Thursday, December 23, 2010

Special Needs Children's Blog Wins EPIC Award

You like me. You really, really like me.


epicmombloggerwinner


Last week I was nominated on Twitter for an award, Disney Epic Mickey's Epic Mom Blogger. The award was hosted by Mom Bloggers Club and they wanted "to reward a mom blogger who has closely supported important causes or otherwise gives back to the mom blogger community."

Voting was completed solely via Twitter, and I was blown away by the support I received from Twitter's #specialneeds community and all who tossed a nomination in for me.


mamabegood epic


When I saw this tweet last week I joked with the sender that I would use it as part of my acceptance speech. Never dreaming of course that it would happen.

On Monday, when the nominations were tallied I found out I was a finalist. As only the Top 5 nominees moved to the next round, I was encouraged, now I had a 20% shot of taking home the Epic Mom Blogger title and the grand prize. (The grand prize is a $1,000.00 gift card, Nintendo Wii, and copy of Disney Epic Mickey.)

I knew things were going to get tough. I only had 24 hours to write one helluva blog post describing why I deserve to win. Easy.

Not.

If you know me in person at all, you know I'm more of a behind the scenes kinda gal. I love to help and organize. I support many causes, but rarely am I the girl out front chanting with a banner and my face painted.

Except here.

On this blog I am waving my special needs flag and yelling at whoever will listen to me.

I wrote a blog post about my journey as a special needs mom, Disney Epic Mickey Searches For A Hero.

And I won.

This blog is a very small fish in a very large pond (no pun intended)....and I won.


***


So I want to take a minute to thank my a few of my Dorys. These are the moms without whose help, guidance, support and laughter I could not have made it over the past three years. These are the moms who encouraged me to start blogging and continue to help me share our story.

Thank you Sarahs.

Yes, plural.


Sarah I., writes (occasionally) over at Tales from a NEHI Momma about her three adorable (read: crazy) children.  In particular about her son Wesley, who is diagnosed with a rare intersistal lung disease, NEHI. She is hysterically funny and without a doubt has gotten me through some of my toughest times, she was around long before this blog.

Sarah K., is a baking from scratch, babywearing, clothes making, organic cooking kinda gal. So in other words, my total opposite. Our love of coffee and late night chats were instrumental in getting us through many tough surgeries and recoveries. She is a witty old soul, supermom to Mila and a total rock star.

Thank you to my lawyers (turned Special needs moms), Karin and Catherine. Although I have never actually sought legal advice from either of you, I'm sure you were good. ;)

Karin is the former special needs mom who wrote this and never stops offering her love and support, often through humor.  Many hours, emails, pictures and tears later...she is my go-to gal for everything I ever wanted to know about jaw distractions surgery but was afraid to ask. Also, her being a complete Disney fanatic helps to keep our friendship going strong.

Catherine, late to the party, but my virtual soul mate. My rock. You are a genius, do-er, go-getter and the best blog conference roommate, ever. I wish I had half your energy and spunk, I'd bottle it, sell it and we could be millionaires. Billy is one lucky boy to have you on his side. There is no one else who could have helped me through these past six months the way you have. I love you and thank you for all you have done.

And of course, readers, followers, fans and friends: Thank you for reading, supporting, commenting (hint, hint) and just plain being here. To my fellow special needs parenting bloggers, you are my online family and you are never far from my thoughts. You have helped to change the life of this struggling single mom, more than you know.

And lastly, a HUGE thanks to Disney, you make dreaming possible.



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Wednesday, December 22, 2010

We Will Be Celebrating Festivus Next Year

You know how sometimes you have a really great idea.

Like dressing your toddler for a holiday party.

Then remembering that you wanted a Christmas card photo in front of the tree.

While making him wear THE most adorable snowman hat.

Four days before Christmas.

While he screams at you.

Five minutes before you leave for a holiday party.

In a torrential downpour.


The No Christmas Card


Yeah.

Sometimes you just need to know when to walk away.

Each year Festivus is looking better and better.



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Tuesday, December 21, 2010

Disney Epic Mickey Searches For A Hero

The Disney franchise is famous for creating one of kind heroes and villains alike. As I was reading about the new Disney Epic Mickey game one description read, "players strive to help Mickey become an epic hero by helping him make right choices."

How cool would that be? To have someone helping you as you navigate the murky waters of parenthood, and better yet this lovely place called Holland (as the world of special needs parenting is often referred to.)

As a matter of fact, that's just the sort of person I was searching for eighteen months ago when I started this blogging "hobby." I have found that person many times over, she is alive and well in other "special" parents.

A few months ago I wrote that Shirley MacLaine was my hero(ine). The truth is I have many heroes, but my favorite Disney hero doesn't even have a film named after him, now how's that for unsung?


marlin 2


Marlin, from Finding Nemo, is an overprotective, yet determined parent who fights relentlessly against many obstacless to find his son lost in the Great Barrier Reef.  The first thing he says when he meets his son is "I will never let anything bad happen to you, ever" which is the same feeling I had when I held my son for the first time.

Eventhough Nemo is the one with the movie and nautical ride named after him (one of Austin's favorites, by the way), Marlin is the one befriending sharks and navigating through a mine field of jelly fish. He has a singular goal, to bring his son home safe.

How many times as a special needs parent have I wished for that same thing?

At the beginning of the story Marlin lives a nice, safe, secluded life unaware that it is about to take a very tragic turn, one that will challenge everything he believes and holds dear. Once Nemo is all he has left of his former life, he limits, rescues, protects and clings to him. His expectations are low for Nemo, due to his disability - his "lucky" fin.

Once his life has been irretrievably disrupted Marlin recognizes his true calling the moment he sees his son get taken away from him. The question of refusing his call is never an issue because he knew he would not allow himself to lose his only son. My son is lost in a different kind of ocean, it's called "special needs", and while many have swam here before few have been able to map the way.

I hold a certain affection for Marlin. We both have children who would be considered "special" and as much as we want to protect them and keep them home all to ourselves. We have begun a journey that will release us from our fears and bring us the greatest joy we have known.

I've written many times about WHY I blog. What started as a way of informing my family and friends quickly became more than a hobby, it is my joy and my passion. Once I started receiving emails from across the country and around the world it became something so much more than just MY story.

If there is one thing I have learned over the past eighteen months it is this, I'm not alone.


epicmickey1


I don't deserve to win Disney's Epic Mickey Mom Blogger simply because my child is sick or because he has special needs. Or because I am some sort of crazy Disney fanatic . (I am.)

I deserve to win because I'm not satisfied by waiting on the world to change, I am a hardworking, single mom who is effecting social change. I want acceptance for my son, not merely tolerance, and I know the best way to make that happen is to share our journey.

I can dream of bloggy fame and fortune (a book? a movie? a hollywood tv show?), but really all I want is for my child to live a happy, healthy, successful life. And the best way I know how is to set an example.


Thank you to everyone who has supported this blog and nominated me for such an honor.

No matter what happens, we both know he is the real hero in this family.


IMG_9554





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Tuesday, December 14, 2010

In Which We Try To Stay Out Of The Hospital

Early morning wake up calls by the Nurse are never a good sign. And when she says I have already called the hospital...even worse.

Let's backtrack for a minute, Austin was very upset last night and woke up a few times crying and doing that crazy thing where he desats to the 60s after he stops crying. This craziness started happening right after the jaw surgery and it was attributed to pain issues. So when it started again last night I figured it was probably some sort of stomach pain, it did not occur to me that it was jaw pain because he has been off his pain medication for a month.

He has had a bulge and redness on the left distraction site, which I have spoken to the surgeon about a few times. He figured it was scar tissue and said he would clean it up when they did the next surgery to remove the internal distractor hardware. Case closed.


Toddler Face Close Up


Which bring us to my wake up call this morning.

The bulge ruptured and the nurse noticed that there was bleeding from the distractor site and skin was hanging. Yeah gross, I know.

Of course it was before office hours so she called the Plastics doctor on call, to no avail. She woke me and I put in a call to the Plastics surgical nurse, packed a bag and jumped in the shower. Don't you love multi-tasking before you've had any caffeine?

When the surgical nurse called me back she said, "Come on down." So we did. I packed a bag because last time we got caught off guard and I knew if it was bad they would probably admit him.

Here's the deal.

The internal hardware needs to stay put until at least the end of January. There is no doubt he will have surgery to remove it, but it's too early right now. So this morning when I called out to my Facebook friends asking for prayers I was hoping that the surgeon would have another solution and we could avoid going inpatient 10 days before Christmas.


Hemifacial Microsomia Jaw Distraction


The current plan is to buy as much time as possible for his jaw bone to grow and strengthen. If they have to remove the hardware early the entire surgery will be considered a failure. They are certain he will relapse because the bone needs at least three months to grow in. So we wait. And hope.

We came home on both topical and oral antibiotics to try to avoid infection. Right now that is the major concern, avoid infection and buy time (preferably at home). He will remain on antibiotics until they remove the internal hardware. Austin has been a total bear today, so we are pretty sure he is in pain again. Sigh.

This surgery has had more complications than I care to mention right now. But the good news is we are home and everyone is taking this very seriously to avoid surgery too soon.

I tried to get a good picture of the offending hardware on my cell phone.  You can see it much better if he lays down, however then the screaming and kicking ensues so this is as good as it gets for now.


jaw distractor surgery


Let's just hope this antibiotic regiment works and we can keep Austin infection and pain free for the next 6 weeks. Thanks for all the thoughts and prayers, keep 'em coming.

****

If you are on Twitter would you please consider a tweet for me? Mom Bloggers Club wants "to reward a mom blogger who has closely supported important causes or otherwise gives back to the mom blogger community." If you think I qualify just tweet:

I nominate @sneakpeekatme for Disney Epic Mickey's #EpicMomBlogger! http://bit.ly/epicmomblogger



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Wednesday, December 8, 2010

Santa Says, Eat Your Vegetables!

I made a Christmas video for Austin...or rather, I answered a few questions and uploaded some pictures. The folks at Portable North Pole actually made the video for Austin. (Picky, picky.)

Either way, Austin enjoys watching HIS video message from Santa. And as a bonus Santa is asking him to eat new foods, now THAT is a gift Mommy would love for Christmas!!

video

The video is free to create, unless you want to download it. It cost $4.99 to download to your own computer.

Me thinks, it was money well spent.

And on the subject of Santa, check out this humorous story by Catherine Calhoun about keeping the magic of Santa alive. (Read the comments. I like the ones that says 'if you don't believe, you don't receive.')


Do your children still believe in Santa?



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Monday, December 6, 2010

The Disney Fanatic's Christmas Tree

Every year we (read: my mom) decorate a themed Christmas tree. Usually the theme is based on a color scheme, last year the tree was top to bottom in black and silver...my brothers would like to call the Raiders tree, but my mom dubbed it 'Aztec Princess'.

It was a knock out, but er...not exactly child friendly.

Exotic Christmas Tree Decorations


Yes, those are feathers! It was quite exotic.


Silver Tree - Aztec Princess

(No, those boxes are not props. We really do pile them that high, 25 Grandkids!)


We started decorating the tree last night and Austin was quite busy "helping" with the ornaments, as in removing them to play. That seems to be a familiar theme.


Toddler decorates Disney tree


DSCF9069


This year when my mother (the designer) asked for suggestions I added my .02 and the final theme is Disney. Because gosh darn it, Mickey and Santa go together!

I think the grandkids are going to love it!

Today some final changes were made, when he wakes up from his nap this is what Austin will see.


Disney Christmas Tree 2010


The tree features some stuffed Disney favorites, among them Steamboat Willie, Dumbo, Stitch, Pooh and of course, Sorcerer Mickey.  And to really top it off the Tigger and Winnie the Pooh figures are animatronics. So cool!

The Disney Princesses are all present, as well as some of Austin's personal favorites Buzz Lightyear, Pinocchio and Simba.


Disney Tree Decorations


Disney Christmas Tree


Do you have a holiday decorating tradition?




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Sunday, November 21, 2010

'Tis The Season: First Picture With Santa

Yes, you read that correctly. Austin has never met Santa in person before. If you recall, we do Holiday photo shoots at home.

But knowing that Santa season is coming, I have been subtly trying to prepare Austin for this moment for the past month and it paid off.

About a month ago I put a picture of Santa Claus on the fridge that I ripped out of a seasonal catalog. And every chance we get we have been practicing saying 'HO, HO, HO! Merry Christmas!'

It's one of the phrases that Austin was able to say last year that he seems to have gotten "lost".

Luckily, "H" is one of the sounds that has really improved since his jaw surgery. He can say "HI" or "Hew-wo" very clearly.

On Sunday we went to a local craft show and much to my surprise.

No line. No meltdown. No hesitation. No problem.

Bring on the jolly guy.


Santa and Mrs Claus TSA patdown for Mrs Claus


Austin climbed right into Mrs.Claus' lap and promptly gave her a TSA patdown.

I'm so proud.

Once that was done he focused on Santa's beard for a few minutes and they had a nice chat about The Beast. (Beast was 'toy of the day.')


Santa and Mrs Claus with toddler


It was an awesomely calm moment filled with smiles and candy canes.


The Christmas Card Shot


And then he reached out and grabbed Santa's hand! As if to say "Nice to meet you Jolly man. See you again next year."


Toddler holding Santa's hand


YES!! This is why I carry my camera in my purse.

I wasn't planning a picture with Santa so we were woefully unprepared in the holiday outfit department. Sorry.

In addition to Santa we also watched a fantastic group of Carolers AND decorated a cookie.

After the cookie we made a beeline for the car as "someone" was in sensory overload and in need of a nap.

It was a good hour.


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Thursday, November 18, 2010

My Kid Takes Great Pictures

or at least I think so. ;)

But I'll be honest, there was a time I didn't always think so.

When he was a tiny baby and underweight, a preemie, he did not always take great pictures.

He looked sad most of the time. Doh, he was sick so of course he was unhappy.

Still I should have taken more...if I had known, I would have taken more.



Last Picture - No Tubes
January 12, 2008 -- Look Ma, no tubes in my face, neck or belly.


This is the last picture I have of Austin before we knew exactly how sick he was, before his body was attacked with tubes.

(Okay so maybe attacked is the wrong word, but you get me.)

He still has that little frog. Some day we will recreate this moment, although it may be many more years before ALL those tubes are gone.


Last Picture - 2


I think that might be the beginning of a kinda-sorta smile.

That's how I'll remember it.

Do you have a favorite picture of your child? Ellen's photo carnival ends today. Come by and check out all the cuties!


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