Congenital Heart Defects

A friend messaged me on Facebook recently with a simple yet desperate message.

"My baby needs to have open heart surgery. We meet with the surgeon on Monday."

Those two sentences seem so simple, yet to a mother whose child is facing the necessary evil of fixing his or her heart, those sentences are loaded with meaning. The anticipation of the surgery date. The fear the surgeon will have gotten up on the wrong side of the bed that day. The wrenching and awful grief of potentially loosing a child. The upheaval in family life as mom and dad spends most of their time at the hospital, worrying about the child in the bed in front of them AND the children in their beds at home. The concern of giving correct medications, proper bandage placement, and combating the occasional bad nurse all creep in, adding to the stress.

Having lived through this nightmare (and coming through it with flying colors) I feel it's my duty to try and ease other parent's fears and concerns. One of the very special gifts given to us by an online stranger that helped to prepare me and my husband was access to their child's heart surgery pictures. Yes, they were graphic. Yes, they were personal.

But you just can't imagine how they helped to prepare us for the way our daughter was going to look.

Sometimes we assume that after a surgery, our children will look much the same as when we nestled them into the surgical nurse's arms and they were whisked away through the labyrinth of hanging privacy curtains and warren-like rooms. The same beautiful face and body, except now with a functional heart.

Don't assume.

I'm sharing my child's surgery pictures in hopes that we can help other families going through this. Children with Down syndrome have a 40% chance of having some type of congenital heart defect, but thanks to today's advanced technology and surgical techniques, surgeons can repair almost anything. Statistics are on your side! Heart surgery has very high success rates; 98-99% depending on where you look. Those are great odds.

Posted below are Madison's surgery pictures. WARNING: EXTREMELY GRAPHIC!

This is Madison at 3 months of age, still at 7 pounds. Four days before surgery.

This is right after surgery. It's really freaky to see your 3 month old with a respirator breathing for her. Very mechanical and scary.

Early the next morning...still all kinds of tubes, drains, and wires. At least no respirator. It's a life-saving machine, but I was glad to see it go.

The sheer volume of equipment used in the NICU still boggles my mind. And my baby was hooked up to each and every one of those machines. 

Day 2 in the evening. She's looking better but still hooked up to most everything.
 

Hello, Baby! First time opening her eyes with a good-as-new heart, and I was there to see it!

This is my FAVORITE hospital picture of Madison. It's been 3 days now, and the nurses are remarking to me how fast she's recovering.

Day 4. Some of the drains and other tubes have been removed.

Day 5. Hooray! They disconnected the pacemaker. The wires are still left in-just in case it needs to be re-connected. She's looking GREAT!
 

Day 6. We got moved to a "regular" room. She looks so TINY in that bed!

Little bean in her giant bed.

The end of Day 6. All packed up and GOING HOME!!!!!!!

In three months, she doubled her weight. By the sixth month, her scar faded. She has been going strong ever since, and we are eternally grateful to the doctors, nurses, and surgeons who all performed to the best of their ability to save Madison's life. I wish every parent whose child is going through open heart surgery the best of luck. In some small way, I hope this post will help you. Hugs and prayers to you.

Teacher Born With Down Syndrome

Columbia, SC (WLTX) - One local assistant teacher is living proof that with motivation and a positive attitude there is nothing that can't be accomplished.
There's a teacher in Columbia, who brings more to her students than every day lessons, she brings a very important, life long one.

"I always tried hard, and I always did my best," said Bryann Burgess, an assistant teacher with a school called Kindermusik.
From day one, the... (more)

A Child First

I am MAD. Steaming, hot-potato angry. Teeth-gritting, fist-pounding MAD.

Here's the latest ignorant question from a well-meaning person, and the incredibly stupid answer. (paraphrased, because I deleted the link in disgust)

Q: I am a fifth-grade teacher, and one of my students, a girl with Down syndrome, displays an inappropriate fondness for older boys and men. I'm wondering if inappropriate sexual attention is a symptom of Down syndrome and how can I help this little girl?

A: Unfortunately, sexual acting out is common with mentally retarded kids and hopefully it's a phase. Other than that I can't help you.

Can we just say GRRRRRRRRRRRR!?!

First, "inappropriate sexual attention" is not a SYMPTOM of Down syndrome. More likely, it's a result of this poor child getting abused in some way. Kids and people with intellectual disabilities are more vulnerable to abuse of all kinds. (Including the abuse of widespread misinformation.)

Teacher, I know you didn't know, and I'm glad you asked. I just wish you would have asked a more reputable source. Here's another source. And another. Scroll down and read the part about sexual abuse.

Second, to the person who answered the question in an incredibly discriminatory, uninformed, and decidedly unhelpful way, PLEASE, for the sake of us all, if you don't know what you are talking about, SHUT UP. You are spreading lies, myths, and misinformation based on prejudices and discrimination.

This hurts my child and all others like her.

She is a functioning, normal member of society, and I don't appreciate you tearing that down, causing people to think differently about her.

I'm sorry if that was rude of me, but I don't care. Just because a child has Down syndrome doesn't mean they are not a child. They are CHILDREN FIRST, not a condition, disease, or group of symptoms.

Look closer, teacher. Your student is more like the others than you ever imagined.

It's Time.

Two years is a long time.

Milestones reached and not reached. Words spoken and not spoken. Sinus infections galore. Lots and lots of hugs and kisses. Potty training? Not yet.

She may not be fully talking yet, but she sure knows what you are saying. She knows right from wrong. She loves her family, and especially her brothers--she does everything they do, including tackling them.

Swimming, Grandma's house, hiking, movies. Church, preschool, grocery store, mall.

She even rides the bus to school.

She does it all, a fully included member of our family and community.

And why not?

Different

I’m always pushing how much the same my daughter can be in comparison with other people. Yes, there are a lot of similarities, but there are differences, too. For example, I recently watched a news clip online featuring a girl with DS who was an artist. Shown with her was a happy, innocent, childlike painting that she had done. (Her paintings have sold. Some go for $500). She spoke well, with diction and clarity. She was excited to tell us about her painting.

But there was no denying that she was different. She looked different, acted differently, and spoke differently. It made me sad. For all my encouraging and persistence in telling anyone who’ll listen that people with DS are the same as you and me, it’s just not true, not really. They ARE different. They can be artists, athletes, speakers, teachers, clerks, musicians, bowlers, weight loss success stories, husbands and wives, actors, business owners, drivers, dancers, and students, but all of these achievements are done in a different fashion.

Some need much more support then others to succeed. A few can do it without help, but not many, I fear.
I’m not sure why I’m feeling down about this today.

Because someone looks and acts differently doesn’t mean anything. People succeed with the support of others in all genres, all ages, all races and genders. People need people. And because someone’s IQ isn’t as high as mine or yours shouldn’t mean that person is of lower value. Because someone looks different shouldn’t mean that person is to be shunned. Because someone needs extra help shouldn’t mean help should not be given.

Intellectually, I know all this. Most of the time, my heart and my head agree. But today, I’m feeling the burden. I’m feeling the heaviness of the unknowns ahead. I’m feeling scared that people won’t know how special my daughter is. I hope so much for her! I hope she has a good life. Not only a happy life, but a contributatory and fulfilling life as well.

Maybe I just need a nap.

STARZ Philanthropists, Anna and John Sie

Wow!

The Down syndrome community has been blessed this year. First, we get Sarah Palin, and now this as described in Rocky Mountain News:

John Sie has a straightforward goal when it comes to Down syndrome.
The retired cable television magnate doesn't just want to finance incremental study of the condition. Over the next 10 years, he hopes to help scientists cure it.

To that end, Sie and his wife, Anna, announced Monday that they have committed $34 million to create the Linda Crnic Institute for Down Syndrome.

(want more article? go here)
Millions will go into Institute for Down Syndrome

Perspective on Palin

Recently I was asked my feelings concerning Sarah Palin, and her effect on the Down syndrome community in general.

Two words:

Love Her!!

All politics aside, when she and her husband first had Trig, we all knew it. And we rejoiced in the fact that Trig was loved and not discarded like so many are before they are born. We welcomed her into our hearts as a soul-sister into the club of extra chromosome.

Then when she was picked as Vice President by John McCain the national spotlight hit and man, it was blindingly hot. So many issues, so many emotions, so many divisions. People have their feelings about who they want to support.

In one forum I am active in, mostly she received support from the members. There were some Obama-ites who really couldn't stand her, even with the common bond of having a child with Down syndrome. There was a lot of accusations and name calling until the forum owner put a stop to it.

In general, she has caused quite an uproar in the Down syndrome community! I think it's great. Most people totally support her and absolutely love her, not only for who she is but for her promise to us as parents as given in her speech at the Republican convention:

And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.

That's how it is with us.

Our family has the same ups and downs as any other — the same challenges and the same joys.

Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message:

For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

She may not be perfect, she may not have all the answers, she may even disagree with me on some political issues. I don't care. She's my girl, my choice for VP. I was going to vote begrudgingly for McCain-if only to thwart Obama from getting in-but now? I am back in this election, baby!

Would you cure your child of Down syndrome if you could?

Why would people be against a cure for Down syndrome?

One theory is that it's all about pride and acceptance. To want to cure something implies that the something is bad or abnormal, and people don't want to feel thay they are bad or abnormal. They want love and acceptance, and can you blame them?

Why can't we love and accept those who are different now, and if there was a cure why can't we accept that too if the person wants to be cured?

I love my daughter with all my being. I am so proud of her and think she is the most adorable thing ever. I love other people with DS, too. There is just something about them that is very special. It's like looking into the eyes of God.

On the other hand, I am also sad for my daughter in some respects. Yes, she will achieve to the best of her ability, find happiness, and have a good life. She makes people smile.

But there will also be things she will never do. She will always have to struggle. She will be the butt of jokes from cruel people. She is more vulnerable to predators. She will have trouble with speech. She has a higher chance of becoming sick from a myriad of diseases including Alzheimers and leukemia.

Despite the struggles, she WILL have a good life, she WILL inspire people, she WILL help in promoting acceptance and awareness of Down syndrome, and she most definitely WILL love and be loved for who she is.

So would I cure my daughter if I could? I think I would, with mixed feelings. I would miss some things about Down syndrome, but as for the health issues, I'd kiss them goodbye and never look back.

Sisters

I went to pick up Madison at school the other day, and who did I see but another little girl with Down syndrome.

My heart melted into a shining, sparkly puddle; the liquid love infused my entire body with joy.

I went up to her, bent down, and said with a big smile- "Hello, sweetie!" And I was rewarded with THAT SMILE.

You know the one. The smile that lights up the world. Pure love, pure innocence. Pure something else...I haven't figured out just what that quality is yet. Perfection? Maybe.

And then I looked over at my Madison. Looked back at the girl. Looked at Madison. Looked at the girl. She was dark to my baby's light. Her hair was in a ponytail, like Maddie's. Her eyes were that lovely almond-shape, like my daughter's. She was petite, like you-know-who. She exhibited the same aura, the same cloud of mystical joy around her. Surely I am not the only one who notices?

My heart gives another jump as I realize that these two could be sisters, they look so similar to each other.

They must be angels in disguise.

Why I won't See See "Tropic Thunder"

I was going to stay out of this one, I really was. There are a lot of people commenting and blogging about this topic already. But I can't stay out.

No doubt by now you've heard the debate--"Tropic Thunder" is a Ben Stiller, uh, comedy, if you can call it that. It's also rated "R" so I know that a lot of you won't be going anyway. In the plot is a movie-within-a-movie, where the actor plays someone with intellectual disabilities.

I can hear the new catch-phrase now--You Never Go Full Retard. Nice. I'm just glad my daughter is too young to know about the way society thinks about her.

I usually don't put anyone else's words on this blog, But this is too important not to.

What ‘Tropic Thunder’ Thinks Is Funny
By Timothy Shriver Monday, August 11, 2008; A15

I’ve been told to keep my sense of humor about the film “TropicThunder,” which opens this week. Despite my requests, I have not been given the chance to see the movie. But I’ve seen previews, read aboutit and read excerpts of the script. By all accounts, it is an unchecked assault on the humanity of people with intellectual disabilities — an affront to dignity, hope and respect.

Consider this exchange:
Ben Stiller’s character: “There were times when I was doing Jack when I actually felt retarded. Like really retarded.”
Robert Downey Jr.’s character: “Oh yeah. Damn.”
Stiller: “In a weird way, I had to sort of just free myself up to believe that it was okay to be stupid or dumb.”
Downey: “To be a moron.”
Stiller: “Yeah.”

At another point, about acting like a person with intellectual disabilities, they say:
Stiller: “It’s what we do, right?”
Downey: “Everybody knows you never do a full retard.”
Stiller: “What do you mean?”
Downey: “Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act retarded, not retarded. Count toothpicks to your cards. Autistic, sure. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes.Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain’t retarded. You went full retard, man. Never go full retard.”

I worked with the Farrelly brothers on a film on this topic. I know about edgy comedy. I’m also told that movies are equal-opportunity offenders.

So here’s an equal-opportunity response to the equal-opportunity offenders:
People with intellectual disabilities are routinely abused, neglected, insulted, institutionalized and even killed around the world. Their parents are told to give up, that their children are worthless. Schools turn them away. Doctors refuse to treat them. Employers won’t hire them. None of this is funny.

For centuries, they have been the exception to the most basic spiritual principle: that we are each equal in spirit, capable of reflecting the goodness of the divine, carriers of love. But not people with intellectual disabilities. What’s a word commonly applied to them? Hopeless.

Let’s consider where we are in 2008. Our politics are about overcoming division, our social movements are about ending intolerance, our great philanthropists promote ending poverty anddisease among the world’s poor. Are people with intellectual disabilities included in the mainstream of these movements? For the most part, no.

Why? Because they’re different. Their joy doesn’t fit on magazine covers. Their spirituality doesn’t come in self-help television.Their kind of wealth doesn’t command political attention. (The bestof the spirit never does.)

Sadly, they’re such an easy target that many people don’t realize whom they are making fun of when they use the word “retard.” Most people just think it’s funny. “Stupid, idiot, moron, retard.” Ha, ha,ha.

I know: I could be too sensitive. But I was taught that mean isn’t funny. And I’ve been to institutions where people with intellectual disabilities are tied to beds or lie on concrete floors, forgotten. I’ve heard doctors say they won’t treat them. I know Gallup found that more than 60 percent of Americans don’t want a person with an intellectual disability at their child’s school.
I’ve talked to people with intellectual disabilities who cry over being insulted on a bus. I’ve received too many e-mails from people who are devastated not by their child’s disability but by the terror of being laughed at, excluded and economically devastated.

It wasn’t funny when Hollywood humiliated African Americans for a generation. It’s never funny when good and decent human beings are humiliated. In fact, it is dangerous and disgusting.
This film is all that and more. DreamWorks went so far as to create a mini-version of Simple Jack and posted it online. The studio has since pulled it down, realizing it had gone too far, even in an age of edgy, R-rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about language that is bullying and mean. Ask your friends, your educators, your religious leaders to help us to end the stubborn myth that people with intellectual disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and our pocketbooks. We don’t live in times when labeling and humiliating others is funny. And we should send that message far and wide.

The writer is chairman of Special Olympics and a columnist for washingtonpost.com’s On Faith discussion site.

Spreading Awareness

I wore one of my advocacy t-shirts today to one of my son's soccer practice.

It says-Down syndrome isn't scary, it's just different.

The reactions I get are so varied! Most people take a quick look while in passing. I can see them read the message and absorb it. That's exciting! It's a quick message to someone that hopefully will stay lodged in their brain for life.

Some people take a look at my shirt and then always turn and look for Madison. These types never smile, in fact some of them have such sourpuss looks on their faces that I wonder if they have a toothache or something! What's wrong with them? Don't they know how special my daughter is, or really ANY child when you get right down to it?

Most people LOVE my daughter because she is super cute and sweet! She waves madly at most anyone who takes an interest in her. When she gives you one of her 500 watt smiles you cannot help but smile back. It's physically impossible to resist her.

I plan on continuing to educate people for the rest of my life--to let people know that a child with Down syndrome is just a little different than any other child. And really, they are not that different at all!

It is my hope that people see how NORMAL she is and think twice before assuming that a diagnosis of Down syndrome is bad. Yes, it is different, but most certainly not the end of the world.

If you think a diagnosis of Down syndrome is undesirable, try telling that to the hundreds of families waiting to adopt a child specifically with Down syndrome.

Love the New Home

Thanks, everyone, for being patient as we move our old blog to it's new home. I like the new place! Eventually the old posts will be re-published here (just the good stuff) and soon after the old place will be a ghost town.

Don't miss a post--subscribe to our blog! I usually get a post out every couple of weeks, so your inbox won't be flooded with mail--at least not from me! ;)