Hello Everyone, This is My First Post!

Hi everyone, this is Julia speaking!  This is me above teaching my 90 year old grandmother Backgammon!  My mother has been brilliantly capturing my journey thus far, but I’d like to have a moment to tell you myself.

For about half a year now, my day has consisted of a series of therapies to help my walking and my memory.  Although the therapies have truly been a blessing, and I do feel myself improving, it hasn’t made up for the fact that I can’t return to Saint Joe’s.

That being said, I did get to go back to Saint Joe’s earlier this month where I got to see some teachers and friends, and an added surprise of the head of school, Mark Reed!  I was greeted at the writing center by my old professor, Dr. Spinner, and we met my friends Emily, Javon, and David as well as friends who have graduated, George and Peter. All of us walked around the campus visiting other past professors, Patrick, Julie, Jamie, and PK, among others.

They have been working hard on campus on safety reforms so what happened to me doesn’t happen to anyone else.

They recently passed this Public Safety Resolution.  I am very grateful.

 

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My visit to Saint Joe’s wasn’t my only return to school.  I have also started taking a class at my old boarding school, Westtown! There, with my teacher, Kevin, returning to my greatest passion makes my life feel a little more right.

The class is World Religions. It is one I have taken before, with the same set of readings, so it is a good level at which to start my scholastic return. That being said, each reading I am assigned is one that I have to read one or more times, and take notes while reading in order to retain the content of the chapter sufficiently. You would think that this would be frustrating, however, I am so grateful to be back to school that it isn’t.

Religion was one of my majors in college, and greatest passions because I am deeply curious about the infinite, diverse views of the world. Religion is the most important aspect of many peoples’ lives. I’m curious about how beliefs can be so defining and bring us together or divide us.  The more I learn about varying beliefs, the more accepting I am of people I meet, which is my first priority.

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I think this accident has shown me the quality of the friends that I’ve chosen.  They’ve all been so loyal and present.

I also this past month had the privilige of spending time with a college classmate of my mom’s who flew in to meet me.  She’s a physician and gave us hope about what she thought were signs of my physical and cognitive progress, considering my injuries.  She works with Doctors-Without-Borders and invited my mom, my brother, and I to come on one of her missions this summer in Africa.  This is a pure dream of mine.  I hope I am fit enough to go.

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Thank you Dr. Gretchen for Giving Me a Goal

 

I met with a surgeon who thinks he can help me walk better and with less pain.  My mom left there saying, thank God for first world medicine.  The surgery is scheduled for November 28th.

Lastly, my brother arrived at my mom’s last week leaning on the doorbell instead of using his key.  When we opened the door, all 6’3 of him was standing there, with the tiniest kitten in his arms!  His friend, Joey’s cat had kittens.  He looked so funny my mom and I kind of freaked out and burst into laughter.  We didn’t know whether to be more shocked or happy.  She is a sweet addition to our family.  Despite that Bo wanted to name her Rodeo, I’ve christened her “Hillary Kitten”.  My PT asked if we were going to put her in pant suits.

 

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Thank you for reading and for your continued prayers.

 

Note From Mom:

6 months post-discharge, Julia’s physical progress is microscopic.

We work daily on her left side, in PT, OT and and at home.  If we didn’t, she might slide backwards.  No one really knows.  We’ve invested our hopes in an aggressive surgery at November’s end.  If she could walk better, she’d have so much more independence.

Where Speech Therapy is concerned (a.k.a Cognitive Therapy), there have been significant strides.  Cognitions have improved at a steady pace since we started at Bryn Mawr 6 mos ago.  You wouldn’t believe the conversations she’s capable of.   Since this is the one thing Julia cares about, we are grateful.  Short-term memory is still an on-going challenge.

If you’ve followed this blog, you know Julia’s parents differed about her discharge plans last spring.  Each with our own ideas of how to best orchestrate her out-patient recovery.

Sister-in-law Jennifer and friend Kerry nobly put themselves between us like human shields.  Brothers Bill and Richard supported further.  All walking the fine line of keeping their eye on the prize:  Julia.

My friend Elisa, years back, said, “When you’re pushing against something that’s pushing back on you with equal strength, how do you win?  Move out of the way.  That’s how you win.”

In an elevator last week after scheduling her next surgery at Penn, Julia’s dad and I mused over the number of hospitals she’s been in.  When he added Christiana, Julia asked when she was there.  When you were born, we answered!  Her birthplace hospital… something melted in me.  Remembering a hospital where we were in each other’s fox hole, together against the risks, made me move out of the way.

The way Julia and I get through this is to look for the gains and learning from her accident.  I’ve highlighted extensively here the compassion, sensitivity and generosity it has brought out in others.  Crisies draw out our strengths.  Many previously unrealized.“

The strengths I want to highlight in this post are her father’s.

I wrote earlier that I believed Julia and I, because of our spiritual approach toward suffering and the opportunities it offers, were built for this.  From watching Pat since discharge, I believe he was built for it even more.

He has his mother’s work ethic.  Disciplined, uncompromising, intractable and laser-focused.  Many of the things that worked against our marriage are working for Julia now.  There are many elements to the insurance-coordination since she has 2 streams (1 from college).  Pat is on top of it all.  We have different ways of advancing our goal of getting her better.  The minutia organization is squarely within his bandwidth and I have to say, he’s great at it.  Towards her independence, he’s myopic and relentless.  Him doing his part allows me to do mine.

No one is any one thing.  We’re a mixed bag of light and dark, all.  What we have in common is:  We’re most alive when allowed to do what we do best.  Many demands of Julia’s recovery are in her dad’s wheelhouse.  It’s a pleasure to see someone do what they do so well.  We all benefit.

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Professors Patrick,Julia’s Dad, Dr. Spinner and Julia on SJU Visit

I also acknowledge Pat’s partner, Chris, and her mother “Grammy”, who spends a lot of time with Julia.`  This is something Chris did not bargain for.  Along with her very cool kids, she has responded to it generously, with stamina and with grace.

Julia’s accident is tragic.  It has changed the trajectory of her life.  I’m no Pollyanna, blowing sunshine everywhere.  The losses, I grieve in waves.  Some days, on the 8th day, when I give her back to Pat, I lay on the couch with the curtains drawn watching Super Soul Sunday on OWN, looking for inspiration and praying to regroup.

We fight to let it bring out the better in us, anyway.  Finding meaning through trauma means accepting the daily losses as well as celebrating the gains.  Realizing we can be more for both.

As inspiration goes, the following is from my college roommate, Mary Kay, who I have not seen in 20 years:

“I have begun teaching GED classes at the local jail here, in addition to bible study.

Back in Jan/Feb, I read your entire blog to the inmates – in the women’s class and the men’s – and handed out copies.  It had a profound effect.  One girl cried through the whole class.  The guys were dead silent, you could hear a pin drop.

I was really moved by your ‘Restorative Justice’ post.  I read that section to the classes and we had a really good discussion.  One guy, from Philly of all places, was a Heroin dealer in the midst of his apology to family of a guy who overdosed on his stuff.  He said his father was blaming him for the entire situation.  He couldn’t believe how mercifully you and Julia were handling the defendant,  The other guys really opened up and I can say that they all identified condemnation as never-ending, but that forgiveness keeps us connected to one another and frees us and makes us want to do better.  I had one guy ask me about Julia for 6 months until he was transferred.  He couldn’t get her out of his mind.

There were tears… hearts and minds were opened.  There are prayers coming to you and Julia from this remote local jail.  One of my favorite inmates, a young addict off to rehab, took your blog with her to Southwest Colorado.”

 

 

On an unusually sunny morning back in March, a week before Julia’s discharge from the rehab hospital where she’d been living for nearly 4 months post-accident, I was about to wheel her into the Speech Therapy session where I was about to receive the upcoming bomb:  Where memory is concerned, this is the best it’s going to get.

As God would have it, 1 hour before that, I wheeled her into the cafeteria for coffee and had an unexpected conversation.

In the 4 weeks prior, once Julia began to get language back, I’d often ask her what she was thinking.  Every time, my question jarred her and she lost her train of thought.  “I’m not sure,” she’d answer.

On this morning, before we got the grave news, as I approached her by the cashier where I left her in the sun while I got my coffee, I asked gingerly, What were you just thinking about?

“I was thinking how grateful I am that we met in heaven and chose to walk this path together.”

I wheeled her to the elevator.  I felt like I could push her wheel chair the NY marathon.  I felt ready for anything.  I told her about a quote I found scribbled on a bookmark I found in a book 2 nights ago.  I don’t even know the source.  This was it.

Whatever the present moment contains, accept it as if you’ve chosen it.

Make it your friend and ally.

This will miraculously transform your whole life.

As we made our way up to Speech, where I’d hear the news I wasn’t expecting, Julia was present and peaceful.  “Accept everything as if I’ve chosen it,” she repeated to herself on the way there, “I feel like that’s going to change my whole life.”

Accept everything as if you’ve chosen it.  We’ve been operating on that mantra since.

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JFB – MONTH 9: Words From Bo & Julia, Sentencing, and Our New Normal

Above:  Julia gets energy from trees.  She was identified at the accident by the tree tattoo on the back of her neck.

 

JULIA’S 17-YEAR OLD BROTHER’S COLLEGE ESSAY

We’re down by two with five seconds left.  My teammate in-bounds the ball to me, I check the clock, take two dribbles, then shoot the three.  The ball is in the air as the buzzer sounds. Swish!  I score and we win the biggest game of the season.  My teammates descend in jubilation.  At that moment, I couldn’t imagine life could get any better.

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After the celebration, we head to the locker room.  My coach beamed about our performance, his excitement for the future palpable.  I went to change, and checked my phone.  5 missed calls from my mom. 5 missed calls from my dad.  A text from my dad: “EMERGENCY CALL ASAP”.

Both my parents were unable to attend this game because my mom was down the shore with my Grandmom, and my dad was out to dinner for his birthday.  When I called back, my dad, in a wobbly voice said, “Julia (my sister) was hit by a car. We don’t know if she’s going to make it.”  She was in one hospital being airlifted to another.

What I would learn later is that my 20-yr-old sister was walking across her college campus to meet my cousin when she was mowed down by an impaired driver.

I dropped my phone in complete shock.  I couldn’t comprehend it.  I had just gone from an all time high to an all time low in minutes.  After I got my emotions under control, I picked up the phone and finished the conversation. I called my mom immediately.  She just told me not to worry and that everything would be alright.  That did not make me feel any better though, because my mom always looks at the positive side of any situation no matter how bad the circumstances.  I had so many emotions coming so fast that I thought I might pass out.  I couldn’t stop crying.

That night, and the ensuing days were the hardest of my life.  I couldn’t sleep from stress and worry.  It was difficult to eat.  I didn’t want to talk to anyone.

When I got to visit my sister, I felt a small sense of relief.  She was in critical condition, but I could see that she was safe.  After I saw her that day, I was able to sleep and eat a little better.  

I hoped after that, things would get better.  They only got worse.  It was extremely hard to focus at school knowing my sister was enduring painful surgeries daily to repair her.  My grades started dropping as did my basketball season. The smallest tasks took extreme effort.

I realized I had two options:  I could continue to let the situation with my sister get the best of me, or I could persevere through and turn it into a positive.

To do this, I turned to my faith.  I started going to church more. I prayed constantly.  Slowly but surely, everything started to turn around. My grades started to pick up again, and I started to play better in basketball.  My faith in God made me stronger. The expression, “Everything happens for a reason”, that my mother always begged me to embrace, kind of released me.  Everyday life would still be challenging every once in a while but every time that would happen, I would go to church and pray, and that would make me feel better again.

This not only made my life better but it turned me into a kinder person.  I suddenly found myself helping people who I would usually never help before.  This experience affected me in many ways, first bad, but then, in the end, good.  

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My sister survived.  She is only a portion of herself.  But, 8 months later, she is slowly getting better everyday.  I don’t know if she’ll ever return to who she was. I am just grateful she is here.

My sister Julia’s accident was a life changing experience for me.  I’m naturally an introvert. My own thoughts are home base.  Expressing my feelings is uncomfortable.  I’m smart and I’m athletic, but much to my Social Worker mother’s dismay, I don’t have what she calls an “emotional vocabulary”.  Perhaps that’s owing to my parents’ contentious divorce.  My first thought is always what’s best for others.

Julia’s life-threatening accident this year made m e learn what true stamina is and that what’s inside you is sometimes bigger than you are.  It drew me out of my shell to connect with people on another level which I believe will help me for the rest of my life.

After seeing the perseverance she and I were both capable of, plus the connection with God and with others this experience fostered, I can truly say I am better person.  For this I am grateful to God… and to my sister. Thank you, Julia.

 

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Bo is right.  Julia is still only a portion of herself.  But the best portion.   After 5 months of 3 day/wk Physical Therapy (where they work on her lower body), Occupational Therapy (where they work on her upper body) and Speech Therapy (where they work on her memory), she has moved up to 4 days of PT because walking is so difficult.  After a number of non-invasive attempts, her foot still turns in and her ankle rolls.  We’re looking at surgery sooner than later.

She extends her left arm behind her when she walks, for balance I assume.  Coordination, range and strength on her left side is about 60%.  Things like scratching her back, shaving, or tossing a horse shoe are difficult.

My friend Summer recently asked me, “How are you really… no lollipops and rainbows!’

NO LOLLIPOPS AND RAINBOWS

When you focus intensely on climbing a mountain, all you see is the summit.  Not the terrain beyond it.   A visual pinnacle for me was imagining Julia dance at her cousin Greg’s wedding in July.  I dreamed of this when she lay unconscious at Jeff hospital, while staff were unsure she would wake up or ever walk. (Even though I was sure of both.)

As the wedding approached, I heard the phone ring.  After 10 minutes, Julia mosies in, “Gregory asked me to read at his wedding!”

“What did you say?”

“What did I say?  I said, ‘I’ll try not to sing it… I’ll try not to rap it… I’ll try not to be dancing when I do it!'”

 

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Above:  My sister Susan, her son Gregory and Julia.  The pinnacle of my dreams

 

This wedding followed 2 other boisterous family occasions this summer:  One grandmother’s 80th birthday, one grandmother’s 90th, both combined with her 21st.

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Bastian celebration: Cousin Elise, Julia, Cousin Jeannie and Bestie Nina

 

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Gran Furey’s 90th and Julia’s 21st Birthday Celebration

 

Mid-August, when the fanfare died down, her brother, she and I had a quiet visit with my mom down the shore.  It was then that the terrain behind the mountain, that I’d not allowed myself to see before, came into view.

Walking the 2 blocks to church was difficult.  Conscious was I of the people behind us on the sidewalk.  I beckoned them to pass us.  Walking up to Communion, people nervously moved out of Julia’s way.

Moving through a restaurant is challenging.  At breakfast after Mass, I ran into a school mate I often see in the summer.  He didn’t recognize Julia.  He doesn’t know about the accident.  I reintroduced them.  He was confused.  I was uncomfortable.  The waitresses moved uneasily around her.  I excused us, politely.

It was a beautiful weekend but Bo went to the beach alone.  I’ve been to the beach once this summer – in May.  It was disastrous.  Julia can not walk on the uneven surface of sand, I discovered.  By the end of August, now that her brain and bladder are communicating better, she gets up through the night to use the bathroom.  This means removing her intricately strapped sleeping cast and lacing up her sneakers.  Just to walk across the hall.  Nothing comes easily.

Without frustration, Julia struggles mightily with memory.  This affects every facet of daily life.  She’s best talking about the big questions of life:  Literature, Philosophy, History, Natural Science, Politics, Religion…  On these topics, her cognitions are as sharp as ever.  Small talk is not in her wheel house.  She can discuss Quantum Physics but not answer her therapist on Monday morning when she asks, “What did you do this weekend?”  She barely vaguely knows.  She guesses.

 

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She’s as interested in others as she’s always been and has many questions she wants you to answer.  When she asks you about your life, when she reaches her hand out to you, when she hugs you, she means it.

Her love of film and Netflixing has not returned, unfortunately.  She can not sustain  the plot lines.  5 minutes into any show, she loses interest and asks me if I want to play Backgammon.  She reminds me, if I hesitate one second, that it’s my turn.  She has laser focus with cards, dice, scrabble, etc.  She beats me at every game.  If I took her to AC, I could pay for her therapy.

Everyone asks her when she’s going back to school.  She’s been talking this summer about auditing classes at St. Joes this semester.  I say, Let’s aim for next.  This week she started a class at her boarding school Westtown with her teacher Kevin who has become a family friend.  The class is World Religions.  Baby steps!  In Kevin’s words, after her 1st class on Tuesday:  “She’s a rock star…  Inquisitive, attentive, engaged, and humble.”  Thank you, Kevin.

 

LOLLIPOPS AND RAINBOWS

The most important thing is this:  Despite what I’ve written,  a more joyful, peaceful kid you will never meet.  That’s the God’s honest truth.  Don’t ask me how.  She smiles and laughs constantly.  5 times a day she reaches for my hand and tells me how happy she is and how grateful she is to be with me.  She says, “Even though I wish I was in school, I feel like being around you I learn even more.  How lucky am I?”

She responds to everything that’s suggested, no matter how unsavory, “That’s a good idea.”  When I sing the Mary Poppins song, Everyday’s a Holiday With Julia (Mary), I mean it.

Playing a game the other day, where she had to name a “glowing moment”, she thought and said, “I guess I’d have to say, when I made the decision to go to St. Joes.  You know, because it worked out so well.”  I just looked at her, realizing she was serious.  This is “choosing ones attitude in any situation.”

 

The man who drove unsafely down City Line Avenue on December 13th, blew a red light and hit my daughter, was sentenced earlier this summer.  He was charged with 6 counts, 3 of which he pleaded guilty to and struck a deal, avoiding trial.  His sentence would be a minimum of 3 days; a maximum of 6 months incarcerated.

The first time I broached the subject of the driver with Julia was after his arraignment back in February.  I had to explain why I was not with her that morning..

I will never forget her response.

“You’re not going to break my heart are you?”

Do you mean that the driver might get in trouble?

“Yes.”

I understand, Honey.  But he did break the law.

“But it’s not even like I’m that hurt.”

I just looked at her.  Bed-ridden and unable to walk.  Unhealed hole in her throat from a tracheotomy.  Feeding tube protruding from her stomach.  Angry scars all over her head jutting through her crew cut.  It’s not even like I’m that hurt. 

 

THE DRIVER IS SENTENCED

 

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“The victim was taken to the hospital in critical condition.  Giddings stayed on the scene, but was arrested for suspicion of DUI. Police also found what appeared to be marijuana in the vehicle.

He has been charged with Aggravated Assault while DUI, Simple Assault and related offenses.”

 

I was alone in the court-house the day of sentencing.  I’d wanted Julia to attend.  I thought it would be good for her, the perpetrator, the judge and all involved to hear from her directly.  She was at her dad’s that week who disagreed.  She prepared a Victim’s Impact Statement instead.

I encouraged her to be as blunt and honest as possible, considering only her feelings, not his.  There is a time for forgiveness, I said, but first there is a time for people to embrace truthfully the effect of their actions.

She prepared the following statement:

“I was a sophomore in college when you hit me.  Learning is my greatest passion.  Now it is one of the things I have the hardest time with.  That is tragic to me.  This is something invaluable that you took from me when you hit me.”

We gathered at 8:30 AM, to a full court room.  As the hours wore on, without the judge, who turns out was at Fox Chase with his own wife, the court room slowly cleared until it was just the driver, his wife and me.  4 hours later, the judge finally arrived.  By that time, the driver, his wife and I had exchanged many words.  “We pray for your daughter everyday.”

When I took the stand, I read Julia’s statement.  I explained, unvarnished, what the last 6 months had been like.  I said, we are people of faith.  “We do not wish more bad to come from an already bad situation.  I said Malchijah is not the first person to try to beat a light, myself included.  Malchijah is not the 1st person to drive when they shouldn’t have, myself included.  Take a father away from his newborn does not serve Julia or change anything, except for the worse.  Rather than languish in a cell for weeks, I have other ideas.”

If you keep reading, it will sound like I asked for clemency.  This would be wrong.  I’m no saint.  I leave that to my 3 sisters, my mom and my daughter.  How I got tossed into this mix is anyone’s guess.  When it comes to behavior and behavior change, I am a realist.  What I asked for was Restorative Justice.

 

RESTORATIVE JUSTICE

5 years ago, needing CEU (Contin Ed) credits to keep my license current, I found a convenient 3-day conference in Harrisburg called “Restorative Practices.”  The headline said it was about an alternative way to treat adolescent offenders (bullies to murderers) that was more effective than traditional punishment.

The focus was on decision-making and amends.  In the research, they found that punishment was doing nothing for the victim.  Or the community they’ve injured.  Certainly not rehabilitating the perpetrator.  Punishing people satisfies our own blood lust.  There’s a place for that.  But it makes the perpetrator more punishing toward others.  More loss.  Whose gain?

Our correctional facilities aren’t correcting.  That’s why there is so much recidivism.

The Restorative Practice approach is about approaching punishment in a more productive way.

  4 Questions are asked to people who offend:

  1.  What were you thinking when you did it?
  2.  What are you thinking now?
  3.  Who are the people injured by your actions?
  4.  How can you make amends?

Beyond those principles, there was instruction on a new model of decision-making.  At the end of the first day, the instructor asked the 30 students if someone was willing to volunteer a dilemma they were struggling with.  Personally or professionally.  That way we could do the practical lab work of the theory we were learning.

Crickets.

I raised my hand.

Julia, at the time, had just arrived at the high school she’d dreamed of for years.  A “prestigious school”, quoting former Vice President, and alumni, Joe Biden, in an Oprah interview.  One that her father and 4 siblings attended.  That all 3 of her mother’s brothers attended, along with her mother.  Where 2 uncles met their wives.  Where her father met his.  Where the headmaster married her parents.

She had high hopes.  Not only because, after years of all-girls private school, was co-ed.  But because she saw herself coming into her own there.  At Orientation, she joined every club possible.  Even one she was supposed to be gay or lesbian to attend.  Julia didn’t realize this until the 2nd meeting!  I still laugh at that story.  Her innocence reminds me of my mother’s.  Like I said, between 2 saints, a sinner like me got sandwiched.

It turned out to not be a fit for Julia.  Homogeneous, compared to her multi-cultural interests, she found herself lost in cafeteria conversations about make-up and boys.  Being the only Freshman on the Varsity basketball team was lonely.  The fact that she started made it worse on her.

She didn’t have the chameleon-like ways of both her parents.  She wasn’t cut out for twisting herself into a pretzel for others like we did.  Her joie de vivre was slipping away.  What do I do?

Should a parent push a kid to hang in there, make the best of it, as we have all have to in life, eventually?  Or, encourage her to forge a path she is more aligned with?

If I don’t insist on her hanging in there, will it teach her to bail the next time things get tough?  Or is this her Robert Frost moment; where the hardest choice is the road less traveled?

Julia went on to transfer to Westtown boarding school and we both consider it among the best decisions of her life.

How is this relevant, you ask.

After the 1st day of this 3 day conference, I took her out of school to attend the next 2 days with me, to her dad’s disapproval.  She says she got more out of it than 6 months in school.  5 years later, as she lay in a hospital bed while we discussed our approach toward the driver who incapacitated her, the lessons of that conference came rushing back.  (Again, my mother’s expression:  The twisted finger of God…)

The maximum 6 mos. The easy lay-up was push for that and maybe get 3,  being the only one in the court house for 5 hrs I’m the point guard.  Our families have to trust my court vision.  I don’t intend to let them, or Julia, down.

Malchijah spent some time incarcerated but not 6 months.  Instead, he and his family are compelled to read this entire blog.  He is to write a thoughtful response to it, to you and to I, in this very blog.  He is to demonstrate that he appreciates the full impact of his actions not only on her, but on our entire community.  He is, after that, to meet Julia, myself, her dad, and any of our family members who are interested in hearing his apology.  He is to tell us his ideas of how to make amends.

I understand if this isn’t satisfactory to interested, loving, supportive parties. I respect that.  In the end, I need as much of my energy on a daily basis to get this girl better.  I’ve no disposable energy for anger and resentment.  Forgiveness is 4 times as powerful and healing as vengeance.

Thank you for understanding.

 

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Julia, you recently wrote on Caring Bridge that you are grateful.  What are you grateful for?

“Well, I’m only half-blind.  (pauses)  I could be totally blind.  How lucky am I that it’s my left side that’s hurt and not my right..?

If you think about it, that could have been anyone who happened to be crossing the street that night.  I have such a strong support system.  I’m just glad it was me.”

Some people will think that kind of attitude is unseemly.  Or a put-on.  Summer would call it lollipops and rainbows.  If I print that, people will think we’re religious nuts.

(Laughs) “I guess there are worse things than being known as a religious nut.”

What do you think the purpose of your accident was?

“Dan’s sister said it was for connectivity and healing, didn’t she?”

She did.  What are your personal goals?

“I just want my memory back so I can learn.  I don’t mind if I walk this way forever.  I just want my memory back.  (pause)  You said we’re going to write about this and speak about it to help others, right?”

Yes.  We already have.

“You’re right, we already have.  Let’s keep going.”

 

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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

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.