Thursday, March 21, 2013

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!!!

Monday, March 18, 2013

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:

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 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!!