aloud.

We pulled out the pages from the Denver hospital and looked at the resource list again. We wanted to find people, not facts. We wanted stories and photos, not statistics and charts. One caught my eye: http://www.downsyn.com/ a parent-to-parent support website, it said. I plugged in the old lap top and slowly watched the pages load. The peach colored backdrop, adorned with cherubs, appeared.

I.found.home.

Any and every question I could think of was asked and answered. Photos, videos, stories, resources, reviews, opinions, SUPPORT. Warm open arms.

Suddenly, we were no longer alone and I was so thankful.

I leaned on downsyn.com for support so much of Sean's first year of life. It was the lifeline we needed in addition to the love and support we had from our families and friends.

When Sean was 12 months old, we finally saw another person with Down Syndrome in person. We had gone to a nearby small town to visit their fairgrounds. While watching some horse riders performing various cowboy competitions, a family with a teenage daughter with Down Syndrome walked past us. They stopped for a few minutes just rows away to watch the horses. Doug and I no longer watched what happened in the arena, but instead intently observed the family in front of us. We stretched to hear them, to hear her talk, to see what they said, to wonder what their life was like. A glimpse into our future? How desperately I wanted them to turn around, look into Sean's eyes and see that he was a part of the T21 club! Instead, they moved along and as much as I longed to chase after them, I held back

A few weeks later we went to the Mile High Buddy Walk and completely surrounded ourselves with families like ours. The experience was overwhelmingly emotional and moving. Months later, we moved to our current city and joined a Down Syndrome support group that meets just an hour away. We quickly met other families and built in person support.

No matter where you are and what stage of acceptance you are at, there is always help out there. There is comfort in those connections. I hope each parent that feels alone can make a connection.

Tuesday, November 23, 2010

Thankful That We Are Not Alone - Guest #14

I have been begging for guest bloggers since the blog's debut back in September. Today's guest volunteered way back then! I have been looking forward to hearing her story ever since, and am pleased to introduce Marianne.

"Hello, Readers of Superdownsy!
This is Marianne. I am a hearing impaired adult. I was born with the hearing loss that I have. I grew up in a fairly normal home with a mom and a dad and do not have any siblings.

I am thankful to have my hearing loss because I know God made me special this way. However, growing up in a time era of no technology to help me communicate such as email, texting, even blog posting or Facebook, was difficult.
I was bullied in elementary school and middle school and ended up in a lot of fist fights. The reason is because children at that age do not quite understand what it is like to be in a hearing impaired person's shoes, a Down Syndrome person's shoes, a mito person's shoes, a cerebral palsy person's shoes. In my case, I believe it was easier for them to pick on me because they knew I could not hear them. Kids would ask me what country I was from because of my "accent". They would ask me the same question repeatedly. The bus was equally as awful. I stopped riding the bus late in my 6th grade year. My sweet late grandmother Baba picked me up every single day of my school career until I got my license. I'm forever thankful to her for that. She told me she believed I could hear and always knew I would be successful in whatever God chose for me to do - in this case, be a mom and a wife.
Let me explain how my hearing works: I have one hearing aid, that I wear in my left ear, that helps me to hear about normal. My other ear will not benefit from a hearing aid. I have to look directly at someone's mouth to read their lips. I am dependent on lip reading. I can hear roughly normal sound levels, however, I cannot decipher sounds without looking directly at the person. I cannot decipher the differences between the sirens - fire truck, police cars, ambulances. They are all the same to me. I also cannot hear high pitches, but I know it is there because it cuts off all other sounds and hurts my ears. When I talk on the phone, I primarily use speakerphone and my best friend from middle school and high school days helped me come up with a "code" to speak on the phone with my family and closest friends. I have to rely on yes and no questions to have a decent conversation with my husband, father, mother, and some certain friends that are aware of the "code". When I ask a question, if the answer is yes, they will say "ok" in two clear syllables. If the answer is no, they will drag out the "no" in one long syllable. If they don't know, they will say "I don't know" in three clear syllables. This is the norm of my everyday phone conversations and I am eternally grateful to be able to have those conversations!
I am forever grateful to my God for living in today's technology generation, allowing me to fully converse, interact and socialize with my family and friends without being felt left out at all. He is awesome!
Now, backing up to my grade school experiences: I was in three different elementary schools. It was my parents' attempt to get me the best education possible for my hearing impairment situation. The first one was Atlanta Speech School, where I started when I was 2 or 3 and that is where I learned to speak using my fingers on other people's throats and reading their lips. Sadly, they did not advance to the teaching me to listen without looking. I'm not quite sure why, but I am not going to question it now. I've gotten by without that and there is a reason for that. So I don't hear all the ugliness around me, I suppose. The second elementary school was out of my district about 30 minutes away at the bottom of Cobb county, where I am from. It was a school with a well renown special education department with teachers specializing in hearing impaired and deaf students. I learned sign language at this school, but do not use it primarily at all. I only use it when conversing with other deaf students that are dependent on it. The third elementary school was in my district. I landed there in 4th grade and that is where the trouble began with the social aspects and bullying. I was mainstreamed into the classroom at that point and had a difficult time adjusting. The students also had difficulties adjusting to a hearing impaired student and didn't know how to interact with me. So I started fighting them. I was sent to the principal's office and was spanked with a wood paddle back then. I was not the easiest child to raise and I definitely learned my lessons.
My experience in middle school was one to remember. In my 6th grade year, I was suspended from school for getting into fights with boys and girls -fist fights- because they would come up and aggravate me, provoke me, and ask me questions regarding my hearing loss in disrespectful ways, pointing fingers at me, and it was all very upsetting. As I got older, the fights lessened. My last fight was in 7th grade right before my birthday. My mother took all my gifts away and returned them to the store when I was suspended. That suspension is the one that woke me up and forced me to change.
Since then, I have been on a mission to be happy about my hearing loss, to thrive in it, to show others that it can be possible to live normally, albeit the hearing loss challenges. So through the remainder of 7th grade and 8th grade, my closest friends could see the change in me and were very encouraging. I also had a fabulous special education teacher named Marie Sanders (Kendall, now) all through middle and high school. She is a Christian lady who stuck by me and encouraged me even through my fights.
My high school years were some of the best. It is where I found God and changed my life even more for the good!! I had a good friend who chose to write a paper in an English class about me. The title was "Of Unheard Courage". It was a paper that made me cry. I still have the original copy printed on the old fashioned visible dotted ink on perforated paper. She is a dear friend, special to me because she saw me for who I am, not for what I am not. She is Catholic and saw my love for God and understood it, even though there are differences. She realized there is one God and we both serve him.
Today, my advice for all those parents and children dealing with special needs: Have your children approach them the same way they would any child. Ask them gently, do you want to play with me? And offer to help if it seems that they are having difficulty, maybe move obstacles out of their way, maybe help communicate between them and other children. The most important thing I would offer as advice: do not ignore them, talk about them behind their back, instead, ask their parents how to communicate with their child. They will be grateful that your child is taking a step towards understanding their child and may make a lifelong friend at that.
I am grateful to know Elise and love seeing her smile at school when I am in the building. I am grateful to take photo graphical memories of her and her fabulous teachers. I am also grateful to know Megan, another child at the same school, who is my neighbor. I am grateful to know her mom and to be able to donate my time to help with her annual fundraiser, Music for Megan, which has now concluded. Elise has Down Syndrome, but she is one of the sweetest girls I have ever met. Elise has a heart of gold! She always gives me a hug when I see her at school. Megan has Mitochondrial Disease and she is a super sweet, active little girl to always yearns to be on the go. I saw her at the Fun Run recently and when taking a picture with her teacher and by herself, she always gave me the the "peace" sign - the "V" with her hand. She is a peaceful little girl with a huge heart and a loving family who has worked to so hard to raise money to cure this disease and give Megan the best life possible.
I thank God for allowing me to know these children and I hope to get to know more and help capture memories for those children in the future. I am also thankful for my hearing impairment. I feel it is God's way of sharing me with everyone in a different way, and in an encouraging way. It will not stop me from trying everything I want to try, to attain my ultimate goal in life, to be successful in anything I choose to that God allows me as part of his eternal will.
God bless you and thank you for reading this!! Please email me at teamnash4@gmail.com if you have any further questions regarding my hearing impairment, I will be glad to try to answer them to the best of my abilities.
Much Love and Blessings,
Marianne"

Monday, November 22, 2010

Thankful That We Are Not Alone - Guest # 13

My guest posters were hunted down by various means. Some volunteered, some blog themselves, some I actively pursued, some I pestered, and some I came out of left field and probably freaked out... Today's guest is my husband's fraternity brother. While he is a friend of mine on Facebook, we have never been super close. So when I point blank asked him to consider doing a guest post, it probably unnerved him. But he graciously accepted my request, confessing that this is his virgin blog post.

Please welcome Rudy. This is everything I expected it would be when I asked!

"I don't know when I realized that my family situation was different than most, probably because my parents were as involved as anyone else's parents. Actually, truth be told, they were probably more involved than most of my friends' parents. My dad coached my basketball team all the way through junior high, my tee ball teams, and my flag football teams. They actually still come to my games today, and I'm the coach now. I had friends over night, had birthday parties, went on vacation, went to private school, and had everything that I could want growing up.

You're probably saying, sounds like any other family, so why is your family situation different? It wasn't any different to me, it is the way it is. You see my parents are deaf. Yes, that's right, they can't hear. My mom is great at reading lips and wears a hearing aid. My dad, can't hear a thing, but that is the only thing different about them.

I am always amazed at the questions that people ask me when they find out my parents were deaf. Wow? Really? I never would have guessed...Like my parents not being able to hear was supposed to leave a visible scar for everyone to see. Some of the most common comments include, I bet your house is really quiet (actually it was very loud, you see they didn't know when they were being loud), How did you learn to talk (umm..the same way you did from other people. I wasn't shut out from TV, radio, or other people who weren't deaf).

People always assumed that my childhood was abnormal due to the fact that my parents were deaf, but actually it was normal to me and all I had ever known. I sometimes like to compare it to a foreign speaking family that moves to the United States. Nothing really is different, there is just a communication barrier that has to be overcome. I do have to give my parents "props" for not "leaning" on me as much as other deaf parents to interpret. That was the only inconvenience to me, or so I thought. I would routinely help my parents on the phone, at the doctor's office, or just out with them daily. I would think to myself, this isn't fair. But in reality, I was developing those skills that I now realize are necessary for survival. Like if you don't know, ASK, it's okay.

I wouldn't trade these experiences for anything. Growing up in my house with that situation was a blessing and a curse, humorous and sad, independent and cooperative. It taught me to not let your situation determine who you will be. You've got to play the hand you are dealt, turn lemons into lemonade, and don't ever be afraid to be yourself!

As for being a parent, it taught me that I shouldn't make excuses to not be involved in my child's life and tolerance for persons different who are different from ourselves. We can learn many things from people who live life differently than we do. I wasn't overly concerned with possible "defects" that might occur during pregnancy/birth. I knew that you can't stop and worry about things you don't have any control over, and to handle the situations as they come along as best you can. We've got to love each other no matter what.

Sunday, November 21, 2010

Thankful That We Are Not Alone - Guest #12

When we first moved to Georgia, I got involved with a Down Syndrome Play group. I had to drive and drive to get to it, and with all of Elise's health problems, we missed SO many of the dates. As our babies grew up and got into the school system, the playgroup went into a funny limbo...we still have the "loop" where if anybody has any "Am I crazy?" questions, or requests for specialists, or just parenting advice...we send to the group and everyone responds with anything helpful. I cannot tell you what a blessing this has been.
So a week or so into this Thanksgiving project, I realized that I still had this incredible group and that there HAD to be a writer or two in there...I was not disappointed.
Please welcome the incredibly gifted, Ricci.
"I Surrender All

I thought I was living a surrendered life, until I actually had to surrender it.


Wednesday, June 27, 2007-
"I've been craving so many sweets lately," I hear myself say as I pack my plate for a second time at my weekly Bible study. The words penetrate the air around me and I immediately think, "Could I be pregnant?" No, certainly not, we are taking precautions, I silently assure myself.

The lingering thought pursues until I pull into the pharmacy. As I stare at the pregnancy tests, I think, I never thought I'd be buying one of these again. When I get home, I wave to my family and rush into the bathroom. Each time I have taken this life changing test, I see the results instantly. This time is not different. I gasp! There it is; a second line, a new life, my fourth child. Holding the test and my breath, I walk outside to find my husband and three kids catching lightening bugs. My kids dance around me grasping into the sweet summer air for the twinkling lights as I walk over to my husband

"How was your study?" he asks. Without saying a word, I simply hold up the answer.

Tuesday, July 31, 2007~
Still in a state of disbelief, I sit in my doctor's waiting room. My mind wanders to the birth of my first child, a beautiful girl, Remington Lark.

I relive the moment that she opens her eyes and looks at me for the first time. I trace the outline of her big, plump lips, her pink chubby cheeks, and her tiny pointed ears. Tiny pointed ears! I have given birth to a fairy. Wonder envelopes me like a warm wind. "Thank you, Lord" I whisper. A still small voice whispers back "Welcome to the magical journey of motherhood."

Twenty two months later, Savyn Lindy, another baby girl, joins the family. With a name as unique as she is, this world is now a better place. Her heart is as big as her smile. She radiates, captivates, and frustrates, in her own savvy way!

When I find out that I'm pregnant with my third child, I make it clear, I want a boy! As soon as he is born, my husband shouts, "It's a boy!" I feel instant joy as I reach for my first son, Brandon Michael. He is here, and my family is complete.

There is something so pure, so enchanting about the love of a child. So why do I feel so conflicted about having another one? Before I can rationalize this feeling, the nurse opens the door.

"Ricci?" She calls out and suddenly I'm back to the here and now. As I wait for the doctor in my "oh so chic" paper robe, the thoughts flood in. How is another baby going to fit into our lives? I have just started my own business, when will I have time for another baby? I've had three children in five years, nursing each one for a year. Wait a minute, the math doesn't even add up.

Interrupting my thoughts, the doctor knocks and opens the door. After my exam, he says, "You seem to be about 7-8 weeks along, but I'd like for you to schedule an ultrasound."

"Why? Is there something wrong?" I ask.

"No it's just to get an accurate due date," he assures me. I nod, all the while thinking, Can you just check again? Are you absolutely sure I am pregnant?

I turn to leave and the nurse hands me the complimentary black nylon baby bag. "Congratulations!" she beams. "I already have three of these, I think, I don't need another one. Bothered and bewildered, I make my way home. I am officially a mother of four.

Monday, August 6, 2007-
Today, I turn thirty-seven and I am having another baby. Feelings of welcome anticipation are slowly replacing the shock and disbelief I've been carrying around with me. I make it a daily habit to surrender my life to God's will, so I know this baby is His plan for our life. It has to be His idea, because it certainly isn't mine.

Later in the day, this email finds me, "God doesn't choose the qualified, He qualifies the chosen." I write it down and stare at the words. I didn't decide to have another child, God chose me to. This truth settles over me and the beginning feelings of excitement emerge.

One day later, I wake up one year older and centuries wiser.

Tuesday, August 14, 2007-
The weight has lifted, the fog has cleared and I breeze into the doctor's office for my first ultrasound. The technician and I make small talk as she glides the handle over my stomach. She tells me I am measuring 12 weeks and 4 days. As she continues, the look on her face begins to change.
"Are you going to have the NT testing?" she casually asks. She explains that all women over thirty-five are offered a lest that measures the fluid at the base of the babies' neck to help determine the probability of a chromosomal abnormality.

"I guess I'll have it done," I answer. "Why, do you see something?" I could tell by her hesitation that she does.

At my prompting, she admits, "I am a little concerned with the neck."

"A little concerned with the neck?" I shriek. She tried to assure me that everything is probably fine.

Probably fine, and concerned with the neck are words that you do not want to hear at an ultrasound.

Monday, August 20, 2007-
One week after the neck comment, I have another ultrasound. I search the nurse's face for any sign that something is wrong. I turn to look at the screen and see my baby waving.

My eyes well up, I blink and think, stop this, don't cry. Everything is probably fine, I assure myself, again. I don't even notice that the doctor has come in and is standing by my bed.
He introduces himself and tells me, "It's the nuchal translucency fluid that we are measuring." I try to concentrate on what he is saying, but my eyes dart from him to the tiny image on the screen.

Finally he says, "We like to see the fluid levels under two, and your baby is measuring at five. This I hear.
"What does that mean?" I ask. I'm not even sure what he says, but I can read it in their faces, something is wrong with my baby. He tells me about CVS testing where he can withdraw some of the fluid from the placenta and check for any chromosomal abnormalities.

I want to scream at him, I'm not even supposed to be pregnant! I ask to call my husband and as soon as I hear his voice, the emotions start pouring out. "Something is wrong with our baby," I whimper. In between sobs, I tell him that the fluid levels are too high and the doctor is suggesting a CVS test. My husband tries to calm me and suggests we both come in to meet with the doctor.

While I am attempting to schedule a time for the next day, the nurse hands me an ultrasound picture. I glance down at the small figure waving. There are two little words printed on it...Hi, Mom. I can't hold back the tears.

"Come in around 11:00 am." the receptionist tells me. I glance in her eyes and see the first (of what would become so many) sympathetic look.

Everything looks the the same, but somehow my world is different. As I drove home, my heart is racing and the what if's begin to consume me. Suddenly, something catches my eye. A big hawk swoops across the front of my car and lands in a nearby tree.

I slow down to see him and a scripture rises up to save me.

"Be still and know that I am God." Psalm 46:10 (NIV)

I pull over and repeat the words aloud,"Be still and know that I am God." I lower my head and the small voice whispers, "Be still, my daughter, and know that I am here." I glance up at the hawk, sitting so majestically, so still, in the top of the tree. I breathe. And then, I smile. God, the hawk, and I have won the first battle.

Tuesday, August 21, 2007-
My husband and I drive to meet with the doctor and I can only stare out the window. It's a hot, sticky day and my mood is as damp as the air. Sitting in the waiting room, I casually flip through the Atlanta Home Magazine trying to keep my mind off the upcoming conversation. I picture myself living in this cool, downtown loft when the nurse opens the door.

She nods our way, "The doctor will see you now." Another nurse calling me back to reality. She guides us into a small room with one round table and three chairs. The doctor comes in and shuts the door. He motions for us to sit down and starts to talk about our baby. I feel nauseous. After hearing the words like lethal chromosomal abnormality we decide to have the CVS testing. The procedure itself is not that bad. And it's not that good either.

WE are told the preliminary results could come back in 48 hours and the doctor would give us a call. On the way home, I don't see any hawks, I don't hear any little voice and begin to feel defeated.

Over the next couple of days, I Google words like cystic hygroma and increased nuchal and translucency fluid. I read about trisomy 13, 18, and 21 (which is the technical name for Down Syndrome). I go to message boards and read stories about women, waiting like me, to find out the results of some procedure.

Tuesday, August 23, 2007-
After what seems like two years instead of two days, the nurse calls.

"Unfortunately, there aren't enough cells to get the rapid results so it will take a couple of weeks before we know anything."
"I'm so sorry," she says, and I can hear the sympathy smile through the phone. After I hang up, I wonder aloud, "What are you preparing me for, Lord, and why do you need more time?"

The next two weeks are surreal. It is also a time of pure magic. God uses this time to assure me that His love and His plans are unshakable, undeniable, and unbelievable. During the waiting time, I start reading a book by Beth Moore. She writes about a little girl from her church that has Down Syndrome. I have also stared reading Beth's Bible study based on the life of King David. On the first page, the following words are printed just for me,

"Do no look at the appearance or height. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." I Samuel 16:7 (NIV)

I notice children in the store, at the park, and in restaurants, who have Down Syndrome. One morning as I am looking through books, a scripture falls out and lands at my feet. It's Matthew 11:25 (NIV).

"At that time Jesus said, I praise you Father, Lord of heaven and earth, because you have hidden these things from the wise and the learned, and revealed them to little children."

Another scripture immediately pops into my mind.

"I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." Luke 18:17 (NIV)

I remember reading an article referring to people with Down Syndrome as "forever child-like." Not such a bad thing, I decide. Children believe with all their hearts and love with all their souls.

My three children bring wonder, radiance, and joy into my life over and over again. Wonder, Radiance, and Joy. These three words remind me of God. And these three words remind me of my children. As I kiss each one of them goodnight, I say a prayer of thanks. I continue to wait for the call. But I truly know that I am not waiting alone.

Thursday, September 6, 2007-
The phone rings a little after 5pm.

"We received your test results," the doctor says. I breathe in as he continues, "Your baby is positive for Trisomy 21." I want to say that I already know and it's okay. But instead, I exhale.

The doctor continues and my thoughts settle on one simple question.

"Do you the sex of the baby?"

"Yes," he pauses,"the baby is female."

As I hang up the phone, I can't help but smile. It's a girl.

Later that night, I think of all the signs God sent me in preparation for this baby. As I'm about to go to sleep, I remember something my Aunt Carolyn told me a few days before.

"I feel that the Lord spoke to me and said that the baby will be fine. Just have hope." HOPE.

Again, a scripture pops into my mind. And now these three remain: Faith, Hope, and Love. But the greatest of these is love. I Corinthians 13:13 (NIV)

This will be her name, I decide. Love. Bree Love. I run my hands over my stomach and allow myself, for the first time, to connect with this beautiful baby growing within me. Welcome, my Bree Love," I whisper, "I love you."

Friday, September 7, 2007-
I'm relaxing in my sunroom when my eyes fall on a small plate hanging on the wall. It's a picture of a little girl with angel wings. I gaze at her and think about my new baby.

My angel baby, I say aloud as I rub my stomach. I take the plate off the wall and sit in my rocking chair. I turn the plate over and read, for the first time, the inscription on the back. "Angel of Hope" My aunt's words rush over me, "Just have hope." I smile from the inside, I'm having hope.

Sunday, September 9, 2007-
Before I am out of bed, I come up with every reason not to go to church. Practically everyone know that we are expecting, but no one knows our recent diagnosis. I want some alone time, to think, to read, to walk, to laugh, to cry, to pray. The small voice whispers, Go to church, you need to go to church. Reluctantly, I get in the shower.

Before the sermon begins, our pastor introduces someone and she walks to the stage. She talks about becoming a member and the reasons why she feels our church is so special.

"You see, our youngest daughter has Down Syndrome." She tells of many blessings her daughter has brought into her life. My tear ducts explode.

Is there a spotlight on my head, I wonder? We just found out so I know no one else knows. "I know," the voice whispers and once again God is talking right to me. And I am listening.

On the ride home, I notice my friend, the hawk, circling high in the sky. I watch the graceful movements, close my eyes, and fly with it.

The rest of my pregnancy is rather uneventful. I have monthly ultra sounds to check for heart problems, blockages, proper growth, etc. Each visit brings good news and she is developing great. At one of my visits, the doctor shares some startling statistics with me.

"Ninety percent of women who receive a prenatal diagnosis of Down Syndrome choose to terminate." he says. I stare back at him, trying to wrap my mind around this fact.

"Ninety percent?" I ask. "As in 90?"

"Yes," he answers, "Ninety percent."

This number stuns me, saddens me, and haunts me. Over the next several months, I read books like Expecting Adam, by Martha Beck, Angel Unaware, by Dale Evans Rogers, and Angel Behind the Rocking Chair, by Pam Vredevelt.

These women all tell of incredible experiences. Words like joy, peaceful, kind, generous, and loving are used to describe their children. A calling is put on my heart to share my story with the world. I'm not filled with fear, anxiety, or doubt, but rather with faith, hope, and love. And, when the what-ifs begin. And, when the what-ifs bgin to circle in my mind, I simply close my eyes and take flight. I rise above the fear and gracefully glide through it.
Saturday, February 2, 2008-
Entering my ninth month, I re-read Laurie Beth Jones' brilliant book, The Four Elements of Success.
She writes, "I believe that the four four elements are fascinating reflections of the different characteristics of God." I agree. She explains four different personality types of wind, water, earth and fire. Based on her descriptions, my children fit perfectly into these elemental personalities.
You see, I have my wind, my Remi. She fills me with such wonder. (Remember, she is a fairy!)
I have my fire, my Savyn. She is so passionate, she ignites those around her.
I have my water, my Brandon. He refreshes me with his joyful nature and his eyes are as blue as the sea. I think I am complete.
Only God knows I still need the most important element. The ground element, and the only one that contains all three. Earth. My Bree Love. I know she will anchor my family and bring us to a simple wisdom as pure as a walk in the woods. "A planting of the Lord for the display of His splendor." Isaiah 61:3 (NIV)
Thursday, February 14, 2008-
My due date is still two weeks away, but Bree Love begins her descent today. It's the day the world celebrates love. This is perfect timing. My contractions are steady but not too strong so I rest and try to enjoy the day with my family. I know the time is coming soon, but I really want one more night at home. I'll call the doctor in the morning, I decide and get ready for bed. The night is still hushed and magical. I want to feel this moment so I open the window and breathe the air. It's crisp and cool, unlike that hot August day not so long ago. I think about our journey to get to this day and how much God has taught me, already, through this precious child.
What do I know for sure? God is with me. Whatever I am facing, I will rely on the abundant power of prayer. It's the only source of power.
I have the power to change my thoughts. What if...everything is okay? What if...I just close my eyes and ask for guidence, help, strength, patience? What if he answers? Trust me, he will.
I never really sleep, but I rest. I rest in the the knowing that God loves me and all I really have to do is love this child. And, this I can do. I confidently curl up around a pillow and whisper, We can do this, Bree Love. No doubt about it, we can do this."
Friday, February 15, 2008
I arrive at my doctors fully expecting to be sent to the hospital.
"It's time," he verifies.
I rush home to meet my husband. We hug our children with promises of a new baby to love when we return.
On the ride to the hospital, the contractions are closer and stronger. The cool breeze rushes through the half-open window to soothe and comfort me once again. We arrive at the hospital and settle into our room. The next several hours labor on and then, just like that, she is here.
When I hold her for the first time, I tingle. I brush my finger alond her cheek and she looks into my eyes for the first time, there are no words, only love. Rejoicing love.
Saturday, February 19, 2008-
Outside, the night sky begins to brighten as sunlight tries to peek out from increasing rainclouds.
A knock startles the quiet space, "Hi, can I come in?" the nurse asks.
"Sure," I whisper. Holding a clipboard, she walks over to Bree, who is peacefully sleeping in her bassinet.
"She's beautiful," she praises and I wonder if she knows. I glance down at the clipboard and see Bree Love, girl, Down Syndrome.
Words on a page, I think, defining my child, changing the way people treat her.

"Yes, she is beautiful and magical, too." I declare. Our conversation turns more personal as she asks about Bree. She pulls a chair as I relive the last nine months.

"I expected to come in and find a sick baby and a sad mother," she confesses. "But she's not sick and you're not sad."

"No, she's healthy and I'm very happy."

Before she leaves, she thanks me for sharing our story. I can tell that it moved her in a profound way.

I snuggle close with Bree and whisper in her tiny ears, "See that, Sweatheart, not even a day old and already teaching this world a thing or two." My head falls into the pillow as the rain begins to softly pelt the window. Just before my mind drifts away, the small voice whispers....

"It is well with my soul." And it is."