Our new normal

We're back in Indiana, safe and sound, from our visit to NJ. We had a lovely visit with lots of time with family and friends. Patty hosted a belated 50th birthday party for John:

John and Jackie with the cakes she made for his 50th birthday party

John, Nora, and I spent a few days at Ocean City with Mom & Dad and Jen & Andrew. The water was calm, the entry was gentle, and watching Nora frolic in the water was magical:

Back on the beach... Ocean City, 8/5/13

As of Monday morning, the 2013-14 school year has started (for John, at least), and we're firmly into our new normal. John is back in the classroom, teaching 2 classes of junior English. John's colleagues welcomed him back by inviting him to throw out the first pitch at the annual back-to-school student-faculty softball game:

John out on the mound (wearing the black t-shirt),
ready to throw the ceremonial first pitch

Tomorrow is the first teaching day for John, we're in the throes of sorting out Nora's clothes (and filling gaps), I'm finishing up the last few minor tasks on my summer to-do list. Last year is officially over -- and we're going to take a break from the blog. We're happy to chat via phone or email whenever you want an update; we're eternally grateful for your love, prayers and support over the past year. But we're into our new normal, and it's time to just live it, not record every moment of it.

John's angel

I've been thinking a lot recently about the one person I haven't been able to thank, the man who came up to us while we waited in front of the life guard stand for the paramedics to arrive. He came right over, said, "I'm a heart surgeon -- actually, I work in trauma" and reached for John's left wrist. He stayed with us the whole time we waited, moving back and forth from side to side, tracking the pulse in John's arms. When the paramedics came, he talked to them a bit, and then as they carried John off the beach, he told me that John had an injury in his spinal column, probably a herniated disk, and that an MRI would be taken at the hospital to confirm it. And he told me John would be OK. I remember asking him to repeat what he's said he thought was wrong with John, so that I could tell them at the hospital, and he told me not to worry -- the doctors there would know what to do.

When I went back to the island on Wednesday to see Nora and for a shower and clean clothes, I went down to the beach for a minute. I knew that if I didn't go then, I'd never be able to step foot on sand again, and I just wasn't ready to give up on that. And I found the nurse who'd been there with us (Nora had played with her little girl that weekend), I found the guys who pulled John out of the water, I found a cousin of one of the lifeguards who'd been on duty when John got hurt. And I got to thank them all for saving his life, a profoundly powerful moment. But I couldn't find the surgeon. And no one remembered ever seeing him before. Odd for that stretch of beach. Certainly he might have come down just for the day and happened to pick the 81st St. beach. But you don't usually see that -- people usually come for at least a whole weekend, and we recognize each other. And no one remembered him...

Maybe I'd just let him fade away in my memory, but for a crazy little detail: he spent his time going back and forth between John's wrists, holding his fingers on John's pulse. And he spent about twice as much time on John's left wrist (his non-dominant side). And throughout recovery and rehab, his left side has responded earlier and stronger. For while, it even looked like he'd be switching to left-handed. And now it's his right shoulder that troubles him.

What am I stumbling my way toward? I have thought about him a lot in the past year. And I always come back to the way he introduced himself: "I'm a heart surgeon -- actually, I work in trauma." He was John's angel sent to take care of him (and me), I believe. He took care of our hearts during this trauma. This was the beginning of the grace that has healed John and sustained me and Nora and the rest of our families throughout this ordeal. Thank you, our friend...

July 30, 2013

We've been in NJ for a few days and we're still processing thoughts and emotions. But for now, to mark the one-year anniversary, some thoughts....

We saw Dr. Radcliff, John's surgeon, who was THRILLED with his progress. Dr. Radcliff said it best: "John, you've had a miraculous recovery!" He noticed the neurological effects when he examined John, obviously, but was very pleased the amount of function that John has regained.

Here we are, to quote my husband, "back at the scene of the crime":

A year ago today, our lives were forever changed (to fall back on a cliche). But a year later, by the grace of God, John is here with us, and he was able to share in these other life-changing events with us:

• Nora started school and had a fabulous kindergarten year.
• I learned how to make carrot cake (dangerous!).
• Nora learned how to pump herself on the swing.
• We learned that laughter goes a long way toward helping you cope with the unthinkable.
• Nora learned to read! In the past few days, she read her first 100+-page chapter book to herself.

And tonight we will have a quiet evening together, with dinner at Beau Monde (where we had our first date) and then we'll stay at a nearby B&B (a mini second honeymoon).

Random observations/notes...

• Although he wasn't here for her first day of school, John was very much present for Nora's moving up ceremony and last day of school (a half day and we took her to a new cheese shop/deli in town for lunch):

  

  Our new 1st grader!

• I never realized until after John's accident just how often the helicopter lands at Memorial Hospital (a Level II Trauma center, 3 blocks from our house). You can hear the chopper plain as day throughout my house and yard.
• Wednesday night, the tornado sirens went off just. after. we. left Nora's room... but the good news is, we got to do a drill and we had our first time getting everyone to the basement since John's accident. We made it in 3 minutes (I think -- I wasn't actually timing us), Nora did everything we had outlined for her when we discussed it a few weeks ago, we remembered everything, and the cats let me catch them (a minor miracle!). The great news: no tornado, so just some extra reading time.
• Nora is loving being home for the summer with Ma and Pa -- we're playing an extended game of Little House on the Prairie. And somehow, she still finds it exciting, 2 weeks in, when I take her to my office three times a week while John does his exercises at Rolfs.
• John and I are catching up on movies we've missed. Two we've enjoyed so far are Butter and Lincoln (very different stories with intriguing thematic overlaps).
• And with the blessing of John's doctor and PT, he's tried driving in a parking lot. He's able to maneuver from the brake to gas pedal (and more importantly, back again!) and he can control the wheel, so now he just has to adjust to new blind spots and get acclimated to driving in traffic.

Most importantly, Nora and I are planning to spoil him silly on Sunday...

June 1, 2013

The 10-month mark came and went without fanfare on Thursday (I was caught up in a work deadline which I actually made, with half a day to spare!), but today we joined another celebration: our neighbor's son (the one we passed the Lourdes water on to) has been home from the hospital for the past month or so, and today they had a welcome home party for him. It was great to see him outside of a hospital setting and even better for Nora to meet him since she's been asking God to help him heal for the past five months. M. even graciously posed for a photo with us (and his mom's ok'ed me posting it):

John continues to do his exercise routine at the campus gym three times a week. Nora and I take him for an after-dinner walk a couple of times a week, as well, and he's built up enough stamina to make it around our block (which is actually half a mile).

I'll close with an update from Nora: "Daddy is doing good. He's walking faster and a lot better."

May 6, 2013

Today, on the invitation of one of the health teachers at St. Joe's, John visited some of the sophomore health classes who are currently studying the nervous system to talk about his experience with his SCI. Since I'm his chauffeur, I volunteered myself to join him, and we spent the morning talking to the young women about his accident and what the rehab was like for him, for me, and for our family.

What a wonderful experience this was! The students listened avidly and asked thoughtful questions of us. And in all of our years of teaching, this might have been the first time we saw each other in action in a classroom and got to "teach" together. For me, to see John before students, interacting with them in front of a classroom, made me very happy.

It was also a privilege to explain to them that John's recovery has been miraculous and to share how comforted we've been by our family and friends in NJ and our community here in South Bend. Knowing that our experience serves as a small model for them, a witness to the blessings that God has bestowed, offers us another small piece of healing.

April 30, 2013

Spring has sprung... We sent Nora to school in shorts today (well, really a skort, 'cause the girl's just got to have a skirt on). I wore a sundress to my last day of classes. And I had two important realizations as I left O'Shag for lunch: 1) I did it -- I managed to teach all my classes this year (and even find moments of joy and peace in my classroom) and this year's all over but the examinating and grading; and 2) today marks the 9-month anniversary of John's accident.

 He's been discharged from therapy, as they made all the progress they could there. He has a strict exercise routine that he has to follow to avoid regression of the function he's regained. There are physical limitations that we're all three of us learning to live with, each in our own way. Lots of questions about the future are wide open right now. But we know some definites. He is here with me and Nora, right where he belongs. And when I remember where he was 9 months ago -- paralyzed from the neck down, unable to swallow, and barely breathing on his own, I lose my breath. So tonight, as he eats the dinner I will cook later on and breathes in the fresh spring air, we will pause to thank God for the blessings embedded in the journey of the past 9 months.

3/26/13

We saw John's South Bend neurosurgeon for a follow-up today. His latest set of x-rays confirm that the fusion is holding strong, and the bone is growing very well around the hardware. At this point, John won't need more images taken unless new problems present themselves, though he'll always need to be protective of his neck.

The doctor also tested his reflexes. Consistent with central cord syndrome, the reflexes in his hands (measured at his finger tips) are worse than those in his legs (measured at his knees).

The spinal decompression is complete (that was the objective of John's surgery -- removing the C4 disc prevented further injury to the spine and we were waiting for the swelling to completely subside), and there's no reason to expect further damage to his spine. He has hit a plateau in his rehabilitation, and at 7 1/2 months out, we have a good sense of how much function he is going to regain. While the recovery has greatly slowed at this point, changes are still possible for up to three years after his accident, though, and he has to maintain a strict exercise schedule to not lose his hard-won gains.

Our next appointment with this doctor in July (at the one-year mark).

minor housekeeping note -- the comments are fixed

Hi everyone -- several of you have told me you can't comment on the blog posts. I've finally figured out how to open up comment to everyone, not just those with gmail addresses. So I *think* you can comment if you want (not that you have to -- but we love reading them!).

3:1 (aka 3/20/13)

At one point in the long weeks leading up to Christmas, when John had sort of adjusted to being home and was into the rhythm of therapy every other day, but felt like he wasn't seeing fast enough progress in returning to feeling like himself, his OT told us the 3:1 rule. It takes 3 days at home, she explained, for every one day in the hospital to return to your pre-hospitalization state of health. At the time, I was NOT interested in hearing a projection that far out and did not calculate when that would happen (this was probably when I heard the radio DJ say something about how Robin Roberts was in the hospital for 4 weeks and they couldn't imagine being in the hospital that long -- and I swerved as I yelled, "Try imagining more than twice that long!!!"). Sometime in January, when we realized that John wasn't able to return to work yet, I did count out those days.

And today we’ve hit that special 3:1 day -- he has now been home three times as long as he was away in the hospital.  Looking at his face, he looks like he's back to where his general health was when he had his accident. This is not to say that he's close to completely recovered -- that path still winds ahead of us. But he looks like himself. 

At this point, he has to keep up his amazing efforts at rehabbing to recover as much pre-accident strength as he can and to train more muscles to regain function. He needs to build up stamina -- he still sleeps several hours during the day, in addition to a full night's sleep -- because he still suffers from significant fatigue just from his ADLs (activities of daily living), and he deals with pain on a daily basis. And he has to learn to live with the differences between where he gets and where he was on July 29th, including the side effects of the SCI that are most likely permanent, like clonus:

a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyperexcitability). … clonus causes large motions that are usually initiated by a reflex [from the ubiquitous Wikipedia]

and tremors in his hands.

But we are blessed and we know it: the destination we are headed toward is so much  better than it could have been as to be scary -- it is a miracle that is daunting to be worthy of. A sacred thought to ponder as we enter into the days leading up to Good Friday and Easter...

So I'll close with a wish for you all: Happy 1st day of spring! May it bring you all the rejuvenation you seek.

Let's be a little crazy, shall we?

So we picked Nora up from school this afternoon at 5:20 and instead of heading straight home to put dinner in the oven, we stopped to get some of these:

to celebrate the fact that John's been discharged from PT for his shoulder!!!! He still has therapy 3x's a week for his legs/walking/balance/gait-training, but the secondary issue with the shoulder in under control enough that he can do the exercises on his own. Whoo-oo!

A lovely reward for very hard work done well and with dedication, we all agreed.

March 5, 2013

I think it's time to teach Nora that old saying, "March comes in like a lion, goes out like a lamb"... We had what I'm hoping is the season's last snow storm today. We even got enough snow for Nora to get a snow day.

John and I ventured out for his follow-up with the orthopedic surgeon to check on his shoulder. The doctor's report: he's made nice progress in the reduction of his pain and the increase of active motion. At this point, he can move his hand to behind his back (which I hadn't seen since before his accident). He still lacks complete elevation, so he needs to continue to use his pulleys at home to stretch his shoulder and work on increasing his range of motion. The doctor told him that he thinks it's a reasonable expectation that he'll eventually have a shoulder he can use fully pain free. Apparently, there's a one-to-one correspondence of pain and motion -- the greater the range of motion he gets back, the less pain he'll have. So for the next four months, he needs to be particularly vigilant in stretching it out since adhesive capsilistis has a tendency to flare back up in the first few months after getting it under control; the exercises that he's been doing will keep his shoulder flexible enough to fully heal and hopefully ward off a relapse.

February 20, 2013

After driving through over an hour of heavy snow (like 1/2"/hour, 20-30 mph winds heavy snow), we had a lovely day in Chicago for John's check-up at RIC. Blue skies and a brisk (OK, frigid!) wind -- but not a hint of the snow we'd left behind somewhere west of LaPorte. But enough of the weather report -- I'm guessing that's not what you're here for! (Funny side note, first: when I went out to reshovel the walk before leaving -- less than 2 hours after shoveling it to take Nora to school -- and saw how heavily the snow was still falling, I triple-checked the weather report online, and it swore to me that it was not snowing in South Bend. The snow on the porch was awfully fluffy and fake looking -- maybe it was my imagination?)

And now for the update you're skimming for:

Dr. C continues to be very pleased with John's progress! John's strength is slowly returning, and for this stage of the game, it's very good. He can now go against gravity with most of his limbs (yay!) -- it's so cool to watch them test for this. The doctor has John lift his arm, for example, and then John has to resist having his arm pushed down. It's amazing to see the mix of very high tech and very low tech techniques that have been used over the past 7 months, from the fanciest treadmill I could imagine to the doctor trying to squeeze John's pinkie and pointer fingers together. His discharge from OT is now official, reflective of the progress he's made in rehabbing his hands. He can almost spread his fingers completely now.

The cold does continue to challenge John. After lunch, we walked the 4 blocks from the restaurant to the hospital (I had dropped him off on the way in and parked the car), and that bright blue sky was deceptive: it was COLD! And Chicago was living up to it's nickname. And the wind and cold made the walk rather difficult for John. The good thing is, we know this will happen and we can plan around it. The bad thing is, we live in South Bend -- as I say to my students when they moan about the wacky weather and the cold, "Welcome to South Bend!" But winter (and the cold) can't last forever....

We also had the wonderful pleasure of stopping by the pediatric floor of RIC -- our neighbor's son is now rehabbing there. It was a privilege to witness for him (and his family) the powerful work that the RIC team can do. Please continue to keep them all in your prayers as well. Rehab is a long journey, and the more the merrier on the prayer front!

February 18, 2013

John sees his physiatrist later this week for a general rehab check-in, and then the orthopedic surgeon in two more weeks, but for now, a short update:

After more progress testing today, OT has decided to discharge John (pending the doctor's approval). But not so fast if you're thinking that means less therapy! For a few weeks at least, John will do double PT sessions so that they can continue to work on the range of motion exercises for the shoulder that the orthopedic surgeon prescribed (which they've been doing) AND do more legwork like gait training and balance work (which had been a little neglected in the more immediate need for the shoulder work). I think this is officially the hardest physical thing he's ever done -- but he's getting inspiring results!

January 30, 2013

A double milestone day...
it's the 6-month anniversary of John's accident AND his birthday (I won't give the year away, but if you look closely at the balloons from Pat and Fred, you can figure it out...)

John celebrated with:
* a trip to St. Joe's, where we joined them for the all-school Mass celebrating the beginning of the 2nd semester -- and John enjoyed having the students serenade him with "Happy Birthday" and getting a fun bunch of balloons --  our house is very cheery now, just in time for the temperature to drastically drop again.

* a therapy session in the pool (does this count towards his celebration???), where he got a great workout. On the therapy front, we're pleased to report that his shoulder seems to be improving since the shot.

* dinner at Fiddler's Hearth.

* cake and presents (and we're hoping a quiet evening -- read: a sleeping 5-year-old -- will follow shortly...

 

 

I have moments where it's still hard to process that this has happened to John, but I watch his fierce determination to continue rehabbing and building up his strength, and I find myself grateful for this opportunity to witness his strength and understand his love for us in such a profound way. While ADLs (activities of daily living) are a daily challenge, I am confident in his ability to meet them with grace. I can't imagine that I'll ever be thankful that wave knocked our life around (literally and figuratively), but I am grateful beyond words that we are all still standing... thank you all for your love, prayers, and support over the past few months!

January 17, 2013

Meeting the new doctor: check
Telling John's story again: check [I have learned more about the spinal cord than I ever thought I would know...]
Hearing another doctor say his progress is great: check!

All in all -- a successful doctor's appointment. And, oh yeah -- we got a diagnosis for the shoulder: capsulitis. hat is capsulitis, you ask? From the ever-popular Wikipedia:

Frozen shoulder, medically referred to as adhesive capsulitis, is a disorder in which the shoulder capsule, the connective tissue surrounding the glenohumeral joint of the shoulder, becomes inflamed and stiff, greatly restricting motion and causing chronic pain.

The treatment was a cortisone shot (with a long needle -- yuck!) and more range of motion exercises in PT. So far, it's feeling better -- and John got out of bed with minimal pain Friday morning!

January 14, 2013

Just when I was starting to think we'd maybe hit a plateau -- and John was starting to be bored by therapy -- he had a wonderful PT session today.

I was working in the waiting room and saw him and Marilyn pass by out of the corner of my eye. John was sort of dribbling a soccer ball (definitely pushing it down the hall with his feet), as they walked from the treatment room out to the lobby. And then this weird thud -- thud -- thud noise interrupted my proofreading. So I wandered out into the lobby, and saw my husband kicking a soccer ball against the wall! He may not be ready to exercise his 4 years of eligibility on the ND soccer team (yet!), but he was able to keep his balance while he kicked the ball a few times! Then he got to hit a tennis ball with a racket for a couple of minutes, which gave him the chance to work on side-to-side movement. Again -- far from ready for a real court, but by summer time, he should be able to play with Nora, a thought which makes my heart burst with joy and gratitude -- and pride in his determination and hard work.

Not surprisingly, he topped off this morning's therapy session with a good long nap this afternoon.

He has hit a small speed bump in the recovery road -- his right shoulder and arm have been bothering him for a long time, and although OT and PT have been working strengthening the muscles all around them, both Angie and Marilyn think he has tendinitis in the shoulder. Since iontophoresis and taping it aren't really helping, he needs to see an orthopedic doctor to see if there's an underlying issue causing the pain. So we get to meet another doctor on Thursday.

Sharing the wealth, 01-01-13

While John was still in ICU, our brother-in-law's sister-in-law's mother (did you follow that?) gave us a bottle of Lourdes water that I used daily to bless John and his body. The bottle flew with us to Chicago, and stayed in the drawer in John's room at RIC, and I bleesed him on each visit.Although the feel of the cold water was at times a little painful for John's senstive skin, the water's healing powers were worth it. This weekend, on the 5-month anniversary of John's accident, we passed on the bottle to a neighbor whose teenage son is fighting his own battle in ICU. And the bottle gave me another sign of John's healing: the fact that I could let it go to pass it on to someone who now needed it more than us was a poignant clue thatwe're making progress here.

A well-used bottle of holy water from Lourdes



Please add our neighbor's son to your prayers. He has a very long journey ahead of him, but the prognosis is hopeful.

Happy New Year!

From our priest's homliy today for the Solemnity of Mary, Mother of God: "The story of the Nativity is not just a story of the beginning of life; it is a story of life interrupted... In the sorrows and the setbacks, in the joys and the glorias, God was with Mary always." What a comforting message as we enter this new year.

Last night, we celebrated how far we've come on this journey together with a small reminder of the way we spent our first married New Year's eve:

And we toasted our love for each other with our wedding flutes (given to us by our dear friends from Chapin). And we even made it up til midnight, saying a bittersweet goodbye to 2012. We made it! Tomorrow we'll look ahead at the hard work that still awaits John, but for now we pause to savor how far we've come.