Five Minute Friday

Five Minute Friday -Create

Joining Five Minute Friday before heading out to our camping trip!  This week’s prompt is “create”.  So, here goes:

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This weekend I aim to create memories.  I am living a life with my daughter who is on borrowed time and although I certainly hope and pray she lives a long and healthy life with her transplanted heart, I also try to be cognizant of the fact that I have no guarantees.  Now, no one really has any guarantees (see this horrific story about the dad and 11 year old son who lost their lives in the Nice attack yesterday), but my awareness of this is just a bit more acute with my DD.

Many of my favorite memories from childhood are those on the road.  I didn’t always have the most pleasant of experiences at home.  My father was an alcoholic, but for some reason, when we were traveling, he was usually pretty good about staying sober.  I remember my mom reading to me (for some reason, I really remember reading Ishi one year on our way to Wyoming), listening to the AM radio as we drove through darkness on unfamiliar roads, waking up in a new place each morning.  I remember one time in Arizona waking to the braying of a wild donkey (burro?) outside of our van at a rest stop.  I remember going to museums and old ghost towns and zoos in other cities.  We did a lot of things on these trips and they always felt like an adventure.  We didn’t have super specific plans.  There were no cell phones with GPS so we went by maps and stopped at Visitor Centers.  We camped at rest stops and KOA campgrounds and state and national parks.  And all of those trips created fond memories of family.  That is what I want for my daughter.  No one’s life is all good memories.  She will have her share of hospital and medical memories that will not be great, but hopefully we can create some others that will be her true place of comfort and joy.

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Simplicity Sunday, Uncategorized

Simplicity Sunday – No such thing as “simple”

I am quickly coming to the conclusion that there really is no such thing as simple.  According to the Oxford Dictionary, simple is:  easily understood or done; presenting no difficulty.  Not much about my life seems easily understood or done.  Much about my life presents some difficulty.  But, I’m not sure this is all bad.  As the saying goes, nothing easy is worth pursuing.

The last few weeks have been tough.  I didn’t sleep particularly well before leaving for the pre-hospital trip, getting grading done and the house cleaned up.  Then there was the hospital, where I didn’t really sleep at all one night (in the CVICU), barely slept the next night and slept on and off the next couple of nights.  I slept a bit better back at home, but Bean was still up every few hours complaining of pain or needing to move.  My husband left for five weeks a few days after we got home and soon after I left my DD at my in-laws to go to a conference in San Diego.  The first night, my MIL called me with Bean scream crying in the background, saying she was upset because she had forgotten to call me to say goodnight.  That was obviously not the reason she was scream crying.  She was scream crying because she wanted me THERE, with her.

My mom guilt was extremely high.  I should not have left her so soon after she went through so much.  I’m afraid her anxiety will come back due to this craziness.  How important was this conference (well, it was pretty important because I need it to work on this year-long project I am working on)?  Could I have figured out a way to bring her here (tough one…it is expensive and difficult logistically)?  Should I just give up on making it all work (probably…let’s face facts)?  From there, things got much better and she was fine.  So, on the roller coaster of mothering, I was on the short, fun drop instead of the upside down, traveling way to fast to be comfortable part of the ride.

We’ve been home now for a little over a week and things are going pretty well.  Although, she missed two days of VBS this past week with a fever, so there was a bit of panic for that.  But, it must have been some 24 hour bug because it was quickly gone.

I also didn’t get one of her medications in the monthly delivery, but when I called the pharmacy they said the doctor had not sent a refill.  When I called the doctor, it was a problem with pre-authorization.  And it turns out, we can just buy this stuff over the counter for about the same cost as the copay (maybe cheaper if I can catch it on sale).  So, we took care of that issue.

So, this is what I mean by NOTHING being simple.  But, I think that gives me all the more reason to simplify whatever parts of my life I CAN simplify.  So, decluttering my house (I feel like I have rid myself of VOLUMES of stuff in the past six months, but we still have VOLUMES AND VOLUMES of stuff left.  What is with that?!?  Decluttering my schedule and establishing routines so I don’t have to constantly think about what I should be doing next.  I want to surround myself with things I love and enjoy and that make me feel peaceful and content.  Then, when the inevitable complexity of life pops up, I can not only survive, but thrive.

I am quickly approaching my 48th birthday (what the heck?).  I want to live up to what this blog title suggests…being more in my 40s.  I have a limited time to achieve that though.  A very limited time indeed.

Tuesday Truth

Tuesday Truth

Today is Tuesday.  And in that, we can find some some truth.  I would like to share some truths I’ve realized today:

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First, others really can steal your joy, even from far away, if you let them.  And I let them.  I am currently at a teaching conference and really enjoying it.  I am in a nice hotel room in San Diego, right on the Marina, eating really good food and feeling excited about making changes to my classes.  But, I received an email about an issue that has nothing to do with what I’m doing here.  Something that was somewhat outside of my control, but is still within my realm of responsibility.  And more than the issue, was the way the message about the issue was delivered.  Backhanded insult.  Passive aggressive attack.  Something to highlight past mistakes instead of current successes.  And immediately, my mood changed.  I was no longer enjoying the conference, but instead was caught up in a defensive response and feeling less than adequate.  My joy was stolen by that email.  I didn’t speak to anyone.  I dealt with the issue as best I could.  I resolved myself to “fix everything and make it perfect” so that I would not have to ever deal with this passive aggressive attack again.  But, really, that isn’t possible.  Mistakes happen, especially when you are dealing with a pile of crap on a plate that is way to small.  So, I’m not going to be perfect.  Instead, I need to figure out how to not let these passive aggressive attacks steal my joy.  I have to figure out how to recognize that the insults are short lived and the amount of things I do are long lived.  I need to take the delivery and dismiss the insults while dealing with the issue.  But, it isn’t easy.  It is NOT easy.

Second, San Diego is beautiful.  If you’ve ever been to San Diego, you know this truth.  There is beauty everywhere one looks down here.  The water.  The weather. The architecture.  The art.  The boats.  The surrounding environment.  It really is gorgeous.  I think we’ll be coming back here for a family vacation at the end of summer.

Third, having a home town that I love.  I really look forward to going home.  I love my home town and it is so nice to love where you live and where I work.  Even if you don’t love everything about your job, being happy to be where you ARE in the world is important.

So, what’s your truths for today?

Tuesday Truth

Tuesday Truth: Life in the ICU

This place is familiar, but also somewhat unknown.  I believe it is a safety mechanism in our brains that protects us from remembering the full experience of unpleasant places.  Here I sit in a CVICU room, something I’ve done for months of my precious daughter’s seven years of life.  It all looks somewhat familiar.  The myriad of machines that beep and pulse and beep some more.  The bed that is at once, highly technical, yet still totally uninviting.  My daughter, with the tubes and tubes and more tubes coming out of what seems to be every area of her little body.  She has grown a lot since those first days in the PICU and CVICU as a premature four month old, but she is still a similar vulnerable child who needs lots of love and care and wears her anxiety like a hated piece of clothing, trying to cover it up, while knowing that at some point it WILL be seen by others.

This is a good visit.  A quick in and out – one night only.  But, it is a very, very long night.  There is never peace in an ICU (really, any hospital room), but this night is not so good for someone else, so the lack of peace is even more pronounced.  There is an emergency.  Everyone is gathered around one room.  At some point, privacy screens are put up and doctors and nurses suit up and there is some procedure being done.  Right there in the ICU.  Usually, that means there is no time to move to a different location, which is never good.  This morning I dreaded walking that hallway.  Fearing the sight of an empty room.  But, there was a patient there.  Still surrounded by a number of doctors and nurses, but there, with machines beeping and pulsing and beeping.  So, at least that was good news.  But, from here, who knows?  The child next to us screamed at night about being “firsty,” but each time he had something to drink, he would go into a coughing attack and sometimes throw up.  So, they put him on “NPO” meaning no matter how “firsty” he would get nothing but a little pink swab soaked in some water to rub around his mouth.  I am thankful that my daughter was so little when she was suffering the literal heart ache of cardiomyopathy.  If not for her sake (as I’m sure she was quite often thirsty or hungry or hurt when she coughed), for mine. I did not have to be the parent who tried to rationalize this seemingly torturous behavior of withholding vital needs to their child.

My daughter is whiny.  She wakes up every hour or so to call my name and has me come from my uncomfortable perch in the less-than-cozy rocking chair to rub her arm or simply remind her she is not alone in this place that could easily be mistaken for a house of torture.  She is in pain at times.  She tells me she wants to go home a few times.  But, overall, she is able to be comforted and will go back to sleep, at least temporarily.  I am exhausted.  And somewhat resentful.  It is not unheard of.  Why us?  Why do WE have to go through this AGAIN?  Then I remember the alternative is not having the opportunity to get better, and it all gets put in perspective.

The doctors and nurses go about their business.  They are not unconcerned, but deal with the pain and suffering all around them with professionalism, compassion and as much happiness as is possible.  Some are downright joyful and you wonder how they do it.  It takes a certain type of personality to be sure.  Working in an adult ICU is one thing, but a pediatric ICU is something altogether different.  These are people who have not reached a stage of life where they should be this seriously ill.  And most of the cases in the CVICU are not trauma or accident victims.  They are victims of their genes. They are victims of random statistics.  They are victims of early births or birth defects.  And so many are babies.  And so many are having their third, fourth…tenth surgeries.

We are now home and hopefully will not face time in the CVICU for a long time.  But, if you have a spare prayer or some positive thoughts, please send them to those who aren’t as lucky as we are and are still sitting in that room, in the uncomfortable chair, trying to be hopeful that they too will one day roll out of that wing to the “step down” unit, and then home.  #thankful

Goldfish in hospital

Six Word Saturday

Six Word Saturday: Tired, but Happy – Post Hospital Weekend

We are home!  I am amazed that we actually made it home in the least amount of time they estimated – four days.  It was not an easy four days and I did not sleep well or comfortably the entire time.  So, I am exhausted.  Bean is the same.  In fact, she is napping as I type this.  Hospitals are tiring.  There is no good rest to be had, there is no real comfort to be had…and the food isn’t very good.  So, I am extremely happy to have a weekend at home post-hospital.

Happy to be home, but exhausted.

The pacemaker placement went well.  All seems to be healing as it should be, but that doesn’t mean it doesn’t hurt or that she is ready to enjoy summer.  We did some shirt shopping this morning to give her looseness and comfort while the incision heals, but she got very tired quickly and the pain came back.  So, we only made it to a couple of stores and then we were back home, resting.  Which is fine.  A little bit at a time.  Here are some pics from her hospital stay and coming home:

 

Wordless Wednesday

(Almost) Wordless Wednesday

I haven’t done one of these in a while, but it has been a decent picture-taking week.  I really would like to take more pictures, but my phone battery is worthless and I often run out of power before pictures.  Which is sad, but definitely a First World problem.

It has been a week of guinea pig appreciation in our household.  We got the guins a while ago and my DD really loves them.  As you can see above, we have couch dinners for them, she reads to them, she lets them play on Animal Crossing on her 3DS, etc.  She also uses our dog as a pillow.  The middle bottom is her and her best friend from school on our way to the end-of-the-year park play day.  Tomorrow we have a sleepover with the same friend for the last day of school.

It has been a good week and we leave for beautiful (and much cooler) Monterey in two days!  Looking forward to relaxing before the stressful hospital stay.

Five Minute Friday

Five Minute Friday – Cheer

Friday, already?!?  Unbelievable!  Spring 2016 has officially come to a close (Class-wise.  Grading-wise, it has just begun to come to a close.) and I’m feeling both relieved and a little wistful.  So many things I would do differently (and can, next semester).  So many students I hope will keep in touch with me (I had some real gems this semester – I’m saying that with no sarcasm at all).  So many things I really enjoyed (and can’t wait to do again next semester).  So many unknowns moving forward!  And a sure-to-be-too-short summer “off” once I get my grades submitted!  I both love and hate this “in-between period”.  It is hard to stay motivated to keep grading quickly and efficiently when I know that I won’t have students asking me about them in class.  It is hard to not jump forward into planning without doing a proper and realistic appraisal of this past semester.  It is hard not to collapse into a pool of exhausted jelly and just watch the Hallmark Movies and Mysteries Channel for weeks on end.  But, I am attempting to keep things going…and that includes my semi-regular, weekly blogging attempts, of which Five Minute Friday is one of the more regular semi-regular posts!

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So, here goes….

Cheer relates to “joy” when I think about it.  Feeling “cheerful” means feeling content and happy.  It also relates to celebrations to me.  The whole “Cheers!” thing we say when toasting others.  And this week is definitely one of celebration!  I gave my last final of the Spring 2016 semester on Thursday and I am somewhat cheerful in looking forward to summer break.  My DD is going to be finishing up First Grade on Thursday and I’m definitely feeling cheerful about that.  At a number of points during her short life, I wasn’t sure we would celebrate milestones such as this.  Summer is always a reason to “cheer” for me.  It is one of my favorite things about being a teacher!  I get to spend long summer days with my DD enjoying summer fun.  I know how lucky I am to have that ability.

Cheer also makes me think of “cheering” for someone or something.  I love baseball and we’re getting back our minor league team after many years of absence.  I am excited to have someone local to “cheer” on and to be able to take my DD to baseball games during this summer of cheer!


That’s it.  Not very deep this week, but it is done.  Even if it was a day late (I went to bed before the actual Five Minutes began last night.  🙂