strut your stuff.

Once a year, our friends and family come together to honor our girls. It is a day of love and acceptance. A day of understanding and respect. If there were such a thing as Down syndrome Island... this would be it. A place where people just get it... they get our love for these two chicks above. Extra chromosomes and all.



As I pulled around the bend to bring the Buddy Walk site into full view... I burst into tears. This day is so important to me and it always brings so much emotion to the surface. Having so many people come together to promote awareness for Down syndrome... I cannot even put into words how this makes me feel. Me lurves it.



Happiness. Pure joy. Love.

That is all I see when I look back at these pictures from our walk.





Ain't no wet ground and mud gonna stop us.











Rachel Coleman from Signing Time was there... we love us some Rachel! Her videos are a huge hit among kids... and it is because of her that so many of our kids with Down syndrome can easily learn sign language.

And she totally could live on Down syndrome Island... she would fit right in!







We are so blessed to have always received tremendous support from friends that we met in Russia while adopting Nika. Their son... Sasha... grew up with Nika in the same groupa in their baby home... and they live 15 minutes from us.



I have a special attachment to Sasha... he and Nika were adopted on the same day. I will never forget the look on his face when he came running in the room showing off his new clothes just before he and Nika were sprung from the baby home. Oh my gosh... his happiness over just an outfit was freakin adorable... if that does not put things into perspective for you, I am not sure what does.



Our families traveled to Moscow together to complete our adoptions. Nika was so young and oblivious to what was going on... but Sasha was not. We were able to experience not only the adoption of a younger child, but also an older child that was very aware of what was happening. The good times and the bad times... it really helped us gain perspective as to the true emotion a child goes through in an international adoption.

Nika and Sasha are thriving today... and I feel so blessed to have this connection.



Dora! Oh, how we love our Dora.



Oh, Elmo and Spiderman... we love you too!



Mostly... I just love these three so much. 

Think about it.

Don't pity them. Don't talk down to them. Be open to them. Be open to people. It changed my life, I think it would change yours.
~Johnny Knoxville, discussing use of the R word and reflecting on his work in The Ringer with Eddie Barbanell, an individual that has Down syndrome

Talk to them. Be their friend. Love them. Hug them. Do anything to raise the spirits of people with different abilities. It is like God taking something away from them in one area and making them extraordinary in other areas. Break down the walls. Break down the stereotypes. Break down every wall you can.
~Eddie Barbanell, an actor that has Down syndrome



I have been told before that I am too sensitive when it comes to the R word. Quite honestly, that is hurtful. Just as hurtful as the R word. Is that what you are going to tell my girls too ... when one day they inevitably will come crying to me because their feelings are hurt after hearing someone called them retarded? Are you going to tell them they are being insensitive too?

Do you realize just how often the R word is thrown around?



I know. I used to be one of those people. How ignorant was I?

The I-didn't-mean-it-that-way arguments are meaningless. It doesn't matter how you meant it. Using the word insinuates so many things about my girls ... about any person with an intellectual disability.



Think about it. 

Is there anyone in your life that has changed your perspective of the use of the R word?

One of us, not one among us.

Mason: Mommy, what does Chicky's shirt say?



Me: It says, "One of us, not one among us."

Mason: What does that mean?

Me: It means that Chicky is just like everyone else, even though she has Down syndrome.



Mason (in a joshing voice): Noo she doesn't.

Me: Yes she does. Do you know who else has Down syndrome?

Mason: Nikers (referencing Nika, pronounced Nee-kers).

Me: Yep, and who else?

Mason: Lila.

Me: Yep.

Mason: And lots of babies have Down syndrome. Like Charlie.

Me: No honey, Charlie does not have Down syndrome.

Mason: Oh!

Ha. He was  impressing me there for a minute until he told me that he thought Charlie has Down syndrome. But you know what ... it just shows me that he views Chicky, Nika and Lila just the same as he views Charlie.

And isn't that the point? Love him.

Rants and raves. Well, mostly rants.

I'm tired. The pollen is kicking my butt. I'm behind on everything. I've had so many things to do. I've had so many things to say. But I feel like I have no time to do anything that does not involve my children. Join the club, right?

Therapy. The all encompassing therapy. Tball. My business. Soccer. Photography. Blastball. Young athletes. My own volunteer work. All that and more on top of trying to retain order within my home and just be a family.

I sound like a broken record.

All this stuff ain't happening. Well, it is happening but it needs to get easier. So I rehired my house cleaners. And oh how happy that makes my soul. They came yesterday and some of that must.retain.order.within.my.home stress has been lifted.

I feel like I have sort of been slapped in the face lately with a few things that have put me in a funk. I try really hard not to let things get to me, but seriously ... one human soul can only handle so much.

*

Payton has childhood apraxia of speech. In other words, we are trying to get our 4 year old to be able to say things like me instead of pee. Or bye bye instead of dye dye. It is an ongoing struggle. Watching her speech be broken down to such a level has been really eye opening for me. To see the stages of development from this perspective is something I wish everyone could see. It is breaking my heart that speech is so incredibly, frustratingly hard for her.

She is tired. I'm tired.





And then ... to increasingly observe other kids staring at her and asking why she can't talk. Although she has no idea any of this is going on, I do. I have always been fine with explaining her speech delay to other kids, but the older she gets ... the more I worry about them judging her.

Like four older neighborhood boys did this past weekend.

She said, "Hi."

They said, "You're stupid."

I presume they called her stupid because she looks like she is big enough to be able to talk, but they have picked up on the fact that she sounds like a young toddler. So now she is being called stupid because she can't talk. Fan-freaking-tastic. Not only that, but Mason was standing right there to hear it all ... coming from his peers. Fan-freaking-tastic.

*



Nika is in the third percentile of children her age for fine motor capability. Or so the evaluation says. I ... I don't even know where to start with that one. I feel like she is doing better than that, but I also think that I classify her as younger than she is ... I guess given the fact that she spent two years in an orphanage where she was cared for, but not really taught skills that a child with Down syndrome would need to be taught. I guess that is why? I am also concerned that she has childhood apraxia of speech and we have a detailed evaluation in a few weeks.

*

Mason is still struggling a bit with reading and it frustrates me to no end. I feel like no matter how much we work with him on certain things, he has such a hard time wrapping his little mind around it. Yet when it comes to math or science ... he is golden. Clearly he is my kid. So we roll on ... hoping he somehow is not being left behind in light of all that his sisters require.



Meanwhile the fact that he is growing up so fast has become so evident. The things he says crack.me.up. He has a new found obsession with Justin Bieber. He asked me to upload the song Baby to my iPhone, so now that is what we listen to as we stroll the aisles of the grocery store or as we drive down the road or as we eat dinner or as we try to sleep. Ha.

Then, Mason came to find out that Justin Bieber is on the cover of Teen Bop and other such magazines. "Mom, can you buy this for me?" 

Really? Really. I am having to buy teeny bopper magazines for my six year old? Wow, that makes me feel really old. As did spending our last shopping trip in abercrombie shopping for clothes for him. It really was a weird moment for me to have graduated from Baby Gap ... I mean abercrombie, this is big time, big boy shopping. So crazy.

*

I sort of have been really bothered lately by things I have read on an adoption listserve that I subscribe to. This attitude of I-will-adopt-only-the-perfect-child-or-none-at-all ... it seriously drives me insane and it is really hard for me to bite my lip. I try to remind myself different-strokes-for-different-folks ... but honestly, I'm not really sure how one can go into an international adoption and expect that their child will not have developmental delays, cognitive problems or even health problems.

This is par for the course people. No, a child will not always have those issues, but they could. And no, it doesn't necessarily taint the child for life. Or, what if it does? Does that make that child any less deserving of a family that loves him or her?

Urgh.



Sometimes I just want to hold Nika high in the air and yell, "Look at her! She is beautiful! She is healthy! She deserves to live her life! Down syndrome, developmental delays, cognitive problems and all!"

And then I go on to read about this Tennessee family that adopted an eight year old child from Russia six months ago. Because they could not deal with ... nor find the right means to go about a disruption ... whatever issues he brought with him, they thought it would be a fantastic idea to put him on a one-way flight back to Russia. After arriving in Moscow alone, he gave officials a note from his adoptive mother that explained that she was returning him due to severe psychological problems.

I mean seriously. Seriously?

And now Russia is threatening to stop Americans from adopting from Russia at all. I'm praying and hoping this will not happen, but it is a very real possibility. I pray that one bad egg doesn't ruin the bunch.

Please click here to see how you can help.

*

And as if that wasn't enough, I read about a doctor in Florida who is alleged to have "aborted the wrong fetus". Shocker that the fetus that was to be aborted had Down syndrome. After the parents found out that the wrong fetus had been aborted or "killed", they proceeded to abort the fetus with Down syndrome.

So let me get this right. The fetus that did not have Down syndrome was "killed", but the fetus with Down syndrome was "aborted"? Is the method of death not the same? Is a fetus with Down syndrome not worthy of life, so it is not classified as being killed? Is this what we have come to as a society?

And ... the fetus with Down syndrome was described as "deformed". Okay, having an extra chromosome does not make you "deformed"!

*stepping off soap box*

And had I finished this post last night like I intended to do ... I would have said ...

Goodnight.

Honoring my girls

Today is the day ... World Down Syndrome Day.

Today is the day that we aim to promote awareness and understanding of Down syndrome and related issues ... and to mobilize support and recognition of the dignity, rights and well being of people with Down syndrome.

 
Today is the day that we honor our girls ... and all of the other fabulous people with Down syndrome in this world.  

In honor of this special day and my love for networking with other completely-inspiring-super-awesome parents of children with Down syndrome ... I present to you Real Life | Down syndrome. 

Real Life | Down syndrome is a comprehensive look into raising a child with Down syndrome ... for the parents, by the parents. In other words, it brings the stories of parents across the world to one place. It is broken down into three main categories -- birth stories, life stories and medical hurdles -- allowing parents ... no matter where they are in their journey ... to find other parents that have been in their shoes. 

Someone to identify with ... someone to contact when you have questions.

Disclaimer ... I am still perfecting text and tweaking things here and there ... I welcome your suggestions! 

• In order to follow each of the three main categories via google reader or other feed, you must separately follow each one. Annoying, I know -- I'm sorry! That is just the way I had to set it up for now and until I have time to make it better, this will have to do.
• The families tab will be updated as needed ... and it is far from complete as it is. So ... if you are not yet listed on the blogroll, please get me your child's name, your blog name and your blog URL so that I can add you.
• The resources tab will also be updated as needed ... and it is also incomplete at this time. If there are any resources that you would like to see added, please let me know.
• The birth stories, life stories and medical hurdles tabs will be updated several times per week. I need your stories! Please contact me for more specific information. 

I hope you like the website ... and again, please tell me what else you might like to see!

Delivering a diagnosis ...

This past weekend, I had the opportunity to attend a Down syndrome conference. I lurve Down syndrome conferences. I have attended several of the national conventions, but this was my first time attending a local conference. It didn't disappoint.

The day started out with J. Frank Stephens giving an amazing keynote speech. He started out telling jokes and wanted everyone to know how much he loves his life. I cried. If his speech could be shown on national television to promote awareness ... it would be a great day.

The second keynote speaker was Brian Skotko. Equally amazing. He is such a great advocate for our kids ... and his sister.

I attended three sessions, the first of which was Delivering a Diagnosis to New and Expectant Parents, by Brian Skotko.  

Dr. Skotko will present the results of his research on how physicians deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics and American Journal of Obstetrics and Gynecologies and includes “take-home” recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents.

I attended this session with the intent of getting more information on how to reach out to our medical community. A friend and I are taking over this task for our local group and we are trying to figure out the right way to go.

Dr. Skotko talked about the two upcoming prenatal tests for Down syndrome.

• Allele Ratio Analysis ... Simple blood test, no risk to the fetus. Accuracy: data questioned. Eligibility: data questioned. Timing: performed as early as 12 weeks gestation. Availability: perhaps as early as this year. Cost: List price of $2,000; real cost for insurers about $700; less expensive than CVS or amniocentesis. Large-scale trial launched: 10,000 pregnant women, 30 worldwide clinical sites, results available after product made available. Limitations: not reliable for detection of translocation or mosaicism.
• Shotgun Sequencing ... Risk: simple blood test, no risk to the fetus. Accuracy: so far, 100% sensitive, but data small sample sizes. Eligibility: 100% of the population will be eligible for the test. Timing: performed as early as 10 weeks of gestation. Availability: only in research labs right now. Cost: about $700, less expensive than CVS or amniocentesis. Advantages: possible detection of translocation or mosaicism.

The thing I thought was so interesting about the Allele Ratio Analysis is that it cannot reliably detect translocation or mosaicism. Payton has Translocation Down syndrome, so in my case ... had I had this test ... it would not have been detected.

My problem is this ... parents are going to be told that they are having bloodwork done to see if their unborn child has Trisomy 21. Are doctors then ... at that point ... going to explain the three types of Down syndrome to parents and also explain that the test will not detect translocation and mosaicism? I doubt it.

And this remains the underlying problem ... parents are not being educated to the full extent when they are presented with a prenatal diagnosis of Down syndrome. One way or another.

National guidelines have been set so that expectant mothers are able to make informed decisions. They should receive non-directive counseling, accurate information, up-to-date information and balanced information.

Yet, 81% of medical of medical students report they "are not getting any clinical training regarding individuals with Down syndrome"; 58% of medical school deans say such training is not a high priority; 45% of ACOG fellows and junior fellows rated their residency training as "barely adequate or nonexistent"; and only 28% of ACOG fellows felt "well qualified" in prenatal genetic counseling.

Niiice.

In June 2009, a meeting between the ACMG, ACOG, NSGC, NDSS and NDSC was held to bring medical professionals toward concurrence in understanding prenatal screening and diagnosis of Down syndrome. Recommendations were published for prenatal and postnatal diagnosis ... and now the question is -- how can we get these recommendations to our local medical professionals and will they be receptive?

What can you do?

*Tell your medical professionals about www.brighter-tomorrows.org ... an interactive online simulation that asks medical professionals to view virtual patient-doctor sessions and provide responses to questions and situations.

*Take part in the First Call Program in your local community ... or start the program if it hasn't already been started.

*Reach out to medical schools -- especially genetics classes -- and those that are doing their residency ... ask to speak to them while they are still in training.

*Serve on hospital committees.

*Write letters to your obstetrician, keeping them updated on your child's life -- show them it is not all gloom.

All research review papers referenced here can be found on Dr. Skotko's website. You can also find a podcast of this session here.

Do me a favor ...

Watch this.

And know that it makes me want to throw up.

And no ... I am not overreacting.

ABC World News with Diane Sawyer

*ring ring, ring ring*

Me: Hello?

Friend: Hey, are you watching ABC World News with Diane Sawyer? They just showed a picture of Payton!

Me: Huh? Are you sure?

Friend: Yes ... I am sure! It was that picture of her when she was a baby ... she had on a white tank top and she was sticking her tongue out.



Me: Are you serious?! What were they talking about?

Friend: They were talking about the R word.

We continued to talk ... all the while I remained a skeptic. I mean really ... wouldn't I know if my daughter's picture was going to be shown on ABC World News with Diane Sawyer?

Ha ... apparently not!

I turned to facebook and asked if anyone had seen the segment.

I saw it and was screaming "That's Payton!!" ... I remember that pic!

I was doing the treadmill and was watching and SCREAMED at the top of my lungs to everyone upstairs that Payton was on TV. You go girlie!!!

Aww ... my baby was on the world news and I missed it! Thank God for the internet!


The ABC World News segment is a direct result of Obama's Chief of Staff referring to something as being "F'ing R____" ... thus the backlash. The View also discussed the use of the R word earlier that day.

Payton's picture was a clip from the ARC RESPECT PSA that was made back when Tropic Thunder came out. I also sort of forgot that the PSA is on every Tropic Thunder DVD ... pretty awesome.



To say we are proud is an understatement!

Changing lives ... one day at a time.

A prayer. And thanks.

Remember Polly?

This sweet, little girl had the first of her brain surgeries yesterday after being diagnosed with Moyamoya Disease not long ago. She is recovering nicely, but seriously ... it is breaking my heart that she has to go through this.

Please hop on over to her mom's blog to show her some love.

Continuing to pray for you, Polly!

**************

It is snowing. And I'm pretty sure it isn't supposed to stop anytime soon.

One problem ... Kyle and I are supposed to go to the Vikings vs. Panthers football game Sunday night in North Carolina.

I wonder if we will be able to get out of town?

They are talking many, many, many inches of snow. And people here freeze when it comes to snow.

Sigh. They better clear the dang roads! Hello ... do they not realize my husband needs his Brett Favre fix ... IRL!? For those of you saying, "What in the heck is IRL?!!" That stands for IN REAL LIFE peeps.

Ha.

**************

Thank you again to everyone who contributed for Zhora. Lisa also wanted to thank you ...

I wanted to thank everyone for their overwhelming generosity!! This giveaway was a huge success and hopefully Zhora is one step closer to finding his forever family. A huge thank you to Bethany as well for hosting this on her blog!! Hope everyone has a wonderful holiday!!!

By the way ... this picture shows just how much Zhora and Daniel (Lisa's son) really do look alike! Crazy, eh?

And yes, I totally ganked this picture from my friend, Kristen ... shhh, don't tell her. Ha.

PS ... I will have the pictures from the drawing posted on that post soon ... got my laptop back!

Thank you. Oh ... and the winners!

Thank you, thank you, thank you!

With the help of many of you, Lisa was able to fundraise $1,050 for Zhora! Amazing. I am praying that this sweet boy is that much closer to finding his forever family.

Moving on to the drawing for the iPod Touch and the quilt ...

Vanna White Nika and I just sat down to do the drawing for Lisa.

Hello Vanna ... I mean Nika.



Drum roll please ...

The winner of the quilt is ---> Raymond and Kim Robinson

And ...

The winner of the iPod Touch is --->

Debbie Bosman!

Yes, that is my mother. Lucky duck. Since this is Lisa's contest, I did not exclude anyone but myself from the drawing. As much as I wanted to include myself, I decided not to since I was doing the drawing for Lisa. So ... everyone else was fair game.

Think she'll let me borrow it? Yeah right. I just called her to tell her she won and she offered me her crappy, old, scratched up iPod. Ha.

Our little man -- Zhora

Just a little shameless plus for our little man Zhora ---> please consider sponsoring him and helping him to find a family!

$10 ... it is all it takes. And you could end up with an iPod Touch or a beautiful quilt!

We can't let him end up in an institution. We can't let him die.

Please? Click here to read all about it ...

31 for 21: Day 15 {Buddy Walk}

This Saturday, our family will be walking in the Down Syndrome Association of Northern Virginia's annual Buddy Walk. The Buddy Walk is an event to promote education and awareness for all people with Down syndrome ... obviously something that is very important to us.

As you know, our two daughters are blessed with an extra chromosome. It is events like the Buddy Walk that help families like ours to raise our girls in the best way possible. As previously noted ... and most importantly ... it promotes education and awareness for our girls. It also helps to provide the financial assistance necessary for things like therapy, adaptive equipment (if needed), resources that we wouldn't otherwise have, among other things.

We are asking for your support of our team, Two Girls Tribe! Every penny helps, so please consider supporting our girls or coming out to walk with us! Click here to make a donation.

Thank you so much to everyone that has supported us ... we appreciate it more than words can say!

31 for 21: Day 7 {More Alike Than Different}

How can this not bring a huge smile to your face?

A great reminder ...

I have seen the below story before, but I find it a great reminder that I am exactly where I am supposed to be in this world. As hard as it might be to raise a child with special needs ... and as easy as I might make it look (or not ... LOL) ... it is really hard.

I have constant reminders every day of how society views my girls as being different.

I have constant reminders every day of the ignorance and non-acceptance that people have against people with Down syndrome.

I have constant reminders every day of my girls' delays.

But because of my strength, my support system and my intense love for my girls, I get by and I make it work. Don't get me wrong, I do still have little moments of feeling sorry for myself, but for me, they are short lived.

I'm not really sure what my point is, other than to say there is nowhere I'd rather be, hurdles and all.

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how these women were chosen? Somehow I visualize God hovering over Earth, selecting his instruments for propagation, with great care and deliberation. As He observes, He instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron saint...Cecilia."

"Rutledge, Carrie, twins. Patron saint...give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a child with a disability."

The angel is curious. "Why this one God? She's so happy."

"Exactly. Could I give a child with a disability a mother who doesn't know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience or she'll drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today, she has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But Lord, I don't think she believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness, is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes she is a woman whom I will bless with a child less than perfect. She doesn't realize it yet but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy' for the first time, she will be witness to a miracle and know it. When she describes a tree or sunset to her child, she will see it as few people see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is there by my side."

"And what about her patron saint?" asks the angel, his pen poised mid air.

God smiles. "A mirror will suffice."

~Author Erma Bombeck

Bill of Rights for Parents of Kids With Special Needs

I'm totally stealing this from Michelle, who stole it from Ellen, but it's ok because Michelle asked Ellen for permission ... and I asked did not ask Michelle for permission. Michelle, do I have your permission? Ha.

I found myself nodding my head at so many of these and just wanted to share it here too ...

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

(Compiled by Ellen, in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

Listen to their voice ...

I wish I could embed this video on my blog, but it won't let me. So please click here to watch this video ... it is the voice of my girls. :o)

Celebrating my girls.

{Image courtesy of Will Schermerhorn, Blueberry Shoes Productions}

This past Saturday, we attended the annual picnic that is put on by our local Down syndrome association. The kids had a blast, as they always do. And I had fun catching up with all the moms ... and meeting some of the new families.

I am always so excited to see all the new babies that are being born with Down syndrome. I am sure that sounds very strange, but it is true. They are all so beautiful and I love chatting with their parents, if only to just let them know that we have been in their shoes and that everything is going to be fine ... even if it might not seem that way for them just yet.

We interupt this blog party ... to end the word

Spread the Word to End the Word

A personal message from John C. McGinley

Hi, I’m John C. McGinley. I’m an ambassador for the National Down Syndrome Society, and today I’m teaming up with Special Olympics to bring you a message that’s important to me.

John C. McGinley and his son, Max

So many times in life you are asked to change…

Change your clothes. Change lanes. Change jobs. Change the sheets. Change flights. Change your tune. Change horses midstream. Change your latitudes and your attitudes!

Change, and the ability to adapt, is to the human condition as air is to the lungs. We change, and in the doing, we thrive!

In fact, we just elected a president who promised, above all else, to “change.”

What if, on March 31, you elected to change the way you use the words “retard” and “retarded”?

Hardly seems like the largest of sacrifices. Not when you consider the changes in language that you have, so willingly, already elected to integrate into your vernacular. You no longer use the words nigger, or kike, or faggot, or jap, or kraut, or mick, or wop.

Why would you? Why on earth would you? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful! And that is not okay. It is wrong to pain people with your language. Especially, when you have already been made aware of your oral transgression’s impact.

Make no mistake about it: WORDS DO HURT! And when you pepper your speak with “retard” and “retarded,” you are spreading hurt. So stop it. Stop saying “retard” and “retarded.” Those words suck! You are better than that and you definitely do not need to be “that guy.”

There is no longer any acceptable occasion to lace your dialogue with the words “retard” and “retarded.” Without fail, those words are the stuff of hurt. They, straight up, are. So, stop it! Stop using the “R-word.”

The 7 million people with intellectual disabilities (around the planet) who are on the receiving end of this hate speak are genetically designed to love unconditionally. These “retards” are NEVER going to return your vitriol. Ever! So what could possibly be the up-side of continuing to use the “R-word” in your daily discourse?

We love you. We do!

And, just in case you missed it and you need an extra hug? We love you!

You do not need to love us in any kind of reciprocal fashion. You don’t. (It’s not that kind of bargain.)

But, how about on March 31, you elect to change? A word? Two stinkin’ syllables?

On March 31, join us and “Spread the Word to End the Word.” And the word is “retard!” It HURTS! So help us to cut it out.

Thank you! We do love you!
John C. McGinley

• Learn more about Spread the Word to End the Word
• Take the pledge to stop using the R-word
• John C. McGinley on “The Bonnie Hunt Show”

Spread the Word

"Most of the kids love unconditionally. So much love. It's so much love ... like love that you can't even believe is real."

"It defies rational thought to why you would pick on that group. There are 190,000,000 kids and adults in the world with intellectual disabilities ... 7.5 million in the United States. When you pick on that group, you've picked the perfect storm of cowardice to exercise your {hatred} ... because they are not going to return serve. Because that's not what they are equipped to do. They are equipped to {hug} ... not {fight}. So why pick on that group? It doesn't make sense."

Listen Up.