The Adventurous Life of Maggie Shae!: My First Street Fest and This Is Why I'll Miss The Olympics

Monday, August 13, 2012

My First Street Fest and This Is Why I'll Miss The Olympics

My 1st Street Fest
Something wonderful happened!
On Saturday, my mommy and daddy took me to my first street fest! They said it's a right of passage if you live here in Chicago, and I'm glad I finally got to see what all the fuss is about.
The three of us just walked around and took in the sights. Daddy carried me around in my carrier and I just dangled with my green sunhat on. Their were lots of other kids there for me to watch and things for us to see. It was a beautiful day out and we had a great time. Mommy and daddy stopped to talk to a man about a painting, but I thought it was too pricey, so I began to protest. That sure got them out of that booth fast! I was getting a little steamy in my carrier anyhow, so they took me out, but they didn't take the stroller with them (rookie mistake) so daddy had to walk back to the car and get it. While he was doing that mommy and I sat under a tree and it was so comfy that I fell right to sleep! When I woke up we were back at the fest and there was loud music and a lot more people than before. Mommy and daddy ate some great food and we just watched the people and listened to the music. Then it was time to go home...
I sure did have fun the Chicago way.

Why I'll Miss the Olympics
Okay, I have to admit that I don't even know what The Olympics are, let alone why my mommy and daddy loved watching them so much, but what I do know is that I LOVED the closing ceremonies! I danced and jiggled around in my bouncy seat and everyone laughed and got such a kick out of me, but I was just being myself. I loved hearing the music and seeing all of the lights and colors. I especially loved when the boy band came on. What can I say, I'm my mama's daughter! My Papa said he's never seen a baby act like that before. "Get used to it!" is what I say, because I am one super baby!

Oh man, mommy put a video here of me, but it didn't work so good...oh well.
I can't believe that I'll be 4-years-old when The Olympics come around again!

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Adventures in Blogging...

At 6 weeks old, after a very low-risk pregnancy, our first-born child was diagnosed (very unexpectedly) with Osteogenesis Imperfecta (OI), or Brittle Bone Disease. OI is a rare disease with no current cure.

Understanding OI can be confusing. It is not black and white. Each case of OI is unique and each patient is affected differently. Although each person affected has one thing in common: weak bones that can often break easily - one person can have hundreds of breaks in a lifetime, while another only suffers a few.

There are still many questions to be answered about OI.

This disease is unlike any other and we, along with the medical community, are learning more and more about it everyday.

What we know for sure is that many people are confused by it, including many doctors and medical professionals. Through no fault of their own, many do not study it thoroughly (if at all) in medical school. We've had to explain it several times to medical professionals we've encountered at hospitals, including ER staff at well-known Children's hospitals. Many times we hear from these professionals, "oh, yes, I've heard of that," but many have never seen or treated a patient with it. This can be scary since even just handling a child with OI can cause breaks. These are the very significant issues with OI: awareness, education, training of medical staff and research.

We originally started this blog to communicate Maggie's daily progress and doctors visits more effectively with all of our family and friends. Most of the time we put a fun spin on it by having it written in her voice. We also wanted to help others who may be confused and going through this same initial shock, as we were. We searched for others like us and for any information we could find. Sadly, a lot of it was even more confusing and scary. Lastly, we wanted to give Maggie 'a voice' before she even had one.

However, now that we've been living with the effects of OI we've come to realize that raising awareness about this rare and underfunded disease is what really matters most. By spreading awareness, as is the case with many other "popular" diseases, the general public and medical community can become more aware of how to effectively treat patients, and, most importantly, development for much needed new treatments and a cure can be funded.

Our lives have been forever changed from what we thought our expectations of it were. We've had to rearrange our lives and our daily activities because something as simple as getting bumped into at a splash park can result in a traumatic public display and a visit to the ER with a compression fracture of the spine. Sadly, these events are not uncommon for most families living with OI.

But we are on a new path now and determined to always make the best of the situation. Knowing silly, sweet, smart, sassy, strong Maggie, anyone can understand this. We feel fortunate that Maggie's case has been labeled 'mild'.

It wouldn't be right to say all of this without acknowledging all of our caring family members, friends, medical professionals and perfect strangers who have come into our lives and shown us love, understanding and support each and every day.

We hope that others can find humor and solace in the everyday adventures that our little family stumbles through, find hope in our journey and, ultimately, spread awareness about Osteogenesis Imperfecta along the way. Thanks for helping us achieve this goal!

To find out more please visit: www.oif.org

Monday, August 13, 2012

My First Street Fest and This Is Why I'll Miss The Olympics

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