My New Style

So...what do you think... do you like my new look?...check out the poll and let me know if it's a keeper or if I should go back. This is the result of a wee bit of boredom...trying to add spunk and flash and keeping things fresh and hip.

Sheldon

Currently things are improving with Sheldon...he has awakened from his coma and has recognized family members. Efforts to remove life support have so far failed as he is unable to breathe comfortably on his own. He has however been able to move his limbs at the request of the medical team. And all this from a kid who showed no brain activity on his EEG just a few short days ago!!! To God be the glory. (For those of you on Facebook, we also have a group called Crazy about Sheldon Swampy....that you are welcome to join)

Ben just returned home from school an hour late. He walked in claiming of an interesting ride...a child on the bus had a grand mal seizure and an ambulance had to be called to pick up the child. What is going on with our babies? Pray for the family.

Uncle Herb Survived

Thank the Lord for a recent time of blessing with Uncle Herb and Aunt Erna....we are of course, most grateful for surviving the door-free (and unobstructed view) helicopter ride without incident. We literally could have had a family tragedy on our hands. Half way through the ride (and of course leaning out the copter to take fab pictures), Uncle Herb realized that his seat belt had accidently become undone. Panic stricken, he fumbled with his restraints and managed to strap himself in once again. We had dropped into the crater of Mt. Waialeale when he noticed. The pilot set the copter down when I turned my head to see Uncle Herb signalling me with his hands. I mentioned to the pilot that he was unrestrained but the guy lifted off anyway. We have no idea how long he was un-restrained but we are so grateful that we did not lose him! Of course, jokes about insurance policies ensued while we were safe and sound and on the ground. The experience got our adrenaline pumping, especially Herb and Erna's. Sorry Dad and Eliana about the scare...I think your brother may be cured from heli flying for awhile. He did get some awesome shots though.

Satan continues to attack the productivity in our ministry. Pray for strength and patience and God's guidance as we head into a new year of ministry. People are coming to Jesus and the church is growing and...Satan is working hard, bringing disunity among His people. Pray for hearts to change and personal agendas to be tossed out the window.

Once again, my camera....my brand new camera...sob..sob...has died. I have to send it to Illinois for repair but luckily it is still under warranty. Hopefully you'll enjoy my selection of not-so-recent photos.

A Hui Hou....Later.

Urgent Prayer Request

Sheldon Swampy Harder is the 13 year old son of Ben and Viola Harder (Winnipeg....and nephew to Abe and Eve Harder) and our son, Benjamin's closest and dearest friend. Sheldon and his family attend Riverwood Church Community.

Sheldon has suddenly contracted a critical form of viral encephalitis. Initial symptoms presented themselves before Christmas in the form of headaches, which when assessed where thought to be of migraine origin. This past Saturday, Sheldon experienced a grand mal seizure and was admitted to the Children's Hospital. There he coded and crashed and has had to have been resuscitated 3 times. They would have lost him if not for the immediate transfer of Sheldon to PICU. Sheldon is currently in a deep coma and the EEG has revealed no brain activity. There is swelling on the brain and he is on life support. A machine is keeping him breathing and another, his blood circulating. Yesterday, he had an NG tube inserted for nutrition and to encourage his organs to maintain their function. The prognosis looked grim but it seems now that they are seeing tiny movements in the right direction provoking a smile out of the doctor.

We are hopeful for the family and praying for a complete restoration to Sheldon's mind and body. God can perform miracles and what a testimony that would be!

This child is an amazing child of God. He was so compassionate and prayed daily for Ben while he was in the hospital. Our sons have such a strong bond, I'm not sure how Ben would manage if he lost his only friend. They have maintained close contact through Skype and MSN using computer cameras. This is devastating to us and of course, more importantly his family. Please....to our prayer warriors, you have been so faithful...may I encourage you to plead with God for this boy's life.

For updates on Sheldon's condition or to learn how to pray more specifically for him...please check out the link Sheldon's Page or http://www.getwellsheldon.blogspot.com/. You can also email Sheldon or his family at getwellsheldon@hotmail.com.

There is always something to say....

It has come to my attention that there is always something to say. Hmm..so whether or not I feel that there is no real news... apparently there really is.

We successfully survived the Christmas season with much thanks to Grandma Warkentin who provided alot of stability to the family. Uncle Dick and Aunt Emily from Morden provided hours of fun with the gift of Canada's version of Monopoly.

We've been blessed this year so far with visits from Grandma, Harold and Jocelyn (FGMB) and now Ed's uncle Herb and aunt Erna who will visit with us for a few days as a part of their trip around the world. What a wonderful time to reconnect with people who have known us for years. I was telling Aunt Erna that one of the hardest parts of the transition is not having close friends nearby who have known you forever...you don't have to constantly explain where you've come from and where you've been.

For our army of prayer warriors all over the world...

Ben has successfully transitioned back to middle school in a self-contained classroom. He wakes at 6:15 am and hops onto a 6:50 am special needs bus to the school where he spends the day in Miss Ryder's class for those with special needs. Now for all of those who know Ben and how intelligent he is...don't worry, this is temporary. He will be re-introduced to each regular ed. class one at a time which is the classic approach according to his psychiatrist. We've been informed that he is coping beautifully and is doing amazingly well....well ahead of what they expected. We have been transferred to a new psychiatrist, Dr. Hamamoto who is both a pediatrician and child psychiatrist from Honolulu. He works at the Queen's Hospital where Ben was admitted and knows the team that worked with him there. He is young, nice and very personable. A huge praise item. In tandem with Dr. Hamamoto, we decided to increase Ben's prozac to 30 mg/day as his compulsions have increased along with the stress of school. He rubs his hands along the carpet (as a part of a OCD ritual) and is beginning to wear down the outer layers of skin on the palms of his hand. The concern is that he will rub them raw leading to infection.

Alyson is constantly "wow-ing" us with her easy going personality and her diligence to her schoolwork. This week, she achieved the Super-Glo Star award which is handed out only to a very select few star students. In grade 3, there are 3 classrooms with maybe a total of 60 students...typically with only 2-3 super- glo stars. This term there were 3 and Alyson was one of them. We are of course extremely proud. This obviously comes from Laurie's side of the family.

Laurie spends her day re-evaluating life and where she now belongs. Emerging battered and bruised from the last several months leads me to times of quiet contemplation with God reading the Word. I also have the dubious task of continuing to provide a healthy environment for my family. This is leading me on a search for rental housing properties in the Kalaheo nieghborhood but away from the church. Through sharing and prayer it has become clear to me that this is a necessary move for a healthy husband and pastor and to reduce stress in the home. As mortgages here are astronomical and without divine intervention, it is likely that we will be renting rather than buying a home in the new future. This of course, is disappointing as we are nearing the 40 year-old mark and would love to start obtaining some equity. Nevertheless, the rentals here can be quite lovely as long as you can afford the $2500-$2800/mo. that they ask. Those of you in Winnipeg will understand the notable cringing... of a monthly rent so high not going to a personal mortgage. You feel my pain.

Ed is coping rather well through life although desperately needs a personal retreat. The two and fro flying from Honolulu during Ben's illness and maintaining his position in the church has left his spirit quite weary and feeling empty. A few beautiful days in Maui were refreshing but also provided an opportunity for Satan to attack. He is so good at what he does.

Thank you for continuing to pray and journey with us. The church is alive and thriving and ultimately people are coming to know the Lord Jesus Christ!! We love the church body and are excited as God constantly reveals himself to us.

Last 2007 Blog

Whew, what a busy holiday season! If you love, love, love the Christmas season, you are likely not married to a pastor. Ha ha!! I love it, although it has become quite the juggling act with church related events and services. Throw in a coupla of funerals and a wedding and well, you'll just never see your pastor husband anywhere near the homestead. I love Christmas, but it's always a relief when its over and life returns to normal.

This blurb is intended just to be a quick update on where Ben is at. Ben has constant support win the form of a behavioural therapist, tutor, skills trainer and autism specialist. To date, Ben has been able to return to school (during the Christmas break with no students present) and fulfill a 4 hour day. Next week, we will work him up to a 6 hour school day so that hopefully, he'll be ready to resume to some regular classes Jan. 14, 2008 when the rest of the students return from break. It's definitely a miracle that helped him get to where he is now. He still faces daily struggles and continues to deal with compulsive behaviour, though less frequently than in the past. What can I say but, God is good.

A very Happy New Year to everyone of you!

ps. Special "Alohas" go out to the Makarusa bunch...we can't wait 'til the next conference! I met Amy N. on Saturday.

Catching Up

Well Ben has been home for almost a month now, the 10 lbs. lost regained and generally walks around with a smile on his face. A welcome relief from the anguish he had earlier from losing control of his thoughts. Life is slowly returning to normal. A home bound program has been initiated to return Ben to normal life as a student, complete with homework. The ultimate goal is to return him to the school setting....baby steps are being taken in that direction. The Christmas school break usually means freedom and travel for most kids; for Ben it means daily schooling and continued work at transitioning back into grade 7. Ambitious...it seems to me...but the transition team says he is ready.

The tree is up and decorated, the gingerbread house candied up and the presents are wrapped. All that is missing is the lovely layer of fresh sparkly, fluffy snow. We have had precipitation though, and quite regularly I might add. We've enjoyed one sunny day since about November 26. The rains are torrential and our town has had numerous flash flood warnings. Not to worry though, our home is on a hill and we are sitting pretty high and dry.

As the housing market continues to soften, we are once again keeping our eyes peeled for a starter home. Even with the market the way it is and low interest rates, it seems inconceivable how we could ever make this happen for our family. Home ownership seems increasingly elusive and has provided hours of frustration to our tired little family. In faith we remind ourselves that God will provide a healthy and relaxing home for the pastor and his family.

Alyson continues to do well and has 100% record of completing homework. She has won several awards for continued good work. Next week she heads out to the movies with a few other classroom "smarties". Last reward was dinner out with the teacher and frog catching at his taro patch, a classic reward passed down from generations (okay maybe not generations) and eagerly anticipated by anyone lucky enough to end up in Mr. Hashimoto's class.

Ed continues to burn the candle at both ends. Work for him right now is non-stop and family life including him is also elusive. With Christmas hot on the tail of Thanksgiving, he won't be breathing until the new year. Pray for continued health for him. Stress and pressure of the season (and regular church life work) certainly takes its toll on the diabetic part of his body.

Laurie is struggling to regain a sense of self following 2 months in Honolulu. My childcare stint complete with tiny income with baby Kyan was cut short by the recent "vacation" to Queen's Hospital. Unable to work and tired of cleaning only to turn around and find a giant mess created by the menehune in my home. Funny how nobody ever claims responsibility for all the stuff laying around. I am however, excited to say that following our income tax filing last year, (we haven't actually received our refund yet...oh well, maybe next year) I received an ITIN number. I was finally able to take that number to the bank and no, not actually get an account.... but become a joint account holder with Ed!!! A year and a half later. I got my name on official bank account paper. Up until now, they would not issue me anything...no debit cards, no check cashing cards, no bank cards whatsoever because I didn't exist. And now with the ITIN number, I'm a real person. A real live person. I am so happy that I'm alive now... because before I wasn't...I guess. But hey, I am getting a debit card in the mail soon. That should take about a month. Nothing happens fast here.

Ben's a Free Man!

HALLELUJAH!!! Ben was discharged on Thursday, Nov. 15 from the Family Treatment Center at Queen's Hospital in Honolulu, Hawaii. Wow, how much more formal can we get! He was extremely excited to "break out" and roasted in our rental car for 45 minutes while I packed up the apartment and checked out. Although he is healthy enough to no longer require 24 hour medical observation, he still struggles daily with anxiety and OCD. Ed and I were thrilled to bring him home, but there is still some apprehension on our part. We are now completely responsible for helping him cope and in the continuation of teaching him his own coping techniques. This week we have minimal assistance with Ben but that will increase next week. We will have a team consisting of a autism specialist, family guidance counsellor, psychiatrist, school psychologist, and working directly with us will be a skills trainer, home bound teacher and behaviour specialist. We have an amazing program set up and are just waiting to plug people into it. The woman who will be our skills trainer is in Israel and she returns at the end of this week. When she returns, it is all systems go! I'm confident that the team will meet Ben's needs and that he will be able to quickly catch up with his peers, academically.

Life is returning to normal (can it be true? is it really? am I dreaming?) and it feels so good to be back home and together again as a family.

Coming Home...I Hope

If all goes as planned, I will be bringing my large bundle of boy home this weekend. The doctor's say, he is as ready as he'll ever be. We are still waiting for temporary home bound assistance until longer term ones are found. Hopefully, the OCD will not do too much damage to Ben in a week's time. This is how long we anticipate having no assistance. Well, if anything unforeseen happens or he takes a turn for the worst, at least we know the ropes and have made the relationships. Thank goodness for that! The initial trauma I wouldn't wish on anyone.

Thank you for the hugs (real and cyber). Please continue on the journey with us a little while longer as we transition him back home and into a home bound school setting. Love to you all.

Ben Update

As my friend Xiam suggests...it's been a week Buller, what's the news?

The 4 day pass went well this last weekend although on Monday and Tuesday, Ben was noticeably in need of structure. Behavioural issues that had popped up on Sunday, reared their ugly heads on Monday and Tuesday. There were several threats to return "the child" to the ward early. It wasn't really a threat though. The staff had notified us that if he got to be too hard to handle, we were welcome to send him back. It did enter our minds more than once though. And we were instructed to use it as a tool to curve behavioural issues. Strict limits had to be set. Expectations had to be VERY clear. Yes, there were tears. Ben was so mad at me, he jammed his foot between the wall and the bed and got it stuck! I held my ground and eventually he loosened his leg and followed through on the instructions.

Things continue to go well. Ed and I are learning which actions to take and when with Ben. Ben is essentially well enough to come home (PRAISE JESUS!!) but at present, we have no support structure in place. We have a program for him to come home to, but we are waiting for a skills trainer and home bound teacher to plug into the program. The hospital will not release him until they are convinced that we have strong support in place in the home.

So ideally it looks like Ben will be on his way home in the next week or so. It is so hard to believe! What a long road!

From Hospital to Apartment Dweller

Ben had a fabulous weekend at home celebrating his birthday. His eyes were saucers when he entered our home on Thursday...fresh from a hospital breakout to his 13th birthday party. Grandma Warkentin was on hand and with Alyson, decorated the home to welcome his return and celebrate his big day. Ben had pre-ordered a steak dinner with potatoes and caesar salad and a large flat chocolate cake from Costco. He ate until he was a stuffed little turkey... although, after the initial gushing and oohing and aahing over the chocolate cake...he had absolutely no interest in eating it!!! Not even a bite! What a little turkey!

The weekend went very well. His OCD tendencies and anxieties seem to improve with each weekend home and we were all very pleased with how well things had gone. He woke up Sunday with a smile, ran down to church and manned the A/V booth. After the service, he called down to me...in smiles...and waved. Happy to be back at home. He did, however, get 'stuck' in the booth and could not exit the room without encouragement and prompting from mom.

To his credit, Ben also made a huge step on Sunday. For weeks he had watched another little boy on his ward go home for the evening and return the next morning for day treatment. He occasionally would bring this concern up to me..."why can't I do that? Mom, I would sleep SO much better if I could stay with you at the apartment." I just assumed this was an appropriate measure taken by the hospital staff for this little boy's particular condition. Well on Sunday...before leaving for the airport to return to Honolulu, Ben resolved himself to ask the doctors if this would be an option for him. To his joy (and his parent's surprise), they agreed with him that it would be an appropriate thing for him as well. So as of Sunday, Ben has been sleeping with his dad at the apartment and returning in the early morning for his daily treatment. When asked how he slept that night...he said, "Oh Mom, it was amazing. I had the best sleep ever!"

Friday, on my way home from a team meeting at Ben's school, I realized just how truly blessed we are. The road's been tough, but the journey amazing. We have been overwhelmed by the support we have received, by the number of people all over the world that have heard our story and have told us that they are praying for our family. And by God's people and their willingness to donate financially so that we don't have to struggle, while we struggle! I am once again reminded that God is a BIG God and has BIG plans for everyone of us. I know, in my heart, that this experience will not only shape us as a family, but is a crucial part of Ben's development as a young teen and as a child of God.

Thanks for coming along on the ride with us. I think you can loosen your crash helmet!! (At least I hope so...please.... God?)

You Sunk My Battleship

Okay...well...I know, I know...it's been a whole week. I can't decide whether I am slipping or whether there's just not much to report. The way I see it...that's not exactly a bad thing. Are we falling under the age-old adage of 'no news is good news?' I think we might be. Honestly, Ben is doing quite well. He looks great, is eating pretty normally and has a very positive outlook on life. Not to say ihe isn't still struggling. That fact remains. The normal everyday struggles of sitting in contaminated chairs, holding a pencil when it's not "school time" and just a general "ants-in-the pants" demeanor. This child cannot sit still for any length of time, which makes it increasingly difficult to maintain any sort of meagre conversation with him. We had a very pleasant visit last evening. After many pleadings on my part to "just please sit down", we retreated to the play room in the ward and played a mean, competitive game of "Battleship". Oddly enough, I lost the game even though I had the extreme advantage of seeing Ben's board every time he flipped it over. I had to maintain some sort of integrity and decorum (as a parent of a child in the hospital), by continuing to play the game out as if I had seen nothing at all. It was tough but I'll live. Ben was thrilled to have won. I won the game just by sharing a smile and a laugh with the greatest son around. The evening ended with prayers and hugs (as it ends every evening) and a promise to see each other again tomorrow.

Ben was so sweet as he sacrificed his afternoon visit with me and allowed me to spend some time with friends on the tour of the Arizona Memorial. Mark and Megan flew to Honolulu with Mark's mom from California and invited me on a "touristy" outing with them. The morning began with an early morning pickup in a "DucK" which is an amphibious vehicle previously used in the Honolulu harbour for transporting ammunition from boat to land. And as I learned, that's where the term "sitting duck" comes from.... AAH.....you say...that was an "aha" moment for me as well. The morning was filled with outdoor displays of giant missiles including a one-man Japanese suicide missile, a rescue chamber for those pesky bottom-of-the-sea submarine rescues, and naval gunner type stuff (sorry...I don't know what you call it). Ooh, my pacifistic veins are quivering!! Of course, as with all tours, costs were extra to see the USS Blowfin and USS Missouri, the submarine and battleship that were rescued after the fateful day of bombing in Pearl Harbour. (December 7, 1941.... of course, all you history buffs knew that though...didn't you??!!) I had to write it in so that I WOULD remember! Needless to say, we did not see the submarine and battleship up close and personal but chose instead to view the short film on Pearl Harbour. This was followed by a short ferry ride, and we were at the Arizona Memorial which was erected in memory of those who died during the surprise attack. The actual memorial is built over top the sunken battleship (I can't remember which one). We peered over the edge, and a murky eery shadow of an earlier era appeared below the surface. Rusty columns perched atop the water are the only immediate visual reminder of the watery tomb. Thousands of men died that day and some still rest on the ocean floor in 'eternal service' to their country.

And so it was interesting enough that Ben and I chose to play battleship the day before I visited the Memorial. As I pondered the chaos and destruction caused by the brass tipped missles, I reflected on the innocence of the game as I played it with Ben the night before. Not so innocent. And then I thought...why does society romanticize war, death and destruction? Why make a game out of it? Why do all nursery rhymes stem from the Black Death or some sort of other plague or poisoning that brings about suffering? What about....Wee Willie Winkie...Ring around the Rosy...Rock-a-bye Baby and other nursery rhymes that developed and evolved after such deadly eras. What kind of a sick people are we anyways??

With that rant out of the way...I am no closer to the answer... but have chosen to ponder on the lesser questions of life...why have all of the birds on this hospital property lost all their toes on one foot?? They have one little grey stub and one healthy foot. What happens to these little digits? Does the resident cat nibble on them when they're not looking? How does a bird with wings to fly, lose its little toes?

I'd be just as happy to have that one questioned answered.


ps. I forgot to add, Ben is being allowed a 4 day pass this weekend as he celebrates his 13th birthday tomorrow!! Hip hip hooray!!!

The Good...and the Bad

Yippee, Yee-Haw and general Hooray!!!

Ben was allowed to escape the ward and fly home to Kauai this past Saturday and Sunday!! For the most part, all went well. Saturday was a day of cranial confusion and Ben's brain immediately 'tried' to slip back into some old and nasty OCD habits. Habits once conquered on the ward in Queen's now presented themselves in the home environment and the transferability of Ben's coping mechanisms required alot of careful watching and encouragement on mom and dad's part. Sunday flew by almost like a breeze...Ben entered the church early to avoid the 'rush of the crowds' and planted himself in the Audio/Visual Booth for the entire service where he belongs. He exclaimed how great it felt to be back on a computer!

Returning to Honolulu on Sunday evening presented no great problems as Queen's Hospital has become somewhat of a safe place for him. The days continue to go well and small baby steps continue to be made. The leaps and bounds of earlier days are gone, but we are thankful that there continues to be improvement daily.

Tuesday morning saw support staff from Kauai meeting in conjunction with the nursing staff for a giant conference to start building bridges for Ben to return to the island and return to school. At the meeting, it was noted by the Hospital Clinical Psychologist, that under extensive testing, Ben scored a whopping 90/100 in his RCMA's! Okay, I felt like whooping it up....that's MY boy...he's a brainiac....oh yeah!....uh ha....okay...no, stop...really... it's not a good thing, i found out. The normal is less than 60. RCMA's stand for Revised Children's Manifest Anxiety Scale. This means that the anxiety that is plaguing Ben was absolutely through the roof. Out of 100 classic anxieties/concerns/ worries, he has a staggering 90 of them!!! Apparently the psychologist feels that he is so anxious about his family unit, and his mom and dad, that he is being hijacked to perform ridiculous rituals so nothing bad will happen to us!! I was stunned....I mean i knew that he always said "I have to do this or something bad will happen" but I never thought he was relating it to our safety. That was a tough one for me. For someone so innocent and young to be consumed about his mom's and dad's well-being.

We do have some good news and some bad news....

GOOD: Ben's doctor's are encouraging as much time at home as possible. This means that Ben will fly home every Friday and back to Honolulu every Sunday evening.

BAD: Ben's in-hospital treatment on Oahu will continue into the middle of November. Any hopes of bringing him home by Oct. 25 were shot out the window at yesterday's meeting. Phooey...

For now, it's business as usual and I'm off for a walk to see a close up/ inspectional display on the masks from the Broadway show, "The Lion King". I am hoping to see elaborate and intricate designs in the masks of Simba, Mufasa, Scar, Nala and Zazu.

A Hui Hou!!

Homecoming....of sorts

I am at home resting after a week-long chest cold....those nasty things here in Kauai head straight for my lungs before I even know it. This means it has been almost a full week since I have been able to see Ben. As I am the 'Keeper of the Blog", it seems to have put me into a sort of disadvantaged place to comment...but well....here goes.......

Ben has appeared to have reached a plateau in his progress. The last month brought a short series of ups and downs but with a marked improvement and we began to recognize the boy who is the Ben we know and love!! Thank you to the Healer. The next step to improvement is seemingly requiring alot more encouragement and mental gymnastics as we try to remain one step ahead of his conniving OCD.

Saturday, Ben and Ed return to Kauai for a weekend pass. Ben is anxious to attend church for "a few minutes". For our loving KMC family...know that Ben will physically look well and hopefully he'll be in good spirits. Please feel free to love him gently but not overwhelm him. We are hoping to create as natural an environment for him as possible. If you already have a relationship with him...please be natural in your conversation.....but if I may request.....this is not the time to initiate relationships in effort to support him. This may overwhelm him if too many people approach him to ask him 'how he is'.

As mentioned earlier, Ben looks physically well but is struggling mentally with delusional thoughts that affect and interefere with his day-to-day living. Please know that whatever we say to him (such as helping him talk back to thoughts) comes as a result of many meetings with psychiatrists and support staff and is meant to help him progress in his fight against OCD.

If there are no blips and if things progress as scheduled, Ben will return to Queen's on Sunday.

I Hate Stress

I've been very hesitant to update....it's now Tuesday and I am sick at home with a nasty chest cold. I'm embarrassed to say all I know is that Ben is doing well but that he's had some "funny" days as his dad reports. When Ed visits Ben during visiting hours, Ben's mind always seems to be on something else. Books, tv, nintendo are all taking priority over actually visiting with Dad. Poor Ed is feeling a bit slighted. I am cheering...after all, isn't that how a normal 12 year old boy is supposed to act?

Here is the reason for my hesitancy....Saturday we were blessed with 8 rapturous whole hours outside the hospital with Ben!!! We toured the Aloha Tower and the Marine Museum where they have a rare skeleton of an enormous Blue Whale. All was going well...until the accumulating stress of the last few months chose to rear its ugly head between Mom and Dad. Oh, what bad timing!! It seems a volcano was made of an ant hill and things just erupted into a mean full blown argument. Oh...the shame!!! Why couldn't it have picked a better time? We were out with our whole family for just 1 day. ONE DAY!! Boy, Satan was just picking on us! The last 3 hours or so (we hang our heads) was a bust. Ben was extremely gracious in his attempt to mediate but alas, Mom's hormones made her grumpy. Need I say more??

A Better Day

Well Ben was released into our care from 12 - 4 pm. yesterday. Mom and Dad were a little nervous because of his recent setback, but in a direct answer to prayer, Ben bounced right back and is doing quite well again. Ah...this roller coaster of life. As my friend Tamara put it..."Why does this life have to be so hard?"

We spent a quiet afternoon together with Ben after dropping Alyson off at the Ice Palace with some friends. Believe it or not....they do have an ice skating rink on Oahu...but I'd bet the farm that the arena temperature wasn't as cold as the rinks back in Canada. It felt a little too comfortable in there with my shorts on!!

Ben coped well in the outside world with only little glitches/ anxieties to work through. It was a very special time filled with laughter and honestly, just plain relief at having some normalcy in our lives.

This afternoon, Aly and I went to visit Ben and had fun playing together. A huge praise item is that Ben was finally able to play Nintendo. Now normally, I would not be cheering for this, but because of his sensory issues and anxieties, Ben has not been able to touch/pick-up a phone, remote, computer keyboard or anything else for the last 2 months. Yesterday, he fixed a remote control (that another patient had thrown against a wall and broke) and today he showed me the video game that he was playing earlier!!! THIS IS REALLY HUGE!!!! I don't like Nintendo but I love what it is currently able to bring out in my son.

Now THIS is more like it!!

How Much Can It Hold?

Nobody has ever measured, not even the poets, how much the heart can hold. ~Zelda Fitzgerald

This quote was sent to us by some wonderful friends from the Makarusa Missionary Church. It really struck me as it encapsulates how Ed and I feel on a day to day basis.

We've had so many challenges these last few weeks...and have also successfully realized the payoffs of hard work. And then...these last few days....oy....Ben experienced a dramatic regression. The delusional thoughts came back and along with them, the entrapment of a 12 year old boy ensnared by an illogical brain. With no warning, we were back to square one. ARG.........WE HAD MADE SUCH GOOD PROGRESS!!

Oh God, how many times Lord, can we cry out...

With the Risperdal once again administered and the fight back on, Ben and his parents are learning (it is SO hard) to fight back against the taunts of OCD in its severest form. He has to learn to label OCD as the "bad part" of his brain and verbally talk back to it telling it to go away. Once he can successfuly overcome these horrible thoughts presented by OCD, he can overcome its lies.

Ben was scheduled for a 4 hour outing this afternoon with our family, but the nursing staff are currently unable to confirm the physician's request. With the regression, we don't know if it will be honored. And so at this point we don't know if he'll be able join us outside the hospital.

As for Alyson, we are enjoying our time with her. Yesterday, she and I went to the Honolulu Zoo and Aquarium for the afternoon to relax and forget about life for awhile. Today...well...we were hoping to complete the family with a fun afternoon. That remains to be seen.

Ben

Our afternoon visit with Ben was cut short by a meeting with the psychiatrist working on Ben's case. She invited him to attend so he could spend time with us on the condition that he would sit in a certain chair (one that reminded him of school). Even his desire to be with us couldn't overcome the fear he had of sitting in that chair and 50 minutes went by without him. We could hear him crying in the other room but the psychiatrist was very firm with him....in effort to help him face and overcome his fears.

We were left with a short 10 minute visit with our very unhappy son.

On the bright side, a friend of ours flew Alyson to Honolulu so she could be with us during the week long fall break. We are excited to be reunited with her!!

Another Update

Well guess what? My brain suddenly cleared from the fog....and...I had an epiphany!! There is a medical library on campus, that guess what....has internet access!!! You guessed it. It sure took me long enough, but there should be no excuses now!! I am one smart cookie...when my brain isn't tired and full.

Benjamin has had several good days in a row now. His personality is starting to return and he is joking/teasing his mom and dad, and the staff. It is wonderful that the staff is beginning to see the fun and gentle pre-teen that he truly is. He is eating, drinking, showering, talking, opening doors...all those things we take for granted were a struggle for him. Now he is able to do them normally. He is still having difficulties with school associations, both verbally and physically. He cringes at the mention of school, pencil, classroom, etc. and his hand is "paralyzed" and literally useless for the rest of the day if it even so much as touches a pencil. Sitting on certain chairs is hard, as well as entering specific rooms such as the sensory room on the ward. He still has quite a severe and active head bob/tic and we are hoping that those will decrease as his exposure to things increases.

He looks good and says he feels great! He has mentioned to me that the prayers of God's people are working. We encourage you to continue praying up until his release and until his transfer home has been completed successfully.

Saturday we had a tiny scare in that the nurses overdosed him on the anti-psychotic drug, Risperdal. The drug is supposed to relieve the bad/illogical thoughts in his brain. With the accidental overdose, came a temporary condition called "Dystonia" where his muscles in this left arm and neck contracted and moved involuntarily. It was off set by an administration of Benadryl and so far, has had no lasting effects.

We are looking forward to next week as Alyson has fall break (one week off), and she will come to Honolulu to stay with us. Ben has promised to work hard and in turn, we are hoping that the doctor's will grant him a few hours outside the ward to head to the zoo or waterpark for some family fun .

Our goal is to have Ben healthy enough to be released by his birthday, which is Oct. 25. Of course, we are hoping for sooner but to ease any further disappointments, we are thinking worse case scenario.

Again, I cannot say enough how much your prayers mean to us!! I cannot imagine going through this alone, and with no hope or Jesus in our hearts. How do non-believers do it?

Another Good Day

Short and sweet today...Ben was able to go to class (on the psych ward) and complete his assignments in class, slept well, ate and drank to the staff's satisfaction, made his own lunch with the other children...pizza ... AND... offered to make another for the staff!! That's huge!!

I think the meds are kicking in!!!

Thank you...Jesus!!

A Good Day...it's a Relative Thing

A good day for others might be a job promotion, raise, visit from an old friend, or just...no problems to deal with, at work or home.

Yesterday, Ben had a good day. For him that means he was able to put on sweats, brush his teeth, open a door and sat on a chair for 5 minutes!!! Oh yeah baby, FIVE!! Good?...well GREAT I'd say...let me tell you...this kid forged mountains yesterday!

What seems oddly enough like an everyday-don't-even-think-about task has literally become an obstacle for Ben. He was unable to sleep the other night because his couldn't lie down on his bed. Someone else had touched it. He stood all night and went without sleep. He was very pale and exhausted yesterday when we visited him. It was all I could do to prevent myself from scooping him up and taking him home.

The other night after a second dose of the anti-psycotic medication...Ben looked at us in fear, tears rolling down his pale cheek...and burst out "something's wrong, something's really wrong in my head." I have to say, I kind of got worried about a drug interaction but the symptoms decreased and he was much calmer (though anxious and exhausted) yesterday.

I flew home this a.m. for a brief 30 hours or so to welcome Grandma and arrange the home for her to take care of Aly. I am flying back to Honolulu Friday evening to relieve Ed so he can return to Kauai and preach on Sunday.

Baby steps and small mercies.

Ben Update

I apologize for the lapse in blogging, but it has been near impossible to connect to the internet for almost a week. Praise God we were able to resolve that today!

Sept. 11, after a traumatic flurry of events (including an MRI and Pediatric Neuro Consult--all normal, no organic explanation for the symptoms) Ben was admitted to the Child Psychiatric ward in Queen's Medical Center, Honolulu. It's aptly named the Family Treatment Center. He was admitted under the diagnosis of psychosis, acute anxiety and OCD. It is a locked unit with many rules and regulations but the staff seem knowledgable. It was hard at first to be denied access to our child and we were allowed to bend the rules initially but have now been restricted to visiting during the hours of 1-2 pm and 7-8 pm which is double the normal visiting hours.

After a week of not eating and drinking, we cheered as baby steps were taken with Ben's first sip of water. He was SO dehydrated and so dry. The physician's orders were to initiate an IV Bolus 3x/day and NG tube if liquids were not immediately ingested. At this time, the liquids remain an easier sell than food. His intake of the latter is still very minimal.

Today was a great day in the sense that Ben was able to have Prozac administered alongside an anti-psychotic drug named Rispiradol (?sp) that will help alleviate the delusional thoughts swirling around his brain. We were able to get him to eat honey ham today as well as 1 grape and 450ml of a nutritional fruit drink. He met his liquid quota for the day and we were extremely proud of him.

Our best case scenario for release would include a miracle...that would be release from the hospital in a weeks time. Ben is still considered acute and realistically will be in another 2 weeks. If things progress more slowly, he will be deemed a sub-acute case, and it may be another month or two before he is released. Of course, we are praying for the miracle.

A huge hug and thanks for those who have been faithfully praying for our family and supporting us in more practical ways. We cherish each and every one of you. To our family in Winnipeg and in the rest of Canada, we love you. Rest assured that we have friends that are family here that are constantly checking in on us. Three couples here alone in Honolulu have been tremendous in their support for us.

Please continue to pray to the Healer, and Calmer of Ben's fears. Pray for sleep for Ben as his nights have been hard. Pray for strength and clarity of mind for his exhausted parents.

We love you all.