Sunday, February 27, 2011

Busy Week

Okay, sorry for the delay in finishing my book reviews (See post below this one for reviews). Last week was insanely busy.  Jack has had a stye on his eye for a couple of weeks that wouldn't drain and was looking infected and, because I wasn't going to drive 1500 miles to St. Louis for an eye infection, I had to break down and make an appointment with a local ophthalmologist.  We hadn't seen this particular doc in years, but he was very nice and seemed genuinely interested in helping Jack.   He noted that there is some nerve damage in Jack's left eye and the need for surgery due to high pressures may be sooner rather than later and may end up happening here instead of St. Louis.  If Jack's eye isn't better in two weeks, the opthalmologist will put him under to lance the stye and then he'll do an EUA at the same time.  If the stye heals, then he scheduled an EUA for June. It's the first time any eye doctor in this City has scheduled an EUA on Jack.  They do them routinely in St. Louis. Time will tell where we are headed on this one.

The day of Jack's doctor's appointment, I went outside to discover this on our van:

This is the second time the windows in the van have been smashed by some punk teenagers walking around the neighborhood at night (I'm guessing).  The original hole was small - like a rock was thrown through the window.  This picture is after driving on the highway to the doctor's office - the glass caved in and barely avoided getting all over Jack and his nurse. We can't park the van in the garage because it has a raised roof.  I think it's time to get video cameras on the house with a big sign that says "You are under surveillance" to deter the punks!

Oh, and here is my do-it-yourself repair job to my car following the hit-and-run last month when we were in Flagstaff:

Nice, huh? I'm sure our neighbors like living next door to the Beverly Hillbillies!

Topped off the week by spending five hours in the emergency room with this kid:

She had been having pretty severe pain in her lower back for a couple of days and we thought she might have kidney stones again.  They didn't find any kidney stones, but they did find a stone in the tip of her appendix.  Because the appendix didn't look inflamed, they sent us home with instructions to return if the pain became worse or she started vomiting or running a fever.  From what I read online after I got home, it's possible that the stone could eventually lead to an appendicitis.  So, I guess we'll be on the alert for any signs of appendicitis.

While not a week filled with earth-shattering events, it still was a busy one.  I missed a lot of work, which means I have a lot of work to make up because deadlines don't go away just because I'm not there to get the work done.  Looks like I'll be working weekends for awhile!

Hoping this next week is a quiet and productive one!

Peace my friends.

More Book Reviews

More book reviews as promised.

I just finished reading this book:

The Essence of Happiness by His Holiness the Dalai Lama and Howard C. Cutler, M.D.

 A short, simple, easy to read “reflections on overcoming suffering and obstacles to create a life of happiness”.  It's one of those books you can pick up and read over and over again when you need to re-focus and reflect on finding your “happy place” in life.

My absolute favorite reflection found in the book:

If you want others to be happy, practice compassion; and if you want yourself to be happy, practice compassion.


Along similar lines as “The Essence of Happiness” - but with more content are two of my favorite books written by Rachel Naomi Remen, M.D.:

My Grandfather’s Blessings – Stories of Strength, Refuge and Belonging

Kitchen Table Wisdom – Stories That Heal

Dr. Remen, “whose unique perspective on healing comes from her background as a physician, a professor of medicine, a therapist and a long-term survivor of chronic illness” shares a collection of true stories in both of these books.  The stories are short, easy to read and offer many uplifting, insightful and worthwhile messages.  What drew me to this author was reading in her bio that she has trained many thousands of physicians to practice medicine from the heart and her groundbreaking curriculum “The Healer’s Art” is taught in nearly half of American’s medical schools.   Dr. Remen was a pediatrician (at Stanford University) who gave up pediatrics to counsel people suffering from terminal and chronic conditions. 

I’ve read both of Dr. Remen’s books over and over again because the stories are short and enjoyable and I learn (or am reminded) of something new each time I read them.


How Doctors Think by Jerome Groopman, M.D.

This book was recommended to me by one of Jack’s doctors who made the book required reading for the interns and residents rotating through the PICU.  I loved this book and think it is a must read for anyone who deals with the medical profession on a regular basis.

From the inside cover of the book:

On average, a physician will interrupt a patient describing her symptoms within eighteen seconds. In that short time, many doctors decide the likely diagnosis and best treatment.  Often decisions made this way are correct, but at crucial moments they can also be wrong – with catastrophic consequences.  In this myth-shattering book, Jerome Groopman pinpoints the forces and thought processes behind the decisions doctors make.  Groopman explores why doctors err and shows when and how they can – with our help – avoid snap judgments, embrace uncertainty, communicate effectively and deploy other skills that can profoundly impact our health.  This book is the first to describe in detail the warning signs of erroneous medical thinking and reveal how new technologies may actually hinder accurate diagnoses.  How Doctors Think offers direct, intelligent questions patients can ask their doctors to help them get back on track.

It’s been several years since I’ve read this book and I could definitely stand to read it again.   I highlighted things in the book that stood out to me or that I wanted to remember.  A few of the things I highlighted:

Does acknowledging uncertainty undermine a patient’s sense of hope and confidence in his physician and the proposed therapy?  Paradoxically, taking uncertainty into account can enhance a physician’s therapeutic effectiveness, because it demonstrates his honesty, his willingness to be more engaged with his patients, his commitment to the reality of the situation rather than resorting to evasion, half-truth and even lies.  
(I couldn’t agree more!)

There is nothing in biology or medicine that is so complicated that, if explained in clear and simple language, cannot be understood by any layperson.

Laymen should understand the inherent limits and potential biases in the beholder’s eye, so that when there are important decisions to make, they can ask for another set of expert eyes.
(On why getting a second opinion is a good thing.)

This last one that I highlighted makes me laugh now.  I got the book shortly after Jack had his spinal fusion surgery in 2006.  Jack’s spine surgeon was an arrogant ass, to put it bluntly (but a good surgeon nevertheless).  I absolutely drove him up a wall with all my questions (which I know because of comments he made to other people that got back to me).  In any event, it didn’t surprise me that of the physicians interviewed for this book, the spine surgeons refused to reveal their identity:

The spine surgeons I spoke with were reluctant to be identified by name out of concern that candid answers would damage their standing in the medical community and reduce patient referrals.


Finally, for the perfectionists like myself out there (and I can think of a few) - 

The Pursuit of Perfect – How to Stop Chasing Perfection and Start Living a Richer, Happier Life by Tal Ben-Shahar, Ph.D.

For the true perfectionists out there, this book really hits home as the author talks about the behavior of the perfectionist.   The author discusses the difference between the Perfectionist and the Optimalist. 

The Perfectionist views life’s journey as a straight line.  The Optimalist sees it as an irregular spiral.

The Perfectionist is afraid of failure.  The Optimalist uses failure as feedback. 

The Perfectionist is rigid, critical and defensive.  The Optimalist is adaptable, forgiving and open to suggestions.

The Perfectionist focuses on the “destination”, setting goals that are overly ambitious or unobtainable. The Optimalist focuses on the journey and the destination. 

According to the author, by rejecting the all-or-nothing thinking of the Perfectionist and embracing the more nuanced, complex mind-set of the Optimalist, we can learn to accept our failures along with our successes and lead much happier lives.

The book has a lot of good exercises.  One that I found to be particularly useful – and one that I try to use when I get irritated with myself because I did or said something stupid or less than "perfect" - is the PRP Process. The PRP Process involves giving yourself permission to be human,  reconstructing the situation and gaining a wider perspective. When applying the PRP Process to a particular event:

1.                  Give yourself permission to be human: acknowledge what happened as well as the emotion that you are feeling as a result.
2.                  Reconstruct the situation.  Ask yourself what positive outcomes the situation can have.  This does not mean you are happy about it, but simply that there are benefits that can be derived from it. Can you lean something new? Can you gain a new insight in yourself or others? Can you become more empathetic or more appreciative of what you have in life?
3.                  Finally, take a step back and gain a wider perspective on the situation.  Can you see the situation in the larger scheme of things?  How will you see the situation a year form now? Are you sweating the small stuff?

The PRP Process really does help by putting things into perspective.

This book is a very good read for the perfectionist personality.


That concludes my reviews for the books I've read recently, as well as my favorite books to date.  As you can see, I'm not really into reading novels or fiction.  Although, I do like a good Nora Roberts book on occasion. I mostly read to learn and to try and improve myself, not so much to escape.  Maybe that's my problem.  I should read to escape more, eh?

Tuesday, February 22, 2011


Sorry, I didn't have time to write my next book review, as we had visitors tonight.   

Holly - one of Jack's former St. Louis nurses - and her family are in town for the week and they stopped by for a visit.  Holly was Jack's primary nurse for the first year and a half of his life.  She was an awesome nurse and taught me so much in those early days.  These days, Holly keeps busy with her very busy household of boys!  We love Holly and her family and appreciate that they always take the time to stop by when they come to Phoenix.  

Thanks for staying with me on my previous book reviews.  You guys are the best!

Book Reviews

Book Reviews (simply my opinion).

This book is written by a mother who recounts life raising her son who has cerebral palsy and requires 24/7 care.  Her son is now 22 years old and he spends the majority of his time in bed because it is where he is most pain-free.  When I bought the book, I thought it would be more about how the author’s son finds happiness and value in his life despite being bedridden. While the author does touch on her son’s present life, she talks mainly about her son’s life growing up – his schooling, social interactions, his many hospitalizations and surgeries and the challenges faced to get him the services and care he deserves.  The author and her family currently live in the UK, but have also lived in Canada – so her perspective of the services her son received and services she believes he should receive as an adult are looked at from a national healthcare system perspective – which I don't have experience with.

Several points in the book that I flagged as noteworthy:

Something called the “Capability Approach” which focuses on the kind of life that people manage to lead and whether that life has value to the individual, from their perspective, not ours.  For example, some people (including myself) may ask how can Jack be happy when all he does is lay in bed all day. But, from his perspective, he is loved, pain-free, well cared for and entertained every day and that is all he needs to be happy and have a life of value. (Of course, I’m just surmising this, as Jack has never actually told me how he feels – I can only base it on what I observe.)

When talking about mothers of children with severe disabilities, the author states:

“It is a paradox that in order to be free, the mother of a child with severe disabilities has to relinquish the choosing self.  I can remember thinking more than once, Okay, I give up.  I give up on imagining that I have a life.” … “It is ironic and paradoxical that the key to surviving the experience of caring for someone as dependent as my son means giving up on freedom of choice. The capabilities of my family cannot be measured on the same scale as others – it‘s part of our job as people who love someone who is very dependent to redefine happiness and achievement.”

“Mothering a child with medical needs is a very public but lonely endeavor.  Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighborhood mother-toddler groups for young children with severe disabilities.”

What I found most interesting was the author’s belief that she has a moral right to the freedom to grow old without being her son’s caregiver 24/7.  “A retirement of sorts, a hope of not changing my son’s diapers when he is forty-five and I am past eighty is a moral ‘right' in my view.”  In this regard, she believes that the community, the government and the families have to come together to find a way to care for people with disabilities (as well as the elderly).

I’m not sure I agree that we are "entitled" to be released from the burdens of caring for our children. Perhaps when our “children” are forty-five and we are eighty, it may be necessary, but I'm not sure it's our right.  I can't even imagine having to put Jack’s care totally in the hands of someone else. I suppose when he’s twenty, I will think differently, but right now, I can’t even “go there”.

Okay, so this book review is way longer than I intended. You still with me?

In summary, I will say that the book was an interesting read, but it had more of a political slant to it rather than being a human interest story.  I prefer the latter.  The book definitely gave you pause and food for thought, so it was worth the read.

This book was written by a Rabbi whose son was diagnosed with a degenerative disease when he was three years old.  His son died when he was in his teens.  The book primarily focuses on God and prayer and the relationship between the two.  Interestingly, the author believes as I do, that God doesn’t answer specific prayer requests.  (See, “The Tough Question” under Blog Thoughts on my sidebar).  The author discusses how prayer does serve a purpose, but not in the way that many people believe it does.  I’m in agreement with the Rabbi for the most part in this book, except for his belief that God doesn’t answer our prayers because some things are too big for even God to handle.  I think God can handle whatever he chooses to handle, but he’s decided some things are best left for us to handle without his intervention -but with his support and guidance.

An excerpt that is good food for thought:

“Everyone is our brother or sister in suffering. No one comes to us from a home which has never known sorrow.  They come to help us because they too know what it feels like to be hurt by life. 

I don’t think we should confront one another with our troubles.  (You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place. The afflicted person is not looking for an invitation to join the Suffering Olympics. But it would help if we remembered this: Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed widely. Everyone gets his share.  If we knew the facts, we would very rarely find someone whose life was to be envied.”

I’m not sure the book ever really answered the question “WHY" bad things happen to good people.  I wasn’t overly impressed with the book, but it was an easy read and if I took away one positive point from the book (which I think I did), it was worth the read.


It’s late, so I’ll have to give you my review of “The Essence of Happiness” tomorrow. I’ll also share a list of books that I’ve read over the years that I really like.  No more long book reviews though, I promise!

Seriously, are you still with me?!

Sunday, February 20, 2011

Final Resting Place

A few weeks ago, my sister called to tell me my mom's headstone came in and was placed at her gravesite. I've only been out to the cemetery once since my mom died and it wasn't too difficult because her grave wasn't marked, so who knew if I was even looking at right spot in the ground.  Today was a little harder because it was all right there in black in white ...

It sort of takes your breath away.  My dad jokes and says that we are good to go now, all we have to do is throw him in there with my mom.  Let's just hope it's not anytime in the near future! Did I mention that my sisters and I are going to Ireland this summer with my dad? We are taking a couple of our kids with us and we'll be there for about ten days.  After my sisters and I head home, the grandkids and their grandfather will spend an extra week traveling Ireland together.  Should be a memorable summer for all of us.

I am working on a book review post for the three books I've read over the last two weeks. I had hoped to have it finished for tonight's post, but I went to my sister's tonight for dinner and after a few sangrias, my brain isn't in any condition to compose a meaningful post. But tomorrow .... I promise!

The three books I've read are:

-The Four Walls of my Freedom by Donna Thomson
-When Bad Things Happen to Good People by Harold S. Kushner
- The Essence of Happiness by the Dalai Lama and Howard C. Cutler, M.D.

Stay tuned and thanks for checking in!

Monday, February 14, 2011

I Feel Like I Need to Post Something

I returned today from spending a few days in Ohio with my friend Anne.  It was so nice to sleep in a comfortable bed with peace and quiet all around.  No baby monitor, no swooshing of the vent, no suction machine, no demands.  Something all of us moms need every once in awhile.  I didn't take my computer and I didn't take my camera. So, I've got nothing to share.

Everyone survived in my absence (not that I was worried).

It's back to reality tomorrow tonight the second I walk in the door.

Unfortunately, I've got nothing new, nothing exciting and not even any pictures to share.

But, I really do appreciate all of you who check in on us.

We are all well.

Except for Mary.  She has an eye infection (in addition to the flu that won't seem to go away), so Mark took her to the pediatrician today.  The last time our pediatrician saw her was in 1995*.

Okay, so, I don't do well-checks.  Is that so wrong?

(*she's been to the doctor since 1995, just hasn't seen our primary pediatrician since before we moved to St. Louis).

I've been doing a lot of reading lately.  I'll have to share some of the books I've read and give you my take on them.  Some good stuff! (Thanks Caty!)

More later ... thanks for checking in.

Sunday, February 06, 2011

Checking In

It's been a while.  Not much going on ....

Except ...

The flu is back. Underneath that blanket is a sick Eric.  It's been a cyclic flu season.  Seems Eric gets better for a week or so and then he gets sick again.  Eric is not happy that his sick times have coincided with Christmas break and weekends.  So far, he's not missed much school.  

Woody has a broken leg and ....

 . . . so does Jack! 
(casted Woody courtesy of Jack's nurse, Kristi)

As I've mentioned in the past, Jack's bones are very fragile and it doesn't take much to cause a break.  We took Jack directly to his orthopedic doc instead of going through the ER and, initially, I wasn't happy when he didn't cast him.  He was just going to send us home without anything until I mentioned that Jack needed some support when he is transferred from his bed to chair.  He gave us an ill-fitting splint, but it seems to be doing the job.  I emailed Jack's neurologist and asked her if it was common to not cast breaks for non-weight bearing kids.  She reassured me that fractures are common in kids like Jack and that it's typical to only splint - not cast.  Jack is on the mend and isn't in any pain (provided we are very careful with his leg).  Unfortunately, breaks are a big concern with Jack and, no doubt, there will be more in the future.  

We closed out this weekend watching a great Super Bowl game. I'm not necessarily a fan of the Packers, but I'm definitely not a fan of the Steelers, so I was happy with the outcome. :)  

a birds-eye view of everyone watching the game

(my dad had his hand on Jack the entire time he was sitting next to him -- very sweet)

I'm heading to Columbus, Ohio next weekend to visit my friend Anne.  I'm not so sure about the timing, Columbus in February = snow.  Hopefully there won't be any weather delays.  

That's the update from here. Thanks for checking in!


This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.
(George Bernard Shaw)