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.