My Mom, Marfan Syndrome, and a good book series


I stayed up until nearly 2 a.m. this morning, after arriving back home at midnight, after being with my mom in the hospital for more than five hours.  It’s a long story, and one she’d probably not appreciate me sharing here, but she’s had a very rough year, mostly with complications/symptoms from Marfan Sydrome, in which the fibrillin — a protein that is rather like a glue that holds one’s body together — produced by her body is faulty.

I have been so overwhelmed by friends and family offering love and support.  I mean, I’m not really the one who needs the support — my mom does.  But, it is… precious to me, to think of all those I know who love and care for both my mom and the rest of my family.  It’s encouraging.

I guess I can write about this now, because she successfully came through surgery, not yet two hours ago.  That is a huge relief.

I’ll be going to the hospital soon.  My dear hubby and I are playing tag team, of sorts.  I really wanted to be the one to go when he decided to leave work early– I want to BE THERE.  But, another part of me loves him all the more for loving my mom and wanting to be there for her.

Yesterday evening, my mom’s nurse in the ER was a lovely young woman.  We talked about all sorts of stuff, and I would bet money she was a Christian, though I didn’t ask.  It turns out that her dear friend was just diagnosed with Marfan’s, so she was full of questions — kind and tactful ones, but questions nonetheless.  I thought it rather providential to have a nurse familiar with Marfan Syndrome to be the nurse for my mother.

A while back, I read a review in World Magazine (to which you should subscribe, dear reader) of a book called The Red Door by Charles Todd.  I was very interested, as I really love detective fiction, but it’s difficult to find a book that is challenging, well-written, but not filled with cr@p that leaves me slimed.*  I was even more pleased when I found out that the book is part of a series.  I decided to start from the beginning, rather than the well-reviewed The Red Door.  However, I didn’t do my research well, and ended up starting with book #2, instead of book #1.  I must admit, I was underwhelmed.  But… I went ahead and read the first book in the series, A Test of Wills, and it was fabulous, simply really good.  I decided that the 2nd book in the series, for which I didn’t really care, was an anomaly, and decided to keep going.

However, it’s a wait, because my local library doesn’t have a good supply of Todd’s books, especially the earlier books in the 13-book series, so I have to place titles on hold, and pick up a copy when the other readers have finished.  This week, I finished the fourth book, Legacy of the Dead, and I think it’s my favorite yet.  I have eagerly waited for the fifth book, which I picked up from the library yesterday.

However… when my mother was unexpectedly sent to the ER by her doctor, and I left to see her, I grabbed my book.  To give to her.  Yet unread by me.  I know that oftentimes, hospital stays can be boring, and I know she loves a good murder mystery herself, and has the same problem I do in finding good authors.

So, I left her with the company of both my Stepdad and a (hopefully) good book.  🙂

I couldn’t sleep, though, at home.  I rustled about.  I posted on Facebook.  I read, coincidentally, the most recent issue of World Magazine, which had arrived in yesterday’s mail.  I thought.  I cried.  I prayed.

It takes me so long, really, to transition, that I should extend much, much more mercy to my dear children, who have the same propensity.

I finally felt like I could go to sleep.

So I did.

Today, I find myself active.  Not with energy, so much as restlessness.  I tend to do things when I’m upset, rather than sit and eat ice cream, though that sounds good, too.  So, boys’ room carpet is now shampooed, my bathroom (mostly) cleaned, dinner in the Crockpot…

Still restless.


* Plus, my favorite of all time in the genre is Dorothy L. Sayers, and frankly, she’s hard to beat.  I’m endlessly disappointed when books don’t measure up to her standards, and I need to stop that, because no one is ever going to measure up.  They just aren’t.  Or, maybe it’s just that I like post-WWI English detectives, as both Sayers’ and Todd’s protagonists are.


About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on July 23, 2010, in Family, Medical Stuff, Sad Things, The Dear Hubby. Bookmark the permalink. 6 Comments.

  1. My Sweet Karen,

    I hope you are able to find peace and comfort in the course of the day. I will be thinking about you and praying for you. Thanks for the tip on the book – I am always looking for good reads and hate getting half way into a book and realizing it is getting gross and I wasted my time. I will go and hunt it down at my library! 🙂

    Have a little ice cream love!

  2. How’s she doing? and is this vein surgery at all related to her breathing problems? or is that something different?

    • She came through surgery well, for which I am immensely relieved. I still have some concerns… but she’s out of the woods.

      And, yes, both her breathing problems and the vein problems are both from Marfan Syndrome. (Will tell you more detail IRL.)

  3. If your mother isan’t already familiar with it, check out the National Marfan Foundation at, or at We provide information and resources for infividuals and families affected by Marfan syndrome and related disorders.

  4. Sounds like books I would like!

    It’s funny the different ways people deal with stress or restlessness. I too am a “doer”. Last whirlwind I beat the living room rug out and then, feeling tired but not yet restful, I put my hands to work and drew and painted a large paper doll of strawberry shortcake.

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