The Adventurous Life of Maggie Shae!: My Year in Review

Monday, December 31, 2012

My Year in Review

Oh my stars! I can't believe that 2012 is (almost) over and 2013 is on its way in..

What a great year it has been, for what I saw of it, anyways!

2012 brought so many wonderful new memories for me! I emerged from my nine-month hibernation into this great, big world and met Mama and Daddy for the first time! I also got to meet all of my very special family members and many, many new friends for the first time too.
I've also learned to do so many wonderful things in the past 8 months like roll over, sit up, eat real food, play, clap, and 'talk' (to name a few).
I have had so, so, so many wonderful adventures and I've visited lots of new places (Michigan, Kansas City, Cincinnati). And I've had a few first real heartaches too..

But, Mama and Daddy tell me that there will always be good things and bad things that happen in life, but that the good always far outweigh the bad.
They say that I should always stay happy and look for the good in all people and that I should try my best to do good things and help others because this is the way it should be. Right now all I can really do is give out smiles, and I do that often, so I am trying my best to be a good listener!!
No matter what, the good and the not so good, 2012 was a great year. I mean, how could it not be?!

To all of my family and friends, may you have love, good health, and good fortune in the new year. You all mean so much to me and I couldn't be more grateful for all of your tremendous love and endless support. Although I can't talk just yet, I think you can see my happiness, gratitude and love for life just by seeing all of my smiles each and everyday!

For those who have gone away in 2012, we all miss you so much, but I know that you are still here impacting our lives through your wonderful spirit and showing us love through the memories you have left for us. We will always have you in our hearts.

I hope that you had a great 2012 and that 2013 is even better. I just cannot wait to see what 2013 has in store for me!! I'm going to crawl soon, and then I will be 1 year old..oh, I can hardly wait for all of my new adventures!!

Many, many, many happy adventures to you as well. Let's all strive to do good things and be nice to each other this year. I know we will all make a real difference.

Lots of hugs and smooches!
Maggie Shae, signing off for the last time in 2012...
Stay tuned for more of my adventures in 2013!

If you can't read it, my sign says:

Happy New Year!

All the best to you and yours!

Happiness, good fortune & lots of love

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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, December 31, 2012

My Year in Review

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