Monday, April 21, 2014

The Value of Stories

Elise has a lot of tendencies that spectrum kids have, one is that everything is taken literally. 

It can frustrating and funny.

It is very difficult when you are talking about things in a more spiritual realm.  It is particularly difficult if you want to discuss religious aspects of life.  Those of us who believe that the religious realm is fact, come up on an very abrupt wall of inability to comprehend. 

You know how there are no nebulous theories to a 2-3 year old?  Well, when you are stuck there mentally for longer than others, its hard to figure out how to explain it so it makes sense.

I have always been a firm believer of:  "If you can't explain it simply, you don't understand it well enough."  ~ Albert Einstein

With the kids, and Elise, up to a point, I don't think you really need much more than "Jesus loves you."  But the longer life went on, and she didn't really progress past the toddler comprehension, the more it laid heavy on my heart, that there had to be a way to explain the Easter and Christmas gift of Jesus in a way that she could understand it. 

Jesus himself, was a big proponent of simple stories that made huge truths more comprehensible.  In Christian circles, there is a lot of throwing around of parables, and using them primarily with kids.  There are sappy and annoying definitions of what parables are...they have always irritated me and I refuse to even quote them here, because I am still of the mind that if you can squash phenomenal theology into a off-the-cuff meme that makes you sound condescending, then you've also managed to destroy it for yourself.

ANYWAY, as I said, Jesus often took real life situations that everyone can relate to, and tied it to a truth of life.  In his simplifications, it wasn't offensive, and no matter if you believe in Jesus/the Bible, you can't fault the honesty and wisdom in them.  Which is why the default on Jesus is "Yep, he's a great teacher."

SO.  He didn't give me a parable in the Bible for his death and resurrection.  And neither did my good buddy, Paul...who also was a fan of stories that explained huge truths... 

BUT C.S. Lewis did.  In the series of Narnia, we have beautiful stories that may or may not have been meant to explain bigger truths.  They are deliciously written, and regardless of your theological leanings, I highly recommend you grab them, and give them a whirl.  And if you aren't a reader, Disney has managed (for once!) to recognize a story that didn't need any dabbling...and the Chronicles of Narnia movies are stellar.


But, Elise is completely taken with Aslan, and all the characters.  She is completely sucked in and enchanted with the story.  She understands it on a very organic level, and she loves it and feels it all deeply.  And, Folks, she can discuss it on a level that she cannot vocalize Jesus on.

And so, we have a tradition of watching at least the first Chronicles of Narnia movie on Easter weekend.  And we will have shocked gasps about the story of Jesus, "Just like Aslan!!", periodically.  And the books are even fuller of "Muchier Muchness"...and I, too, have taken to feeling the gift of Easter on a more organic and less theologically structured manner...and the Muchness of Jesus has struck me more and more deeply every year.

And, I wrap up with the same offer and I put out on the blog's Facebook page:  "Jesus used parables to explain The Important Stuff, take a page out of his book. Figuratively and literally.

Lots of love from us. Please don't hesitate to message me if you want support or want to ask any questions about Jesus, Aslan, or Easter!!"  Emails and or messages are more than welcome.
"It isn't Narnia, you know," sobbed Lucy. "It's you. We shan't meet you there. And how can we live, never meeting you?"
"But you shall meet me, dear one," said Aslan.
"Are -are you there too, Sir?" said Edmund.
"I am," said Aslan. "But there I have another name. You must learn to know me by that name. This was the very reason why you were brought to Narnia, that by knowing me here for a little, you may know me better there."
C.S. Lewis
Happy Easter! 
Here's my gal yesterday, enjoying a quiet moment with her brother!


Monday, April 14, 2014

Easier than Discrimination

Nowadays, it's not acceptable to discriminate and segregate.  There are laws in place.  They protect color, religion, disabilities, and really almost anything you can think of.

They don't, however, protect against mean.

You can pretend to help and allow a "them" to be "a part" of you.  You can say the right things, you can publicly posture, you can go through the motions.


You can make things too hard to be included.

"Sure, you can go to our *preschool, daycare, church, school, childcare, sports facility, day camp, and so on* except you will need to help us, help you with your *hard* kid.  We need a personal aid, all their medical information, all these safe-guards to help us *protect* you child, because we *just want to help.*"

So, to secure this opportunity, you obtain more paperwork than insurance, the IRS, and private school combined, to submit, so your kid can do what normal kids get to do for your name, address, and $5.  And they come back with new *reasonable requests.*  And this is literally added to the crazy sheaf they already asked you for, also, interestingly, it's illegal in many cases.  It violates The Americans with Disabilities Act.  If you ask, they usually give you some kind of rigmarole about protecting your kid or the others there, or it being a insurance/liability issue.

Here's the thing.

Sometimes we, as parents of kids with disabilities, will go along with it all to a point, so our sweet babies, can receive quality time with typical peers for their long-term benefit.  Sometimes we go along to a point, at which point, we realize that even if we win, our child will never be accepted...and they will in no way benefit from being let in, but not accepted.  Sometimes we call them to toe the line...more for shame, than expecting that this information will trigger long lost chivalry.

The problem is, if you choose not to force the issue, to protect your child from the exclusion, then they win and nothing will change.  If you do choose to force the issue, then you've forced your child to be on the front line of a civil rights war.  And do they really want to be a "point" as much as a kid with friends like everybody else? 

It's a rough line.  To make the world better for them, they literally have to be a part of the battle line.

That's a hard place to be.

Sometimes I am glad to fight.  Sometimes I get tired.  Sometimes, I tell myself that I am making life better for my daughter.  Sometimes, I wonder if it's worth fighting for people to take someone they so don't want. 

How do you change hearts?  You can make laws.  You can enforce those laws.  But until people realize that everyone has the same hearts, wants, dreams, and decides to get to know people as PEOPLE, then things won't change...  And the only way they will get to know someone, is to lock them up together...legally if need be...and friends, things will change.

That said, don't expect me to stop rattling cages...but since I am mother, it's also reasonable to expect that I will pick my battles...

But there will be battles.

Friday, April 11, 2014

Beach Bunny

We bought a vacation package at a fundraiser back in February.  It took us until the Christmas holidays to use it. 

I'll grant you that the beach in December isn't super toasty.  But it is certainly better than actual winter...even in Georgia.

All my life, we had some kind of plan for vacation.  Something we were going to do, something we wanted to see.  As a kid, my mom and dad were the types that had vacation itinerary, in which days were mapped out, if not hours.  At the first of our marriage and Gabriel's little-hood, we had skeleton plans, we knew the trip time, we had a few things that we wanted to work in...things have gotten progressively looser...but this time, we literally didn't look at the trip until we got in the car.  We had no idea of anything at our destination.  We Googled the directions when we got to the interstate.  No kidding.

We got there late at night, slept, got up, ate what we brought and then went straight out to the beach.  Then we drove around to get our bearings.  And then we just decided to decide as the days went...and it was the most purely healing vacation ever.  I mean, I don't want all of our vacations to be like this, but it was timely.

Amusingly enough, a good friend from home checked in at a local restaurant and we met up with them for an evening...

We watched TV, dug in the sand, walked, slept, and generally piddled.

This is the definition of heaven to Elise...She adores the beach.  She sleeps better, walks more, and is calmer than she is anywhere else.  I literally don't need to give her the ADHD medicine when we are at the beach.  She has no impulse control at home, but at the beach, all synapses are firing at a normal speed.  It's bizarre.  She doesn't suck her thumb from stress, she doesn't eat constantly.  It's like the sand and the wind and the sound of the water that makes my skin tired, neutralizes all her cravings and crazies...

The way the Toddler Tourette's is going concerning having to get in the car to go pick up her brother, eating supper, and brushing teeth, and I'll be pricing beach houses by the end of the month...

The Year I Missed It

This is posted over at Down Syndrome Blogs:

Every year, I have celebrated Elise's Heart Day, except this one.  It has been 12 years since she had her open heart surgery repair.  Twelve.  She's 11.  It somehow slipped by me this year, as we were celebrating at the orthopaedist office being freed from her boot after breaking her foot.

When she was born, we were surprised by the fact that she had Down Syndrome.  She had 2 ultrasounds while I was pregnant, one to confirm that I was pregnant with her and one to tell us that she was a she and that she was breech.  At the second one, they tried to tell me that she wasn't as far along as previously thought...because she was so tiny.  And they spent an inordinate amount of time looking at her pinky finger.  When they finally confirmed that she had the usual 2 joints in it, they looked no further for any evidence that she wasn't perfectly normal.

Had they looked further, they probably would have caught the Down Syndrome.  Had they looked further, they would have discovered the mess that her heart was in.

When she was born, she was shuffled home with massive apologies for missing the Down Syndrome.  And by apologies, I mean my obstetrician almost wept for not catching it, when he suggested that "other people liked to adopt Those Babies" and we didn't have to keep her.

At the pediatrician, they seemed in over their heads in dealing with Down Syndrome.  They had to look up everything like she was a foreign object, rather than a standard issue baby.  At her 2 week check up, they caught a slight murmur and suggested that we go in for some testing and visit a cardiologist, "just in case the murmur didn't resolve".

Our cardiologist was the kind of guy that gives that vein of medicine a bad name.  He was arrogant.  He didn't listen.  He disrespected us at almost every turn.  I was still barely keeping my head above water with her diagnosis at 3 weeks out and didn't have the mental fortitude to slap him down or get another doctor.

After a sonogram of her heart and an EKG, we were graduated to a diagnosis of a small hole or two in her heart in the middle dividing muscle.  They still believed that they would resolve and she was sent home.

She was still a minuscule baby.  She hadn't hit 6 pounds yet and she hadn't gained back the weight she lost right after birth. 

By January, she still hadn't wrestled her way to 7 pounds, and she had a second routine cardiology appointment, and she was pronounced in Cardiac Failure.  Suddenly the medical world started literally buzzing around us.  We had to "buy" as much time as possible.  I was to pump and mix into the breast milk both preemie formula and corn oil to get her enough calories to "live until surgery".  We were praying for not only survival, but we were praying desperately for a few extra ounces of fat to help her withstand the cracking of her chest and the toll the surgery would take on her tiny body.  The pressure was so high, and she was so exhausted keeping her heart pumping, that I was literally pouring her high calorie potion down her throat with a syringe as she had no energy to nurse nor to suck on a bottle.

Because of her size, she needed to go to a hospital that specialized in heart repair surgery.  We were given the option of Vanderbilt and Cincinnati Children's.  We jumped at Cincinnati, as it was exceedingly reputable, and I had family there.  And not only was it family, but my uncle was a doctor, had the inside track on everyone's reputation.  Based on his research and advice we chose our cardiac surgeon.  And I cannot say enough good things about Dr. Peter Manning.  Not only was he stellar technically, but he was an amazing man with a warm and encouraging bedside manner.

At the EKG and sonogram there at Cincinnati, we discovered that the holes were bigger than originally thought, and that there would be a need for patching, not just stitching.

And I noticed for the first time that a heart ultra sound looks like a butterfly.  And that as it pumps, it looks like it is flying.

They expected that her surgery would last 3-4 hours. It appeared to be a fairly easy patch job, with the only expected difficulty being that she was so tiny.  We had successfully clawed our way to 7 lbs, 3 4 months.

The surgery lasted just over 6 hours.  They got in and discovered that it wasn't a simple patch job.  That both the EKG and the sonogram had missed just how many and large the holes were.  That the holes were responsible for her having to work so hard to live...and why growing was simply a bonus miracle.  She was patched up for both an ASD (atrial septal defect) and a VSD (ventricular septal defect), and her mitral valve was also flapping loosely allowing the blood to wash back into the heart, and so he stitched that up as well, but he was very cautious in not allowing that to become too tight and cause any other problems that would lead to another surgery.  She still has a tiny amount of cardiac reflux to this day...but it's not slowing her down.

The real miracle is this:  Open Heart Surgery to correct malformations has only been performed since the mid 1950's.  Even into the 60s-70s, a child with Down Syndrome was recommended not to over-exert themselves as a primary form of treatment for heart malformations.  Into the 80s, doctors could and would routinely refuse to correct heart defects on the grounds that it was a wasteful surgery that was unwarranted.  There is even an article in the US National Library of Medicine which addresses the fact that parents were being steered away from surgery based on Down Syndrome as recently as 2001.

The year of her surgery was 2002.

The surgery was visibly a success from the moment we saw her, we knew it to be so.  Before the surgery, she was white as porcelain, and had no energy.  She slept all the time.  She never attempted to roll over or do any milestones babies her age did.

When we saw her after the surgery, moments after being moved to the CICU, we saw pink cheeks for the very first time in her life.  We saw her fighting her restraints to yank off the breathing tube under her nose.  The nurse greeted us with "I swear, she is acting like she'd like to jump off the bed and run down the hall!"

And as soon as she got home, she a made up for lost time.  She couldn't get her eyes wide enough.  She couldn't try hard enough.  She couldn't LIVE enough.

And that was the first chapter of the butterfly that is Elise.  Since then, she has fought bigger and bigger battles, but thanks to that heart of courage of hers...she is always the victor.

Monday, April 7, 2014

Meet Willow-Photo Bomb

So I wrote about picking up a puppy for Elise back in February.  We did.  We ended up with the black poodle for about 3 days.  He was not a good fit.  He and Elise bonded slowly, but he did not get along with my husband or son.  At all.  As we will be living with each other for the next 10-15 years, we need to all get along, if you understand what I'm saying. 
So, back to the shopping, and listening and praying.  And we stumbled onto this lovely.  Her name is Willow.  She is an interesting mix of a standard Poodle (3/4) and a German Shepherd (1/4), a very deliberate mutt called a Shepadoodle. 
She has been with us since the very first of March.  It is a perfect fit.  Elise adores her, Charlotte cannot get enough, my son is enchanted, Amelia thinks she is great, and she gets along well with my husband.  And I think she's amazing.
We have a trainer, but much of what we have done so far is just live together and get a sense of each other.  She innately knows what Elise needs much of the time.  When to back off, when to be persistent.  She is a very sensitive dog.  I am profoundly thankful for her intuitiveness with Elise.  It was a spectacular match from the first day. 
I look forward to bragging on her in the future.  For now, please enjoy our journey thus far.




Sunday, March 23, 2014

Covalence and Miracles

I SHOULD have been paying attention in church today...and I did, mostly...but as usual, my brain took a hiatus into other verses...and bounced in and out of comments and science...yeah...I would explain it if I could, but it's almost as much a mystery to me too, so let's hit the highlights, shall we?

There was a Venn Diagram that was put up in church as an illustration that caused it all, I believe...
I remembered a comment on my last blog post about strengths/weaknesses/similarities/compliments and Down Syndrome and "typical" folks...I was dragging my psychological feet over the "just like you campaign" and my brilliant commenter, Angel, validated my irritation that NO ONE is "alike"...and she made the comment, that she likes to think of people like Venn Diagrams, and I very seriously couldn't agree more.  We have similarities and strengths like hundreds of other people, but no one ever is really a carbon copy of the core of anyone else.  No one brings the exact strengths, with the exact history, with the exact experiences, with the exact perspectives of anyone, ever.
And because I was in church, I was struck for the thousandth time of the whole the church is the Body of Christ passage.  Even the One who made us, knew no one was the same.  Everyone brings different skills and abilities, which is why it is the Body of Christ. There are hands, feet, eyes, ears, and arms...and they all have the responsibility to report in needs, and the responsibility to do something about them.  Each part is interlinked, but they all have specialities.  I mean, check me if I am wrong, but I need my eye and my foot, but for entirely different purposes...and I need both to function smoothly in my life.
"One Body with Many Parts
12 The human body has many parts, but the many parts make up one whole body. So it is with the body of Christ. 13 Some of us are Jews, some are Gentiles,[e] some are slaves, and some are free. But we have all been baptized into one body by one Spirit, and we all share the same Spirit.[f]
14 Yes, the body has many different parts, not just one part. 15 If the foot says, “I am not a part of the body because I am not a hand,” that does not make it any less a part of the body. 16 And if the ear says, “I am not part of the body because I am not an eye,” would that make it any less a part of the body? 17 If the whole body were an eye, how would you hear? Or if your whole body were an ear, how would you smell anything?
18 But our bodies have many parts, and God has put each part just where he wants it. 19 How strange a body would be if it had only one part! 20 Yes, there are many parts, but only one body. 21 The eye can never say to the hand, “I don’t need you.” The head can’t say to the feet, “I don’t need you.”
22 In fact, some parts of the body that seem weakest and least important are actually the most necessary. 23 And the parts we regard as less honorable are those we clothe with the greatest care. So we carefully protect those parts that should not be seen, 24 while the more honorable parts do not require this special care. So God has put the body together such that extra honor and care are given to those parts that have less dignity. 25 This makes for harmony among the members, so that all the members care for each other. 26 If one part suffers, all the parts suffer with it, and if one part is honored, all the parts are glad.
27 All of you together are Christ’s body, and each of you is a part of it."
~1 Corinthians 12:12-27

If you don't want to go the Bible route, feel free to go the Covalent Bond route. 
In order for our world to function, you have millions of different combinations of atoms making up billions of different molecules that make up EVERYTHING.  But in order to make up different molecules, they bond together to strengthen weaknesses and make amazing and unique things.  An atom of Hydrogen is terrific.  An atom of Oxygen is superbly important.  But just as imperatively, we need water for life.  And so on...
And when Jesus was on Earth, he was called on to heal people's illnesses and injuries.  He was called to protect people's bodies from medical conditions that were damaging them.  He was never called on to "heal" someone of differences.  Never did he choose to do so to make their relationships easier or so someone else was less judge-y.  He was not called on to heal the kid who looked funny.  Or the man that behaved like a child.  Or the woman who flapped her hands in excitement.  He called on everyone not to judge and write someone off.  He gave requests according to abilities.  He asked for your all.  Not for all he wanted to get done.  Just your portion.  Just your talents.   I assure you we all have different talents.  I can further assure you, that everyone has one.
Find your speciality.  Use your talent.  Change someone's world.  Because if you see a need, you have everyone else's abilities to help make a miracle.

Friday, March 21, 2014

World Down Syndrome Day 2014

Today is World Down Syndrome Day. The significance is 3:21, for 3 copies of the 21st chromosome.  I'm supposed to ask you to wear blue and yellow or crazy socks to "bring awareness" to my girl's world...

I'm not going to ask you to. Instead, I'm going to ask you to do three things for me:
1) Be extra patient with someone
2) Smile at someone acting "off" and not like you
3) Record deeply in your core, no matter what someone's neurological structure or chromosomal binding we all want the same thing: freedom to be ourselves and to be respected as a human being.

Usually, my days are wildly different from yours.  My child deals with demons that don't even operate in the shadows of normalcy. Today, I am going to stick a toe in the campaign that usually annoys me, because it's partly true.  "More Alike Than Different".

The reason that it annoys me, is that it encourages the usual oppression of trying to make everyone the same.  We aren't.  And that's a good thing.  We all bring different memories, skill sets, expertise, perspectives, and strengths to everything in life.  This is not bad.  This makes us interrelate and build relationships and societies.

BUT for today, I want to remind you that whether we are good at writing or math or speaking in public or serving those who cannot do for themselves, we all have interests and needs that are similar.  We want to be valued for our unique skills.  We want to be loved because of and despite our flaws.  We want to have friends and we want to live our lives with impact and gusto.  And people with Down Syndrome are no different.

Elise is an odd duck, but you share some of her oddities:

1) Elise loves chips.  She prefers it for dessert, 8 times out of 10.
2) Elise adores hockey.  She disdains figure skating.
3) Elise loves a good action adventure movie.
4) Elise thinks Ironman hung the moon.
5) She loves parties.
6) She loves hunkering down at home for days to get her "strength for life" back.
7) She loves to rewatch her favorite movies to soothe frazzled nerves.
8) Pizza is the world's best invention. 
9) Second to the TV
10) She is a chicken piranha.  She can clean it to the bone in seconds, making it sparkle, and possibly suck the marrow out.
11) She refuses to wear shoes that hurt.
12) She LOVES to observe and admire shoes and shop for shoes.
13) She loves computers.
14) She loves to swim.
15) The beach fills her soul with pure peace and joy.
16)  Elise has a memory like a steel trap.
17)  Elise's mental state is closely related to the weather outside.
18) Elise loves foreign foods.  Mexican, Japanese, Chinese, Indian...she likes the interest of spices.
19) She loves to create things.
20) She loves books.
21) She has friends and treasures them.