Our New Normal [s] » Our little family's realization, that there is no normal

Hiatus: Life Interrupted – Gabe’s Thoughts

Hiatus

Back in July when this idea was born it was supposed to start, develop and end, with a nice bow at the end…. or, as they call it in the film world, a denouement, a dramatic unraveling of the plot. You know, the final sequences when the bad guy is caught, boy gets the girl, girls marries boy, the evil-rich guy goes to jail, we kill the Terminator, Bella marries Edward, Katniss chooses (whoever), the Ring is finally destroyed, you know what I’m saying…  Juvenile Dermato-Myositis goes into remission- wouldn’t that would be nice!

But it was not so. And that term “remission” still continues to be the elusive sasquatch that is only sighted rarely, briefly, and at a distance. And just when you get close enough to hear it breathing, and even smell it: it disappears again.

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We know it never is as simple as that, at least for some of us.

Now, we have some friends (and, yes I have to admit, I get a little jealous, sometimes) for whom life never deviates from their plans (from my perspective, you can never know what’s going on inside unless someone allows you).

Do you have some of those friends?

They have plans for buying a house, remodeling their house, buying cars, traveling, career moves, savings goals, even children. How many to have, when to have them, what gender…

And, seemingly, things go according to plan!

Well, that is NOT OUR EXPERIENCE…

This hiatus, this interruption, was not planned. We had another plan. It was only 40 days: begin, end. BOOM! Help as many people along the way. Do good, feel good, be good!

But life just gets in the way sometimes, doesn’t it? Life interrupts us. Life interrupts our plans… All the time.
Travel, kids, work, cleaning, shopping, cooking, jobs, lawyers, money….
Does that sound familiar? That’s what happened to us, even before this little “hiatus”. Actually, that is where all this began.

Life Interrupted

We too had plans for our children… until our son Rio was born with a “mid-line defect”.

Man! It is impossible to forget the doctor coming to me, in a very hushed but quivering voice, “he got a small cleft in his lip. We need to examine him”. The professional, the one who is supposed to be the expert, who is supposed to reassure us, who is supposed to be in control of the situation, sounded afraid, anxious, like he was out of his depth.

Sounded more like “Toto, we’re not in Kansas anymore” than “Chloe, upload it to my PDA. Damn it!” (reference to Jack Bauer, in the show 24- who was ALWAYS in control!)

From that moment life interrupted and disrupted our plans. There were no celebrations, no cigars or pointy hats. No kazoos or helium balloons.

None of that, “IT’S A BOYYYYYY!”.

My handsome Paolo Rio Chaim was meticulously examined. Nurses bumping into each other like the little metal ball in the pinball machine. The pediatric cranio-facial specialist made an appearance, like Superman flying through the window and they concluded that there was indeed a small cleft in his upper lip AND one in his upper gum. They were not sure if the cleft affect the bone in his upper mandible, but that was not critical so we could leave that for later, EXCEPT… here came life interrupting again… Rio would not open his right eye!

Dang it!

Nurses, after calming themselves, insisted that this was “normal” and it was part of the swelling from going through the birthing process, but Freedom insisted. And insisted. And insisted, again.

So Superman, cape flying in the wind and everything, came back and took a closer look at Rio’s right eye, confirming that it was smaller than the other and appeared malformed.

Micro-ophthalmia was the greek-inspired, compound word.

Now, this “defect” plus the two clefts could be signs of something major, but “don’t worry!” …

Oh, okay, doctor. I won’t. That’s only MY SON in your little Plexiglas crib!

These “Mid-Line Defects” put our baby boy through a battery of tests: MRI, genetic, sensory, blood tests… If you are one of those parents who have seen your newborn with tubes connected to their tiny little veins, my heart is with you!

My knees buckled. I imagine my lips quivered, although I could not see my reflection in the glass walls of the neo-natal unit. My eyes did well up with tears and my heart seemed to hesitate… I had to compose myself before returning to see my exhausted, hormonal, worried wife, so I could “reassure” her that all would be fine.

What the heck did I know! I hoped everything would be ok!

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Rio- then

(read more and see photos here)

But this storm passed. Paolo Rio Chaim is a healthy, vibrant young man. He turned five in September, and we even “corrected” the cleft in his lip, so if you saw him, you would not be able to tell he had a cleft lip.

As a family we adapted to that “new normal” (see link). Freedom has been a champion dealing with the prosthetic eye and the “conformer” before that. Rio has too, but he does not like it sometimes.

But after, three years we had all learn to manage. Even Rio’s sister… She loved her brother and his “little eye”.

Then, on 17 February 2011, we made the short drive to Shands Hospital, at the University of Florida, in Gainesville.

INTERRUPTIOOOOON!!!!

I can tell you the date, because other than the significance of the day, it was my 36th birthday…

I remember a lot leading up to it….

The red rashes that would appear on Vivia’s face. The weird bumps in her hands, elbows, knees and toes. The visits to one the pediatrician, then to one dermatologist, then another.

I remember the dermatologist that finally presented JDM as a possibility. I remember the first biopsy, then the second.

I remember the searches Freedom conducted online. (Note to self: DO NOT DO THAT!!!! There is some really scary stuff out there.)

I remember the drive to Gainesville. Are we going to spend the night? Are we going to have to leave her there? Can you stay with her? Who will watch Rio?

The two-hour drive was filled with dread and foreboding, although, “we are people of faith! Everything will be fine!” I really tried to stay positive, but when it becomes effortful at some point it becomes tiring.

Dr. Elder, confirmed what we dreaded. Our Vivia Victoria was diagnosed with Juvenile Dermato-Myositis.

INTERRUPTIOOOOON!!!!

————
When Rio was born I ran to buy “The Adversity Advantage” by Erik Wiehenmayer. I had read about the author and knew he happened to be blind and, since Rio was blind in one eye, well… it made sense in my head.

Wiehenmeyer has summited the tallest peaks in EVERY continent, except Antarctica, even Everest. He is blind in both eyes.

And among many insightful things, I gathered that ‘adversity’ is like a bone fracture. The place where a bone breaks, once mended, is stronger, thicker that the rest. We humans “overcompensate” for our weaknesses and lacks, and end up developing “super” qualities or super-strengths. Maybe like Beethoven, who composed while deaf. Maybe like Stephen Hawken, who has one of the more prolific brains in history, while immobilized by his severe disabilities. Like the quiet kids who become  phenomenal writers or inventors or financiers.

So I wonder about our new normals. Our interruptions. Our hiatuses….

I wonder, and I do hope, that this situation is (or will be) God’s tool to make our children stronger, better. I have to hope that this “fracture” will mend and become the unbreakable, unshakable fulcrum for a life of successes and victories and triumphs.

I have to wonder, and I do hope that this becomes their source of greatest super-strength.

RECURRENCE
In August of 2013, (Coincidentally in the middle of our FAST)  Vivia started complaining of being tired and achy, with no flu-like symptoms.

Of course, for a parent who has gone (is going) through JDM with their child this is like hearing that the IRS wants to have coffee with you… Abso-FREAKIN’-lutely the last thing you want to hear.

August is the fourth or so month of the summer, here in SUNNY “Flare”ida. Children are out of school with a higher proclivity to spend more time outdoors, in the SUN. It is the end of summer break, so we all are out of games and movies and books and things to do inside the house… Usually a disquieting time for this house, to start.

So when Viv’s complaints began we started checking, and, yes, the bumps had returned, in significant numbers.

Knuckles, elbows, knees… Is her face a little too red and blotchy?

The findings and the sinking feeling with it upended a season of recovery, of hoping we were going to be declared in “remission” very soon. Anxiety returned. Optimism was in there somewhere, but like the shaker of coriander, it was at the very back of the cabinet with the label facing backwards, so I had to move things and look thrice to find it.

I went on three international trips in five weeks. School was starting. Both our older children were going to new schools. The baby was switching to solids. And I got a veiled threat to be sued, by someone with whom I had done business.

INTERRUPTIOOOOON!!!!

So, FastBreak40.com went on hiatus.

I had been fasting from listening radio, so the drives to and from work were long periods of “forced” reflection and prayer. That’s not a bad thing. This seemed like a long “sacrifice” at the beginning. Forty days without radio! Geez! Trust me, for me, it was a big deal.

But since we had not finished this project and being the stickler that I am, I continued the “fast”. And 40 days turned 70 or 80, I don’t know. I never counted.

But on one of those forced reflection periods, I remembered a story and I have told you ALL of this so far, to tell you THIS story.

It is the story of three Jewish boys living in exile.

Into the fire

Hananiah, Misha’el, Azariah lived under Babylonian rule, serving King Nebuchadnezzar and under the protection and tutelage of another Hebrew, Daniel.

You may have heard their Chaldean names: Shadrach, Meshach and Abednego.
The capricious king decides to build a statue, a huge golden idol (maybe it was depiction of himself), and everyone in the kingdom is supposed to assemble in front of it and bow down to it, under penalty of death if you refuse.

This story is found in the ancient book of Daniel (Old Testament), Third chapter. But if we read chapter two we see that King Nebuchadnezzar pulled this kind of nonsense before… In chapter two he decrees that everyone has to eat certain foods, under penalty of death if you refuse. In that instance, Daniel refuses, is thrown to the lions to be devoured but survives unscathed.

So here we are in chapter three, in the midst of a recurrence of the King’s capriciousness. Now his tantrum is for everyone to kiss the feet of the statue or some such gobbledygook.

The three youths, who some believe may have been barely teenagers at the time; refuse to participate in the collective brownnosing. After all, the people are only worshiping the King by indulging him, not the statue.

The King, rule maker, judge and executioners sentences them to death by fire. And his tantrum is so raging that he orders the furnace to be heated up seven times hotter than what is normal and necessary. I guess he wants to prove a point or something.

Now, the boys respond with a resolve that I only wish I could have when life throws interruptions my way:

 “O Nebuchadnezzar, we have no need to answer you in this matter. If that is the case, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, O king. But if not, let it be known to you, O king, that we do not serve your gods, nor will we worship the gold image which you have set up.” Daniel 3:16-18
Dang!

Even if we die, we will die standing!

We read that the furnace got so hot that the soldiers throwing these guys into the fire died from the heat around the furnace.

And then we read that, in typical ancient morbidity, the King watches to see his victims burn alive. Who knows, maybe he even wanted to get a whiff of the burning flesh.

But it was not so.

The King watches as four figures, not three, walk around in the furnace. The fourth might have been some kind of angel…

Naturally, he freaks out a little bit and orders the fire extinguished and the boys rescued. When they come out, the book says that “the hair of their head was not singed nor were their garments affected”. It says that they didn’t even smelled smoky.

I wonder if the fire only burned the binds that held them and that is how they were walking around. The very element that was supposed to kill them was what broke their bonds!

Remember this: (Robert Madu’s teaching in Sydney)

I love this, “what you thought would destroy you is what will propel you….”
The King does a complete 180˚ and “converts” to the Hebrew God. Then, the chapter closes thus:

“Then the king promoted Shadrach, Meshach, and Abed-Nego in the province of Babylon.” Daniel 3:30

That is my prayer for my children, that this furnace, this fire, that seems destructive to me; this situation that, from my point of view, seems to be attacking them; this “interruption” to their childhood; will set them up, will strengthen them, will propel them, will equip them, will help them become people of exemplary character, unbreakable convictions and unshakable destiny.

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Rio- now

 

January 13, 2014 - 11:41 pm

Julia Goguen - My God, My God, My Savior! These parents are amazing and inspirational. I see that even in them the fire has purified and destroyed the bondages. I see no ‘lacks” or “less-thans” on my grandchildren. I see an amazing uniqueness. I was making Christmas ornaments and cards with them a few weeks ago. Vivia happened to pause the video right when one of the characters, a green crayon was squinting his right eye. Rio became so excited. He squeals, “Bella, Bella, look green crayon HAS A SMALL EYE!” This was a bitter sweet blessing number one. Then Vivia says, “Isn’t he so precious? I LOVE HIM AND HIS SMALL EYE.” number two precious blessing. I am only just learning first hand what people who love special children have been telling me for years. There is no lack, there is only a multiplication of blessings.

January 17, 2014 - 7:02 pm

Jeff Adams - Amazing I had no idea! God is faithful!

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