Saying Goodbye to My Grandma Jean the Queen

Saying Goodbye to My Grandma Jean the Queen

The call came at 3am Wednesday. Grandma is dying. She probably won’t make it through the night. If you want to say your final goodbye, you should come.

The lights at grandma’s house were dim when we arrived, and the air was heavy. Short, labored breaths rattled out of her lungs, sounding like a child with croup. She lay tucked under blankets in a hospital bed in the middle of her living room; my cousin leaning over her, inserting morphine tablets under her tongue to keep her comfortable.

Being on hospice for the past week, the call had not been entirely surprising, though she had been so alert and responsive the prior few days that we had thought it might be weeks until the end.  But here we were, in the middle of the night, beginning our final farewells.  Some family members sat perched on the queen-sized bed near her hospital bed, while others lingered on the couch in the adjoining family room, taking turns leaning over her and whispering words of love and gratitude.

As morning crept closer, our hushed, sad party continued with an occasional comment, sniffle or laugh amid the whir of the oxygen machine.  One of my sisters planted herself solidly in the chair overlooking the hospital bed, a focused presence at grandma’s side, but I couldn’t seem to stay in one place.  I found myself huddled under an afghan with my aunt and cousin for a bit and then settled into a cozy spot on a red velvet sofa with my little sister snuggled under a down comforter.  I dozed here and there, always aware of the heavy breathing nearby, more alert during the pauses.  The on-call hospice nurse monitored her vitals but soon left, as grandma’s breathing seemed stable.

The morning light began creeping through closed shades.  Cell phones chirped from the kitchen, startling me awake, followed by the smell of chicken noodle soup that my uncle was heating on the stove for a 5 AM snack.  I crept over to the extra bed once again, where my cousin lay under the afghan.  I looked over at grandma a couple feet away and kept thinking that such a lively woman would surely sit up soon and tell us all we were mistaken and that she was not dying after all.

I then drifted off again and dreamt that grandma not only sat up, but began dancing around the room.  We embraced and I swung her around like a child, commenting on how light she felt.  We danced and laughed, and she asked me to make her tea.  And then I awoke.  And heard her shallow breathing and saw her thinning arms and still body, and I swallowed the lump rising up from the pit of my stomach.

At 8 AM another hospice nurse arrived, the same angel who was there at the end with my grandpa 4 years ago.  She commented on the rapid changes in the past 24 hours and confirmed that Jean was, as we suspected, in the active stage of dying.

But she wasn’t quite ready to leave us that early in the morning.  With just a handful of her 9 children there, the nest wasn’t nearly full enough yet.  But slowly, on planes and in cars, the ducklings began returning home.

I went home briefly to shower and grab a few things, but I was nervous leaving. Since I had said everything I wanted to say to my grandmother over the past few days, I don’t know why I felt so strongly about being there at the very end.  I think part of it had to do with wanting to not only be with loved ones but also to observe and tell my family’s story.  I wanted them to be able to look back and see how beautiful they all were in these moments; how they came together as this powerful entity of sorts.

I think a couple people worried there were too many people in the house for a dying woman.  Perhaps there were. I don’t know if there’s a right answer, just different perspectives I suppose, but it was quiet and respectful, and it felt right.  The house felt full, yet there weren’t large groups hovering over her all at once. And for a woman who chose to have 9 children and was accustomed to the pitter patter of children, I think saying goodbye in an empty, silent house would have felt strange and even lonely.

With such a variety of people in a big family, it’s interesting how everyone deals with the process of saying goodbye so differently.  Most seemed to gravitate toward the familiar;  my aunt cooking, my dad cleaning, my uncle out mowing the lawn, me mulling over words to describe it all and sneaking into the bathroom to type quick phrases.

Those last moments of goodbyes will forever be etched in the creases of my mind. The graying of the sky as thunder rolled and lightning flashed bright.  The smell of sauteed onions and a meatloaf “grandma meal” that my aunt had baking in the oven.  The constant, whirring sound of the oxygen machine like that of a generator; methodic and seemingly in sync with the constant back-and-forth motion of the metal chains holding the front porch swing as various family members took outside breaks in sticky, humid air.  Men sneaking to the porch to catch tidbits of the Blackhawks championship game playing quietly on an ipad.

And those last few moments….
The evening sky and full bellies.
The image of my twin sister through the large front window rocking her newborn on the porch swing contrasted by the frail body on the other side of the window, her children surrounding her, lulling their mother through this last transition of life.

swing

Word circulated through the house that her breathing had changed again, and with few words the room filled, and we listened and waited once again.  And then as if quietly slipping out from the party, the oxygen machine was silenced and my uncle announced, “She’s gone.”  A peaceful, quiet relief.  Silence followed by sobs.

The last 2 ducklings trickled in from the airport run, more sobs and goodbyes, and soon the 9 encircled their mom.  With candles lit around the room, grandkids standing behind our parents, my mom, the eldest of the bunch, led everyone in a blessing.  She blessed each part of my grandma’s body with a prayer she found, “Mom, we bless your hands. Your hands have been a source of welcome and of help in countless ways.  We offer our gratitude for all that these hands have done.” After each rote part of the blessings, she would leave space where anyone could call out specific instances where grandma used her hands, feet, etc in our lives. We laughed and cried as different people called out memeory after memory.  After each part, we repeated the phrase, “You will always be a part of our hearts.  Go in peace.”

Then we said a short Hail Mary and Our Father, and it was the most intimate time I couldn’t imagine with 20+ persons.

At first I felt sad that we hadn’t been able to do the final blessing and honor my grandmother in her last moments, as I think my mom and others had pictured.  We had done a shortened version of this blessing (without the inserted memories) the previous evening, while grandma was still breathing.  But thinking about it now, Grandma Jean was still in the room with us, and we didn’t have to shout over the whir of the oxygen machine that had been on while she was still breathing.

People have been reminding me that she lived a good, long life and that her love will live on.  And that’s true and comforting. Yet there is this gap where this large presence used to fill space.

Scenes of playing with my grandma as a child and then having the privilege of watching her with my own children… giving Lucy her first bath as an infant and chasing Elliana around her fairy garden.  There is a part of me that dreads the school year starting up again because visits to grandma Jean were part of Elli and I’s weekly routine while Lucy was in school.  And they were far from routine– they were as fun and lively in her 80s as I remember them being in her 50s when I walked there after school for chocolate milk.

Grandma Jean, you are a queen.  You will live on in your children and grandchildren and great-grandchildren.  We have a lot of space to fill.

image

News Flash

It’s been almost a full month since Joy or I have posted anything.  Shame on us! It’s not that we haven’t thought about blogging, but we’ve both been a bit pre-occupied.  Also, neither of us like to post out of any sort of obligation.  We like to write when we have something worthwhile for our readers.  Today I have something worth mentioning on the blog.  I’M PREGNANT!

Perhaps you’re wondering why I am wearing a mask in this photo and why the pictures to the right look blurry.  It’s not your vision (or perhaps in some cases it is…) It’s smoke.  I live up in the mountains and we’ve had wildfires over the last 4 weeks, which has caused a tremendous amount of smoke in our county.  Between morning sickness (which I think is misleading considering the nausea often lasts the entire day – not just in the morning) and the smoke stacks, I’ve been a bit distracted. But I’m happy to report that I am now 14 weeks along and feeling so much better, and the wildfires have subsided as well.

I will have more to share in a couple of weeks following my eye appointment in Seattle along with my first day of cane training.  I need to get as much done as I can before baby number two arrives in spring!

 

 

Accessibility Software Giveaway (first-ever doublevisionblog contest!)

To end our mini-series on “parenting”, we’d like to offer a chance for our readers to win a free reading assistance software, Kurzweil 1000 version 7, $1000 value (this version was released several years ago, but can be upgraded to a newer version if desired). The software is new, in package, and still shrink wrapped.

Here’s the challenge… this is for either parents of kids/adults with visual impairments or kids/adults with visual impairments to answer:

Kids/Adults:  Share a story/memory about how well a parent or teacher handled a situation involving your vision.

or

parents:  Share a favorite memory of how your child handled their vision challenges with humor, wisdom, a positive outlook, etc.

Email your submission to joy@doublevisionblog.com by Friday, March 2nd.  Submissions can be brief or detailed– it’s up to you!

We will post our favorite one as well as a runner-up to doublevision and will send the winner this software.

Progress

Yesterday my vision showed improvement on the peripheral chart for the first time.  I was hesitant to write about it yesterday because I wanted to have a second fields test to confirm the progress.  This morning, I took another visual fields test and knew without a doubt as I was taking it that my vision had improved.  Dr. Yu confirmed what I already knew by showing me the progress I had made on the visual chart.  The intense emotion I felt at that moment caught me by surprise and I began hugging my husband Torrey while tears streamed down my face.  I looked up and he was crying, too.  There were lots of other patients in the waiting room at that moment and they were sharing in my
excitement.  I started to laugh to myself as I thought “most people would be crying with sadness if their peripheral vision measured the same as mine right now, but here I am crying with happiness just to have this small increase in peripheral vision”.   Perspective is everything.

I’ve often described my vision loss as a giant puzzle with the border and center in place,
and lots of pieces missing throughout the rest of the puzzle.  Some of those pieces have been filled in, but there are still a lot missing and that will continue to challenge me in my daily life.  I want to focus on being grateful for the pieces that are there now, and I am anxious to get home and see the difference it makes in my daily life. I am hopeful that my fields will continue to increase as treatment continues. I will come back in 2 to 3 months for a second round of treatment.

I had a lot of doubts when I started this treatment on Monday, and had practically decided to just head home by Wednesday when I wasn’t seeing any results on the charts.  But I received a number of inspiring quotes, verses, emails and messages from loved ones that encouraged me.  I am finding it hard to wrap my Western brain around how this Eastern medicine could bring life to tiny cells in my retina that have been inactive for years.  How could ancient medicine show more results than modern medicine in treating RP? It seems researchers at John Hopkins University are wondering the same thing. A research study regarding Dr. Yu’s treatment is currently awaiting funding.

There is so much more to write – so much more I want to share about this doctor, this treatment, and the other patients I’ve met.  I am both physically and emotionally exhausted at this point, and want to be well rested for my final day of treatment tomorrow. Plus, I fear that too much detail will start to bore my family and friends, and yet I know for readers with RP, there are many more details they want to know.  Please feel free to correspond with me individually for specific questions: jenlandgraf@msn.com.

“Normal”

Ever since I can remember, I’ve wanted to be “normal”.  I’ve wanted to just blend in and not make a spectacle of myself (which is pretty hard to do when you’re running into poles and such.) I’ve literally pictured what my life would look like if I was “normal”, and by normal, I of course mean perfectly-sighted.  I would live out in the country– or maybe I wouldn’t– but I’d at least have the choice to live in the boonies because the “normal me” could drive.  I’d have some job that required a lot of driving– like a pharmaceutical rep– or maybe I wouldn’t– but at least I’d be able to choose a career that involves driving.  I’d play beach volleyball– or maybe I wouldn’t– but at least it’d be an option on a hot, summer day.  You catch my drift;  “normal me” has a lot of options.The funny thing is that most of my “normal me” fantasies don’t envision my life all that different from what it is now– I’d still be married to the same amazing man, have the same sweet children, the same supportive friends, live in a similar house with a similar career path, but I’d be a much “better me”.  I’d look better (because I’d be able to do my makeup better if i could see it more clearly, of course!), act funnier and wittie (because I’d see funny things all around me), be a more-together and fun mom (wouldn’t lose a thing if I could see!), be more outgoing, athletic, involved…… I’d just be me with a little boost.Okay, so “normal me” is beginning to just sound like “perfect me”.  Definitely not saying I would be perfect, but I really can’t help but think I’d be BETTER.  I know that most people have their “thing” that makes them feel abnormal– the family they grew up in (probably half of America for that one), some physical trait that they don’t like about their face or body, some secret about their past, some act that they wish they hadn’t done or hadn’t been done to them…… there are probably very few people who would say they feel “normal”, whatever that word really even means.

But if so many people don’t fit into being “normal”, why do I sometimes feel like I am the only one who sticks out as “not normal”?  And if I really do enjoy most aspects of my life, why do I daydream about changing it?  Let me re-phrase that:  why do WE daydream about changing it?  Based on many of the RP chatrooms I’ve visited, I know that this is something we all struggle with, and I don’t think daydreaming about being perfectly sighted is necessarily unhealthy.  But I do think that we should pay attention to how we view ourselves and the vocabulary that goes along with those views, especially the “n” word.