Today I was given an incredible opportunity to stand before the congregation of my church and share my faith story. It was such a blessing to be able to share how Casey and Connor have changed my life and how much God has blessed me with.
The following is the exact talk I gave.
..............................................................................
A few weeks ago Pastor Katie asked me if I would be willing to come up here and share my faith story with all of you. Since such a HUGE part of my story is about my sons I jumped at the chance because to be honest, there is nothing in the world I like talking about more than Casey and Connor!
I guess like a lot people my faith story has a few parts. When I was younger I went to church with my mom when it was something I felt like I “should” do- I went on the major holidays but never more than that. I was never active in the church though I maintained a close, though quiet, personal relationship with God. I would pray and talk to God. I would lean on Him when things got challenging or when I felt overwhelmed with being a teenager and all the drama and angst that goes with those years.
When I got to college, my roommate was a girl from South Dakota. Her parents were both Christian ministers in their small south Dakota town and she and I would have some interesting discussions but I always felt like I needed more so I also explored other religious schools of thought and different philosophies. I still maintained my relationship with God and He was always there- like a best friend and I found comfort in Him and in my faith.
Throughout the years I went on in much the same fashion. Checking in with God daily but not making any more of a commitment to my faith or to the church. I was content in my spiritual life to an extent but maybe felt there was something lacking.
Things really changed for me when my sons were born.
Before I get to that part of my story I should tell you the back story.
I met my husband in 2008, while playing on a coed sand volleyball team at a bowling alley. I was brought to the team by a mutual friend. At first I did not like Matthew. And he will tell you that the feeling was mutual. Even though I didn’t like him there was something about him that made me keep looking.
After a few months of playing volleyball or whole team went out one night and it was that night that made me think there was more to him than I had previously thought. Matthew and I went out a few days later for lunch and after that lunch I called my mom and told I was going to marry him. There was no question.
2 and a half months later I did just that. I feel like I was led to Matthew and that God definitely pushed me toward him. If I had listened to my initial impressions I would have missed out on the best decision I ever made.
God knew.
I was well aware that my husband was not overly interested in having children. I loved him though and was willing to live my life without kids if it meant I could be with him. As much as I knew where he stood on the issue I would pray everyday to God and say, :If we are meant to have children, just let it happen. If that is your plan, I trust you.” In April 2009, 6 and a half months after we were married I found out I was pregnant.
God had a plan.
Matthew and I were ecstatic about our baby and we went to my first doctor’s appointment excited to see our first ultrasound. It was then that we found out I was carrying twins. It was also the day we told the doctor that we would be declining all prenatal testing explaining to her that nothing they found in a test would make us terminate the pregnancy. She was understanding and supportive.
Because I was carrying 2 babies I was given several ultrasounds so they could monitor their growth. Every time- everything looked perfect. We were ready to meet our sons.
At 36 weeks and 2 days into my pregnancy I was taken in for an emergency c-section. There was very little fluid around the babies and Connor was not moving much. I prayed that everything would be ok and I felt comforted by God.
After the boys were born I wanted nothing more than to see them, to meet them and to know how much they weighed. It was not until I was in the recovery room that anyone would tell me anything.
I was approached by a sweet and soft spoken doctor and she told me that my sons were doing well. She said they were adorable. Then she told me that she strongly suspected that they both had Down syndrome.
I will never forget that moment. I can honestly tell you it was the worst moment of my life. Every plan I had ever made for my sons went out the window, every dream- gone in that second. I was devastated but managed to get out the word “ok”.
At that point a nurse wheeled in my boys in a tiny, clear plastic isolet and I fell madly in love. I looked at those little faces and kissed their tiny heads and knew it would be ok.
When I finally got a moment alone I did break down. I remember clearly looking up at the ceiling and thinking “what are you THINKING, God? I can’t do this! YOU MADE A MISTAKE! I am not strong enough for this. PLEASE, PLEASE, PLEASE let them be wrong.” I reasoned with him that I was only 29. I reasoned that there was no family history of Down syndrome. I begged and pleaded and bargained. A few days later it was confirmed.
They were not wrong.
And, once again, God had a plan.
It was Mathew that pulled me up when I was so down. He looked at me and put his arm around my shoulders as I sobbed. He said to me, ‘Hun, they are perfect.’ He said exactly the thing I needed to hear and he said it with such love and such conviction that I felt this huge weight lifted from me and I knew he was right. They were perfect.
Once again, God knew. He knew that Matthew was the right husband for me. Matthew’s gentle spirit and deep love for our boys was exactly what I needed to view our boys as the gifts that they were and that is how we both view them to this day. As gifts- never a burden. NEVER a mistake. NEVER less than perfect.
It has been nearly two years since Casey and Connor were born. In those 2 years I have prayed every day and thanked God for my boys, my husband, my family. And in the last year and a half I have added thanks for my FAITH and my CHURCH.
See, after the guys were born it became VERY important to me to belong to a church. I wanted the boys to have a foundation of faith in their lives so that if and when things got difficult for them- they would have a place to turn. It also became very important to me to have a place to go where I could say THANKS to God every week, where I could have a sense of community and belonging in what was a scary world for me at the time.
Since becoming a member of Clague RD UCC I have explored my faith in so many ways. I am closer to God now than I ever was and I find that I listen more closely when I feel led to do things or when people need someone to reach out to them. My relationship with God is stronger than ever and I feel more connected to my faith. I no longer feel like I am just leaning on God in tough times but taking the time to thank Him everyday for the countless blessings He has given me.
Pastor Katie asked me “If you could inspire the faith of others what would you say”. I have given the answer to this question a lot of thought and this is what I have come up with.
I would say that God always has a plan in our lives. There are times when we feel lost and alone and we should know that God is there- waiting for us to reach out so he can guide us.
I would say that, God shows us His love everyday, we just need to slow down and notice the amazing things He does to show his love.
I would also say that we all need to remember that the times we think there is NO PLAN, that God has made a mistake and we are on course destined for disaster- God is there, with a plan AND that he doesn’t make mistakes.
Ever.
There are many people that think those with disabilities are mistakes or are not perfect or are not worthy of life. They are wrong. Casey and Connor are my miracle men. Every second they are alive makes this world a better place. They bring out the very best in everyone they meet. They are PROOF that God does not make mistakes.
My faith is stronger than ever. I fear fewer things and I feel more strength in all my relationships because I know that everyone I meet has a purpose in my life. And now that my husband and I are expecting our third child in June, I am comforted by my faith that we will have the baby God intends for us. I don’t know if this child will also have Down syndrome or will maybe have something more challenging. All that I know for certain is that God has a plan and He knows exactly the baby we are meant to have. I find that very comforting.
Before I close I want to share a quote I think of almost everyday- It goes If you feed your FAITH your FEAR will starve.
So I ask you, What will YOU do to feed YOUR faith?
Thank you.
Sunday, October 16, 2011
Thursday, October 13, 2011
Coming in June 2012
My husband and I decided to announce yesterday that we are expecting another baby in June. We are very excited about adding one more to our wonderful family. Casey and Connor will be 2 and a half when this baby is born and it is my hope that they interested but not terribly jealous.
Once again, as with C&C, we have decided to forgo all prenatal testing. I think that it was a pretty easy decision for us to make. No matter what happens on the day this little wonder enters the world, no matter how many chromosomes, we already love her. (I REALLY want a girl this time, by the way! It feels like a girl.)
A friend asked me if I was going to get the triple screen and I said "No. We'll get whatever baby God intends for us. And we'll be happy. If this baby has DS- we already know the road. If not, then it didn't matter either way."
I mean this with all my heart. I feel like God had a plan when we got Casey and Connor and as it turned out His plan was better than any I could have come up with on my own. I feel like He has a plan for this baby as well.
Well, I just really wanted to share the big news here as well. We are so blessed and so excited!
Once again, as with C&C, we have decided to forgo all prenatal testing. I think that it was a pretty easy decision for us to make. No matter what happens on the day this little wonder enters the world, no matter how many chromosomes, we already love her. (I REALLY want a girl this time, by the way! It feels like a girl.)
A friend asked me if I was going to get the triple screen and I said "No. We'll get whatever baby God intends for us. And we'll be happy. If this baby has DS- we already know the road. If not, then it didn't matter either way."
I mean this with all my heart. I feel like God had a plan when we got Casey and Connor and as it turned out His plan was better than any I could have come up with on my own. I feel like He has a plan for this baby as well.
Well, I just really wanted to share the big news here as well. We are so blessed and so excited!
Sunday, October 9, 2011
He is more than a dad- He's a hero.
We were blessed again today with a wonderfully written article in The Akron Beacon Journal by Kim Hone McMahan which featured my miracle men, Adam and Emma. I am so proud of my guys. They aren't even 2 yet and already we have done a lot to spread awareness and make people realize how beautiful life is with a bonus 21st.
The article begins with some quotes right from *this* blog! Kim took something from the first posting I made. It was where I talked about my fear that I gave Matthew broken babies. That was a very real fear of mine back then, for about 15 seconds!
I would like to explain what Matthew means to this family because I have written shamefully little about my husband, my partner in this amazing journey.
From the beginning Matt has been loving and supportive and as I have written before he was my rock, the one who kept me tethered to solid ground after we received confirmation of the boys' diagnosis. He has not stopped being a strong, reliable, loving father since.
Every day when I see my husband's face light up at the sight of our children and their faces light up when they see him, I am reminded that I picked the perfect partner to spend my life with. Matthew loves our boys, he cheers them on and takes excellent care of them. For the record- I think he is a faster diaper changer than I am! He bathes our sons, feeds them, plays with them, sings them songs in the car when they cry. He is doing everything that a great father should. Someday when they are old enough there is no doubt in my mind that Casey and Connor will look at their daddy with nothing short of hero-worship.
Matt works hard so I can stay home with our sons. He also attends classes at Kent State to get his Bachelors degree so that he can provide more for his family in the future. There are days like today he gets up with the boys so I can sleep in and while I was taking my time in a nice, warm shower, he was making eggs for the guys.
When the boys got the stomach flu last December, Matt got puked on more than a few times and every time he just looked like his heart might break. NOT because of the shirt that was smelly and disgusting but for his sons who were so sick and weak. He was the one who shampooed the carpets when they were well. Matthew does more than I realize and more than he gets credit for doing.
I am continually impressed with my husband. We just celebrated our 3rd wedding anniversary on Saturday, October 8th, and I know that I made the right decision when I said I do. Matt is my very best friend. He makes me laugh and he can melt my heart when he tries. He makes me think and we have great conversations. He may not always say the right thing (sometimes he says nothing) but it's the things he does everyday that really show how much he loves us.
I get a lot of credit for being a great parent. People tell me that I am a good mother and though I am more outspoken when it comes to talking about DS and the boys Matthew does his part, too. He wears his Buddy Walk shirt at least once a week, always has his DS awareness bracelet on, he even went so far as to correct a young man in one of his classes the used the "r" word. He sold candy bars for the Buddy Walk, and showed the video I made in his classes. Matthew loves our sons unconditionally and openly tells people he loves them.
Matt is a behind the scenes hero. Everything I am able to do is because I have such a great husband. We are blessed to have him. We love him.
I couldn't imagine my life without him.
And, just for the record- there has not been one second of one day since their birth that Matt has felt like I gave him broken babies. As with most of my early misconceptions I was really far off.
I love you, Matthew. Thank you for being the kind of husband and father that you are. Thank you for making me smile. Thank you for building this amazing life with me.
You are my hero.
"It might have appeared to go unnoticed,
but I've got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you." -Wind Beneath My Wings
The article begins with some quotes right from *this* blog! Kim took something from the first posting I made. It was where I talked about my fear that I gave Matthew broken babies. That was a very real fear of mine back then, for about 15 seconds!
I would like to explain what Matthew means to this family because I have written shamefully little about my husband, my partner in this amazing journey.
From the beginning Matt has been loving and supportive and as I have written before he was my rock, the one who kept me tethered to solid ground after we received confirmation of the boys' diagnosis. He has not stopped being a strong, reliable, loving father since.
Every day when I see my husband's face light up at the sight of our children and their faces light up when they see him, I am reminded that I picked the perfect partner to spend my life with. Matthew loves our boys, he cheers them on and takes excellent care of them. For the record- I think he is a faster diaper changer than I am! He bathes our sons, feeds them, plays with them, sings them songs in the car when they cry. He is doing everything that a great father should. Someday when they are old enough there is no doubt in my mind that Casey and Connor will look at their daddy with nothing short of hero-worship.
Matt works hard so I can stay home with our sons. He also attends classes at Kent State to get his Bachelors degree so that he can provide more for his family in the future. There are days like today he gets up with the boys so I can sleep in and while I was taking my time in a nice, warm shower, he was making eggs for the guys.
When the boys got the stomach flu last December, Matt got puked on more than a few times and every time he just looked like his heart might break. NOT because of the shirt that was smelly and disgusting but for his sons who were so sick and weak. He was the one who shampooed the carpets when they were well. Matthew does more than I realize and more than he gets credit for doing.
I am continually impressed with my husband. We just celebrated our 3rd wedding anniversary on Saturday, October 8th, and I know that I made the right decision when I said I do. Matt is my very best friend. He makes me laugh and he can melt my heart when he tries. He makes me think and we have great conversations. He may not always say the right thing (sometimes he says nothing) but it's the things he does everyday that really show how much he loves us.
I get a lot of credit for being a great parent. People tell me that I am a good mother and though I am more outspoken when it comes to talking about DS and the boys Matthew does his part, too. He wears his Buddy Walk shirt at least once a week, always has his DS awareness bracelet on, he even went so far as to correct a young man in one of his classes the used the "r" word. He sold candy bars for the Buddy Walk, and showed the video I made in his classes. Matthew loves our sons unconditionally and openly tells people he loves them.
Matt is a behind the scenes hero. Everything I am able to do is because I have such a great husband. We are blessed to have him. We love him.
I couldn't imagine my life without him.
And, just for the record- there has not been one second of one day since their birth that Matt has felt like I gave him broken babies. As with most of my early misconceptions I was really far off.
I love you, Matthew. Thank you for being the kind of husband and father that you are. Thank you for making me smile. Thank you for building this amazing life with me.
You are my hero.
"It might have appeared to go unnoticed,
but I've got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you." -Wind Beneath My Wings
Monday, October 3, 2011
Am I making a difference?
I ask myself all the time if any of the posts I make here or on FaceBook or anywhere else actually make a difference. Do the people I share my story and sons with walk away with a new found knowledge and acceptance about Down syndrome? Do they forget me and the boys as soon as I walk away?
Today I was given hope that I am actually making a difference in the world. I received a thank you note from the med students at Case today and I want very much to share with you what they wrote. It lifts me up and makes me think that perhaps I can someday make people think that DS is a blessing and not a terrible thing and maybe I can save a baby or two from being aborted because they have an extra chromosome.
Dear Meghan, Thank you so much for coming and speaking to us! Your story and perspective were powerful and insightful, and we really appreciate it! -E.Z.
Dear Meghan, Your visit to our group last week truly opened my eyes. The perspective you brought really changed the way I view individuals with Downs and will truly stay with me forever. Thanx so much. -E.R.
Dear Meghan, Thanks so much for taking the time to come in and share your experiences with us. You certainly helped me gain a new perspective on Downs. Thanks! -D.B.
Dear Meghan- Thanks for sharing your perspective with us. Keep helping other people stay positive and appreciate the beauty of life! Many Thanks.
Meghan, We really appreciate you coming in and sharing your story. It gave us and especially myself a perspective I'd not heard before. Your love for your sons is very powerful and inspiring. -B.S.
Dear Meghan, Thanks for taking your time to spend it with us and introducing us to your children. REALLY changed my perspective.
Meghan, Thanks for your frank openness.
There are a few more thank you's but these ones REALLY touched me. I wish these men and women knew how much this card made my day. I pray that they go into the world as MD's and realize that they have the power to change the world, too. It was an honor to speak with them. I will cherish this thank you note forever.
Have a wonderful and blessed night.
Today I was given hope that I am actually making a difference in the world. I received a thank you note from the med students at Case today and I want very much to share with you what they wrote. It lifts me up and makes me think that perhaps I can someday make people think that DS is a blessing and not a terrible thing and maybe I can save a baby or two from being aborted because they have an extra chromosome.
Dear Meghan, Thank you so much for coming and speaking to us! Your story and perspective were powerful and insightful, and we really appreciate it! -E.Z.
Dear Meghan, Your visit to our group last week truly opened my eyes. The perspective you brought really changed the way I view individuals with Downs and will truly stay with me forever. Thanx so much. -E.R.
Dear Meghan, Thanks so much for taking the time to come in and share your experiences with us. You certainly helped me gain a new perspective on Downs. Thanks! -D.B.
Dear Meghan- Thanks for sharing your perspective with us. Keep helping other people stay positive and appreciate the beauty of life! Many Thanks.
Meghan, We really appreciate you coming in and sharing your story. It gave us and especially myself a perspective I'd not heard before. Your love for your sons is very powerful and inspiring. -B.S.
Dear Meghan, Thanks for taking your time to spend it with us and introducing us to your children. REALLY changed my perspective.
Meghan, Thanks for your frank openness.
There are a few more thank you's but these ones REALLY touched me. I wish these men and women knew how much this card made my day. I pray that they go into the world as MD's and realize that they have the power to change the world, too. It was an honor to speak with them. I will cherish this thank you note forever.
Have a wonderful and blessed night.
Friday, September 30, 2011
Overdue updates!!
Once again, I find myself thinking it has been too long since I have made the time to post here. SO... to update everyone I'll begin with a few weeks ago.
I was given the wonderful opportunity to go and speak with a small group of 1st year med students at Case Western Reserve University in Cleveland. Case is one of the top medical schools in the entire country and there are so many bright minds in one building it is almost overwhelming.
I arrived at the school and was escorted to a small room with 6 med students and 2 faculty advisers. I was told to tell my story and my experience with Casey and Connor and Down syndrome. Well, talking about my boys is my very favorite pastime. The students asked some great questions about our lives and I did my best to give an accurate portrayal of the wonder of my life with C&C.
One question that was asked was if there were an available pharmaceutical that I could give the boys to essentially cure them would I give it? I answered honestly and said no. I explained that to give a pill to my sons to make them "normal" would be like telling them that they are not good enough and nothing could be further from the truth. Casey and Connor are the perfect ones and the rest of us are flawed.
I was able to explain to these future MD's the power they have when the don the white coat. I told them that they have the power to give hope and they have the power to take it away. I explained that their attitude about Down syndrome will directly effect the way that a parent just hearing the diagnosis reacts to it. I told them never to apologize, there is nothing to be sorry about. Down syndrome is no longer a shameful, awful, unimaginable horror. There are very bright possibilities for our kids.
I also let them know about the 90% abortion rate when a baby is diagnosed prenatally. I told them that with the advent of this new blood test to diagnose earlier I fear the complete eradication of people with Down syndrome. I told them that it makes me feel like science does not consider my children as worthy of life as a child who is considered 'perfect'. I posed this question- if you are able to successfully diagnose and abort all babies with Down syndrome what comes next? You become able to diagnose Autism prenatally and then get rid of those kids? Then what- find a cancer gene and abort all babies who have the cancer gene because they MIGHT get sick? I told them there are many things that medicine is not able to diagnose prenatally that are INFINITELY worse than DS. I told them that Down syndrome is not a death sentence. I also asked them what happens when you get rid of any baby that has or might have a disability or health problem, who then becomes the weakest link? I asked them at what point we quit killing people in the search for perfection. I hope I gave them a lot to think about.
I ended our session with this,"Before you feel sorry for the parents of a child with DS think about this- how many serial killers or crappy politicians have Down syndrome? Feel sorry for the parents of typical kids." It's a tongue in cheek kind of a thing but really, I meant it as a way to say no future is certain regardless of a diagnosis.
All in all, it was an incredible experience and I hope to be invited to return next year. I would love to continue spreading the message that DS is a blessing NOT a curse.
In other news:
Casey and Connor got their Sure Step orthotics. These are small, plastic braces that wrap around their feet and rise to just above the ankle. They provide stability by preventing the boys from turning their ankles. We hope these will help them to finally learn to walk.
More exciting news to share! Casey and Connor are on a billboard for the Summit DD board. They have been participating in Early Intervention since they were about a month old. I am so excited to see my Miracle Men larger than life!
Finally, on October 16th, I will be speaking to our congregation about my journey with the boys and how it has affected my faith. I am excited for this opportunity but I am also feeling really nervous. I am supposed to speak for 10-15 minutes and I am going to begin working on what I will say this week after I complete this years Down syndrome awareness video which will be posted here and on Facebook tomorrow.
Well, that is all I have time for now. Thank you to all who take the time to read this blog and share what I write. I hope that the stories and thoughts I share with you here help to change the perceptions that you have about DS. My life is so much better because of who my sons are!
Thanks again and many blessings.
I was given the wonderful opportunity to go and speak with a small group of 1st year med students at Case Western Reserve University in Cleveland. Case is one of the top medical schools in the entire country and there are so many bright minds in one building it is almost overwhelming.
I arrived at the school and was escorted to a small room with 6 med students and 2 faculty advisers. I was told to tell my story and my experience with Casey and Connor and Down syndrome. Well, talking about my boys is my very favorite pastime. The students asked some great questions about our lives and I did my best to give an accurate portrayal of the wonder of my life with C&C.
One question that was asked was if there were an available pharmaceutical that I could give the boys to essentially cure them would I give it? I answered honestly and said no. I explained that to give a pill to my sons to make them "normal" would be like telling them that they are not good enough and nothing could be further from the truth. Casey and Connor are the perfect ones and the rest of us are flawed.
I was able to explain to these future MD's the power they have when the don the white coat. I told them that they have the power to give hope and they have the power to take it away. I explained that their attitude about Down syndrome will directly effect the way that a parent just hearing the diagnosis reacts to it. I told them never to apologize, there is nothing to be sorry about. Down syndrome is no longer a shameful, awful, unimaginable horror. There are very bright possibilities for our kids.
I also let them know about the 90% abortion rate when a baby is diagnosed prenatally. I told them that with the advent of this new blood test to diagnose earlier I fear the complete eradication of people with Down syndrome. I told them that it makes me feel like science does not consider my children as worthy of life as a child who is considered 'perfect'. I posed this question- if you are able to successfully diagnose and abort all babies with Down syndrome what comes next? You become able to diagnose Autism prenatally and then get rid of those kids? Then what- find a cancer gene and abort all babies who have the cancer gene because they MIGHT get sick? I told them there are many things that medicine is not able to diagnose prenatally that are INFINITELY worse than DS. I told them that Down syndrome is not a death sentence. I also asked them what happens when you get rid of any baby that has or might have a disability or health problem, who then becomes the weakest link? I asked them at what point we quit killing people in the search for perfection. I hope I gave them a lot to think about.
I ended our session with this,"Before you feel sorry for the parents of a child with DS think about this- how many serial killers or crappy politicians have Down syndrome? Feel sorry for the parents of typical kids." It's a tongue in cheek kind of a thing but really, I meant it as a way to say no future is certain regardless of a diagnosis.
All in all, it was an incredible experience and I hope to be invited to return next year. I would love to continue spreading the message that DS is a blessing NOT a curse.
In other news:
Casey and Connor got their Sure Step orthotics. These are small, plastic braces that wrap around their feet and rise to just above the ankle. They provide stability by preventing the boys from turning their ankles. We hope these will help them to finally learn to walk.
More exciting news to share! Casey and Connor are on a billboard for the Summit DD board. They have been participating in Early Intervention since they were about a month old. I am so excited to see my Miracle Men larger than life!
Finally, on October 16th, I will be speaking to our congregation about my journey with the boys and how it has affected my faith. I am excited for this opportunity but I am also feeling really nervous. I am supposed to speak for 10-15 minutes and I am going to begin working on what I will say this week after I complete this years Down syndrome awareness video which will be posted here and on Facebook tomorrow.
Well, that is all I have time for now. Thank you to all who take the time to read this blog and share what I write. I hope that the stories and thoughts I share with you here help to change the perceptions that you have about DS. My life is so much better because of who my sons are!
Thanks again and many blessings.
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
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.
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.
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.
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.
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