My New York Sob Story

This is my entry for Project Mom Casting. What is PMC? Only the BIGGEST thing to hit BlogHer since...well, since BlogHer.

It turns out some fancy schmancy producers will be in NYC to interview blogging moms for a REALITY show. I know, I know. Call me crazy.

Truth be told, I recently submitted our story for a documentary series on Special Needs families, but we didn't make the cut.

Maybe this time, a single mom raising a toddler with special medical needs and trying to make a difference will be worthy.

I dunno. Whaddya think? Oh nevermind...just please support this craziness one more time.





My name is Janis, and in less than 10 days I will once again be bound for the allure of Manhattan.

I lived in NYC many moons ago, as a starving graduate student. It had always been a dream of mine to live in New York. So like Sally Albright, I packed it all up after graduation and I went to NYU.  I lived with my best friend and set out to pursue a Master's Degree in Counseling and Guidance.

Yeah, I actually planned to help other people plan their lives. Ironic, I know.

To say things didn't work out is an understatement. The short version: I got sick & headed to Student Health, they offered me a ride in an ambulance to the hospital. Yeah, that kind of sick.

The kind of sick that has your medical insurance denying you coverage. The kind of sick that has you sobbing on a plane home within a week. Why? Because you are a student and covered under your parent's policy...but only in California. (Read the fine print.)

Yup, my New York dream and my graduate education were stymied by lack of adequate medical coverage. {Why is this such a persistent theme in my life?} So I withdrew from NYU and vowed never to return to NYC until I was rich, it would all be different then.

Well here I am returning, not exactly rich; in fact, just as broke and under-insured as the day I left. But, this time I am returning rich in experience. This time I have a different set of dreams. This time I am coming with 2500 of my best friends.

Yeah, I'm still single and unlucky in love, but Manhattan is filled with women just like me...if you don't believe me just watch SATC {well, you know except that they are skinny and rich...and probably insured.}

Despite my hasty exit, I'm eagerly anticipating my return. I'm even staying an extra day in Manhattan because I want to walk through Greenwich Village and Washington Square once again. I want to browse the book vendors in Union Square.

I want to pass The Plaza and dream of staying there. I want to window shop at F.A.O. Schwartz and pretend I can actually afford to buy my son something.

Someday.

I still believe it will happen someday. These experiences, these stories I hold, Austin's story...someday they will all be told.


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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Just Sayin' Saturday: Bloggers Unite

"Kindness is the language which the deaf can hear and the blind can see." ~Mark Twain





I often get asked how and why I decided to become an advocate for children with special needs. And the truth of the matter is, I didn't.

An advocate, according to Merriam-Webster, is:  (emphasis mine)

1 : one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court

2 : one that defends or maintains a cause or proposal

3 : one that supports or promotes the interests of another

Back about one hundred years ago I, somehow, managed to graduate from college with an actual degree. Despite my love of writing, in my Sophomore year, I ditched a major in English to pursue Sociology. (I didn't say it was a useful degree.) ;)

Right about now I am wishing I had stuck to writing, because let's face it, my grammar sucks. (I like to call it creative license.)

I'll admit at first the Sociology classes were fun and maybe the term 'easy A' got tossed around, but soon it became my calling. I studied, I researched, I wrote. I ate, slept and breathed social justice.

So you see, all those college courses on inequality, societal values and discrimination helped to shape my world tremendously.

How does that relate to being an advocate for special families? It's actually quite simple.

This is what I believe:

• Every child deserves to be loved.
• Every parent deserves to be understood.
• Every voice deserves to be heard.

I didn't CHOOSE this role. It chose me. I was advocating long before Austin came into my life, now I just have a better reason.

Feel free to blame my college professors.

Now go spread some kindness.

This post is my contribution to Bloggers Unite cause, People First: Empowering People with Disabilities. Please stop by and read others. There are over 300 bloggers writing for this cause today. Advocates, every single one of them.


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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Places to Peek This Week

BIG NEWS!!!!

Outside of the mom blogging world this may not make any sense...but right here in my little world this is HUGE!

I'm going to New Yooork City!!! (in my best Pace Picante sauce accent)

Yes, ladies (& gents) I won a partial scholarship to attend THE biggest mom blogging conference of the year, BlogHer, from the awesome non-profit organization, LATISM (Latinos in Social Media.)

The conference is in -- TWO WEEKS!! So yours truly will be heading to NYC for 4, count 'em FOUR days to meet with some of the biggest bloggers...over 2400 of 'em. Can you imagine the sheer magnitude of that?

My lovely roomies for the weekend will be Catherine Calhoun of Children's Rare Disease Network and Julia Roberts of Support for Special Needs, respectively. Thank you ladies for agreeing to help keep me of the streets of Manhattan. ;)

If you'd like to help another Latina blogger, LATISM is passing the hat around this weekend to raise even more money to help bring a few more ladies to New York.

Even if  you can only spare $5.00 it would help tremendously! (Tax Deductible, of course!)

Help save a Latte, Help send a Blogger to NYC!






{Note: Any donation above does not directly benefit me, it goes to LATISM. If you are interested in helping to complete my conference sponsorship, by all means shoot me an email.}

***

If you are participating in Bloggers Unite on Saturday July 24th don't forget to link up your blog post. I linked up my post on teaching children about differences. We have exceeded our goal of 300 bloggers! WOOT!

***

Being Latino has a new feature called, Latinos Doing Their Thing. So this week I was doing my thing! Thanks so much to my sweet friend Libby Julia for making that happen.

***

And if you take a look over at 5 Minutes For Special Needs you will notice that we got a makeover! I love the new look. Don't you? I also wrote a little something about a little something new we have going on here. Maybe.


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Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}

Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Places to Peek This Week

In a bit of Austin related news, we have an appointment with the Plastic surgeon tomorrow (yes, Saturday) to get the final sign-off and hopefully a date for his Jaw distraction surgery next month. Please send us some good thoughts. This morning (weather permitting) we are off to enjoy the beach!



***


Exciting news!! I have been invited by Children's Rare Disease Network to blog with them. Yay me!! My first post about Privacy vs. Advocacy. Hope you'll check out some of the other information & resources.





***


I reconnected with my friend, Sarah, this week and my 5 Minutes for Special Needs post was about her daughter Mila. Check out her cuteness!!





***


Speaking of cuteness check out the pictures on Early Childhood News, in honor of National Hug Your Kid Day, July 19th.

Cute! cute! cute!


***


This is the LAST day to vote for Bunchland's BlogHer contest.




I would really appreciate it if you could please take minute to register and vote for me today.

***IMPORTANT*** You may vote ONCE per hour.

I want to THANK everyone who has voted this week so far. I have to give a special shout out to my friend, Juliette for rockin' the vote on Twitter like a maniac.


***


In other news, I published an article on She Posts about the awesome Twitter Charity hats that Mommy Perks is wearing.


***


And lastly, my post to win a trip to BlogHer (writing contest) was chosen as a finalist. The winner will be announced sometime today. Although I don't expect to win, it was nice to be recognized in my category.


***


Have a great weekend!!



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Subscribe here for a daily Sneak Peek at Me {and my not so "typical" family}


Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Welcome to Just Sayin' Saturday

You never know how strong you are, until being strong is your only choice ~ Unknown


This is something I have learned the hard way. And it is so very true. The key word for me would be choice. Some people can decide not to take on being strong, not to fight for what they believe in; but those that do...watch out!






Do you have...

A favorite quote to share about overcoming adversity? 

A saying that inspires you or others? 

A special needs blog that needs some love & attention? 

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on an upcoming Saturday.

This is a new feature I will run throughout the summer because I'm lazy I find so many quotes and websites that I love to share. I'm going to call it "Just Sayin' Saturday".{I can keep putting my favorites sayings here, but I'd love to hear from you.}


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What In The Heck Is She Talking About Now?

In order to demystify my world a little bit I am about to crack the code let you in on some FAQ. I realize Special Needs (SN) parents speak and write in our own lingo.

Here are some terms I use regularly in my articles that you may not be familiar with (in no particular order, except for the ones that are obviously in alphabetical order.)

PEOPLE:

The Breakfast Club: A name I gave to our Intensive Feeding Therapy Team. You can read all about them here and here and here. It is quite the ongoing saga.

And as long as we are mentioning sagas...let's talk about the {former} Nurses, shall we. I know you may have a hard time keeping them all straight.

The Pointy Nurse

The Smoking Nurse

The Choking Nurse

The Overdose Nurse

The Nurse I Stalked

(You're welcome.)





OT: Occupational Therapy. Trained personnel who focus on teaching every day activities through play. We focus on Eating & Drinking.

PT: Physical Therapy. Trained personnel who focuses on developing Gross Motor Skills and muscle function.

Pulmo: A doctor specializing lung function. Also know as the Head Honcho who runs this show.

GI: A doctor specializing in stomach, gut, intestinal function.

DHH: Deaf & Hard of Hearing; a teacher/program provided by a school district to teach ASL and deaf culture to children & their parents.


PLACES:

Who am I kidding the only place we regularly go to is the hospital. Boring.

Although there was that time we went to Disneyland

Lest we forget what happened at the Petting Zoo

We had the most fantastic experience at Build A Bear and The Beach.


THINGS:

AFO: Ankle Foot Orthotics - aka: Braces

ASL: American Sign Language

Aural Atresia: Medical term for missing inner ear canal

BAHA: Bone Attached Hearing Aid, pronounced like Baja but similarity with Cabo San Lucas ends there.

Branchio-Oto-Renal Syndrome: A genetically inherited disorder adversely affecting several systems of a developing fetus: Branchio = neck, Oto = ears and Renal = kidneys. aka BOR.

Broncho Pulmonary Dysplasia: Another fancy name for Chronic Lung Disease.

Extension: long tube used to deliver meds, formula or water to stomach via Mic-Key, nothing to do with phone or Kate Gosselin's hair.

Go-Bag: A bag that must be carried at all times containing emergency medical supplies in the event of Trach or Mic-Key removal.

Hemifacial Microsomia

MBSS: Modified Barium Swallow Study - a very expensive look at your anatomy (mouth/throat) function via X-ray vision. Requires you to eat radioactive food.

Mic-Key: Gastrostomy tube site, nothing at all to do with Mickey Mouse. aka: Mic-Key button.

Microtia: medical term for missing outer ear (pinna)

PulseOx: A machine that measures Oxygen via a probe attached to toe or finger. Also measures heart rate. Usually found in a group of other equipment.

Sleep Study: Usually an overnight study done in a hospital or lab during which different brain and breathing (respiratory) functions are measured using a ton of wires attached to the head, face, and chest. A therapist watches you via night vision. aka Sleep Deprivation Study to those of us who attempt to sleep.

Trach: Tracheostomy tube. May be referred to by maker ie: Shiley or Bivona.

URI: Upper Respiratory Infection

This list is not meant to be all encompassing and may be added to from time to time. It is also MY list for explaining things & people in our lives, so other SN parents may have different frequently used terms.

Do you have any things that need explaining too?


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Barnyard Petting Zoo

We decided to take a trip to the local petting zoo to visit the animals.








I just wish the entire visit was not such a disaster blur.


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The Saturday Evening Blog Post - May 2010

Welcome to THE SATURDAY EVENING BLOG POST, where bloggers gather on the first Saturday of each month to share their personal favorite blog post from the previous month, hosted by Elizabeth Esther.








May was a busy month around here. Two nurses on vacation and Austin happened to get a really bad, case of something that turned into nearly 10 days on him requiring Oxygen 24/7 and some pretty powerful antibiotics. There were way too many long nights. I It was a mess.

Right smack dab in the middle of all of that we celebrated our 1year Blogoversary and Mother's Day. On both occasions I was reminded that many mothers have walked in my shoes. My choice for my favorite blog post was an easy one: Where I Draw My Inspiration.


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What Is The Importance Of A Family Vacation?

For a parent of a child with special needs the words "family vacation" congers up all kinds of feelings. The first thing that comes to mind is "lists" then "packing", quickly followed by someone get me a sedative.

Oh how I would love a vacation.

A vacation right about now would be a dream come true, especially if someone else worried about the lists and packing. I would pin a note to my shirt that said 'Wake me when we get to Tahiti, Hawaii, Paris or Guam!' Heck, I wouldn’t care where we went as long as we got to go somewhere and RELAX. {It also wouldn't hurt if someone is there to serve me some fancy drinks with umbrellas while I sit by the pool.} Just sayin’.





I vividly recall our family vacations from when I was little; they mostly consisted of camping or road trips. Very little in the way of fruity drinks and relaxation for my mom, but boy oh boy were they fun. My parents weren’t made of money, but they were adventurous and we have the pictures to prove it. There were no exotic locales or cabana boys.

There were tents and camping equipment packed in our VW bus. There were mosquitoes and port-a-potties. There was laughter.

Okay, sometimes there was some screaming, if you count the time our campsite got attacked by bears in Yosemite and the time my sister fell in a running stream in Sequoia. But mostly it was fun.

That is the kind of tradition I look forward to passing on to Austin. {Of course my one exception to roughing it is electricity, but that's what cabins and hotels are for, right?

So even if I have to prepare lists weeks in advance and pack ten million and one things, I am going to make sure he gets to experience the fun of a family vacation. Because really the important thing wasn't the destination, it was the memories we created and every child deserves to have those.


*****


Disclosure: I am writing this post to participate in theGolden Inn Resort “What is the importance of a Vacation” sweepstakes for a chance to randomly win a full conference ticket to Blogher 2010. You can learn more about the Jersey Shore Resort and contest at their blog http://www.GoldenInnResort.com/vacationtips.

photo: Gary


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Priceless Moments

Pictures are worth more than a thousand words, often they render me completely speechless.

During the early months of Austin's life I took lots of candid pictures at home, still do. But interestingly enough the ones that are beautifully framed and displayed are the ones from the portrait studio. Funny how that works.

When we were little my mom had us in the Sears portrait studio all the time. And I do mean ALL.THE.TIME. Oh my, now we look back on those pictures and laugh at our 70's hairdos, matching outfits and those silly childhood expressions. Priceless.

I'm sure someday Austin will look back on these pictures and think 'Oh, mom...why that shirt? and the hairdo? Why do you still have this picture out? I'm not even looking at the camera.'





And I'll respond, 'Don't you see it? You're not looking at the camera because you are looking at me. And I was waiting to catch you.'

When I look at this picture I remember a one year old child who couldn't even crawl, let alone stand, and here he is on his own two feet. That wonderful photographer captured that perfect moment.

How she did it is beyond me. I was terrified of letting him go, but he did it...for a split second he did it!


Speechless.


Priceless.


There are many priceless and picture worthy moments happening every day. And this year's BlogHer conference is no exception. A group of savvy Latina bloggers are going, and not only are they going, but they are hosting a panel AND a party.

I need to be there to capture it all on film. I need to be there to celebrate all that we bring to this wonderful blogging community. Someday I'll look back at the pictures and think, oh that dress, oh that hairdo...but I'll revel in knowing I was there.


Disclosure: This post is a contest entry, but the picture and words are my own. Sears Portrait Studio is giving away a two-day, full conference pass for one lucky mom to attend BlogHer in New York City, August 6-7, 2010.


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Traveling With A Special Needs Child

Every single thing on this luggage cart {except for the black dress} was for Austin.

For one night away! Jealous much?



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The Saturday Evening Blog Post - March & April

Welcome to THE SATURDAY EVENING BLOG POST, where bloggers gather on the first Saturday of each month to share their latest and greatest blog posts from the previous month, hosted by Elizabeth Esther.




This month features my favorite posts from March and April.

Looking back at my March archives it was not too difficult to chose which post to highlight. I had an awesome opportunity to participate in a writing contest. My entry was chosen as a Top 10 Finalist. Not too shabby, eh? I wrote about my loving Special Needs community.

Unfortunately, I got word this morning that I was not the Grand Prize winner. But that's okay, it allows me more time to devote to writing and advocating right here.

April was another story altogether, so many things seemed to go wrong last month it was really hard to narrow down just one post to highlight. It was a particularly jumbled month, both medically and personally.

But in the end, I did decide that the medical diagnosis post would probably be most helpful to new readers wondering, what makes this kid so special?

On a positive note, in April I began writing a weekly blog over at 5 Minutes For Special Needs. I am having a fantastic time as a contributor, every Thursday.


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Full Speed Ahead

Today is Blogging Against Disablism Day, around the web posts will be written reflecting different perspectives on the topic of disability discrimination. Please do take some time to read them.





Tomorrow Austin will be 2 1/2 years old. Time has flown by at an extraordinarily fast rate. And it is so true, if you blink you miss it.

Of course there are many moments in the past when I wished I could have done just that, blink. If I blink I will miss this...then it never happened. Unfortunately life doesn't work that way.

We've had a rough two weeks. Heck, I'll say it, it's been a rough two and a half years!

But I am determined not to let these latest setbacks chart the path. Yes, he has to keep the Trach for a lot longer than I ever imagined. Yes, it is clear I need to continually monitor his care. Yes, we are in a dire financial situation.

No, we are not stopping.

I will keep advocating for better care, better equipment, and a better plan.

I will not allow other people to get me down or drown me in their pity.

I will continue to find strength in my community.

I will continue to celebrate the inchstones and the anniversaries.

I will keep writing, encouraging, motiviating, and offering to this wonderful cause.

I will be there to support you when you are down.

There is great strength in our community, I am reminded of that everyday when I read the beautiful and supportive comments. Rest assured, I am facing the coming days with my eyes wide open. I don't want to miss a moment of this great journey.


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The (Life Of The) After Party

My sisters are going to have a good laugh with this blog post title, because I'm so NOT! But it's my blog and I get to say whatever I want, so humor me.

This past week was a real rollercoaster for me. While some great things happened for me professionally, it was a pretty low week for me personally. I'll hit the highlights.

I participated in 5MinutesforMom's Ultimate Blog Party and found so many great new blogs to read and gained some new readers myself. {Welcome!} Everyone who visited was complimentary about Austin and this blog, which was really nice to read.

A few of my new UBP favorite reads are:

1. Twofermom
2. 4Tunate
3. Tractors and Tire Swings

I hope you'll check them out.

The Ultimate Blog Party was a blast! As a matter of fact, today I found out I won a $50 gift card to Build A Bear. You may recall, we took Austin last summer and his dinosaur had some major surgery. Next time he can get his own bear and some more costumes.


*****


On Monday I woke up to this:





OMG! Amazing! I was floating all day. I posted an entry for the Mabel's Labels BlogHer contest last month. While I had hoped it would catch the eye of the judges, I knew the competition was pretty stiff. There were 136 entries, and i am in the Top 10. I still have to wait until May 1st to find out who the Grand Prize winner is, but honestly just getting this far has been a DREAM!


*****


On Thursday nights I try to attend the #LATISM party on Twitter. It's a very supportive group of Latinos in Social Media and the topics range from the Census, to raising money for the Chilean EQ victims, to personal/business finance. The party starts at 6PM PST and that's usually dinnertime here. So I always end up at 'the after party' where we chat about whatever stuff we all have going on in our lives and on our blogs. This past Thursday they had a special after party giveaway.

On Friday I was delighted to see this:





*****


It was a bittersweet week for sure. If you missed the lowlights you can read about the results of Austin's sleep study or the nurse who overdosed him.


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Sneak Peek At The Ultimate Blog Party

I am enjoying writing for at 5MinutesforSpecialNeeds so much that I decided to hop right into some fun at their sister site 5MinutesforMom.

This week is the Ultimate Blog Party, where bloggers introduce their sites, link up and hop around the blogosphere discovering new treasures. The magic word: Party!!!





Welcome to Sneak Peek At Me, my little corner. There is never a dull moment here, guaranteed! I'm Janis, a busy single mom raising a toddler with special medical needs.

And this is Austin.




Over the past 10 months our little blog has grown, as have I. A blog that was started for therapeutic reasons has become such an amazing part of my life. I have had some really great opportunities to connect with special needs moms across the globe, what an amazing testament to the power of social media.

You can find us on Twitter or join us on Facebook.


The ladies over at 5 Minutes for Mom want to know which prizes I like best so of course the Grand Prize Toshiba laptop is #1.

My other top prizes in order of preference are:

#US 39: Be My Guest certificate at any Hilton Garden Inn.

#INTL 2 A custom Wordpress blog by Uniquehorn Designs.

#USC 17: $200 Apple Gift certificate provided by CmomGo

#US 104 – Shoot Me Now is giving away one $50 Visa Vanilla Gift Card.

#US 19: Prize package of Preschool toys by Hasbro.

#US 72 Your Shape Wii fitness game w/ tracking camera provided by Kristie's List

#US 105 – Get Fit Pack provided by Green Mom Wannabe

#US 112 – $50 Amazon Gift card provided by Robin

#USC 3 – A $50.00 Target Gift Card provided by Peggy Gorman

#USC 15 – $50 Target gift card provided by Haley Quarles

#USC 37 – One winner will receive a $50 gift card to Amazon.com provided by Shasher's Life

#USC35 $50 USD Cash PayPal transfer by American Muslim Mom,

#USC39 $50 USD Cash PayPal transfer by MomDot

#US 71: $50 Build A Bear Workshop certificate provided by Lisa Schwab

#USC 17: $200 Apple Gift certificate provided by CmomGo


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Community, Conferences and Awards, Oh My...

There are quite a few things exciting things going on around here.

I have added a Community feature to Sneak Peek At Me, courtesy of The Blog Frog. So now in addition to our Facebook Page you can stay connected with other readers and swap ideas and vent, if needed. Check out the new design and let me know how you like it.

I hope you enjoy this new feature as much as I do.


*****


Sneak Peek at Special Needs: Recently I have have had some great opportunities to work with some really wonderful people. Just in case you missed my recently published articles, take a gander:

Complex Child: April Issue (Perspectives)

5 Minutes for Special Needs: Ready to Fight

Praying For Parker: Life On Hold


*****


Oh the Places I {Plan to} Go

I am planning on attend my first ever blog conference in September. I had the opportunity to bid on a pass for Type-A Mom conference and I won the silent auction. {Cheap!} So by the grace of God I will be going to North Carolina in late September. Now I need to figure out how to pay for the airfare & hotel portion of the conference. {Anyone?}

If I happen to get REALLY lucky I just may win an all expense paid opportunity to attend BlogHer conference in August with Mabel's Labels. It's in New York City! In case you missed it, you can read my entry here.  I am already a Mabel's Labels BuzzMama {feel free to ask me about it.} But oh what an opportunity to blog for money {gasp!} and have a sponsor for BlogHer. Keep your fingers crossed please, I am up against 135 other talented bloggers.

*****


Just in case you've been wondering about my Wii Fit Plus Adventures, I've lost 4 pounds in 28 days.

Week 1: A Whole New Mii
Week 2: Meet Mini Mii
Week 3: Calories, Calories, Calories.


*****


Blog Love: Recent Blog Awards

Unfortunately, I did not win a 2010 Blogs By Latinas Award, but I did not walk away empty handed.

Thanks to Cristin I am the proud owner of The Prolific Blogger Award. (I think that means I talk a lot.)

The Rules:

1. Every winner of the Prolific Blogger Award has to pass on this award to at least seven other deserving prolific bloggers. Spread some love!

2. Each Prolific Blogger must link to the blog from which he/she has received the award.

3. Every Prolific Blogger must link back to This Post, which explains the origins and motivation for the award.

4. Every Prolific Blogger must visit this post and add his/her name in the Mr. Linky, so that we all can get to know the other winners.

My seven recipients are:

Tammy (Praying For Parker)

Jenny (The Bloggess)

Lisa (My Version of My Life)

Heather (Team Carter)

Greg (Telling Dad)

Melanie (Modern Mami)

Heather (Our Incredible Journey)


Also, not be outdone Annissa bestowed upon me the Beautiful Blogger Award.

The Rules: I have to award this to 7 + 7 beautiful bloggers.

I'm gonna cheat (Shhhh!) The 7 prolific bloggers listed above, y'all deserve this one too. Now for the next seven...

Susan (Ainsley Rae)

Christy (Life Since Harlie)

Karin (It's All Good)

Sarah (Nehi Momma)

Cristin (Tiptoeing through the Tulips)

Ellen (Love That Max)

Ellyn (Profoundly Seth)



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Do You Wear Designer Genes?

In the US alone, nearly 30 million Americans suffer from one of 7000 rare diseases, that's 1 out of every 10.  Multiply that by each of their family members and friends, that's a lot of people affected by a rare disease.  The names are hard to pronounce, the symptoms difficult to deal with, yet none of that matters. Every day parents watch their children struggle just to live and in many cases they die waiting for an answer. Personally, I know of far too many Angels.

Now imagine this is your child and you are one of those people.  Wouldn't you be begging for help too?



Speaking from personal experience, having (a child with) a rare diagnosis is a difficult road to travel alone. It makes support and more importantly, information vital.  Sometimes worse than being 'undiagnosed' is having a rare disease diagnosis because there aren't many resources available to help newly diagnosed families.  You are in a haze of doctors and opinions with often no one to turn to.

Our own genetic journey has spanned over twenty-seven years and today we are no closer to an answer than we were the day we started. But we are hopeful that someday researchers will crack the code and we will have our answer.  In the meantime, we will continue to treat the symptoms and conditions that our desiger genes carry.

Since I have started blogging I have "met" a handful of families that are also diagnosed with Branchiootorenal Syndrome, that's five more families than I knew nine months ago.  I know we are not alone, but we need your help.

"The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope." ~ Rare Disease Day 2010 website




There's a movement, you can be a part of it. All you have to do is wear your favorite jeans on Sunday, February 28, 2010.  That's it. Skinny jeans, Bootcut, Designer, Acid wash, I don't care...as long as you support hope.

Some causes get a ribbon, we get an entire article of clothing that's how important we are!!

The Global Genes Project and Children's Rare Disease Network  are teaming up with International, National, Parent organizations and bloggers from across the world to promote World Rare Disease Day, it's a grassroots awareness effort. 


Discovery Health will air the World Premiere of Disease Detectives, based on real-life cases from the NIH Undiagnosed Diseases Program, on February 28, 2010 at 8PM, check your local listings.


Thanks for peeking,

Extreme Makeover: Blog Edition

Do you need a makeover?


Does your blog?

Well I can get you some help for your blog. And if you find someone giving out makeovers let me know will ya?

A few months ago I stumbled upon Blogs by Mandy. I actually wasn't looking for a blog design at the time. But I knew if I was going to do one, I would hit Mandy up in a second. Let me tell you why.

I found her blog while I was researching Survival Mode Parent. Remember the post I wrote about a new non-profit helping parents of children in the NICU? Yes. That idea was her brain child. Don't you just love her already? I do.

Well because she has more energy than I can muster she doesn't stop there; Mandy also has a blog design business. Every month she donates a portion of her proceeds to one designated charity.

How awesome is that?






So guess what?

November is Austin's Birthday month and Blogs for a Cause has agreed to donate 20% of all blog order profits from November 1 to November 30, 2009 to his favorite charity, Children's Craniofacial Association.

COOL!

Have you been considering starting a new blog? Does your current blog need a face lift? Need a carnival button? A new header?

Take a Peek at Mandy's portfolio and start ordering.  Let's keep Mandy busy in November!

Of course if your blog is perfect as is, you can always donate directly to Austin's page.  You know...to celebrate his birthday, just like you did for mine.


Thanks for peeking,

Bloggy Karma

If you head on over to Tip Junkie today, you'll find me as a featured tipster! Today's Teach Me Thursday topic is Organizing...and, um yeah you guessed it, one of my tips is being featured. Finally my obsession pays off! Yahoo!




Then, if you are feeling lucky or just you like to enter Contests you can head on over to Not So Average Mama. I was hanging out there one night earlier this week for a LIVE Giveaway. Lo & behold, I won the prize! I won a 12 month Sam's Club Membership worth $100.00. Double Yahoo! So check it out she has lots of great stuff, maybe you can win something too.


Thanks for peeking,

Mom's Needs A Night Out (or How I Almost Became A Celebrity Stalker)

Mama has been BUSY this week!!!

Last Sunday I attended the U2 concert @ the Rose Bowl with my sisters. Our seats were awesome and the entire night was great. The Black Eyed Peas opened and they were very energetic and LA natives so it was a A LOT of fun. They really pumped up the crowd. Getting in & out of the Rose Bowl was NOT fun, but we survived! It was my first night out in almost a year. {GASP!} U2 did not disappoint!






I know, I know you probably watched it on YouTube (how cool was THAT!) But here is a snippet...LIVE from Section 11F, Row 14, Seat 15 (aka: my seat).





Then continuing with Mom-Needs-A-Night-Out theme, on Tuesday my Aunt B came through with some tickets & a paid parking pass to the Michael Jackson's This Is It movie premiere event @ LA LIVE. HELLO! More fun!

Our movie tickets were for 10:10PM, we arrived early @ 8:30PM and valet parked. We were feeling pretty hoity-toity, if I do say so myself. As we sauntered through the LA LIVE complex we passed the red carpet staging area which was now empty, we saw the beautiful chandeliers. So pretty.



As we passed the Nokia Theater someone directed us to walk along a certain path, he was directing others to another parallel path.

It was COLD...yeah this is LA we are not used to COLD weather. Add to that it was WINDY. I was walking slowly because it was like a scene out of Winnie The Pooh and the Blustery Day.

Right along side of me was a woman dressed to the nines in black. At first glance I thought she resembled Angelina Jolie, her dark hair was up and I saw a glimpse of pouty lips. Then she laughed and spoke and there was no mistaking it.

It was Jennifer Lopez. Walking. Next. To. Me. or rather she was trying to walk, because, as I said she was dressed to the nines in black platform heels (cute!) and it was so windy we were being blown backwards. She was struggling and laughing as she tried to put on her jacket, walk & steady herself all at the same time. Still looking gorgeous! If not for that silly metal fence I would have reached over and helped her, but instead I took this lame picture.



No, that's not snow those little white spots are debris floating around us. I told you it was WINDY!! So I will just say this. My camera kinda sucks for these types of situations. Moving. Quick. Spontaneous.

Then after all that excitement. We waited online. Got some Starbucks and came back to find a crowd forming at the stairwell. The celeb party on the roof of the parking structure was winding down so I ran over and...



Hello Paula!

I got a few other shots of various body parts and blurs that were Larry Birkhead, Ian Zeiring, Jermaine Jackson and Forrest Whitaker...but like I said my camera was not made for celebrity stalking.

I guess I will just have to keep my day job as Dr.Mom.


Thanks for peeking,