Friday, April 1, 2011

Mad Max - Beyond Onion-dome

(No April Fool's Day Schtick today. I am a spoil-sport-party-pooper. The Baboos and I did stuff Special Agent's work vehicle with CLOWNS to scare the hell out of him for the day....but we also did that a month ago.  For a tough guy - the boy is seriously afraid of clowns. Once a clown headed to a party was behind him in traffic and he almost had a nervous breakdown since clowns were following him. This makes it all the more hilarious. But, I digress. )


I am headed to San Antonio this month with my twin sister, my nephew and my wild and crazy special needs niece, Madigan/MadMax/Mads/Madzilla. In order to tell you later about my upcoming trip and how it probably led to MY subsequent hair-pulling-out baby-fit at the Alamo, I have to tell you about these great kids.  Here they are: 



Look how big and healthy they are - Love them!
If my sister weren't holding them, one kid would be IN the tree
and the other would be a speck in the field behind her. Luckily my sister LIKES to run.


I could tell you the whooooole amazing story, but instead read this small bit of a big story below and then watch the link to really get it. It will seem sad, but it isn't. MadMax beats the odds every day. She rocks. 


Madigan and her brother Mick were born at 26 weeks of gestation (or about 6 months pregnant) after a long period of bedrest after Madigan's water sack sprung a leak. This is highly dangerous and most pregnancies terminate when this happens, or the babies become infected and it is nothing but tragic. 


Not this pair. The leaky water sack remained intact and sterile. My sister stayed in bed for FOUR weeks, letting the babies cook as long as they could before the inevitable early delivery occurred.  


When they were born, they were 1 pound 10 oz and 2 pounds; I forget which was which. (They looked like plucked chicks with alien arms. Their heads were the size of crabapples.) I talked to them with my face smashed against the incubator glass. Luckily, they wore shades and couldn't see my scariness. But they could hear me, so they knew about the layers right off.


They stayed in the hospital a relatively short time before coming home. They didn't even need oxygen! They were troopers. They grew and grew into fat guys. 


Then, Mads started doing some weird startle-looking thing. The pediatricians blew it off. Several times. We non-medical types researched it on Google and suspected they were a type of seizure called "Infantile Spams". We were right. It never felt so terrible. Lots of specialists and medicine later, the dangerous spasms stopped, but generalized seizures started and Mad's global delays became apparent. (Her brother is a crazy-smart-borderline-genius-who-makes-his-mother-frazzled, luckily. His only delay is getting ready for school in a reasonable time frame - which seems to be inherited from my kids.)  


It sucked about Mads and we watched her go downhill to a moon faced and then pale and medicated child who fell often and was bruised and stitched from crashing into things. As her seizures got worse, her Mom got desperate and after a few slammed doors, she managed to get in contact with THE ACTUAL NEUROLOGIST (not a nurse, not staff, the doc just answered his own phone) who would eventually lead my sister to the decision to perform a hemispherectomy on Madigan's seizure riddled left side of her brain. 


Hemispherectomy:   Surgical removal of a hemisphere (i.e., one-half) of the brain, usually performed to control otherwise uncontrollable epilepsy


You heard me people. Madigan is running around this earth with HALF A BRAIN. Half a BRAIN. That bright and shiny kid running around the house, laughing and wrecking the joint has no reason to have motor skills, speech, recognition or any cognitive thinking. This is the same kid who, if we don't monitor her closely, will secretly scram from the house and head down the road. This is the kid who will fully manipulate newbie therapists who don't know her well enough yet. Having half of her brain disconnected actually made her BETTER.


It's shocking
It's amazing
It's WONDROUS


See for yourself. Mads is a few years older now and was just awarded the "most improved student" in her class. ((beaming))


Maddie's 2-year seizure free anniversary


(getcher kleenex box - there is a good ending, but it takes a bit. Also, ignore the Mouth-Breathing Douche (MBD) with my sister. He is no longer sharing our airspace, thank God.)


I'll wait. 
((leaning on elbow))


Ok. Pretty amazing stuff, right?  Get yourself together.


A recent shot of Madzilla sitting in Granny's very chic toy box. 
Anyway....Mad Max has been given a *free* trip to Morgan's Wonderland, in San Antonio, who describe themselves like this:


 Morgan's Wonderland is located in San Antonio, Texas. It is the World's First Ultra Accessible Family Fun Park designed specifically for children and adults with special needs, their family members, caregivers, friends and the entire community. This 25-acre park is a unique oasis, that through the spirit of inclusion, allows people of all abilities to play, learn and share life changing experiences together, in a fun and safe environment.


Cool! 


Thanks to the Make A Wish Foundation for sponsoring us and to whomever recommended my sis and kids for the honor.   


There will be frustration and crying on this 5-day long jaunt involving zoo, Morgan's park, Alamo and Riverwalk visits (and hopefully some margaritas and tableside guac).  


Hopefully the kids will be able to put up with us. 


My twin sister and I love each other, and have so much fun when we are not secretly wanting to slap the shit out of the other. It's a twin thing, I think. We'll need naps. And snacks. And margaritas. WINNING! 


My picture ain't great of either of us (horse face anyone?) but
for some reason I just luuurve it.
My sister is also a lot skinnier than me now.
Let's hate her, shall we?

Mads  and Mick are going to go cra-zay with fun, and so are we. After a long, hard year with the Mouth-Breathing Douche (MBD) pulling a lot of crazy stunts (before a glorious finale of getting gone) Sister's little fam-dam needs a fun trip. And I am lucky enough to get to go along for the ride. I am taking MBD's spot. hehe...Take that, sucka. 

20 comments:

TCA1974 said...

You all deserve this! What a fun trip! Steph is the the strongest woman I know and the best mom! You all have a grand time on your trip!

Blondie said...

LOVE this Stacie! I had no idea about Steph's kids/story.... wow. I'm proud to say, my little community of Green River and Rock Springs High Schools raise a TON of money for Make A Wish every year... I also have a friend who had twins at 23 weeks,(there was a third baby Landon that didn't make it) so this is especially inspirational to me! Thanks for sharing!

Cjengo said...

Awesome! Hey when you get to Morgans Wonderland look at the lighted butterfly stepping stone in the walk of fame. The name "Emily Lites" is my daughter :). She got it for her work with children and the disabled.

Nicki said...

That was a wonderful video. Truly. What a great song, too.

I hope you have a blast with your twin sis and the fam! And I have to say--it's a compulsion--that both kids are freaking ADORABLE. Like, enviously so.

And as for your comment on the LH....thank you. Sincerely.

Jawnie said...

I am always so happy to see the kids out the in-laws back door (they share the back fence - if no one has moved)...reminds me I need to come home more often. Hope you have LOTS of fun!!

Danger Boy said...

Awesome post, awesome kid, awesome family.
Enjoy the trip, and I highly recommend having dinner at one of the restaurants on the Riverwalk that have outdoor dining. Watching the boats go by while the Mariachi are playing is friggin' sweet.

Anonymous said...

amazing, wonderful and beautiful woman..

Anonymous said...

Love the writing, Stac!! You four have fun and do have a couple ritas for me!! Love U JGram

Emily said...

You have an amazing family. I hope you all have fun! What beautiful kids!

Amy Sumner said...

The trip sounds amazing! Congrats to little Mattie! I always love reading about her moving right along with life. I think our family is pretty awesome...

Jones Family said...

Onion!!!!!!!! I live in San Antonio.

send me a message with your snail mail addy and I will mail you an AMAZINGLY huge book of coupons for this area. I have extras. It's that entertainment book and there are a TON of them!

Jonesie~~

Jones Family said...

Ok, now that I went back and read OMG! What an amazing story and family!

Morgan's Wonderland is soooooooooooooooooo fun! A few tips. Bring snacks, and water/drinks. There is no place to buy these on the grounds except I think a vending machine.

You HAVE to try out the water works station. It's soooo much fun! Be prepared for them to get soaked even though it's not a ride or anything they will get soaked building with the PVC pipes and so forth.

Bring your camera. TONS of photo ops. The carousel is amazing!

Here is a link to a post that I did on our trip to Morgan's Wonderland.


http://msjanetjones.blogspot.com/2010/11/carousels-and-all-their-glory.html

We live right around the corner literally and get to go often as 2 of my kiddos get in due to a disability as well.

Jonesie~~

Anonymous said...

I am Blessed to know Steph & her twins. They are remarkable! I hope you all have a lovely time during your vacation! Bren

Reptiles in the Ice Cream said...

Does that mean you will need to breathe through your mouth the whole time? Don't pee on the Alamo, no matter how many margaritas. And it is wonderful to see the twins and Steph doing so well.

Lance said...

Those kids are baby duck adorable

Mrs. Tuna said...

There will be frustration and crying on this 5-day long jaunt.......hopefully the children will put up with all your whining.

Have a geat time.

Jean Cumbie said...

How awesome is Madzilla! You are probably one of the world's greatest aunts, and cheers for the disappearance of MBD!

Sandra said...

OMG this is so fabulous! I'm supposed to be doing homework on tracheostomy care, but come on, this is so much more inspirational and fantastic! Your niece and nephew sound like handfulls, but obviously they are worth every trip your sister has to make out into the field running at top speed to catch those treasures! GREAT post!!!!

Elle said...

Wow. Thanks for making me bawl like a baby! That is amazingly, inspiringly fantastic. Love the video. Congrats to your Mad Max!!! : )

Miss Tracey Nolan said...

What an incredible story. Thanks for sharing! I'm having the best time reading through your archives, btw!