Dear Mary

My goodness! Two years have gone by without a post. Partly it's because life has been so busy with my 3 miracles and partly because this was more of an exercise in self therapy when it began. Don't get me wrong, there are definitely times I still need the therapy but for the most part I am doing well with this whole motherhood deal.

I am coming out of "retirement" for a very special reason. I was sitting in Reagan's room last night impatiently waiting for the little Owl to go to sleep and decided to check my email. I had a notification that I had a new comment on the blog. As I read the words that young Mary wrote on my 1st ever post (#1) I found myself crying. Her words touched me so deeply. Since her comment was anonymous I didn't have a way to respond privately but I feel like the words I have for Mary are words that everyone can benefit from in some way so, an open letter on a blog I've neglected for 24 months was the answer.

First, her comment (I debated re-printing it here but since I was able to publish it on my first blog I felt like it would be ok here, too)

Anonymous said...

I'm a fifteen year old girl that stumbled across this blog by chance. I know it has been been many years since this very first post but after reading just a few of your most recent posts I decided I wanted to read it all from the beginning. That letter was very beautiful. It made me really happy to read those nice things, because even though they were not directed at me, it made me feel better about myself and my condition. I was diagnosed with Tourette's syndrome when I was twelve. Since then I've been through a lot. I've been bullied, suffered a lot of pain, both physical and emotional and it sometimes makes me feel really awful about myself. I often feel like disgusting, idiotic-looking, freak. I worry I'll never find a a boy that will love me for who I am. I already have a hard time making friends, and my wacky personality- half childishly hyperactive maniac that talks nonstop, half spacey, antisocial, withdrawn, kinda creepy loner- doesn't help. And my family isn't always supportive. My sister often accuses me of faking and my dad frequently lashes out a me with angry words and never understands. Thank you for the kind words, they may not have been for me, but they certainly spoke to me and anyone who struggles with a difficult condition. I cannot wait to read the adventures of you and the boys, and later their sister.
-Mary

Now my response.


Dear Mary,

Thank you for your kind words. You have no idea how much they struck me and how much the mom in me wants to give you a big hug and tell you that you are perfect just the way you are. You have challenges that not many people can relate to and that makes things harder which is totally unfair because being 15 is hard enough already! But I promise you one thing, Mary, the kids that deal with challenges in high school and make it through make the coolest adults! In fact, my very best friend in my life has Tourette syndrome. I met her my freshman year of college and almost 18 years later we are still best friends. Her diagnosis doesn't matter to me. Half the time I forget all about it because her personality and her willingness to love me for my faults trumps her occasional tics. She is beautiful and perfect just as she is- I wouldn't change my Miranda for anything. And do you know what, Mary? She is happily married with 2 beautiful little girls. Your future can be anything you want it to be so don't let anyone tell you any differently!

When I look at my kids I feel so blessed because they are each exactly the person they were meant to be and as their mother I love them unconditionally. Does that mean I never get frustrated with them? Nope! I am a very flawed person and sometimes impatience wins out over patience, anger wins over calm and in those moments I know I am wrong but again, unconditional love does not mean I am perfect. I am certain that your dad loves you. Adjusting to a new diagnosis is not an easy thing. Parents want everything in life to be good for their children and it is really hard when we can't control things. It is painful to watch your child struggle. There are no words that I can find to express that well enough. I physically hurt when my kids aren't immediately accepted or when they work so hard to do something and still can't get it yet. Another example of that is when Casey and Connor want to play with a new child at the park and that child looks at them like they have 2 heads and runs in the other direction, it breaks my heart. It doesn't happen often but it does happen and it hurts so much. If I were a different person that pain may come out in a very different way. Instead I wait until they are in bed to cry a little, to let myself feel that pain and then I work even harder to raise awareness so that the next kid isn't quite such a turd.

Sisters are just kind of jerky sometimes. It just is what it is but at the end of the day your diagnosis may be hard on her, too. (Does it seem crazy that everyone else struggles with it as much as you do?) I am sure that your "wacky personality" may be overwhelming to her. I always try to remind Reagan how important she is in her brothers' lives. I know it can't be easy for her to be carted to therapy waiting rooms, to have to wait for things because C&C need me more at that moment, and all the other things that come from being a sibling to kiddos with special needs. She is so important to her brothers and they adore her. She gets mad at them sometimes but she ALWAYS loves "her big brothers!"

Maybe you could write a letter to her and your dad letting them know how you are feeling- writing my feelings always seems to help me. And sometimes writing them  is more effective because the other person has a chance to really read and let your words sink in and they can respond calmly and rationally.

Mary, I don't know you but I can promise you something- you are perfect just as you are. You are a special person who will grow up to be an awesome adult. You'll find a best friend who loves the way you are and a man that makes you want to be the best person you can be, that loves you regardless of your Tourette syndrome. You will be stronger than the people that never had to fight for anything. You will make a difference because you have experienced challenges that the people who had it easy growing up never had to deal with. It may not sound like much but these things give you character. Character has gotten me through so much! Love yourself, Mary. Love you for who you are. That is the biggest challenge of all because rarely are other people as cruel to us as we are to ourselves. Start by listing everything you love about yourself. Read that list everyday. Tell yourself only the kindest things. YOU deserve YOUR kindness. Build yourself up so strong that no one can tear you down. Look in your mirror and accept that you deserve kindness, compassion, friendship and love. Refuse to settle for anything less. Always be your biggest cheerleader. Laugh at yourself kindly. Just be amazing. You are amazing. Do you realize your words moved me in a way that few have done lately? I have been thinking of you since last night and wishing I could tell you what an incredibly special young lady you are and how much your small act of reaching out opened my heart.

You're exactly who you are meant to be, Miss Mary. Own that. Rock that. Change the world. Love yourself. And remember that this momma thinks you are valuable, worthy and pretty damn awesome.

Love, 

Meghan


For anyone else who needs more information please visit Tourette Association of America

Dream Until Your Dream Comes True

I have always liked the band Aerosmith. Actually, the very first concert I ever went to was Aerosmith at the Richfield Colosseum in 1994. I was a freshman in high school and I went with my friend Kasha. We sat in the nosebleed seats and it was the first time I had ever been around anyone who was smoking pot. The guys next to us were pretty heavy smokers and about 1/4 of the way through the show one of them threw up on the floor next to us. We didn't even care. It was a magical night. It was our first foray into "adulthood" and we felt bigger than life. Well, I did and I am imagining that's how she felt, too.

As I said it was my first concert. Everything about that night, the sound of music blaring out at you, the smells of beer and cigarettes and yes, pot, all mixing with my Estee Lauder Pleasures perfume I got from the family I babysat for through junior high and high school. It. Was. Awesome. I had been a fan of Aerosmith from a young age. I remember seeing the video for "Rag Doll" while sitting on an exercise bike at my mom's gym when I was 7 or 8 and thinking A.) that girl's underpants are showing and B.) I LOVE this song. I had no clue what it meant but that music moved me.

There is a point to all this, I swear. The part of that night I remember the very most was when I heard the song "Dream On" for the very first time live. I. Was. Blown. Away. I will never forget that moment. Or that song. I think of that song as one of many on the soundtrack of my life. Something about it just gets to me. It has inspired me countless times and I find that usually happens when I need it the most.

It got me again today. I was thinking about how when I was pregnant with Casey and Connor my dreams for them were pretty standard- play sports, be well liked, always like me the best because they're both mommy's boys, go to college, be something outstanding, give me lots of grandchildren to spoil. After I heard the words Down syndrome that all changed. For awhile I had no dreams for their futures. I dreamt for their immediate lives- I dreamed that they would smile, laugh, coo, hold their heads up, sit unassisted, stand, walk. I didn't go much past those basics.

It's amazing how things changed and how I was looking at their lives in small bites. I was looking at their every accomplishment as reason for celebration and didn't bother thinking much further or bigger. Until the last 6 months or so and things have once again changed.

More back story- when I was young I went to Kent State University. I went right after high school and I didn't really know what I wanted out of life. I just went because I was supposed to go. I didn't really have a dream for myself. I just wanted to do what I was supposed to do. I chose Early Childhood Education as my major because I liked kids well enough and I figured I could do that as a career. I was never really invested in the idea though. Long story short- I failed out of college. Not just failed out a little- like in a BIG, BIG way. I failed at something that I never truly gave any thought to but I was really sad that I let the opportunity get away from me. Not all was lost- I met one of my very best friends at KSU and she and I remain very close. I also learned that I am not so great unless I have a clear dream and direction.

I have not had a clear dream or direction in, well, ever. That is until my world changed completely and I was given my miracle men and their sweet baby sister. I have dreams now- for all of us and while they do include a number of small things ( I am still waiting to hear the word mommy) I find I am planning much farther ahead.

I am dreaming of my angels changing the world. I want them to work hard and accomplish amazing things. I dream of watching Casey and Connor being handed high school diplomas- not certificates of completion- DIPLOMAS. I dream of them going off to college- maybe even Kent State which now has a great program for adults with Down syndrome. I dream of Reagan becoming an advocate for anyone who struggles. I dream of filling her head with positive things and confidence and the wisdom to share those gifts with the world. I dream of raising my children to become kinder than I was, stronger than I am and far more focused than their momma ever managed to be herself. I want my children to go out and make this world a better place to be and I want them to do it in a BIG way. I want them to shatter preconceived notions and to challenge the idea that some are worth more than others. I want them to go out into the world and I want the world to take notice. In short- I want them to be successful and kind and loving but to also be great at whatever they choose to pursue.

In honor of those dreams for them I have decided to allow myself to dream for me also. I am really beginning to think of MY future. I want to be something. I want to be someone who makes a difference. I want to live up to all the potential I ignored all those years ago at Kent State University. I know I want to go back to school. I am not sure for what yet. I have it narrowed down to  a few possibles.

In addition to wanting to go back to school I have also decided to allow myself to want other things. Recently I was approached about running for a position with a well known agency. I can't go into too much more detail but if I decide to pursue this opportunity and I get chosen I could be part of something very important and it would likely help me to help many, many people with disabilities. At first I was hesitant to even admit I wanted this position because, as is my nature, I don't believe I am good enough or qualified enough. But some very good friends gave me the pep talk that very good friends give and I have decided to push the fear aside and go for it- and to admit I really want to be picked. SO, without any other details than that please pray that I am chosen and that this surge of confidence holds. God will know what you're talking about.

On that note, I feel I have written enough tonight. I'll leave you with a part of the lyrics that often inspire me...

dream on, dream on, dream on,
and dream until your dream comes true 

Simple words.
Great meaning.
Better memories.

Fair warning- I'm in a mood....

I try very hard to show as many people as possible what incredible blessings my sons are- how EASY we actually have it in our lives. I have enlightened some, annoyed a few and shared the wonder of Casey and Connor with countless people. There are days I realize that my efforts and the efforts of families like mine are just not doing enough fast enough to make people realize that being afraid of Down syndrome is foolish.

Today I read that a couple in Portland, Oregon, was awarded nearly 3 MILLION dollars in a wrongful BIRTH suit. Let's look at that again- WRONGFUL. BIRTH!

This couple decided to have genetic testing done during the pregnancy and the child was not found to have Down syndrome. It turns out she does, in fact, have Down syndrome. She has mosaic down syndrome. The difference between mosaic DS and trisomy 21, which C&C have, is that in mosaic DS not every cell is affected- only some have the extra 21st. In trisomy 21 ALL cells have the extra 21st chromosome.

Had the couple known ahead of time they would have aborted their child. Since they didn't know they feel like they are stuck with this little girl.

I am really angry that the case was not thrown out, that a jury sided with them and felt sorry enough for their "burden" that they awarded them ANY money at all. I am angry about the precedent set by this case. But mostly I am angry that this little girl seems unwanted, unappreciated and viewed as a burden rather than a blessing.

WHAT???

What is this world coming to when people do not recognize the value of a human life? I am disgusted. I am angry. I am outraged.

I'm so, so sad.

How dare these people call themselves parents. They aren't. They are greedy, pathetic jerks.

If raising your child is such a chore why not give her to a family that would LOVE to raise her? Why not just admit you are not loving enough or compassionate enough to look at your own flesh and blood and LOVE her regardless of the number of chromosomes she has.

A real mother looks at her child and sees perfection. A REAL mother doesn't need money to "deal" with the burden of knowing her child should have been killed prior to birth.

Apparently the parents have received death threats. Let me cry for them. Nope. I have ZERO sympathy. It's no more than they offered their daughter. They would have slaughtered her before birth had they known she didn't meet their definition of perfect.

90%+ of babies diagnosed before birth with Down syndrome are aborted. KILLED. MURDERED. SLAUGHTERED.

Why?

Because they aren't "perfect"??

What's perfect? I'm not perfect though I don't have any extra chromosomes. I am not even close to perfect. I am flawed. This post proves it. I have an angry heart today. But THOSE people- those disgusting excuses for parents need to realize they aren't perfect either. FAR FROM IT. They are flawed and yet there are many who love and support them regardless of their MANY shortcomings. It's unfortunate their daughter isn't lucky enough to be afforded the same unconditional love.

There are people in my life who think I should ignore things like this. That I should not be affected by stories such as these that PROVE that my kids are less valued in society. How can I ignore this? How am I supposed to know that there are so many who look at me with PITY thinking I am BURDENED by my sons? How can I ignore the fact that as a parent of children with DS I am FORCED to fight for them- to ensure that they are given a fair shake? HOW can I sleep soundly knowing that there are juries out there that feel so strongly that a child should have been killed before birth that they award her parents $3 million in compensation now that they are stuck with her? Things like this serve only to reinforce the view of the majority that children with disabilities are worth LESS than those that don't have any disability.

I've said this before but I feel that it bears repeating- how many rapists, serial killers, drunk drivers, dead beat parents, child abusers, molesters, robbers, or drug addicts have Down syndrome?? How many adults with DS are sitting on death row for killing? So, really, where's the perfection in that??

Casey and Connor may have extra chromosomes. They may not talk yet, we may FIGHT for every damn milestone they hit but they are the most amazing little men I have ever met. They smile at everyone they meet. They see an old man in a store that most people would look past and they SMILE. They reach out to touch him, to say HI, to see the man that so many forget to love. I have seen this behavior time and time again. They make people smile. All the adults and teens I have met with DS are the same way- they see the people the rest of the world would deem unworthy of a smile, a kind word and big hug. What's MORE PERFECT than unrestrained love? What's MORE perfect than a person who sees the beauty that most of us forget to notice.

Normally, I can let things like this just go but not today. I am so sick about this. Not just sick but absolutely FRIGGIN FURIOUS! MY KIDS ARE NOT WORTH LESS THAN SOMEONE WITHOUT DOWN SYNDROME!! THAT LITTLE GIRL DESERVES A LIFE FULL OF LOVE AND NURTURING!! Sometimes I really hate this world.

And as I write that- I turn around and look at my miracle men and I am reminded that my corner of the world is perfect. My little piece of paradise is far, far better because of who my sons are and I adore, love and am blessed by every last chromosome in those little bodies.

And to anyone who is too ignorant to see the joy and beauty of my life I feel SORRY for YOU. I PITY YOU. You don't need to pity ME. My life is better than you could ever imagine.

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

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

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

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.

It's been too long

Life has been really busy and I have been really bad at updating this blog. I need to make it a point to get here at least once a week.

Casey and Connor are doing great. Casey finally got a new tooth which gives him 5 and Connor still just has 4 but I know they are both getting more soon.

The guys have also discovered the joys of climbing stairs. They can't stand or walk yet but they can get upstairs for bath time in about 2 minutes. This was an exciting milestone as my back is really starting to feel the strain of having 17 month old boys that don't walk. I will be looking for a good chiropractor soon I think. I know that when they are finally walking I will miss these days where I get to hold them so often and I will wonder why I ever wanted them to get a little more independent but I guess that is just part of this journey.

We have also started a new session of swimming lessons. They meet on Mondays and Wednesdays just for this month but it is a great time for all 4 of us. Matt and I laughed so much the other day watching Casey splash and kick his legs and watching Connor go after his floating block that I know MY face hurt afterward. I love these swimming lessons because the boys get the freedom to move so much without gravity weighing them down making it harder. Casey kicked his legs for about 15 minutes straight and I know this would have been a huge challenge for him on dry land. They both continue to get stronger everyday.

Casey has also mastered the art of peek-a-boo. When we say "Where's Casey?" he throws his hands up and over his eyes. It makes me laugh every time. He does it too fast sometimes and covers his ears or his cheeks but that just adds to the charm of the game. Connor is starting to play as well though more often than not he covers his mouth. So adorable.

Both the guys are giving high five now and they blow kisses. Occasionally Casey will wave though he waves with his fingers in towards himself. Funny little men.

It has been a busy few month with all their new skills, tricks and games and we are enjoying every moment of life with our Miracle Men.

If you are on Facebook Casey and Connor have a fan page now. I am using it to share facts about DS and to help raise a little more awareness about the amazing community we are proud to a part of. Just search for Casey and Connor!

Have a blessed day and thanks for joining us on the journey!