Wednesday, August 31, 2011

It's All About Attitude

To be perfectly honest- I SHOULD be in bed. In fact, I was upstairs brushing my teeth and yawning- yearning for the comfort of a bed already warmed by husband- when I realized I had been mentally writing a new blog post. Who am I to deny the flow of words??

I want to start with this quote:

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our Attitudes.”- Charles R. Swindoll

When I first heard this quote I was 20. I was working for a man whom I admired and respected very much. Mike was a heck of a boss. He was, by far, one of the biggest influences on my early adulthood. I will always remember him.

Mike loved this quote. He had me print it out and post it on the bulletin board above the phones at the pizza shop he owned and I helped manage. I read it every day. It made a HUGE impact on me and I still think of it to this day- nearly 12 years later. I can't thank him enough for this.

I was talking to a friend tonight. She is a wonderful mom. She is also blessed to be part of the DS community. I really like her. And, though we have never met in real life, I feel a strong connection to her. She is honest and funny and she is REAL.

She said something to me tonight that I have been thinking on so much and it's funny she said it to me tonight because I had a separate experience today which directly relates. She said to me, "I don't love the DS."

I have said numerous times that I would not change my boys for anything. If I were given a wish it would not be to remove their 3rd 21sts. Until tonight, no one has made me think about that too much. She did.

Here is my reasoning. Casey and Connor are everything I never knew I needed or wanted in my life. They are the reason I am who I am today. More importantly, the fact that they have DS is a HUGE reason why I have grown and evolved into who I am. If I were to change this one thing about them I would change everything about my life today. I would not have the friends I have. I would not be as patient and caring. I would probably not have gone back to church and focused on my faith as I have. I would not be as happy with me. If I were to remove that teeny tiny little extra genetic material my ENTIRE LIFE WOULD BE DIFFERENT.

Think about that- the very thing that pregnant women dread, pray to happen to someone else's baby, not theirs- is the exact thing that has made my life and ME into something to be proud of. That's heavy stuff. If it weren't for Casey and Connor's DS I would have continued going about my life as a self-centered jerk, using the R word, judging people, not caring- pretty much just sucking. Instead, God gave me my sons and in doing so he blessed me with something else many people pray for- a second chance at living a life to be remembered. PRAISE BE TO GOD!

The first few days after "The Diagnosis" were a roller coaster. I was devastated and in love, I was broken and battered and also made whole, I was destroyed and rebuilt. Honestly- it was almost too much to keep up with- I went through every emotion known to man- and then some. At the end of those days though I came out of the darkness and into a world that is so much better and more beautiful than any I had ever known.

When I looked into the stunningly beautiful faces of my sons I felt the weight of the job given to me- it weighed heavy on me but at the same time- I knew I was capable of succeeding and making a difference. I made the decision that I would go into the world and spread the word that life is not over because you have a child/ren with a disability. It's just a new path.

In the last 21 months I have learned so much. I have learned that life really IS about your attitude. I am positive and upbeat about everything in our lives about 99.5% of the time. There are days when I feel sad, or overwhelmed or just plain sorry for myself but then I remember that Casey and Connor deserve to have a mother that cherishes them- as they are- no questions- no limits.

I mentioned another incident that happened earlier in the day. While we were waiting for Matt to finish his last class on campus today, the boys and I were sitting on a bench enjoying the beautiful day and watching all the people. They loved all the "big boys"- aka college boys- walking by. They smiled and waved and even got a few high 5's from these 19 and 20 somethings. It was great.

Sitting on the bench beside us was a very pretty woman. She was polite and smiled and asked the usual questions we get- 'Are they twins' 'How old' 'What are their names'- the basics. Then she asked me if they were walking and talking a lot. I smiled and said, "No. They both have Down syndrome and they are delayed a bit in those areas but we get closer everyday." She looked at them, looked at me and said, 'I'm sorry, I didn't know.' I told her many people don't notice and that they are the biggest blessings in my whole life. We talked more- about her 6 month old son, her desire for another baby, the boys' fan page (shameless plugs all around!!) and she thanked me for talking with her.

As she was leaving she said to me 'Many people are afraid of having a child with Down syndrome and here you are, and you are SO happy. Smiling. It's inspiring.' My heart sang. She told me she'd look the boys up on Facebook. I hope she does. I also hope she reads this so she knows how much she truly touched my heart today. A few minutes after she left another woman- barely a woman- came out and said to me that the boys are the the most adorable babies she'd ever seen. She asked me, 'Do they have Down syndrome?' I said yes. She went on to explain that her uncle who is almost 40 has DS and is 'so high functioning you'd never know it' and he is 'awesome.' She stayed long enough for C&C to smile and flirt a little and left as Matt came out of the building.

I love days like this. I love to meet new people and tell them that my life is amazing and worth living and that Casey and Connor lead full lives. I love meeting people who already know what I know- that DS is beautiful and the people who have it are angels on Earth.

My attitude about our life is one of positivity and hope. I believe with all my heart that I can make a difference and that C&C can and will accomplish amazing things. If my attitude were any different I don't think I could function.

So, here is my conclusion. I love Casey and Connor. I love every single thing about them from their beautiful almond shaped eyes, their single palmar crease, the broad flat plane of the bridge of their nose. I love their perfect little toes, their curiosity, their hugs, their moods, their belly buttons. Everything. Every. Last. Chromosome.

I even love the DS.

Food for thought- “We are all faced with a series of great opportunities brilliantly disguised as impossible situations.” Chuck R. Swindoll

What will YOU do with your great opportunities?

xoxo, Meghan

Monday, August 29, 2011

It is what it is.

When I began this blog I did so because I wanted to teach people what Down syndrome is really all about. I wanted people to know that it is not the end of the world and I figured that if I could save one unborn baby diagnosed with DS from being aborted I would have been a success.

My goals remain the same. I also made a promise to myself that what I write is honest and heartfelt and as real as I could make it- no matter what. If I am going to be true to that goal then I have to make this post.

My sons amaze me. Honestly. Everything they do is so cool. I am sure all mothers feel that way about their kids but there is a depth to Casey and Connor that I was not expecting. I'll explain.

The other day Casey was busy at work with his Mega Bloks. He LOVES his blocks. That boy is one heck of a tower builder! The amazing thing is- during this particular session he built a tower of only blue blocks. There are red blocks and yellow blocks, and green and orange blocks all mixed in but Casey wanted only the blue ones. He really thinks things through. He is patient and he knows what he wants and he does it.

This is not the first time Casey has searched for the right blocks to make a creation come to life. We have a great video of him building where he is searching for specific blocks. He sometimes only wants blocks with 2 posts or sometimes he wants ones with 3. He shows a level of concentration that I was not expecting and am continually impressed with.

Connor is no different. He loves books. He will sit and look at books for 30 minutes or more. He studies the pages, he has favorites and he adores being read to. He watches so closely when people speak to him. He watches and tries to imitate. He is fascinated by words.

My sons are incredible. They are funny. They love music. They have incredible rhythm.They love one another. They high five friends and family and strangers alike. There is nothing about Casey and Connor that is not magical.

They are my miracle men.

I am proud of them everyday. I love them more than I thought I could ever love another person- or people. I would not change anything about them.

I say all that because there are times when I do feel a little sad. I mentioned before my group of mom friends that were all pregnant at the same time. They all talk about what their kids are doing and I feel left behind, out of the loop- alone. I love to read about their children and their children's milestones but there are times when I read those things and there is this little nagging in me that says, 'I want those experience.' It may actually be worse with my friends I see in person who have babies that are younger than my miracle men and I see in real time how much these other babies do that the guys don't. Yet.

I know comparing kids is not the way to go and I also know that each child is different and comparing C&C to their typical peers is not ideal but I can not help myself.

I wish I could explain how much I long to hear the words mommy, daddy, and I love you. I wish I could tell you how much it hurts to see babies younger than my boys up and walking or doing somersaults. I wish that I could explain the deep and difficult to ignore feelings of jealousy I have when someone posts a story about the amazingly funny thing their child said. I get impatient. I don't mean to and I do try to keep myself in check because I never want my boys to think for one millisecond that they aren't good enough or I wish that they were different. They are better than good enough and they are PERFECT as they are but as a mother, I want to see milestones. I love the scenic route. I really and truly do. However, there are times the turnpike is faster and you just want to get where you're going.

The true problem lies in me. I have trouble admitting sometimes that this is a tough journey for me. I don't bemoan my life. I am truly and profoundly grateful for every single blessing in my life. God has given me a beautiful family, a solid faith, health, love, happiness, friendship and so much more. But to be perfectly honest- there are times it's rough. I worry over all the what ifs of the future. I wonder if the boys will be happy. I wonder if they will have friends, be treated kindly, fall in love. I worry kids will pick on them or that they will have a teacher who just doesn't want to deal with them. I worry about far worse things that I won't write about.

I know that no child's future is certain but the reality is- there are a lot more gray areas in my sons' lives than there are in a child born without disabilities. The biggest obstacle that my sons and others with DS face is the stigma that comes from the label DOWN SYNDROME. People who don't know better assume the worst or they believe in the inaccurate portrayals of people with disabilities that Hollywood spews about. It's getting harder for me to decide who to tell about C&C if they have never met them. (For the record- I feel utterly disgusted with myself for admitting this)

This came up recently. My husband and I just joined the Natatorium- it's our community rec and aquatic center. There is a child care facility in the Nat for children ages 1 and up for when parents are working out. On the information sheet all parents are required to fill out there is a question about any disabilities your child has. I debated putting anything down. It went something like this:
Me: does it really matter? I don't want them to be judged because I wrote DS on a stupid form. I'm not writing anything.
Me part 2: What if something happened to the boys and they are not covered because you didn't disclose they have DS?
Me: Well, I am not ashamed they have DS why not just tell the caregivers? That way- if there are questions you can use it to educate them.
Me: What if they are not as nice or as welcoming to the boys because they know and they are ignorant about DS?
Me: This is stupid, just write it. Be proud of your kids. Let them shine and show people what that bonus 21st is all about.

In the end I wrote this: Casey and Connor have Down Syndrome. They have no medical issues that will affect their care. They are a little delayed in gross motor skills. There are NO SPECIAL REQUIREMENTS for their care.

I hate what I wrote but it's straightforward.

At the end of the day, Casey and Connor will be who they are and accomplish what they accomplish. I can't change it I can only support, encourage and gently nudge them to be the absolute best they can be.

Here's one more lesson I am learning. Casey and Connor are the ones who are perfect in our family. I am the flawed one.

They are making me into a better version of me. There are certain things that are harder to change about me.

They are patient teachers though. I will continue to strive to be the very best mother and Meghan I can be.

Sunday, August 21, 2011

Buddy Walking.

Yesterday was our Buddy Walk here in North East Ohio. It was the 11th year for this event and this year was the biggest and best yet!

I had the privilege of serving on the planning committee this year with some absolutely amazing women and my fantastic husband. I was honored to take part in this event and the behind the scenes look into what goes into something this HUGE is crazy. I never imagined all the little details that go into planning a fundraiser that attracts over 4,000 people. Awesome!

I won't bore you with the details of the planning but I will say that there is nothing like a Buddy Walk to make you swell with pride, tear up and realize that there are SO MANY people who love our buddies!

Our team name is Double The Love- totally fitting. Last year was our first walk and Casey and Connor were only 8 months old. This year I thought I was prepared for the rush of emotions I would experience. I wasn't.

The walk took place at Progressive Field- home of the Cleveland Indians. This stadium is built with the capacity to seat 43,345 fans. We didn't have nearly that many people but it seemed like we filled the stadium. The walk takes participants around the outside of the ballpark and then down onto the warning track where we got to walk all the way around the field. When we first stepped onto the field my breath caught in my chest, my heart grew 3 sizes and tears stung my eyes. I looked around this massive field and saw a sea of yellow and green (the buddies wore green) shirts. It was amazing- awe inspiring- touching.

The only way I can explain the feeling is to say it was like being home. When you are home you are loved. When you are home you feel safe and protected. When you are surrounded by approximately 5,000 people all celebrating and sharing in the joy of the life you live with a child with DS you are truly home. Everywhere you looked people were smiling and beaming while looking at the amazing people in their lives blessed with an extra 21st. Such a great feeling.

Casey and Connor are special. They are my miracle men. Even in the DS community they stick out. Having a child with DS is not all the uncommon. 1 in every 733 live births results in a child with DS. However, having twins who have DS is a much rarer occurrence happening about 1 time in a MILLION births. Because of this fact we get a lot of attention at events like the Buddy Walk. I don't mind. If anyone knows how incredibly blessed Matthew and I are- it's another parent of a child with Down syndrome. I met several people yesterday who knew me only as Casey and Connor's mom or the twin mom. I'm fine with this- I've been identified as much worse in my lifetime. If my entire identity centers around my sons my life is perfect.

Even though C&C are special there are some buddies we met that left me inspired and hopeful. Todd Eisinger was the Honorary Chair of the Buddy Walk. He is such an inspiration to me. He owns his own business, Inspires2Aspire, and won 4 medals in a Special Olympics swimming event in China. He entered 4 events and WON 4 medals- 2 Gold, 1 silver and 1 Bronze. He is super cool, amazingly nice and totally built. I want to hire him as my personal trainer. Todd's parents have always encouraged Todd to work hard and try his best and as a result Todd has done more in his life that many people who don't have DS have done- myself included. When I think of this young man I smile and think that the future of my sons looks like a bright and promising one.

Another buddy who left me smiling was Alex Simon. Alex is a section leader in his high school marching band- percussion section. He is handsome, charming and very funny. I had a great time palling around with Alex during some pre-Buddy Walk events. Alex was all too happy to pose for pictures with me and he entertained the walkers with some smooth dance moves during a great performance with his percussion buddies. Alex participates in a basketball league for people with disabilities and he helps manage his high school varsity b-ball team. He also does a mean Dougie, which I should admit I never knew how to do until he taught me.

At the end of the day, all the kids and adults I met on Saturday have special talents, charms and personalities. They are all inspiring- as are their families. Sometimes I do find myself worrying over the future and I think I am being silly. A great and special woman I worked with on the committee told me that no worries we have are silly. She is right. As a parent of 2 kids with DS I face a lot of uncertainties. I do worry whether people will treat my sons with dignity and respect. After being at the Buddy Walk I know they will be ok. I say this because there are thousands- quite literally THOUSANDS- of people who are looking out for all the miracle men and women. And again, I am left feeling like I am home. Safe and cozy, surrounded by people who love me and my sons unconditionally. And THAT is the true beauty of the Buddy Walk and the entire DS community- wherever you are- you're home.

Tuesday, August 16, 2011

You Put Good In- You Get Good Out.

I had no intention of writing today. The boys are asleep upstairs napping peacefully and snuggled with the hand made blankets my mom made them. When I look at them sleeping I feel so much love. They are so pure. They live to hug and be hugged. They live to laugh and love. They would never intentionally hurt another person. They are the absolute portrait of innocence.

We all begin exactly like this. We are all born into this world without the knowledge of how to hurt another, without a hard heart and spiked tongue waiting to hurl an insult. We are all born pure and kind. We all slept peacefully, unaware that there are people in the world who live solely to knock others down.

As I said, I had no intention of writing today. I was sitting at the dining room table, working on a craft project that I have been mulling over for a few weeks. I found myself thinking over a post I read on Facebook. It appeared in a group I am in with other mothers whose children are the same age as Casey and Connor. One of the women in the group posted about a bully and the bully's mother.

This situation started innocently enough. My friend posted this on her FB status: Special request to all kids & teenagers returning to school this month:If you see someone at school who is struggling to make friends, or being teased because he/she is different or shy or doesn't have the nicest clothes & shoes -- PLEASE STEP UP! Just say "hi," sit next to him or her at lunch, or at least smile at him or her in the hallway. You never know what that person might be facing outside of school. Your kindness could make a BIG difference in someone's life :-) Please share! It's a great status and a worthwhile reminder that every small thing you do can make a difference in someone's life. You never know whose day or whose life might be saved by your kindness.

After posting this message my friend was informed that there was another mother-NOT in our group- who had a response to this (Note: I will put the whole quote even though there are offensive words- be warned) "To all of you posting the be nice to kids and no bullying crap, go fuck yourselves, that is bs, there is no such thing as a bully and kids get punked because they are faggots or retards." Amazing sentiment right? The worst part of this is- SHE IS A MOTHER! Furthermore- her son is an accused bully himself.

Why? I know I ask this question so often in this blog but WHY? Why would you invest so much time in RUINING YOUR CHILD?? What are you teaching him by being a hateful, rude, ignorant person? To completely place blame on the children who are picked on by calling them faggots and retards? Really? This is the moral foundation you wish to raise your child on? No wonder our world is so screwed up.

I often wonder why kids are the way they are and there are 2 answers that I have come to accept. The first is- kids are selfish and socially unaware. They don't realize that their actions directly effect others. Children are, by their very nature, hedonistic little creatures. Babies live to be taken care of- their needs are all encompassing and that's all they know. Toddlers push the boundaries because they don't know better. Teenagers live ONLY for the moment and lack the ability to see too far into the future. If at these various stages in their lives they don't have a strong, caring adult there to guide them they would destroy one another without a second thought.

The second answer I accept is that If you put good IN to the kid you get good OUT of the kid. If everyday you fill your child with hateful words they will in turn become hateful. If while driving you are tailgating and calling the guy in front of you an a**hole and flipping them off your child absorbs this. If you call your neighbor stupid, lazy and fat- your child learns that it is acceptable to degrade and belittle someone. If you are constantly calling people names, making fun of their clothes, commenting on their weight, car or social status your child learns that, too. If you use words like fag, retard, nigger- your child will come to think this is acceptable.

There are people who will argue this point but they should know that they are wrong. Children learn what they see. Children are the future. Why are we poisoning the minds of the people who can eventually make a difference in the world? Why do we take them to movies that degrade and dehumanize? Why do we let them watch shows that teach messages of intolerance and cruelty? Why don't we as parents WAKE UP and realize that EVERYTHING OUR CHILDREN DO IS IN DIRECT RELATION TO HOW WE DO OUR JOBS AS PARENTS???? There are no more excuses.

I tell my children everyday I love them, that they can do ANYTHING they want to do and that they are amazing. When we are out I smile at people, wish them well, say please and thank you. When someone sneezes I say God bless you. When they see their daddy opening a door for me or for other women they are learning that men should be courteous and chivalrous. When I follow the speed limit and wear my seatbelt they learn the ways to be safe. When Matt and I have our occasional arguments they see that you can disagree and even get mad but you do it while still respecting your partner and that when it's over you kiss, hug and make up. Children don't need to be shielded from things. They need to be taught properly.

I want my children to know that there are people in the world who are different from themselves- that THEY are different from one another- and that it is perfectly acceptable. There are so many mixed messages out there. Some people want our children to be taught tolerance. Why? Why tolerance? Why teach them that you must TOLERATE differences- why not teach them to ACCEPT differences? I think acceptance is such a better message. Accept that some people are thin and some aren't. Accept some people are gay and some are straight. Accept it, understand it and treat everyone with dignity and respect.

There are too many mothers like that hateful one who thinks it fine to spew her message of hate and bigotry. There are too many people not willing to stand up to people like her. I am not one of those people. I would love a chance to talk to her. I would happily tell her that she is ruining her child by poisoning him against the world. She is sending the message that being cruel is perfectly normal. It's not. It's wrong. It's a disgusting message to send and she should be terribly ashamed of herself.

If you are a parent who strives to fill your child with good things- kudos to you. Thank you. YOU are the ones who will eventually make it a much nicer place. We as adults need to take a stand and teach children that cruelty is unacceptable and that it will not be tolerated in any form. We need to stand up and say that the blame lies not in the media or sites like facebook or with Hollywood movies- the blame lies with us. We failed somewhere along the way by remaining quiet or worse- by being rude bullies ourselves. It has to stop. I would like to think that once we get more people realizing that they are their child's most important teacher a difference can be made. Further, when that happens maybe we will all be able to sleep as peacefully as my beautiful little miracle men.

Sunday, August 14, 2011

Love, Life and Death

This has been a week that tested my emotional limits.

On August 9th, 2011, a baby girl named Adria passed away. She was 2 days shy of 11 months old. Adria was born with TGA(Transposition of the Great Arteries). In this condition, the main pulmonary and aortic arteries are reversed,so the blood/oxygen exchange does not happen properly,and they need to be reversed. During the surgery to reverse this her trachea was nicked. She ended up with drainage issues and infections her tiny body ultimately could not overcome. She left this world before she ever got to experience life.

I do not know Adria. I do not know her parents. I know this story through a mutual friend. Even though I do not know this family I ache for them. I can not imagine the emptiness that must be left in the wake of the loss of a child. I look at my sons and know that I can not begin to imagine life without them. I don't even want to try.

On August 11th, 2011, Raymond Oliver, 31, finally got to go to Heaven after a long and courageous battle with cancer. Raymond's wife, Yvvette is a good friend of mine. I met her through an online message board for pregnant women. has introduced me to many women I count among my closest friends though I have met none of them in real life. We shared our pregnancies, birth stories, sleepless nights. We went through the loss of infants to SIDS, miscarriages, divorce, fights with significant others, sickness, health and good and bad luck. Of all the experiences I have shared with this group of women, Yvvette's effects me most profoundly.

There are loves in life and then there are the GREAT loves. The GREAT loves are the ones that shape you and change you and leave you built up and stronger and better because they existed for you at all. This is the love that Yvvette and Raymond shared. They were both ultimately better because they were together.

When Raymond passed from this life he went holding Yvvette's hand with a final kiss on her lips. His heart stopped beating when their final kiss ended. He went peacefully, content with the knowledge that was loved, and Yvvette got the chance to say goodbye in a way that so many could only hope for.

This struck a chord with me because Matthew is my GREAT love. He makes me feel stronger, better, more capable. He has filled my life with love. We are not a romantic couple. There are not vases full of flowers or sappy cards- heck we have only been on a handful of dates since our sons were born nearly 2 years ago. But none of that matters. There is the everyday romance- holding hands on the couch after the boys are in bed, a kiss in the kitchen while rinsing dinner dishes, a wink that says I love you, doors held open for me and a favorite meal for him just because I know he likes it. When I am with Matt I am safe and content. When I think of my life with my husband I realize that there is nowhere in the world I would rather be than with him. He is everything I could hope for and everything I have ever wanted.

The very idea of losing Matthew horrifies me. We recently wrote our wills and I pray that I never need to open those documents again to go about following last wishes. I hope that when the time comes that we are separated by death it can happen with a kiss and a held hand. I also pray that it is a day long, long into our future.

And finally, last night we attended the wedding of my cousin Lauren and her new husband Mike. They are a cute couple. Watching Lauren walk down the aisle arm in arm with her father I was awed by the radiance of her smile. She has always been a beautiful girl but last night the word beautiful was completely insufficient for her. She was glowing with happiness. She deserves it. I hope that the beginning of this new life together will show them both that they have chosen their GREAT loves.


Thursday, August 11, 2011


Matt and I donated blood today at a Red Cross blood drive and I think this is a simple yet vitally important thing you can do to make a difference. We always take the boys with us when we donate and we take turns sitting with them while the other is donating.

The woman who took my blood today and I were talking about Casey and Connor who are my favorite conversation topic. I said something about them having Down syndrome and she looked shocked. Then she looked sad. Then she looked like she wanted to apologize.

I smiled and said, "It's rare to have twins with DS- about 1 in 1 million births but they are the most amazing blessings I never knew I wanted or needed."

She is originally from Lebanon. She told me in her country women hide the fact that their child has DS. They don't take them out, they are ashamed. She asked if C&C go to a special school. I told her we plan on enrolling them in a regular pre-school and then in a mainstream school and she looked amazed. I went on to tell her that Casey and Connor have a FaceBook fan page (Are YOU a fan yet? I'll post a link at the bottom of this entry) and that they are going to be in the newspaper soon. She told me that I am an amazing mother. I told her that *I* am the lucky one.

It always surprises me that some people really believe that Down syndrome is something shameful or awful. As wrong as America gets it on some issues with those who have disabilities- and we *do* get it REALLY wrong sometimes- see Hollywood you Suck for reference- America is so far ahead of the rest of the world when it comes to Down syndrome.

A family I have been blessed to meet because of C&C have spent the better part of a year trying to raise the money to adopt an orphan in eastern Europe with DS. Max was left to an orphanage and later transferred to an institution just because he got a bonus 21st. The Marks family worked their tails off trying to raise the ridiculous amount of money to bring this angel home to his never met but much deserved family here in the USA. In a heart breaking turn of events they found out that Max's biological family decided to reclaim him after 6 years of letting him go unhugged, uncelebrated and unstimulated for 6 years. He was *not* unloved because Debbie and Paul and his siblings here in Ohio loved him as much as anyone has ever loved a child or a brother.

Children with Down syndrome are tossed aside and treated without dignity or respect in many countries. This is a fact that both sickens and saddens me. I can not even begin to imagine my life without my miracle men. I would not be the person I am today if it were not for my sons. More importantly, I continually strive to be better, to do more, to change and grow because I want to be a mother that they can be proud of- that they *should* be proud of.

It is my mission in life to change how people view DS. I will spend the remainder of my life letting people know that there are far worse things than having a child with a disability or an extra chromosome. My life is better than I could have ever imagined it would be. I think I changed someone's mind today. Maybe she will go and tell someone else about my miracle men and the love I feel for my sons and the admiration I have for them will continue to spread.

One day maybe the love and hope will spread faster than the fear and ignorance. Maybe one day people will be shocked when they hear that someone doesn't value their child with DS as an important member of society.

That is the true miracle of Casey and Connor. They teach people how to love. They bring out goodness and decency. They, and all those with extra 21sts, are the sparks that will ignite the fire that will set the world ablaze with love.

They are gifts.

If you would like to help a child with DS in need of a forever home you can visit

If you would like to be a fan of Casey and Connor on Facebook you can visit their page at

Tuesday, August 9, 2011

Time for action

I have written before about how I feel drawn to do something big- to change the way the world sees Down syndrome and other disabilities. I keep going back to this and I can't help but think that I just need to start.

So, here it is. My very first project.

I am going to begin compiling a list of every movie that uses the R word in some derogatory fashion. I am then going to find the writers, directors, actors and film company that had anything to do with the project. These will go into a database which I intend to publish here on The 3rd 21st monthly. I will include as many contact links, addresses, and phone numbers that I can. I will then write letters to each and every person that I can expressing my disgust with the way that people with disabilities are represented in film and television.

How can YOU help? There are a few ways.

1. When you see a film or tv show that uses the R word or is otherwise demeaning to people with disabilities you can email me at and I'll add it to the database. If possible include the approximate time in the film or show so that I can easily verify the information.

2. When the list is published monthly you can take the time to copy down the addresses and write to these companies to let them know we will no longer stand for hate speech, cruelty and disrespect. Let them know they will not be getting your money and that you are going to spread the word against such films and shows.

3. You can share this blog with your friends. You can encourage them to follow the blog, re post it, Facebook it, twitter it- any way that we can garner more support is huge. No company is going to be intimidated by a Blog with only 49 followers- if this is going to work it needs to go big.

That's all I have for now. Let's spread the word and get this party going.


If you were outraged by the Univeral Studios movie The Change Up you can contact them at:

Main Line of Universal to call and ask for contacts below:
(818) 777-1000

Nikki Rocco
President of Distribution
Universal Pictures

Adam Fogelson
Chairman, Universal Pictures

or take action by tweeting the following:

@UniversalPics thinks bigotry is acceptable. I think they are wrong. Help me remove the #Rword from #TheChangeUp.


Saturday, August 6, 2011

Hollywood- You SUCK!

I can not begin to explain how much I hate the word retarded and how much more I hate the word retard. I can not put into words the boiling in my blood, the quickening to my pulse, the breaking of my heart. I can not tell a person who doesn't have a child or children with a disability WHY those words are SO wrong but they are. I have said it before and I will say it again- those words carry physical weight- and they hurt.

I used to like actor Ryan Reynolds. I used to think he was a funny guy- maybe even cute. Now I think he is just an ignorant jerk who makes money demeaning and belittling people like my miracle men.

In the movie "The Change Up" with Jason Bateman, Ryan's character makes reference to Jason's movie twins asking if one is retarded and commenting the other looks a little bit downsy. Nice. Classy. Completely unnecessary.

This is not the first movie that Ryan Reynolds has been in that uses the "R" word. In every movie he is in you are almost guaranteed to hear it. I've learned this the hard way. In one movie, Waiting, one of the characters actually says, "That's like being the smartest kid with Down syndrome." So sick.

Why? I ask this question often when I hear things like this. WHY? What purpose does that word in a movie serve? None. It serves no person but to show that the person saying it has no sense of right and wrong. And before someone tries to tell me that they are actors and they are being paid to play a role I say, "NO! They are WRONG!"

Just because you are taking a paycheck does not mean you can't stand for something that is good and right and just plain decent. Just because you are being paid does not mean you can't stand up and say, 'this is wrong.' Just because you are taking a paycheck does not mean that you can't set a better example for the millions of people who look up to you, want to be like you, wish they were you. I would LOVE to be some famous big shot so I could use the platform of fame to EDUCATE people.

There is a 90% rate of abortion for babies diagnosed prenatally with DS. People like Ryan Reynolds and those who write the crappy comedies he is in are part of that problem. Shame on Hollywood. Shame on actors who lack basic decency to defend those who can not defend themselves. Shame on them for refusing to use the word retarded or retard in movies. Just shame on them for being spineless, uneducated, uncaring jerks.

And just for the record- my miracle men are a blessing. They are the most amazing blessing I could imagine. Someone like Ryan Reynolds should *BE* so lucky to have kids like mine.