The Word and the Witch

There was a word that was sometimes used within the kingdom, that was feared and hated by the King and Queen. People used it to describe things they hated, things they found ridiculous or lacking in common sense. It could be used to describe someone who was acting stupidly. And the King and Queen knew that someday, somewhere, someone would use it to hurt the Lightning Kid.

Luckily, there were movements afoot, where people pledged not to use the word, and the King and Queen were not confronted with its use as often as they feared. Still, one day, a witch called the leader of a great land the dreaded word, and many were up in arms over the statement.

The King knew the witch to be what she was, meaning it was in her nature to say things that were cruel, mean, evil or false. She would continue to say such things as she always had, and never apologize, so there was no sense making such demands. The King envied the Queen, who had never heard of this creature; but he felt drawing more attention to the witch would only give her more power.

Still the furore continued, and the King began to change his mind. While he remained steadfast in his belief that the witch could not be redeemed, he figured that by calling out her transgression, others who did not wish to be identified with the witch's evil ways would realize their use of the dreaded word was inappropriate. So he made her use of the word known, and he made it known that the word offended the royal family, and it was an offence against the young prince.

Knowing how awful the witch was, people took the pledge in droves...

The Lightning Kid and the Boobless Wonder

One day the Lightning Kid woke up from a nap, and he was hungry. He cried, and found a shape moving toward him. The shape looked, sounded, and smelled like his father the King, but he was too desperate for milk to be bothered to find out.

He cried some more as the shape tried to pull him out of his sleep-sack. Since this did not involve nipples or milk, the Lightning Kid twisted, turned and fought with all the electrical energy within his little body.

The shape tried to stand him up on his change table. This gave the little prince the chance to search for precious boobs by pulling down the neckline of the shirt he found. There were no boobs, but there were a few hairs that only his little fingers would be able to grab. Once he had almost a fistful, he was able to give them a good pull. The shape yelped but still did not give him the milk he wanted.

The Lightning Kid had noticed that the shape's chest was not shaped like boobs, but he must have figured that nipples might still be under that shirt, so with a marksman's precision, he reached out, grabbed at the shirt at precisely the right spot, then squeezed with his freakish, lightning powered strength. The shape screamed, and the next thing the Lightning Kid knew, he was being handed over to the Queen, where he could feed to his heart's content.

It would not be the last time the young prince would face the Boobless Wonder, but his brave tactics always resulted in victory and milk.
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Standing On the Shoulders of Giants

While there are many Down Syndrome Superstars nowadays, and a great community of DS Advocates and parents on social media and the blogosphere, it's important to remember those who have blazed the trail for us.  Before blogs, before the internet even, there were families striving to give their children, brothers and sisters the best opportunities and the best lives possible, in a world that probably seemed like it was bent on denying them those same chances.

The Lightning Kid turned one year old, and the King and Queen could hardly believe that much time had passed, nor how much different their world seemed.  The Princes' birthdays were cause for wild, festive celebration, and much was done to mark the occasion.   For the King and Queen, though, it was also a time to reflect.

The King took more walks alone, and though he had chastised himself for doing it too much all too recently, he found himself trying to stare into the future.  He climbed to the top of a hill and stared ahead at the horizon.  As usual, much was cloudy, and unknowable.  Still, he found that if he really concentrated, he could pierce the fog with his vision, and see quite far indeed.

The world of the Lightning Kid's future was one where he could ride as a knight, as any other prince might expect to.  He could serve his kingdom, as any other prince might expect to.  He could marry a princess, as any other prince might expect to.  The King marveled, and asked himself not only how such a future might be possible, but how he could even bring it into focus, when such things would have been unimaginable in his youth.  He turned his eyes from the horizon to his feet, and that was when he noticed that he was not standing on a hill, but on the shoulders of a Giant.  He looked around some more, and the Giant was one of many, all gathered in a cluster, all facing the same direction.

The King turned to the Giants and said: "Thank-you for what you have done; for the strides you have taken, and the ground you have broken for families like mine.  It couldn't have been easy, nor will our path be an easy one, but I hope that we will one day grow to your stature, and that those that follow us might one day see further still by standing on our shoulders too."

Shark Boy`s Day in the Sun (and Shadow)

As the autumn deepened, the Prince’s birthdays approached.  When Shark Boy turned three years of age, the King and Queen had time to reflect.  They thought warmly of the ways their lives had changed, and the ways they themselves had been transformed as people by becoming parents.

“I am so proud of our rambunctious, fun-loving, goofy, sporty, adventurous, energetic, generous, loving and charismatic little guy! “ announced the Queen.  He possessed all these qualities and more, thought the King.  He was also clearly bright, strong in body and will and would have made any father proud.  What the King had said made him the proudest, however, was his good heart.  Shark Boy knew how to show kindness to many, but none more so than the Lightning Kid, who he regularly smothered with hugs and affection.

Shark Boy’s birthday came and was a grand day indeed.  The sun seemed to shine upon him, and he took full advantage; in that light, the King felt like he could see into his future.  A child like the Lightning Kid would be blessed to have a brother like Shark Boy, and the King and Queen could be proud of how they were raising him so far.  Still, as the King thought ahead (as he was wont to do), he knew the Lightning Kid would need the care of an older brother when he and the Queen would be long gone.  And then he felt guilty for saddling Shark Boy with that responsibility.  He worried further, since he knew it would likely be impossible for the Lightning Kid to have children of his own, it would fall to Shark Boy have heirs to the throne and transform the King and Queen into grandparents.

It was too far away to worry about, and the King had learned not to have expectations, as nothing in life was written or promised, and still he worried about putting undue pressure on Shark Boy.  Yet as he thought about the joy that parenthood had brought the Queen and him, he could hope that he would be able to show that joy over the course of Shark Boy`s life, and he knew that whatever choices he would make for his own life, he would understand that having family, caring for and loving family was both a gift and a privilege.   The King realized that Shark Boy`s  good heart would always be his greatest strength and that he would always cherish family.

The King's Well Runs Dry

Every morning the King would refresh himself by drinking from a well within the castle courtyard.  He would take a good long drink, and start his day being King, and being a father.  After a while he noticed he was pulling less and less out with each morning's bucketful.

Then one day the well ran dry.  There was nothing left to pull up and the King went thirsty.  He went through with his fatherly duties, but couldn’t remember why.  He felt like he had sung every lullaby, played every game, cajoled Shark Boy into behaving, cleaned food off the Lightning Kid’s face a thousand times or more, and his only reward would be yelling, crying or even screaming.  He hadn’t always felt like he knew what he was doing as a father, but suddenly the work seemed not just challenging and demanding but rather like pointless drudgery.  Even when exhausted, he’d been able to find some spark within himself to do whatever was needed by his family at any given moment, at least, until that day.

He tried talking to the Queen.  She was sympathetic, and equally tired.  She spoke of the times that she had lost patience with the experience of parenthood.  The King felt stupid; every parent experienced fatigue and all found the behaviour of their children taxing at times.  He read his own words back to himself in his mind, and surmised that they sounded like pointless whining.  He worried that if he tried to discuss it further with the Queen, if he tried to elaborate how empty he felt, she would worry about him, and fear that she’d be caring for the children without his full support.

Despairing, he left the castle for a walk in the woods.  Once he was in deep enough and he thought no-one would hear him, he cried out:

“Can one simply lose the magic that is within?  The magic that makes us do what is necessary as parents... can it simply disappear?!?!”

“Yes...” came the answer from the tree canopy above.  He looked up and saw a red-haired pixie.  “And it doesn’t last.  Honest.  Your heart won’t let it.”  The King thanked the pixie, and returned to the castle, determined to at least try and get one good night’s rest.  When he woke up the next morning, he was able to pull a quarter-bucket’s worth from the well.  The day was still difficult, but he found himself smiling more at the antics of the children, and there were more hugs and less crying and screaming.  He also managed to take enough time for himself to get some exercise; more than the usual amount in fact.  The day after, the bucket came back full, and the King drank deeply, refreshing his soul.  He’d known that he’d have to be patient with his children, but know he knew that he had to be patient with himself.

The Lightning Kid and the New Healers

The Lightning Kid had gone from being able to sit when placed to being able to raise himself into sitting from his belly.  He’d become so proficient in the latter that the King had even seen him prop himself into a sit while technically asleep - much to the King’s over-fatigued, under-slept chagrin.  

Still the young prince’s progress was pleasing to everyone and was very much in keeping with his previous track record as a ‘superstar’.   Yet his 10 month birthday came, and he was still unable to crawl.  While this was by no means a great delay for any child, even a typical one, the King and Queen could not help but worry a little.

He had been developing fantastically, and had a personality that was dynamic, active and inquisitive.  The Lightning coursing through his system was not only powering his hair, but all his movements - he had a wild dance where he’d swing his head from side to side to greet or entertain people he liked, to his ability shoot out a hand like a snake and snatch things that seemed out of reach, to his freakish strength when grabbing things or trying to squirm out arms that were trying to rock him to sleep.  These were remarkable even in a land of Shark Boys, Two-Headed Monsters and Magical Bubbles.

Crawling was something he would need, but in his case, the sooner the better.  The King and Queen hoped to curtail any of the delays that were anticipated with his condition; whether this was an actual delay or not.  They had the means and resources to pursue the assistance of an extra healer, and resolved to tread lightly and carefully - a subtle touch is sometimes the most powerful.

They took the Lightning Kid to a House of Butterflies and met with a healer.  The healer couldn’t help but be impressed with the prince’s attitude and energy, which surprised the King and Queen since they’d had the bad luck of picking a day where he hadn’t napped well and was bound to be tired.  The healer mentioned that her own children had hair like his and went about assessing him.  The Lightning Kid went on to demonstrate all of his collected skills, and the King and Queen were pleased to find out that the healer agreed to a schedule of a half-hour every two weeks.  They’d heard that more work was common in other lands, but they found this schedule was more in keeping with their beliefs to integrate new exercises into their existing lifestyle, rather than burden a baby with chores and drills.  They were given tips to get the Lightning Kid to use his legs more, including not only to propel himself forward, but also to bring himself into a supported stand.

A week later the prince would be assessed for signs that his speech was progressing well by a different healer. They noted how he was aware of his own name, and who his parents were, and how he expected action from those in the room. They catalogued his sound "Baba", "Eh!" "Bada" and of course blown raspberries. The healers suggested playing with sounds in front of a large mirror which they lent the King and Queen (it was made of a material that the two princes would be less likely to break...). The next morning the King tried it out and the Lightning Kid had fun doing his head swinging dance and generally having fun with his own reflection. Within days his sounds had expanded to "Uh!" and "Mada". The King and Queen knew it would be onward and upward with the new exercises for the next little while.

The Lightning Kid and the Chariot Race

The King and Queen had long been enthusiasts for running and racing.  Of late, it had been harder to participate in these sorts of things, but their enthusiasm remained.   If they got to race at all, one would remain with the children, while the other would race.  Still they were overjoyed to be invited to a race being organized by a dear friend to raise money for a good cause.  The race would be small enough that both could participate, and the King and Queen did a practice run with Shark Boy riding a small steed, and the Lightning Kid in a special Chariot that the King or Queen could push.  Their practice run was short, and Shark Boy needed to join his brother in the Chariot for the return trip.  Furthermore, the Lightning Kid got a little sick of it and cried most of the way home.  Still the King and Queen considered that they had proven the concept, and looked forward to joining their friends' race, and helping their cause.

The Ride of the Lightning Kid

Come the day of the race, the King and Queen were lucky to have the Queen's mother there to help with minding Shark Boy... there was a good chance he would lose the plot and not be willing to keep doing laps of the race course, and that's exactly how things turned out, though he did a fair distance on his steed.  That left the royal parents to concentrate on the Lightning Kid himself, who seemed to be teething, and thus a little fussy.  The race was about to start, and it was around the time he usually would have a nap, so he was very prone to crying and fussing.  The King and Queen discovered that the Lightning Kid's soother was not handy; the King ended up having to run an extra half-mile or so to go fetch it in time for the race start!

He got back with the soother almost out of breath, and off they went.  Soon enough the Lightning Kid was asleep, and the King and Queen were able to progress through laps of the race course, slowly but surely, with occasional checks on how Shark Boy was making out.  They were three quarters done, when the Lightning Kid woke up again.  Still he didn't complain, and only made a few coos to show his pleasure at the changing scenery.  The King and Queen finished the race, not having completed the longest distance, and certainly not the fastest, but proud of themselves, and of their son who seemed to have the spirit of an athlete indeed.

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