JFBelieve – Going Home: That Girl Lived

Breaking down Julia’s Hospital room entailed packing up mementos from Christmas, New Year’s, Valentine’s Day and St. Patrick’s Day. After 109 days, she was released 1 day before Easter.

Since my last post, people have queried me about Julia’s brain functioning, which, nearly 4 months post-trauma, is slogging woefully behind her physical progress. Specifically, how can Julia beat 3 highly educated opponents in Scrabble, then not remember that she just ate lunch? The explanation has to do with the spot on her brain where she hit her head the hardest.

We were told in the hospital, the first few weeks, that the area of brain that was injured effects cognition, memory and personality. Dear God, please take anything but her personality. I don’t need a do-over on that one and probably couldn’t replicate it if I tried. So far, all has come back except memory. I loved when I heard that her close friend George was roiled by my last blog post because he didn’t see any of the deficits I mentioned. In the words of a faculty member who knows him well, “George thinks he can just pluck Julia out of rehab and stick her in St. Joe’s campus and she’d be exactly the same!” He wants to see her as the same. Which, if you play games or spend time with her, is easy to think. I do it all the time. George’s stalwart, defensive faith in her stings my eyes.

Julia, for now, is not the same. Her thinking and analytical skills are developmentally on point. Her vocabulary and word-retrieval are well above average. Her wit, I dare say, is sharper. But, because the bruise on her brain that’s occluding memory retrieval is, as yet, unhealed, she is not laying down new memories. Or, if she is, the mechanism that retrieves them is not working. As her Speech Therapist puts it, “There’s a disruption in the retrieval system (of memories).” When I ask this therapist about chances of recovery, she simply says, “We would have liked to have seen progress by now. Actually, much sooner than now.”

I’ve learned that no one will give a straight answer on prognosis. Not only because they can’t, scientifically, but because no one wants to tread on a mother’s hope. Because of this, I’ve learned to ask my questions differently. “In your experience, have you ever seen a patient like Julia, given her deficits at this stage in the game, recover memory?” Because I’ve litigated them into the corner, their helpless, honest answer is No. I have never seen someone like Julia recover her memory.

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The last week before discharge, Julia’s dad and brother were on vacation. I can’t tell you how zen and powerful it felt, even though I doubled my hours, to be there mostly alone with her (thank you Lisa and Colin for the breaks). In those 7 days, I feel like I converted 10 lbs of fat into muscle. God’s message to me was loud and clear: “You’ve got this, Dyan.”

As restated throughout this blog, Julia was raised on the belief that everything that’s happening to us, is happening for us. I had to learn that much later in life. Julia was fed it directly from childhood.

Since she was young, I’ve told Julia she was born to write. (I never knew what I was born to do, and still don’t. Besides raise a child again from scratch at 20. With someone who doesn’t like me very much ; )) Not because of her language skills, per se, but because she has a writer’s way of looking at the world. She was very spiritual from an early age, especially when it came to nature. She was constantly curious about Why God did this, Why God did that. I’d remove dead bugs, rocks and leaves from her pockets in the laundry room… (Don’t you want an American Girl doll?) It always reminded me of that Albert Einstein poster where he’s making that outlandish face, his quote below reading: “I’m interested in God’s thought. The rest are details.” God is a writer, too, I’d tell her. God wrote the world. When you tap into your own creativity, you tap into the Creator’s, as well, I’d tell her. That’s why it feels so good. We’re all walking around connected – to one another and to nature – but don’t know it. That’s why it feels so bad.

It actually took me seeing things through her lens to get the connection between spirituality and nature. Alice Walker wrote a book that later became a movie called, The Color Purple. The story, at its essence, was about appreciating the beauty in life in the face of crushing pain. The message I got was that acknowledging the beauty in the world is a way of worshiping God. (“I think it pisses God off if you pass the color purple in a field somewhere and don’t notice it.”) My friend Lauren put it aptly way back when, when we saw it, when she pointed out, “Giving thanks for all that is, is a form of prayer.” This is one thing I didn’t have to teach Julia thea way I had to teach myself. She came with it built in like software on a computer. Reinforcing it in her simply reinforced it in myself.

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How To Survive a Tragedy (Lessons from the road)

I. Serenity Prayer (Prayer of St. Francis)

God grant me the serenity to accept the things I can not change. the courage to change the things I can, and the wisdom to know the difference.

This is not a plaque of pious platitudes in your kitchen. This is a working blueprint for moving through tragedy.

If you haven’t spoken to a family member in 10 years, that’s a tragedy. If you are in a dead-end job that doesn’t engage any part of you that makes you feel alive, that’s a tragedy. If you’re stuck in a loveless marriage, hoping to teach your kids about family values, while you’re teaching them that loving always involves trauma, that’s a tragedy. One which they will go on to repeat unless you teach them to honor themselves by expecting better.

The prayer is in 3 parts. Approach it from the last part first: The wisdom to know the difference. Get out a legal pad and draw 2 columns: Things I Can Control and Things I can’t. Find a home for everything that’s bothering you underneath one of them.

For the things you can control, pray for the courage to do so. Think prayerfully about how to bring about change, knowing you can’t control others. But act by all means, on what you can control in yourself. Even if you aren’t convinced your actions make a difference. They almost always do for others. They always do for you. I heard on the radio recently that 70% of Americans polled say the best part of their day is when they are eating. If that resonates with you, you are not using the Serenity Prayer.

We’re called to something higher. Which entails getting more out of our moments of joy as well as our moments of suffering. In the West, we aren’t as good at the latter as our Eastern siblings. Find the teaching moments in your sorrow. Find the thing that the thing that’s taking from you, is giving you. Find the muscles that the thing that’s weakening you is building in you. Find the color purple in a field of weeds and notice it. And throw up a prayer of thanksgiving to God while you are, even if through tears of pain and gritted teeth.

This is what my friend Dan’s death at the age of 27 taught me. The ability to hold the good and the bad at once. And above all, learn from it all! Take a breath and see yourself as higher! Because both are always happening at the same time. This is the developmental task of adulthood. Find the light and the dark that are co-occurring and hold them both together. One doesn’t obliterate the other. We’re used to thinking in categories. The challenge is to respect and make room for them both at the same time. The Yin and the Yang. In our Western world of rugged individualism, accepting life on life’s terms is the hardest. Sometimes the best you can do is the next right thing. Drop the perfectionism. Good is good enough.

If you haven’t experienced this task yet, personally, you don’t know what I’m talking about and are probably skimming over this paragraph. Gee, she seemed to be so on point with everything else… If you have experienced what I’m talking about, no explanation is necessary.

For the things in your column that you can’t control, pray for the serenity to accept them. Which means, stop throwing energy behind them except acceptance. Just stop. Extremely difficult, but extremely important. And pray. Which is not nothing. Praying is a real thing. And has real consequences. If I was the age of some of you who are reading this, I’d be rolling my eyes. If I could talk to my younger self, like Red did, fictionally, in The Shawshank Redemption, I’d say, Just wait, Dyan… you’ll see.

II. Be Careful of the Messages Your Actions are Sending

If after 60 seconds of watching Julia try to put on a sock, I acquiesce and help her, is she reading in my gesture, “My mom wants to help me because she loves me.”? Or, “My mom thinks I can’t do it.”

This reminds me of what I learned from the kids I used to work with who believed their fathers didn’t love them because they were never home. When I suggest the possibility that, given the cultural morees and expectations of men at the time, that in the dad’s mind, the best way of showing his love for them was TO provide, they look at me like I’ve suggested 2+2=6. Another pacifying adult who doesn’t get it. My dad didn’t love me, no matter what psycho babble spin you put on it. If my father loved me, they think, he would have been there, would have tossed a ball. He would have enjoyed my company. He would have recognized when I walked into a room. Kids, like adults, are all the same. At our most primal level, we all want to know we matter. Find ways to convey to the people who matter to you – in their language – that they do.

III. Consider that God is trying to Develop Something Underdeveloped in you.

Case in point is Julia’s dad, Pat. Much of the consternation in our marriage (besides a million failings of mine, I’m sure) revolved around his vocation. Simply put, I begged him to teach and coach. I could see clearly, early on, that these were his salient strengths. Because, I’m surmising, he wanted to provide for his family the way his father did and brothers were doing, he followed a more lucrative career path. One that took from him, rather than gave to him. And when something is taking from you, you rely on the reserves and resources that are there for you… including those you come home to at night.

Now, just as I was getting my last child into college and eagerly awaiting disconnecting myself from our co-parenting struggles writ large, here he is coming into his largess. And benefiting my daughter in the process. The expression of my mother’s – the crooked finger of God – comes to mind.

For me, the underdeveloped personal skill this situation has developed is patience. I have close to zero executive functioning skills (time mgmnt, organization, measure-twice-cut-once, etc). When I used to have to develop such things in the kids I worked with, it was tedium-hell. Put your rain hood up, zip your back pack, put on your goloshes, where’s your umbrella? Ughh. I’m a big picture gal who averts details as much as possible.

Now, my girl’s progress depends on as much routinization and predictable repetition of details as possible, because she’s not laying down memories any other way. What are the chances? If you know me personally, the expression Barge in where angels fear to tread may come to mind. Most people don’t need to learn that barreling around the corners of a Brain Injury Unit is not a good idea. If you’ve been a whirling dervish your whole life, it takes something extremely significant to change your stripes.

I watch myself now slow my roll. I notice how much calmer I can be, I have to be, and how much more I notice and make room for others in the spaces around me. I will always be excitable. But impulsive at the expense of others I am no longer. Or at least to a lesser degree. Thank you, Julia.

For Julia herself, her budding creativity with writing was always surprising. My brother Rob, who is an author, told me when I was younger, it isn’t enough to have writing skills to be a writer, you must have something to write about. If you love music, you know the best R & B singers actually have real blues to sing about. Most of the early hits of the pop culture phenom Taylor Swift (Julia will hate that I ref’d her, but it serves…) were penned, sitting in her room, alone, during football games or dances from which she was alienated and afraid to participate. This is what she let, out of desperation, connect her to the source of all creativity, which is God. Where the “muse” is. Which, then, allowed us to connect to her. This is an example of someone holding the dark as well as the light and spinning it into gold.

I say to Julia directly, over and over, “You were born to be an author, Honey, and here God served up the material for you on a platter! Wasn’t that nice?” When she laughs, I add, “Your muse showed up in a fast SUV.” Finding meaning through trauma is imperative to surviving it.

The other day, we were in the bathroom, when I recounted this familiar repartee (for the 1st time to her) and she laughed particularly hard. “My muse showed up in a Fast SUV!” Because the way she repeats it makes it sound like a country song, we’re both soon in hysterics, robbing me of the ability to release the diaper tabs properly. “I’m sorry you have to do this.” she sobers me up. “Thank you for always being here.” I repeat for the gazillionth time, “There is no place I’d rather be.” This elicits her thank you, on cue, for me “seeing it that way”. Which elicits in me a “Thank you for appreciating me seeing it that way.” Which cues her gratitude for me making a compliment for her out of something I was doing, as she pauses to get behind the ‘thank you for thanking me for thanking you for…’ She stops to process whether she has the cognitions to articulate the next round of thanks.

As she thinks, competitively, how to bat back a verbal tennis ball, I’m reminded that we have been doing this our whole lives. Thanking each other, layer upon layer. When I hear her say to visitors who come in and ask how she is, “Better now that you’re here!” I recognize that this is the retort she’s heard from me her whole life in regard to her. Funny the things that remain emblazoned on your brain no matter how hard you hit your head on a car windshield and then again on an unforgiving pavement.

IV. Develop your Support System

I’ve heard it said that the quality of one’s life is directly equivalent to the quality of one’s relationships. If that’s true, nowhere is it more apparent than in a rehab hospital. We have heard, ad nauseam, from staff, that Julia is 10 steps ahead of the game because of the support she has. Nevermind that both her dad and I are from big, loving families who have circled the wagons around us, in addition, both her dad and I stopped working the night she was struck. She has been at the epicenter of our lazer-focus since. We’re told there’s no telling how to quantify the benefits of that. Where healing is concerned, often love does more, in a practical way, than medicine.

I look at her hallmates languishing in the hallways, staring into space, thinking about what, God only knows… I wonder what they would be like if they were flanked by 2 parents much of most days. Being there to be their memory in awkward conversational moments. To have someone whispering in their ear all day, bulldozing over the other parent to steer the wheelchair, making dumb jokes all day at the expense of the one who wanted to push the wheel chair. (lol) What would their progress be like if they had that kind of support and stimulation, literally fighting over them, for over 100 days in a row?

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A Word About Discipline

It’s a delicate balance to be honest in this blog, the essential and hardest task of any writer. How do I weigh protecting interested parties, while also being an authentic witness for those who have, or will, go through something similar? This is not just a story about braving something. This is a story about braving something under trying circumstances; a wholly different thing.

The strong belief I’ve held about protecting the image of my co-parent to my children, to which I have been devoted, has been tested recently. Because I know and have seen first hand, as a social worker, the results of anything other, I have endeavored to paint the kids’ dad in the best light. Unless they’re lying to protect him, Pat has done the same. This situation has tested this commitment on a whole new level. I’m proud of our fortitude in keeping our conflicts, for the most part, away from our kids.

Anyone who knows anything about child development knows, if you want to get in the express lane to screw up your kids, vilify the other parent in front of them. Kids are made up of half of one parent, half of the other. Whether you are together or not, bank on this: When you degrade the other parent to your children, you degrade them. Are there times I want to say to Julia’s dad, “If you’re going to talk to me like that, you really should give me a chew toy”? Of course! But because my daughter is there, I say, Can I get you something from the cafeteria, instead. This is being an adult. This is honoring your vows about the respect part even if you couldn’t keep the rest of them. For better or worse. This is being a good parent.

Whether you make all their swim meets or volunteer on the Mother’s Guild or not, if you actively put down the other parent in front of them, to assuage your own hurt, even if you think it is for their protection, you erase all of that. It is to their direct detriment. And you exact wounds upon them that will interfere in their future relationships long after you’re gone. Any friend, worth their salt, listening to your harangue about how you schooled your kids on their other parent’s deficits, is not feeling badly for you; they are feeling badly for your children. Trust me.

 

 

It’s a strange experience to help someone write thank you notes for things they can’t remember. I tell her that her soul has formed relationships with these staff members that her brain does not recall, which makes the relationships no less real. I explain to her that the patients on her unit are not happy about where they have wound up. And that they take out their frustrations on the people who are trying to help them.

By contrast, here is Ms. Thank you / I’m sorry / You guys work so hard. I tell her she is the reason most of them went into this field. That I will be next to her at discharge explaining the tears that fall. Because she has inspired them in their jobs to have more patience with the next patient. I tell her what she’s given is a gift beyond measure. That that’s why staff who work during the week are offering to come in on a Saturday to say good-bye. While I’m off on my esoteric high about this, Julia keeps it real with, “I’m just glad I was polite.”

A Note To Our Families

It isn’t easy when someone treats someone you love badly and someone else you love beautifully. This is something my siblings know much about. My sisters and a few select friends are owed a great deal of credit for being able to hold the space for me, to express my frustrations with Pat, without them, themselves, turning against him. Secretly, some part of me wants them to, of course. I’m only human. But their eye is on the prize of what’s best for Julia. And I love them for that. It takes a lot of restraint and integrity. Especially my 3 sisters, as protective as they are, me being the youngest. They do it for Julia. She reaps the dividends of their commitment to a higher way. And it frees me up to vent away (which is necessary for my emotional health). Because I can always count on them to greet Pat with a hug and open arms. My 3 brothers will always shake Pat’s hand and look him in the eye. Because that’s how we roll. I respect them for that. The Sopranos, we are not.

I am equally impressed by my in-law siblings. When Pat’s brothers, Rich, Matt and Charles visit, those are the best days. Sincerely. For all of us. His sister Norine, facing her own health crisis elegantly, turns Julia’s hospital room into the Jimmy Fallon show. I watch Julia laugh… then watch me laugh… then laugh harder. This is what she has always wanted. I couldn’t give it to her when she was 8, or 10, or 12. But I can give it to her now. When I dare say she needs it the most. And for that, my in-law siblings are enshrined upon my heart. When they say, What more can I do?, I always think to myself, You’ve already done more for her healing than you can imagine.

3 young ladies I’m particularly impressed with are my nieces, Alyssa, Jeannie and Elise. Not only has their devotion to Julia been demonstrated these 109 days, it’s also the way they’ve shown up for her that gives her a spark that is beautiful to behold.

Moreover, I have seen the deep bond they have with their own mothers, which has been touching to me, as it reminds me of mine with Julia.

Alyssa has her Mother’s fortitude. Her determination to take things in hand and simply make them happen is so my sister, Maureen. Nevermind the fact that she’s told her older aunt, on occasion, to blunt and buffer some of my more direct language in my posts! She and Julia enjoyed a singular connection, old souls (and Vegans) they are both.

Jeannie has her mother’s caretaking and nurturing. But in a bolder, take-no-prisoners way. She won’t hesitate to charge in when something/one she loves is threatened. Step out of the way if Jeannie is on a mission. Be grateful if you’re on her good side. You’re in good hands.

Elise has her mother’s heart. She is more watchful and patient, stepping humbly out of the way, not seeking attention, less interested in credit than she is in the value of giving itself. She has a quiet, soulful, abiding presence. Her gentleness stings my eyes because it reminds me so much of her cousin.

I’ve indulged myself in hugging the stuffing out of these young ladies in a way I can’t yet with my daughter.

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HARD CONVERSATIONS

3 days before discharge, the Neuro-Psychologist, a smart, seasoned, pragmatist, who is the head honcho in terms of Julia’s cognitive rehab, sidled up next to me on my perch where I watch her physical therapy. She recounted the progress Julia has, and has not, made. A lot of small talk culminated in the following…

“Is the girl, who left that dorm room that night, ever coming back?”

“No.”

“Is she ever going back to college?”

“No.”

“Will she ever be able to live independently?’

“No, probably not.”

I wrestled with whether to share that publicly or not. Mostly because I don’t want those limitations taking root in your mind. I respect her for her candor. That is her job.

Strangely, the way it landed on me, was less depressing as it was motivating. It’s not to say I dismissed what she said. It’s just to say I didn’t believe her! Which I didn’t fully embrace until I relayed this to her writing teacher from SJU, Dr. Spinner, who responded, “Did you believe her?” The question, somehow, released me to have the choice! (Hello… Ms. The-Last-of-Human-Freedoms-is-the-Ability-to-Choose-Our-Attitude-in-Any-Situation!) I forgot! It magically released me to be as unbelieving as I was. Thank you, Jenny, for helping me choose my attitude rather than accepting what was dictated.

I called my friend Laura, the widow of our friend Dan who died at 27, who I frequently reference (Being part of his journey prepared me for this journey.) Dan was born a hemophiliac in a time before they made blood clean. He contracted HIV from blood transfusions our senior year at BC. The very few of us who knew what he was battling, made the choice to believe, full-force, that he would defy the odds and live long enough for an effective drug to be discovered to save his life. Less than a year before those drugs were FDA approved, Dan’s time ran out. I wouldn’t have changed a thing about our approach, though, and the attitude we chose. I think it extended his life and made his last years richer. It surely had that effect on ours.

I told Laura what the Neuro Psyche said. I asked her plainly if it was reasonable not to believe her. She said, Yes, and that she would not believe her with me. Thank you, Laura.

When I hung up the phone, an image came to my mind, of a witness to the accident, whom I met at the arraignment. A simple man, he told me that when the ADA called to ask him to appear on behalf of JFB, his response was, “That girl lived?” I loved that he had the audacity to say that to me. After he knew I’d just listened to grueling details of the state in which the police found Julia that night.

I loved how he took off from his job at Chilies and had to borrow my phone to get a ride back. He’s couch surfing at friends with a phone that’s been shut off for non-payment. But here he is, downtown, on Julia’s behalf, to do the right thing. And I loved that he was enamored that Julia went to St. Joes. “That’s a good school, right? Damn, all that potential…” I told him we don’t get many opportunities in the average week to contribute as much as he had, to someone else’s life, just by showing up. I laughed when I relayed this story to my ex-bf John and his response was, “Can we pay his phone bill?”

When I think of this recent forecast that Julia will never fully recover, I say to myself, she wasn’t necessarily supposed to live either. But she did. There’s a reason for that. It’s not for me to know. It is for me to trust. Trust in the loving Hand that’s behind all this. For her, for me, for her dad, and even for you. We’re all connected.

That girl lived. Thanks in large part to the people who have held her in their hearts and prayed for her, including yourself. And the exciting thing is, she’s about to do much more… That girl lived for a reason.

JFBelieve – One Foot In Front of the Other

 

JFBelieve: Rehab Days

Rehab hospitals are filled with people who have lived through something they shouldn’t have.

I heard that statement 25 years ago by my friend, Claire, who was going into the field.  I remembered it because I thought it was poignant.   And that I hoped that didn’t happen to me.

Since the last time I posted, Julia’s stitches in her head have been removed, the trach in her throat has been removed, she has been taken off the 5x/day stomach feeds and been moved to soft foods, then to solid foods.  She’s been transferred to a wheel chair that she can manipulate herself.  She is talking more.  Her legs and arms are getting stronger.  Her voice is getting stronger.  The greatest sign of recovery is the  positivity and optimism that are coming through.  She’s making jokes.  And getting them.  She smiles a lot.

While Julia was beginning to wake from her coma at Jeff, we were told to prepare for a negative shift in personality.  Expect that, when they wake up, they are frustrated and resentful, we were told.  It’s natural… just wait.

We’re still waiting.

Tonight, at dinner, over mush, she said, “Can I cover this?”

“Cover what?” I asked.

“Like can i help pay for it?”

I can barely look at it and she wants to pay for it.

Julia is very concerned about all the hands that are caring for her and thanks them constantly.  The other day she looked the 2 aides who were changing her dead in the face and said, “Wow.  You guys really work hard.”  The aides just looked at each other and started laughing.  A rare moment in a thankless job…

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Julia’s first penned words after coma

 

Recently, we were told that “depression” is something they are actually looking for, as growth, because it indicates insight into their situation.  Think about that.

I know what they’re talking about.  I see the dead-eyed look in the people around her in the hallway… in the dining hall.  I think of Lt. Dan in Forrest Gump who wanted to have been left out on the field.  I imagine they think Julia’s positivity is an indication that she’s lacking insight into her situation.

Her Aunt Jen asked her recently, “How are you feeling about all this?”

Julia said, “I know it sounds strange, but I really don’t think about the accident much.  I think about when I’m better.”

That’s exactly right, Julia.  Positive visualization.  Believe and receive!

I think that’s pretty insightful…

 

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Watching the Sunday Game

 

A book Julia was raised on is Man’s Search For Meaning.  The author, Viktor Frankl, survived one of the most barbaric Nazi concentration camps, Auschwitz.  In his memoir, he writes of watching a man, malnourished and riddled with sores and lice, take his one ration of stale bread, and walk over to another man, more sickly, and give it to him.  In this moment, Viktor Frankl has the epiphany that the brutal soldiers can take nearly everything from a prisoner, even their life.  The one thing they cant take is their ability to choose how we they’re going to react to the situation.  I learned this lesson live, in person, watching my college friend, Dan, battle elegantly with his own fatal illness.  Thus, this quote from Frankl’s book graced the cover of our 1st fundraiser in his name:

“The last of human freedoms is the ability to choose one’s attitude in any given situation.”

I love how he calls it a freedom.  It really is a freedom if you think about it.  We always have a choice over our attitude, no matter what anyone else does.  It’s freeing!  I so see that in Julia now.  I don’t think it’s a lack of insight.  I think it’s a courageous act of freedom.

IT TAKES A VILLAGE

I recently faced the daunting task of moving.  This was a colossal effort.  Not just because it’s the first move I’ve made without a partner with strong shoulders.  Or because I’m a boarder line hoarder.  But because I had no energy for it.  Zero.  No motivation whatsoever.  I didn’t care what went where or if it got thrown out altogether.  It all seemed so inconsequential.  Like my will for it was missing.  And all I wanted to do was be at the hospital.  As I put it off, anxiety mounted.

Our lives are shaped by our fears, real or imagined.  Usually we overestimate the problem and underestimate the resources.  As blessings in my life don’t seem to stop raining, resources appeared in abundance.  My sister-in-law, Jen, hired movers for the big stuff.  My sister Susan and her sons Zach and Johnny spent a full day packing and hauling boxes.  As did friends Lauren, Kerry, Angela and Charlie.  Paul Padien donated his legal services to protect me from a vicious landlord and her heartless, aggressive lawyer Peter (whose last name my lower-self would love to publish).  That was while my other sister/sister-in-laws stood sentry at the hospital in my stead to make sure Julia got her mid-day rest.  I feel protected and grateful and relieved it’s over!  Thanks to all!

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Super Bowl Sunday 2018  *  Fly Eagles Fly

 

My mother used to say, “Some people run faster when they’re ahead, some people run faster when they’re behind.”  My daughter must be the latter because good Lord is she running!

She takes to every therapy session like it’s the first one of her daily grueling schedule.  She works tirelessly without complaint.  The other day she was on a machine in somewhat of an inverted position, doing leg presses upward with her 1 good leg.  After several sets of 15, I could see she was in pain.  Not just by her face but by her shaking leg.  “Are you okay”, I asked.  “I’m okay,” she said.  The therapist said, “Do you want to try a couple more Julia or do you want to stop?”  (Me: Shaking my head)  Julia: “I could do a couple more.”  Therapist: “Okay how many do you want to do?” (Me: Holding up a goose egg)  Julia: “10?”

Julia’s long-term memory is returning but her short-term memory has not.  She has to be re-oriented constantly as to where she is and why.  This would be scary to me, but she stays poised and present.  “I think it would be scary”, she said, “but because I know there’s a reason for it, it’s okay.”  (I think she means a medical one, but I wonder…)  To choose one’s attitude in any situation!

She tells me of her dreams at night that are fascinating, and often involve my deceased father.  We work with her confusion and disorientation during the day as “daydreams”.  We work on ways to help her separate her daydreams from reality.  I tell her, “Julia, in 30 years, roles will be reversed and you’ll be helping me figure what is real and what’s a daydream so let’s figure out a code word between us now so that if other people are around, and you get off on something you think is real but it’s not, I’ll just say it.  Then you can do the same for me, deal?”

“That’s a good idea,” she said.  “A code word… how about, ‘Oprah is coming to Pennsylvania’?”  Perfect.  (Philadelphia’s a great spot for a Presidential announcement. ; ))

Tonight I walked in after her brother’s basketball game, minutes after friends from SJU had left from a 3-hr Scrabble tournament.  They sent me pics and I was excited to hear about it, as these fellows are among her favs.

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George: “Despite everything Julia still kicks butt”

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I burst in, “Hi! I heard the guys were here!  How was it?”

“What guys?”

When I remind her of the games, she says, “I’m at the shore.  I’m in Gran’s basement.”

So that’s an example.  What I think is interesting is how often she thinks she’s at my mom’s house.  I guess that’s a safe place.  I tell her I imagine when I’m daydreaming I’ll go there too…

 

Our problems are only as big as the ones behind it.  That fender bender that made you miss an important meeting is only important until your kid gets into none of the colleges they apply to.  Which is only big until you lose your job.  Which is only big until that diagnosis.  Which is only big until 2 tons of steel mow down your daughter in the street.  Which is only big until someone takes your child, and you can’t see or touch or know how they are.  At least mine is sleeping in a hospital bed, under my watchful eye, as I write this.  That’s how I see it.  Thank God I have the freedom to do so.

Julia’s cousin Greg and his fiancé Biz considered changing their wedding date this summer so that Julia can dance at it.  Maybe they won’t have to…

Today’s miracle:  Julia takes her first steps.

 

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Julia stands up for the first time: February 6, 2018

 

JFBelieve – Leaving Hospital for Rehab

GRADUATION!

So much has happened in the last weeks, I can’t begin to tell you…!

Julia moved into a different room in the ICU – one with a window.  Julia is a nature freak so maybe I was seeing what I wanted to but it seemed she opened her eyes more.  It also helps regulate her sleep cycle.

She had her 2 major surgeries – 1 to set and repair her right leg, the second to repair her facial and skull fractures and her sinuses and to replace her skull cap.  She came through both with flying colors.  After both of which, she was very tired.  After the head surgery her eyes were swollen shut most of the weekend.  Following the surgery on Friday to replace her skull cap, her face and eyes were pretty much swollen shut for the rest of the weekend.  In the moments she was awake, despite her closed eyes, she attempted to sign.   Which generally consisted of the sign language equivalent to “yes” or “O.K.”  Despite the weight of the comatose exterior, it became clear, inside, she was awake!

On Saturday, her nurse case manager sat her dad and I down and said, “Julia is beating all the normal expectancies of progress – we need to start thinking about Rehab.”

Sphincter say what..?!

We visited Moss the next day (Sunday) and Magee on Monday.  I felt immediately at home at Magee.  A 15 foot Christmas tree greets you upon entrance with a million tiny gold ornaments with the same word: “Believe”.  As I glanced down at my #JFBelieve bracelet (Thank you Nina!) I thought, “Do I even need the tour?”

When we got back to Jeff, I was so ebullient from the visit to Magee, telling her about the “Believe” tree and the meditation room, etc and suddenly a Physical Therapist and Occupational Therapist burst in and say,  “We’d like to sit her on the edge of the bed if you don’t mind.”

Where?

“On the edge of the bed.  To look out the window.”

Sit?  As in… up?

Before her incredulous dad and I could blink, they were turning her, in concert, to sit on the bed’s edge.  She looked like a little lump of lead.  The PT kneeled on the bed behind her, bracing all her weight against Julia’s back.  Julia struggled to crane her neck to hold her heavy head barely upright.  The OT, facing her, held her mangled leg out straight, and asked, “Is she an athlete?”  To which we answered, very much so.

Julia holds a squezzy stress ball in her right hand to prevent her from picking at her head sutures.  The OT hands her leg to Pat and makes a hoop with her arms and stands back from Julia. “Julia can you make a basket?”  I glance at her like she’s crazy, while Julia cocks her hand back and makes a basket.  Pat and I cheered like the Eagles won the Playoffs.

Next, they asked, “Does she have a favorite song?  Our pre-party pump jam is “The Dog Days Are Over” by Florence and the Machine.  The therapists not only knew this song, they called up a Youtube version of it where the band is singing it to a sick girl in the hospital.  (HUH?!)

As it plays, Julia watches the singer, Florence, sit on the girl’s hospital bed, and sing.  Suddenly, Julia grabs my hand.  She threads her tiny fingers in between mine and starts moving our conjoined hands up and down against her good leg.  Awkwardly to the rhythm at first, but then gradually picking up pace.  Astonished, I ask her, “Are you dancing Jules?”  To this, she points to me… then back to herself.

“Are WE dancing?,”  I corrected.

To this, she nods her head, right on beat.

Pat and I FELL OUT.

Florence & the Machine is singing to a young woman in a hospital room, somewhere in the world (we’re all connected).  My daughter, who was run over by an SUV, exactly 4 weeks ago, is now watching all this.  Sitting up and watching.  And mouthing the words.  And dancing.  DANCING.  (And people think there isn’t a God.)  Pat and I are laughing so hard we’re about to get remarried.  (Kidding Chris)  Laughing and laughing and rejoicing, with gratitude, for the laughter.  My daughter is such the teacher.  This is quite the semester.  The tuition, so far, unbelievably, is worth it.

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The next day, when she woke, I told her how great it was to see her.  She made a sign that is bringing her fingers to her chin then pulling it forward.  It means ‘Thank you”.  Julia’s first word, as a baby, was Thank you.  It began as Ah-hee.  Then eventually became thank you.  She said it all the time… long before Mommy or Daddy. Watching her brain struggle for words, now, that her trach prevents her from forming, then recalling a signing gesture of “thank you” brought me back to teaching Julia to read when she was younger.  I would correct her frequently, (which I hated when I was learning something new as a child, remembering what a frustrating excercise it was.  But not for Julia she would say thank you everytime she was corrected.)  Just like now.  She’s being poked and prodded all day.  it takes forever for her to do the things that she possibly can do.  And all it is from her the same thing constantly… Thank you, thank you, thank you.

My daughter never met a learning curve she didn’t like.  The way she is embracing this blows my mind.  I said to her the other day, “Honey, the grace with which you are walking through this is in-credible.  You are teaching me so much, you have no idea.  It’s like I can not believe I got picked to be your mother.  I want you to know I’m not crying because I’m sad, I’m crying because you have re-sized my heart exponentially, and it has swelled past the point of capacity.  With sheer wonder, it’s like I’m walking around high on inspiration drugs.  You are truly my hero.  An can I tell you something else?  You’re Daddy’s hero, too”

i am?  She asked.

Yes, I said.

And her faint little voice she said, ” That’s pretty cool…  To say the least.”

When we put a pen in Julia’s hands for the first time and gave her a notebook, she wrote, “nice is nice.”  She probably meant “This is nice.”  Which is incredible enough.  Her graphic artist cousin, Patrick, added a tree and a butterfly and Aunt Jen and Uncle Matt had them made into T-shirts.  Bright yellow ones.

The goodness and compassion of others has been astounding.  People who don’t even know us!  I can’t keep up with thanking them!  Julia has re-colored the whole hue of humanity for me and it’s a shade as bright as Matt and Jen’s shirts!

 

 

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It hasn’t been all rosy.  She’s making so many cognitive connections, I can get ahead of myself.  Like when she sang the entire Eagles Fight Song, in her soft faint voice.  Or when she said about the noisy neighbor next door who grumbles vociferously, constantly, “Dont let it bother you Mommy, he’s probably just hallucinating.” (Ok Ghandi.)  But the other day when Pat told me she hadn’t remembered him after dinner was a tough one.  That kind of broke my heart in pieces.  I hadn’t realized her memory was so spotty.  That was a therapeutic cry on the way home from the hospital that day, for sure.

The next day I asked her, “Honey do you remember me?”

“You’re my mom.  Why do you ask?”

“I’m not sure… you hit your head pretty hard.  It would make sense if your memories are fuzzy.”

Julia takes my hand.  “You’ll always be my mom.  100%”

When she sees the smile spread across my face, she corrects herself, “101%’

Today the Hawk Paper on St. Joes campus is running an article on Julia for which I’ve been asked for a statement.  Of course, that can be tricky where legalese are concerned, but in Julia’s name I feel the need to be as honest as possible.

I hope public safety on SJU campus improves.  I also hope they know the gratitude the Furey-Bastian family feels for their outreach and support on Julia’s behalf.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

JFBelieve – Hard Images that Teach Us

  CAUTIONARY TALE

 

Emmett Till was a 14 year-old African-American boy who was accused of staring or whistling at a white woman in Mississippi in 1955.  For this, he was abducted by 2 white men, beaten, tortured, mutilated, shot and then thrown in the river.  When his boated body washed up the next day, his mother had the gumption and courage to hold an open-casket funeral service for her boy, that tens of thousands attended, to show the effects of racism.  The men who killed him went on to be acquitted of the crime, despite multiple witnesses and their own hubris in bragging about it.

That white woman involve later confessed, on her death bed, that Emmett had not done what she accused him of, and that she was pressured to lie.  An unspeakable tragedy that Emmett’s mother turned into an opportunity to not only expose the barbarism of American racism but also the corruption of the judicial system and limitations of American democracy at large.

When my clock radio went off this morning at 6 AM, the newscaster was saying that today is the night each year that has the most drinking and driving-related deaths.

I ask that if you are anywhere tonight where you see someone considering driving who shouldn’t be, please show them the pictures bellow.  We are a visual society and sometimes a picture has more impact that a well-reasoned argument.  This is the effects of impaired driving.  If it can save one life tonight it will have been worth it.

Have a safe New Year, Friends.

 

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JFBelieve – Thumbs Up

THUMBS UP

When Julia was in utero, and I went for my first ultra-sound, like all mothers, I was anxious to see her.  The effort of the nurse pressing the monitor over my belly was making me have to go to the bathroom.  After 5 minutes of not being able to see Julia – who was tucked so far down and out of site – we were about to give up.  Suddenly, into view came a little hand.  The nurse exclaimed, “Look – her thumb is sticking out!”  And there it was, before my very eyes, a fetal thumbs up.

My mother went on to write the nicest letter I’ve ever received, after that first week that she spent with us.  She wrote about Julia, her observations of us as parents, and all the love Julia had craddled herself into.  She ended it with, “That’s why it’s ‘Thumb’s up’!”

Though the medical coma Julia was placed in is over, she still remains largely comatose, except for moving her right arm spontaneously, and half-opening her good eye.  Up until Thursday night when the nurses were jostling her around from gurney to gurney for a CTscan, in addition to the bright lights, she woke enough to respond to the nurse who asked her, “Can you hear me?”  Julia gave a thumbs up.  She was then asked if she goes to St. Joes.  To this, she nodded her head yes!  Memory!

The next day she would not replicate that responsiveness for the docs and stayed sleeping or unconscious most of the day.  Last night around dinner, she woke briefly.  I took the opportunity to tell her that people have been responding to the blog that I have set up for HER to take over, and that her faculty adviser, Julie, is now shopping for a publisher for us to co-author a book.  To this she attempted a closed-mouthed smile (that looked like Chinese man, it was so cute) and gave me my very first Thumbs Up.  I almost had a heart attack.  I did that crying/laughing thing from the movies.  My girl is back!  Just like I absolutely knew she would be.

Yesterday morning she had the leg surgery to repair her broken bones and knee tendons.  She passed with flying colors.  The docs warned us she would be comatose the rest of the day, and tomorrow.  Au contraire!  Not only were both eyes open, when I asked her how she was, she said in sign-language, “O K.”!  I then asked if she could sign her name and she did!  J-U-L-I-A!  When I saw her dexterity in her right hand we gave her her Ukulele.  She picked for a bit and then actually strummed. (See video below.) When we asked if she was in pain she faintly shook her head no.  Today was an amazing, faith-re-enforcing day.

On Thursday, I had preliminary trial for the driver who hit her.  Pat wanted no part of it.  It ended up getting continued to 2/5 because the results of the blood test are not in.  I saw him though.  Next to his pregnant wife, who mouthed the words to me, “I’m sorry.”  I felt badly for them suddenly and gave them the peace sign.  More carnage and pain from this is not what I want.  A witness who was in the car closest to Julia, who stopped when the light turned yellow, was there.  He said he saw Julia’s face when the car next to him came at her.  With the headlights rushing at her, he said she “lit up like a Christmas tree.”  He’s been having nightmares about it since.  The reason he didn’t assist her on the scene was because he assumed, by the way she flew in the air after the impact and landed in the street, she was gone.  He said he watched her rib cage and she was not breathing.  The campus police who arrived were “freaked out and clueless” by his account, which I have less than compassionate feelings about, obviously.  He said, “The girl with the glasses (her friend Emily) controlled the situation.”  Again and a million times – thank You, God, for Emily.

The next step is the second and last operation she is scheduled for at Jeff, which is for her face, sinuses, eye and head.  On Friday, they will attempt to fix the multiple fractures in her face and around her eye.  If successful, they will replace the half of her skull cap that was removed last week and placed on ice.  Obstacle by obstacle, we are really and truly getting the Starting Line.  Just as I knew, thanks to God, and your prayers, we would be.

The beat of connectivity goes on.  We have a journal that visitors write in when they come into the ICU which, at Jeff, is on the 9th floor.  The other day, Pat was recalling a submission he read in it from one of her friends.  The friend was telling a story about asking Julia once, “How do you totally not care about what others think about you or what you do or say?”  Julia said, “I do care what people think.  But then I just say 3-2-1 and do it anyway.”  Then, my sharp sister, Maureen, says, “Pat look at the top of the door.”  Julia’s room number is 9321.

Happy New Year!

 

 

JFBelieve – Connectivity

CONNECTIVITY

December 26, 2017  9:00 AM

2 weeks ago, I was at the shore, right now, visiting my mother, grateful that she didn’t wake me for morning mass.  The clients I had to re-shuffle to make the 2x/mos commitment to visiting her, now that she’s 89, was my biggest problem.  Blissfully oblivious was I to the fact that my life, as I knew it, was about to be over.

My Christmas highlights were Julia opening her left eye a little, now that the heavy sedatives are flushing their residue out of her system, and moving her right arm up and down.  Julia and I have a silly, silent code between us of a shimmy.  Before either of us do something brave, we shimmy to each other for confidence.  Every day before I dropped her off at middle school and then high school – until she boarded at Westtown – she would get out of the car, turn to me and shimmy through the window.  I would shimmy back as if to say, You’ve got this.  When some family members were in the room on Christmas eve, she did this little shoulder wiggle.  My niece Alyssa wrote a text saying, Julia just shimmied for me… my Christmas is complete!

The big news yesterday were results of her MRI.  We had been waiting for this for prognosis.  She has damage to the right frontal lobe, and the left back part of the brain where the impact caused a whiplash effect, ricocheting the brain diagonally from corner to corner.  In between those 2 spots are pathways that are “inflamed”.  This is to say that they are metabolically effected (whatever that means) and, cellularly, can go in either direction, better or worse.  The take-away is that they are potentially “recoverable” through rehab.  There is no stroke or ischemia (lack of blood or oxygen) so regeneration and recovery can not be ruled out.  Thank God for that!!

The damage at the front and back points of impact are supposedly permanent.  The damage in the back effects her field of vision.  The damage in the front effects cognition, memory, and personality, but they don’t know how much.  Permanent brain damage.

Words have so much power, don’t they?  We throw them around like they’re invisible pieces of air.  Little nothings that evaporate when spoken, without leaving a trace.

But they are so much more than that.  I think someday we’re going to be able to measure the power of words.  They get into the carpet and the drapes…  They stay burnished on our souls much longer than a bruise on the skin.  The big word in this neurological consult was recoverable.  Recoverable is a big, fat, strong word full of hope and potential.  Permanent is a word used by medical people based on their experience only.  It does not take into consideration this particular patient and the strength of the network of love and support around her.  They do not know you and the strength of your prayers and positive energy.  And they do not know Julia and the strength of her hope and will.  For every “First Time” of anything there is impossibility before it.  I believe, wholeheartedly, that Julia’s role is to open doctor’s minds in a way that they’ll go on to tell the next TBI patient, “We’ve seen people go on to recover from even what appears to be unrecoverable now.”  Wouldn’t that be a legacy?  Julia will love that challenge and roundly embrace it.

The next big surgery, when Julia is stable enough, is for her right leg which is badly damaged.  Besides the fibula fracture and torn knee ligaments, severest risk is from an artery that is “dissected” which is to say it is shredded in a way that, every time she is moved, threatens a tear which would cause interior bleeding, which would not be good.  The vascular team has wanted to get their hands on her to prevent this since she was admitted.  The neuro team, and her brain, however, took precedence.

Watching someone struggle to move and respond to our commands can be heart-wrenching.  I can’t imagine what it’s like to be trapped in your body, paralyzed to get it to do what you want.  I watch her one eye, through the slit of her eyelid, dart back and forth as she struggles to connect her brain to her body.  Sometimes she moves her lips, open and close… no words come.  When they stick her over and over for endless IV’s, however, she is beginning to recoil from the pain.  This, ironically, is what we’ve been waiting for.  Because it means CONNECTIVITY between her mind and her muscles.  This is what we are looking for now more than anything.

A dear friend of mine and former BC classmate named Dan, whose battle with illness and death at 27 changed my life, has a sister who is a Psychic-of-sorts.  I am skeptical, as many of you are, about the garden variety psychic who panders fraudulently for money.  This woman, Mary Liz, is gifted.  Her connection to “the other side” is eerie and awe-inspiring.  As far as the future is concerned, she said Julia would go on to live a different life than we expected but a significantly meaningful one.  As for the purpose of this, she said it was for connectivity and healing.

As connectivity between people goes, Julia is a bridge-builder.  Just a month or so ago, Julia told me she found and old journal I had given her for her 10th birthday.  I hadn’t remembered it but she said we were going back and forth with the book, writing questions and answers to each other.  She said I had filled it with writing prompts like, “What’s it like to be 10?”  (Ha) She said there was a “Greatest Wish” prompt for her which she had written beneath: “For my parents to be friends.”  Not to get back together.  To be friends.  Every other scenario in all the books I read about how to love a kid through divorce never presented themselves.  Not one.  Julia, in fact, is oft heard saying, “I’d rather come from 2 happy homes than 1 unhappy one.”  The only times I was stumped and stymied was the first couple of years when both my kids would ask me to go to my in-law celebrations.  “But why can’t you come with us?”   As parents, a special kind of pain is when you can’t give your kids what they want.

After the raucous, uproarious Christmas Eve gathering at the hospital concluded with the last of the “Goodbye and I love you” hugs, with the last of some 25 of my in-laws, and it was just she and I alone, I smiled our secret smile to her.  “Did you like that… Maestro?”  And I swear her little fingers moved and wiggled, attempting to curl around my hand.  Just like when she was a baby.  She hears us.  She wants us to know that she hears us.  She is co-creating all this connectivity of which you and I are part.

I can’t tell you the groundswell of support that has erupted from corners far and wide.  The outpouring of love from the most obscure places has been nothing short of stunning.  If I knew the number of people actively praying for Julia I’d guess realistically it is in the thousands.  College campuses, whole parishes… and lots of them.  Unless you’ve been in my shoes, you can’t imagine what that feels like.  To be at the center of a vortex of such grace and abundance…  It’s like I’m looking at the human race in a whole different way.  And all I see is goodness.

Julia formed connections with people that were more than an inch deep.  Even if you knew her peripherally.  Her love for and genuine interest in people and their lives bonded her to them the way you are with that old friend who, no matter how much time has passed between you, you always pick up right where you left off.  Those are the kind of soul-connections that outlast distance and time.  Julia was always looking to learn from and about people so those connections came naturally.  As her Writing teach put it. “Julia was like an octopus… and the places where her tentacles touched were not small spaces.”

There’s a web that’s growing around her and you’re part of it.  Just by reading these words and empathizing with us.  That generates energy in you that you take out into your own life.  And who knows who you touch with it and how.  Not to mention the fact that reading the comments on this site is like pulling my car up to the gas pump.  It is literally part of the fuel I go on to high-step it through the day.  We’re all connected.  We are all connected.  In sleep, as in her wakefulness, Julia drew and draws the loveliest people to her.  If you were in her orbit, you were special too.  And through this experience I feel like we’re all getting more special!  Lol.  She is the rising tide that raises all our boats.

Mother Theresa was being interviewed by a radio DJ in Chicago many years ago.  The formerly jaded DJ was so impressed and moved by her, he asked her, after the show was over, what he could do to help her.  She declined saying dedicating the air time was enough.  He pressed on saying no, he really wanted to do something more to help her mission.  She said, “If you really want to help me, go out on the streets of Chicago tonight and convince someone they’re not alone.”

So… err on the side of connectivity.  People have a desire to be known soul to soul.  Get past the big, stupid, external questions that satisfy people who ask about our lives and take an interest in something deeper.  Maybe not what they do but why they do it.  What part of their work really engages them?  Would they do it if they didn’t get paid?  What makes them most proud about their kids?  And then remember what they said and ask about it the next time.  This is how we connect in the way Julia connected.  And remind each other that we’re not alone.