Katie Brack Day

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So… I know we all have them.  If you don’t, you will sooner or later.  (And consider yourself very lucky if you don’t already.)  You know them, those days we all dread…those silent, looming anniversaries of some terror, some horror, perhaps the loss of a loved one.  Maybe it was the day you were told you had cancer, or that your loved one was killed unexpectedly in an accident, or the day you realised you’ve lost everything you’ve ever worked for.  Your spouse was unfaithful, your dog died, another war started and your loved one didn’t make it back alive.  So, so many things in this life can and do go wrong.  And we go through the stages of grieving, and we gradually recover, because we are a resilient people.   But there’s always that day that comes around once a year, that day on the calendar, that marks for you a space in time to stop and remember.  To grieve anew, to honor what was lost, to put into perspective what time and change has wrought.  Everyone deals with that day on the calendar differently.

I have been radio silent the past two weeks for that reason.  (Well, that, and partly because I was on a Carribean cruise soaking up some sun–I really was radio silent and unable to write during that time. )

This past week marked the 21st anniversary of when my beautiful five year-old goddaughter passed away unexpectedly in my home.  A whole person’s drinking age life-time ago.  I have had three great kids of my own, helped care for numerous foster kids, have taken care of oh-so-many kids in the healthcare system as a nurse, and still the ache remains.  Oh, time has greatly helped heal the wound.  Now the anniversary is more of a tug at an old scar vs. ripping my heart open again, like it used to years ago.  The way I remember the day is different now than what it used to be–I don’t fall to pieces anymore, for one thing.  I still cry a few bitter tears each year, and we still plant flowers in her “memory garden”, and my hubby makes sure I know he remembers too.   I message her parents, who are divorced now and live in different states than we do.  We check in on each other, make sure the other is doing okay.  And I look at her scrapbook, and remember all the beautiful, wonderful things about her.  All the things that made her so uniquely “her”, that made her so sweet and loveable, despite her severe level of cerebral palsy.

To this day, I have a hard time talking about the details of that day.  We’ve since moved to another state, where no one knew her, or what happened.  It’s easier to not talk about it at all.  But I made a promise to her and her parents.  That her short little life was not lived in vain, she did have a purpose, and I will always strive to keep her memory alive in whatever way I can.  I tell my friends and coworkers about her.  I tell my kids about her.   When we go “back home” to visit every couple of years, I take them to the cemetery with me to visit her.  (And then I choke up and start crying and I whisper to her I will see her in heaven someday, and I have to leave before I’m a complete wreck.)

I suspect you know what I’m talking about.  Your scenario might not look the same.  You might handle grief totally different than I do.  But we all have those memories, those moments in time that stand out starkly in our minds.  It’s one of the things that bonds us together as humanity.  Just as a smile is universal, so is crying and shaking your fist at the sky.

Whether it’s been two years or ten, or way longer than that, grief and loss never totally go away.  We are grateful that the sharp sting fades away, and the jagged edges smooth away like rocks worn smooth in a stream.  But that takes time, and time means days and weeks and years.  Which, of course, means anniversaries that roll relentlessly by.

If you still struggle with the anniversary part of the grieving process, I encourage you to start something new to carry on as a tradition for years to come.  Something that lets you vent your grief in a positive way, to honor your memories, to help you get through it.  And when it’s come and gone, and you can breathe a sigh of relief again, whisper a prayer of thanks that it won’t roll around again for another year.  And hopefully by then, it will be easier to deal with.  Trust me, I’ve been there.

Rest in Peace,  KatieBug,  I Love You

4-25-93  —  6-6-98

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                            Nurse Ames, RN

Peg tubes–good, bad, or ugly?

Life is a balance of holding on and letting go.”–Rumi–

She’s 66 years old, she lives in a group home, she has cerebral palsy and MR. She’s been in and out of the hospital this past year several times, each time declining physically. She doesn’t speak, she just points to what she wants and makes hand gestures. I’m only 5’2″ and when I help her to the bathroom, I tower over her height-wise. She is tiny, but her personality is huge. We nurses know her normal by now–she’s happy, grins ear to ear, wants to give everyone hugs. If only all of our patients could be that way, right? Today she is back in the hospital. They have placed a peg tube because she can no longer pass a swallow study. She is hurting, despondent–not her normal self at all. Her mouth is dry because she can no longer eat or drink. Her stomach is trying to get used to bolus peg tube feedings, which is stretching her stomach more than it’s used to. The canned liquid we give as total nutrition is causing her gas. Not only are these things causing her pain, but also the new peg tube site itself is still quite sore. She’s never been on pain medicine before, but the need for it is there now. So she sleeps a lot more than normal, is much less active. This leaves her wide open to a variety of complications–bed sores, pneumonia, blood clots in her legs, etc. However, at least she is now hydrated, and getting the vital nutrients she needs to stay alive. She doesn’t have to choke on her medicine, food, or drinks anymore. And she no longer needs to worry about aspiration pneumonia every time she takes a swallow.

Making the decision for end-of-life care is never easy. Nurses have the luxury of an objective point of view.  Meanwhile, family members are torn by the possible consequences of their decisions, no matter what that decision might be. Nurses have seen the same scenario enough times to guess the most likely outcome, whereas family members are dealing with uncharted territory. It’s a tough call to make, and I’ve been on both sides of the equation.  As for peg tubes themselves, I have seen some people thrive and regain health with them, while others just sort of wither away regardless. Are we giving loved ones another shot at life? Or delaying the inevitable while their quality of life further declines? I don’t know…there’s definitely no easy answer to that.  Every situation is different, every patient, every family group…All I can do as a nurse is provide information and be as honest as I can be when difficult questions arise.

As for my little peg tube patient, I hope she’s doing well again back at her group home.  I never got the chance to see her smile return before she was discharged.  I do know she was surrounded by love.  Her caretakers and other residents often visited her, and she seemed to have a great support system.  If anyone has a chance at returning to a better quality of life, it would be her.  I hope she gets her smile back.  

                           Nurse Ames, RN