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.
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.)
((leaning on elbow))
Ok. Pretty amazing stuff, right? Get yourself together.
|A recent shot of Madzilla sitting in Granny's very chic toy box.|
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.
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.