ONE Thing I Would Want to Share...

October was Down Syndrome Awareness Month. I usually participate in trying to blog each day of the month in October but this year.... I did not blog as I have in previous years (you can click on any of these years 2008, 2009, 2010 to find previous Down syndrome Awareness posts if you'd like).


However, if there was ONE thing I would want to share ...to bring awareness to, is that if any one of us were to hop in a plane...fly a little over half a day away.... we would step foot backwards in time in terms of acceptance for a child like my son. My son Reid would have no place in many eastern European countries. He would be tossed aside as worthless. He would be sent away right after birth to an orphanage where his outlook would be grim and no one to love him. If I tried to keep my son I would be ostracized by my community. His only hope would be to be adopted, and if that did not occur by the time he was 4 he would be sent to an institution where his care would be even grimmer. I have seen videos of such institutions and been just gutted by what I saw.... and because my brain cannot fathom that type of treatment I rationalized that that must not be true...or that only happens in very few places and they must be 3rd world countries... but the truth is it does happen, in fact there is a family trying to adopt a little girl from one of these institutions right now who is 9 years old....and she weighs 10 pounds. TEN POUNDS. My heart and head cannot comprehend that. Why??.... because she was born with an extra chromosome, like my son. THAT. IS. SO. WRONG. ....How can they not know that is wrong? How can they not see the beauty in these precious children?
There is a mom here in the US who after her son Reece was born with Down syndrome learned of the tragedy I wrote of above.... and she was moved to action, because these children just like her son...just like my son, deserve so much more. She started a non profit organization called Reece's Rainbow that helps raise funds for families who are wanting to adopt these children...to re-write their life story, to give them a home to call their own and a family to love them and show them they are valued and precious. In five years Reece's Rainbow has helped over 500 children find their Forever Families... unbelievable, I am so grateful she followed her heart to help make a difference!! Here in the United States there are waiting lists to adopt children born with Down syndrome, thank you USA for getting it, for valuing life...but for our little friends oceans away it is not the same, they do not have people in their country waiting to adopt them.... and they need our help.
Reece's Rainbow is kicking off their annual Christmas Angel Tree Fundraiser, where they raise money to go directly into the children's adoption funds. When you donate $35 or more, you will recieve a beautiful photo ornament of your sponsored child to hang on your tree. This is a very special way to "share Christmas" with an orphaned child. The goal is to help raise at least $1,000 for each child. Click here to see the faces of these precious little ones needing our help, waiting for their "Forever Families" and watch their funds grow as we together raise awareness of this tremendous need.

How incredible to be able to make a donation that LITERALLY will help save a life. ...And what a great message to share with your children.

Please consider sharing about Reece's Rainbow and The Christmas Angel Tree Fundraiser if you have a blog, or on facebook..... you never know just how far your efforts could go, you may know someone who can make an incredible difference in one or more of these children's lives. 

Can you imagine my Reid in an orphanage? It is so unfathomable to me.... 





Grab This!

What do you want people to know about raising a child with a disability?

Lately the following "status" on facebook has made its rounds in honor of special education week...

"People need to understand that children (and adults) with special needs don't have an illness, so there is no cure and it's not contagious. They only want what we all want: to be accepted."

This is so very true.... and it was actually that facebook status I first thought of when I received an email today asking me if I wanted to contribute to an article with the title;

What do you want people to know about raising a child with a disability?

The author is looking to write an article for a parenting magazine:

I am writing an article about parenting a child with a disability. It can be funny, informative, or a form of venting. All I need is a single phrase, a few sentences at most. If I see common themes being repeated, I'll know it's important to include it! It will probably be in a "top ten" format, and I am hoping to keep it simple!

So, in addition to highlighting that facebook status I thought I would also answer that question with my own thoughts...
"Raising a child with a disabilty is just like raising a child without...you have your highs, your lows, your battles and your victories. The only difference perhaps is the extra sense of perspective and the extra dose of clarity gained from that special soul of what is truly important in this life."Cheri
But, what about you? What would you like people to know about raising a child with a disability?
I have decided to send the author this blog entry rather than just my thoughts so he can hear from all of us collectively.... if you feel compelled please share your thoughts by May 1st and leave your name.

"I Did It"

Have you heard about these fabulous shirts....?? The brain and heart behind these shirts is Jennifer, Joaquin's mommy, at Three's A Charm. As soon a Jennifer posted the idea I sent her a check right away and couldn't wait to get ours in the mail! The heart and intent for these shirts is the essence of Jennifer as I have gotten to know her through our blogs... she is amazing...the shirts are amazing...her "pay it forward" so to speak with the purchase of the shirts is amazing (please read her post for details). I am thrilled that Reid can proudly wear his shirt as he has indeed earned the right to say "I Did It" for so many milestones....and I am thrilled that this shirt will also remind me each time he wears it that somewhere someone will have a Gifts 2 book in their hands because of it. (Jennifer also happens to be one of the contributing authors in the book) :)!

Reid has earned the "I Did It" slogan for so many, many things in his short little life...enduring 2 open heart surgeries is only the short of it. His newest achievements have come in the form of speech and cognition...which is so thrilling for us! Little by little he is starting to say new words and though Reid cannot say "I Did it" on his own yet...honestly the phrase would have been so appropriate for the little story I want to share, which made me smile from ear to ear! I heard Reid reading in is room as he does everyday and I usually hear him laugh at something or say wow or whoa...at whatever catches his attention, but on this particular day I heard him say "Ba-bye" over and over again...I had to go take a peek to see what he was reading and I found him saying bye and waving to this picture below.... I just giggled and found that to be just about the cutest thing and the SMARTEST thing that he recognized that this boy was turned away from him and because he saw the back of his body and his little butt (which made Luke giggle) that meant he was running away, therefore eliciting a "Ba-Bye" from Reid. The thing is Reid had no idea why I was so excited but I knew...I knew that to be such a great speech and cognitive connection....so I said the phrase for him..."You Did It Buddy"! This page is from the book, No, David (by David Shannon).

Okay sooo...I know the intent of the shirt is not meant for this....but truth be told about events around our house this shirt can also indicate "I Did It" to fess up for mischievous endeavors that my little one has found himself apart of. Like....if I un-crop the top picture you can actually see the mess he created with his baskets of toys in his little playroom.

or the "I Did It" for once again pulling tons of books off the shelves and out of baskets in his room....once again, sigh! :)

Or...how about this little beauty of a mischievous act??....Don't let the innocent smile or his mismatched pajamas fool you, once I walked out of the room the pure white chair was no longer as I had left it, nor my desk....he REALLY should have been wearing his shirt this day.... But, no worries Luke shouted out for all to hear and for all to be clear..."He Did It, Not Me!!!!"

Jennifer...I love these shirts and I have loved reading the stories of families who have also purchased the shirt and sharing their children's "I Did It" stories....what a special thing you have started...I am so glad to share in it!

21 Quotes by 21 People with Trisomy 21 on What It's Like to Have Down Syndrome

In celebration of World Down Syndrome Day, which is today March 21st... The Down Syndrome Association of Los Angeles has sent 21 emails beginning March 1st, presenting 21 emails for 21 days with 21 quotes by 21 people with Trisomy 21 on what it's like to have Down syndrome. Below is the culmination of all 21 quotes... enjoy! :) 

"It [Down Syndrome] makes me feel special. I feel good inside." By: Christine Young (36)

"Having Down syndrome is cool because I can play any sport I want in Special Olympics with my best friends." By: Jared Kozak (19)

"It [Down syndrome] makes me an excellent photographer, I can make money as an actor, I have lots of friends and have been Susie's boy friend for 5 years on Wednesday, April 1st. I can get married like Corky and Amanda on 'Life Goes On' [television show]."

By" Blair "B" Williamson (29)

"Down syndrome is in the genes,

but not these jeans."

By: Shannon Dieriex (24) 

"I can be very independent and I love to cook."

By: Jasmine Banayan (20)

"I love my living situation and love being with my apartment mates."

By: Patrick Ziegler (25) 

"I am proud to be me and I love my mom and dad and I love all my friends with Down syndrome. Thank you for being kind to us." 

By: Adinan Schreck (19) 

"Down syndrome is something you are born with. You can't take it away from yourself. I'll always be a little slow and need help with my reading but I am still a person with feelings."

By: Robin Trocki (52 years young)

"Since I have Down syndrome I can teach my big brother how to work harder and never quit."

By: Eden Rapp (12)

"I feel like I'm enjoying myself. I feel like I could fly. I'd like to meet a girlfriend."

By: Kevin Ewing (28)

"I love myself! I love my life! I'm very happy! I love 'Born to Act Players.' the acting group my mom started for me. Up with Down's!"

By: Casey Rings Powell (28)

"Mommie, sit"

By: Leo Woodrum (5) 

Leo's mom, Gina Vivona needs to sit sometimes. She is the President of the DSALA Board of Directors and the author/producer of an audio book called Kazmir, The Flying Camel. 

"I love living in my apartment with my roommate."

By: Andrea Hall (32)

"I don't think about my Down syndrome. I think about my ability. I have family and friends and things I do. I'm just like everyone else.

By: Chris Burke (43)

of "Life Goes On"

"I like meeting other friends with Down syndrome because we have a lot in common."

By: Lauren Potter (18) 

"I am fine and happy having Down syndrome. I like to learn stuff at Mrs. Brown's House like reading, writing and having fun too. I am also learning to be a teacher."

By: Elizabeth Beutel (11) 

"I go to A.R.C. I am Down syndrome. Yes, I play tennis everyday, I have been doing it all the time, a long time.

Deborah Henrikson (44)

"Down syndrome makes me special among my friends and family. I love to sing and dance with my NY Friends. I will be an actor one day. I love my dog Roxy."

Parth Bharat (19)

"I do it!"

By: Eliza Widdicombe (8 years old today 3/19)

"I can get a lot of money if I sell my extra chromosome on eBay. I don't need it anymore." 

By: Graham Sheldon (23 today 3/20)

"Having Down syndrome means nothing to me, I'm special like everyone else. I do not let people judge me for having Down syndrome. The important thing is how I feel about myself. On the inside, I feel beautiful."

By: Edward Barbanell (31)

(Billy in "The Ringer") 

Welcome to Holland

After Reid was born one of Luke's preschool teachers told me of this poem, Welcome to Holland. It lifted my spirits then and again this evening when I came across it on the internet. I am actually loving my detour to Holland...I didn't know I would be visiting...but I'm here...been here 20 months now and I'm adjusting well to my new surroundings. Luke is learning a lot about life on this trip too and he'd tell you there isn't any other place he'd be if it means being able to be with his "best brother". From time to time we'll be posting about the sites we see here in Holland and the things we are learning from this trip.

Welcome to Holland

by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your time mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.