JFB – Don’t Call It a Come Back

 

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Julia at the Dead Sea in Israel

2 weeks ago, when I went to preview 2 months of recording Julia’s progress, before publishing, I accidentally deleted it.  Distraught, I knocked on my neighbor’s door.  We set her millennial daughter on it, telling me nothing is ever really deleted.  2 hours later, I returned home crestfallen.   I haven’t opened my lap top since.  It’s more than ego. (Though I did feel like the student on the lawn trying to grab their blown papers as they scatter in the wind..)  I have a duty to Julia to be her memory.  So she takes this blog on for her own.  So she can make meaning from this trauma in her own way.  Just as I am.

It’s hard to write when there’s so much to say.  You have to get inside of it and let go.  It’s easy to judge each syllable from the outside.   I’m always self-critical, but sometimes I read what I’ve written and wonder where it came from…  Like I had nothing to do with it.  My sister compares it to her singing.  She opens her mouth and half marvels at what comes out.  Like she’s just a conduit.  The rest is the Holy Spirit.  As I’ve quoted before, Mother Theresa referred to herself as a ‘Pencil in the hand of God’.

 

Sometimes the gifts we’re born with feel like burdens.  I guess that’s part of the reason people don’t live into them.  I watch my nieces and nephews who are athletically skilled and the sacrifices they make to obey them.  My son has something called “court vision” which I can only understand as instinct.  I watch him look one way, then throw the ball the other, and see his teammates score.  A non-athlete, I think, How did he do that?  The 1 out of 10 times it goes out of bounds must effect his confidence to trust himself to do it again.  To keep passing, keep shooting…  I feel that way about writing.  My sister must feel that way about singing.  You might feel that way about your special aptitude.  Our call is to push through it.  To trust that what’s at the end of the risk is worth it.  It took me 2 months to push through mine in what you are reading right now.  Then I lost it.  Then I anted up again.  I had the benefit of being in a relationship with someone after my divorce whose son struggled and fought for who he truly was despite convention.  He’s one of the people I think of when I push myself to speak up and fight for mine.

 

By way of an update, in the 10 weeks since Julia has been discharged, there has been incremental progress.  At first, her coordination on her left side, the result of her right brain injury, that impacts the speed and steadiness of her walking, and overall balance, exceeded that of her neuro-development, more specifically memory.  More recently that has flip-flopped.  Despite countless strategies to get her left foot to plant flat, she walks on the side of it, and before long it’s too painful to continue.  It takes her 3 efforts to stand up from the couch.  I watch her in her head say 1, 2, 3…

On May 3rd, classmates at SJU staged a protest on City Line Avenue about public safety.

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On May 8th, there was a Town Hall Meeting on campus to address students’ concerns.  I was counseled by our lawyer not to attend, so I sent a statement instead that was read.  My cousin Owen, who has 2 daughters there himself, was good enough to attend and give me the blow by blow.  He said it was very well attended.  He said my statement was effective.  I am moved and inspired by the mobilization of students to enact changes that will prevent something like what happened to Julia, happening again.  This is a time when people are listening to young people.  I love that they are using their strong, collective voice for good.

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Julia has been subjected to a number of medieval nerve-blocker procedures that take 10 years off my life.  They allow the doctor to stretch and manipulate her ankle and foot in unnatural positions, then hard-cast her that way.  After 3 days, she has them cut off (relief).  Then days later, recasted again.  More nerve-blockers, more botox shots, more casts.  Each time, we watch hopefully.  “Do you see any change?” we ask each other, optimistically.  Maybe…?

After several weeks of this, on the most beautiful weekend at the shore last weekend, beach-lover-Julia begged off going to the beach.  It’s just too painful to walk on the sand, she apologizes.  More trial-and-error procedures are ahead.  More trial casts, night braces, splints, endless stretching.  I stretch her every morning bleary eyed at 6 AM before she can plant her foot flat enough to brush her teeth.  We are probably looking at surgery sooner than later.  No one knows for sure.  Everything else must be exhausted first.

If you haven’t seen her since before the accident, you will experience Julia as about 50% of her former self, improving .05% daily.  On average, her ambulation is 30%.  As stated, she continues to roll her ankle and has limited range of motion on her left side, making balancing tough.  Her working memory is 40%.  She is most comfortable playing games where she can mono-task, and has become quite the card shark.  I am excited when I beat her at Uno.  Her love for film has not returned.  Plot details are too complex for her to hang onto long enough to integrate and sustain.  Which she realizes, with patience, which is uncanny and beautiful for me to watch.  If I couldn’t follow my favorite shows, I’d be less than patient!

Her physical scars are about 60%.  She had her first hair cut.  Her brain and her bladder are communicating well now during the day, which gives her much greater independence.  Through the night, it continues to be challenging.  She eats and drinks constantly!  Turns out, brain repair takes a ton of hydration and calories!  Somehow, she’s still tiny.  We call it the Life-Threatening-Accident Diet.  Brain-injury jokes are rife.  Finding humor in trauma is as vital as finding meaning in it.

Her personality is 110%.  I say this because, in addition to her original essence, she’s developed a new patience and humor about life.  She teaches me every day about gratitude.  5 times a day she tells me how grateful she is to be with me, and how lucky she is.  “I must have been Martin Luther King in a former life, to be your daughter, Mommy.”  What a coincidence, I answer, I feel the same way.

I catch her quietly genuflecting (crossing herself) here and there, throughout the day, which is a new thing.  “Were you praying, Honey?”  She looks up as if I’ve caught her doing something private, so I don’t ask anymore.  The first few times the answer was: “I guess I was just thanking God for everything… my family… my healing…”  Julia was Catholic by tradition before the accident, but more Buddhist recently in spirituality, which jive more than people realize.  After the accident, she seems much more of both.  Her dad sometimes takes her to morning mass on week days.  She doesn’t mind getting up.

 

 

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BF Colin’s Mom Mary Ellen sends head wraps!

 

Despite the pain and discomfort, we walk as far as we can, several times a day, because she has to build up stamina.  I engage her mind to distract her body.  “I wonder why God made the wind invisible, that the only way we know it’s there is by its effect on the trees?” I muse.  “Maybe to teach us the most powerful things that effect us aren’t visible but still real,” she says.  We’re interrupted by a car sidling up, rolling down the window, presumably for directions…  A concerned man asks, “Do you need help?”  We look at him, and then each other, as if everyone doesn’t hobble around the neighborhood, holding hands, lost in conversation and laughing.

 

 

A classmate of Julia’s from boarding school asked last month if she could interview me for a final paper for a college course called Medical Anthropology.  (?)  The course, she explains, is about examining the interventions current medical service delivery does or does not meet actual patients’ needs.  For example, she tells me, “If someone has X disease, and they undergo 7 surgeries, does that really advance their quality of life?”  She says she’s been following this blog and interested in what, to her, is a novel view on illness.  I feel flattered but skeptical I can add anything.

Before she comes over, she tells me she’d prefer to interview me without Julia.  That way, my answers are more “raw”.  When I share this with Julia, we smile at each other and she reads my mind – I’d probably be inclined to be more honest if she were there.  We both laugh.  Julia’s presence has a grounding effect that keeps things real for everyone.

When I ask this classmate, Marisa, what kind of questions to expect, she says, “Basically how your relationship with Julia has changed.”  I want to be a good subject but I admit, “What if it hasn’t?”  She tells me to just say that.  Then she says she’ll be asking questions about my experience as a “caregiver”.  I feel dumb and stymied in the face of this question, also.  There are no caregivers here is the truth.  Only care ex-changers.  She says to say that, too.

I time Julia’s nap with Marisa’s visit and, as God would have it, she takes an unusually long one.  She and I talk outside under the trees for 2 hours.  A whip-smart biology major, she tells me the class is filled with pre-med students.  The professor’s intention is to shape future docs and caregivers in the direction of patient’s real needs, not academic ones.  I take this opportunity to make my pitch about desperately needed mental health “best practices”.  I tell her my opinion about how technological progress has eclipsed behavioral health progress.  “How is it that my phone can start my car but something like Penn State and a Sandusky can happen?” I query.  How is it that we don’t know what causes Pedophilia?  How is it that we don’t know how to cure it, and we don’t know, to what degree, it is contagious?  How many of those who are “infected” go on to be perpetrators?  If we don’t know, doesn’t that constitute a public health concern?

A serious interviewer, she takes copious notes and asks solid follow-up questions.  I feel grateful, suddenly, that I don’t have to work today.  That I can sit outside while my healing daughter enjoys her ‘cognitive rest’, while I trade stimulating thoughts with a mover and shaker who will go on to effect the future of healthcare.  I feel, once again, the connectivity and purpose that has marked Julia’s journey from the start.  Finding meaning through trauma is imperative.  It’s been raining in abundance around me since.

Her third question takes me off guard the most.  So off guard that I can’t recall the exact language.  The essence is about “appearance.”  Appearance?  Subtext, I interpret:  ‘What’s it like to have a daughter whose outward appearance has been significantly altered?’  Quite a courageous question!  My nonplussed expression must make me look naive.

After I think, I say, Listen,  I’m no Bohemian like Julia.  I was a cheerleader (my kids won’t let me forget).  When I was her age, I had the best (worst) home-perms.  I like Ann Taylor.  I like my pedicures.  I get what you’re asking.  I’m sure I, subconsciously or otherwise, trade on my looks like any other shameless red-blooded American woman.  I understand that beauty is currency; power.  Pushing 50, I’m aware that there are only so many more times I’m going to be able to get through the toll booth with no money.

She laughs while I let myself ponder ‘appearance’ in terms of Julia…  A blue-eyed, blonde with slim hips and long legs, I guess she does draw stares at Target now for different reasons.  But, because she’s impervious to it (as she’s always been)… and because when you’re with her, her spirit takes up all the space around you… you’re unaware of anything else, too.  That’s the corny, honest answer.  All I see is beauty.  So I think that’s all anyone else can see.  And if they don’t, the unbelievable (to me) truth is, it doesn’t matter.  Having been conditioned by a youth-worshiping culture, just like you have been, where old women are invisible, I never thought I would see it that way.  But I do now.  Thank you God for such a gift.  Before I’m invisible.  Talk about freeing!

 

Month before the accident.  Doesn’t shy from a dare.

 

Speaking of 50, my BC roommates hosted a birthday reunion for me in CT.   I folded in a visit with my closest brother Richard and his wife, Danielle, who live there, as well, which was meaningful.  I got to spend time with their daughter Brynn, who is as bright and socially conscious as her cousin, and who reminds me so much of her.  So much talent and promise!  The 3 hours in the morning, in our pajamas over coffee, we spent jawing, went by like 3 minutes.  I could write an entire post about the daughters my brothers – all 3 of them – have raised.  All 8 of these young women make me proud to be a Furey.

My college roommates, then, provided a different kind of prescription the doctor ordered!  Coffee-table-dancing!  I haven’t blown off that much steam, or laughed that hard, since 2017.  The gold “balance” bracelet they gifted me is still on my wrist.  The “strength” earrings are still in my ears.  I continue to be overwhelmed by the connectivity, or reconnectivity in this case, Julia’s accident has catalyzed.  I rode the train home to Philly Sunday night, grateful to God for all the “color purple” I see everywhere.

 

PSA

In a delicate moment, approaching Julia’s discharge from the hospital, my best friend growing up, and a plain-spoken, realist, Traci, rather than tell me I can do it, takes the opportunity to tell me how hard the road ahead will be, that she fears I’m not realistic about.  I remind her that we all had newborns!  She says, So what?  “Well what did you do with Sammy?” I challenge.  Without a beat, she says, “I put him in a swing!!”  Then she adds, “SEE YA!”  Since we were 6, she knows how to make me laugh.

What I’m facing is hard, but it’s the good kind of hard.  What thousands of kids separated from their parents at the border are facing is the bad kind of hard.  I did my dissertation in grad school on Reactive Attachment Disorder, which is a big term for the effects of taking kids (usually from foster home to foster home) from people with whom they are attached, and on whom they depend.  No matter your beliefs on keeping our borders strong, a worthy discussion, the health consequences for these kids are serious and will, inevitably, be visited upon us all.  There will be regression in these kids of all kinds.  Hygiene development, paranoias, acting out aggressively toward their peers, distrust of authority.  Their psyches can’t process the adrenaline surge their nervous systems are experiencing.  It has real effects, and is a credible public health concern.

We our curating the kind of violence we are trying to stem in our schools with our gun control debate.  Let’s take the long view and see how actions and consequences are connected.   The shelters aren’t the problem; the exorbitant cost isn’t either.   It’s the separation from the parents.  For even 72 hours.  Tent cities are breeding grounds for trauma that will twist in our direction with no good end for anyone.  Every time a child is separated from their parents, the next time they are, even for an hour, they will think it’s forever.  Trust is obliterated.

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When you can’t trust anyone, psychological consequences follow that we all will absorb.  The usual talking heads will scratch their heads on the Sunday morning news shows when it ends in violence, and wonder why.  Crimes are the combo of 2 things:  Motive and Opportunity.  In a free society, we have little control over opportunity.  The motive, we do.  All random violence has one thing in common: Social Isolation.  Do your best to teach your kids that an injury to one is an injury to all.   No good or bad deed exists in a vacuum.  Everything has a ripple effect.  We’re all connected.  For better or for worse.

Thank you for your continued prayers and support.  They mean more than we can express.  You have a stronger hand in lifting up Julia’s continued progress than you know…  One foot in front of the other!

 

Julia’s Godmother Susan and her teacher Kevin from Westtown

10 thoughts on “JFB – Don’t Call It a Come Back

  1. As always beautifully written- thanks for sharing! Please let me know when you have Julia- Rach and I would love to see you, Julia and Bo soon! xo Kathi

    Sent from my iPhone

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  2. I really enjoy reading and processing all that is going on with Julia. It must a challenge every day for all of you, but she is definitely here for a reason. She is an amazing young lady. Sending love, hope and faith to her and her family. Jenny

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  3. Thanks so much for the update! Also, thanks for referring to me as a “young woman” 🙂
    YES – I have thought of all of my RAD kids so much during this humanitarian crisis. Spot on.
    Continued prayers to you guys from Cincinnati.

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  4. I still remember the first time I met Julia. It was my freshman year of high school and I was really struggling; so much so that I was considering transferring schools. Julia happened to be my tour guide at Westtown. I don’t remember much of the tour in terms of academics and showing me around, but I remember her and the way she made me feel.

    I am so bad around new people and especially those my age but I was at ease around Julia— so at ease that I wasn’t the slightest bit taking aback when she burst out in song. I guess she had a free period in her schedule that day because we found ourselves in the basement of the art center. She started playing the piano, a song by twenty one pilots called Truce.

    “Now the night is coming to an end
    The sun will rise and we will try again

    Stay alive, stay alive for me”

    I remember her singing and me singing along with her, a rare feat considering my social anxiety. She taught me the chords too, and I can still play them.

    I ended up transferring to Westtown the next year. Julia was my first friend there and she made me feel so welcome. We even went to some concerts together. The twenty one pilots concert was my favorite because it was over their music that we became friends. I honestly believe that my encounter with Julia during my freshman year of high school was a turning point in my life.

    I saw that it was okay to be unapologetically yourself and to let your guard down around strangers. That there was nothing to fear because everything was meant to be. It was that one friendship with Julia that sparked many others, and I’ll always be grateful for her.

    I’ve thought about her so much these past few years and letting our friendship dwindle was one of my biggest regrets. I feel horrible that I only found out about the accident recently, but you are in my prayers.

    I know in my heart that she is going to be okay. She has such a lovely spirit and capacity for doing amazing things. This may have slowed her down momentarily, but it’ll never stop her. I am so excited to see where her journey leads. JFB was and is meant for great things. Thank you for raising such a strong woman.

    Peace and love. Rachel.

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    1. What an astounding tribute Rachel; I can’t wait to read it to her. I’m glad she had a hand in igniting a spark in someone so obviously promising. Great people attract great people. We are all connected. Gratefully, Dyan

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