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A Special Wedding Guest

  • Posted on October 19, 2012 at 7:55 PM

Last Saturday, Mark, Willy, and I attended a wedding. The bride was one of Willy’s first therapists and the only therapist from that time that is still in his life. (Because I don’t share names without express permission she will be known as “the bride” for the sake of this post.)

The bride has been a big part of Willy’s life for over half his life, so I wasn’t too surprised when we received an invitation to her wedding. Along with the invitation, we received a handwritten note that said that though the invitation requested a “kids-free” wedding and reception, Willy was a special exception. Willy was the only child invited to the wedding and the reception. That was something of a surprise.

When I sent the RSVP card back, I’d selected from the dinner choices available for the three of us. Then, the bride sent a message via Facebook, offering to request the caterers prepare a special meal for Willy, which I readily accepted. (I don’t think I mentioned it at the time, but Willy had been near tears when we told him he wouldn’t be able to order a hamburger and he grinned when he found out that, as it turned out, a plain hamburger on a bun without seeds would be provided for him. He also got a bowl full of sliced apples and sliced green peppers, instead of a salad, which he gobbled up as fast as he could stuff the pieces in his mouth.) So, once again, Willy was a special exception, and all things considered it was a very good idea. I was very touched that the bride was so thoughtful and accommodating, even though I’m sure she had her hands full with all the different pieces that go into pulling off a wedding.

Willy was excited and he was determined to make a good appearance. So, I took Willy to the store to pick out an appropriate outfit. I wanted to make sure he was dressed appropriately for a wedding, especially considering the bride has a knack for style. Willy, on the other hand, had a mind to be “cool” for the wedding. We compromised. I guided him to the appropriate dress clothes and he picked out a colorful dress shirt (bright blue), a sports coat (dark blue), and dress slacks (also dark blue, because I insisted). He also picked out a hat. I’m not much up on hats, but I think it’s called a “bowler” hat. Anyway, it has a brim that goes all the way around and is rather like the ones you see in old detective/mobster movies, except this one had a band that had bright blue zigzags on it (because I made him put back the one that had a band with skulls and skateboards on it). I also used this as an “excuse” to convince Willy to get a new pair of shoes (he went up a size and a half!), which he’d been resisting for months. (I also bought myself a new dress and calf-high boots, but that’s because I’m a “girl” and into clothes a little bit more than I should be, even if I’m not nearly as good at it as some of my peers. Besides, I checked and I didn’t have anything to wear to a wedding.)

All decked out in his new duds, Willy made a striking addition to the celebrants. I was a bit surprised when the bride’s mother welcomed us so profusely when we arrived, but then I’m not quite as social as the mother-of-the-bride role calls for. Let’s just say, when it came to my own wedding I “fought” to keep the party as small as possible, while my mother and my mother-in-law-to-be kept adding to the guest list and still didn’t invite as many as they’d have liked.

During the ceremony, the father-of-the-bride gave a speech, kind of like a sermon about the couple who were being joined in holy matrimony. Once again, I was surprised. In this speech about the formative years of the bride and the groom, about their coming together, and about their future together, Willy was mentioned as a key milestone in the bride’s life. I was floored and Willy was astounded (and slightly disruptive. “He just said my name!”). Then again, when the minister asked, “Who gives this bride?” Willy raised his hand and tried to stand up. (This was Willy’s first wedding, after all.)

I knew that Willy and the bride had had a profound impact on each other’s lives. This lovely young woman has seen our family at some of our most difficult moments and she’s still here. She’s coaxed Willy through some of life’s major milestones. With her help, Willy regained the use of his words and became the remarkable, capable, and functional young man that he now is. She came into Willy’s life because it was her job, but became a friend that Willy will carry with him for the rest of his life because she is the remarkable, wonderful, compassionate, and loving young woman that she is.

I knew this. I really did! But, I guess, until her wedding I didn’t realize quite how mutual this impact has been.

The groom was someone we had not met before—by “we” I mean Mark and me. So, during the pre-reception drinks and appetizers, I was once again surprised when the mother-of-the-groom realized who Willy was, and thus who we were. (I’m used to being recognized by people I don’t remember, but that’s just because I’m bad at remembering faces and names; it’s usually people we’ve met before.) I was even more surprised by her reaction. She asked us to wait where we were while she tracked down the photographer, saying she knew the couple would want a picture of us.

This was their special day, but in a way it was Willy’s special day, too. The bride made time to spend with Willy on her very special day. She made sure Willy had a meal that he would find appetizing—and he enjoyed it very much. We stayed a little longer than we intended, because the bride wanted a dance with Willy—and we weren’t going to miss that. (She even pulled me onto the dance floor, which is how I realized that I am way out of practice when it comes to maneuvering in heels!)

Willy was mentioned in toasts, his picture was in the slide show, and it just became abundantly clear that Willy was a minor star in their major event. And I can say he needed the boost to his esteem. He’s had a rough time lately. At one point, even before the toasts and the slide show, Willy was so touched by all this attention, he said, in a rather surprised voice, “I guess [the bride] really does care about me!” Her response? “Duh!” Classic!

Thoughts and Well-Wishes

  • Posted on August 3, 2012 at 8:00 AM

First, I’d like to thank you all for your positive thoughts, comments, and well-wishes for Willy. For those of you who don’t know, he’s going through a tough time now. Shortly after summer kicked into full swing, Willy started having mini-seizures that we didn’t recognize as such at first. Then, when we went up to Colorado to visit my brother, he had his first grand mal seizure. Since then, these mini-seizures (which a little birdie has told me are called “walking seizures”) are happening with more frequency—we’re up to 3 to 5 a day now—and more intensity.

As you might imagine, Willy is scared. His anxiety is through the roof. He wants it to stop. And he’s praying for God to make the seizures stop and is asking others to join him in his prayers.

He also wants people to know that we tell him about the positive thoughts, comments, and well-wishes people are sending his way, and he’s very grateful for them. He’s cried “tears of joy” to know so many people care.

Thank you all, and please keep them coming!

Grand Mal—Part 2

  • Posted on July 4, 2012 at 8:00 AM

The ambulance arrives.  The paramedics come in.  I think in the jumble of words the clog up the processing of my mind, “What’s the difference between an EMT and a paramedic?”

I have no answer, except that the EMTs were quicker, because they were local to the mountain, and the paramedics had to come all the way from Boulder.

The paramedics ask the same questions, plus more questions.  I repeat everything.  Willy can walk now.  He doesn’t want to go.  “Not a choice.”  We make it into the ambulance somehow.  Moths cover everything.  They’re inside the ambulance.  Hundreds of them, maybe thousands.  Willy’s in the bed, one paramedic is hooking him up to their equipment.  Relax.  Help is here.  I sit.  Dizziness.  Pain.  Fear.  Panic.  “Is this a good spot for me to sit?”  It is.  I buckle myself in.  I caress Willy’s cheek.  We’re waiting.  Someone—the EMTs, I think—remember Willy’s special pillow and special blanket.  Good.  He was so insistent that we bring them, and I had to leave behind the extra clothes to make room in our bags.  He needs them even more now.  The moths aren’t gone, but there’s less of them.  Banging as one paramedic communicates to the other that it’s time to go.  The ambulance rocks as it sets off into the darkness of the mountain roads.  I look behind, eyes unfocused, caressing Willy’s cheek as the paramedic finishes the last of his tasks to keep Willy stable.  Willy can sleep now and he does.

The paramedic in the ambulance with me is wonderful.  He keeps up a conversation.  Slowly the two sides of my brain coalesce.  I learn that my headache is probably due to the altitude.  That Wisconsin is “about 80% humidity” and Colorado is “about 5%.”  I need to drink more water.  I need to take things slow.  He promises to get me some water as soon as we get there.  We talk, me still a bit dazed, about autism, seizures, altitude, writing.  Once he’s given and received all the necessary information, we settle on the topic of writing.  This calms me.  By then, Willy is sleeping soundly.  He helps me pull myself together, merging the two parts of my brain, giving me the ability to be both comforting and rational, coherently so.  Of all the people who participated in this unwanted adventure, of all the people from my brother to the EMTs, from my mother to the nurse, it is this paramedic I am most grateful for—he took care of Willy’s physical needs, treating him just as respectfully and patiently and wonderfully as I would want, and he took care of my emotional needs, giving me the time and support I needed to brace myself for the rest of this adventure.  It was a forty-minute trip back to down the mountain, to the hospital.  In those forty-minutes I went from barely functioning fragments back to a cohesive whole.

I notice a pair of headlights following, and I know it must be my brother and mother.  I see that there are lights at the back and I wonder what they are.  In time, I realize they coincide with the brake and turn signal lights.  I’m briefly proud of myself for figuring this out.  Shortly, he’s facing forward, preparing Willy for his departure, and we sway.  The paramedic smiles and says, “We need those lights up there,” pointing above my head.

Willy’s ready for his departure by the time the vehicle stops.  My depth perception seems a bit out of whack, because we seem to be parked right up against a wall.  But there’s room for the bed to come down and there’s room for me to climb down.  I’m unsteady on my feet.  We make it to the room.  I start to fragment again.  There’s people.  Helping Willy.  The curtain is pulled so I don’t see what they’re doing.  People talking to me.  I must have made enough sense, because they nod their understanding.  It seems a long time, but the curtain is drawn back, the paramedic is there, hands me a water bottle.  I drink.  I find I’m very thirsty and I drink again.  By the time the bottle is half-gone, I start to feel better.  Things are quiet now.

I get permission to bring my mom and my brother in.  Willy’s resting.  I catch them up.  I regret taking so long to think of them.  Shortly after that, the adrenaline seems to leave my system in a rush and I experience a new kind of dizziness.  Blood tests, monitors, then a CAT scan.  Willy bravely tells me he wants to go alone.  He does a wonderful job.  More waiting.  Lots of waiting.  I remember that I haven’t really slept in over thirty-six hours.  It hits me like a rock slide.  We hadn’t had dinner either.  It’s now well past midnight.  This started around nine, I think.  Maybe eight.  More waiting.  My brother leaves to get us some dinner—but not Willy, because he’s asleep and because he’s not supposed to eat until they’re 100% sure he’s stable.  The doctor comes and tells us that there are no physical reasons for the seizure.  He calls it a non-epileptic seizure, but tells me I need to take Willy to a neurologist for further testing when we get back home.  He’s going to be okay, he can go back to the cabin tonight, but we’ll have to take things slowly, make sure he eats, drinks, and sleeps enough.  It’s almost time to go.  My brother comes back with food.  It’s not very good, but we eat.  It’s a toss-up as to whether the food makes us feel better or worse.  There’s more waiting and I’m very tired, even after chewing down some roasted espresso beans.  The caffeine rolls off of me and sleeps sings its seductive song in my ear, but I have to ignore it for a little while longer—another hour at least.

When it’s time to go, Willy walks out by himself.  My hand hovers near his arm for a while, but then he moves off on his own when he sees the Jeep before we do.  We drink water as soon as we’re in the cabin.  We sleep in the bedroom together.  My brother sleeps on the air mattress.  My mom sleeps on the couch.

In the morning, everyone is awake before I am.  I drink down a glass of water right away, before I do anything else.  Good.  Willy remembers the ride in the ambulance, he remembers the hospital, but he doesn’t remember the seizure.  The loft is off limits.  At first, he complains.  But then, later, I show him the light that flickers in my brother’s bedroom if you turn it too far.  I explain that his brain is like the light and that a seizure is like the light flickering.  He seems to understand, well enough.  Later, the next day, we talk about maybe going up in the loft, during the day.  He even talks about maybe sleeping there, if it’s okay with me.  We’re never quite that brave.  We never make it back up the loft.

Each moment he’s out of my sight I worry:  What if he has another seizure and I’m not there to hold him?  But life goes on.  Soon, we’ll have the EEG.  Soon, we’ll have some sort of answers.  I hope.

Grand Mal—Part 1

  • Posted on July 2, 2012 at 8:00 AM

Like I said, on the first night of our vacation we had an unexpected adventure, quite unlike anything that we wanted.  When we finally got to my brother’s cabin, Willy needed a nap.  That was fine.  Then, he got up, spent some time with us, ate a little, and wanted to go back up to sleep.  My brother had four places for sleeping.  One was his own rather large bed.  One was an inflatable, queen-size mattress he’d gotten for his up-coming camping/cross-country adventure.  One was a large couch.  The last was a loft with a mattress on the floor.  We’d intended to have my mom sleep in the bedroom.  My brother and I would choose between the couch and the air mattress.  Willy would get the loft, which is a “room” that is very close to the attic.  It has a ceiling, but the ceiling is so low that an adult can’t even sit up straight, let alone stand.  Willy loved the space, and he loved climbing the ladder made out of tree limbs to get up there.  He loved peeking out between the tree-limb railing to look down on everything going on below.  At least, he did that first day.

I tried to enjoy it with him.  I climbed up there after his nap, looking down on the beautifully-detailed rustic cabin below.  But the loft was especially hot and heights can make me dizzy.  It took me several minutes to figure out how to get down without falling, and in the end my brother had to place my feet on the rungs and provide a guiding hand as I climbed down backwards into the nothing of the wide open space beyond the ladder.  I hadn’t intended to go back up in the loft at all—far too scary for me!  But that’s where Willy went to sleep for the night.

Willy had been sleeping up there for awhile.  By then my head was throbbing with the worst headache I ever remember having—worse than any migraine, but probably not worse than the headaches I had after smashing my poor skull into the pavement and giving myself a concussion, though I can’t remember that so I don’t know for sure.  I felt dizzy and sick to my stomach and had just told my brother that I would need to go to the emergency room if it got any worse.  As it was, the pain and disorientation were at the very edge of my tolerance.  I’d taken over-the-counter medication, but I’d thrown it right back up after tilting my head.  I was sitting on the big, soft chair next to the couch.  My head was directed straight at the loft, though my eyes weren’t quite focusing.  I was trying very hard not to move.  It helped, a little.  I was trying the techniques that worked for sinus headaches, because it wasn’t a migraine, despite the severity of the pain.  I wasn’t extra sensitive to sound or light, like with a migraine.  I just hurt, a lot, and I was dizzy and disoriented and sick to my stomach, and I hurt A LOT.  I closed my eyes, willing the pain and sickness away.  This was not how I wanted to spend my vacation!

I heard…something.  Not a sound.  I don’t remember a sound.  But something got my attention.  As a spiritual person, I credit God for that.  I opened my eyes.  I saw Willy’s foot kicking at the railing.  I remember tilting my head, wondering if maybe he was trying to kick at an insect or something to get it off of him.  For a moment, a brief second, maybe two, I regretted the motion, but then my mind made a leap.  I was up off the chair, climbing the ladder, screaming, “Willy, Willy…Willy…Willy!”  I could hear motion behind me and down the hall: my brother coming in from the porch and my mom hurrying to get out of the bathroom.  Everything else faded as I reached the top of the ladder.

One of Willy’s shoulders, his neck, and his head were all off the mattress, but not quite touching the floor.  His whole body shook.  Jerky, uncontrolled motions that reminded me of the electrocutions I’d only seen in movies and on television.  White foam bubbled up between his lips.  His eyelids fluttered, revealing the color of his eyes rolling up, and then showing only red-veined whiteness between the slits of his lids.  I don’t remember climbing the rest of the way up the ladder.  I just remember being there:  holding Willy’s shoulders so he wouldn’t bang his head, helping him roll onto his side, praying wordlessly for it to stop.

I knew what a grand mal seizure was.  I’d read about them.  I’d even written about them.  I’d seen them for myself.  But it was always somebody else, never my own child.  Somewhere in the back of my mind, the rational part, I was identifying the seizure, cataloging the symptoms, noting everything I would have to report to the doctor, queuing the words I would need to communicate this experience to others, recognizing the implications of a first seizure, noting the escalating symptoms (fugue episodes) that had preceded this, and planning how to get my son down out of this loft and to a hospital, even wondering how our health insurance would work out of state.  Most of my mind, however, was working on a different level—rather not working much at all.  I kept calling to him.  “Willy…Willy…Willy!”  But he couldn’t respond.

My brother was there.  “Willy’s having a seizure!”  I didn’t go into details.  Does he know what a grand mal is?  Does he know that this changes everything?

My brother had a chronically injured knee, and it had been bothering him.  But he climbed up the ladder, his head peeked over the ledge.  I remember the sound of that inhalation, that dramatic pause as he took in the sight of his beloved nephew seizing in front of his eyes.  Then he was on the phone.  Maybe that happened earlier.  I don’t remember really.  He was on the phone, calling for an ambulance, explaining to the person on the other end what was happening.  “Tell them he’s in a loft!  Tell them we’ll need help getting him down!”  Maybe I didn’t say that until it was over.

The seizure stopped.  Willy’s eyes rolled wildly.  I talked to him, “Willy, I’m here.  You’re okay now.  We’re going to get you some help.  It’s okay.  Willy, can you talk to me?  Can you say something?”  He recognized me.  He was afraid.  But he couldn’t speak.  His arms and legs were like long, heavy spaghetti noodles.  He had no control.  Oh my God, his brain is damaged!!!

I held my son, murmuring to him.  Moments passed.  Minutes probably.  My mom was there.  My brother was there.  The phone, the voice on the other end.  The rational part of my brain reacted in a helpful manner somehow.  I don’t remember.  That other, larger part of my brain was focused entirely on my son as he slowly recovered, slowly regained control of his limbs, slowly got his words back.

The next rational thought I had was seeing a stranger’s head pop up over the ledge, wearing a fireman’s jacket.  There were questions.  I answered them.  I told them we needed to get him down, but he didn’t have enough control to come down safely on his own.  My head throbbed now and the dizziness was there—muted, though, as if at the edge of awareness, as if, with the adrenaline and instinct, I’d managed to push my own hurt to the back of my brain, suppress it, force it’s gnawing claws down just enough so I could function.  But I didn’t trust myself to carry my son down the ladder.

Then, things started to spin.  I felt like I would fall over, like I would vomit, like my head would burst like a melon in the microwave—but I couldn’t let that happen.  There was waiting involved, until Willy had regained enough control to climb down with the help of the professionals.  EMTs.  Tests.  Low oxygen.  Tubing in his nose to give him more oxygen.  He didn’t want it.  He had to have it.  Ambulance.  Hospital.  “You have to go Willy!”  But he didn’t want to.  But he had to.  “This isn’t a choice.”  The EMTs don’t have an ambulance.  It’s on its way.  Helicopter on standby.  They’re going to keep it on standby.  I sway where I stand.  I find myself sitting.  I sway where I sit.  Questions swirl around me.  I answer them.  At least, I think so.  I think I explain about the fugue episodes.  We’re from Wisconsin.  We just arrived.  Altitude sickness.

Then, somewhere in those minutes of confusion, the ambulance arrived.

Vacation Report

  • Posted on June 30, 2012 at 7:00 PM

Well, this post is almost a week late, but I think you’ll understand why—at least by the next post.  You see, the vacation didn’t go quite as planned.  But we did our best to enjoy ourselves anyway.  That’s the short recap.  Here’s the long version.

We left for the airport later than I planned, which worked out just fine.  The drive was easy.  Getting in and checking our bags was easy.  Much to my surprise, there was no waiting.  Then, when we went to put our bags through security, we looked back and the line snaked all through the roped dividers.  We made it just in time to walk right up to the counter.  Lucky!

Getting passed security was almost as easy.  There was a line, but only a few people deep.  Willy and I went through the “old-fashioned” metal detector, because of his disability, instead of being subjected to the new-fangled contraption.  But my mom had to go through the new one.  Still, we made it through without incident.

Then, we found our gate and we waited.  We got there early enough that there was at least one plane departing from our gate before ours.  It was a long wait, but Willy handled it well.  The flight itself was remarkably smooth and on-time—Willy did a wonderful job the whole way there!

We arrived, found our bags with relative ease, got out at the wrong exit, and then made our way to the correct one to be picked up by my brother.  Again, relatively easy.  Considering how many things could have gone wrong, we were very, very lucky.

Denver and Boulder were both incredibly, unseasonably hot—100 degrees + hot.  We left Wisconsin in the 70s, so it was quite a jump.  And my brother’s Jeep does not have air conditioning.  Willy had little patience for the drive around for needful things before we headed up to the cabin.  He was whiny and out of sorts, but that was to be expected.  I didn’t think much of it, because he rarely enjoys shopping under the best of circumstances.

We arrived at the cabin, and Willy didn’t want to do much.  He was tired and that was fine.  It was a big day for him, so we let him take a nap.  Then, he was up for a little while before going right back to bed after eating a cheese sandwich.  We figured that we’d make up for it tomorrow, but that didn’t quite happen.  That is an adventure that deserves its own post—actually, it’s long enough to be broken up into two posts.

The whininess didn’t stop.  Willy missed his house and his family, in that order.  He missed his routine and our efforts to prepare him were inadequate.  He just wanted to wait in the cabin until it was time to go home, though we did take him four-wheeling (riding on rough, mountain trails in the Jeep).  The landscape was dangerously dry, but beautiful and oh-so-steep!  Otherwise, we spent time together and that was pretty much it—not bad, but not quite as adventurous as we had planned.  But, after Friday night (next post, remember), Willy needed us to take it easy.

My brother and I got to take a walk, but there was less in the way of hiking and exploring than we’d planned.  My mom wasn’t up to a lot of that and Willy wasn’t either.  Still, we had fun.  I got to spend some precious time with my brother.  I don’t regret going.  The experience certainly could have been worse.  But it wasn’t quite the adventure we planned, either.

The flight home went relatively smoothly, but Willy really, really wanted to just get there without the in between stuff.  It made for some aggravation on all ends.  The return, however, wasn’t quite so smooth.  Milwaukee’s airport had one baggage claim carousel open (out of five) for three arriving planes, which made finding our bags a hassle in a heavy crowd.  Very unpleasant.  Then, the way home was all under construction, so we had to drive around Milwaukee just to find a way onto the Interstate.  All told, we were over an hour late getting home.  Everyone was in bed and asleep, though Mark did wake up enough to say “welcome home” when I came up to our room and the little boys fluttered their eyes when I kissed them.

Of course, to top things off, some of the places we went four-wheeling are now in flames—like I said, “dangerously dry.”  My brother is safe and sound last I heard.

After all that, though, Willy doesn’t want to go on vacation again “for a long, long time—maybe not then.”

Willy’s Achievement

  • Posted on June 9, 2010 at 9:16 PM

Today was a day worth remembering.  To celebrate the last day of school at his old elementary school, Willy’s teachers made an assembly to honor the kids.  Each of the three classes of fifth graders elected a classmate to one of a variety of awards.  This ceremony would be followed by a slideshow of pictures from over the year.

Mark and I sat in the audience, listening as awards were cited and names were called.  Then, I heard Willy’s name.  His class chose Willy for one of the awards!  Which one?  Friendliest, of course!

Willy holding an award that says: Friendliest Award

Willy holding an award that says: Friendliest Award

Now, after school is all over, Willy took a quick break from his post-5th grade/beginning of summer festivities to give a short interview:

So Willy, how does it feel to win the Friendliest Award?

Great!

Why do you think you won this award from your fellow 5th grade class?

Because I got the most votes.

Why did you get the most votes?

Because they love me!

What do you do that is very friendly?

I pick up stuff when something falls down.  [With a little coaching he added] Like when a pencil falls off of somebody else’s desk.

How does it feel to be all done with your elementary school?

Feels great!

A little sad?

Mm-mm [no]

That’s all folks.  Off he goes…His next challenge, mastering the art of making videos with a digital camera!  In the meantime, I’m going to miss Roosevelt.  It’s a great school with a lot of great “cast members” who truly believe that all kids are worth teaching!