Posted by: Kate | April 5, 2010

Alternative Easter

You all can have Easter, with whatever traditions and habits you fill Easter with.  I’m sure that next year, I’ll be back into the Easter swing of things, with the eggs and the candy and the ham dinner.

But this year, I celebrated a day early.  I didn’t want to celebrate early; I would have been just fine with following the trends of years prior, especially since that implies an ignorance of all of the things that could and did go wrong in March.  But since March happened, and things went entirely haywire, I was several steps beyond grateful to be able to gather that family together at any time, under any circumstances.

The setting was the wildly uninteresting and uninviting front entrance area of the long-term acute-care hospital which has been my home for the past week.  It offers a stone bench, some sparse grass, a sidewalk… and that’s about it.  But with the help of a blanket and a beach umbrella, some TV trays and some camp chairs, my husband and mother were able to create a pleasant little gathering spot.

Now that I think of it, Saturday stretched very long and filled itself very busy, compared to that which has become normal for me lately.  I had the typical struggle to wake up; I have a persistent insomnia that I blame on several things, such as not being home, the night sweats and hot flashes of menopause, checks for vital signs, a noisy neighbor… a hospital is just not a restful place.  I finally get tired around 2:00 or 3:00 in the morning, and then I sleep pretty well until 9:00 or 10:00… or, I would, if it weren’t for breakfast delivery and blood draws and room cleaning and several items from the previous list.  So I dredge myself awake and blink like an owl on heroin for a while, and eventually I start to feel like myself for a while, until sometime in late afternoon when my energy flags but any nap is, once again, constantly interrupted, and in general my sleep cycle is about as messed up as it can get.  I actually fell asleep in the bathroom the other day, only for a few seconds so I didn’t do myself any bodily harm or permanent embarrassment, but I think it’s because it’s the only place where I can have quiet and solitude.

Anyway, I dragged myself awake on Saturday morning and waged the expected thrice-daily battle with my meal tray, attempting to ingest some fraction of the protein that would make Donna the Dietitian happy.  Then I pressed the call button to find out who my aide was for the day; the nurse had already been in for morning meds, so I knew who she was, but I hadn’t yet seen my aide (each patient is assigned one of each, in theory such that the nurse can be left alone to do the medicine-related things and the aide can fetch ice and change sheets and do the other things that are important but not medical… in reality there’s a lot of overlap).  Some of the nurses, and some of the aides are – and I’m sure this applies everywhere – just so intimidating or rushed or flustered or any number of other adjectives that you don’t want to ask them for anything at all, and others are more approachable.  Happily, I had an approachable aide on Saturday, Alice, and she was willing to help me wash my hair.  I’m not allowed to shower with the VAC dressings here (I could at MGH, not here, rules is rules), so I’ve been taking a lot of bird baths in the sink (go ahead, take a moment, picture it… but be generous in your mental images, OK?  I’ve been through a lot, the least you could do is imagine me as a pinup model).  But washing my hair is harder, assuming the goal is to actually keep those VAC dressings – or anything within a five-foot radius – dry.  Alice was willing to help, so I could face the day as clean as I can get myself here.

My dad and stepmom arrived around 11:30, and brought two very important things.  First, of course, is themselves.  They’re both very good at the low-key hospital chatter, willing to let the topic get deep if it wants to but knowing how to steer it away before I get weepy or unduly angry.  And they’re willing to tell me about their own lives, which is a big deal, because lots of people come to visit and want to know the details of my stuff, and it’s easy to talk about myself and I talk slower than usual, so it very quickly becomes The Kate Show, and they leave and I realize I just babbled about myself for however long.  That’s what this blog is for, it’s not how I want to spend visits with loved ones.

Anyway, second, they brought me a frozen Coke.  This has become my new obsession, and those willing to remember and bother to stop and pick me up a frozen Coke on the way to a visit can instantly earn my eternal affection.  I’m not entirely sure why; I liked them before, but what I feel now is far stronger than like.  I think a big part of the reason is that it’s one of the first foods I saw “from the outside” after being moved out of the ICU.  I was shifted to the general surgical floor, and a little boy, maybe 7, walked by carrying one.  And I tell you, if I had not been having serious gastrointestinal issues on top of being only about 4 days post-coma and thus not exactly spry, I’d have chased him down, knocked him over, and taken his frozen Coke without a twinge of conscience.  I’ve convinced a number of visitors to smuggle them in since, and each of these people holds a special place in my heart now.

So, we sipped and chatted and had our visit, and around 1:00 Willem called to say they were downstairs and ready for me.  I wouldn’t have been able to find “downstairs” if my life depended on it, but my dad and stepmom had left the facility several times, so they knew where to go.  In other circumstances, it probably would have been horribly awkward, dad with new wife coming down and seeing former wife, but my parents did a pretty good job with their divorce.  They’re not exactly each other’s number one fan anymore, but they can coexist amicably enough.  One more thing to appreciate about my life.

I needed to bring a wheelchair with me, both to let the staff feel comfortable knowing I had something to use for balance if needed, and so as to have a place to sit outside.  I’m certain I could sit on the ground but not certain I could get up again, my quads and hamstrings are still very weak.  But I did not want to be wheeled out, I wanted to show Emily and Jacob that I could still walk just fine on my own.  So I pushed the empty wheelchair, and they both noticed me in plenty of time for it to have the intended, reassuring effect.  Later, Jacob asked why I was sitting in the wheelchair, and I told him it was because the other two chairs in my room were too heavy to carry out; this made perfect sense to him and helped add just a little bit to that list of reasons to believe why Mom might actually be OK.

Isaac was asleep in his stroller, which was a very good thing, because it let me greet the big kids – and grown-ups – first and without as much distraction.  Jacob was first in line, and I would not have had the heart to make him wait.  He just scampered and giggled and grinned while he waited for me to get the wheelchair locked in place, and his whole face was just lit up in the brightest, happiest little-boy smile.  I sat down, and he dove in for a hug – and not one of those perfunctory hugs that kids give when they know they’re supposed to but they’d really rather be doing Legos, but a real, long, clingy hug.  Sometimes you just need it.

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Emily was next, and she was a little less clingy – she is moving on to a new obsession, with rocks and minerals, and thus spent the vast majority of the afternoon crawling around this little lawnlike area looking for pebbles – but you can tell by the expression on her face that this is a little girl who is carrying around far more than her share of stress and worry right now.

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These kids need me home.  They need it even more than I need it.  There will be some very serious tantrums and meltdowns – by me – if my discharge date is delayed.

And then, of course, there was Isaac.  Such a sweet, warm, snuggly little ball of rightness, he just fits right in my arms where he’s supposed to and makes all the right little grunts and squeaks and sleeps just as soundly as, well, a newborn.  We had some good time together, Isaac and me.

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Willem was determined not to miss another holiday this year; we had already missed St. Patrick’s Day, which happens to be one of my favorites because it’s so simple and not bogged down by materialism or family expectations.  You wear green, you eat corned beef and cabbage, you smile a little extra.  Lovely.  So as Easter loomed and I was still in the hospital, he was determined not to miss this one, too; he and my mom boiled eggs and packed up water and vinegar and egg-dye kits, and set up TV trays right on the lawn of the hospital so that we could all dye eggs together.

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I had asked to start doing it at about the one-hour mark, and they all laughed at me because I was busy feeding the baby at the time.  “What?  Kate?  Trying to multi-task?  Can you imagine??”  And I laughed along with them, and let it slide, but somehow it seemed important to me that it happen sooner rather than later.  They started to set up shortly after, but the little color capsules had all broken and melded into one single packet of colorless blech, so there was a delay while my mother went to the store for another package.

Thus it was at about the two-hour mark that they were ready to start dyeing eggs, and we learned a very important lesson: my tolerance, right this moment, for the multi-sensory overload that happens when you go from a quiet, beige hospital room to a gorgeous April day, is just about exactly two hours.  I very suddenly was light-headed, and nauseous, and a little weepy, with difficulty paying attention to other people’s words and thus trouble responding or making decisions.  I went from perfectly content to completely overwhelmed and scared in the space of about five minutes, and so Willem had to take the baby and Mom grabbed the wheelchair, and we headed back to my room, this time with me riding instead of pushing the chair.

We stopped so I could hug and reassure each kid, just to remind them that sometimes they get overwrought, and now it was my turn.  They seemed to understand, and there was no crying or fuss; it helped that Jenny showed up just at this time, so she was able to stay with the kids and help with the eggs (at least I did complete one egg before my brain started to fry) and Willem and my mom could get me inside.  Sure enough, as soon as I was back in the quiet and boring of my own room, with a little water and a small snack (yes, Donna, it was graham crackers and peanut butter, there was protein), I felt endlessly better.  But not enough to risk running back downstairs to try and do more eggs; one close call was enough, and I think I had just come as close to fainting as I have ever come in my life.

So the ending could have been better, but the rest of the day was really, really lovely.  And the fact that today was entirely free of Peeps and hidden eggs was more than balanced out by yesterday’s goodness.

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Responses

  1. (((((((((((HUGS)))))))))))

  2. More {{{{{{{hugs}}}}}}}

  3. Oh, Kate, I teared up at the pictures of you with the kids. So beautiful.

  4. Oh, gods, that brought tears to my eyes, especially the shots of you and your wee boy and your man. You’re so brave, Kate…sometimes just opening one’s eyes in the morning, knowing it’s going to be another very, very difficult day, is the very definition of bravery, and you’re just plowing right through it. Must be your determination not to let anything take you down, even if it means you’re just barely moving.

    Still in our prayers every day…and that’s sincerely meant, not just lip service. Active prayer to an active diety…powerful stuff.

  5. Sorry, misspelled deity!!

  6. Easter rebirth, indeed! What a wonderful scene of renewal and getting on with your new life! A little fragile, a lot hopeful, and gaining strength every day–it comes through the pictures so strongly.

  7. I’m so glad you were able to get outside and visit with your children and family. More prayers from Denver for a full recovery and healing for you AND your kiddos. You are a strong and inspiring woman.

  8. So glad you got to see and hold your babies.

  9. I am so glad you were able to have the time with your family. And I’m keeping my fingers crossed that your next post will be from home.

  10. Easter blessings indeed. I think about you guys every day. May you continue to strengthen and heal. ❤

  11. i keep you and your family in my thoughts and am glad you continue to heal and gain strength.

  12. Wonderful! and you can last 2 hours interacting very intesely with your loved people before you crash. I wonder what’s in coke that you need…my mother longed for cold milk when she was in the hospital, she hated milk but her body needed calcium. I don’t remember her ever drinking milk, though she sure did make ME drink mine! Ugh.

  13. You look great Kate, what a wonerful day! ((((Hugs))))

  14. YAY! So happy you got outside and got to hug everyone AND hold Isaac. I’m pulling for you to get home asap and find a new normal surrounded by your family. 2 hours is a tease…but a step in the right direction.

  15. Seriously, you look amazing for someone who has been through hell in the past month. How do you pull that off?

    SO glad to see you with the kids and Willem. Time home with you will be the greatest reassurance they can get, so I am keeping my fingers firmly crossed that things go as planned tomorrow.

  16. What beautiful pictures…can’t wait to spend some time checking out the full complement on Flickr…

    Thanks for sharing the details of your beautiful day with us.

    Love you.

  17. You look good just oh so good.

  18. Glad you got to see the kiddos. And you not only look clean you look awesome. Amazing what a sponge bath can do. LOL.
    Really you look great it helps tremendously to see your picture and see your smile. Hang in there and I hope tomorrow you get to to home.

  19. I know you are stuck there a bit longer, but this post just made me smile. You and the kids look wonderful. I’m glad you had a wonderful day.


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