Tuesday, December 27, 2011

A Guest Post from 3 WONDERFUL young women

I was asked if I would post a "guest post" on the blog. The following is a post from another blog- and I think it shares an important message. Please take the time to read what these ladies have written and visit their blog. Share their words and know that you can make a difference! Thanks, Meghan

"Orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they're not real before you hold them in your arms. But once you do, everything changes.”

Have you ever felt the desire to do something that is going to effect a whole lot of people? The thought of your life making a difference to so many more....

But then you realize you are just one. You can not make a difference.

We have all had those feelings. It is how you choose to take those feelings and act, that shapes who you are, and your purpose in this world.



We are just three teenage girls.

We have a passion.

We have a love.

We have a hope.

We have a vision.

And, we have chosen to act.


Sunny is 20. She has a 19 year old brother who has Down syndrome. She lives in London.

Savana is 20. She has a 3 year old sister who has Down syndrome. She lives in America.

I, Taylah, am 16. I have a 3 year old cousin who has Down syndrome. I live in Australia.

Each of us have an intense love for someone with Down syndrome. We see them in a way most of the world chooses not too.

Did you know that 90% of babies with Down syndrome are aborted before they get to enter this world? 9 out of 10! Their lives are taken because they have a disablility. It just doesn't seem right, does it?

Did you know that in Eastern Europe, children with disabilities, such as Down syndrome, are left orphaned at birth.

They live in an orphanage untill they are 5 years old.

Once they turn 5 they are placed in an adult mental institution where conditions are so horrible most don't survive a year.

With adoption costing over $30,000 it is likely that most of these children won't ever see outside the walls of a crib.

When we were given the facts we decided that it was too devastating to just sit back. We decided to ACT!

'To love the unloved' was founded in December, 2010.

Since then, we have helped fund the adoption of 13 precious children!

Each month we host giveaways for a child or family from Reece's Rainbow (an adoption ministry that helps find homes for orphans with Down syndrome) on our blog!

There are so many ways that you can help 'To love the unloved' out!
Firstly, you can give a donation and enter the give away!

Secondly, you can drop by and leave a message of encouragement and support!

Finally, please keep us, and these precious babies in your thoughts and prayers!

Christmas is an incredibly important time of year for us and many of you! It is the time of year that many of us celebrate the birth our Saviour Jesus Christ. It's a time of Love, Kindness and Giving, a holiday where we appreciate all that we are lucky enough to have. We hope you will join our cause this Christmas and enjoy the time you spend with us, as we 'change the world one orphan at a time'

Visit our website:

Our blog:

Our facebook page:

Or emails us: tolovetheunloved@gmail.com

Thank you so much!

Love,

Tay, Savana and Sunny!

Christmas Blessings.

I feel blessed every day. I thank God every night for all the incredible gifts He has given to me and my family. There are so many things to be thankful for in my life. I have a wonderful husband, a strong marriage, 2 perfect and amazing little boys, an incredible family- in laws definitely included, a home, a strong faith, a church I adore, great friends, a voice I use to advocate for my sons and all those with disabilities, a crazy dog, great neighbors, 2 cars that are reliable, the chance to be a SAHM, food on the table, clothes on my back, a healthy baby growing in my womb, clean water, a safe neighborhood- and SO MUCH MORE.

Despite the fact I feel like I can't possibly be given any MORE to be thankful for blessings continue to come into my life. This Christmas we were blessed with an anonymous gift from a generous "Santa" and we are beyond blown away.

We were also blessed with seeing both our boys begin walking. They are now taking tentative steps throughout the house and are getting stronger everyday. Nothing could have made me smile more than seeing the looks on their faces when they gained one more step toward independence. Beautiful!

Finally, when my boys were about 5 weeks old my cousin came to our home to take some newborn photos of Casey and Connor. Unfortunately, the files were corrupted and we feared we would never see them. We decided not to get any other newborn pictures taken and I just figured they were forever lost. On Christmas Eve, my cousin- unbeknownst to me- slid a disc of 54 pictures in our diaper bag. They were some of the lost photos. She sent them around the world to a friend who is a computer genius and he was able to help recover them. We found them today.

I am going to share some of her work here because these are such beautiful photos of my miracle men when they were brand new to the world and all I saw in them was beauty and love. I still see those things but now they have fabulous personalities to go along with that and I see a much more round picture of who they are.

Enjoy these. I know I do.

God Bless.





Sunday, December 4, 2011

Happy Birthday Casey and Connor

My dear sons,

Two years ago I was at my doctor's office for a 36 week ultrasound. Before I knew it we were heading to the hospital to have you guys by C-Section. I was not prepared. My mom was on a plane heading for Las Vegas to run a half marathon, my hospital bag sat partially packed in a closet, my camera remained on the table at home. None of that really mattered- you were coming.

The day you were born I was also born. I discovered a new road laid out before me. I was as unprepared for this road as I was to go to the hospital. Again, my level of preparation didn't matter. I was no longer in control- you two were.

I have grown so much since then- just as you have. I look at you everyday and I can't help but feel awed that you are mine. You are beautiful and smart and funny. You are sweet and loving but you both have stubborn sides and when you throw the occasional toddler fit I can't help but smile- you are incredible.

I love watching you discover new things. Your world is ever expanding. You have opened my eyes to the beauty of everyday objects, the simple joy of scraps of paper, the profound wonder of all that surrounds us. Your eyes have taught mine to see. Before you, I was blind. You have taught me to see with my heart.

I am proud to be your mother. I am honored to be your voice. I am humbled by the love others feel for you, for our family. I will stand by you and for you for the rest of my life. I will protect you and prepare you and adore you. It's the perfect job for me.

This year I am confident you will begin walking and will utter a sweet word or two so we can hear your sweet little voices. I vow to explore with you and play with you and read to you. We will have such adventures this year.

Happy Birthday, miracle men. I may be your mother but you are the ones who gave ME life. I love you.

With all my heart,
Forever.
For always,
Mommy




Friday, December 2, 2011

TV debut!

A few weeks ago Rachel Salyer came to our home to interview Matthew and me about life with Casey and Connor and how we feel that DS has been a blessing in our lives. Rachel is part of a talented team at the University of Akron who work on Moving Forward- a television show that features great community interest and news stories.

Rachel first discovered our story on Ohio.com in the article that ran on our family and 2 others for Down syndrome awareness month. She contacted the reporter who wrote the piece and asked to be put in contact with Matthew and myself. She was interested in sharing our story and of course we JUMPED at the chance to spread the word that our lives are wonderful!

Today Rachel posted the video that will air on December 22 in North East Ohio. The part she shared with us features my awesome little family. The rest of our segment will also feature Kristin Dailey, executive director of The Up Side Of Downs- our local (and completely AMAZING) DS group!

I am proud of how well this turned out and I hope that we can continue to share the wonder of our lives with people all over. I feel so blessed to lead the life I do. God has given me more than any person has right to hope for.

Enjoy some photos of the interview and the video itself!




Wednesday, November 30, 2011

Apologies and Pledges

It doesn't happen very often and I am sorry that I let my frustration get the best of me the other day. I think a part of my mini meltdown can be blamed on pregnancy hormones. I have been told that I shouldn't let words get me down, that when people use the "R" word it's not directed at people like my sons. I disagree. There is no instance when someone can call someone else or something else retarded that makes it acceptable. I will continue to react and to educate and fight back against the use of derogatory words. I will fight this fight until people realize what a disgusting word it really is. It was not that long ago that people felt perfectly comfortable calling black people the n word. It was used in everyday conversations. SOMEONE stood up and said NO! This is not acceptable. Then more people stood with him (or her!) and made that same statement- 'This is NOT OKAY!' Today, we hear that word from fewer people (sadly from quite a few rappers) but it's not something I expect to hear in a conversation with the checkout guy at the supermarket. The "R" word is not the same though. Doctors, nurses, lawyers, politicians, actors, news anchors, singers, authors, teachers, students and people from every walk of life and age group can be heard using the "r" word. It's offensive and upsetting. My husband hears it often in his classes at Kent State University and he has corrected people. The kids on our street hear it and now some react and correct others. It's a snowball effect. I am standing up and saying 'NO! I will NOT tolerate that language!' My voice is joining THOUSANDS of other voices all proclaiming the same thing "THIS WORD IS UNACCEPTABLE!" Soon our voices may drown out those of overpaid actors and sports stars and we can change things. I have hope. I will continue to fight. I need to remember that things DO NOT change over night. I need to keep the faith that I can do this- I CAN change how people see kids like mine. I CAN change what opportunities people with disabilities are given. I CAN change the language people see as acceptable. I am strong and capable and I am NEVER going to quit fighting for Casey and Connor and for EVERY SINGLE PERSON WITH ANY DISABILITY. I will NEVER give up on trying to make this a better world for ALL CHILDREN to grow up in. You are all on this journey with me! Help me. Share the link to the Spread the Word to End the Word campaign http://www.r-word.org/ and have your kids, friends and family pledge to stop using the word retard and retarded. Post it to celebrity twitter and facebook pages. Make people aware! It will take time. It just so happens we all have time to spare.

Thanks for all the support. Please keep sharing this blog (use the buttons at the bottom of the post to share) and keep the faith that every time you stand up and say "No!" YOU are making a difference! As always, feel free to contact me at meghan_wilkinson10808@yahoo.com or find Casey and Connor on FaceBook and become a fan!

"Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle and a victory." Ghandi

Sunday, November 27, 2011

So... small

Dear God, Please give me the strength I need to be a good mother, a good advocate and a strong voice in the world. I pray that I can change how people view those with disabilities. There are so many with such huge platforms that choose to degrade and belittle rather than choosing to encourage others to treat EVERYONE with respect. Please Lord, help me on this road you have laid out before me. There are times I feel too small to do much and there are times I feel to angry to be productive. I don't know why you chose this as my life but I am yours, Lord. Help me do you proud. Amen.

That was my Facebook status tonight and the prayer that I feel so strongly in my heart. After reading the review of George Clooney's new film "The Descendants" that was written by a wonderful friend who has a son with Down syndrome I have been D.O.W.N. down tonight. There is a scene that is utterly offensive and derogatory with use of the "r" word and where one character actually makes fun of people with disabilities saying something to the effect of "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad."

WHY?

Again. A question I have no answer for. I will never have an answer.

I have pain though. And anger. And an overwhelming need to protect my children from the world I brought them into

When will it stop? How does someone like little old ME make a difference? I feel helpless and angry and so damn sad that I wonder if I'll be able to sleep tonight. I honestly believe that God has a purpose for my life. I want to do something good. I feel really small. So. Small.

And this problem is SO OVERWHELMINGLY HUGE!

I am having a regular, old pity party tonight. I am sorry. Those of you who actually read this blog deserve something better, brighter- but tonight I don't feel bright. I feel angry. Really angry. And totally useless.

I am going to go to bed and pray that God give me the strength to not pity to not feel small and help me find my path more clearly defined. And I am going to THANK Him for giving me Casey and Connor.

That's the true blessing here. If it weren't for my magical, miracle men I would still be living my life as the shallow, unaware, uncaring mess I was before. If C&C didn't have their bonus 21st's I would have no idea that there was so much beauty in the world- tainted by occasional ugliness. I want the best for my sons, for all children- with disabilities and without. I want EVERYONE to know the love that I feel for my sons and I want them to share that love. I want people to learn to raise up rather than knock down.

I don't want much.

Right?

Carrie Underwood's song So Small is my theme song tonight.

Yeah, Yeah
What you got if you ain't got love
the kind that you just want to give away
its okay to open up
go ahead and let the light shine through
I know it's hard on a rainy day
you want to shut the world out and just be left alone
but don't run out on your faith

'cause sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
when you figure out love is all that matters after all
it sure makes everything else seem so small

it's so easy to get lost inside
a problem that seems so big at the time
it's like a river thats so wide
it swallows you whole
while you siting 'round thinking 'bout what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you cant get it back

sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
oh when you figure out love is all that matters after all
it sure makes everything else seem so small

sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
oh when you figure out love is all that matters after all
it sure makes everything else...
oh it sure makes everything else seem so small
Yeah, Yeah

Thursday, November 17, 2011

Prayer Warriors PLEASE

There is this amazing little girl who I have never met. She is beautiful and strong. I love her. I love and respect her mother. I have never met her either. Sage Baker was born on December 3rd, 2009, 1 day before Casey and Connor. Her mother was part of the pregnancy website I found so many close friends on while carrying the boys. The friendships I made on this site are very real and are very strong and now as our little December babies turn 2 many of us are still very close and talk daily.

Athena, Sage's mom, has lived through so many tough nights since her beautiful girl was born. While her first 6 months were fairly typical, Sage was in for a battle no parent wants their child to face. Sweet angel Sage was diagnosed with leukemia on 6-26-10. The type of leukemia that she has is called acute leukemia of ambiguous lineage(or biphenotypic leukemia). You don't have to know much about cancer to know that that is a scary diagnosis for a 6 month old baby. The following is adapted from Sage's Caring Bridge page.

Many, many prayers were said for Sage and her whole family. Through God's grace Sage went into remission in September of 2010. She received a stem cell transplant four days after Christmas in 2010. She then spent 3 weeks at the end of January to mid February in the PICU because of a sever lung hemorrhage. Again, she fought and won. She was put on a ventilator and beat the very tough odds and survived. Athena was told by doctors that 95% of children who are put on a ventilator after a transplant like Sage's don't make it. Sage proved herself a fighter.

Sage was then diagnosed with Graft versus Host disease. She was back in the PICU and back on a ventilator for 2 1/2 weeks. She was in septic shock. She beat the odds again and was transferred back to the hematology/oncology unit on 10-3-11.

Doctors tried to prepare Sage's family at times for her death. They tried to make them understand that there was little that could be done to save her life. Sage and GOD had other plans. In what can ONLY be called a miracle Sage was released from the hospital on November 10th, 2011. Cries of joy and prayers of thanks went up all over the world for sweet baby Sage.

It is with the saddest of hearts I write this next paragraph- Sage was re-admitted to the PICU today for Septic shock. Doctors are trying to let this little warrior fight this without being put back on a ventilator. They believe that with the condition of her lungs she'd never get off it again.

Many times God has shown that if we believe hard enough and pray enough miracles happen. Sage has PROVEN she is stronger than most adults. Athena has PROVEN that a mother's love and faith can move mountains and help facilitate miracles. They need another one. They need it bad.

I can't begin to imagine seeing one of my little men so sick. I can't imagine a doctor trying to prepare me for their death. I can't even BEGIN to fathom the pain. PLEASE, if you pray, if you know people who pray, SHARE THIS STORY. SAGE NEEDS MILLIONS of prayers. She can win again. She can fight this. Pray that her little body, not even 2 years old yet, can overcome one more awful infection. Pray that God holds her in his mighty hands and heals her little body. Pray for her mother and father and all her family members that they be given the strength they need to get through this. Sage is a miracle, a wonder, a hero, an inspiration.

Give thanks for every healthy happy moment you have with YOUR children and try for 1 second to imagine how this must be and then think of how much you would want people to pray for your baby. That's really what it all comes down to, Sage could be ANY OF OUR CHILDREN. I've said before NOTHING in life is guaranteed. NOTHING. This could be your baby. Pray for her like she is.

Thank you.
God Bless Sage and Family.
I love you all.

Tuesday, November 15, 2011

I don't know much, but I KNOW I love you...

Once again, too long. I have been feeling pretty rough with this pregnancy. I do have excellent news to report- there is only one baby this time around and s/he is doing great! The baby is measuring right on with my due date of June 11th and all looks perfect.

This pregnancy has been such a different experience from the one with the boys. The first time I was completely oblivious to the fact that *something* could be wrong. It never even occurred to me that it was a possibility. This time around I am VERY aware of the chances and though I try not to worry, it does creep into my thoughts. I have had some pretty vivid nightmares about the baby being born without an arm or no heartbeat. I still stand by my decision to refuse all testing and I am putting my faith in God that we will have the baby we are meant to have but still, there are those small, nagging worries.

When I went for my first prenatal appointment last week I was given a book about the pregnancy and there were pamphlets about all the available testing that can be done. I was more than a little annoyed at some of these "informational" brochures.

In one for the new blood test available the term "Down syndrome fetus" was used. That annoyed me on so many levels but mainly because we strive so hard to teach people to use people first language. For example you don't say Down syndrome child, you say child WITH Down syndrome. They are PEOPLE first WITH a diagnosis second. Casey and Connor are NOT Down syndrome toddlers. That is such a small part of who they are. When will these medical "professionals" get this right??

I will say this; The midwife I met with for my first appointment was wonderful. Molly has such a warm personality and she just has this calming presence about her. At the beginning of my talk with her we were discussing my history and I told her C&C have DS and proceeded to make her look at pictures of the boys. She wants twin boys someday. She loved my miracle men- who can blame her? When we began discussing testing she said, "You don't want that, right?" 'No. I don't.' She smiled and said, "I have to ask but I figured." That was it. No pushing me toward it, no heavy sigh, no indication she thought I was a crazy lady. She was accepting and sweet and I think that once I get the go-ahead from my OB next month I will be switching to a midwife for this pregnancy and I think Molly is my number 1 choice.

I think more doctors and midwives should be as understanding as she was with what is ultimately a very personal decision. Women should not be pushed into testing if it's not something they are comfortable with. A woman on my June 2012 birth board on a popular pregnancy website said it best, "My husband and decided, before we conceived, that we wouldn't have any chromosomal testing. It's a Pandora's box I am not willing to open."

I am NOT opposed to testing. As I said, it's every woman's VERY personal decision. I DO however have a problem with what many choose to do with that information. If a baby is shown to have a higher likelihood of DS and the mother chooses to terminate the only one losing out is that baby. There is so much bad information out there about what life with a child with DS is like. If you want to test to know so you can be prepared, kudos to you. I am not one of those people who could have handled knowing ahead of time. I would have made myself sick with stress. If you want to find out so you can be sure you are having a "perfect" baby, well, that disgusts me. C&C ARE perfect. They are true miracles. I am blessed. I wish people knew that NOTHING is guaranteed in life. If your baby is born perfect you never know what might happen.

There are no certainties with children. Some live their whole lives perfectly healthy, others spend large chunks of their lives in hospitals fighting cancer. Still others end up with Chron's disease, Autism, brain damage- there are NO guarantees. At the very minimum this is true for my life. I KNOW Casey and Connor have DS. I KNOW there are things that will be difficult for them. I KNOW I will have to spend a lot of time fighting to make sure they get the same fair chances as other kids. I KNOW that people will look at us and judge- both positive and negative. I KNOW that I am blessed beyond belief. There are a lot of KNOWNS in my life. The UNknowns are the same ones parents of typical kids deal with all the time. I can handle that.

Thanks to everyone who continues to write and comment. I have the map narrowed down to 2 choices and should have it ordered in the next week. I will begin marking it and will post a picture as soon as possible!

meghan_wilkinson10808@yahoo.com

Have a blessed day!!



Saturday, November 5, 2011

To my extended family...

I am so overwhelmed by the number of amazing emails I have been receiving from people all over the country and Canada! Thank you so much to all of you that have commented or emailed or both! When I first began writing this blog I think it was more of a therapy for me than it was anything else. What it has become today is a way for me to share the love and joy that I experience with my sons with the world. That is truly a blessing I never imagined!

Writing that last sentence makes me realize how far I have come as a mother and advocate. When the boys were first born I think I merely COPED with the diagnosis. I just got through the day, often numb, but still overwhelmingly in love with the guys. As time went by, I began to get more comfortable with it and didn't feel the need to blurt it out to everyone. In the beginning, I would announce it to everyone to gauge their reactions. It was my way of seeing if it mattered that they had Down syndrome. I would say it really fast, like I was ripping off a painful ban-aid. "This is Casey and Connor and they have Down syndrome." Pause. Wait for reaction. Prepare to cry or fight. Sigh with relief when someone said they were adorable.

Now, I celebrate my sons. EVERY SINGLE CHROMOSOME! They are such fantastic little beings! And it's no longer a painful band-aid in need of a quick rip- it's a badge of honor I wear. It's more like "This is Casey and Connor and I GET to be their mother. HOW LUCKY CAN AM I!??!"

People tell me that I am a great mother and I used to shy away from that. Now I agree. I do everything I can to make my sons feel important and validated and capable and amazing and PERFECT. I make plenty of mistakes- hell, my boys have not willingly eaten a single vegetable since December of '10, but that's OK. There are days when I am the reigning queen of morning sickness and they watch too much TV while I try just to keep breakfast down but anytime they turn around I am there and I tell them I love them.

Being a parent to any child is challenging. Being a parent to twins is often like being a super hero- how many places can I be at one time? But being a parent to 2 children with Down syndrome is the least of my concerns and is probably the least challenging part of my life. If someone would have told me that 2 years ago I would have told them they were crazy. Now, I know it is nothing but an absolute truth.

All the letters and comments I have gotten lately remind me of how truly outstanding my life has become! Thank you for reminding me! All of you who read this blog, who share this blog and who live your lives loving someone with a bonus 21st make MY LIFE better. Even if I don't know you or your story, the mere fact that you share in our journey makes you family. I love my family.

Thanks so much!

p.s. Keep the emails and comments coming. I want to know where you are from so that I can mark it on the map! meghan_wilkinson10808@yahoo.com



Tuesday, November 1, 2011

Happy November

It has been really busy here in the Wilkinson House! We are still going weekly to speech therapy appointments and it is really starting to pay off. Casey has his first official word- NO! and Connor is holding long, babbling conversations with his brother and anyone else who will chat. It's amazing.

We also had Casey evaluated for Physical therapy today. He ended up measuring at about 12-14 months which is something I was both prepared for and expecting. He will receive PT twice a month and it is our hope that with work we will have him up and walking by Christmas- what a gift that would be!

Connor will have his evaluation on Thursday but he is already scheduled for twice monthly PT sessions also.

I am so thankful for the wonderful resources available to my children in our area. We have been incredibly blessed with amazing professionals who love our sons as much as we do. There are many who are not as fortunate and this is something I am well aware of and it makes me sad.

As we are approaching the Holiday season I am inspired to look at all the blessings in my life and I want to make sure I take the time to really appreciate each of the blessings we have been given. I will be starting a new project this year, a garland to hang in our dining room. The garland will be made up of leaves that will each feature a different thing we are thankful for. I think it really helps to sometimes SEE the blessings on paper so that you can fully appreciate each of them.

I am particularly thankful to each of the people who visit my blog and read about our lives. I have a request. Will anyone who reads this blog take the time to comment or email me where you are from? I am going to start a map for the boys and mark the locations of each of our readers so that they can see where they are touching lives. I can see that we get readers from all over the world and I am really curious how our readers in Russia, the UK, Australia, Israel and Japan have found us. There are many more locations but if you could participate in this project for Casey and Connor I would be greatly appreciative.

I must be going now but hope to update again soon.

Visitors, comment or email me at meghan_wilkinson10808@yahoo.com! Thanks!!

Sunday, October 16, 2011

Feed Your Faith

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.

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!

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






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.

Lift Me UP



This is the video I made for Down syndrome awareness month. I hope you enjoy it!

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.

Wednesday, August 31, 2011

It's All About Attitude

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

I want to start with this quote:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I even love the DS.

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

What will YOU do with your great opportunities?

xoxo, Meghan

Monday, August 29, 2011

It is what it is.

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

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

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

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

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

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

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

They are my miracle men.

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

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

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

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

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

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

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

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

I hate what I wrote but it's straightforward.

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

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

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

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



Sunday, August 21, 2011

Buddy Walking.

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

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

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

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

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

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

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

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

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

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





Tuesday, August 16, 2011

You Put Good In- You Get Good Out.

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, August 14, 2011

Love, Life and Death

This has been a week that tested my emotional limits.

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

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

On August 11th, 2011, Raymond Oliver, 31, finally got to go to Heaven after a long and courageous battle with cancer. Raymond's wife, Yvvette is a good friend of mine. I met her through an online message board for pregnant women. 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.

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