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. WhatToExpect.com 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.
Cheers.
Sunday, August 14, 2011
Thursday, August 11, 2011
Sparks
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 http://reecesrainbow.org/
If you would like to be a fan of Casey and Connor on Facebook you can visit their page at https://www.facebook.com/pages/Casey-and-Connor/188134334562942
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 http://reecesrainbow.org/
If you would like to be a fan of Casey and Connor on Facebook you can visit their page at https://www.facebook.com/pages/Casey-and-Connor/188134334562942
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 the3rd21st@yahoo.com 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.
EDITED TO ADD THE FOLLOWING:
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
Nikki.Rocco@nbcuni.com
Adam Fogelson
Chairman, Universal Pictures
Adam.Fogelson@nbcuni.com
or take action by tweeting the following:
@UniversalPics thinks bigotry is acceptable. I think they are wrong. Help me remove the #Rword from #TheChangeUp. http://j.mp/oEIPKP
Thanks!
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 the3rd21st@yahoo.com 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.
EDITED TO ADD THE FOLLOWING:
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
Nikki.Rocco@nbcuni.com
Adam Fogelson
Chairman, Universal Pictures
Adam.Fogelson@nbcuni.com
or take action by tweeting the following:
@UniversalPics thinks bigotry is acceptable. I think they are wrong. Help me remove the #Rword from #TheChangeUp. http://j.mp/oEIPKP
Thanks!
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.
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.
Sunday, July 31, 2011
I am having a really rough night.
For the last almost 20 months we have held and rocked our boys to sleep. The last few weeks it has become apparent that this is no longer working. We decided to try a new method for bedtime. We held and snuggled the boys for about 30 minutes and then we laid them down, kissed them on their sweet little heads and walked away.
Casey has been crying for what seems like a lifetime but has really only been about 15 minutes. I feel like the worst mother ever. I want so badly to run up and get him but he needs to learn to get to sleep on his own or he will be 35 and cuddled on my lap for a nap.
This is so hard. I m not sure who has cried more- me or him. I think me.
Awful.
I want the guys to be independent. I don't know if this is the way to go about it but it's the road we are traveling now.
I hate this road.
For the last almost 20 months we have held and rocked our boys to sleep. The last few weeks it has become apparent that this is no longer working. We decided to try a new method for bedtime. We held and snuggled the boys for about 30 minutes and then we laid them down, kissed them on their sweet little heads and walked away.
Casey has been crying for what seems like a lifetime but has really only been about 15 minutes. I feel like the worst mother ever. I want so badly to run up and get him but he needs to learn to get to sleep on his own or he will be 35 and cuddled on my lap for a nap.
This is so hard. I m not sure who has cried more- me or him. I think me.
Awful.
I want the guys to be independent. I don't know if this is the way to go about it but it's the road we are traveling now.
I hate this road.
Thursday, July 28, 2011
You may say that I'm a dreamer-
I was reading a blog post by an amazing woman who also happens to have a little man with a bonus 21st and in it she was talking about some questions on a form from a pediatrician she is considering.
The question: What are your dreams for your child. This got me thinking.
I have many dreams for Casey and Connor. Before I knew that the boys have DS I had the typical dreams- athletic, honor students, well liked, caring, married to wonderful women and lots of grand-babies for me to spoil down the road. Just the basics. =)
I had to go through a period where I changed the dreams I have for them.
I dream that Casey and Connor will speak AND be heard. I dream that their voices will change the way people see Down syndrome. I dream that they can change the world with their words of love and hope. I also dream of hearing the words, "I love you, mommy."
I dream that Casey and Connor will learn to walk and that the steps they take lead them on a journey of beauty and fulfillment. I want them to walk into the future with their heads held high and I want them to walk with purpose. I dream they will walk with God and that they will inspire others to walk gently but with purpose. I also dream of the day they walk to me and hug me or just hold my hand as we walk together.
I dream that Casey and Connor will become students of life. I want them to understand the things that seem to elude so many. I want them to understand that things are not always what they seem. Some things that seem bad are beautiful and some things that seem perfect are ugly. I dream they will learn that judging before understanding is the wrong way to go through life.
I dream that Casey and Connor will love. I dream they will love fully and without reservation. I dream they will love another and themselves and that they will be loved in turn as much as their parents love them now. I dream they will find someone who makes them feel special and important and who supports their dreams and sees the perfection in them that I see every time I look at those beautiful little faces. I want them to have the love I feel for their father.
I dream that Casey and Connor will be given every opportunity in life to be whatever it is they wish to be. I dream that they are given the chance to try anything. I dream they are seen as equals and are treated as their typical peers are treated. If they want to be karate kids who paint and sing and act and dance all while playing football and bowling I dream they are able to do so. If Connor wants to become a hair stylist and Casey wishes to become the first dentist with Down syndrome then I will support them.
I dream that Casey and Connor will become dreamers. I want for them the opportunity to dream their own dreams- to look at the world around them and decide what it is they want out of life. I want them to dream big and to reach beyond any limitations and to achieve their dreams.
I dream that Casey and Connor will always be my miracle men and that they will one day appreciate the love this mother has for her sons- though they will never fully understand the depth of that love. I hope they always know that whatever they do or dream is perfectly fine with me so long as they fulfill the biggest and most important dream I have for them- If nothing else I only dream that they are happy.
The question: What are your dreams for your child. This got me thinking.
I have many dreams for Casey and Connor. Before I knew that the boys have DS I had the typical dreams- athletic, honor students, well liked, caring, married to wonderful women and lots of grand-babies for me to spoil down the road. Just the basics. =)
I had to go through a period where I changed the dreams I have for them.
I dream that Casey and Connor will speak AND be heard. I dream that their voices will change the way people see Down syndrome. I dream that they can change the world with their words of love and hope. I also dream of hearing the words, "I love you, mommy."
I dream that Casey and Connor will learn to walk and that the steps they take lead them on a journey of beauty and fulfillment. I want them to walk into the future with their heads held high and I want them to walk with purpose. I dream they will walk with God and that they will inspire others to walk gently but with purpose. I also dream of the day they walk to me and hug me or just hold my hand as we walk together.
I dream that Casey and Connor will become students of life. I want them to understand the things that seem to elude so many. I want them to understand that things are not always what they seem. Some things that seem bad are beautiful and some things that seem perfect are ugly. I dream they will learn that judging before understanding is the wrong way to go through life.
I dream that Casey and Connor will love. I dream they will love fully and without reservation. I dream they will love another and themselves and that they will be loved in turn as much as their parents love them now. I dream they will find someone who makes them feel special and important and who supports their dreams and sees the perfection in them that I see every time I look at those beautiful little faces. I want them to have the love I feel for their father.
I dream that Casey and Connor will be given every opportunity in life to be whatever it is they wish to be. I dream that they are given the chance to try anything. I dream they are seen as equals and are treated as their typical peers are treated. If they want to be karate kids who paint and sing and act and dance all while playing football and bowling I dream they are able to do so. If Connor wants to become a hair stylist and Casey wishes to become the first dentist with Down syndrome then I will support them.
I dream that Casey and Connor will become dreamers. I want for them the opportunity to dream their own dreams- to look at the world around them and decide what it is they want out of life. I want them to dream big and to reach beyond any limitations and to achieve their dreams.
I dream that Casey and Connor will always be my miracle men and that they will one day appreciate the love this mother has for her sons- though they will never fully understand the depth of that love. I hope they always know that whatever they do or dream is perfectly fine with me so long as they fulfill the biggest and most important dream I have for them- If nothing else I only dream that they are happy.
Wednesday, May 18, 2011
New hope, New Friends
There are so many days where the thought that my sons have Down syndrome never crosses my mind. Honestly. Those are the days when we are so busy living life, playing, reading and loving that I spare zero thoughts on their extra 21sts.
There was a time when the boys were first born that I would never have believed I wouldn't think of their diagnosis. I would have never believed someone telling me that eventually all I would see would be my sons. I was wrong. Again. My, my how often that happens.
Those days when I forget that my sons are slightly different than all my neighbors' kids are fun. I just enjoy every moment with the boys and soak up all the hugs, kisses and hair pulls they so love to share. That's NOT to say I don't enjoy EVERY SINGLE DAY with my boys- I do. Some are just more challenging than others and more importantly some are more fulfilling than others.
Which is why I am writing today...
Sometimes it seems that ALL that I think about is Down syndrome. And truthfully, the majority of it is super positive. I really don't have days where I am down about the future or present. I am so blessed by my children it would be ridiculous to be saddened by anything about them or the amazing community I find myself a part of.
The last two or three days have been FULL of thoughts of DS. First, I read a BEAUTIFUL story about Austin and Christi- a wonderfully inspiring couple with DS that are married and thriving. Their story gave me so much hope and joy.
Next, was a video done by the National Down Syndrome Congress and featuring adult self-advocates talking about their lives. These adults made me look forward to the future and KNOW that Casey and Connor are living in a time when they have more opportunities for success than ever before. And it also made me realize that my role in this journey is to keep spreading the word that people with DS can do ANYTHING. There was one young man on this video who was proud of being on the Dean's list in college- something I could never claim for myself. Incredible.
And today- I was looking through the stats on my blog wondering where the most traffic for it is coming from. I found a link to BabyCenter.com where there were some women discussing my blog. I must say- they made me cry. These women made me feel like I am doing something right- I felt loved by people I don't know, have never met or spoken to and they touched me deeply. To these ladies I say "thank you" and I ask that you keep spreading the word about my little blog.
There are big plans always brewing in my head. I am always trying to figure out how to make the biggest impact in the lives of my children and in the lives of others. It is something I think I feel led to do and consequently I am always thinking of things that might work. I feel like there are some big things coming. I have talked before about the Casey and Connor project and how I want to bring people together to make change happen in the lives of people with DS or in the lives of those of us who love someone with DS. I still want that. I am going to spend the next few weeks really working hard to get something together for this. I have a lot of research to do but I feel like the ideas are coming quickly and if I don't move forward with something I may lose my mind. If only there were more hours in the day.
Before I go I want to leave you with this thought- "I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~Edward Everett Hale. What can YOU do to make this world a little better??
Have a beautiful and blessed day!
Meghan
There was a time when the boys were first born that I would never have believed I wouldn't think of their diagnosis. I would have never believed someone telling me that eventually all I would see would be my sons. I was wrong. Again. My, my how often that happens.
Those days when I forget that my sons are slightly different than all my neighbors' kids are fun. I just enjoy every moment with the boys and soak up all the hugs, kisses and hair pulls they so love to share. That's NOT to say I don't enjoy EVERY SINGLE DAY with my boys- I do. Some are just more challenging than others and more importantly some are more fulfilling than others.
Which is why I am writing today...
Sometimes it seems that ALL that I think about is Down syndrome. And truthfully, the majority of it is super positive. I really don't have days where I am down about the future or present. I am so blessed by my children it would be ridiculous to be saddened by anything about them or the amazing community I find myself a part of.
The last two or three days have been FULL of thoughts of DS. First, I read a BEAUTIFUL story about Austin and Christi- a wonderfully inspiring couple with DS that are married and thriving. Their story gave me so much hope and joy.
Next, was a video done by the National Down Syndrome Congress and featuring adult self-advocates talking about their lives. These adults made me look forward to the future and KNOW that Casey and Connor are living in a time when they have more opportunities for success than ever before. And it also made me realize that my role in this journey is to keep spreading the word that people with DS can do ANYTHING. There was one young man on this video who was proud of being on the Dean's list in college- something I could never claim for myself. Incredible.
And today- I was looking through the stats on my blog wondering where the most traffic for it is coming from. I found a link to BabyCenter.com where there were some women discussing my blog. I must say- they made me cry. These women made me feel like I am doing something right- I felt loved by people I don't know, have never met or spoken to and they touched me deeply. To these ladies I say "thank you" and I ask that you keep spreading the word about my little blog.
There are big plans always brewing in my head. I am always trying to figure out how to make the biggest impact in the lives of my children and in the lives of others. It is something I think I feel led to do and consequently I am always thinking of things that might work. I feel like there are some big things coming. I have talked before about the Casey and Connor project and how I want to bring people together to make change happen in the lives of people with DS or in the lives of those of us who love someone with DS. I still want that. I am going to spend the next few weeks really working hard to get something together for this. I have a lot of research to do but I feel like the ideas are coming quickly and if I don't move forward with something I may lose my mind. If only there were more hours in the day.
Before I go I want to leave you with this thought- "I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~Edward Everett Hale. What can YOU do to make this world a little better??
Have a beautiful and blessed day!
Meghan
Saturday, May 14, 2011
It's been too long
Life has been really busy and I have been really bad at updating this blog. I need to make it a point to get here at least once a week.
Casey and Connor are doing great. Casey finally got a new tooth which gives him 5 and Connor still just has 4 but I know they are both getting more soon.
The guys have also discovered the joys of climbing stairs. They can't stand or walk yet but they can get upstairs for bath time in about 2 minutes. This was an exciting milestone as my back is really starting to feel the strain of having 17 month old boys that don't walk. I will be looking for a good chiropractor soon I think. I know that when they are finally walking I will miss these days where I get to hold them so often and I will wonder why I ever wanted them to get a little more independent but I guess that is just part of this journey.
We have also started a new session of swimming lessons. They meet on Mondays and Wednesdays just for this month but it is a great time for all 4 of us. Matt and I laughed so much the other day watching Casey splash and kick his legs and watching Connor go after his floating block that I know MY face hurt afterward. I love these swimming lessons because the boys get the freedom to move so much without gravity weighing them down making it harder. Casey kicked his legs for about 15 minutes straight and I know this would have been a huge challenge for him on dry land. They both continue to get stronger everyday.
Casey has also mastered the art of peek-a-boo. When we say "Where's Casey?" he throws his hands up and over his eyes. It makes me laugh every time. He does it too fast sometimes and covers his ears or his cheeks but that just adds to the charm of the game. Connor is starting to play as well though more often than not he covers his mouth. So adorable.
Both the guys are giving high five now and they blow kisses. Occasionally Casey will wave though he waves with his fingers in towards himself. Funny little men.
It has been a busy few month with all their new skills, tricks and games and we are enjoying every moment of life with our Miracle Men.
If you are on Facebook Casey and Connor have a fan page now. I am using it to share facts about DS and to help raise a little more awareness about the amazing community we are proud to a part of. Just search for Casey and Connor!
Have a blessed day and thanks for joining us on the journey!
Casey and Connor are doing great. Casey finally got a new tooth which gives him 5 and Connor still just has 4 but I know they are both getting more soon.
The guys have also discovered the joys of climbing stairs. They can't stand or walk yet but they can get upstairs for bath time in about 2 minutes. This was an exciting milestone as my back is really starting to feel the strain of having 17 month old boys that don't walk. I will be looking for a good chiropractor soon I think. I know that when they are finally walking I will miss these days where I get to hold them so often and I will wonder why I ever wanted them to get a little more independent but I guess that is just part of this journey.
We have also started a new session of swimming lessons. They meet on Mondays and Wednesdays just for this month but it is a great time for all 4 of us. Matt and I laughed so much the other day watching Casey splash and kick his legs and watching Connor go after his floating block that I know MY face hurt afterward. I love these swimming lessons because the boys get the freedom to move so much without gravity weighing them down making it harder. Casey kicked his legs for about 15 minutes straight and I know this would have been a huge challenge for him on dry land. They both continue to get stronger everyday.
Casey has also mastered the art of peek-a-boo. When we say "Where's Casey?" he throws his hands up and over his eyes. It makes me laugh every time. He does it too fast sometimes and covers his ears or his cheeks but that just adds to the charm of the game. Connor is starting to play as well though more often than not he covers his mouth. So adorable.
Both the guys are giving high five now and they blow kisses. Occasionally Casey will wave though he waves with his fingers in towards himself. Funny little men.
It has been a busy few month with all their new skills, tricks and games and we are enjoying every moment of life with our Miracle Men.
If you are on Facebook Casey and Connor have a fan page now. I am using it to share facts about DS and to help raise a little more awareness about the amazing community we are proud to a part of. Just search for Casey and Connor!
Have a blessed day and thanks for joining us on the journey!
Tuesday, March 29, 2011
God knows... even when I don't.
If there is one thing I have learned in my life it is that God has a plan. He does not clue me in to said plan and I just get to bump along and enjoy the ride. And enjoy it I do. Mostly.
The boys are teething right now.
My heart hurts for them because they are miserable and there is nothing I can do to take away the ache in their mouths. They smile and play like usual but they are a little more sensitive and there has been more crying than is typical around here. Poor little men.
I got off-track. I call C&C my little miracle men and I do so because they have brought me so much joy and they have really changed everything about me. They did the work of God in my life. I went back to church and I work on my faith every day. I pray with renewed hope and belief. I am more thankful and I constantly find myself in awe of the way that God works in my life. Enter Lindsey Scholz.
On March 23, 2011, I received a sweet, heart warming message on FaceBook from Lindsey, a gifted photographer, offering my family a portrait session. See, Lindsey realized all on her own what I have been preaching for almost 16 months- babies with Down syndrome are just plain GORGEOUS! That and she has a calling to spread the word and raise awareness that Ds is beautiful. Right she is!
I was blessed again this evening when I actually got to speak to her on the phone about coming to Columbus and doing this photo shoot and I am more excited about this than I can properly convey. Lindsey has this incredible spirit about her. I am really looking forward to meeting her and watching her work. You can view her photos on Facebook if you search for Lindsey Scholz Photography and you will see what I did when I first looked at her work- TALENT!
God had a plan when he gave Matthew and me Casey and Connor. He had a plan when they each got their bonus chromosomes and He has a plan every time I meet someone new. My mission in life is to make sure my sons get every opportunity they can and should. Meeting someone like Lindsey who is a stranger to me but who also wishes to raise awareness is a dream come true. Every time I think of the kindness and acceptance she has already shown my sons I get misty in the eyes. I know already she is an incredible person. God knew it before I did. Today is just another day when I am all too willing to enjoy the ride He has me on.
Life is sweet when you have
Double the love...
Goodnight.
The boys are teething right now.
My heart hurts for them because they are miserable and there is nothing I can do to take away the ache in their mouths. They smile and play like usual but they are a little more sensitive and there has been more crying than is typical around here. Poor little men.
I got off-track. I call C&C my little miracle men and I do so because they have brought me so much joy and they have really changed everything about me. They did the work of God in my life. I went back to church and I work on my faith every day. I pray with renewed hope and belief. I am more thankful and I constantly find myself in awe of the way that God works in my life. Enter Lindsey Scholz.
On March 23, 2011, I received a sweet, heart warming message on FaceBook from Lindsey, a gifted photographer, offering my family a portrait session. See, Lindsey realized all on her own what I have been preaching for almost 16 months- babies with Down syndrome are just plain GORGEOUS! That and she has a calling to spread the word and raise awareness that Ds is beautiful. Right she is!
I was blessed again this evening when I actually got to speak to her on the phone about coming to Columbus and doing this photo shoot and I am more excited about this than I can properly convey. Lindsey has this incredible spirit about her. I am really looking forward to meeting her and watching her work. You can view her photos on Facebook if you search for Lindsey Scholz Photography and you will see what I did when I first looked at her work- TALENT!
God had a plan when he gave Matthew and me Casey and Connor. He had a plan when they each got their bonus chromosomes and He has a plan every time I meet someone new. My mission in life is to make sure my sons get every opportunity they can and should. Meeting someone like Lindsey who is a stranger to me but who also wishes to raise awareness is a dream come true. Every time I think of the kindness and acceptance she has already shown my sons I get misty in the eyes. I know already she is an incredible person. God knew it before I did. Today is just another day when I am all too willing to enjoy the ride He has me on.
Life is sweet when you have
Double the love...
Goodnight.
Tuesday, March 22, 2011
Take that DOC!
This article is amazing! I wrote my own commentary at the bottom and it sums up very well how I feel about this. PLEASE- if this touches you in any way share it- including what I wrote at the bottom.-Meghan
I'm Sorry, Your Baby is Normal
by Bob Lincoln
Thursday, 6 February 2003
Warning: this article is intended to make a serious point in an interesting way. It is not meant to offend anyone, except possibly doctors.
--------------------------------------------------
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.
If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.
Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.
I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.
After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.
They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.
Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.
Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.
I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.
Termination is an option.
Shall I book an appointment?
...from a parent who received a diagnosis rather like this.
Note from Meghan Wilkinson: Imagine if you were told all these things about YOUR baby. These are the things parents of children with DS are told all the time. Especially the part about termination. Think about this. REALLY take a moment to process that and THINK about what it would mean to you to hear these words. AWFUL right? WHY is it OK for doctors to frighten the parents of children with DS but they would never dream of saying these things to a parent pf a typical child? How many of the people serving life sentences in prison have Down syndrome? How many rapists, murderers, child molesters, crooked politicians, dictators, terrorists, drug addicts, wife beaters, alcoholics, drunk drivers, serial killers, kidnappers, perverts, slackers have an extra 21st chromosome? WHY is it considered a burden by so many to have a child with DS when the only thing that is GUARANTEED with a "typical" child is that they have potential. Look at it like this. I was a typical child and look what I am now. I am a stay at home mom who failed out of college because I chose to drink mass quantities of alcohol and not go to class. I then became a job hopping, debt accruing slack ass. I continued to drink and smoke and never lived up to ANY of my POTENTIAL. That was all true until I gave birth to MY MIRACLES and now I am trying to live up to the potential I had when I was born. Do you think that if the doctors knew what I would have done in my life to this point they would have suggested termination? My point is- no one's future is set in stone. I don't care how many chromosomes you have. You can have 46 like science says is perfect and DO NOTHING WITH YOUR LIFE. WAKE UP DOCTORS- PERFECTION is in the eye of the beholder and THIS mother is NOT going to stand for your insensitivity and biases any more. I'M FIGHTING BACK. The 90%+ abortion rate for babies with DS disgusts me and IT IS MOSTLY YOUR FAULT! QUIT SCARING women into thinking their lives will be forever ruined if their baby has DS. QUIT TAKING AWAY HOPE! God doesn't make mistakes- he does seem to make a whole lot of jerks that wear white coats, though.
I'm Sorry, Your Baby is Normal
by Bob Lincoln
Thursday, 6 February 2003
Warning: this article is intended to make a serious point in an interesting way. It is not meant to offend anyone, except possibly doctors.
--------------------------------------------------
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.
If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.
Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.
I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.
After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.
They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.
Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.
Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.
I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.
Termination is an option.
Shall I book an appointment?
...from a parent who received a diagnosis rather like this.
Note from Meghan Wilkinson: Imagine if you were told all these things about YOUR baby. These are the things parents of children with DS are told all the time. Especially the part about termination. Think about this. REALLY take a moment to process that and THINK about what it would mean to you to hear these words. AWFUL right? WHY is it OK for doctors to frighten the parents of children with DS but they would never dream of saying these things to a parent pf a typical child? How many of the people serving life sentences in prison have Down syndrome? How many rapists, murderers, child molesters, crooked politicians, dictators, terrorists, drug addicts, wife beaters, alcoholics, drunk drivers, serial killers, kidnappers, perverts, slackers have an extra 21st chromosome? WHY is it considered a burden by so many to have a child with DS when the only thing that is GUARANTEED with a "typical" child is that they have potential. Look at it like this. I was a typical child and look what I am now. I am a stay at home mom who failed out of college because I chose to drink mass quantities of alcohol and not go to class. I then became a job hopping, debt accruing slack ass. I continued to drink and smoke and never lived up to ANY of my POTENTIAL. That was all true until I gave birth to MY MIRACLES and now I am trying to live up to the potential I had when I was born. Do you think that if the doctors knew what I would have done in my life to this point they would have suggested termination? My point is- no one's future is set in stone. I don't care how many chromosomes you have. You can have 46 like science says is perfect and DO NOTHING WITH YOUR LIFE. WAKE UP DOCTORS- PERFECTION is in the eye of the beholder and THIS mother is NOT going to stand for your insensitivity and biases any more. I'M FIGHTING BACK. The 90%+ abortion rate for babies with DS disgusts me and IT IS MOSTLY YOUR FAULT! QUIT SCARING women into thinking their lives will be forever ruined if their baby has DS. QUIT TAKING AWAY HOPE! God doesn't make mistakes- he does seem to make a whole lot of jerks that wear white coats, though.
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