I don’t know why, but for a couple of weeks now, I’ve been focusing too much on the things that make my life difficult rather than on the things that are just absolutely perfect, which is really most of my life. I’ve been focusing on “lack.”  Of money, of time, of emotional capacity, of muscle tone…

Then the Universe brought my friend Lori Ware to town.  Lori has a lot of difficulties that she could focus on. Well, actually, there’s one difficulty that she could use endlessly to remind people of how hard her life is.  Her son, Seph, who is 8 years old, has Duchenne Muscular Dystrophy. And, to be quite blunt, if scientists don’t find a cure soon, Seph will one day be in a wheelchair and, much too soon, he will die.

I hate writing that sentence. It makes me sick to my stomach.  And it is Lori’s everyday reality.

The Ware family — Lori, Seph, sisters Mallori and Hannah (dad Joe couldn’t make it) — were in town for a PPMD conference. Parent Project Muscular Dystrophy advocates for kids like Seph. It was founded by an extraordinary woman named Pat Furlong, who lost BOTH of her sons to Duchenne.  Can you even imagine?  I know a lot more about Pat’s story, too, and maybe I will share that with you, as well, sometime soon.

But back to Lori.  I met her downtown, Mae in tow, to attend some of the conference sessions with her but, really, just to be with her.  She is a force of nature… with a cute southern accent.  Lori introduced me to other parents facing exactly what she is facing with Seph. Every time I looked one of them in the eyes, I wanted to hug them. I wanted to ask them about the moment – that one, awful, life-changing moment – when they learned their son (or in some cases, sons) had Duchenne and that he could die of the disease. (Lori’s doctor told her, “Take Seph home and love him; he’ll be dead by the time he’s 18.” She found another doctor.)

I thought about that moment. No parent should ever, ever have to face a moment like that. I had one awful moment with Mae when I was forced to my knees and I feared for her life.  My awful moment was brief. Theirs will never end.

And so, I followed Lori around like one of the service dogs that many of the boys had. I lapped up her energy, I wagged my tail at her smiles. I met boys and moms and dads who talked about the same things I find myself talking about: the next meal, naps, grade point averages. But they also talk about clinical studies, heart attacks at the age of 8, and whether their boys will ever have the chance to fall in love.

By the end of the day, Mae and I were both whooped, but I was rejuvenated. I was on an energy spree. Not because I was able to recognize how good my own life is (that, too) but because Lori focuses on blessings, not on “lack.” She sees blessings in her life – Seph is still walking. His doctors are amazed at his strength and flexibility. And she was VERY focused on driving to the top of Mt. Evans the next day because it’s one of her favorite places on the planet.

There is no “lack” in Lori’s life. Nor in mine.

My dear Lori, yet again, I learn from you and I “gain” from you. Thank you… Give Seph a big ‘ol smooch for me!

OK, so I’m not sure if I should let you know this, but I’m actually sitting here pumping as I write this. In fact, for the last three months or more, I have done a good deal of my correspondence with my boobs attached to a sucker.

Mae gave up nursing in the second or third week of life during her first visit to Childrens Hospital. I met with lactation specialists who kept trying to convince me that I “could make it work” but somehow Mae wasn’t receptive to their messages. I can’t blame her; she had other things on her mind, such as living through heart surgery.

Anyway, I must confess that it is no small source of pride that I was able to keep my milk supply up during Mae’s whole ordeal. Now, life has returned to normal (it really has!) and I’m still pumping. I pump and I pump and I pump.  And I hate it.  There is no bonding. There is no sweet moment of peace between mother and daughter. There is a noisy pump with tubing and plastic and a rhythmic suck, suck, suck.

It sucks.

Other moms have told me their stories of heroics — pumping 8 months, pumping 13 months — and their kids didn’t even have heart surgery. So, here I am with Mae four-and-a-half months old, a cardiac surgery survivor, and I’m getting ready to give it up. I’ve had twinges of guilt but, truly, not too bad. (And before anyone comments on how I “should” keep it up for Mae’s sake, please spare me. I’ve heard it ALL and I’m quite certain Mae is going to be FINE!)

My hair is falling out; my joints all hurt; my left boobicle produces four times as much milk as my right boobicle and, thus, it is four times bigger, requiring lots of loose shirts and crazy bra antics; I ache all over. This happened when I nursed Delaney and Allie, too. Nursing is hard!  Much harder for me than pregnancy.

And I actually resent lactation specialists and nursing-maniac-mommies who act like my needs should come SO FAR beneath my daughter’s. I have been pumping every three hours every day of the week for about 16 weeks! This isn’t up for a societal-expectation discussion. This is MY decision and Mae is going to turn out just fine.

Sooooooo, I think it’s time to wean. Yes, this is definitely the last time I will “nurse” a baby. I’m ok with that. I’m reveling in every single nanosecond of Mae’s sweet life because she was a surprise and I am LOVING this surprise. But it is time for this phase to pass.

Ahhhhhhh, the freedom!

(Ok, so let me turn this sucker off…)

So, I have this thing on my face.  No, it’s not my nose, and I’m not playing ‘name that body part’ with a 2-year-old.  (even though that is kind of fun)

This ‘thing’ appeared about 6 weeks ago out of nowhere.  So, good hypochondriac that I am, I went to the dermatologist.  She, all 26 years of her, with her naturally tan and superior skin told me brusquely and non-politely that this thing on my face is a pre-cancer.  Excuse me…A WHAT?  Anything associated with the ‘C’-word can’t be good.

After I slowly left the office in a complete emotional fog, I raced to the Internet and did some research.  These ‘actinic keratoses’ or pre-cancers are quite common, are easily treated (by a cream that burns my face like medieval hot oil), and are supposedly not that big of a deal. 

But it SO is a big deal. 

I’m fair-skinned, granted, and I got my dose of sunburns as a kid.  But, my parents slathered newly-invented sunscreen on me and squeezed hats onto my big head (which I promptly removed).  I’ve been wearing sunscreen, especially on my face, RELIGIOUSLY since I found my first wrinkle in my mid-20′s  (unfortunately that didn’t prevent more wrinkles in its wake).  My dad had some pre-cancers too but he was in his late 50′s.  I’m perching precariously close to 40, but not 60!   As my kids would say, especially in the teen-aged years: “It’s just not fair”

Now I am over-diagnosing everything on my body. 

“Has that mole changed?” 

 ”Is that REALLY a freckle?” 

“Is that a scab or a tumor?” (pronounced ‘Tu-MAH’ a la Schwarzanegger) 

I also have become completely overzealous with the nagging at and hovering over my daughters (more fair-skinned than I, if that’s even possible). 

“Put on a HAT before you get this awful-looking thing on your face like your Momma!!!”

I hate facing the inevitable, that awful rumor that I won’t be here forever.  I really despise how this small spot on my face has grown to represent the fear that I’ll leave my children and my life without accomplishing anything positive.  Well, unless you consider producing frequent eardrum-busting rants during my stint as a parent as ‘positive’.  

Some gloomy thoughts.