A Handful of Monarchs

The waiting. When Gerry and I first began dating it was five months before I would meet Willi.

It was summer. I was driving down Chicago Avenue with my mother, I was teaching then and househunting. My cell phone rang and it was Gerry asking if I wanted to have dinner not just with him but with Willi.

I remember how nervous I was. Gerry had asked me to get him some milk, place it on the little tray where he was sitting. He was 3 1/2. I took the glass and placed with a smile and he made a tiny lunge with a growling sneer like he was a small pocket-sized tiger.

It wouldn’t stay that way long but I do remember that. I remember that I had to build his trust and play with him and show him that I was someone who cared about him. I had, for some inexplicable reason, these giant rubber ducks wearing sailor hats… A girl and one boy… and babies. My brother had seen them in a window in Boston and purchased them for me that Christmas. I don’t know why but one day I took one over to the apartment where they were living and when I drove away I stuck the duck out the window and waved it madly. He laughed and waved at it. Ever after that it would be something that we would do. I would drive away, one arm out of the window of my jeep, flailing a giant rubber duck in a sailor hat.

These times scroll across the surface of my mind: my 33rd birthday we got caught in a thunderstorm and I rolled down the windows of the car and drove through giant puddles pretending it was a roller coaster and it was fun,having him stick his hands out of the window; traveling to my mom’s place in the upper Peninsula of Michigan where he crawled up on my lap in the rocking chair one morning and I sat there barely able to breathe with fear that he would move, so rare was that moment; the few times when he has broken down completely vulnerable in my arms and sobbed, once at about seven and another at 12. He is cut from the same stoic Austrian cloth as his father.

He lay in the hospital bed awake but tired and in one of the down times after stimulation when he just needs to rest. He will still cry out in pain in his legs hurt, if the lukewarm soup feels too hot to his tongue. And it’s not the tiny roar the tiger cub anymore but of a young adolescent male.

I hovered uncertainly at his bedside and asked him if I could touch him. That I didn’t want to bother him. He sort of half smirked. I put my hand on his arm and told him how much I loved him.

It occurred to me that we are starting all over as if someone had turned back the clock 11 years.

The nurses downloaded and printed out something for us called the Rancho los Amigos cognitive recovery scale. It gives us an idea of strategies to use at every stage of his cognitive recovery. There are 10 levels number one being no response and number 10 being purposeful, appropriate: modified independent.

Right now our son is somewhere between levels four and five it seems– moving from the “confused and agitated” to the “confused, inappropriate and non-agitated”

Imagine your spirited 14-year-old on their worst day when they can’t wake up and they don’t want to talk to you and are agitated. Now amplify it. Even before his injury he might, in the moment of frustration, bark out a cry of anger. He goes to that place quite a lot now. If there’s pain in his legs at night, if his legs are uncomfortable in the wheelchair. He talks too of course but there’s a lot of ordering around that can be difficult for the person on the receiving end. You remind yourself that this is the result of the brain injury and that it is temporary.

The most frustrating part about a traumatic brain injury is that no one can tell you what the end of the road looks like. No one can tell you how long you’re going to be on the road or what the signposts might look like. I did some Internet research for the first time last night but it was too difficult. I understand why now, standing in the trauma center that very first night, shaking like a leaf, the young trauma nurse with the door swung out behind her turned to me and said “but there are always the miracles ”

My mind raced around and around, what does she mean? This is just a stupid skateboarding accident on the suburban street, what does she mean?

I’ve seen half a dozen monarchs in the last week after seeing none at all. A goldfinch in my front garden. It all seems so beautiful and incongruous. I think of the impossible migration of the Monarch. The trees in Michoacan heavy, draped with the fluttering wings of millions of butterflies. Those fragile wings that can be marred by a fingertip can travel thousands of miles..

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Awakening

I was driving to the hospital on my nightly food delivery with Zoe when Gerry texted. He is awake.

I thought he meant conscious had no idea that he actually meant that our Willi was all there — skinny and sweaty but acting more as if he had just come out of a bout with influenza or something.

Harassing his sisters, joking with his best friend on the phone, reading his cards and asking when he was going to get out of here.

His father and I sat in the Ronald McDonald room. It’s like being Italian restaurant on a movie set with the white checked tablecloths. I have brought an Austrian favorite that his mother always makes. We sat and looked with one another; I had tears in my eyes, my eyes wide. Just stunned. And for the first time since I have known him –other than tearing up or a few stifled small cries — his face just crumpled as he sat stock still and he sobbed. In relief.

Willi’s night was difficult. He tosses and turns, is agitated and oppositional. Something that I guess is common with the overstimulation of traumatic brain injury. They’re managing the pain with oxycodone and Valium and Benadryl.

today he moves to inpatient rehab.

None of the nurses on the ICU could believe it. The doctors couldn’t believe it. We saw a glimpse of what people usually only see only months on

He opened his eyes and looked at me. He sort of smirked. Made a goofy face. I asked if I could hold his hand and he jokingly looked disgusted and then I asked if I could kiss it and I did — I brought his hand up to my lips and kissed it . Told him how much I love him.

Gerry said it best on the CaringBridge this morning. We understand now that it’s a marathon but we had no idea we’d be running the marathon on the roller coaster..

The Zoo, Windmils and Tulips

I woke up today and felt like there was elephant sitting on my chest. Elephant seems too gentle… Make it a tiger that has lived mostly in captivity and you think it’s probably tame but you don’t know.

I took Zoe to the zoo yesterday. Trying to make things as normal as I can. We watched a show in American kestrel, she watched a beaver amble from one cage to another. She learned about what it means to be a keystone species. She raised her hand furiously when they asked what other animals eat bugs shouted out “bats ” as only a child who seen a bat flying around her northern Minnesota cabin says. She made such quick friends on the playground asking someone to be her friend, grabbing their hand and running off with them. She has made such incredible strides. And what I told her quietly that it was time to go, that we had things to do before going to the hospital… It wasn’t a tantrum as it can often be, but a quiet acquiescing.

I track her brother through the CaringBridge like most of you and through my discussions with her father and my brief visits in the evening. My head feels like it’s floating. I try to feel my feet on the ground. I remember when my grandmother was ill and I was in college my favorite professor was so kind to me and she said in times like this you just have to feel your body. Feel yourself in the chair. Feel your feet on the ground.

It makes no sense at all. Your mind tries to wander down all the possible paths that life could take. Right now we are just in crisis mode.

I know you know about my best friend Alicia who died last year. I have another best friend who I met the following year when we were in the 8th grade. She’s phenomenally strong. A single mother of five kids her second eldest child, a daughter, was born with a rare genetic abnormality. Her daughter has exceeded every expectation that the doctors had of her. I remember seeing a video my friend posted of her daughter’s Christmas concert biking down the aisles, waving, truly amazing. My friend just shared with me that the genetic counselors had told her that this child would bring them no joy.

The same friend shared an article with me a few days ago called welcome to Holland. The narrative device goes something like this: you plan to trip to Paris you have all the guidebooks have your itinerary you get on the plane and instead of Paris it drops you off in Holland. It isn’t the place you planned to go. But in time you’ll understand that there are beautiful things about Holland. Windmills. Tulips.

There may be windmills and tulips but I cannot see them from here.

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Hospital Garden

We stand in the late summer evening in the hospital garden.

She clambers up on the cement benches, hurries across them, chases her father up and down the meticulously planted groves .

“Be careful “I say which is something I have always said and is something, G says, I say too readily.

My brother was here earlier in the week. I was telling him something while we were driving. He remarked on the deep groove between my eyebrows to which I responded something like “I know I know it could use a shot of Botox” and he said, “no no, you have always had that even when you were tiny. I would take you to the playground just like I took a Z and you would look up at the jungle gym and I would ask if you wanted to climb and you look up at me with that furrowed brow and shake your head silently no”

Z climbs confidently and happily to the top. Surveys her world. Climbs back down and reaches for the tiniest bit of help.

I have been forever calling after my children to be careful. I have seen in every situation dire life-threatening consequences because that is how my brain is wired whether shaped by early life or just by nature.

When Willi was six we went to Florida on vacation to the coast where my father died. We gathered shells and watched the surf. We went to Disney land …world? I get them confused. I remember wandering around the ersatz Nepal in the heat with the undulating crowds of people and the lines. I took a picture of a truck filled with half green oranges. W was most excited by the alligators in the ditches. During our week there we went to an air show. The morning had been heavy with thick clouds and threatening rain. It drizzled as we were able to climb in and out of the grounded planes. As the sun broke through the word rippled through the meager crowd that planes were going to start the show.

We hadn’t walked very far, Willi between us only six years old, when the Israeli fighter jet flew high into the sky. Dazzling and bold it barrel rolled, swooped up and up came down and down and down and all of us held our collective breath and it crashed in a fiery ball in a Florida orange grove.

Just moments before it began my mind had played out that very scenario because that is what my mind does. I remember my numb brain as we walked the dazzling white Florida concrete. W didn’t seem too bothered by the event, he was more bothered by my being so distraught.

I tried to remember that last night when I gave Zoe over to her father to bring her into Willi’s hospital room. My own heightened emotion, I thought, might inhibit something between them. In the car going home Zoe said “and mama he opened his eyes. He said good night to me. ” And he did. He crooked his finger had her come closer and said good night.

He has said my name only once. He barked it out as more of an exclamation rather than a question. His father was by his bedside and assured him that I was there. I was on the couch behind his father and Willi rolled in my direction head halfway off the bed opened his eyes and directly looked at me and then went back to sleep. Once when we were alone and he stirred I just said I’m here kiddo just go to sleep. Just go to sleep. And he did.

Being a stepmother is about constant calibration. I remember when he was four and had the stomach flu. He has lived in two homes from three or so — splitting his time equally between the two but when you are sick you want your mom. They know exactly what you need. They are the inchoate sense of love and calm. This isn’t to say that we can’t find it in other places but I have always understood that he had a mother, a loving and wonderful devoted mother and that wasn’t necessarily what he needed me to be to him. He needed me to be his Pam. What that meant when he was four is different than what it means at 14. We have still been navigating that territory together. I am often translator between him and his father. I speak the language of emotions more fluently than my husband sometimes. I offer unsolicited advice… About interpersonal relationships, about navigating the social world, about love. All of which is probably profoundly embarrassing.

What I know is that Willi knows he is deeply loved by me. And he’s always known this. Interfamily dynamics are complicated for the world at large to untangle. We bring to it our own personal baggage, our societal baggage — The first day he was in the ICU the information desk wouldn’t release the information as to where I could even find the pediatric ICU unit. “But I am his stepmother” I cried “you don’t understand, my husband is in there and he can’t text me to come out here and give the okay this is a crisis situation” how could the woman sitting there have known that I have known Willi since he was 3 1/2. That he has two loving and devoted families with whom he splits his time. Or the charge nurse who shooed me off the floor with Willi’s mother’s closest friend and sister. She couldn’t have known who I was so I came up to her afterwards and said “you couldn’t possibly have known but I want you to know that I am Willi’s stepmother.”

It isn’t about me and I don’t want this post to make it seem so. Many of you have known me for a long time as I’ve written here and have wondered why I’m not writing as much as I could here. In our stepfamily dynamic even when Willi was little I always thought of it as my role to provide a loving and warm environment for his father and Willi to be together. Dinner cooker, facilitator, target of Nerf bullets and boy humor. My role is to be outraged at their grossness, to put my motherly disdain on their behavior. All a bit tongue-in-cheek. But I am an introvert by nature and that also means I usually think that other people need the kind of space that I do. Sometimes I give too much space and that is always a place I’m negotiating with step parenthood.

This is a new landscape and for now I continue to do what I’ve always done which is hold my family lovingly in my heart and support my boys, and of course now, Zoe.

When I heard about their bedtime exchange my heart simultaneously filled and broke. Because, of course, I wanted to be there in that moment. But it’s possible that had I been there that moment would not have happened.

I have always believed that love is the most powerful force. My mother, in talking about my father, would always say “your father believed that people are more important than things.”

How we love and who we are to one another is the only thing that matters.

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Update

I am out of words today. My brother left yesterday. The house seems very quiet. I put Zoe to bed and then toss and turn to the dog snoring.

So instead of my words I will give you Gerry’s update from the CaringBridge:
Jul 14, 2014 9:17 PM
After the incredible day on Saturday, yesterday and today have been more measured.

Steps completed today

Willi was completely weaned off the Fentanyl today. That infusion pump is off and fully charged for someone else to use.

Another step forward.

We also met with numerous other medical professionals, each with a different role in Willi’s rehabilitation.

The intensivist, a speech therapist, an occupational therapist, a physical therapist, a dietary specialist, the trauma team, the neurosurgeon….

“Prepare for the worst and hope for the best”

His rehabilitation and recovery will almost certainly be a progression of gradually less dramatic milestones measured in weeks and months and more rather than hours and days. See Mary’s update for the details.

The kid has made monumental gains, but much work remains. The future still remains completely unknown.

Next step:

Tonight the doctors will begin preparing to remove the drain and sensor from Willi’s brain. We anticipate the drain and sensor will come out of his head tomorrow.

As of now, Willi’s cerebrospinal fluid is draining externally. Once this stops, he will have to again resorb the CSF on his own. Also, he will no longer have a pressure sensor allowing us to look at a screen or device to measure the pressure in his head. Accordingly, they will do another CT scan later in the day to ensure the CSF is being resorbed rather than expanding the ventricle system in his brain.

Please think good thoughts, people. You are all appreciated more than you will ever know. Thank you.

More updates to follow.

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In G’s Words

For the Record: The Timeline and Time
Jul 14, 2014 9:15 PM
The Timeline

The evening of Monday, July 7, 2014 was entirely normal at the Bosch house. Pam and I collaborated on a quick meal. Willi, Declan and I ate at the kitchen island, Pam puttered around us, and Zoe had snuck off to the den adjacent to the kitchen. After our meal and the typical associated banter that usually got me in trouble with Pam, the boys said they were going down the street to the neighbor’s house.

Mary was at her family cabin on Madeline Island in Wisconsin’s Apostle Islands. She stayed up at the Island with Angela and some friends while Willi drove back with Mark and Willi’s friend after a fun-filled weekend. Willi and his buddy were participating in the Hill-Murray Boys Summer Hockey Camp and Monday morning was their first on-ice practice.

Based on conversations and from Willi’s and my phone logs I pieced together this timeline of Willi’s injury on Monday, July 7, 2014:

After spending time at the neighbor’s house, Declan was called home and Willi decided to go long boarding on his normal route on a path that runs through Central Park and around the lake. He went alone.

8:25 pm: While long boarding Willi makes an outgoing call to a friend lasting 14 minutes through 8:39 pm.

8:40 pm: His friend texted “Did you fall???”

8:45 pm: Willi makes a call to Declan that lasts 2 minutes. He tells Declan he crashed, he’s hurt, and he wants Declan to come help and to bring water.

8:46 pm: While still speaking with Declan he misses a call from the friend he was speaking with at the time of his accident.

8:47 pm: Outgoing call to Declan that lasts 9 seconds. Declan spoke very briefly with his mom and was already leaving his house.

8:49 pm: Outgoing call to Declan that is canceled, presumably because they spot each other on Hamline Avenue, about 1.5 blocks from home.

The boys arrived home shortly thereafter.

We live in a two story house with the driveway, garage and an odd elementary school style courtyard at the same level as the basement. The basement door is almost always the way everyone other than first time visitors come in the house. The main room of the basement is where the vast majority of ‘hanging out’ occurs, usually on the couch facing the TV.

Declan immediately came upstairs to get me, telling me he thought Willi crashed his long board and hurt himself… “like, for real, I think he’s hurt.”

When I got to the basement Willi had already slipped off his Nikes and was sitting on the couch, cap in lap, rubbing his head. He couldn’t tell me what happened. He couldn’t identify anything that hurt. I asked him whether he thought he could slip his shoes on by himself. When he didn’t move right away, I asked him whether he could slip his foot in if I held them open. He reached down and picked up his shoes and stood up.

I immediately yelled up to Pam that I was taking Willi to the hospital and out we went. He vomited in the yard as I backed out the truck. I put him and Declan in the back seat and drove as quickly as I could to our go-to pediatric hospital, Children’s at United. Traffic laws were broken.

9:09 pm: I called Mary from the truck as I drove to the hospital. I told her what was going on, that I couldn’t really see any signs of significant trauma (blood, abrasions, bumps, or swelling), but at a minimum I thought he had a concussion based on his confusion, and that I was concerned. I also told her to wait until I got the report from a doctor whether it warranted an immediate return home from her vacation.

We arrived at Children’s / United Hospital shortly after that, maybe 9:15 pm or 9:20 pm.

Mary and I had two more phone conversations to discuss what was happening to Willi. At 10:02 we spoke again. A decision had to be made since the last ferry off the island leaves at 10:30 pm and the weather was deteriorating. I told her I felt she needed to drive home. I am pretty sure she was already packing.

10:10 pm: I sent this series of three texts to Pam:

– Head injury. ‘Small’ brain bleed. Transferring him to Regions.

– He’s belligerent.

– I’m scared.

We arrived at Gillette via ambulance sometime around 11 pm. Willi immediately underwent a second CT scan. By midnight, based on the findings of the CT scan and his deteriorating neurologic examination, Willi was prepped for surgery. By 12:30 am he was undergoing an emergency decompressive craniectomy.

Time

When you live in a hospital for a week, scared, confused and intensely focused on one thing, you lose your ability to orient yourself to time.

On either day 2 or day 3 we had a very earnest discussion about whether we were at hour 24 or 48 of his initial 72 hours.

Without phone logs, regular meals, sleep, daily rituals, and seeing something called ‘the sun’, time is measured on different scales. Periods where the window shades are lighter or darker. The metallic clunk of the security doors is more or less frequent. There are more or less family members in Willi’s room. I see more or less people in the halls on my way for coffee.

Yes, there are clocks, but they are only markers of the next step, such as ‘the CT scan’ or ‘I’ll relieve you at 2 am’.

I wrote the notes above a couple days ago. Now that we are officially one week into this process, time is starting to be measurable again. Even the kid asked earlier today “what time is it?”

Small steps.

dogfish by Mary Oliver

Dogfish

I wanted
The past to go away, I wanted
To leave it, like another country; I wanted
My life to close, and open
Like a hinge, like a wing, like the part of the song
Where it falls
Down over the rocks: an explosion, a discovery;
I wanted
To hurry into the work of my life; I wanted to know,
Whoever I was, I was

Alive
For a little while.

…mostly, I want to be kind.
And nobody, of course, is kind,
Or mean,
For a simple reason.

And nobody gets out of it, having to
Swim through the fires to stay in
This world.

The wait. The Weight

It was a quiet day yesterday. He slept mostly. They still can’t control his nausea. He still communicating with eyes closed and nods murmurs. He did give his best friend fist bump and his middle finger. It’s little things like that that reassure us.

It’s hard when the day before it seemed come out in a flood of communication. It gave us hope for the miracle. And while this still is a miracle of course it has put us back to that place of not knowing.

I wrote this yesterday last night on Twitter:
Small things. A fist bump, a murmur, an understanding of where he is and why. It’s still so unknown but he said “I love you”: that is joy.

You want the time machine. The miracle. The one in a million fluke. You have no idea at the beginning; not now nor when they were born.

You have the illusion of knowing what their life might hold. A hope. An assumption of what they’ll do or be. I’m forced into mindfulness

Hardcore. This moment is all that matters. We are on a path now and it’s unknown to us with hidden trail markers, talus fields, cliffs.

At 22 my friend and I got lost in the San Juan mountains. Dusk falling. Ill-prepared. Backtracking over trails we hoped were the main ones
I remember him ahead of me, his hands clasped at the back of his head. The silent body language of mounting panic. And I remember the light. His parents flashlight bouncing with the cadence of someone’s steps as they began the long hike back to us. Not lost but walking blind.
***
Something will knock me off my track. My brother after visiting came home and said… Well this is the perfect time because you guys were doing that house remodel and he’s going to have problems with stairs. All of a sudden my mind scrambled furiously… He’s going to have problems with stairs.

A few days ago we were standing in the bathroom and Z looked up at me uncharacteristically quiet and serious. She looked deep into my eyes and asked me if he was going to die. So smart this little one. I said absolutely not. He was like sleeping beauty. He’s getting phenomenal care. It’s just going to be a little while before he can do some things he used to –maybe Christmas I said. Christmas she said its like a bazillion days away.

She visited the hospital yesterday. She held her father’s hand. I saw them framed by the long hallway that has the view of the capital as you’re suspended over a city street. She, her father, and uncle Michael tossed the pink teddy bear between them like a football game.

And then G and I brought her into his room. He sleeping now. There’s no breathing tube, just monitors and IV’s he looks very peaceful. He moved a little. She noted that. She clung to her father very quietly.

Someone, I don’t remember who, said that she understands that there is something big going on here. She wants to be part of it. But this is our life now so she needs to understand to be able to come to the hospital with me.

I had reassured G in our nightly texts that she is okay. She’s holding up. She feels secure and happy if a little confused.

I watched her father hold her next to W’s bed and quietly explained to her each thing that she saw. I looked at the posters plastered all over the wall of his life before this. I looked to his mother who was looking at me, grasping my hand barely holding back tears. She’s okay she said this is okay she said they take our cues from us. And I took a deep breath.

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Small Miracles

Something amazing has happened.

W opened his eyes and has been talking, albeit with some difficulty, which is to be expected. They removed him from the paralytics first and then the breathing tube, they removed the sedation and then you wait.

We have seen him open his eyes to command. Squeeze people’s hands. But yesterday they were waiting for a moment. The moment that maybe he seems lucid and perhaps you can see a bit further down the road. Most days I’m at the hospital for three or four hours in the middle of the day. I try to keep so Zoe’s life ticking along as normally as it can here. She’s been a superhero — marching off with my brother, someone she’s really only met a few times — with smiles and confidence.

Yesterday I brought a new batch of clean clothes to the hospital, sat by W as his hands moved to the drain at his head. He seemed as if in a light dream. The place between sleeping and waking. He’d been very sick all morning. I’d convinced his father to walk with me to grab a bite. A moment away.

When we came back his mother and everyone was smiling. The room abuzz. He’d been communicating with her. He knew now where he was, what had happened. G was crestfallen having missed it. He stood over the bed pressed his face nearly nose to nose with him and said ” I love you boy” and he opened his eyes and said “I love you too”

The CT shows as it did before that his brain has damage from the fall. We don’t know what the next bend in the road looks like but as I told G he said I love you — he knows you’re there, he knows you love him. He feels safe. A very good day.

I was driving home the other day and where I had felt, at times, this dangerous void beneath me … Especially those first 24 hours … After that I felt this wave, this cushion, this enfoldment of love. Your wishes. Your energy. Your prayers. I can’t explain it. I spoke aloud to my best friend missing her so much and I felt her, simply felt her right there in the car with me.

Last night my other oldest friend– who knew Ali — told me she had prayed so hard to Ali to come to me, before I’d mentioned to her my drive home. She was there I said. She is here. And we both cried.

I could feel the same sensation I had when she comforted me that first drug induced haze post c-section. I could almost hear the purring sound she’d make at the back of her throat. Her presence, there is no other way to explain it, was palpable.

A miracle. Every bit of it. There’s an unseen road ahead. We’re just at the very beginning. He has damage to the frontal and parietal lobe. His doctors said to expect weakness on his right side, aphasia, language processing difficulties and maybe sequencing difficulties, challenges to impulse control — all these things governed by the area of his brain most affected.

W was alone for a point with his dad last night. He opened his eyes and asked his dad if he had his phone and if he could have it.

That part made me laugh through my tears.

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