Monday, May 30, 2011

Memorial Day in Alaska

Ours is a family rich in military tradition. Yukon's father was a submariner in WWII and beyond, and Wolf's paternal grandfather was not only a Chief in the Navy, he was also a prisoner of war in the famous (and notorious) Burma/Thailand area. Yukon works hard every day to enhance the lives of veterans in Alaska. Both sons have grown up appreciating and embracing the difficult jobs of service members and their families sacrificing everything, sometimes, for the sake of their country.

As a member of the VA Healthcare System in Anchorage, Yukon was expected to attend the annual Memorial Day ceremonies at Joint Base Elmendorf-Richardson. A beautiful location for a final resting place of men and women of our armed forces, the Fort Richardson National Cemetery was sunny and warm today, with a light breeze just right for setting our American and Alaska flags to fluttering.

The last time we attended as a family Bear was but a preschooler and found the music just fine but the speeches, not. This year, however, his attention span and empathy for other people had matured. The photos above show just how powerfully he was affected by today's events.

One family had just buried a son not ten days earlier, and had come bravely to the ceremony. Bear watched solemnly as mother, little brothers, and girlfriend sobbed at his freshly placed headstone, flowers trembling in their hands.

When the 21-gun salute was announced, he asked why they fired off guns when soldiers died. Yukon explained it was a respectful way of sending a soldier off to heaven. I watched widows, some in their late 80's, shudder as they heard the shots, bowing their heads with remembrance of their own, personal link with such a salute, and I was amazed at their fortitude.

Bear got it. He held his ball cap over his heart as Taps wafted, in echo, across the wide expanse of Alaskan acreage, lilting and lifting and eventually fading away into the warm, breezy afternoon.

Friday, May 27, 2011

Disney Dreaming: How Would Wolf Handle the Magic Kingdom?

Yukon and I knew we might be heading into hot water with Wolf when we conducted our weekly Hour of Power via the room phone from the 9th floor of the Disneyland Hotel suite thoughtfully provided for us by Disney.

Wolf, I'm sure, feels bad sometimes when Bear gets to go places he doesn't, and justifiably so. I'd be ticked if it were me. Disneyland is the top of most kids' fantasy vacation list, and our oldest son's was no different.

I'd spent two whirlwind days exploring Disneyland and adjoining California Adventure with six year-old and 49 year-old children. Park work, part play, it was my job to find the undiscovered, or at least unwritten-about "little things" at both parks. Thinking about Wolf was constant, but not always despairingly so.

I learned this about Disney: If a child wishes to visit the park and has particular needs, be they physical, mental, social, or otherwise, Disney will make sure it happens. We saw kids in wheelchairs who had broken legs two days before leaving home for the vacation of a lifetime. Kids undergoing chemotherapy, kids with cerebral palsy, sight-impaired children, children in foster care; they were all there, and all were treated with respect and dignity and, most important, just like everybody else. Isn't that what all kids want?

It is comforting to know that should we decide to take Wolf to Disneyland, they would take care of him. And us.

Monday, May 23, 2011

From the Wolf Den: "Not Otherwise Specified"

As we begin the tedious and anxious process of bringing Wolf back to Alaska this summer, I am relearning all the disability-Wolf-related terminology and jargon once so familiar to me.

As trite and perhaps crass is it may sound; I've been glad to rid my mind of these terms for a while. As any parent of a disabled child knows, diagnoses with acronyms like AS, FASD, ADHD, and NOS become more familiar than our children's names. Not for our lack of trying to make it otherwise, be assured. But medical people and social workers and teachers find it easier to refer to our kids by these letters, and one we've been hearing a lot lately is "NOS".

Standing for "Not Otherwise Specified", it sounds like a cop-out, a diagnosis-without-a-diagnosis to make sure a child has something listed in the medical box on forms for school, medical assistance, therapy, you name it. Apparently, we've learned over the years, a blank box is B.A.D. Wolf's current diagnoses are many, the latest of which is NOS, because, I suppose, one cannot put in the blank box "Pain In the Ass" as a qualified medical diagnosis.

The Fairbanks North Star Borough has made that perfectly clear, in the most polite way, of course. Wolf's admittance into an accredited residential treatment program was not enough, and I found out a signed, sealed, and delivered diagnosis is required for him to qualify for special education his senior year. We are in a bit of a quandry, too, because Wolf never received an IEP (another acronym standing for Individualized Education Plan/Program) over his school years K-11.


He was never considered to be in enough trouble. Ironically, according to the Anchorage School District, special education department heads wanted to avoid "labeling" my son.

Good grief.

Friday, May 20, 2011

Enraptured by the Rapture

I will say that this whole Rapture silliness was funnier before I talked with my teenager, who believed all the hype and truly did think the world was coming to an end.

This must be terribly confusing for he and others with similar disabilities like him, who take everything literally.

Part of me thinks, though, that I busted his bubble when I said the zombies were not coming to take over the earth. His favorite book is the Zombie Survival Guide.

Good gracious. Enough already.

Thursday, May 19, 2011

What a Day

It's the last day of school for my children, and a milestone day for Yukon. Me? I'm just the recorder.....

Bear: Finished kindergarten. I will allow this fact to sink in later, probably when he gets up earlier than a normal school day and asks if he can watch cartoons. After an agonizingly long wait, cajoling and rewarding and scolding, he finally received his second "Sprachmeister" (speech master) badge for speaking German for 20 days in that classroom (1/2 of every school day). Bear is nothing if not stubborn, sometimes. I look forward to First grade. This ought to be good. Oh, the hair in the photos. It was crazy hair day, so I sprayed the child's hair orange.

Wolf: Achieved and maintained Level 4 at CHYC and was able to go river rafting with the other boys on his unit. This is the first recreation outing he's been able to go on in almost 18 months. Incredible. I have not heard much from him today, but I assume that's because he's all worn out. At least, I hope so.

Yukon: Left his bulky polyester splint behind and is now a free man. Splint is to be worn at night, but seeing him look at his arm like one looks at a long-lost love was quite humorous (get it?). There is quite a bit of stiffness, however, and unless he gets to exercising the arm, he'll have to go in for a procedure to get that rusty hinge of an elbow to bend. I don't want to even think about that. I don't think he does, either, because every time I see him he's bending, flexing, and grimacing.....

Me: Beyond excited that three of us will board a plane Monday night for southern California on behalf of JetBlue for their inaugural flight from Anchorage to Long Beach. From there, Disneyland will host "AK Fam" as we surprise Bear with three days of Disneydom....

It's been a good day. We deserve a good day around here.

Sunday, May 15, 2011

Bear Blows 'Em Away. What I Learned from Wolf.

As my children grow up and begin to manifest their unique talents and skills separate from what I as their mother think ought to be said unique talents and skills, I am amazed. Amazed that they have managed to do so despite my prodding and pushing to do other things. Funny how parenting is like that.

With Wolf we tried all sports and activities, quickly finding that those requiring team spirit were not exactly successful. Duh. Children with Asperger Syndrome prefer singular sports and such, and Wolf did exactly that, enjoying Taekwondo and roller blading and Nordic skiing, as long as things moved along at his preferred pace. Fine with me, once I let him be. Ever tried to make a kid like something he a) has little coordination, ability, or social skills or b) hates because of a). Letting Wolf simply embrace the things he loved was the biggest motivator for raising Bear to do the same, minus all the slip-ups.

Bear does not have poor coordination or pitiful social skills. On the contrary, he is quite an athletic youngster which, if he belonged to other parents, could have driven him toward early learning on the baseball diamond or soccer field. But he doesn't, and we don't.

Bear likes to do the things he likes to do, and since we've already been down this road, we let him, within reason. He wanted to do taekwondo, but after three years became weary of the not-so-fun-anymore format, so at the end of our contract we let him quit. He likes to ski really, really fast but we keep that within reason too with family ski days and plenty of freewheeling time on the slopes. What he really likes, though, is to run. And run. And run.

He ran a race last week with me as his "guide". A 3k sponsored by our local running club and the first "official" race of the season, the Do Run Run was an out-and-back race with only three other kids and a bunch of grownups. Our only goal, if you can call it that, was to "run" the whole way, since Bear, like most kids, dashes out at the start only to huff and puff 50 yards later in exhaustion. Good enough.

We ran together, he and I, with his big old feet slapping the pavement but with a highly-qualified runner's stature, arms pumping evenly at his sides, steady pace, and head up high. Ran the whole way, Bear did, and when we arrived at the final 1/2 k mark, I told him to give it all he had for the finish line. So he did, passing all the other kids and a good number of adults to finish 4th. Overall.

Yukon didn't even have a chance to take his picture crossing the finish line because he assumed we'd be at the back.

Bear crossed the line, cheeks pink with pleasure and wiping his sweaty head with his Running Club ball cap, a treasured possession. "Can I have a cookie, now?" he asked.

Saturday, May 14, 2011


Five weeks after Yukon's accident, spring seems to have really arrived in Alaska. A fine, green mist of new leaves covers the bony branches of our birch and cottonwood and willow trees, and grass is tentatively beginning to show up under shaded areas of our yard.

Sporting a little more mobility every day, Yukon continues his recovery slowly but steadily, and we hope this continual slog upward will prove positive in the weeks to come. The pins are due to come out of his elbow around June 1st, when physical therapy will ramp up to recovery mode. At this point, therapy focuses on slowing edema (swelling) and mobility of shoulder, wrist, and fingers in addition to the limited elbow exercises our friend and PT pro insists upon three times a day.

Yukon is tired, to be sure, but given permission to return to work full-time has been a blessing, overall. I do have to remind him not to overdue, but with an "all clear" from his doctor regarding the embolism and DVT, he can work, and work out, at his discretion. Finally.

Thursday evening our family participated in the local running club's first race of the season. Called, appropriately enough, the "Do Run Run", Yukon decided to pin on a bib and give it a try, eventually walking a 2k and welcoming a very successful Bear (and moi) at the finish line. (Bear, btw, flew through his 3k race with a very impressive 4th place finish).

Last night we went on our first Date Night since the accident. Nothing fancy; just dinner at a local pub and a walk around Potter Marsh, a wildlife/bird refuge affording beautiful views of Cook Inlet, the Chugach range, and the marshy grasslands housing hundreds of migrating birds.

It's been a long time since we could walk along together for no particular reason at all. Not across a medical office parking lot or the pharmacy or the office. Just walking.

Wednesday, May 11, 2011

From the Wolf Den: A Lesson in Suffering and a Light Through the Darkness

I just hung up the phone after talking my teenage son down from a ledge of darkness. I hope.

(Yes, all appropriate staff have been notified at CHYC of the current situation, before anyone becomes alarmed)

I almost wasn't here tonight to take this call.

Wolf called tonight and almost immediately I could sense all was not well in his world. It's so, so hard to gauge his mood, affect, and sense of self over the phone that my brain has to do a mental checklist of possible reasons for his lowered voice and muttered answers to "How's it going?"

He was still doing well on the Unit. Still on Level. School was going "fine". Medications were still okay. I'll bite: "So what seems to be happening to make you so sad-sounding?"

"I can't tell you because I'll disappoint you." Bingo. This is a tactic used by Wolf to preface a really, really big announcement that once probed and pulled and yanked, usually results in what's really on his mind. From a parent's perspective, however, there is no worse feeling than a child saying he can't tell something because he fears repercussions. My brain said "Oh Sugar." But not really Sugar.

I took a big swig from my Red Chair Ale (my mom-evening-alone-beverage), followed that with a big breath, and said in my best therapist voice, "Tell me about it."

What he told me factually doesn't matter. What he told me figuratively does. Bottled up inside that constantly-revolving and evolving brain of his was the "whys" of suffering, death, and pain. Still grieving the loss of his cousin a few months ago, Wolf is consumed. He is confused and is grasping at anything that will be sympathetic to the darkness he feels.

It is hard enough to explain death and dying to grownups; it is doubly so when explaining such to a young man in a child's body. Going back to the basics of love, life, and learning, I reiterated how much the people in his life love and cherish him for him, and nothing could ever change that. But also, that Life as a rule is full of suffering. Things are born and, if lucky, live full lives. But sometimes they do not. We talked about God and the power to change this fact if He wanted to. Yes, indeed. He could.

But, I asked, who would we be as humans able to make decisions about what we do and how we act, if God made all the decisions for us?

I don't know if I made any sense at all, but the whole exchange gave me pause, especially after the suffering in our family this spring.

I left Wolf with one final thought: You are never, ever, ever alone. Not for one second.

Monday, May 9, 2011

My Mother's Day Contribution in Anchorage

I blog for a fabulous radio show called Kids These Days!Radio in Anchorage, broadcast on our local NPR affiliate station. It occurred to me that some of you could care less about my Alaska travel stuff and want more about our family life. The KTD blog is a nice combination of the two, blending travel with Yukon and Bear (and hopefully soon, Wolf), and how we make it all work so other families can make it work, too.

Last Friday I did a post about the most significant Mother's Day to date; and how Yukon and I relied upon a shadowy trail to bring us out of our confusion and utter relief.

Here it is, all about our other mother; Earth.

Sunday, May 8, 2011

From and To the Wolf Den Today

This is the day I sit down and reflect upon my son's journey. Well, the whole family's journey, really.

Who we were and where we were and what we were doing, and who, where, and what we are now...

This to this. That to that. There to there.

One child's disability leading to an entire family's evolution.

Monday, May 2, 2011


I think I reached the pinnacle of sanity last Friday. We were beginning the process of adjusting to our family's "new normal"after Yukon's accident, getting him back behind the wheel of his beloved Ford Valdez, allowing him to breathe without me in the room, that sort of stuff. We had a delightful, meaningful Easter together, quietly enjoying each other's presence and the beautiful day. I finally began to get my own projects under control, including a huge grant for our pastor's sabbatical in 2012 and a participant guide for the upcoming Mayor's Marathon in Anchorage, mixed in with a thousand other little things a business owner must do.

Yeah, what was I thinking? Yukon of course was overdoing things a little, as I suppose any of us would when allowed back into the realm of our regular world. I stopped by his office to drop off a car key and noticed as soon as he walked out of the building the familiar shuffling gait, the pale face, the reluctance to respond to my inquiry of "How do you feel?"

Shaking, I told him to call his doctor and tell him he was on the way. I had to take some friends to the airport and it was too late to find someone else, so we asked Yukon's coworker (god bless him) to take him to the doctor's office and I would meet them there. I drove my friends like a crazy woman to the airport, dumped them off at the door, and raced back to the physician's office, where co-worker sat nervously reading a magazine.

Running up and down hallways with a jigsaw puzzle of closed doors, I finally found Yukon and the doctor discussing a plan. "Can you take him over to the ER for another CT scan?" Dr. asked. Crap. Of course I will.

ER staff said "Hello, are you back again?" (I've decided this is not such a bad thing), hospital chaplain friend thought I was joking when I said we were baaaack, as did another friend who had to pick up Bear from school, again. Sigh.

Nurses listened and were concerned about lack of breath sounds, (his not mine). Scheduled him for CT and ultrasound, said it would be a bit of a wait while they recorded EKG and such. I left to ostensibly let The Dog out of his kennel and grab some things for a long stay, just in case.

I sat in my car sobbing. Positively gushing tears for a scared Yukon, an exhausted me, and two boys who I feared might not be in the presence of their father for much longer. I simply could not stand one more minute. Not one.

After three hours of nail biting tension, we found out Yukon had experienced an asthma attack due to his increased activity and all the dust in our Anchorage air. The CT and ultrasound showed, thankfully, no sign of pulmonary embolus or the offending clot in his leg. Good news.

When we were about to be released from the ER and the nurse was out of the room getting our paperwork, Yukon looked at me from his narrow bed, still attached to tubes and wires.

He started to cry.

"I was so afraid for you," he said.

I think we've all had enough of this.