World Down Syndrome Day- Celebrating the 21st Chromosome

It's here! It's World Down Syndrome Day and that's a big deal around here! I look at WDSD not only as a day to celebrate the boys and all those with Down syndrome but to celebrate the strides we are making every day in raising awareness, increasing acceptance and encouraging open dialogues and open minds. What great reasons to celebrate!

Today, in their preschool class, Casey and Connor will celebrate their bonus 21sts with their friends and teachers and they will do so wearing shirts specially made for the day as a craft project earlier in the week- tie dyed blue and yellow! Their class also made blue and yellow flowers for the other teachers to wear and made special treats to share with the other classrooms. I am bringing in blue and yellow iced cookies for snack and wrote a brief note to be sent home with each child in the class. It explains what WDSD is and thanks the other parents for raising awesome kids who are learning inclusion and extending friendships to those who may seem different from themselves.

Think about that. Think about that whole paragraph above and then think about the impact this one day could potentially have on hundreds of lives. Casey and Connor have 7 other children in their class plus 2 teachers. Every other classroom is made up of roughly the same number of students *between 9-12 students in each class). Each of those children will have an introduction to the idea of WDSD as a reason to CELEBRATE what makes us similar AND what makes us different. If even a tiny portion of that idea sticks in their minds we have begun moving mountains. Awesome.

Now, multiply that effect as at least a portion of those kiddos will go home and talk to their mom and dad or grandma or babysitter about the day and that could potentially open up conversations or plant the seeds of change in someone's mind. Now multiply that further and realize that this is just in MY kids' school. Celebrations like this are taking place in classrooms all over the world. The reach of this ONE day is mind boggling. Millions of people the world over could potentially be touched by WDSD and who knows how many lives could be saved if a parent is given a prenatal diagnosis of Down syndrome but they were effected by WDSD or how many new friends could be made by making children realize that their classmates with Down syndrome really are just like them. It makes my heart swell with joy.

Beyond the festivities at school, we will be celebrating alongside several friends from the Up Side of Downs at an indoor playground! After that, I will be attending an open house at Dream Out Loud Studio- an absolutely outstanding studio for artists with developmental disabilities that is run by the Summit DD. It is my intention to talk to as many people as possible today, to share our message with as many new folks as I can.

There is one other goal for the day and that is to hug my boys as many times as I can and thank them for changing my life, for forever altering the very fabric of who I am in ways that I could never have imagined. I will hug them and find more joy than usual in their smiles, in the way their sparkling brown eyes slant up just so, I will remember to enjoy the beauty of that single palmar crease, their cute little ears and the way that they look when they run, smile and laugh. I will celebrate every breath they have taken, every milestone hit, every goal yet to be accomplished and I will do all this with nothing but absolute joy and pride. I will look at my boys and KNOW that I have been given a gift far better than anything sold at Tiffany & Co., something far more precious than any artwork- I have been given LOVE in the shape and size of 3 year old miracles. I have been given little angels without wings. I have been given a mirror that shows me the potential of MY life if I live in a way that makes God proud and makes my boys proud. I have been given a glimpse at perfection, innocence and the purity of spirit that only a child with Down syndrome has. All children are amazing but a child with Down syndrome has accomplished so much in their life by simply refusing to give up when things are difficult. A child with Down syndrome works harder for every single milestone than I have ever worked for anything in my life and they do it in a way that enhances the lives of those around them. What better gift could there possibly be??

Today, I will also celebrate my gorgeous baby girl who accomplishes things so easily. I will celebrate the fact that she will grow up with 2 brothers who love her unconditionally, who look at her like she is the most fascinating creature on earth and who adore her without limit or reservation. I will celebrate that SHE will grow up knowing more than I did, more than her dad did and I know that she will impact this world as much as her brothers do solely because she got to grow up in a household that will teach her to respect those that others may blow off and to lift up those who may be weaker. She will always know that she is loved, that she is special and that she is important just like her brothers.

Finally, I will celebrate today for all the parents out there who are not quite ready to celebrate it yet. I will hold in my heart those who just got the diagnosis or who have a baby or child with Down syndrome who are not yet able to see the beauty of the extra 21st chromosome. I will celebrate that I was once at the stage where celebrating was the furthest thing from my mind but my heart was changed and I learned to not only embrace Down syndrome as part of my life but that I also learned to truly, genuinely LOVE that it's part of my life. I celebrate ME for how far I have come. I will also let those parents who are not "here" yet- that it is OK to not be ready to celebrate. It's OK to feel overwhelmed or unsure. It's OK to not love the challenges that come with DS. Just open your heart to the beauty of this life and in time the celebrations will come.

There are many things to accomplish today, much joy to be shared and many hearts to touch. I chose to start that journey here, with you. Please share these words with others if you feel moved to do so. There are so many to reach.

God Bless and Happy World Down Syndrome Day!!!
-Meghan

Dear Spring- ANY DAY NOW!

You know your life is interesting when the nurses at your local children's hospital know you by name, know your children's names and know that "you were just in here the other day." Yes, friends, we have had a heck of a ride since the beginning of the year. Since January 21st we have had Connor's eye surgery and shortly after we came home that same day, Casey was seen in the ER and admitted over night for fluids for dehydration from a nasty GI bug.

Connor pre-surgery

Casey and his bucket in the ER

 Two weeks later Casey was back in the ER and then admitted for the same GI bug and dehydration, while Reagan was seen in the ER after visiting twice with her pediatrician and having 6 days of a fever over 102.

Connor was then seen by a gastroenterologist about his 2 hospital stays in 2012 for dehydration and bilious vomiting and was ordered to have an upper GI study with barium. Casey was then seen in the ER and hospitalized with a nasty case of croup that required a couple of breathing treatments and a steroid shot, and we ended it with an ER trip and hospitalization for Connor who somehow morphed the virus that caused Casey's croup into a virus that caused coughing, fever and bilious vomiting in him. So, to add that up that's 1 surgery, 5 ER trips and 4 overnight hospital stays and 1 upper GI study just since January 21st- so just less than 3 months. Is it any wonder I have not had time to update my little blog??

I must admit that Matthew and I are feeling a little beaten up and at times have felt slightly defeated. Three kids 3 years old and under is a lot of work but when all 3 are always sick it's a whole new ballgame, folks! My amazing pediatrician assures me that once Spring comes and the boys get a little bigger and stronger their immune systems will bulk up and we won't always be frequent fliers at the ER. Can I just say how much I can't WAIT for that day?

There were times when I felt like I was surely going to lose my mind. I felt like I could not handle one more minute of sick kiddo when that wonderful thing called perspective would slap me upside the head and remind me that we have it pretty damn good. I would remember that these were all normal childhood viruses and that though they were coming one right after another, they were just little things. It could be so much worse. Once I thought about the fact that my boys have healthy hearts, don't have cancer, and don't have some other debilitating disease I was able to look up and thank GOD for blessing me with 3 healthy kids. Someone's road is always harder than mine and I do well to remember to count the blessings I have and to realize that they are numerous. Once that happens, though I am tired I am no longer down and feeling beaten. Life is much sweeter when you can count the joys and know they wouldn't be as sweet without the occasional setbacks.

In other news, we filmed our commercial for the Summit DD and the Disabilities Awareness Month Campaign and my sweet little family is featured throughout our county on several billboards. What an honor to be the voice of such an important message- that despite having kids with disabilities I AM THE LUCKY ONE!  Here are both the link to the commercial on YouTube and a photo of our billboard.

 Click the link below to watch:
I AM THE LUCKY ONE

Myth: Having children with special needs, people feel sorry for me. FACT: I AM THE LUCKY ONE!

Reagan is just getting up from her morning nap so I'll have to end this update! Thanks for hanging in with us! Remember to like Casey and Connor on Facebook at www.facebook.com/CaseyandConnor and write on their wall!

Also remember that this Thursday 3/21 is World Down Syndrome Day! Wear your blue and yellow and spread the word that the 3rd 21st is the chromosome for cool! Love to you all!!

-Meghan

Open Letter to Q-92 and Mo of the Mo Show

 This post is an open letter to Q92 in Alliance, Ohio, and Mo, host of the Mo Show. Recently, a beautiful woman with Down syndrome mistakenly dialed the station's number thinking it was the phone number of a friend of hers. Mo took the opportunity to humiliate her, recorded the phone call and played it on the air for all to hear and laugh along. I am sickened by this and this is my response to his prank. If you would like to read the news story please visit http://www.timesreporter.com/features/x898122120/Radio-DJ-mocks-Strasburg-woman-with-disability-family-responds?photo=0&zc_p=1


Dear Mo,

I had never heard of you until today and I can honestly tell you that my initial impression of you is not all that positive. In fact, I would likely refer to you as a bully based solely on what I do know. But, words are powerful things and as I do not know you- I won't even stoop to calling you what many already are.

I want to tell you a story. It's an important one so I honestly hope you will take the time to read this and reflect on it. I am the mother of 3 children. I have two sons and a daughter. My sons are identical twins and they are absolutely incredible. They have huge brown eyes, they smile and laugh all the time but can throw a temper tantrum that could stop traffic. They give incredible hugs but their favorite greeting for a friend is a fist bump or a high five! They are really typical 3 year olds. They LOVE cars, playing basketball, and they love to paint and listen to music. They adore dinosaurs- the T-Rex especially, and they think nothing is better than playing in the backyard with our family dog. They love little girls (ok, in all honesty- they love all girls and women, regardless of their age.) They like building with their blocks and watching the movies Cars and Cars 2. The get really excited about big trucks and motorcycles. In short- they are just like every other 3 year old boy out there.

Today, as we got out the van and started walking into school I heard a sweet little voice say behind me, "That's Casey and Connor! They are my friends, mommy!" It was a perfect moment- one of many that I have had with my boys- and I can tell you, even my heart smiled. Why is that such a big deal? Because that sweet little girl who exclaimed proudly that Casey and Connor are her friends said so without any idea that there is a difference between her and the boys. She sees them and sees only their awesome personalities. But there is a small difference between her and my boys. See, my boys have Down syndrome and there are many who see them and only see limitations or an easy target for mockery and cruelty.

When Casey and Connor were just 10 weeks old I made a post in a support group for parents of children with Down syndrome on Facebook. It was on that forum that a man told me I should be ashamed of myself for having my kids. I should kill them. He said there were enough retards in the world and shame on me for bringing more into the world. I was shocked- unable to breathe. Heartbroken. The pain that those words caused me- still cause me- are impossible to describe to someone who has never lived through something like that. After your on air stunt involving Kellie Baker I wonder, are you that cruel? Are you capable of telling a young, first time mother that she should murder her babies because they have Down syndrome? Are you that heartless? I should hope not. Perhaps you are horrified that I could make the connection between that jerk who encouraged me to kill my 10 week old babies and you who only made a little joke at the expense of woman who made a mistake we have all made hundreds of times- she simply dialed a wrong number.

Truthfully though, there is little difference between you and Mr. Murder your kids because you both spread HATE and PAIN and you both enjoy getting a rise out of people and you both feel superior to someone who is disabled. So, there you go, Mo. You are just like the man who sent me into such a whirlwind of depression that I couldn't even look at my sweet boys for days without sobbing, wondering what terrible world I brought them into- where they would be mocked, told they should be dead, hurt. I felt like a monster for bringing children so full of innocence into a world that seeks to destroy things that are innocent and pure just for pleasure.

But I was wrong.

Casey and Connor are in this world to make it a better place. They don't seek to hurt people. They don't make fun of the kid who falls in the hallway at school. They offer their tiny little hand to help him up. They would see you in the store and smile their million dollar smiles at you and I guarantee you would smile back. They would raise their little fist to you to fist bump and they would never know that you went out of your way to humiliate, degrade and belittle a woman who also shares their syndrome. They would see you as a friend- not as the enemy. They would look at you like someone who they were thrilled to meet. And those are the reasons I am glad every single day that my babies are here. They remind me every day to be my best self. They teach me to quit judging people by how they speak or how they look. They are the reason why I want YOU to know that though there are thousands of angry people out there who wish to see you fired, to see your sponsors drop their advertising with your station, to see YOU humiliated- I am not one of them. Casey and Connor have helped me see the good in people- even ones who make idiotic mistakes, which is what I think you did. I think you made a mistake- trying to be funny and controversial. You missed the mark and instead of bringing Kellie Baker down you only succeeded in making yourself look foolish, and small and cruel. Sure, there are many out there that would defend you but there are far more that think you are a small man who hides behind a microphone and headset and chooses to use his platform to hurt someone who seeks only to get a fair break in the world.

There are kids who are bullied every day because they are different. They are tortured. Some kill themselves- some kill others. Many young people are begging for the bullying to stop. Many want nothing but peace in their schools, homes and on Facebook and Twitter. If kids "get it" why don't you? Why would you take an opportunity where you could have chosen to explain kindly to a woman she dialed the wrong number but instead you opted make fun of her and record it and play it on the air so that many people could laugh at her? Why can't you have been more like that sweet girl at my sons' school who so proudly exclaimed, "They are my friends, mommy!" Why did you choose the low road? In the end, Kellie Baker will survive this and she will have nothing but love and support. You'll survive it as well but you have forever tainted your name and your reputation with this deplorable stunt.

I hope that all the angry people out there who fight every day for their loved ones with Down syndrome show you far more compassion than you chose to show Miss Baker. Furthermore, I hope you are blessed with an opportunity to meet and get to know and love someone with Down syndrome. Your life will only be better for that chance. Before I go I want you to know that I would never trade or change my boys for anything. I would never trade my life for someone else's. I have learned that the worst thing in life is not having children with disabilities- that's a blessing. I think the worst thing in life would be to fail at my job as a mother and raise a child who would be cruel to a person with a disability. That would break my heart.

Good luck to you, Mo.

Sincerely,
Meghan M. Wilkinson
Cuyahoga Falls, Ohio

Updates and an excuse to share lots of Pictures!

I laughed the other day when I opened my email and had 2 requests for updates about how Casey and Connor are doing in school! Thank you for reminding me that I DO have a blog and I should do a better job of writing!

Casey and Connor are doing amazing in school! They love it- all of it- getting in the van to go to school, getting out and walking into school, their lockers, their backpacks, the girls (!) and the entire experience! Their teachers and therapists are all wonderful. I honestly wonder what I was worried about. Most days I have to stop them at their classroom door and ask for a goodbye kiss. It's great.

In just 2 weeks there has been this huge blossoming in both boys. Connor is really becoming aware that things and people have names. This is a huge step. Every night he walks through the living room, touching things and looking at me and Matt and saying "ha?", like "What's this called?" We answer and he moves to something else. The other day we played for about 20 minutes and he just rotated between daddy, mommy, Casey, Reagan, ball, chair, box, desk, Bailey (our dog) and dinosaur. He would touch himself, too, and we would say "Connor" and he would smile. It's so cool!

Both boys are learning the sign for help now, too. Who knew that one small sign could make such a big difference!? Connor signs help when feeding himself and he just can't get something on the spoon or when he wants to be up on the bench at the dining room table. It's a GREAT sign!

On the health front, Connor had eye surgery on January 21st, on both eyes. He had a bilateral medial rectus recession and nasolacrimal duct probe done. Huh?? In simpler terms- Connor was going cross-eyed and the bilateral medial rectus recession simply moves a muscle in each eye back about 1/18th of an inch. The nasolacrimal duct probing was to help with his watery, runny eyes. The doctor took a very small probe and used it to gently open the tear ducts and place a teeny tiny silicon tube in his ducts to keep them open. In a few weeks that tube will be removed during an office visit and Connor's runny eye issue should be a thing of the past! As far as the muscle surgery- we won't know for a few weeks the level of success. It can take 6-8 weeks for the eyes to settle in to place and for the doctor to evaluate their position. 1 in 3 kids needs a repeat of the surgery. Please let Connor be in the 2 and not the 1! I HATED giving him to the nurse to take back to surgery.

Pre-Surgery

Casey was hospitalized with dehydration from a really nasty stomach virus that hit the whole household- minus daddy- but hit Casey the hardest. He is getting crankier by the minute so I think he is beginning to feel better. AMEN!

Other news:
Reagan continues to amaze me. At 7 months old she is crawling, pulling to stand, starting to furniture walk, can climb the first few stairs, use a straw, clap, and we think she is beginning to sign milk. She will eat anything and seems to prefer whatever we are eating over baby food though we still make her diet center around formula and fruits, veggies and cereal. Unlike her brothers, she will be a wonderful eater!

A while ago, I wrote about a photographer who contacted me about taking photos of the boys in order to raise awareness about Down syndrome. I'm certain you are well aware from your own lives, things just happen and time gets away from you and no matter how badly you may want your schedule to work, it sometimes just doesn't happen. I figured it was something that was just not meant to be but Lindsey Scholz of Lindsey Scholz Photography surprised me in the hospital after Reagan was born and did an amazing shoot right in my hospital room of both my sweet little princess and her amazing big brothers! OH MY GOSH! She is an ARTIST! If you are in the Columbus, Ohio, area and have kids or are having a new baby and want a birth or newbie session- Lindsey is absolutely amazing. You can look for her work on her FaceBook page at www.facebook.com/LindseyScholzPhotography Her newborn photos are breathtaking and I'm certain you will agree when you look at the following pictures that she captures the true child and not the one that is all poses and fake smiles. Truly, she is blessed with some fantastic talent!

That's all for now. I will definitely try to get back and post more soon!

Thanks for all the emails, comments, and new followers on Casey and Connor's FaceBook page! If you haven't "liked" their page yet you can find it at www.facebook.com/caseyandconnor and emails to me are ALWAYS welcome at meghan_wilkinson10808@yahoo.com

God bless,
Meg

New Year, New beginnings

First let me say, I hope everyone had a VERY Merry Christmas (or Happy Hanukkah, Happy Kwanza... whatever the case may be!) and that your Holidays were as happy and blessed as ours were!

Tonight we will be ringing in the New Year in typical Wilkinson fashion- at home in our jammies. Matthew and I will likely watch something on Netflix and Casey and Connor will be in bed sleeping by 8 pm. We were supposed to go to a wedding tonight but as usually happens- plans just fall apart. We are getting hammered with snow, Casey is CRABBY and Matt has one of his awful migraine headaches. Those 3 things equal no wedding for us but we are sending out warm wishes for a long and HAPPY marriage to Joy and Mike- you two deserve amazing things! Best wishes!!

I like to look back at the year as we move forward to a new year and this year was FULL of outstanding things! Casey and Connor learned to walk, learned to climb (nothing is safe anymore!) and they learned to use the stairs by themselves. They learned several signs and are beginning to use them more frequently though they do still resort to crying and misbehaving when they want something and we are not getting it fast enough. The boys accompanied me to 16 sessions with 3rd year med students at Akron Children's Hospital and the Genetic Anomaly conference at Case Western. They have shown so many people how fabulous they really are! Their Facebook fan page is over 570 fans, the blog has nearly 27,000 page views and has reached countries I have had to look up on a map to know where they are!

Most recently, the boys got to play in the snow for the very first time. They were not able to walk well enough last winter to put them out in the snow so it was a very memorable experience here a few days ago!

We survived Connor being hospitalized twice with dehydration and his also getting 2 stitches in his head after falling down the stairs. We went through 2 pairs each of SureSteps orthotics and 1 pair of crickets shoe inserts for Casey.   We went through countless diapers, transitioned to toddler beds, watched the movie CARS 4 bazillion times and watched as the boys adjusted to having a baby sister!

The miracle men were in their first Christmas program at church and they became the January 2013 page of the Summit DD calendar!

Overall, it was an exciting and wonderful year!

This year we are looking forward to starting pre-school, making new friends and continuing with Medical education at Akron Children's Hospital. We will happily forgo any hospital stays though!

All in all, the blessings we had were numerous, the bad days were few and the memories and smiles were countless.

In 2013, we wish you and yours nothing but love, good health and good fortune. We wish for you to remember that life is all about your attitude. Just think of this- ANYONE can enjoy a good day- it takes a strong person to find the joys in the bad days. May you always be able to find the joys, share a smile and take the time to help a friend or stranger. The smallest acts of kindness can make a huge difference. Please help spread the words that I write that we may reach many more people this year and they can learn that Down Syndrome is a blessing not a burden!

Most importantly, thank you. Thank you so much for sharing in our fantastic journey! We are thrilled you are along for the ride!

God Bless and Happy New Year!
With LOVE,
Meghan

Heaven gained 26 angels

We took the boys and Reagan to get new photos taken yesterday. I was sick. I was really sick actually and by the time we finished picking which portraits we would purchase I took the keys from Matt and headed out to the van to wait in the quiet until they were finished printing the chosen photos and we could go home and I could bury my aching head under covers. Rather than making me wait Matt drove me home and I went straight to bed and buried my whole self under 3 blankets and a pillow willing the pounding in my head to cease and the rolling in my stomach to calm. Most importantly, I slept.

I slept so hard and could not tolerate sound or light that I missed the news of another school shooting until I woke up around 6 pm.

I just wanted to crawl back into my safe cocoon and un-know that 20 children and 6 adults were murdered in a place that parents should feel safe sending their babies. I can't even imagine the horror. Truthfully, I don't even want to try.

I don't want to put myself in those parents' shoes. I can't. My mind just can't go to a place that is filled with such pain. I have cried for them and their precious angels. I have wept and thanked God that it was not my kids. I have questioned HOW and WHY this keeps happening. Mostly, I just hope and pray it stops.

The thing that got me the most yesterday was when I looked over my sweet little boys staring in wonder again at the lights on our Christmas tree and I got excited again thinking about Christmas morning when they see that in addition to the beautiful lights they will be surrounded by their loving family and brightly colored packages that are mostly for them and their baby sister. I thought of the joy of the Holiday and how that joy comes from the innocence of children and their unbridled excitement- barely contained in their tiny bodies. I thought of the smiles I will flash at my husband when our children are opening gifts and playing with new toys or stealing the toys their sister receives. Then my mind reminded me that we live in a world where there are 20 more children who will not come running down the stairs to check if Santa had come.

I hate my mind.

I hate that it can go from the happiest of thoughts to ones of unbearable sadness in such a flash.

And I just let the tears fall. I left my cheeks unwiped and I allowed my heart to feel the ache of 20 little angels in Heaven and the 6 adults who joined them there. I let my whole self shake at the thought of losing one of my babies.

I looked at Matt and at Casey and at Connor and at Reagan and I called my mom and when I knew every person that my heart holds most dear was safe I felt like I could breathe. And then I remembered that my angels would be starting school in less than a month and we would be sending our two little men out into the world and we would just have to pray that they would be safe. And I have to say- even with as much faith as I have in God and in His love- I am terrified to send my children to a place where I can't be with them, protecting them myself. I have to send them out into a world where people wander about with anger and hate in their hearts and one day they decide to let the evil take over and they kill. Maybe they kill just one person and we don't hear about it or they kill 2 or 3 and it may get a brief mention on the nightly news. Or, as happened today in Connecticut, the person decides to forever change the entire world and take away 20 innocents. 20 people who have never hurt someone and who still viewed the world as a place of wonder and saw the joy in everyday things. That man also took away 6 adults- some of whom used their bodies to protect those children. My mind can't comprehend the evil that does this. My mind doesn't understand the world that we live in that allows such hate to exist.

I don't know what to do about all this. I don't have any answers. I have prayers and hopes that we can somehow save humanity from itself. I pray that I NEVER have to bury one of my children. I pray that those families that do can find some kind of peace.

For now, I will hold my kids extra tight. I will continue to hug them and love them and smell the backs of their heads in that soft little spot at the base of their skulls and at the top of their necks where their hairline is- that special place where they smell like Heaven still. I will find more patience than I do other days when my boys are being typical 3 year olds. I will find a smile for them when they are trying to play with the baby by sitting on her thinking she can wrestle like daddy does rather than an expression of annoyance that despite being told 4 million times they still sit on her. I will be thankful that I have another day of waking up with my world completely intact and I will be able to kiss them over and over again. I can hug them to my chest and though they may struggle to get free so they can play and run and climb they will still turn to give me a quick fist bump and smile before they run off to adventure.

In short- I still have my babies. I am incredibly blessed and I know it. And for that I thank God for His love and for Him allowing me to have my babies and my husband.

I thank Him that we still can experience the JOY this season. It will be tempered with sadness for the families that do not have joy, that have only heartache.

To the parents in Connecticut, I don't know you. But my heart is with you. My prayers are with you. I am so sorry. I, along with millions more, shed tears for you and your children.

And to those babies that were lost- all 26 babies, because they were all someone's children- I pray that you are at peace, that you are surrounded by all that loved you who left the world before you and that you can see the impact you have made in this world. This mother's heart breaks that you won't be here with those that love you who remain here. God bless you all, sweet babies. You won't be forgotten.

God bless us all.

-Meghan

I have an announcement

As most of you know my real passion in life is advocating for my boys and others with Down syndrome. That is where my heart always leads me, in whatever direction is necessary to make an impact on the community and the larger world and how they view those with disabilities. Once again, Casey and Connor have helped me with direction in my life and have opened a door that I never would have considered before I was blessed with my miracle men.

A few posts back I mentioned an opportunity to help many with disabilities and I wrote how I was afraid to admit how much I wanted to be able to have the chance to make a real difference. Well, friends, guess what?? Last night, my appointment to the Board of the County of Summit Developmental Disabilities Board was confirmed! I will begin my 4 year term in January and I will be part of a board that has made Summit County one of the very best counties in all of Ohio in which to live for someone with a disability!

The Summit DD serves more than 4,000 people and their families providing services like Early Intervention, Community Employment services, housing options, transportation and so much more. You can learn more at www.summitdd.org.

I am so honored to have been chosen and I am really looking forward to helping make things even better. My family has been so incredibly blessed by the Summit DD. We watched our sons THRIVE with Early Intervention and every person we have encountered with the Summit DD has been kind, compassionate, helpful and supportive.

Our Early Intervention team became a part of our family. In the beginning, I would find myself looking forward to the visits from out Intervention Specialist and our phenomenal pt/ot team, Help Me Grow service coordinator and our Speech therapist. I would look forward to their visits because they always came out with great attitudes and wonderful suggestions for ways to help Casey and Connor learn and grow. I honestly believe that without early intervention we would have been lost. Instead, with their help and support, we all grew and learned and our confidence also grew. I knew we were doing the right things to help our miracle men reach their full potential. Our experience with early intervention made me feel like I was not alone and like I was supported even when there were days I was certain I was making nothing but mistakes.

And now, I get to pay it forward.

What a blessing!

So, celebrate with me, friends! I am so excited for this new journey!

Happy 3rd Birthday, Miracle Men!

As of yesterday Casey and Connor are 3 years old! Time has flown by and though I have been present for every day of their lives I find it hard to believe it has already been 3 years since the miracle men arrived in our lives. It has definitely been an adventure and a wonderful journey!

We spent the day yesterday at Akron Children's Hospital where we go every Tuesday to do medical education. My mom and I take the boys and Reagan to talk to small groups of 3rd year med students about Down syndrome. It always amazes me how many of these future physicians have never met a person with DS. So, we go and let them meet Casey and Connor and ask questions and I share my story, my feelings and thoughts about being a parent to children with Down syndrome. It is an incredible blessing to be able to go and do this every week.

There have been a few of these students that have really made an impact on me. "Dr. Matt" is one I have written about and yesterday was Kellan (or maybe it was Kellen). He will be a wonderful doctor. He was asking wonderful questions and I really felt like he will be the kind of doctor that takes the time to actually listen to patients and in my opinion that is one of the most important qualities a doctor can have- good listening ears.

Some of his questions had me really thinking and trying to explain just what a gift my boys have been to me and to my family. In honor of their birthday I would like to take a few minutes to tell all of you what I came up with.

Kellen/an asked me several questions but one in particular really made me think. He asked something along the lines of have I ever considered what my life would have been like if C&C were typical. That was not his exact question and I may have misinterpreted what he was asking but that's what my momma brain heard and processed. The simple answer to that question is yes.

I would be lying if I were to say I have never imagined what my life would be like if Casey and Connor were not my miracle men. I have thought about it a million times. I think we would still be a happy family but I think I would have gone back to work. I may have gone back to school by now. I would have loved them as fiercely as I do now so that would be the same. I would have expected them to always try their best- again no change from my life now. I would have been singing with them, laughing with them, sharing adorable photos of them with anyone with a cell phone or facebook page. So, really nothing would have been that different. Well, that's not entirely true- I would have had more free time- time not dedicated to weekly speech therapy, twice monthly physical therapy, bi-monthly feeding clinics, 2 visits monthly with Help Me Grow and Early Intervention, blood work to check their thyroids and CBCs to make sure there was no indication of leukemia. There would have been no visits to orthopedists for helmets and foot braces, cervical x-rays to rule out AI (atlantoaxial instability) and no need for EKGs to rule out heart problems like endocardial cushion defects. There would have been no need to KNOW words like endocardial cushion defects, atlantoaxial instability, duodenal atresia (or the need to know it presents with the classic double bubble)- no need to know the increased risk of leukemia or early onset of Alzheimer's. I feel like I could teach a class on the laundry list of crap that can come with that bonus 21st chromosome. But really, with all of that comes something amazing- the biggest thing that would have been different if Casey and Connor were not who they are- if they didn't have designer genes- is that *I* would be different.

When I look back on the person I was before my sons I can tell you that I am not proud of who I was. I was impatient, judgemental, cranky, lacking direction or any ties to my faith. Sure I smiled and loved to tell my cheesy jokes and I was outgoing but I was different. I was less. I was... incomplete. I was like a puzzle with missing pieces that you didn't realize were missing until you got to the end and noticed the damn dog was busily chewing up the last pieces you needed to complete the picture.

And then, on December 4th, 2009, that changed.

The dog dropped the pieces he was gnawing on and they were tapped into place- a little soggy, a little worn, but they were there and the puzzle finally came together.

My world changed.

I changed.

And it was for the better.

I still struggle with impatience and I still have a temper. However, I am far quicker to walk over to a person I don't know and ask if I can help them if I see them struggling with something. I have learned from my sons to not give up on anything. I have learned to look at people and see a friend not yet made. I see every hand as one worthy of a high five, a fist bump or an " it's a real pleasure to meet you" hand shake. I have learned to slow down and enjoy the little things. I have learned to recognize the infinite joy that comes from something that seems so simple like bubbles (even better in the living room!!) or an empty shoe box (Hello deluxe garage for toy cars!). I have learned that I *CAN* reach people and share the message of the gift of my children and I can do it in a way that may make them re-think how they view Down syndrome. My sons have given me courage. My sons have given me a voice. My sons have restored my faith in God and man. My sons have shown me that life is NEVER set in stone and that anything can change the path you *think* you are on and you may just find yourself on an adventure beyond your wildest dreams. My sons have given me many, many gifts. Every day is an honor to be their mother. Every moment I have with them- even the *really* trying toddler moments- are better because they are in my world.

Casey and Connor have taught me many things. But the thing I cherish the most- the best lesson I have learned from my sweet faced little angels is that it is ALWAYS acceptable to LOVE without reservation, without limitations and without hesitation. They have taught me that a smile that doesn't light up your whole self is not a true smile. They have given me the gift of laughter. They have shown me that even though I may not have a Grammy winning voice that I can belt out "Somewhere Over The Rainbow" with the best of them and my renditions of Billy Joel's "Lullaby" or Journey's "Don't Stop Believing" could bring any audience to their feet. To their little ears there is nothing sweeter than mommy's voice singing them to sleep. What an incredible blessing.

Casey and Connor look at me and they think I can do anything. Puzzle too hard- give it to mommy! Can't get your socks on? Mommy's got it covered! I am the keeper of the graham crackers and Goldfish and the reader of  "Goodnight Moon" and "Pajama Time". I am the singer of crazy little tunes while we brush our teeth, put our pants on or march like dinosaurs down a very public hallway. In short- I am a hero to my kids. I love them unconditionally and in the biggest way I know how. I am not a perfect mommy but I am their mommy and that is a pretty damned amazing job.

As I reflect on the last 3 years I am left with a full heart and a joyful soul. God has given ME a gift that I still don't know how I deserve. He has given me a do over. God has given me 2 children who make it seem criminal to not try to be the best me I can be. I have been given something many people would love to have- a second chance to be a person to be proud of, looked up to and maybe even admired a little.

So, yes. Yes, I have imagined my life if Casey and Connor were born without the extra chromosome and I have to honest- it's not nearly as sweet as the life we are living now. Sure things are challenging at times and we have some extra appointments that other families don't have to worry about and yes, my head is crammed full of lots of scary medical terms. But at the end of the day, I wouldn't trade any of the little inconveniences for the mountains of blessings that have been heaped on me because of my miracle men.

The true miracle of Casey and Connor is their power to completely transform a person.

I am sitting here wondering how we are so blessed to celebrate their birthday and yet WE are the ones that got the true and best gifts of all.

Happy Birthday, my little men. There are not words to tell you how much you mean to me. My life was worth nothing before you came along. You have given me purpose, passion and limitless love. For the rest of my life I will give thanks every day to God for giving me YOU!

I love you.