Archive for category: Family (Page 3)

“Pebbles is trying to die”

03 Sep
September 3, 2012

“Pebbles is trying to die.”

Not the easiest news to hear from the vet. He was right, though. After a few weeks of fighting a losing battle with some sort of bacteria, Pebbles – our pet Bearded Dragon, had to be put to sleep to end his suffering last week. We had tried medications and all of the vets’ suggestions with no luck.

The boys dug a hole under one of the trees in our back yard, and after taking turns filling in the dirt over his little box they piled bricks on top to make sure they remembered where he was buried. I suppose it’s good in the long run; the experience prompted a lot of questions and conversations about death, but for the moment we’re all kind of sad over losing him and the big empty tank is a depressing reminder.

We’ll probably be getting another baby Bearded Dragon soon and starting over. They’re great pets and more fun than I would have anticipated. We’ve all been trying to brainstorm new potential names … but can’t seem to come up with anything that tops ‘Pebbles’!

 

Living in a whirlwind

19 Jun
June 19, 2012

Life feels like a whirlwind at the moment.

Over the eight days we will be sending 74 students and adults on mission trips to Maine, Boston and Jamaica. I can’t wait to see what God will teach us this year – videos like the one above from last year hint at the amazing things we see happen in our teams. There is quite possibly a million or more things left to do between now and the departures.

The school year has finished and we are caught in the contradictory feelings of grieving the imminent departure of students we have worked with for so many years and the excitement at beginning the journey again with the incoming sixth graders.

Ramping up for summer events, working on fall events, and reworking our volunteer structure add up to a lot of plates spinning. I also need to start aggressively recruiting for some of the new student ministry teams we hope to form.

Did I mention the student ministry assistant resigned? His presence will be missed! Thankfully I have a part time intern to help carry the load over the summer, but it does make me nervous about the fall – the level of administrative and volunteer training/leading required to pull off our student program isn’t sustainable in the long run without the assistant position filled.

Micah, Caleb and Noah have all been finished with school for a handful of days now, which means we hear the words ‘I”M BORED’ over and over and over and over and over and over … even when they’re clearly NOT bored. Sheesh.

I have a list of writing ideas I’m dying to get to. As soon as I have some free moments …

Doctor’s aren’t magicians?

01 Jun
June 1, 2012

I was just talking with someone the other day about the subtle expectation we tend to have that given enough resources, anything can be fixed, including our health. He mentioned how we always think doctors know everything, but one his friends (a doctor) admitted he was faking it half the time. I laughed and said that’s my own number one rule in first aid emergencies – looking confident, authoritative and in control. The last thing I need is an injured teen panicking, that will only hurt them worse. So I act like I know what I’m doing and hide any fear that I’m feeling (I am first aid certified, so I’m not faking my response).

But it is a strange thing when you realize the people you assume can help might not be able to, when you start to lose some of that confidence and naive trust. Realizing there are some things doctors just can’t do much about is a disconcerting and scary prospect.

When Noah was finally diagnosed with localized scleroderma, it was a relief at the time. We had spent a year and a half trying different doctors, treatments and tests trying to figure out what was going on with the skin on his face with no luck. Having a diagnosis was something we could act on, and of course, being close to experts meant we were golden. Especially when he responded well initially to treatments.

Then the treatments stopped working and started hurting him. So now we’re trying something else, but it really doesn’t seem to be working. It’s a frustrating reality to have sinking in more and more; this disease does not have a cure. Doctors don’t know everything about it. The experts and top brains in the scleroderma field are still experimenting with treatments. The best luck they have had are with medicines designed for other conditions and diseases that just happen to slow down or stop the progression. Unfortunately, it’s a rare disease that takes years and years to run trials on, which puts it low on the priority list for funding research.

It’s hard to be patient. When the best you can hope for is something to halt the scarring and tissue deterioration, without hope of the damage healing, time lost on ineffective drugs just results in accumulating scars. I made the mistake of Googling ‘localized scleroderma’ the other week to try and find a catchy image for a blog post. It was a terrifying and not at all what I had intended to find. It was the first time I had seen graphic images of Noah’s condition in full force.

June is Scleroderma Awareness Month. I would encourage everyone to visit and like the Scleroderma Foundation’s Facebook page to learn more about this disease. You can find my other blog posts on my son Noah and scleroderma here.

Changing it up with Noah

03 May
May 3, 2012

So everything got changed up on our six year old, Noah last week! Sheesh …

You can read some of my previous posts about Noah and his health challenges (Scleroderma and Ptosis) by clicking here.

But back to the point. Basically, we got called into the doctor’s office because Noah’s latest round of blood work came back bad – we were told to stop giving him the medicine and come in for a new plan. For the last year and a half or so Noah has been on one drug; originally orally, but then through weekly injections, to try and stop the spread of the Scleroderma. At first it worked. Then it stopped working. And then it became toxic to his body. For the last several weeks he’s been nauseous and on the verge of throwing up, and then the blood work came back revealing the medicine was at damaging levels in his liver. This was frustrating because he was on less than a third of the dose the doctor eventually wanted to get him to, and with the Scleroderma noticeably spreading and damaging both his skin and the tissue underneath, we’re all very concerned.

So now that the preferred treatment is no longer effective (and I believe it’s the only one they’ve actually completed a successful trial on), we’re on to a new drug. Noah was happy because other than the monthly blood work, this one is oral so no more home injections. Unfortunately, it tastes awful, so it took him a few days to get used to the twice a day dose. He’s also on a steroid for the next six weeks to jump start the drug, so at the moment he’s getting various medicines three times a day (we can’t do them at the same time because of the different food/no food stipulations), which has him thinking about it a lot more than when he was on a once a week injection.

As a parent, the last six months have been disappointing to say the least. It seems like each visit has been bad news in some way. The disease continues to spread. We can’t give him enough medicine. The medicine goes from being helpful to toxic. We’re taking aggressive steps with potentially bad side effects. And all this is just for the hope of halting the spread of the disease. There is no cure. And he won’t heal where it has already done damage – the only prospect there is plastic surgery when he’s an adult. Even the medicines we try aren’t actually designed for Scleroderma – for the most part they are actually intended for organ transplant recipients to help their bodies not reject the new organ. They’ve found by significantly upping the doses in patients like Noah they can slow down or stop the spread of the localized Scleroderma. It’s even strange going to the pharmacy; because these drugs are so rarely used, they always have to special order for us. It’s disconcerting to be recognized at all these places (the pharmacy, the blood work lab, the doctor’s office). We’re there a little too frequently!

All that to say, keep praying for our son. We’re only a week into this new treatment plan and we’re hoping when we return to the doctor in a month that we’ll hear something good.

Noah’s street cred

16 Apr
April 16, 2012

Today was Noah’s monthly trip to the hospital for his blood work. Because the medication he’s on for his localized scleroderma is powerful and has the potential for side effects, his blood has to be monitored. The hope when we began a year and a half ago was that there would be enough margin of safety in the results that he could eventually dial back the frequency to every few months, but unfortunately his results have been consistently borderline (on the safe side of the line, thankfully) that we’ve had to keep the frequency high.

Anyway, we’ve got it down to a routine. This keeps it predictable for him and gives him an air of control, and even somewhat special (he’s the only one of our kids allowed to play with my phone, and only when at the hospital; he gets a milkshake, stickers, etc., and his brothers are jealous – little things that are a big deal for a six year old). So today we walk in to the needle room and an older teen was on one of the couches getting prepped to have blood work done. He saw Noah and said something to the effect, ‘oh man, that little guy is going to be crying.’

Three of the four nurses immediately responded with comments like, ‘Him? No way, he’s the best at this.’ ‘Noah’s a tough guy, he never cries.’ ‘He always does better than everyone.’ I’m not sure, but I thought I saw Noah get a bit of a swagger on his way to his couch.

I was grateful for how they all pumped Noah up.

I was also sad that he’s there so often that in a hospital that treats people from the world over, and in the blood work lab where there is always a massive line of people and I can’t fathom how many they see in just one day, that most of the nurses know him and remember him.

Traveling through Narnia

26 Mar
March 26, 2012

Part of our night time routine (on nights I’m home at bed time) is once the boys are all in bed I read to them. We’ve mostly been working our way through C.S. Lewis’s Chronicles of Narnia, with a detour to Alice in Wonderland the other month. We average a few nights a week, which means it typically takes about a month to work through a novel.

Tonight we finished The Voyage of the Dawn Treader (in the correct ordering of the Narnia books, it’s the third one). So far it has been the most enjoyable to read, mostly because the boys have been so into it. They’re talking about it, gasps of shock at discoveries, completely into it. Definitely a lot of fun. I think part of it was simply that every chapter or two the characters were on to a completely different adventure – definitely a great story telling decision on Lewis’ part.

One of the interesting things in this one was the silence of Aslan. He was invisible most of the book, and even when he did encounter characters, it was usually one at a time and we would ‘hear’ about it after the fact. The boys were pumped every time he was mentioned, and it was cool seeing them making a lot of the connections between our faith in God and the connections Lewis made in his story. Partially it was more blatant in this book, but they’re also being more intentional in looking for it. I like that they are learning to search for meaning in their entertainment – everything has a message, and we should always be aware of the message we are being given in whatever it is we are watching, listening to, or engaging in.

All that to say, I think it’s safe to safe we’re all excited to begin The Silver Chair and discover how Eustace returns to Narnia.

Noah sees the good

19 Mar
March 19, 2012

Noah, our six year old, is a trooper. He gave me a lesson in perspective today. For the last year and a half or so he has had to go to the hospital every month for bloodwork. Since the fall, he has also had to have a weekly injection at home.

So today was his bloodwork day. And it coincided with a shot at home, and he knew he was going from one to the other. On top of that, they’re running some extra tests so they took more blood than normal. I was thinking about how unfair it was for him.

So I was pretty shocked when we were in the car leaving the hospital, on our way home to another shot, and he said, ‘daddy, this is my luckiest day!’ I asked him why it was lucky.

He gave me a list. He was going to get a Shamrock Shake which normally isn’t at McDonalds and it’s his favorite (he gets a milkshake after bloodwork). Not only did he get four stickers from the nurses like always, but he also got a silly band. He got to play a new game on my iPhone (Puss ‘n Boots Fruit Ninja). And the emergency helicopter took off from the hospital while we were waiting on the curb to leave which meant he got to see it fly. ‘It’s a lucky day, daddy.’

I was pretty quiet while I drove to McDonald’s. I was all choked up and my vision was blurry. I had a list of all the injustices he was suffering and he had a list of all the special things he got to do.

Reporting MK abuse

15 Mar
March 15, 2012

I met with the IHART team yesterday to give a report/interview with them. IHART is an independent team investigating past abuse at New Tribes Mission boarding schools. They’re focusing on one school at a time, and currently they are looking into Tambo’s past – the school in Bolivia I attended. I have to say, the days before the interview I was sick to my stomach anticipating it – but it wasn’t like what I had worried about. They are people who have decades of experience each as detectives and investigators, they are trained and experienced in making people feel comfortable and able to share. It actually was a genuinely cathartic experience to be heard on experiences I had or witnessed during my time at Tambo.

Truthfully, during the 19 years since I graduated I have pushed down my memories because I honestly thought it was just a unique three years that I was a student there – to have that many abusers in one place must have been a bizarre fluke. From 1990-1993, three different men were kicked off the field for sexually abusing minors. Others in leadership were confronted for physical abuse of students. On top of all that was a general atmosphere of verbal and spiritual abuse. Over the last year hearing the stories on the Fanda Eagles site and reconnecting with old friends on Facebook has made it apparent that it wasn’t a fluke, it was a pattern that went on for decades. To me, sharing my piece of that larger story became critical, to help communicate that larger pattern to NTM.

I actually met with four of the investigators. Typically they only send two (and then it’s the same gender as the person being interviewed, so I met with men), and while most of what I personally experienced was physical and verbal abuse – and not as severe as what several of my friends encountered, I had several different perspectives to offer that they wanted to hear; as a former student, as the child of staff members who did report abuse and were branded trouble-makers for it (I was aware of more of the behind the scenes dynamics than other students), and as a trained youth ministry leader who has spent years interacting with risk protection policies and has had training in appropriate policies for interacting with children. I ended up spending about four hours with the team, and it was emotional at times. It was probably a longer interview than normal because I named multiple people, and also spent a lot of time talking about the general tone and structure of how things were at Tambo, and my perspectives on that as a youth worker.

I am glad I did it. When I first left Tambo I spent years training to become a teacher with the intention of going back and fixing it. It was a dangerous place for young people – for years even at the mention of the school I would be filled with this overwhelming rush of anger and frustration over how wrong so much of it had felt. Somewhere around 23 or 24 years old I finally realized I was called to church ministry – that my desire to go back to Tambo was not a calling. While parts of it were good – my heart for protecting young people and making change for good, there were other parts of me that enjoyed the thought of facing the abusers no longer as a child. I had a great mentor that really helped me process my way through some of that. But back to my original statement: I’m glad I met with the IHART team. It felt right to finally do something appropriate and meaningful, both in the sense of giving the appropriate authorities the information they need to confront the abusers, and in giving NTM feedback on how to make changes for current and future missionary kids.

If you experienced a form of abuse at Tambo (physical, sexual, verbal, etc.), or any NTM school, contact Pat Hendrix (the coordinator at IHART, not affiliated with NTM) at pat.mkguardian@gmail.com and let them know. There is no such thing as an experience not significant enough to pass on. And you will not be asked to face your abusers. Besides the desire by NTM to confront abusers, there is also a desire to make change for the future and current/future MK’s. The more information they have on what the climate was like at Tambo (and other boarding schools)e, the better they are able to learn from the past to impact the future. This is a valuable thing. The IHART team wants to listen. They will not solicit interviews, so you need to reach out to them. Don’t be intimidated – they did an amazing job of putting the whole thing at ease for me. They have women that interview women, men that interview men. If you are considering it, don’t trivialize your pain/experiences. If you want to know more about my experience with the IHART team, feel free to ask away.

Missionary kids speaking out about abuse

03 Mar
March 3, 2012

CBN is the latest to report on the growing voices of missionary kids speaking out about the abuse that happened on the mission field to them by missionaries over the the last half a century. You can read their article here. A great blog/website for getting more information or finding ways to report mk abuse is here.

Some have wondered at the timing – why now? Why are so many students suddenly speaking up?

Social media is an incredible thing.

Just a few years ago one boarding school had students speak loud enough and force themselves to be heard. It took years. And they documented the struggle it took to be listened to and finally see it through to changes being made and the mission being forced to make changes to protect current missionary kids. What they thought was simply a way to force the mission to deal with something it avoided by calling them out publicly (a last straw resort after years of being ignored and told to do the Biblical thing and forgive and forget), turned into a rallying cry for missionary kids around the world.

Other students from other schools started sharing their stories of abuse. For so many the assumption was that the sexual, physical, psychological or even spiritual abuse was an anomaly, a unique moment in time not worth making a scene over. Who wants to be the person making a mission organization with such noble goals look bad? It quickly became apparent that the abusive scenarios were not isolated or even rare.

I know I had always assumed that the three years I was at Tambo was just a bizarre time with several sexual abusers and physical abusers. I’ve been horrified to find what I witnessed was actually a common experience for children there for decades before I was there, and continued in the years after. What has been more horrifying is finding out the known abusers then, some of whom were even ‘dealt’ with are still currently serving with the mission in other parts of the world with children still.

Back to my original question, why now. For decades the abusers have managed to keep their victims isolated and quiet. Social media in the form of blogs and private Facebook groups have changed all that. For the first time victims are able to find others in safety, realize their experience was not isolated, and find the courage to unite their voices in demanding something be done about the abusers.

For years after leaving my boarding school I was filled with frustrated anger every time I thought of that place and the abusers still there. For a long time I was determined to become a teacher and go back, not because I felt called but because I wanted to fix what I saw as a broken system. It feels good to know that my voice and other voices can finally help make that happen for missionary kids now and in the future.

My Kindle lasted 48 hours

29 Dec
December 29, 2011

I got a Kindle for Christmas (technically, I got gift cards for Christmas that I then used on a Kindle). This was, of course, very exciting for several reasons. One, I’m a nerd. Two, I like to read. And three, I’ve been wanting to get one for a while now for ministry related books – they’re a lot cheaper in digital form.

Yes, I like reading fiction as well, and have really enjoyed ripping through books on my Kindle app on my iPhone, but some how it doesn’t work as well for me when it’s books of substance.

Anyway, all that to say that I have been loving my Kindle. I’m reading through Blue Like Jazz at the moment – previewing the film ahead of it’s April’s release date reawakened my interest in it (it’s been a long time since I read it). I wanted to remember it all before the film comes out – I’d like to go with a group and be ready to discuss it all after.

But back to my subject line: my Kindle lasted 48 hours.

Micah discovered it. He started reading The Wizard of Oz and couldn’t put it down.

This is both tragic and awesome all at once. I loved the Oz series when I was his age; Frank L. Baum wrote 14 books in the series a hundred years ago. Literally a hundred years ago – I wasn’t just saying that. After he died other authors continued the series with a bunch more books. All of which I started reading when I was ten. It took me a couple years to rip through all of them (and then I read them all again). So it was fun to see him being captivated by the story – and he was even more excited to find out there was a ton more books (and I was excited to find out they’re all free on Kindle). So what’s the tragic part?

I had my Kindle to myself for 48 hours. And now Micah loves it. And I can’t discourage him from reading, right?