Health and Caregiving

Where does a child’s anxiety end and a mother’s anxiety begin?

I have never considered myself to be an anxious person.  I’ve always been able to get through things relatively unscathed emotionally.  My daughter’s illness changed all that.  My parents’ illnesses also changed all that.  Now, I feel like I have a certain level of anxiety most of the time.  But, that anxiety is nothing compared to what my relatively tiny 9-year-old holds in her heart on an almost daily basis.

Actually, that may be an overstatement.  Maybe it isn’t an almost daily basis.  Maybe it isn’t even that often but every occurrence seems like a huge ordeal for me.  Or maybe sometimes her being upset about going somewhere or doing something isn’t anxiety but just plain old moodiness or tiredness or too much sugarness.  I don’t really know anymore, but I feel like I should know.  I feel like everytime something happens that could be related to anxiety, I should be doing something about it, making sure that she does not become a statistic.  She has been through so much already.  She doesn’t need to be feeling like she is not on her own side in life.  But, she is 9 years old.  So, how do I talk to her about it without making it something else that gives her anxiety?!?  Please, someone tell me.  Because at this point, I’m a little lost.

My daughter has been exceptional.  She survived an infant heart transplant, severe sleep apnea as a baby which led to a tonsillectomy/adenoidectomy, then a bump during a heart biopsy leaves her with a severely leaking tricuspid valve that requires her chest to be drained of fluid that had backed up and then several bouts of pneumonia and then an attempted repair that failed and probably led to her needing a pacemaker for irregular heartbeat.  She has quarterly cardiac clinic appointments where she has to get poked for blood, examined with gel and a probing device on her chest and abdomen.  So, to my rational mind, after all of that, what could possibly be scary?  What could possibly make you feel threatened?  Well, it seems that it is a lot of things.  Places where she doesn’t know anyone.  Places where she does know someone but for some reason feels like she doesn’t belong.  Math.  Sports that take place on a team.  Someone being late to pick her up from school.  Any change in classes and teachers.  Staying overnight, even with family and friends, without us there.  Sleeping in her own bed up until about six months ago.  Going to bed without someone going with her, even now.

So, what do I do?  I want to “fix” it, but I know that isn’t possible.  I am not a mental health professional.  And anxiety never really gets “fixed” it just is something people learn to deal with in a healthy way.  But, I don’t want to put some other thing on her to be “dealt” with like her chronic condition of being a heart transplant recipient and having a leaky valve and having a pacemaker.  She has to deal with so, damned much.  I just don’t want her to deal with this.  And maybe in some small way (or a large way), I don’t want to have to deal with this.  It is yet another thing on the long list of things to be “concerned” about, to be “aware” of, to know how to properly “deal with” to be sure it is not something we make harder on her in the future.  It is a lot.  For her.  For me.  For us.

I don’t know the answer to the question in the title of this blog post.  I don’t know what is her anxiety and what is my anxiety about her anxiety.  I may never know the answer to the question.  The best I can do is my best.  That is the best I can do in any situation.

DON'T QUIT

Teacher Talk

Mind Blown: Mind/Cognitive Loads at Home and Work

You know those days when something becomes so clear to you that it is like when the eye doctor switches those lenses and everything that was previously blurry and dark becomes perfectly clear and strikingly bright?  Yeah, that just happened to me in a way that makes both my personal and professional life so much more clear and bright that I had to share. It seems especially poignant in my year of “making a home,” since it focuses on how much mental effort is really expended (mostly invisibly) in making a home.

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So, the first thing that popped up in my Facebook feed earlier today is this Real Simple article, shared by Working Moms Against Guilt.  The article focuses on the “invisible workload” that women carry in their brains:

Walzer found that women do more of the intellectual, mental, and emotional work of childcare and household maintenance. They do more of the learning and information processing (like researching pediatricians).

They do more worrying (like wondering if their child is hitting his developmental milestones). And they do more organizing and delegating (like deciding when the mattress needs to be flipped or what to cook for dinner).

Even when their male partners “helped out” by doing their fair share of chores and errands, it was the women who noticed what needed to be done.

The article struck a chord with me, not only because it quoted a poem written by a favorite blogger of mine from back when I first realized what having a chronically ill child was going to mean to my life, Ellen Seidman at Love That Max.  My daughter is not in any way comparable to Max in all that he (and therefore his family) has to deal with on the medical front, but she had a way of making me feel better about myself as a mother and she offered guidance for how to deal with all of the doctor’s appointments and anxiety and hospital stays and so much more.  But, back to the article…I recognized our own family, where my husband often asks me to “give him a list of two or three things to do” as if he can’t see the laundry piling up or the dishes sitting dirty in the sink or the garbage that needs taking out, etc., etc.  I make and record all the medical appointments.  I deal with most of the pharmacy issues for medication.  I schedule babysitters and dog sitters.  Now that our dryer isn’t working, I do loads of wash and then pile them in the car and take them to the laundromat to dry.  I then bring them home and fold them and put them away.  I keep our calendar.  In the day-to-day, it doesn’t seem like much, but as the article indicates, it takes its toll.  And as the author of the article includes, it isn’t just all the household management that we are having to think about:

It’s about housework, yes, but it extends to having to consider what neckline, hemline, height of heel, and lipstick shade is appropriate for that job interview, afternoon wedding, or somber funeral, instead of relying on an all-purpose suit; it’s about thinking carefully about how to ask for a raise in a way that sounds both assertive and nice; it’s about worrying whether it’s safe at night and how to get home; for some of us, it involves feeling compelled to learn feminist theory so as to understand our own lives and, then, to spend mental energy explaining to others that the revolution is unfinished.

I must admit that I’m not one for changing my neckline or hemline or heel height.  I am lucky to work in academia where I am not going to be the best-dressed faculty member, but I’m also never going to be the worst dressed faculty member.  But, as a female debate coach, I know what it is like to have to think about how to approach a conversation with others.  And yes, the revolution is unfinished, although now I figure I can just show this cover of Washington Post’s Express in response to anyone who challenges that notion:

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So, I can’t say I feel “good” about the article’s findings, but I do feel somewhat vindicated in feeling overwhelmed and exhausted much of the time and a bit frustrated some of the time.

But, it didn’t end there.  That was me noticing my own pain and suffering.  The real turning point came when I then read “Enhancing Learning through Zest, Grit and Sweat,” in Faculty Focus and I came to this last advice under the “sweat” section:

Mind cognitive load. Complex assignment instructions, confusing website navigation, and disorganized course materials increase unproductive cognitive load. Cognitive load should focus energy on the subject, not on the periphery.

And I thought about my prior classes.  I thought about how I have now realized how poor some of my navigation was designed on our Learning Management System.  I realized how at times, the course materials were disorganized and sometimes late being delivered.  I realized that, in the same way that I am suffering from a heavy mind cognitive load at home, I am placing my students in a situation where they are suffering a heavy mind cognitive load because of ME!  And I realize now how important it is to relieve that load.  I realize that, in the past, I have expected my students to “let things go” or I have told them to “remind me to post materials because I might forget” and that, my friends, is really not fair to them.

So, although I have already done quite a bit of reorganization and increased the clarity and focus in my classes and the assignment instructions, etc. I have a new understanding of the WHY.  I have a personal connection to my students’ frustration.  I am able to see like I have not been able to see before.

To conclude, thinking is hard work.  I am sure that I will continue to carry the load of thinking jobs at home.  But, I can now be more aware of when it is starting to wear on me and I can be more able to voice my concerns about it.  I will also work at ensuring I do what I can to allow my students to focus on their learning of the subject matter and not the peripheral “unproductive” cognition caused by my lack of preparation or awareness.  In the end, I hope that we will all have a year with less of a mind/cognitive load.

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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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.  🙂

 

Six Word Saturday

Six Word Saturday –

Joining up with Six Word Saturday this week.

Travel hopes are high.  No Whammies!

This weekend I am getting ready for a trip to Indiana with more students than I’ve ever taken before.  The logistics for the trip are like an LSAT problem and I’m dealing with some anxiety over the trip (as I always do, but with 20 people traveling, the stakes seem higher this time).  Last year at this same tournament, I had the worst trip I’ve ever had.  Two hotel issues (that were totally my doing), a problem with the advance (again, my doing)…I guess that was all but that was enough to scar me.  Luckily, I was only traveling with two students, so the problems were easy enough to deal with.  With 20, that would definitely not be the case.

So, I’ve been trying to double and triple check all the plans, but I still feel totally anxious.  I have not been sleeping great and I have a ton of grading and cleaning and such to do before I leave on Wednesday morning VERRRRRRY early (like 3 am early).

That’s the other part of this equation.  My husband is currently in FL for work.  He will get back around 11 p.m. on Tuesday night.  I will leave at 3 am on Wednesday morning.  We did this same thing last year (tournament schedules are usually very similar year-to-year), but last year was when all hell broke loose with my DD’s meds and we switched to pills and she wouldn’t take them for me and then I left and my DH got her to take the meds fine but when I got back she started having these horrible anxiety attacks about school.  It ended up being her med levels because of the switch from liquid to pills, but the whole experience with the traumatic days leading up to my departure with the pills, then the problems while I was traveling, then coming back to these horrible anxiety attacks…it is making me even more anxious about this year.  Sigh…

So, in a way.  This year HAS to be better.  Right?

Five Minute Friday

Five Minute Friday -Alive

I am joining the Five Minute Friday crew over at Kate Montaung’s blog Heading Home again this week.  I hope you’ll consider joining them as well.  It is a wonderful group of supportive writers sharing their perspective on a prompt each week.

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This week’s prompt is “Alive” – here goes:

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That is my daughter.  The picture is from July 3, 2009, four days before her transplant.  She had not opened her eyes or been awake for days, maybe weeks before that.  She had been on a paralytic in order to keep her from fighting the ventilator and all the other lines she had going into her little, tiny body.  She had just been moved from the PICU to the CVICU because the PICU doctor had basically given up on keeping her stable after days of changing medication levels, plunging blood pressures to elevated blood pressures, bad labs, etc.  The CVICU is typically reserved for those who have already had heart surgery, but they moved her there, I think believing that if she didn’t get a new heart within a few days, she would need to have a Berlin Heart.  Either way, she would be in the CVICU soon enough anyways.  She was probably as close to death as a baby can be without passing away.  It was terrifying and exhausting and depressing.  But, she held on.  Day after day.  Through what had to be painful and frightening situations.  I must admit that I sometimes wondered if we were doing the right thing.  Putting her through all that. But I had to believe that keeping her alive was better than the alternative.

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This photo was taken one month after her transplant.  The difference is pretty amazing.  In four weeks she was off the ventilator, smiling, had lost the puffiness that had been there for months before.  She was taking formula from a bottle.  She held fingers and loved to watch a mobile over her head.  She was ALIVE – not just at the basic level she had been before, but at the WHOLE level.  She was aware, awake and active.

I am now confident that we did the right thing putting her through everything.  She has thrived in the past seven years.  We have had our medical bumps and rough spots, but overall we’ve had it good.  We’ve had great times and we have wonderful memories and wonderful friends and being alive is good.  It is important to remind ourselves of that when things get rough.  Babies even know it. But sometimes life’s hard hits can make us forget that knowledge.  In this season of new life, remember that being alive is a gift.  A gift to us and a gift to others.

 

Simplicity Sunday

Nothing is Routine…Simplicity Sunday

I’ve spoken before about how much of a problem I have maintaining a routine.  I have come up with many, many rationalizations as to why I have an issue.  But, really, it comes down to self-discipline.  But, man do I pay the price for that lack of discipline.  Right now, for example, I can point to the intense amount of cleaning I had to do over the last two days, the misbehaving dog (who really, really needs to exercise), my exhaustion (due to not eating right and not exercising), a 7 yo DD who has no real routine in her life either and struggles with that a bit, food that has gone bad because I didn’t make it in time, forgotten tasks, etc.

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So, I once again want to get a routine together and implement it on a regular basis.  I feel like it would mean a lot to do it now and have it in place for a couple of weeks before we have to have my DD’s surgery.  Often, when we come home from the hospital, things are just completely out of whack for weeks.  But, if we have a routine set up and then can come back to it, I think it would help immensely.  Because, in our lives, nothing is routine.  But we are in desperate need of routine.

So, we’re going to try it again.  I have a lot to do everyday.  But, here are some things I want to happen everyday:

  • Walk the dog for 20-30 minutes (it would make a huge difference for the dog and probably a huge difference for me…I could listen to a podcast everyday during that time).
  • Unload/load the dishwasher
  • Do a load of laundry from start to put away
  • Feed and water the animals (dog, cat and guinea pigs)
  • Make meals – breakfast and dinner (sometimes lunch)
  • Do something active with my DD (not like sports active, but play a game, do a craft, etc.) for 30 min to an hour
  • Shower, do hair, makeup and such – I really should do this everyday, but I don’t.  I think I would feel much better about myself if I did all these on a regular basis.  I just kind of let myself go and then I end up feeling horrible because I look horrible and have not woken myself up fully, etc.
  • 10-15 min pickup everyday (although, I really want to work on all of us putting things away when we are done with them – it is now my mom mission for March).

Now, I don’t have to do all these myself.  And when I list it out, it doesn’t seem like much.  In addition to these, I want a list of chores to do throughout the week so they get done, but they don’t need to be done daily.  Things like vacuuming, changing the beds, cleaning the bathrooms, etc.

The routines are printed out (mine, my DD’s and a daily/weekly household one).  I’m going to post them and go to bed early to read (okay, really play Candy Crush, but I may run out of lives and end up reading for a bit) and be ready for tomorrow’s first task – walking the dog!  I’m going to lay out her leash and choker chain and my clothes and just DO IT!  I’m tired of lacking in doing what I know needs to be done.  Wish me luck!