Category Archives: muscular dystrophy

Thank A Teacher

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My kid’s report card made me cry.

In the good way!

Teachers are so undervalued in today’s world, a phenomenon I’ll never understand, and I’m all soft and squishy these days, so not up for a political battle on the war against public educators here.  My children have had the good fortune to have been taught by some talented and thoughtful humans.  They’ve been challenged to think globally and with an eye toward the future.  I’m grateful my children have achieved what they have academically, and look forward myself to their continued growth.

Yesterday was my younger son’s last day of school, and my little one handed me his report card this morning.  The standards-based grading report has about a hundred elements on which kids are evaluated, and they don’t receive grades, but ratings of minimal, basic, proficient, and advanced.  It’s a lot to read, and I get why teachers wouldn’t have to write too much in the way of summary narratives anymore, given how they’re graded on these many different strands.  But, and I’m sure this is no surprise to you, I enjoy the narrative.

One of his teachers always includes a personal message, and I’ve much appreciated those few extra words.  They’ve always been positive, so yeah, obviously I am happier to read them than I would be from another educator less swayed by his quiet, mostly compliant charm, but I take comfort in knowing she really does know my child, strengths and weaknesses alike.

Her final message to my son and I hope to all of his classmates is a message all children need to hear.  I’ve included an excerpt:

I truly appreciated your curiosity.  Always remember you are powerful and you have the ability to change society. Also remember kindness matters and I hope you are always supported and that you support others too.

My end-of-the-year message to her and to all my children’s teachers is this:  Thank you.  I know you’re grading papers and entering grades at midnight or at 4:00 AM, because my phone pings when their grades come in.  I KNOW you’re doing so much more with so much less, and you’re doing much of that on your own time.  Thank you.  Thank you for being good stewards and citizens of the world, promoting that world-view and deviating from the script as discussions and important lessons present themselves.  Thank you for caring about my children, and letting them know they’re cared for.  This year especially, I thank you for caring for me too.  Your support and watchful eyes over my children during my husband’s hospitalization and my absence at home meant the world to me.  Your generous support of our family deserves every accolade (and a raise!).  Thank you.

I joked that I know exactly how my “What I Did This Summer” essay is going to go.  2019 is not gonna be a real barn burner of joyful travel escapades for us, but I sincerely hope my children’s teachers’ summers are filled with joy at every turn.  That they find time to rest and rejuvenate.  To borrow the phrase, I hope they too are always supported to the same degree our family has been.

Kids still write this in their yearbooks, and it tickles me no end.  So here’s my yearbook wish for you:  Stay cool!  I hope you have a good summer!  Friends always!  xoxo

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Just Visiting, Thanks

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Returned my husband to the hospital today as he begins the next phase in his recovery, the beginning of outpatient therapies.

How is it possible that he lived here for seventeen days, and doesn’t know his way around? Being here is so familiar to me, and though I didn’t live here myself, I did sleep here for a week of his stay. Just writing that feels like an archaeological dig, so long ago it seems from today’s vantage point.

I’m a tour guide for him here though. He has no memory whatsoever of his days in the surgical ICU, and almost none of the acute floor. He doesn’t know where his room on the neurorehab floor was, and he spent ten days there. If you’ve ever wondered whether IV drugs and hospital stays are disorienting, wonder no more.

I was petrified on day one the first few times I called requesting entry into the ICU, but that quickly became routine. I felt whatever is more than petrified when he was transferred to the acute floor. “Stranger in a strange land” captures it decently, but then there too became familiar much too quickly. While I felt he needed 1:1 nursing, that ratio was not how things worked on the floor. Eventually, and by eventually I mean within a half day, I was roaming that unit pretty reliably.

Being transferred to the rehab unit was the worst first day of school ever. We knew the expectations were that he’d work his ass off or be asked to leave. I did not think I’d ever feel comfortable with him there either, but before long, I was granted access to the staff-only supply room to get those styrofoam cups you only find in the hospital for water as he requested them. He was a model patient and I was a model wife. Well, the part about him is true anyway.

So today, staying for just a few hours is a spree, a holiday! I did still check in to the cafeteria to score my hospital beverage, a Kombucha, because apparently this is what I drink when I’m here and some habits die hard. My life was put on hold last month, and I have no sense of time, other than everything “before” seems like a long, long time ago, another lifetime.

But as I travel the halls to set up myself and my Chromebook in the courtyard here while he works, I recognize some distant, frightened, clueless expressions on the faces of people I pass. They are me not at all long ago. People pacing, people fighting back tears, people talking too loudly or whispering into their cell phones expressing, I imagine, their disbelief to their loved ones, and I realize it’s been just over a month, which is no time at all.

2019 MDA Muscle Walk

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For the first time since my son’s muscular dystrophy diagnosis, I will not be at today’s MDA Muscle Walk. (you may have heard a thing or two about my husband’s medical situation. . .)

$2680

I am grateful to my brother- and sister-in-law, Mark and Rhonda, who will be taking my boy to today’s event. I am beyond grateful to each and every one of you who answer the call when I ask.  $2680 is a lot of change.  It’s summer camp for kids who need a home among the only other kids who get it, it’s research lab assistants and physicians seeking treatments, it’s support for families like ours, stunned by this awful diagnosis.

The love and support we’ve been shown since diagnosis day is beyond belief.  Thank you.

The Self-Care Myth

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It’s a popular movement these days, self-care: You can’t take care of others if you don’t first take care of yourself.

It’s an ideal, and is a lovely belief people in my position would love nothing more than to practice, to feel “good,” to do things for your mental and physical well-being so that you’re “good” to take care of others. Execution of self-care however is, as the saying goes, easier said than done.

About two weeks into his inpatient stay, I made an offhand comment to my husband about having missed my hair appointment, and hacking my bangs.  Yes, hacking.  He told me he wanted me to take care of myself, and I believe the socially/psychologically scientific term “bullshit” was included in my response to him.  My self-care was staying by his bedside, learning all I could about how to care for him by observing and asking questions.  To me, learning how to take care of him was what I needed to do to be OK with me.

My best friend spent her Memorial Day weekend here (leaving her with, I am sure, a very different set of memories than the usual observances associated with honoring those who gave all).  I could not have brought him home without her help.  I felt like Tom’s direct supervisor, and Deb was the project manager.  We spent hours talking, mostly me rambling I’m certain, and we volleyed a few ideas about self-care and fun.

My initial thinking about self-care went something like this: What, I should go get my nails done or something and feel good about it?  And her visiting us in an hour of desperate need?  How could that be fun or self-care for her??

She suggested instead of the ridiculousness of getting my nails done (I never get my nails done, I can’t imagine how this became the hill I was gonna die conquering) or taking a girls weekend, to consider micro-instances of self-kindness. Like maybe reading a page or two of a book rather than lounging for hours as I may have once done. Something little, wholly embraced and enjoyed could be self-care, if even for but a minute.

OK.

Here’s what I’ve done, my micro-instances of fun and self-care. I really like micro-instances as a phrase, so get set for me to overuse the crap out of it.

  1. Make dinner. For the first time in three weeks I actually cooked a meal last night. It was good to do something totally normal. My people have bestowed incredible bounty to our family in our hour of need, so I have not needed to cook. I was so wrecked I couldn’t even manage making pancakes last week, so progress.
  2. Listen to my favorite songs.
  3. Write thank you notes.
  4. Do my hair and put on makeup. Someone gave me shit for doing my hair, but hey, the better ya look, the better ya feel, right?  There was no amount of concealer that was gonna help my eyes return from zombie alert status, but the hair I could manage.  Even with the greys coming faster and furious-er and roots that don’t stop (and not in a fun “don’t stop” kind of way. . .).
  5. Schedule and write down appointments.  Tom got three phone calls yesterday morning summoning his presence, and two of those docs we haven’t met yet.  Heck, we didn’t even know they were his doctors, but we will be there next week with bells on.  Organizing these items makes me feel better.

And that is about the sum total of my self-care regiment. BUT I have reached out asking for help in getting my son to his out-of-state baseball tournament, and me asking for help is much like finding a snowball in Hades, so go, me!  And go, Mom and Dad!  And go, Criollos!

But wait, you’re here to check on my husband’s progress, not my folly, so how about this?  Tomorrow morning my hubby visits the audiologist and facial trauma surgeon, then we gleefully skip across town to follow up with his neurosurgeon.  But of course it’s not gleeful, but maybe hopeful?  Did I mention I found a face-up penny as I tore from my car to the Emergency Department when I first arrived to this nightmare?  A sign, right?  Tom will actually call me from work if he finds coins on the street, it’s a running joke between us–our kids’ college fund!  A wise man told me to pay attention to the signs.  That the signs will tell me how to get there, but that I was in charge once I arrive even though I can’t control the uncontrollable.  I don’t feel very much in charge, but I am doing everything within my power to do the best I can with what we’ve been dealt, I truly am.  I am doing the best I can to let people help, I am.  It’s a good problem to have–having so many people on whom I can rely even though I’m reticent to ask.

Fingers crossed for tomorrow, good people.  xoxo

Oh, and #6 to my self-care list above?  Writing these random thoughts–it helped with MD, so let’s hope for similar results now.

Home Is Where The Dog Is

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Against all odds, and in immense overestimation of my medical caregiving knowledge/skills base, my husband was released from inpatient rehabilitation yesterday. Patient stay ranges from 10-21 days, and my overachiever graduated in ten.

My husband is a walking, talking miracle.

Next week begins the outpatient phase of his treatment, months of continued therapies, scattered with scores of follow-up images and physician visits. The specialists tending to him are indeed so highly specialized that each focuses on only the one area of their expertise. The ear guy really is just the ear guy, the facial trauma guy works with only the face/skull fractures, the neurosurgeon and her equally excellent NP look no further than his neck and spine. So, many appointments, but experts are what you want, so my bedside manner has moved to curbside I guess. We will be logging lots of miles this summer. Additional surgeries are on the horizon though, so there’s no end-date for some time to come. Progress though, progress.

My first real test will be changing his cervical collar today so he can shower. I performed sufficiently well practicing under the therapist’s watch yesterday–meaning I didn’t throw up, pass out, or further break his neck–but I’m so scared I’m gonna break him. You should have seen me driving home yesterday! And if you were driving behind me on the freeway, well, sorry about that, but I-94 is not the Indianapolis Motor Speedway.

My best friend Deb flew in to help us, and after bawling like a baby at our brief reunion, I’ve really done nothing but text her orders about where to drive whom to which event. I was supposed to visit her in Cali this summer. . . This was not how this was supposed to be! None of this is though. I hope you have friends like I do. And I hope she forgives me for being a bit narrowly focused these days. I hope you all forgive me that.

The homecoming occurred sans fanfare (I mean, I didn’t get the opportunity to hit up Party City for streamers and signage), but my sweet husband said he already felt more like a person being home, and less like a patient with a collection of injuries. Although I’m pretty sure he didn’t use the phrase “collection of injuries.” But these days my short term memory is less effective than his is, to be honest.

The kids were so fearful our dog would engage in his typical jumpy exuberance, and knock Tom down with joyful abandon. He was a good boy though, Caleb was.

Good dog, good dog, Caleb. Loyalty cramming itself between a chair and end table–close, but not too close.

Several have commented that Tom “looks much better” than they were expecting. He really does. What he’s achieved in 2-1/2 weeks is truly miraculous, and that is not overstating things one bit. His care providers deserve awards for their supporting roles in his progress–if I had Oscar or Tony statues, they’d each have earned one–but my husband is the star of his show. Day One. Check. Exhale.