More about Sandley

When I came home from Haiti last June, one of the first things I did was blog about Sandley. That blog post had more hits than any other one I have ever written. That is my basis for guessing that some of y’all might like to learn more about this extraordinary young man.

Portrait of Sandley

Sandley at the mission, June 2012. Photo by John Rambo.

All I had to write about at that time was what I had seen and what I had been told. As of today, Heather has taken the time to pour her heart into Sandley’s story – how she found him, how he found Justin, how God brought them all to the right place for them. This is an amazing read, please take a moment with it.

I have also heard, since the original post, that Sandley is more successfully absorbing nutrients from his food now that he is being fed tiny quantities on a more frequent basis. I will update you all on his story as I learn more. John is going back to Haiti for an extended trip this spring, as well.

Sandley with missionary intern Justin Clark. Photo by John Rambo.

The Miriam Center is one of the very, very few places in Haiti that is equipped to take care of special needs children. They operate on a shoestring budget, but the 47 young people that they care for are loved, played with, educated, and have treatment plans developed by a special-needs experienced OT. There is a chronic shortage of diapers, food, and medical equipment – there is no shortage of love. To learn how you can help, visit  http://www.kimmyshouse.com/ .

Kenderson

This is Kenderson.

Kenderson

Kenderson.  You can click on this picture to go to his sponsorship page.
File photo from http://www.NWHCM.org

I could try to describe what Kenderson’s life was like before he came to the Miriam Center, but that would be redundant. Heather Owen has already poured her passionate and compassionate writing into the state of this young man’s early life, so if you would indulge me by taking a look at this:

http://janeilavekmadamli.wordpress.com/2009/03/18/the-inth-degree-of-unfairness/

I have been privileged to see Kenderson on my last few trips to the mission campus. He has grown tall and a little pudgy, and no longer appears malnourished at all. But that first year of severe malnutrition will be with him for life. He suffers from serious developmental delays, an autism spectrum disorder,  and he may be deaf. Still, though, given his frightening beginning, he has turned out rather cute, eh?

Kenderson, Miriam Center

Kenderson Jean-Batise (photo by John Rambo)

I met Kenderson for the first time on my 2010 trip with Little J and Ber. That was the same trip where we met Pastor Curtis and his youth group – they “adopted” us onto their team for some ministry events, and I am still friends with many of them. Pastor Curtis spent a lot of time with Kenderson, and nicknamed him “Big Poppa.” He was a round little butterball of a three-year-old back then, and just beginning to connect with/acknowledge the people around him. He spent a lot of time on Curtis’ lap staring at the crazy blans like he was trying to figure out what planet we were from.

So as of this last trip, Kenderson is fed, clothed, has access to an occupational therapist in the summer (she’s trying to go full time starting next year – yay!), and is in pre-school.

The Miriam Center is one of the very, very few places in Haiti that is equipped to take care of special needs children. They operate on a shoestring budget, but the 47 young people that they care for are loved, fed, educated, and have treatment plans developed by a special-needs experienced OT. There is a chronic shortage of diapers, food, and medical equipment – there is no shortage of love. To learn how you can help, visit http://www.kimmyshouse.com/ .

Meet my friend Sandley.

Sandley is 20 months old. Yep, that is not a typo – he will be two years old in September of 2012. I didn’t ask how much he weighed, but from the times I held him I would guess less than 15 lbs – smaller than an average 3 month old.

Chandra helping Sandley take formula through a syringe

It is an unusual feeding position, but it is all he has to work with. Photo by John Rambo, 2012, at NWHCM

Sandley appears (to me – not a medical professional) as mentally alert and responsive as any average infant in the U.S. He is most likely to smile when making eye contact, and he discerns the voices of his “special” people that he is close to – particularly his blan papa, an NWHCM missionary named Justin. His eyes are huge and wise, his face is expressive. He  knows when he is being held by someone who loves him.

The tiny muscles in his arms, shoulders, and back are so well developed that many of my Marine gym-rat friends would be envious. He holds his muscles under tension at all times, even when sleeping. It seems a little like living inside a perpetual charley-horse.

When Sandley has one of his many seizures, he cannot even cry. His body curls up even further – sometimes his feet almost touch the back of his head, and his head turns to look over his left shoulder. In the strongest of his seizures, his arms and hands tremble as yours or mine would if we clenched them too tightly. As he begins to relax, he is able to cry.

Sandley’s malnutrition is advanced – he has symptoms of kwashiorkor, a protein deficiency that causes his hair to grow in thin, fine, and red instead of black. He is fed a very mild formula, dripped into his mouth through a syringe, but his stomach is so sensitive that even this causes diarrhea and he does not absorb much nutrition as the formula passes through him. The co-directors of the Miriam Center, the OT, and the doctor are discussing options for helping his little body take in nutrients more efficiently – it may be possible to place him on a continuous-drip feeding tube for a time until he gains a little weight and his organs function a little more efficiently. He needs to be just a few pounds heavier before he has a chance of being able to tolerate the anti-seizure medications that could begin to ease his pain.

 

The Miriam Center is one of the very, very few places in Haiti that is equipped to take care of special needs children. They operate on a shoestring budget, but the 47 young people that they care for are loved, cared for, educated, and have treatment plans developed by a special-needs experienced OT. There is a chronic shortage of diapers, food, and medical equipment – there is no shortage of love. To learn how you can help, visit http://www.kimmyshouse.com/ .

No, seriously. I really, really, like breathing.

So – two trips to the ER. Every test an ER can do. There is nothing at all wrong with me. I’m in*perfect* health. (Okay, that part is good, and I am grateful.) Except for the part where it really hurts to breathe.  I have been aware of and pretty well in control of my breath my whole life. Literally. My mom is a yoga teacher. She taught me how to take slow full complete breaths… probably before she taught me to tie my shoes. Five years of vocal music lessons – I can’t sing a note, but you had better believe I can breathe from the diaphragm.

But now all of a sudden, I have no control over my breath. And I’m not gonna lie, it is freaking me out a little.

A week and a half ago – Saturday, the 19th. I took a Sabbath. No kidding.  I had been busy every weekend for months – photo shoots with Bo, CMA events, weddings,  work days, baby showers, travel to VA for school – always something. And Sundays are a day of worship for me, but they aren’t really a “Sabbath” because of the amount of work that we do to set up and tear down our church. So Saturday I told Bo that I was not doing anything. I literally laid on the couch, surfed the internet, and scratched my dogs all day long.

Apparently that much rest is bad for me.

At one point mid-afternoon I got up to make a sandwich. Somewhere around spreading the almond butter, I noticed that I was a little short of breath. Weird. I’m in pretty good shape, walking to the kitchen doesn’t usually wind me. The rest of part one of my saga is here.

So, by the end of Part 1 I had come to the conclusion that it was allergies, dog hair, dust, maybe mildew from the ducts. Yeah, um … no. That wasn’t it.

We went over every square inch of floor, with the Dyson, four times. Dusted everything that couldn’t run away from us with very good ostrich-feather and microfiber dusters that hold everything, not the kind that just kick the dust up into the air. Brushed everything that  could run away from us. Changed the vent filters, with special attention to installing the super-mega-ultra-allergenic-millionth-of-a-micron gold standard filters. I felt better, some. So, that was all probably a pretty good idea. (It’s definitely all stuff I should do a lot more often, with or without the silly breathing thing.)

But then we went over to our friends’ house for Thanksgiving dinner. My friend is a neat-freak. I’ve never seen dust in her home. And she only had one small, not particularly shed-happy dog (a miniature dachshund.) And I was still periodically noticing, especially when I was standing up or walking, that I was breathing fast and shallow at the very top of my lungs.  And the instinctive response when you notice that you aren’t breathing well is to try to breathe deeper. Which now really seriously hurts. So that’s scary. And when you are scared you breathe faster, and… it all gets in a handbasket and rolls on down from there, unless I get really conscious of the situation really fast and make a very specific, very focused effort to get it under control. Which I can, yay! But only by breathing really unnaturally slowly, from the abdomen only, holding my chest muscles completely still.

And then came Saturday. Beautiful day. Woke up feeling pretty good. (sidebar – I can breathe just fine when I’m lying down. Mostly okay when I’m sitting. It gets bad when I stand, and really bad when I walk more than a block.) Got on the motorcycle (backseating on Steve, Krea is still… becoming beautiful) and rode to CMA bible study down in Morehead City. Spent a nice two hours with great friends there, and then several of us planned to ride to New Bern to the Harley dealership to help out with a children’s home fundraiser ride that they were doing.

If you aren’t familiar with my neck of the woods, the ride from Morehead City to New Bern is maybe 40 miles, mostly open state highway, passing through a couple small towns but  mostly open road. Not much traffic, not much exhaust, certainly no dog hair or mildew, very little dust. And I could not get my breathing under control. All the fresh clean air anyone could want, and I’m hyperventilating and feeling like I have my head in a plastic bag. Seriously?

So we went to the event, I sat down and kept trying. Unfortunately the only bench available to sit on was right next to the ashtray. So I was breathing secondhand smoke and trying to get my breathing under control. It didn’t help that I was pretty upset, because I really wanted to be at this particular event, held in honor of a wonderful dear man who recently passed away. Bad conditions for breath control.

So, I admitted defeat and told Bo that I needed to go back to the ER.

I won’t go into detail. Nobody wants that. Short version (no, Chan, too late for that) after two chest X-rays, a contrast C-T scan, heart monitor, Pulse Ox, extensive conversation with the respiratory therapist (who is also my Thanksgiving hostess friend), and even more blood tests …. I am really. Really. Healthy. Except it hurts to breathe.

From here – I have a consult with a cardiologist, then back to my primary doc. Then, maybe (I really really hope not) a pulmonologist, an allergist, an endocrinologist… apparently your thyroid has a lot to do with how you breathe. Who knew?

And after all of that, it is probably an odd presentation of a panic or anxiety attack. By odd, I mean – my stress level is lower now than it has ever been in my adult life – and the worst of these attacks happened when I was totally chilled out or having fun. And I’ve never had panic or anxiety attacks before, even when I was under serious stress. But still – right now that is what seems likely.

I think I have a new ninja talent. I can make medical professionals scratch their heads and shrug.

I like breathing.

Yeah, so – I spent Tuesday night in the E.R.  No rumors of my demise, please – I’m fine. I just couldn’t breathe very well.

It was scary. I’m not gonna lie.  Saturday I started having a little trouble breathing. Nothing dramatic, just … it felt like I had run a mile or so, when I hadn’t. Sunday it got a little worse. Stop thinking about yelling at me. I know, I know, I should have gone to the E.R. immediately. I’m a dummyhead. I know.

By Monday it was pretty weird. I was having random attacks of feeling like I could NOT get enough air into my lungs, no matter what. And when I tried, it kind of hurt. Like I was fighting to expand my lungs, and an evil invisible boa constrictor was fighting to keep them contracted. Okay, you are right, I definitely should have gone to the E.R. at this point. Dummyhead. Got it. Movin’ on.

I procrastinated the whole hospital panic thing because I had a regular doctor’s appointment scheduled for Tuesday afternoon anyways. Still dumb, but at least I was not entirely eschewing medical attention. Dr. G checked me over, did an EKG (very good), checked the oxygen saturation in my blood (also very good), and told me that it was “probably” no big deal at all, but just to be 100% super-duper-on-the-safe-side sure, he:

a) wrote me a consultation to a cardiologist for a stress test
b) ordered a ton of blood tests and a chest x-ray
and
c) strongly strongly strongly recommended that I go to the E.R. so that they could definitively rule out a heart attack.

In the name of honesty, I will tell you, I walked out of his office thinking “yeah, right, heart attack. I’m 45 years old and in the best health of my life, I am NOT having a heart attack and I am NOT going to go sit in an E.R. for hours and hours for no reason!”

And then my common sense caught up with me. Drat that sense! I don’t use it very often – perhaps because sometimes it is decidedly inconvenient. I remember my grandma’s first heart attack. It was right before I joined the Navy. The only symptom she had was shortness of breath. My grandpa (purveyor of a great deal of common sense, except where his own health was concerned … hmm…) called 911. It was a very good call.

Well, I spent my 20’s and 30’s completely ignoring good advice from my doctors. In my own defense, the socialized medical care that I was receiving at that point (Navy hospital – they try, but they are really really undertrained and overbooked) was often worth ignoring. But still, I’ve been trying to do better lately. So I went to Onslow hospital’s emergency entrance. They were packed. Call me a stereotyper, but I really didn’t thing that an emergency department would be that crowded at 2 p.m. on a Tuesday. Sigh.

I won’t bore you with all the details. The short version of the next 12 hours of my life is – Bo drove out to be with me. They did three rounds of blood tests and a chest x-ray. Then they made me take prednisone (ack! bleck!) and two breathing treatments. I had a very bad reaction to the breathing treatments. The nurse said “you will feel sort of ‘jittery'” – yeah, apparently for me “jittery” = full-on panic attacks.

By 2 a.m. they were pretty sure that I was not having a heart attack or a blood clot.  So they released me. The official diagnosis was “reactive airway disease” which basically amounts to an allergic reaction. I am still going to follow up with the cardiologist, the chest x-ray, all of that. But chances are, the mass quantities of dog hair and the dust that the dogs bring in, coupled with the fact that my cleaning routines have been off-kilter since my last trip to Lynchburg, are to blame.

In other words, I’m not dying. I just don’t vacuum enough.

All I wanted was a cup of chai…

and it snowballed out of control from there.

My office is smallish – about 10′ x 10′ – but it has rather a lot of largish furniture in it. I have a horse-shoe desk with a big hutch on one side, two bookcases, a wall locker, a big poofy comfy chair, a smaller less poofy chair on wheels, my desk chair of course, and a large coat rack. It’s, y’know, cozy. A nice feature is that I am not capable of walking around my desk without bumping my thigh on a corner of it. So on the days I am too befuddled to remember if I made it to work or not, I can just check my thighs for new bruises.

Another interesting feature of my workspace is that my building was built in WWII. Electrically it has been retrofitted to some extent. At least, it has three-prong outlets. But the wiring I’m not so sure about. And because of the extraordinary furniture:floor space ratio of my office, I had access to two outlets. One was next to my desk (handy). The other was behind my door (less handy). So my computer, monitor, and speakers were plugged into a surge suppressor strip in one plug of the outlet by my desk.  My space heater (our HVAC system is also an antique) was in the other. I have Hot Shot, a teeny-tiny little appliance that heats water for tea, and the only place left to plug it in was into the surge supressor. Well, technically I guess I could put it into the outlet behind the door, but I would have to set the boiling-water appliance on the floor in the path of traffic. That seems unwise.

Most days it works just fine. The Hot Shot takes about 60 seconds to heat water for tea, and then shuts off automatically. It’s a good little gadget. But yesterday was just One Of Those Days. Yesterday I poured the cup of water into the thingy, pushed the button, and every computer and appliance in my office and my clerks’ office next door turned off. 

Thus ensued a 15-minute hunt for a person who knows the circuit breaker panel location. I looked first in the building and grounds division. The building maintenance people were largely missing in action, and the one guy who was present was not familiar with my building. It took one of my own wonderful clerks to rescue me, identifying not only the panel location but the appropriate breaker quickly and efficiently. I do love my team, have I told y’all that before?

Okay, so the Hot Shot has to go in another outlet. Must find another outlet. Not the one behind my desk, me and five strong guys couldn’t move that desk. That leaves the one behind a bookcase. But the bookcase is really heavy. No, wait… bookcase is light – books are heavy. Take the books off, then move the bookcase, plug in the thingy, move it back. Yay!

Well, I started taking books off of shelves, and realized that even though I dust between and around the books semi-frequently (yeah, okay, couple times a year) I don’t really dust behind the books. Ugh.  That’s gross. Find the Swiffer!

Then I took the plant, machete, and picture of Roy off of the top of the bookcase. Just for good measure, best run the Swiff up there too, right? Good in theory, scary in practice. Once again I dust the accessible part from time to time, but the back – behind the stuff – not so much. Once that was done, I went to pull the case out from the wall just a little to plug in the Hot Shot. But there were leaves and rabid dust bunnies and general grossitude behind the bookcase, too. So I pulled it all the way out to the center of the room and went to hunt down the vacuum. Which was not in the cleaning supplies closet. Apparently we store it in the Admin division office now. Go figure.

Vacuumed that whole corner, plugged in the Hot Shot, and found that the cord was too short to go from that outlet to either a bookcase shelf or the windowsill. Now what?

Okay, we’ll just move the bookcase to the corner, bring the wall locker over in front of the outlet, and set the Hot Shot on top of it. Like so, see? (The other black thing on the top of the locker is my trash can. It didn’t stay there, I promise.

CHAOS

CHAOS

 To make a long story … uh … slightly less long, suffice it to say that by the time I left yesterday afternoon, every piece of furniture in my office was cleaned, organized, and in a different location than it started. Except the desk, which I really need a trained elephant to move unless I disassemble it first. I even moved my hutch and computer to another leg of the desk – partly to reduce the glare on my screen, partly to keep everybody and their uncle from looking over my shoulder and commenting on my work every time they poke their head in the door. 

I am sore from my hairline to my toenails from moving furniture alone (drat my independent streak). But I like the new arrangement. On Monday I need to take in a screwdriver so that I can swap the desk drawer and the keyboard tray, and then I will be done, and my office will be hopefully a little roomier and more functional.

And yes – I DID make and drink a nice cup of chai!

What What-the-Dickens said…

Confession – the sidebar labelled “What Chandra is reading” is rarely accurate. I simply don’t remember to update it most of the time. Just now it sort of is – actually I’m done with the Trenga text, almost through the Danticat autobiography – but there are others, too. It’s an odd compulsion but I hate being stuck somewhere with time to kill and nothing to read. So I usually have a  book upstairs, downstairs, in the purse, in the office, and sometimes in the car. Sooooo… my “in the purse” book this week was What the Dickens by Gregory Maguire.

I’m not even sure why I picked this one up. Maguire and I have a spotty history. I was rather intrigued by Mirror, Mirror, and impressed by his writing style and his truly twisted imagination, but it hardly made my favorites list. I’m not even sure it’s on my “will read again” list. The only other attempt I’ve made with him was the much touted Wicked, and I stopped halfway through. Just couldn’t make myself care about the characters. But there I was, in the pathetically understocked book section of a Target. Having found the fedora and patterned tights I came for, I had no business in the book section, but I can rarely resist. I picked up another Maguire on a whim. Hate to write an obviously talented author off without a fair shot and all. And it worked. I am really enjoying this. I started it this morning and am almost done and I’ve just found the bit I was reading it for.

Who would ever believe me if I tell them I’ve talked to a tiger?

“And what task or privilege does that put on me, if I did?”

Fair question, that.

We have these strengths and weaknesses, talents and lacks thereof, each of us. Some of us are fabulous salespeople (not me! worst week of my life I worked for a car dealership for three days. Quelle nightmare!) Some can sing (again with the not me!) Some have great fashion sense or other artistic talents, some know the exact right kind thing to say when someone is hurt. Some people have a talent for making money, or making things from wood or metal. Some people are very organized, some are very random. Every single one of us has a specific and particular (and peculiar) pile of talents, experiences, and predilictions just as unique as fingerprints on snowflakes.

What task or privilege does that put on us?

I have an idea

Took me long enough, huh? But what about a motorcycle ride fundraiser?

John and I rode yesterday in the local Boy Scout ride. It was well organized, beautiful route, huge huge participation. So there I am, sitting on the back seat of Steve the Suzuki, and thinking – hey, if the Boy Scouts can do this… why can’t I?

Just like runners are perfectly able to run for free anytime they have their shoes on, but are willing to pay actual money to run with a thousand other people, it seems that motorcyclists are willing to open up their wallets for the opportunity to move in herds.

Imagine with me for a moment – the “Help Heal Haiti Island Cruise.” A springtime ride around all the beautiful back country (twisty!!!) roads that I have right here in my own backyard – freshly planted farmland, spring flowers, April is really really nice around here – with stops planned on the route titled “Saline Mayette” and “Bonneau” and “La Baie de Moustiques” and with the beginning and end point at “Saint Louis du Nord.”

The stops will have Haitian music or a local live Christian band, samples of Haitian food (I make a mean pikliz, and I’m getting the hang of black beans and rice and pate), and information about the work being done by NWHCM and how people can help. At the Saline Mayette stop, for example:

  • pics of the new orphanage, worship services, school
  • a few of the orphans’ stories
  • pics and “how to sponsor” information on all the orphans currently awaiting sponsors

At the Baie stop, information on:

  • sustainable agriculture initiatives
  • the community development group
  • the high-efficiency charcoal stoves that Curtis has blogged about
  • the fishing boat project
  • microfinance

Tell me if I’m crazy (more than my usual, I mean) or if you think this is workable. Throw me ideas, I’m open!

I need YOUR help!

I have a problem. I am a member of the HelpHealHaiti street team, and I have been challenged to do something. Now, I love me a good challenge. If it’s something I can handle.

 But……. here’s the challenge:

“my challenge to you is plan an event in your area and see it too completion in the next 6 months.  whether this is a benefit concert… and art show… a trip in.. a coffee shop night… a fundraiser… whatever… 

we want you to be the leaders in your area… you to be leading the charge for awareness and involvement.

we’ll give you everything we have (logos, videos, resources, a voice, etc….)”

Ok, that in and of itself is not a problem. Here’s the problem.

If I were to list all of the talents I have, “event planning” would be really really near the bottom of the list. Right above flapping my wings and flying to the moon, a little below playing saxaphone. I am the ultimate clueless one about things like finding venues, figuring out what people are interested in or would come to, publicizing stuff. This is not false modesty, folks – I’m generally pretty realistic about my abilities and my limitations, and this sort of thing is the sort of thing that I legitimately suck at.

On the other hand, I do have a gift for being friends with creative interesting people, many of whom are really good at stuff I’m not. That’s where you come in.

What could be done right here in l’il ol’ Carteret County to raise awareness and maybe a couple of bucks for the wonderful but seriously hurting people of the Northwest Peninsula of Haiti? Please please please – toss me ideas, a plan, a swift kick in the general right direction – no, really – ANYTHING! I’m floundering here, somebody toss me a rope!

The plan – Lord willing and the creek don’t rise…

2011 trips to Haiti –

March – I will be joining Josh on his annual spring break trip. The orphanage is the center of gravity for my heart, and Josh is the guy to go with if you want to spend time at the orphanage, so this is appropriate and necessary – I’m pretty sure. Looking forward to meeting Kerly and getting to know the other teens a little better, maybe I can get some more ideas for ways to connect with them and help them in the June trip.

June – RestoreRetreat. Shaun King from A Home in Haiti, and Brent Bramer of Help Heal Haiti, are putting together a combination mission trip/youth retreat for future church leaders, to help them focus and clarify their roles in furthering the Kingdom. I am putting together a team of young adults for this trip. Part of the trip will be spent at the orphanage, working with the teens. So far I am looking at:

– Translating a Spiritual Gifts test into Creole and working through that with them

– Working through the first three chapters of Genesis with the Firm Foundations curriculum, from New Tribes Mission

– Talking to them about what careers and vocations might interest them, what university or vocational training they will need to get there, and what they can do now to start preparing

I’m open to other ideas – I don’t want to bog down the few days we have together with too much stuff, because I want to leave a fair amount of time for “just hanging out” and encourage the Haitian youth and American youth to form friendships.