Mind the Speed Limit: A “High, High Hopes” Update from the BOH

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Hello,

It’s August, and since the last update, the BOH has cruised through the summer with “high, high hopes,” as the current song from Panic! At the Disco goes. I will “try” to be brief, making as many stops as we “shoot for the stars” along the way.

Melissa’s fall schedule: speaking of panic, I put out a call for hope and prayers on Facebook the other day as my credit load dipped below 12. That number is the magical one to maintain health benefits. After the axe fell – and it’s par for the course as all MNSCU schools are now low in enrollment – I took a deep breath, found my center, and hoped for the best. Within the next day or so, I landed two classes that put me fully in the safety zone for benefits. What’s really interesting? The 2-credit College Success Strategies course I will teach at MCTC needed an instructor with a reading background. So, “I didn’t know how, but I *always have a feeling” that these stuff works out. (But at least Panic! ensues.)

Rachel’s OT/Speech/PT: Right now, Rachel’s right hand is in a cast, but please, don’t “panic.” She is using a procedure called “serial casting.” During a successful round of phenol/Bo-tox shots, the medical team put her right hand into the plaster mold: the process incorporates a series of four casts over the space of four weeks. Each one puts her right hand into both a prolonged stretch and a new, neutral position. She is tolerating it well, but good, happy, and healthy distractions are a must. Enter EVELYN! This girl’s got “high, high hopes” alright…

Detour: Evelyn is a constant source of energy, joy, and ideas. Her energy is infectious, filling my tank to keep going myself, and she is game for damned near anything. (Ev, when you read this, I’ll say it for you: Language!!!) With the cast, Ev’s self-appointed role was to have a Sharpie on hand in order to have anyone and everyone sign it. Speaking of detours, since the beginning of the summer, Ev’s suggested going to a place called Cat’s Meow.

So, on Friday, we made the trek to Minneapolis and paid a visit to the “unique experience […] where you can enjoy quality coffee and tea while relaxing in a lounge with 10 – 15 rescue cats that are up for adoption!” Now this event could have been a place for Ev Rach and a kittyRachel’s own panic. She doesn’t always do well around animals, that is, beyond our own cat, Hobbes. Well, she delivered on “rewriting her own history” and was a total rock star. We all three had a wonderful time spending an hour with the kitties and striking up conversations with other feline fans.

Back to therapy: Her PT sessions are now filled with something called e-stimulation. What does this mean? It’s using electrical stimulation to “contract muscles that are weak or not functioning well” (Verywell Health). We apply it to her thighs, wait for the machine to start working, and work on stretches or sit-to-stands. We will work on gait training in our last sessions of PT too. The therapists remain pleased with the progress from the summer as a whole.

Speech: We are making lots of progress here. Her communication skills used to be just sounds, then a word repeated over and over, and now, it’s grown from 1-2 word statements to 4-8 words with encouragement and cueing.   Examples: 1. Can I have ice cream? 2. I see a bird. 3. Can you make big popcorn please, cherry on top?

Jim’s job at Stratasys: My husband procured a management position at his work. It’s garnered a small bump in pay and a big opportunity to help the company. *Apparently, he’s doing well, as accolades of Atta boys and job well done are flowing in. I’m very proud of him.

Our new “bus stop”: As I have written before, our second driveway that leads us from the bus stop to the kitchen door is akin to any skateboarder’s wet dream: it’s steep, curvy, and now dangerous given how big Rachel is getting. As our current plan sits, by October, we will put in a chair lift that takes Rachel from the main floor to the basement. Then, an asphalt company will install a place for the school bus to pull in (off the main road) to retrieve Rachel; once on the bus, the driver will pull back onto Wilshire Blvd. to continue her route.

Some of our community might know our bus driver, a delightful woman by the name of Marty. She’s coming back to help us out, even after dealing with health issues at home. I’m certain that she will be happy to see the new set up for Rachel. Every day I brought her down that driveway, I felt as though Marty and any para were holding their collective breath, making sure that Rach and I made it to the door in one piece. We’re “rewriting history,” allowing for better safety and saving *someone’s back from injury!

Grandma Kathy: My mother – a young at heart 75-year-old as of June – is a smoothly running engine of hope. Forgive me for mixing metaphors, but I often regard her as love’s headwaters, flowing to family and friends. During a three-week period in the month of July, my mother helped out the BOH big time: While I taught at Normandale from 9-12, she drove from Bloomington to Mound, collecting Evelyn en route to Grandview Middle School, where Rachel finished her day of summer school. Once there, Grandma Kathy fed Rachel and Ev as they waited for me to come from Normandale. At about 12: 45, I loaded all three girls and a wheelchair, into my van. We headed out to St. Paul for Rachel’s Lokomat session at 2. We were only late once.

Grandma Kathy made all that possible. She helps whenever and however she can. I’m truly grateful. It’s very likely that she would agree with the song lyric: “Mama said, don’t give up, it’s a little complicated.” But my mother replenishes me, she fuels me, and she loves me, so that I won’t give up. I’ll go out on a limb: she might even be a tiny bit proud of me. But I don’t wanna push it. 🙂

How am I, you ask?

Melissa: Oh, I’m fine.

BOH: That’s it? You’re just “fine”?

Melissa: Yeah, I’m good.

BOH: Aren’t you going to tell us all the things you’ve done this summer?

Melissa: Well I could—nah, I’m good. Maybe I’m just a little tired, but really I’m go–

BOH: Did you submit grades for three classes in the last week or so?

Melissa: Sure, it goes with the territory, so, no big de—

BOH: I have heard rumors that you read two big books this summer. One was about Jim Henson and the other was an autobiography about Norman Lear. You aren’t going to share that you snuck that in?

Melissa: The Henson one was an audiobook. I listened to that while driving. Technically I was multi-tasking. No big deal, really.

BOH: How about running the BOH Day Camp? That’s something to brag about.

Melissa: No, that’s something to heap praise onto Evelyn as she makes caring for Rachel so much easier.

BOH: Look, all I’m saying is that it’s okay to be proud of the work you do. People who read this blog ought to know a smidge of what you accomplish.

Melissa: Look, don’t call me “amazing,” or some kind of hero. I’m just a bus driver. I just believe better days are coming. Doesn’t everyone work this way? Besides, Jim is doing this work with me, at my side. Grandma Kathy and Evelyn too. I’m not doing it alone.

BOH: Sure, fair point, but many of the Gillette team have said that not all parents do the work and are as committed as you both. That’s a fact.

Melissa: I can’t argue that the professionals said that. I was there. The best way I can explain this is what runners say: “Slow and steady wins the race.”

BOH: Well, then we can just close this with “obey the speed limit,” right?

Melissa: And use the cruise control while driving as my mom suggested.

BOH: That’s a start.

– – – – –

Well, folks, the BOH rests now. A Blue Moon is catching the evening sunlight. All the beds have fresh linen. Everyone has clean, folded laundry. We have a clean bathroom. All the groceries are put away. I have work and health benefits when I return to work this fall. And Rachel begins the seventh grade on September 3, 2019.

Thanks for riding with us! And offering your hope, love, light, prayers, and positive vibes! You are “that one in a million!” We are cruising right along…. See you in September!

Melissa, Bus Driver – who’s “got high, high hopes for a living”

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Obey the Speed Limit on the BOH

One afternoon in June, Handy Helper Evelyn, Rachel and I were driving the BOH to an appointment. I seem to remember focusing on the road, but my mind was trying to think about too many things all at once. At one point, I looked down and noticed I was going about 70 in a 55 MPH zone. As I realized my grave error, and started pumping the breaks, a squad car flipped on his lights and pulled me over.

I was lucky, and I got off on a written warning. But this moment brought a cautionary tale to the fore, with a dash of philosophy thrown in for good measure: While I have learned many things as your trusty Bus of Hope Driver, the theme as of late is about the speed limits of life. Rachel’s recovery process is not linear; rather, it meanders like a country road. Her milestones have been scattered all throughout the eight-year journey. Often, as the driver, I want to speed the Bus to get to the next glorious vista, attraction, or goal met. It is hard to be patient.

Yet, here we are, landing safely in the middle of July. For most folks, it is filled with vacations, sports, barbeques, and any old excuse to enjoy the great outdoors. For us on the Bus, our itinerary is filled with medical appointments, therapy, summer school, teaching, and working hard at all of our roles.

This particular summer, during this particular episode of care, Rachel’s recovery offers a crystalizing Polaroid of hope. Overall, her language skills continue to blossom. Her comic timing is sharp, and her eyes are round and bright as she soaks in the sights of life all around her.

Physical therapy offers very exciting view of her recovery. For those of you new to the BOH, I’m specifically talking about the Hocoma Lokomat ®. It is a robotic device that assists patients in gait training. Minnesota only has two of these: one is at the veterans’ hospital, and the other is at Gillette in St. Paul. Rachel is a rare breed as a repeat patient. I think this is likely her fourth or fifth time using it.

This current success wasn’t happening two years ago. We had to wait to this summer for this outcome. See? We can’t speed on this journey, as much as we would like to have…Now to be fair, if Rachel is unfocused and tired, the left leg lags like a sandbag. No muscles fire, and the brain’s signal to the leg fades. When this happens, the vision of a full recovery feels like a mirage rather than reachable milestone.

And yet, with the March 22nd osteotomy and hamstring surgery behind her, Rachel’s legs are *able to pick up a stronger signal from the brain, offering some of the best steps I’ve ever seen. This video is from Friday, and I call it “Twenty seconds, twenty steps.” Look at her eyes, open and bright. Look at her calm demeanor, and look at her soaking up the supporting chorus of counting steps. Look at the straighter legs, the even, bilateral steps from both feet. As posted on Facebook two weeks ago, here’s another video of Rachel walking on the treadmill, after a vigorous session in the Lokomat.

The Lokomat sessions take place on Mondays, Wednesdays, and Fridays. On Tuesdays, Rachel, Evelyn, and I head over to Minnetonka for speech and OT.

In speech, Carrie is working on:

  • Classification (whole to parts) – Where can you find a sink, toothbrush, tub, and toilet? In the bathroom!
  • Increasing complete sentences – Here’s one sentence I teased out of her: “I want to call my friend Randall on the phone.”
  • More recall (WH-questions) – I hear these a lot: Where is Daddy? (Working overtime.) What are you doing, Mom? (I’m doing the dishes.) Where are we going? (We are headed to Costco.) What are you looking for? (I’m looking for my hat.) What time is it? What is this movie? And, the ever-famous, often asked, starting early in the day…WHAT IS FOR DINNER?
  • Naming actions or activities displayed in pictures (verbing it out). A little girl is holding a cup to her lips; Rachel should be able to read and say: She is drinking. And she can deliver said line pretty well.

Just now, I turned to Rachel and prefaced a dialogue about making a choice between popcorn or painting fingernails with the following line:

ME: Rachel, you’re going to have to make a decision…
Rachel: Uh oh!

At our last few sessions, Carrie has been happy with Rachel’s overall progress. Carrie is really impressed and pleased with how Rachel has deepened her focus this summer.

(In fact, one could argue that perhaps Rachel WANTS to focus, WANTS to work hard. Such a milestone is worthy of waiting for, but easy to lose patience while obeying the laws of recovery!)

Over at OT, we are working with a new therapist to the Gillette team, and her name is Jamee. A pint of a woman who offers gigantic hope and joy when working with Rachel. Both OT professionals – Jamee and Wendy – have always regarded my daughter as having tremendous potential.

On any given day, Jamee has Rachel working on self-care, such as teeth-brushing, cleaning-while-naming the body parts with a loofa, and putting on deodorant, AKA pit-juice! With Rachel’s tone in her right arm, Jamee offered the following idea: flipping the day and night-time splints. Oddly enough, it’s working: first, she will tolerate the switch and wears the splints for long periods of time. Second, she is able to open her right hand a little more, holding the side rail at the Lokomat, letting it rest with an open palm on her commode, and reaching up and over to her mid-line to touch a toy or pop a bubble.

In fact, one afternoon, as we wheeled her out of the Gillette lobby, Rachel took her right arm, reached all the way to her left to push the button that opens the door. I was floored with her strong effort to complete a challenging task.

In one of the recent sessions with Wendy, they worked on getting her own socks on her feet. Did you know there is a contraption for this? And in another session with Jamee, they worked on blowing whistles to strengthen the pelvic floor muscles. Why do we do this, you ask? Well, that’s because we’re “taking it to the MNGI and Urology Street!”

Ahem…Allow me to explain:

OK, so…I think you all know that Rachel’s still in a diaper. If there’s ONE thing I would sacrifice almost anything for, it’s getting Rachel back in underwear and out of diapers. Way back in April, I started making calls and asking questions about incontinence. As a result of these inquiries, we had the pleasure of meeting an urologist (at Gillette) and a gastroenterologist (at MNGI).

I don’t want to gross you out, so yes, I will be efficient – but I won’t speed! – with my words:

  • In May, we learned that she was really, really, really backed up. We were strongly suggested to jumpstart the process with an enema, but back that with Miralax. We enacted Miralax on a semi-regular basis and balked at the enema, hoping the latter would do the trick.
  • In early June, we traveled to MNGI off of Broadway in Minneapolis. We met a young, enthusiastic doctor and had an honest, frank discussion about the beauty, regularity, and momentum of poop. She recommended that we start slow, with the basics. She told us that she was treating Rachel as if she were any other 12 year old who suffered from constipation. At the close of our consultation, she requested that we get an X-ray to see if we had made progress in our Miralaxing program….We snuck in the X-ray that afternoon.
    The next day, while watching Rachel walk in the Lokomat, my cell rang and it was the doc from MNGI: Rachel is STILL backed up. She requests (sternly) that we first give her 14 ounces of Miralax over the weekend to get her bowels moving. Then, starting that following Monday, we were to give her Miralax every morning and Ex-lax each night. We have been pretty diligent on this program ever since. And her pooping has become much more consistent. I also learned this: If you’re backed up this much, the full colon exerts pressure on the bladder, thus making it challenging to control the urine. In fact, we can measure our success in this program by how many dry diapers she has in the morning, and yes, in the last week or so, she has not only been dry but voided too.
  • On July 1, we headed back to Gillette to perform a test to see how much liquid Rachel can hold in her bladder, which is 400 mils, in case you’re wondering; yes, I’m sure there is a name for this test, but I can’t remember what it is. As far as that technician is concerned, Rachel’s bladder is pretty normal, and she CAN hold it if she wants to…After that test, we visited with the nurse practitioner to discuss our progress with voiding and BMs. She told us to keep doing what we’re doing with Miralaxing and Ex-lax; while gaining control is a marvelous goal, keeping her regular is good for her overall health, even if we have to assist her. But the big billboard message she shared with us was this: This program we have her on could take anywhere from 6-12 months. Once again, I’m reminded to obey the speed limits!

Another aspect of Rachel’s growth emerged in May: she began menstruating! The pimples that pair with this are a quite the time marker. The only way is through, I suppose. But the timing here is a thing of beauty with 3/22 surgeries: On average, girls grow about two more inches after menstruation begins. (But I got a feeling her current height of 55 inches will far exceed that. Period.)

This past week, Rachel started another round of Summer School here at Grandview Middle School. She works on language arts/reading, math, and a little gait training for good measure. All reports thus far are positive, suggesting that she lives out the mantra we say while she boards the bus: “Work hard, have a positive day and attitude.”

Now, please allow me to lay out a theory of sorts: Throughout the month of May, Rachel was having a tough time in math, unable to focus. Now, she is just fine. My theory is that when you are constipated, you’re gonna have a sore attitude. This is just another reason to keep Rachel’s inner engines working.

I’m enjoying teaching a Creative Writing course and a research writing class. CW is fully online, and the other is a traditional, face-to-face course. I have also begun teaching the Summer Scholars Academy, hosted by Normandale’s Continuing Education.

The overtime at Jim’s job has been steadily flowing; he is putting in an average of 55-60 hours at his job. He is up by 3 most mornings, drinking the coffee I have (often) assembled the night before. I join him by 4. Rachel and I are in the shower by 5.

(We think sleep is for wimps.)

Just like last year, BOH Day Camp is up and running; Evelyn is our consistent ‘Handy Helper Elf.’ She intuits what’s needed and offers to do things: she opens the van door and lowers Rachel’s chair, she fills up water bottles, doles out snacks, paints R’s fingernails, and vacuums. We have had a few meals at Perkins, enjoyed Caribou Coffee, munched on stove-popped popcorn, and swung through McDonald’s. We have a list of fun things we want to do before the summer is out, such as visit the Cat Café in Mpls, enjoy root beer floats, and take more walks.

Finally, before I forget: Ev, Rachel, and I headed over to Gillette’s Phalen Clinic in St. Paul so that Rachel could get an EEG. The results of this allowed us to begin weaning Rachel off of her current medication for seizures: Lamotrigene. It will take 11 weeks total to gradually, slowly titrate off this med. I also learned that many young girls who have seizure activity on their records actually have an increase in brain waves, with the possibility of more seizure activity.

So, as I look at our itinerary, it’s pretty full with therapy, school, BOH Day Camp, and more. Fall semester starts on August 26, and Grandview Middle School starts on September 3. My prayer is that I keep the BOH free of speeding tickets, full of fun, and grooving along to each new milestone.

Until August, I bid you a safe, careful summer!

Melissa

 

The Heartbeat of the Bus…keeps ticking

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My brother wrote a song for the Big Wu about a racing heart that ticks when the love of your life is near you. Of course the irony was on him, given at the age of 30, he had open-heart surgery to correct a congenital heart issue. Did he ever wonder if he was “Left for a goner […] Left to the wolves in the night?” Well, he is still kicking, but someone else began paying attention, wondering if she’s headed for a heart attack.

In the last week of Rachel’s “leg brace” chapter, I started feeling this racing, skipping heartbeat. And at one point, when I went to take a breath, I was fresh out of air to take in. I swear I heard those wolves howling for my corpse, waiting to take me off to some fresh hell. I was scared.

“Jim, feel my heart.” I shoved his hand onto my chest.

“I am not a doctor. If you’re worried, go see Dr. J!”

Cut to this past Monday, and I am lying on the exam table, and his wonderful assistant, Sherry, is looking at the EKG, asking me to breathe and “relax.”

“Oh, that.”

“What? What did you see?”

“Hold on. I’m not sure yet.”

I wait. I try to breathe and unclench my teeth. My heart does this somersault.

“There! That’s it. Did you feel that?”

“Yes. What is that? What does that mean?”

“Your heart skipped a beat.” She didn’t seem worried, more almost excited. “You’re all done. I’ll pull off all these stickers and send in the doctor for a chat.” After she plucked the sensors off my body, she offered her soft hand to pull me up to a sitting position. In that moment, I felt my heart swell with love. Sherry has known me for 13 years now, ever since I was pregnant with Rachel. She has wept with the news of R’s illness, frowned when my A1C was too high, and smiled whenever I’ve walked in. But now, she is peaceful and kind. While I am sure she treats all patients with care, I felt extra special at that very moment.

Dr. J comes in, and we discuss how this is not a big deal…yet. This is a wait-and-see thing. He helps me set up my smart watch so that I can give myself EKGs anytime I want. He tells me if things get weird – like a heart episode for a ten-minute period – then I should come in. He can’t point to why my body is acting this way, but he can say I’m gonna live a while.

I take a deep(er) breath. It’s clear that “I’ve called the best seat in the house,” coming to visit Dr. J and Sherry. I put on my clothes, text Jim that I have an irregular heartbeat and a kickass smart watch to help me decide if/when I need more help. That smart watch? Whose idea was that? Jim’s.

So, at this very moment, my heart now keeps the beat with a new-ish Reid tradition: music nights. We spin records, and I post album covers on FB. We bop our heads and lip sync, and I’m liable to do a little air guitar or drums. We love it, and I feel strongly that Rachel will remember this for years to come. Tonight, we started off with Stevie Wonder and Marvin Gaye. My heart sang!

Rachel’s recovering very well from the March 22 surgery. On April 11, Jim, Rachel, and I braved that awful late-winter storm to visit the always awesome, talks-fast-like-an-auctioneer, Dr. Walker. It was a follow-up for the osteotomy. The result? The doctor praised her healing, noting that she was exactly where he wanted her to be. He broke her free of the braces during the day, but she still has to wear them at night. In a way, more work awaits us as we MUST do stretches, bridges, and stander time at home. Have to. No more sleeping at the wheel. And I’m really talking about me here. This means I gotta start the morning process early enough to get this done. If we don’t, then this surgery is all for nothing, so we can’t have that now, can we?

During the “leg brace” chapter, Jim was a rockstar partner. He arranged his work schedule so that he could wrap her legs in bandages and affix the braces. I showered with Rach, and got her backpack ready for school. Between the two of us, it became a machine of rhythmic and wordless moves. It got so well timed, that I would place Rachel’s hairbrush on the edge of the bathroom counter, right by the door, grab the hair dryer and lean over to dry my hair. When I straightened back up, the brush was gone, in the hands of Daddy Jim, debonair hair man.

We were a true team: working, aiming, doing the heavy lifting.

So when the storm hit on April 11, and they canceled Rachel’s school day, Jim and I were not letting poor road conditions block our way. And sun came like a streak of hope, casting the dark clouds in an opulent light.

Props too for the excellent team at Grandview Middle School. They made all the adjustments necessary for Rachel. And our own Fighter rolled with the punches, staying positive.

In fact, Rachel is STILL getting better every day. Her sentences are getting longer, stronger, and at times, funny…Examples:

  • When she was talking about dogs and how she wants one, I pointed out that she is normally afraid of them. She relented, saying she wanted one. I asked her how “llama brave” she would be. With my (small) help, she said, “I am going to be very llama brave!”
  • On one morning, I walked in, dressed and ready for the day. I was adjusting a scarf I had just plucked from my closet. She grabbed the scarf and said, emphatically, “NO!”   I said, “Whaddya mean, ‘no’? Are you saying the scarf doesn’t work?” “No, no scarf.” As she said that, Jim walked in, took a look at the scarf, and sided with Rachel. Then Rachel looked at Daddy Jim and said, with mild exasperation, “All black?” It had that “really, Dad?” sound to it.
  • This is directly from her speech therapist at Grandview from just this last week: “Rachel had a fantastic speech session today! We practiced making observations with “I see ____” (while looking at pictures on the Smartboard), and Rachel was able to independentlyformulate 7-word sentences in 7 out of 8 pictures!! They all had a similar theme (“I see a girl holding a phone” or “I see a boy holding a bunny,” etc.). Her independence has definitely increased in the past few months.”
  • At Target the other night, we were shopping for new sheets for her new bed. As I wheeled her through the store, she spotted a favorite Jojo Siwa product. I heard a sharp intake of breath. She raised her left hand, made a fist and tapped her forehead. She made a motion with her hand away from her head, opening her hand as she said, “Mind blown.”

That’s just some of the stuff we see. It is a miraculous joy to witness from a girl who lost all forms of speech just eight years ago.

We will start gait training at Grandview on Monday. This past week, they put Rachel in the stander when they could. Little by little, we’ll gain strength and extend the ROM.

This summer is shaping up to be a busy one: I will be teaching Creative Writing online and Research Writing for MCTC. I will return to do Summer Scholars Academy at Normandale. We are putting in a chair lift for Rachel in the house, so that we (mainly I) don’t have to push her up that steep driveway any longer. We also will be in the market for a good asphalt company; in order for the bus to pick R up in the lower lot, we need to put in a turnaround so that the bus doesn’t go back wards out of the driveway. All recommendations are welcome! I will also do BOH Day Camp and put these girls to work, encouraging projects, creativity, independence, and goal setting.

I have also picked up a few clients, assisting them with their employment materials. I hope to continue expanding this service, but for the joy it brings as well as the extra buck or two. Special shout-out to Stefano Lozito for your business! I am so thrilled about your new gig as a Project Manager! Congrats.

How does my heart feels now, given all that I have been through? Chris wrote this as a lyric to “Irregular Heartbeat” “To live like a man, so strong/I hold what I can until it weighs me down/ But you let in, the sun/And now I’m the lucky one.” I feel darn lucky to have you all, riding in the passenger seats behind me.

Well, I will likely write again in May, after I’ve put Spring semester behind me. Thank you SO much for your thoughts, prayers, meals, and good wishes with Rachel’s surgery and recovery. While our work is far from over, I look toward this summer as the harbinger of rebirth, refueling, and reaching goals for the Bus of Hope.

This Bus doesn’t do reverse! Ever forward!

Love,

Melissa, Daddy Jim, Grandma Kathy, and, of course, the fighting fashionista, Miss Rachellllllllll Reid

 

 

 

OSL: the healing, the opportunities

Dear BOH,

So much of this journey is focused on healing. Hippocrates offers this take: ““Healing is a matter of time, but it is sometimes also a matter of opportunity.” The fact that Dr. Walker was able to perform the surgery the Friday BEFOREIMG_6256.jpg

Rachel’s spring break strikes me as golden? Would you agree?

Currently, as I type, we are watching Mary Poppins Returns. To my left, amountain of laundry awaits my tender hands. To my right, an alert, free-of-pain-meds, Rachel is reliving the joys that come with the Poppins film.

To your question: how is she doing? Answer…I’ll use a Daddy Jim word – outstanding. Yesterday, it was my turn to care for Rachel. I got her settled into her wheelchair thanks to the ceiling lift we have. She looked down at her braces on her legs and gasped. Not knowing if this was pain-related, I asked her if she was okay.

“Yes!” she responded. She smiled as she looked on.

“What are you thinking?”

She pointed to her legs.

“What about your legs? You have braces on. What do you think?”

A moment passed; the smile on her face remained. “Cool,” she offered.

And that’s how it has been once we got over two hurdles: one, our over-confident notion that she didn’t need pain meds on Monday. Wrong. Once we caught up with it, the next hurdle was a (sorry for this) large BM! Beyond that, it has been pretty smooth sailing.

As of yesterday, as we changed her diaper, not one yelp of pain. Same for today.

Grandma Kathy came yesterday, bringing a favorite Rachel snack: Brie cheese, crackers, a jelly for the top, and sliced cucumbers. While the two of them enjoyed each other’s company, I was able to make myself eggs and sausage. Later, Mom and Rachel played Cat Bingo while I got a shower in. I’m beyond grateful for her giving me the opportunity to shower. In fact, my mother inspired me to break out the Windex and clean the windows! You laugh, but it’s true. Spring looks so much better through clear glass.

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This is Rachel in 2012 with Jodie. What a difference! 

Oh, before I forget, let me give a shout out to Miss Jodie Rasicot! If you have not met, Jodie was Rachel’s kindergarten teacher way back when. That year, Rachel dressed up as Cinderella, and Jodie arrived as Snow White. Kindred souls from the start, and now she’s a resident of our hearts.

So last Saturday, as we got home from Gillette, she arrived at our door with sloppy Joes, potato salad, and brownies. We remain touched by the gesture, Jodie! Oh, lest I forget, she included a 6-pack of Blue Moon! Now that’s an opportunity.

Rachel has slept very well, and that has allowed all of us to sleep well too. Tonight, when Jim gets home, Rachel and I will do the next round of tubbies.

The next milestone to reach is April 1st: this is the day Rachel returns to school. If today is any indication – the light in her eyes, positive attitude, and sweet smiles – she’s ready.

One more thing to bear in mind: way back in January, I started working on scheduling Rachel’s therapy assessments; these allow us to plan her next episode of care for the summer. Why so early? Most parents and families are taking advantage of summer to do the same thing. At one point, I hit a snag with PT. The scheduler wouldn’t let me set up the Lokomat without Walker’s signature, which would only happen AFTER surgery. In my small brain, that would be too late.

“Can I bypass Walker and have her rehab doc, Mark Gormley, sign the order for PT right now?”

I heard a pause on the phone, and then the scheduler suggested – reluctantly – that she’d try this option. Within a day, Gormley signed the order; I had to wait until the SINGLE PERSON who’s in charge of the Lokomat got back from vacation. But the good news is that no one else will be scheduled either, Melissa….

Whatever.

I’m embarrassed to say that I was a smidge bitter. Why couldn’t she go on vacation during the summer, after all this is set up?

The day that scheduler got back to work, my phone rang. I selected and got the time slot I wanted – Mondays, Wednesdays, and Fridays at 2 p.m. This works with my teaching, Rachel’s summer school, and Day Camp in general.

That brings us to this past Saturday, as we met with Dr. Molly, the physical therapist who helped us learn how to transfer Rachel in braces. Just before she left, she told us how she just got an email from scheduling, stating that the summer schedule for the Lokomat is ALL. BOOKED. UP.

So, that’s the way of opportunity, isn’t it? Grip the steering wheel, look to the future, advocate for the things you believe in, and then, as the British say, ‘Bob’s your uncle.’

Piece of cake. Nothin’ to it.

I’ll write again in mid-April. For now, accept our sincere thanks for your best wishes, love, light, prayer, and presence. For now, I need to get back to a “lovely day with” Poppins, laundry, and living life.

Melissa

Operation Straight Legs – the extended LP version

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Last summer, during the last month of Bus of Hope Day Camp, Rachel, Evelyn, Grandma Kathy, and I visited with Dr. Walker and first heard of an osteotomy. The news of some kind of possible improvement capped off a summer of hard work for Rachel.

So, what is that? According to the Encyclopedia of Surgery, “Osteotomy surgery changes the alignment of the knee so that the weight-bearing part of the knee is shifted off […] the deformed cartilage to healthier tissue in order to […] increase knee stability. The medial compartment is on the inner side of the knee. The lateral compartment is on the outer side of the knee. The primary uses of osteotomy occur as treatment for: Knee deformities such as bowleg in which the knee is varus-leaning (high tibia osteotomy, or HTO) and knock-knee (tibial valgus osteotomy), in which the knee is valgus leaning.” For Rachel, her knee is simply not straight. So over the course of 18 months of growth, the surgical goal is for the knee and legs to grow in a linear fashion.

On top of the osteotomy, Dr. Walker proposed to lengthen the hamstrings to aid in the same goal. Such this will help more immediately. So, what does this entail? This is from Medindia, and it says, “an incision is made on the back of the thigh in the lower part. Dissection is carried out to sequentially expose the [multiple] hamstring muscles, using electrocautery or dissecting scissors. These are then lengthened by cutting the tendinous part of the muscle and allowing it to stretch out. This is the most common type of procedure.” This additional process required an overnight stay to keep her pain managed well by the superb team of nurses and doctors on call.

At the end of February, I said something like, “Oh we have an appointment for cast removal…” and suddenly we are having flashbacks to the summer of 2014, when Rachel lived in a full body cast from July to September. Would it be the same? When did Dr. Walker say “cast” during our last meeting with him in November? Panic and confusion ensued, prompting frantic phone calls and visions of being home bound for weeks on end.

The wake-up call got us places, though. We learned that we’d be using a brace and bandages, not a plaster cast. We learned that Ali LaLonde, Rachel’s special ed team lead, wanted to do anything to keep Rachel in school rather than stay home. We eventually learned that an April 1st return to school, when Spring Break ends for everyone, is possible. We learned that the recovery time for this procedure is a fraction of what we have already endured. But at least we panicked and fretted. In our small defense, I think any parent would do the same thing.

So, in the days before the surgery, we make plans: Jim and I arrange our work schedule for the spring break coverage. We also sneak in a movie since it will be a while before we get to go on a date again. I take Rachel in for the pre-op physical with Dr. J. I continue to ask social workers at Gillette about wheelchairs and compatibility with the school bus. Initially, to keep Rachel’s legs elevated, we thought we’d have to use one of Gillette’s wheelchairs. The frustrating part was not getting a solid answer to that question before the surgery.

On Thursday night, we eat dinner. Evelyn and Emily come for a short visit. I start assembling meds for me, clothes, and a snack and drink pack for both of us. We give Rachel 10 whole mgs of Melatonin, so that she will rest fully before surgery. I make coffee ahead of time, and then Jim and I retire shortly after Rachel.

In the morning, at 3, Rachel is awake and ready to get this show started as Jim and I have our first cup of coffee. She had been partly excited and partly curious in the days previous. Repeatedly, she would say words like, “surgery?” “hospital?” “big nap?” and “sleepover?” For most people, this is how we feel about a hotel, and my guess is that Rachel thinks it’s about the same!

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I administer her anti-seizure meds and a final sip of water by 3:30. When I shower with her, I used a special mitt and soap that decimates germs in and around the surgical area. All the while, Jim is doing his favorite cheer, which is “You’re running out of time.” So helpful, isn’t it?

By 5:00 a.m., we are in the Honda Odyssey, heading east. The stars are bright, and I can still recall seeing three eagles perched on a low branch on the morning I was scheduled to give birth to Rachel. The sky is still a “ribbon of darkness over me,” to borrow from Gordon Lightfoot. Yet, those stars I saw illuminate the vast possibilities for us on the Bus.

We arrive by 5:45, unload, and stride in. It takes us about ten minutes to register with the front desk person. We walk into the waiting area, strolling past the Joe Mauer section, and take our seats. Within about one minute, Nurse Nick comes wheeling up in his own w/c, inviting us back to a room to get ready for surgery. Suddenly, I feel as though our timing is like a freshly installed belt on the Bus of Hope’s engine….in more ways than one.

At 7:15, Dr. Walker himself stops in for the pre-op round of questions and to offer his assurances that all things will go well. We’ve known Walker since the Summer of the Body Casts – 2014. He is a kind, smart, honest man. My only complaint – and anyone who works with him fully agrees – is that he talks way too fast. He sounds like an auctioneer, speeding through the description of item before rousting up the bids. I will say this, though: when Jim and I ask about process and procedures, we both often get the comment, “Yes, that’s a really good question.” At first, I’m all proud of us, but then, I think, don’t OTHER people ask this stuff?

By 7:35, I slip into the Hazmat suit, complete with the mask. We travel through the labyrinthine halls of Gillette, ending in OR. Just before this, Rachel cries out of fear and nerves. Normally, when the nurses dig out the Bonnie Bell chapstick bag to let her pick the scent of the night-night mask, she normally calms down. Not this time.
We get to the OR, and it really does look like a scene from a movie: Bright lights, trays and trays of medical tools, and a cadre of people masked up with halos around their poofy helmets.

I sing “Twinkle, Twinkle” to calm her. The anesthesiologist narrates the process of Rachel’s slumber with a fast clip, as if he too were an auctioneer. When she’s out, he points to her cheek, instructing me to kiss her.

As I walk back to where Jim is, an 11-year old nurse who offers cheerful comments as I start to cry accompanies me. “You are such a good mom. You did great back there.” Why the tears, you ask? The sheer amount of surgeries and procedures she has endured is staggering. And she does it largely with bravery. How many more does she need to do? Can’t this all end? All of these thoughts are too much to explain to this well-intentioned young woman who is gently ushering me back to where Jim is standing, waiting for me to return.

As I whisk away the tears, he gives me that “what’s up?” look. I begin explaining, but he cuts me off: “If she can walk after all of this, it’s worth all the trouble. Now let’s get breakfast.” At that moment, I’m craving a hug more than hash browns.

Around 1 p.m., Dr. Walker came out and spoke to us. He is enormously pleased with the outcome. It was smooth and had no complications. To our great relief, she has a removable brace, not a plaster cast.

When I get a fleeting moment, I snatch it to tell him how grateful I am that he *may have arranged his schedule to go on vacation. He smiles and says that he’s headed for Florida for a week to see friends and a daughter wrapping up her senior year in college. As I lean in to listen to his response, I hear him say that he “normally doesn’t fly the day after surgery…” So Rachel is someone he’ll break the rules for? Sold, to the Bus Driver craving good coffee!

While Rachel is still sleeping, someone from the equipment team has collected Rachel’s wheelchair. We get wind of an option where we augment it so that our OWN conveyance can be used on the school bus. This is good; this means that Jim can just get her up and onto the bus and collect her at the end of the day on April 1-11th. Nine mornings. As it was, he was prepared to take R to and from school. If this works, he doesn’t have to.

In the meantime, Rachel is stirring and waking up from the big nap. We head back, and we find a drugged out girl, but unusually calm and quiet. One of the anesthesiologist nurses has braided her hair. It’s beautiful, even if her face is contorted and sad.

Soon, we are in our room that we’ll stay in for the night. Rachel’s sweet smile returns about 2 hours after surgery. It’s about 3 in the afternoon, and the sun casts a golden glow onto Gillette’s red brick walls. I’m grateful for both beams of light.

Rachel’s appetite came back quickly for someone under anesthesia. One young nurse informs us of the process for waking up: 1. first you eat ice chips 2. then you move to water or a juice box 3. then you try a snack like a graham cracker. Rachel did all of this in an hour. Not an ounce of vomiting.

Our nurses for the afternoon, just before the shift change, are Jon and Jenn. Jon is of Chinese descent, and he’s well aware of the assumptions people make of him. “In fact, when people meet me, they think I’m the doctor!” I’m impressed with the leadership skills he demonstrates with a beaming smile, warmth, and sincere enthusiasm. This is perfect, especially since Jenn is in the beginning of her nursing internship. The two work well together, and I decide not to worry about anything here.

By about four in the afternoon, Jim heads home, leaving us to order dinner and settle in for the night. By five, I’ve discovered that I left my metformin and other supplements in a bag at home. Thankfully, I have my insulin pens. I will have to “make do” without Metformin. My numbers throughout the stressful day are a rollercoaster. Oh great! Better order the salmon!

At one point, Jenn asked how she was doing, and she flashed a thumbs-up with her eyebrows arched. It had the zip and energy of a pre-stroke Rachel. This gave me a ton of hope.

After dinner, I start thinking about bedtime and winding down the pace of the night. I find a couple of DVDs and books to read. Timing is everything, so I start rearranging the room.

“Work?” asked Rachel.

I just had created a makeshift office space (and kitchen counter) next to Rachel’s hospital bed.

“No, I won’t do any work. But I might write a little bit.”

“Write a little bit?”

“Yup. So what should I write about??”

“Rachel.”

—-

After a restless night, where Rachel woke up many times, I am up at 6. Rachel is asleep, and I slip out of jammies and pop into street clothes. I’m of a one-track mind at this point: COFFEE.

The nursing shift change is underway, and Jon and Jenn are right outside R’s door. I let them know where I’m headed. 

The normal place I go is closed on the weekend, so I head to the opposite end of the hospital, to a place called “The Overlook.” I walk past the history panels that narrate the meager beginnings of this institution, the large windows that usher in the morning light, and the small chapel open to all to enter.

I recollect a time back in 2011, while still living in the hospital. It was August, and I was on Rachel duty on my own. Jim had gone home for the night, and I had her in the wheelchair. I was craving some exercise and movement. So we took a long walk, both inside and out. We wound up in the chapel. We were the only ones there. It had become clear to me that much of the conversation would be up to me as her voice was silenced, thanks to those strokes.

I can remember talking with her, then pivoting my body and words to the cross. While I don’t recall the exact things I said, my desperate message was something like, “here we are in this awful mess, but you are alive, Rachel, and now, we have to find a way out of this. I just don’t know how.” The silence of the room and my daughter were daunting, haunting, and oddly peaceful. Hospitals are by nature, quite noisy. This moment was the balm I craved after a steady diet of stress, uncertainty, and loss.

Now, nearly eight years later, the silence I prayed over is filled with the chorus of possibility. Rachel’s own voice is a melody of words that keeps me moving forward now as I find that coffee, order two shots of espresso, and groove my way back to Rachel’s room. She’s come so far; this much is true. But the road signs I see are clear: more work ahead.

She is awake by the time I return. Calm, sleepy, but happy to see me.

Jon and Jenn enter the room, and they announce the plan: discharge. Jon orders meds, and Jenn works on vitals.

I take a picture of Rachel, watching a cartoon, smiling. I also take one of the names of the procedures done. After posting these on Facebook, a conversation starts about the name “Walker” is such a good omen for us. Which is true! I offer that it would be somehow problematic if the doctor’s name were Wheeler.

Shortly after I make that comment on Facebook, I hear a knock at the door. A sixty something white man walks in slowly, looking at Rachel, then me.

“Hi,” I say. “Can I help you?”

“Hi, I’m from the pulmonary division. My name is Dr. Wheeler.”

Now, we go on to have a very sweet and kind conversation, I confess, but there were moments where I wanted to kick his sweet ass out just because of his name.

By noon, we have our meds, our things, and our kid. The last test we must pass is getting Rachel into my van. About three years ago, we installed a Bruno chair into my car. By the push of a button, the motorized chair moves from its perch all the way out, about four inches off the pavement. At one point in our many conversations, I suggested to Jim that the chair might work. He dismisses it, and I’m betting he thought that would be too simple.

He pulls the van up, hops out, and decides to try it. Once the chair is ready to receive Rachel, he carefully lifts her out of the wheelchair and onto the Bruno. She is comfy and not in any pain. The moment of truth is here: Will this work? Jim pushes the button, and slowly, Rachel is lifted in as usual. Right as the toes get close to the doorway, we hold our breath. If we lift her toes just about an inch, she’s in like flin.

Elated are we!

I hop into the way, way back, Rachel peers out the window, and Jim swerves the Bus westward. It’s time to have our next set of prayers answered, pivoting from a center of hope, faith, and driving forward with hard work.

The Tweening Queen Abides, and the BOH glides

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thDear passengers,
If Dad was alive, we’d be listening for robins and filling birdfeeders. If Dad was alive, I might dig out a baseball glove and play catch with him. If Dad was alive, he’d be all aglow, watching Miss Rachel grow into a Tweening Queen. Cue the ABBA song now!

Seriously, in so many ways, Rachel is your average, normal tween. She reports that she has math homework, and as such will ask for her Chrome book with a pad of paper next to her. Now is she *actually doing much homework? She might start out looking at a school site, but before long, slime videos flood the screen with their brightly colored gooey-ness. A few weeks ago, she had developed some strong crushes on boys at school. (Yes, you read that right: crushes on boys.) We all – parents, teachers, staff, and a few choice friends like Evelyn – had to temper that passion by saying, “this boy is your FRIEND. Not BoyFriend.” Watch that girl, indeed!

Rachel’s hard work and overall very positive attitude impress us all. Ali LaLonde sends weekly messages praising this “winner takes it all” approach of hers. Her physical therapist at school, Jim Reed, told me recently that she was getting frustrated and weepy while working in her power-wheelchair. Jim put his foot down and wouldn’t stand for the drama queen. “That’s not gonna work with me, Rachel. Pull it together, think about what you gotta do, and try again,” he said. She finished her kvetching. She did as she was told and achieved success multiple times after that straight talk.

She continues to lengthen and variegate her verbal responses. For example, after she uses the commode, the first thing she says is “I’m all done.” After I make her wait a few minutes more, I’ll ask, “OK, what’s my next step?” And she says, “Put me on the bed, please.” She is also making cognitive connections far faster. For example, while waiting to go inside a local restaurant, I noticed that R’s wheelchair was CAKED in mud. I found a stick and started scraping it off so we didn’t bring it INSIDE. The next day, Rachel’s wheelchair had clumps of new mud. As I reached for the broom in a corner, she had unearthed an unused jumbo Caribou straw, held it up, and exclaimed, “STICK! STICK! Here, Mom!” I was pleasantly surprised and really proud of that small moment.

I know I say lots of positive things about Rachel, early and often. Perhaps I should share how she’s NOT PERFECT. At the start of the year, she was struggling to focus and perform well in math. She had a poor attitude for about a week. We discussed the implications of poor behavior at home, and I demonstrated how I would put one of her toys in the garbage if things didn’t improve. (We also threatened to take away music nights!) The teachers and support staff put their heads together and made some simple changes. Within the following week, we had heard that it was a rockstar day in math. And now I haven’t heard a single bad report.

And there are times when I would like to sell her on EBay, given her Tween-Queen status. Part of her hard work involves helping with transfers from A to B. One day, she was NOT HELPING. It was like moving a concrete slab instead of a dangly, but growing girl

“Rachel, you forgot to help me with the transfer! Come on!”

I’m rubbing my back, which is sore from the hard work. She looks up at me, all smiles, and said, “Oh shit.” As if she was saying, “I FORGOT!” Now for the record, I should not condone profanity from a 12-year-old! But I cannot deny that it looked like she was “having the time of her life,” trying the patience of her mom. Ahh, the dancing tween! “See that girl, watch that scene.”

I can hear my father laughing! And singing, “You can dance! You can jive!”

To assist with that dream we all have for Rachel, she is scheduled for a procedure this Friday, March 22. Her father and I will bring her to St. Paul’s Gillette; once there, Dr. Kevin Walker, the one who operated on her hips, will lengthen the hamstrings and perform an osteotomy. Both things will promote straighter legs and the potential for better walking. As it was explained to us, we are smack dab in the middle of an opportune moment. She is still growing, and she hasn’t menstruated…yet. When Walker performs the osteotomy, Rachel’s legs will grow into the desired position gradually over the next 18 months.

More immediately, this summer’s episode of care includes a return to the Lokomat – the exoskeleton that promotes walking – three times a week (Mon/Wed/Fri) over a seven-week period. Then she returns to regular physical therapy back at Minnetonka. On Tuesdays and Thursdays, she will have speech and OT. Oh, and she’ll do summer school, too.

Speaking of summer, I will host Evelyn in our second edition of BOH Day Camp. Get ready for Hamilton references. Get ready for pictures and videos of Rockin’ Rachel and the Young, Scrappy and Heroic Helper Ev, never “throwing away her shot” at setting Rachel free to walk.

I will write a blog post/email after the surgery, alerting you of its outcome. I need you to follow your marching orders, keeping us in your hearts:

  • Envision a positive outcome for the surgery itself.
  • Be with us in spirit as we take turns caring for Rachel during spring break and going to our regular jobs.
  • There’s a possibility that the loaner wheelchair could be used on the schoolbus, but it’s not a guarantee. Jim is working a modified schedule to ensure that she goes back to school on 4/1. IF, If, if she could use the schoolbus, this would allow Jim a less hectic schedule. Keep Jim in your thoughts as he shoulders the transportation duties.
  • Finally, envision April 11 as the day Dr. Walker removes the use of the brace/cast thanks to proper healing on Rachel’s part. This outcome also means that the therapy schedule this summer is well timed and could capitalize on the straighter legs for mobility.

If my father was alive, he’s say, “you gotta believe that good things will happen.”

Well, I often use his blueprint as a driver’s manual for the BOH.

I thank both my earthly father and Heavenly One for the grace that hope offers.

Stay tuned.
Much love,

Melissa

Going to Meet This Man

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James Baldwin, an activist for social justice, once argued, “All men are brothers. It’s just that simple.” As a citizen, an instructor, and a parent, I have done what I can to honor his philosophy.

Recently, Mark, a former student-turned-friend sent a text with a rushed, happy tone…Hello Melissa…What are you waiting for? Go see If Beale Streets Could Talk! #James Baldwin Masterpiece. We arranged for a “date.” I headed to the library so that I could read the book before seeing the movie. I finished it at a quick clip the night before we met up.

I arrived at The Lowry, a bustling eatery located in Uptown, Minneapolis. The joint is hopping with hungry hipsters, welcoming the end of the week over lunch. For a moment, I thought I had beat him here. He doesn’t drive, so maybe his bus was late?

I walked up to the fireplace, warming my fingers. I looked to my right, and there was Mark, leaning out of the booth, looking for me. I waved, quickly moving in for a bear hug. As I hugged him, his soft cheek gently pressed into mine, and his voice rose up with a joyful crescendo.

After I settled in, we burst into a jazzy call and response, telling how we’ve been and what we’re up to:

Mark is working on a grant within a library, researching history. I’m teaching at two schools, both reading and English. Mark just moved into a high-rise apartment that’s small, forcing him to downsize his books, much to his great sadness. I’m living in a house that really should be one level for my daughter, in a wheelchair. Mark isn’t dating anyone, claiming it would have to be just the right person. I am still with the same man, my husband Jim, and we’ve made it work for years and years, despite the hardships.

Mark has seen many movies, and he peppers the conversation with questions and suggestions. I volley back with my own. If he liked a movie, that smile widens across his face while his eyes flicker with light. If he’s not so crazy about a film, his face goes sideways, with a full-on eyeroll, and a quick little “well…” I don’t press much further. It could be a dissertation.

As you can see, we have nothing to talk about and nothing in common.

“Now, don’t give up on love, Mark. There’s someone out there, just for you.”

“But Melissa, I’m getting set in my ways. I’m 57! And the older I get, the more set in my ways I become!”

“Right. I can understand that.” I found myself looking at his face, for aging clues. Seeing no obvious ones, the afternoon sun casts a halo of light around his face, making him look far younger than his true age. I. am. Jealous.

“You know, if I want to see a show at a theatre, I go! If I want to take in a movie, I go! I don’t have to check in with any body!”

I smiled and nodded. “But Mark, here’s a question: are you lonely, or simply content with being alone?”

“Simply content. I really am.”

The waiter came by and asked if we are ready to order. I flirted with ordering a beer, but I wasn’t going to drink alone. Something about it felt wrong.

“Mark, are you having any booze today?” He said no, so I chose a Diet Coke and lemon. He ordered water with a whole plate of lemon wedges. My kinda person.

As the waiter retrieved the drinks, I asked, “Are you dry?”

“I am dry. Well, it’s like this. Sometimes, I will have a glass of wine, but that’s about it.”

“Mark, I can’t drink wine at all. If I do, I don’t know when to stop.” It’s true: I stopped back in 2013. I don’t miss it. Beer works better, but even then, one or two is about all I have.

“Ahhh…is that so? Yeah, it’s tricky, I guess. The way I see it, I might have one drink, and think, ‘Well, this is fun.’ If I have a second drink, then I think, ‘Well, anybody can touch it….” Just at the right moment, he laughs at his own joke, and I clamor to catch up. When I do, my old lady-laugh mingles with his low, booming chuckle. We make a melody of our merriment.

“So if you don’t do drugs, smoke cigarettes, drink much booze, what gets you high? Makes you happy?”

“MMMMmmmm…I love live performance. I love a good movie. I love music. I love a good book. Anything like that is good enough for me.”

He would have loved my late dad, and I think he’d love my mom! Mark’s happy place – the performing arts – is a large part of my parents’ blueprint for raising me well.

We ate for a bit, and I wanted to learn more about him. When I met Mark so many years ago, he was eager to move forward with his life and education. He spent 14 years in prison prior to the class with me. And just like so many other students I’ve had in the same position, Mark’s outlook on freedom is one of profound grace and gratitude. His smile – then and now – is like a harbor light in a misty bay.

“Where are you from, Mark?”

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“Michigan! Oh boy, when you all lost Prince, I felt sad. But when we lost Aretha, that was hard on me.”

I nodded my head in recognition of loss. I wondered what music, especially from the world of Motown, provides the soundtrack of his life. Next time, I will ask.

“Can you tell me about your parents?”

“My parents are both deceased. My aunt raised me.”

I felt like someone sliced me in the chest with a cleaver. I could relate to the loss, with my father’s passing in 2010 to cancer. But at least 40 years of living allowed for my dad and me to formulate a connection, and a loving one at that. My mom is still alive, witnessing my daughter’s recovery from strokes and illness.

“I’m sorry, Mark.”

“I have very few family members who I talk to. They are also scattered across the miles.”

“Do you have a circle of friends you can connect with here, in the Twin Cities?”

“Yes!” His smile returned, even after that heavy darkness of truth. “That circle is small, but reliable.”

I wondered if he sees me as a part of that circle?

 “What time is it, Melissa?”

“12:10.” Our movie starts at two.

“Ohhh. We’re early!”

Mark has always been one for punctuality. He hates to be late for anything. Even without a car, he has mastered the public transportation system to work for him, nearly without fail. I remember him rolling his eyes if I extended a graceful pause to students who might be a little late for our Saturday morning class years ago.

After we finished our meal, we asked for the check and paid our own ways. We don’t engage in any wallet-wielding bravado here: we are equals at the table. That feels right.

We left the restaurant, and I explained how I had to park a few blocks away. It was bone-chilling cold, and this inspired me to move quickly. As I am strutting ahead, I looked back to find Mark moving slowly, gracefully, despite the chilly weather. And I don’t think it’s from age: I think it’s his own tempo that feels right for him. As Mark grooved with serenity and soul, I decided to adjust my gait, even if my teeth chattered.

Once at the movie theatre, I confessed to Mark that I love popcorn and will not share it with anyone. He laughs. He orders himself red licorice, and I carry the large popcorn, glistening with butter. He selects our seats, all the way in the back row.

I look at the smattering of people, on a chilly Friday afternoon matinee…

I have to back up here: When I met Mark, he was in my freshman Composition course at a community college. After he finished the AA, he went on to achieve a BA and then MFA. His dissertation highlighted the lack of diversity in the audiences of many theaters, especially in live performances.

So here we are, a few years after he successfully defends this thesis. Here we are, to see James Baldwin’s story come to life on the silver screen, and here is my date, Mark, and he is the only. African. American. Person. In. the. Audience.

That floors me. Why is this? This film is not written to a black audience, but rather all Americans, period. It’s as simple as that. The story’s themes are love, hope, despair, and the search for justice. Doesn’t a lot of that apply to all of us?

After I rather loudly whisper, “where are all the people of color?” to Mark, I glance at him to see him nod his head and shrug. I’m sure there was an eye-roll thrown in for good measure. Next time we meet, we better talk about this…

At one point during the film, our shoulders touched and remained pressed into one another. It struck me as a moment of warm affection. It also felt as though we were saying to one another, I am your equal, drinking in this movie. I am here to celebrate your happiness. I am here to carry your burdens. And I know you will too.

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After the movie, I drove him to his high-rise apartment, a few miles from the theater. I hopped out of the van, hugged him, and thanked him for making the trek to see the movie with me. (I found out that this is his third time seeing it. I duly note his grace and patience in being my escort.)

I zipped back into my van, and I peered out the window to see Mark serenely enter his building, smiling all the while.

After I got home, I received the following text: “Thank you for a wonderful afternoon. I will cherish this day forever – Mark.” As I embraced his sentiment, I’m reminded of a quote from James Baldwin, who offers: “We are responsible for the world in which we find ourselves, if only because we are the only sentient force which can change it.” His words (still) serve as a way to unite a fractured society.

Dig this: with a friend like Mark in my world, Baldwin’s legacy allows both of us to sing life’s blues in unison, paving the way for better days ahead.

Zits, Pits, and Benefits – the windy, bendy roads of the BOH

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Dear Riders,
It is Friday, and a new tradition holds: staying home, eating dinner together, and spinning records to close out the evening. It’s not much, but it’s everything I could want for now.

ww pumpkin patch 2018

 

 

 

When I last wrote, it was the end of October. Our family enjoyed our traditional journey to Whistling Well Farm to pick pumpkins, a meal at Afton Inn, and ice cream at the Selma’s Parlor.

In November, which was largely a blur, we sat down with Rachel’s team at Grandview Middle School to discuss her IEP. By comparison to last year, we learned of her increased focus and positive attitude. She also walks farther and farther in her gait trainer on a daily basis. She even works up a sweat!

Her teachers are impressed with her thinking skills. For example, her social studies teacher sent me the following email:

Yesterday Ali brought Rachel to my room as we were starting to play a review game in social studies. The para wasn’t here yet, so I sat with Rachel after Ali left my room. I read her the next two questions in the review game, and for each question she immediately moved the mouse on her Chromebook and clicked the correct answer.  I know it could be coincidental, but I also know that our para, Gwen has been working with her a lot on reviewing key info in each chapter.  Rachel listens to the chapter being read to her when other students read silently, and Gwen is having her do more and more writing on the study guides. Rachel also highlights her notes like Ali had shared at the meeting. Just out of curiosity I had a para give Rachel the modified version of Chapter 9 test. I told her to skip the written response questions. Her score was 4/7, which I think is pretty awesome!” (To this instructor, I say this is who Rachel was, is, and will be.)

Look at all the verbs in that paragraph: “moved the mouse, clicked the right answer, listens, highlights, writing…” In a scene like this one, it’s clear that her brain is making the slow, steady progress we’ve all hoped for.

During the holiday break, Rachel and I spent a lot of time together. One particular evening, we played a board game, and her concentration and motivation far exceeded her previous efforts. I then dragged out the sight word flash cards, just to see how many she knew. These cards have a picture on one side, and the word only on the other. I started with just the word, and at three points in the session, she was able to read the several words aloud in a surprising speed. And even if she needed the picture, she could use recall to tell me what the word was. Also good.

The Science Daily suggests that “the brain is a battler. Within weeks of a stroke, new blood vessels begin to form, and, like marching ants, newly born neurons migrate long distances to the damaged area to aid the regeneration process.” When she was still in the hospital back in 2011, I wish I fully understood how her brain was healing thanks to the neurons marching to the damaged area of the strokes. I might have slept better. But I was too afraid, living in a darkness of the unknown.

One area of her noggin that remains strong is her wicked sense of humor. Case in point: This evening, Rachel and I were side-by-side on the couch. Hobbes, our cat, was sleeping behind my head, snoring softly. I heard a different snoring sound, slightly louder. Jim is to our right, in his EZ chair, so I assumed that he had drifted off. She was staring at me, and so I gave her the “shush” sign. She just smiled. I went back my computer, and then I heard the noise again. I shot a look at Rachel, and pointed at Daddy Jim. She whispered “no.” I looked at her quizzically, and then I figured it out: “Rachel, are you making that snore sound?”

“Yeah.” The smile on her face was filled with the kind of joy that comes with knowing she’s fooled you. I laughed so hard….

Not only is her brain developing, so is her…body. Her pits have hair, her zits are pop-able, and we’re already on the next size up on her bra! While you gasp at that, picture this: During our daily dressing phase of the morning, I have to wrap my arms around her to snap her bra straps together. She and I just naturally curl into a hug, her head gently rests on my shoulder. I haven’t had this kind of hug since before the strokes. It’s a beautiful deal.

On December 6, Rachel Reid turned 12. We squeezed four families of her friends over that Thursday night for appetizers, cake, and presents. My mother came too, and she marveled at the little circle of friends for whom we’ve swung the BOH doors open. Rachel received some slime kits and Crayola art kits. The room got quiet when we opened the gift from Evelyn, her friend from last summer’s Day Camp: The four-album soundtrack to HAMILTON! Yikes! And when we put the first album on, a lip-sync battle ensued with Evelyn, Ginna, and Rachel, too!

We continued the celebration recently with a trip to the movies to see “Mary Poppins Returns” with Rachel’s friends and families. Bella gave Rachel a JoJo Siwa doll, thus rounding out the gifts of her desire. Rachel squealed with delight, pevelyn, rachel, and bellaiercing the dull air with her joy. Thanks, Bella!  

With the birthday, and now the holidays behind us, we are back to the grind of school, work, and teaching. As many of you know, I work as a part-timer. In order to secure health benefits, I must carry 12 credits of classes. As usual, I am glued to the computer, morning, noon, and night, hoping all the classes fill. For the first time, one of my classes was dropped due to low enrollment the Wednesday before the semester began. This caused my credits to drop to 10, under the magic number for benefits. Jim and I were stunned.

Over the next few days, I reached out to a few colleagues, expressing my concerns and asking questions as to what to do. Karen, a good friend and colleague, suggested that there might be a loophole that allows me to save my benefits. Here’s what I’ve learned: if a person has 12 credits or more, the union’s hard work gives me benefits. However, because I worked a full time schedule last fall, my ten credits gets “full contribution under ACA for spring semester.” So, this means that thanks to the Affordable Care Act – also known as ObamaCare – my family will not just receive the benefits but also at the normal prices, not premium. This is a stroke of good blessings, I tell you.

Speaking of benefits, I’m now the owner of an Apple Watch. It features three rings that measure your activity as well as an app that checks your heart rate. A particular ring keeps track of your standing. I was shocked to discover that standing for 12 hours closes the ring.

“I didn’t know standing was so important,” I said to Jim, sitting in his chair.

“Sitting is the new smoking,” he responded. He’s right…while he sits, right?

It also counts steps, and in an average morning when I get Rachel ready for school, I take nearly a half of mile of steps in our little home. I do like this watch!

Speaking of time, for the last two Thursdays, Rachel has attended a class called S.A.F.E., which stands for Sports Are For Everyone. As long as I’m not watching Rachel, she performs well and doesn’t cry. Ev joined us yesterday and helps motivate Rachel to do more. You can watch them play catch here. Thanks to Ali LaLonde for this great video.

We recently visited Dr. Walker, her hip surgeon. And he discussed with us a procedure that straightens Rachel’s legs. I believe it’s called osteotomy. It has the potential to help Rachel walk again. So, on Friday, March 22, 2019, we will head over to Gillette to have this procedure done. The following week is spring break for Rachel, which will allow her to rest and recuperate beforeheading back to school. We are cautiously optimistic that this will inspire great big steps in Rachel’s recovery.

In the meantime, we will adjust our schedules to spring semester. Jim is ready to deliver food for DoorDash for a few extra bucks if we need it. Sometime in March, we will meet with Dr. Gormley and begin the next round of assessments for the upcoming episode of care this summer. Jim and I will go and enjoy two comedy shows in February and March: the first one is Trevor Noah, and the second is Jim Gaffigan.

Here’s hoping that 2019 has

  • more autonomous movement of Rachel’s body
  • another fun run with BOH Day Camp
  • a successful semester of teaching
  • an even more positive year for Rachel as a sixth grader
  • peace of mind
  • a little more exercise
  • a little more laughing

Please keep your fighting spirit flowing, not just for us but for you too. We all deserve the kind of love and support that the BOH has received for the last eight years.
With great gratitude, and moving ever forward,
Melissa, Jim, and that tween-girl named Rachel E. Reid

 

rachel uses righty to play with slime

Here, Rachel is using her right hand to play with slime.

 

 

 

 

Whoa, Nellie! Musings on the Bus of Hope

Whoa Nellie! – Musings on the Bus of Hope

Dear BOH passengers,
While driving this Bus of Hope, I have

pat_nellybelleconfronted every conceivable emotion, frustration, or element of surprise. Yet, as a faithful driver, steering this vehicle towards vistas of hope, sometimes I have to pause and say, “Whoa, Nellie!”

 

When I wrote last, it was all about BOH Day Camp and a little girl named Evelyn, hanging out with Rachel. Do you remember how I said that she is very bright, and that she knows every word to a Broadway show called Hamilton?

Well that very show was in town for two months. I heard about a lottery for tickets to the show, so I downloaded the app on my phone, and I dutifully entered the contest on a daily basis.

I tipped her mother, Emily, onto the contest too.

On October 5, just as the show is about to end its run here in town, I received the following text from Emily:
EM AND EV AT HAMILTON

I won the Hamilton ticket lottery!!!!!!! I’m going to take Ev tomorrow afternoon! She’s going to lose her mind when I tell her!”

Whoa, Nellie! I was so overjoyed for Evelyn! No one deserved seeing this show more than Ev. And if winning the lottery weren’t enough, getting front row tickets was the topper of them all! Congrats, Evelyn and Emily!

*** ***
Did you realize that Rachel is a 6th grader? She is back at Grandview Middle School, with Ali LaLonde in the driver’s seat, making sure Rachel walks in her gait trainer for 30 minutes every day, hops into her stander each day, and does everything possible to keep her potty training schedule running smoothly. Rachel is mainstreamed for Social Studies and other subjects. But for language arts, she is with some of her closest peers in the special needs department.

Ali makes sure that we get the invitation for India’s birthday party, held at a local pool, and somehow, (whoa Nellie!) it’s all three of us, (Rachel, me, AND Jim) going to the party, meeting India’s parents, comparing field notes on raising our daughters.

Among this group of girls is Bella, who has been in this picture for some time. Bella came into this world with Down syndrome, fierce independence, and humor. Apparently, Rachel and Bella are very close, and Bella takes to helping Rachel navigate, park, and carefully brake Rachel’s wheelchair.

One para, Gwen, has inspired Rachel and Bella to work hard in Social Studies, devising projects that promote learning and fun just for them.

At Rachel’s parent-teacher conference, her morning meeting teacher, Katie Rutledge, pointed out Rachel’s marked improvements in terms of concentration, attention span, focus, and efforts in the physical work she must do. She also mentioned the multitude of friends who gravitate towards Rachel.

Case in point: while Rachel does her walking up and down the hallways, a few boys come to Rachel and offer advice and cheering, reminding her to pick up her knees, “just like this.”

Uh, were you reading this? I said “BOYS!”
Whoa, whoa, whoa, Nellie!

Do you remember how Rachel had been training on a power wheelchair all last summer? Her Gillette team was really excited with her progress by the end of the summer. Whoa N— No, wait, there’s more.

Just before Rachel started school, her own power wheelchair arrived, thanks to the diligent work of therapists and doctors at Gillette. As we put away all the wrapping and boxes for the wheelchair, I thought, hey, maybe she can go back and forth to school in this chair, and then I won’t have to push her up the awful, steep hill of a driveway to get her on the bus.

Not so fast, Melissa.

I did a very short bit of research about power wheelchairs and school bus transportation. I learned that the power chairs have to load onto the bus….going backwards. And, to get the chair onto the bus itself and strapped in, you must PUSH it, and it weighs 500 lbs.

On a Friday morning in September, I arranged a meeting with the school district’s physical therapist, (named Jim Reed, oddly enough), Kathy, the head of transportation, the two bus paras, Kari and Amanda (who totes a pint-sized son named Lincoln,) Marty, the actual bus driver, Ali LaLonde, the special ed teacher, and Sarah Kubal, the representative from NuMotion, the company who furbished the power wheelchair.

Our own Jim Reid was there too, and he led the meeting, offering clear instructions on how the chair works. Everyone listened intently. We even rehearsed how to get it onto the bus, which was right outside, on the street near our house. Jim suggested that Rachel has some proficiency with the chair, she is not ready for it 24/7, hence taking it to and from school. He figured that we MIGHT try next spring, toward April, MAYBE.

We also discovered that it’s NOT EASY to go backwards onto the lift system. Whoa…

After an exasperated 10 minutes, Daddy Jim finally got it onto the lift. Right about then, I had an idea, and I have to confess, a good one.

“Say, why don’t you just take that chair right into school now? She needs to learn how to use it at school anyway, right?”

(If we had kept the power chair, I would have had to hurry up and buy a ramp for my van to get it into my car….)

So, that day, the power chair became part of Rachel’s world at GMS.

In fact at the conference we just had, Ali mentioned how Rachel’s increasing her speed and accuracy in the chair, and if that’s not enough, the staff has already extended her daily time in it.

Jim and I are pleased with the conference, the power wheelchair meeting, and the daily reports from staff, teachers, and paras. It’s clear: Rachel is loved left and right. And Rachel is improving day and night.

And when we are “home at last,” together as a family, we try to keep it calm, cool, and collected. Chill too.

One of latest ways we knit ourselves closer together is through playing music, vinyl records to be exact. Over the last year, Jim has furnished our household with a stellar sound system, complete with the record player. We have hunted for good selections at Mill City Sound in downtown Hopkins.

Now get this: one particular band that Jim likes is Steely Dan. I’m sure you’ve heard some of their greatest hits, and if I said Aja, many of you might nod your head, saying, Oh yeah, that sounds familiar. Well, our Fighter has decided that Steely Dan is her favorite band. I’m not kidding.

We have played the music so much, she is starting to learn the lyrics, recognize the “sax-phone” as it rings out, and make requests for specific songs! Can you believe it? Who knew that vinyl records and a 70s band would rock Rachel’s world?

Over the last year, on music nights, Jim has told stories of a man named Gordon Hookailo, a friend he’s known since grade school. The two men grew close through the love of good music, recording bands, shooting video, all while living on the east coast.

It has been several years since the men connected, and one night, way back in April, after hearing yet another yarn of a tale, I decided I had to find this “dude.” Somehow, someway, for Jim’s 60th birthday, I had hoped that they could catch up.

Well, I found good ol’ Gordon, and he secretly sent me a DVD filled with pictures and video of a special time in 1980 in a place called Jaffrey, New Hampshire. We arranged a FaceTime call on September 16, the day before Jim’s birthday.

I hid in the dining room, hovering over my laptop. Gordon and I did a quick, quiet rehearsal with Face Time, establishing a connection. I carried out my laptop, walking very slowly toward Jim, who had NO CLUE what I was up to. Just before the big reveal, Jim winced a little and said, “What are you up to?”

I placed my computer on the table before him, and I said, “Say hello to your friend, Gordon!” Jim’s face lit up with surprise and joy, and the two men talked for nearly three hours. I heard such rich stories! They compared notes on moments, people, and times gone by. (Whoa Nellie, indeed!)

You see, Jim didn’t want a party for his 60th, or any birthday for that matter. (I did, but this is not about me, is it?) So this phone call that I delivered was just the ticket. Happy Birthday, Jim! I love you.

I have begun my 18th year of teaching. It doesn’t get more “Whoa Nellie!” than that! I’m having a good, solid semester, and the students are almost all pretty delightful. Recently, I wrote a blog post about holding a little boy in my arms in a college classroom. The words are few, but the pictures are something I’m very honored to share. I’m so incredibly lucky to be a teacher; I simply love what I do.

Rachel is still improving. I want to share a moment that happened this week. I was standing in my kitchen, clad in my apron, ready to tackle the dishes. Rachel was keeping me company, all while I emptied and filled the dishwasher. Such a mundane task is almost always better with a pal like Rachel, but the best thing that I’ve added is a bird feeder right outside my window. And thanks to the suggestion from some stellar ladies, Teresa and Paula, self-subscribed “bird nerds,” I filled my feeder with plain shelled sunflower seeds. So on that night, I motioned to Rachel and pointed out the window: “What do you see?”

“I see the birds!”

“Very good! What are they doing?”

“They are eating food!”

Just like that, Rachel effortlessly created responses that were complete sentences, not just a jumble of words. And she did it here at home, not just for Big Rachel, the speech therapist at school.

I was Whoa-Nellie-happy, man.Rachel holds a Steely Dan album

Aren’t you?

This is long enough. I’ll likely reach out close to Christmas. In the meantime, may your vinyl spin peace and joy, radiating light, warmth, and joy.

Steady at the wheel,
Melissa

A special welcome to Bella, her dad, Ian, and Gordon Hookailo!
Welcome to the BOH!

 

Pint of Peace

Last summer, Normandale Community College offered me the opportunity to teach Summer Scholars Academy. With a generous grant, the program invites students to take a four-week refresher in English, Reading, and Math.

summer scholars picture 2

Once I figured out daycare for Rachel, my special needs kid, I said yes, signing on to teach two sections of writing.

Marissa, a warm, affectionate woman in the leadership role, began setting me up with supplies for the students, rooms for the classes, and tee shirts as a reward for completing the course. I came up with a neat little slogan for the back of the shirt: #boomhereIcome.

The courses ran from July 16-August 10. Marissa invited me to welcome students at a kickoff event before classes began. I committed to the date, and I planned on wearing a hat I bought after a riveting performance of Cirque de Soliel. It’s quite a fetching cap, and it communicates fun well before I say it myself. And that’s one of my teaching tenets: when we learn things, it oughta be fun.

So, that morning of the kickoff, I got my kid off to summer school. I flung on my hat, hopped in my car, and set off to meet my students at Normandale.

I wandered into the classroom that I was assigned. Students came in, looking a little dazed, wondering if they were in the right spot. As I spoke about the kinds of work we would do in the class, a beautiful woman walked in. She had two children with her, a boy and a girl. From what I gathered, the boy was younger. Once his eyes met mine, my heart went boom.

It was clear that the mother, her name is Zaruta, was doing the typical thing a college student/mom does: wrangle the hyper little ones while trying to fill out a form or ask a question. I sensed exasperation, but she kept smiling, keeping a brave face.

“Can I hold him while you find your daughter?” She had wandered off into another room.

Zaruta shrugged her shoulders as she nodded her head. As if she was saying, Good luck! You are welcome to try!  

So, I bent down, and, as if we’d known each other for a thousand years, he reached up, and I scooped him into my arms, letting him rest on my hip.

By now, my heart is expanding into the constellations, well past the North Star. His smile and his teeming trust grounded and humbled me.

In one of her essays, Zaruta borrowed a line from Mother Teresa: “Peace begins with a smile.” It’s clear that she has hooked her own maternal philosophy onto this quote. Just look at his beautiful face as I hold him.

Later she wrote, “Nothing contradicts my smiles, my smile is not fake too, it comes right from the button of my heart.” I don’t know the whole of Zaruta’s story, but I bet smiles were not always easy to produce.

As I held her son, he quickly discovered my shoulder as a pillow. I kept talking, swaying to some mystical melody between us. Within minutes, he was asleep. Shortly after, he snored like an old man.

summer scholars picture

This moment with Zaruta’s son is now burned into my lifetime of memories. I will never forget holding this pint of peace.

With a mother like Zaruta, his future is bright.