Running this site is really hard. Keeping the servers online, paying the bills, dealing with the incessant spam and of course reconciling the time spent with my own life … My wife and three children and my very demanding job are very rewarding but are also time consuming.

But the most difficult thing to do when running a site like this is to actually write. It is impossible to keep people interested in a site without fantastic and unique content that is engaging, funny, and personal.

More than anything I want to write content, interact with my friends, give updates about my family and especially Teddy and just overall enjoy the community that should be lively here. But I will be the first person to tell you that the demands of life have gotten in the way of me being able to consistently do that.

That is where the Blog, The Ordinary Life of an Extraordinary Girl came into the picture. Alex’s mom (I’m actually not sure if she wants her name shared so I’ll just keep it this way) became a member last year and she was able to take the role of creating the most interesting stories on the site. She committed to chronicling Alex’s stories for one year and we were very lucky to have it. The stories of our favorite 17 year old teenager who sometimes had  ”mood swings” and other times lit up her family with pride and joy could always be counted on to be the constant on this blog. The stories of the Bender family captivated us and honestly, every time a new post came out, many of us were riveted by the next story about Alex.

Let me tell you, the writing is amazing, the characters are wonderful and the plot is relatable. The blog was started almost one year ago when we were introduced to Alex. At that time Alex was a 16 year old high school sophomore who has Down syndrome. The blog started with Alex’s experiences in starting her sophomore year in school and ending with her participation with the Special Olympics.

The story begins on Alex’s third day of school at the inception of her school’s football season and her desire to play on the team. She eventually ended up and excelled as a valuable assistant to the team but I think this sets the perfect stage about her personality and the type of headstrong and confident kid she is.

I was hooked immediately and it became apparent to me that she (Alex ) is head strong and persistent and it runs in family because the blog posts kept coming and the audience became more interested with each posts. The blog is very honest also as it relays real world realities and feelings; such as when they found out that Alex would have Down syndrome. As a parent with a child that has Downs, the story hit home and I immediately knew that this blog would not be ordinary … it would be “extraordinary”.

As her story continued, the realities of Alex’s life started to really hit home with many of us that are new parents. As the blog says, “Life is not a bed of roses, unless you count the thorns”. The platitudes that many of us about our kids always being happy and well behaved melted away a little as we got to know Alex more intimately. I think those of us who have gotten to know Alex over the year know she can be a little obstinate, especially when it comes to sports; but that is one of her most wonderful characteristics.

The stories kept on coming and after a while I can honestly say that I felt like I knew the Benders. Watching the constant battle with weight to her amazing desire for inclusion and being active in her school and society. It became clear to me that the future my family has with my son, Teddy, is going to be something that although was unplanned and unexpected has the capacity to be interesting, rewarding and wonderful.

The posts in many ways act as training guide for those of us that are traversing the life of having a special needs child. When the Educating Alex post was written, Rebecca and I were right in the middle of our IEP for Teddy and we went into the meeting with a very strong beliefs about the benefits of integration and the role that the early childhood services would play in his life.

We want Teddy to be completely immersed in his environment and having Alex as a reference as to what can be accomplished, reinforced many of our decisions about how we want to approach Teddy’s education.

We also are committed to getting Teddy into Special Olympics as soon as we can and one of the great things about the blog was reading the wonderful experiences and the sense of accomplishment that it brings to our children’s lives. Recently, Alex participated Special Olympics and her successes  make us all proud! Congratulations Alex and well done!

And then there are the Alexisms — I laughed when I read every single one of these and I can tell with Teddy (5) that these are coming my way also. If you have a chance to check them out, they are hilarious. Some of my favorites:

I don’t know, can you ask me again?

I don’t know, I told you this a hundred million times

Talk to the hand

Of all the posts that were written, the one that sticks with me the most when I think about Alex, is The Blue Shoes.

The battle of the shoes epitomizes the relationship between a mother and a daughter during the teenage years. Watching this relationship grow and reading about the dynamic of a family with a child who has Down syndrome and teenage syndrome brings an amazing sense of relief to me for some reason. I want Teddy’s experiences to be very unique and I want him to have an obstinate nature,  make choices, and self awareness about what he wants.

Those crocks must have been disgusting but I think they will mean the world in the memories they have created.

I love these stories. I love the ups and the downs. I love the successes and the challenges. I love that she is amazingly active and that she has confidence and diversity in her life. I love that she is experiencing a life that is fulfilling and her family is accommodating. I love that she has a future and she is striving to be better every day. I love that she is difficult and ornery and speaks her mind. But most of all, I love that she gives me hope.

I want my child to have a wonderful, fulfilling, challenging, creative, diverse, interesting and most of all a happy life. I want him to be just like Alex.

Thank you so much for sharing your wonderful life with us Alex’s mom. I will miss your frequent updates but more than anything I will miss Alex.

Please stop by soon and give us updates.

Justin