Wednesday, September 24, 2014


This is me. The face of the overscheduled housewife. The mom of a gaggle of kids and the wife of a skilled and highly regarded surgeon. I have the brown eyes of my dad and my son, Mike. The smile of my mom. And her sadly slowly disappearing eyebrows. My hair is, thanks to my incredible colorist and a chunk of money and time every six to eight weeks, remarkably the same as a blend of my kids'. It's wavy in the back from the crown down and I have to straighten it or it kinks right up. My ears are pierced and have been since I was in fifth grade and got them pierced at Two Plus Two in Hawthorne Mall. I have some make up on. This is what you see when you meet me on the street or at school or the rink or the store. This smile, this face.

What you don't see here is my fever of 99.2, my swollen jaw that prevents me from having a descent dinner, a swollen knee that keeps me off the floor with the little kids and from moving more than a snails pace around the house. You don't see the upset stomach I've had off and on for literally years that has stumped all the GI doctors and annoyed me to no end. Or the costalchondritis that causes swelling of the connective tissue between my rib cages making it painful to breathe, lay down, wear a bra, twist my torso, bed over or even sleep (because I can't lay down without being in pain).You don't see the lumpy bumpy scarred abdomen from four major surgeries. What you aren't seeing is that I have lupus. 

I was diagnosed with lupus, formally Systemic Lupus Erythematosis, on October 13, 1983. I was eleven years old, it was Columbus Day, cold fall weather, and I felt horrible. Like I had the worst flu ever. I didn't want to eat or do anything, just sleep. I couldn't roll over if I laid down-- my joints were so swollen and painful. My fingers didn't-- couldn't make a fist. My knees didn't bend to allow me to sit criss-cross. My mouth barely opened and, odd of them all, my tongue and lips would swell. No rash, no noticeable fevers. But I left that appointment where I saw a lot of doctors in the room at once (hindsight: they were residents) with a single prescription for prednisone. A day later, I swear it was that quick, I was better. But that was a tease because the year before had been a slow decline and the thirty years ahead would be nothing short of a really rough ride. 

That's my dad and me in my hospital room about a week after that initial diagnosis, if I remember right. We are next to a big get well card that the whole sixth grade class had made for me. 

So I have lupus. I'm still alive, right? Yea... But (and you saw the caveat coming didn't you?)... some "life." Living with lupus is interesting. Some people have really very tough battles with kidney failure, nervous system involvement, pericarditis, aseptic necrosis of joints from the steroids (which, by the way, can happen from so little as a few DAYS of use. I've been taking them basically for 30 YEARS.), osteoporosis at a very young age (in your 30's). Some people get away with pretty much no symptoms aside from the occasional joint pain. Others struggle until their immune system finally does in every organ needed and they die. Yes, people with lupus die, and myself and my friends with lupus live every day with that fear that the one day of feeling like crap is going to lead to that final downward spiral to their grave. It's a looming sense of "the end is near" and it puts the saying "carpe diem" into a bit more perspective. 

Lupus in Latin means wolf and the disease is called lupus after the rash that many people (not me, thank you God) get which looks like the bite of a wolf. The wolf has become a symbol of sorts to many people with lupus. For starters, they are strong, and lord knows to get through the day (get through MY day?!) takes strength. The rely on each other-- no way can I do this alone. I have my pack of friends and fellow "lupies" who I lean on. My village who comes to my rescue. Wolves are nocturnal.... now this is a bit of a sore subject with me because I love to be outside. I love the beach, the sun and the fresh air, but I am sensitive to the sun and it's only gotten worse over the years. When I am in the sun without protection of SPF 1,000,000, a hat, long sleeves, etc, I wake the next morning feeling like I've been hit by a truck. I am like a wolf in that the only time I can go out is when the sun is low in the sky or the moon is out. I have a friend who has recently been battling a horrid flare of her lupus and she uses the hashtag #strongerthanawolf a lot in her social media. Right now, I feel like if I were a wolf, the pack would leave me behind because I'm the one limping along. (You can read more of her blog at and you can follow her on Facebook, too. I'm not that fancy... yet!) 

I am patiently dealing with my lupus on a day by day basis. It comes into play not in literally everything I do each day but much of what I do and has come to be an unconscious routine. Apply the sunscreen. Take my meds. Take my vitamins. Get to bed at a reasonable hour. Delegate and plan and be organized so I don't get stressed out because the stress with flare up the lupus. I take each day as it comes (for the most part) because at a moment's notice, all hell could break out and my energy level drain completely, or my jaw swell, or my thumbs swell, or the whole thing spiral out of control. I know I have a serious illness. Of course it scares the shit out of me. But I'll be damned if I'm going to not enjoy the time I have here. 

Saturday, August 23, 2014

Emily Post is Rolling in Her Grave, Vol 1

The usual disclaimer: Sorry if I piss someone off, it's not intentional and I'm really not speaking of anyone in particular (unless I'm referring to a particular incident in which case you will know exactly that I'm talking about you). There are exceptions to everything and I'm sure someone my age out there is perfect. God bless you and your perfection. Please, please, let me know how you do it. Til then... don't take it personally.

I am the only child of parents born in the early 40's: Dads carried hankies, moms wore stockings and manners were grilled into my generation like grease down the neck of a foi gras goose. We said please and thank you, wrote thank you notes, replied promptly to invitations, called any adult Mr or Mrs, and did what those adults asked without (too much) whining. We showed respect for our peers and our elders.

First up in my series of observations about our lack of Etiquette: Screen Addiction. (Or is it social media addiction?) 

When it came to screens, there was one: a TV. It was a giant box, often a stand-alone piece of furniture and the youngest person in the room was the remote, getting up to change the volume or channel as needed. sometimes we even had a black and white tv from the "old days" when mom and dad were first married. We had 5 TV channels and lived for Saturday mornings when we could flip between 3 of those channels and watch cartoons for three or sometimes even four whole hours at once.

We didn't dream of not talking to our friends' parents when we were at their home, and if you sat quietly, not looking at anyone in the eye at the dinner table, you were one of a few things: in trouble, sick, or sad. The internet was far from invented, handheld anything was a Walkman with cassette tapes and why on earth would you bring it to the table? You'd get shot! Yet someplace in between Carol Brady sighing "oh Marcia" and Ross and Rachel having a baby, it appears that a ton of these kids that go by the label Generation X (and I'm a Gen X-er) completely forgot those manners. Worse yet, they forgot to teach them to their kids.


 I love this photo because it describes so much of what I see lately. Dear God people, put down the phone and interact! I am probably pretty guilty of being on FB a bit more than I need to, falling asleep to surfing through Pinterest, or binge posting meme's, but there are few things worse than seeing a table with a family in a restaurant where they are all on their phones, completely silent. Not a word, someone has on headphones, the only time they talk is to the waitress. We have a rule in our family that there are no screens at the table. The kids have a bag of coloring books and the tools to color with rotate from colored pencils to crayons to markers. The coloring books rotate too-- I keep 2 magazine holders on the laundry room counter with a wide variety of activity books and plain paper in them for them to pick. The bag is a cute one from the dollar bin at Target. When it breaks like the first one did, we just pick up a new one. They are so used to this that they look at the kids with screens like something's odd with THEM. I have even had my kids ask me whey the other kids don't want to talk to their parents. I say I don't know and then go back to coloring Spiderman and chatting about hockey practice or who had the better game of four square at recess.

It does seem easy to entertain your kids at a restaurant with video games or other screen-intense thing so you can have a moment to talk with your spouse (or not). And I've done it twice I can think of-- once when, recently, my son kept interrupting me during an important conversation at breakfast where I had no other choice and had already searched the 400 page Chuck the Truck book for a maze that was easy enough for him to do yet hard enough to take him the whole conversation. The other was when we were out with friends and the other boy there was being mean to my son-- I did it because we weren't ready to go yet and he had basically crawled into my lap on the verge of tears. Both times, when we left, the kids said to me "That was just a special treat, right?" They know. Typically they don't ask for screens at the table. Or in the car (we don't have a DVD player in the car). They DO have iPods. iPod, not iPad. They hold a few TV shows, a few apps, and music and are kept aside for when we travel in the car for over an hour. Otherwise, outside of the house, it's all old school, all the time.

Perhaps my biggest complaint with screens at the table is that the kids are in your house, little, wanting to talk to you, wanting to be seen with you, for only so long. My baby has just really gotten the grasp of the word "No" and for sure has on her "sassy pants" and I realize she isn't the little baby girl she was a year ago. My middle guy will climb into my lap for only so much longer and my big guy I know is nearing the cusp of not kissing me in front of his friends.  And the dinner table is a place for conversation, for talking about our days, for planning tomorrows, for being together. Ok, I admit that the family sit-down is fast approaching extinction along with proper use of the word "well". We still manage a few times a week to gather all 5 of us and the kids and I aim for it every day we can. Even if it's pizza, the tv is off, the phones are on the island or turned face down, texts don't get answered. We are all present in the moment.

I'm trying to teach my kids that they need to know how to speak to each other, to Ed and I, to have simple table manners. How can your child ask you to pass the potatoes if you have your nose in the Huffington Post? Think how your parents would have reacted if you sat playing Minecraft while mom dished up the pot roast. I can tell you right now that my device would have been under a car tire faster than you could "like" a post about spending time with family! With all that we do as American moms these days, for the sanity of society, get the kids a restaurant bag and put phones in pockets or face down. I was wondering what the kids would do as teens... perhaps I will do another post in 9 years when I have 2 of them. Remind me to let you know what we do then, ok? Then again, they could just do what we all did: BE with each other and interact. There's a novel idea.

The other side of this argument is that the screens are just far to interesting to put down. We aren't just looking at ads and videos of cats jumping into boxes, we're literally changing the world. Case in point, Egypt. Social revolution via Twitter. Second case in point, the Ice Bucket Challenge for ALS, bringing awareness and raising money like wildfire for an illness few adults, let alone kids, new anything about until they were tagged and challenged. Hashtags, trending, viral videos, breaking news, shopping!-- we can find everything we need in the palm of our hand. The world is there for us to explore and I can read about how spiders are bigger in urban areas while I sit next to you on the couch so why in God's name would I talk to you? Are you going to tell me about the spiders? Probably not. But I can tell you things you won't find in the palm of your hand (though I bet you ten bucks you're reading this blog on your phone, aren't you? Hello irony!). I have facial expression and inflection of tone. Warmth, emotion, reaction to you. Sure we could DISCUSS the spiders but you'd have to put down the phone first.  And keep it down.

I read a book a while ago and I seriously need to revisit it: The Winter of Our Disconnect. It's about an Australian single mom of 3 teens who pulls the plug on basically everything for six months. It's non-fiction (my preferred genre) and as a writer herself, Maushart discusses both the pros and the cons of screen exposure. It's a fantastic read for anyone trying to gain better understanding the implications of being "plugged in." It helps you look deeper at the damage technology is making on our societal connections, especially our family connections. Radical unplugging is a concept I have toyed with since reading it and then I wonder... how could I? My cell is the number anyone who matters calls (like school!) or texts. I pay my bills on it and email mom pics of the kids. Heck, I wrote half the post about skunk smell removal on the Blogger App on my phone. It's my alarm clock, my calendar, my weather station, my music. My catalogs, my reward system for the kids, my camera, video camera, star chart, travel agent, diet log, pedometer, phone book, concierge, and coupon book. There must be a happy medium between current use of electronics and complete abstinence. It's a place I want to find and model for my kids as they inch closer to the age of owning a smart phone.

That said, we all should look to find the happy place with our electronics. Think about how your kids are using or not using them. When are we connecting, really connecting with family? What message does it send each other when we would rather stare at Facebook than at each other? I promise not to sigh too loudly when I see the kids engrossed in their iPads at the restaurant tables from now on if you promise to crack out the crayons more often, ok? Good. One step closer to a world free of (predominately) idiots.

Thursday, August 14, 2014

Do you smell something?

My beloved dog, Odin, all 110# of him, gentle giant to one and all, is incredibly smart. Loyal, works hard to protect us by barking at birds flying by but also by running up to the unsuspecting electric meter reader man and insisting upon being pet by leaning on him til he practically falls over. Odin bows to the cats, whimpering a whine of confusion because all he wants to do is play. I suspect this is the same behavior that ensues when he attempts to play with the locals. And by locals, I mean the skunks. 

Several years ago we had a bit of a skunk problem in the neighborhood. We were even blessed with a nest of youngsters under the deck. I'm all for critters making their homes in our yard but after Odin got sprayed no less than five times in a span of about six weeks, I called in the exterminator. And the lawn guys to treat the grubs because that's their favorite food in the world and we had a lot apparently. Yay, skunk central. 

If I learned anything from that summer, and summers, falls and into early winters, it's all about skunk musk, removal and the general odor removal from the house. The nerdy scientist in me had to find out what the stuff was, how far it sprayed and, most importantly, what neutralized the hideous scent. 

If you've never had a dog or other animal (or self? Oh that'd be unfortunate!) sprayed you know it's not the same as that whiff you get passing by a dead skunk on the road. It's pungent, permeating and actually burns your eyes and throat. To hell with mustard gas-- skunk musk is the real weapon! 

So, Odin got sprayed last night for the first time in about 2 years. I know this because I was pregnant at the time, Ed was on ER call and of course not home. To bathe a dog of Odin's stature, it requires at the very least a stand-up shower with a removable sprayer, a prong collar and leash, and an adult to bathe him. When you're in such tight quarters with the hairy beast, you're bound to get wet, but you have options. Suck it up and wear wet clothes (that get skunky and hairy), change into a bathing suit (which will also get hairy and skunky and since you're either alone or with your spouse doing this, totally the easiest option. Not.), or strip down to your birthday suit. Option C, when 8 months preg, alone at roughly midnight, was my go to method. That's an image for the record books... I digress... The take-away message here is that if your dog is bigger than a cat and has to we washed in a tub, nudie up and prepare to have one very annoyed pooch. Do NOT risk your clothes. Trust me.

Back to our topic at hand: Skunk musk. Skunk musk is oil based animal secretion. The offensive odor is caused by a variant of a sulfur compound, which explains the burning of your eyes and throat when you have the "pleasure" of coming in close contact with it. Knowing this, we are able to figure out how to remove the musk from the animal (easier if it's a direct hit to say, his face, than the global musk-misting) and to a degree, removing the lingering odor from your home, hands, clothes you were wearing when he came in the house and rubbed up against you... you get the picture.

Priority one is getting the dog to the bathroom. Lock him in there while you get your wits about you, wake your spouse (if they didn't wake up with your screaming and swearing), strip down, and gather your provisions. 
You will need (for a descent size dog):
  • a restraining collar such as a choke or a prong and a water proof leash
  • a stack of towels, one to put outside the shower, one for you, and at least 2 for the dog
  • BABY shampoo (because your good Aveda stuff will burn his eyes and it's for blondes and he's a brunette)
  • 2 buckets/pitchers/bowls/empty 2L bottles if you don't have a detachable shower head
  • a bottle of wine
Get into whatever you are going to be wearing (or not) for this adventure, take a large gulp of that wine (you knew there had to be drinking involved, didn't you?), and put the collar and leash on Fido. Climb into the shower.

Take a moment to think back to chemistry-- remember how soaps are designed? They have an end that loves water and an end that loves oil. We have a lot of oil-based ick that needs to be rinsed down the drain. The key here is to locate the source of the musk on the dog-- find the wet spot. You might even be lucky enough to be able to SEE said spot. Get a handful of soap when you find it... whatever you do, DO NOT WET THE DOG (yet). DO NOT WET THE DOG.


The goal here is to not let the soap bond to anything but the oil of the musk. Yet. If you have that direct hit to the face/neck/side this will be easier than if your Newfie is down-wind of the mist of musk. Apply generous amounts of shampoo, and when I say generous, I mean like half the bottle if not more for the misted dog, and 2-3 handfuls to the direct hit. Work it in-- it will sort of lather up. Do try to keep it out of the dog's eyes because the sulfur will burn. Use baby shampoo because at least if it does get in his eyes, they'll only burn from one thing. If you have the misted dog, do your best to lather him up entirely without water. I usually just sniff around to see where it's worst because Odin has such an unruly thick coat that it would take a case of shampoo to fill the hair and a week of rinsing to get all the soap out. Do your best, use your good judgement.

Now we have a very soapy, interesting smelling dog on our hands and inevitably something you have to wake up to do in about 5 hours. Let's get going. Get the shower running on a warm water temp and start rinsing. Rinse until no suds come out and trust me, this can take a long time. It's essential though because if the soap stays, so does the oil and that stinky sulfur that is so awful in the first place. It will be one of two places-- the dog or down the drain. Pick one.

After a while you will have a clean dog that will probably not smell that horrid of skunk. It does not come out 100% and everything I've read says there really isn't a sure-fire way to neutralize the smell. Dry the dog off, finish the wine and go to bed. Clean the hair out of the shower in the morning. Address the stink anywhere else tomorrow also.

How to deal with clothing or furniture or carpet...
Baking soda. I swear by this stuff. It's the alkali to the acid, the gold standard of odor removers, cleaners, etc. Just search the web and you'll find a million uses for it other than making your cookies rise. For the clothing, if they can be laundered in the washing machine, add in a half cup (or so) of baking soda. (This works fantastically for removing the smell of vomit also, which any parent will tell you they have had to take care of at one point or another) This should do the trick. For carpet and furniture, sprinkle baking soda on the area that stinks and gently rub it in with your hand, like you would the carpet deodorizer powders. Let it sit for a couple of hours and do it's magic then vacuum it up. If the smell lingers still, I revert to a favorite old stand-by: Febreeze. No, I'm not getting paid to say that. It just works like a champ. 

Those are my methods. Now I'd like to discuss some other deskunking options...
1. Tomato Juice. The biggest problem with this is that you basically need to soak the dog in tomato juice which is a problem for many reasons: Who keeps that much tomato juice around? How much does that cost? How do you get the dog to lay in the tub full of tomato juice? What happens when he shakes? You see the problems? I have no idea if it's a good deodorizer. It very well could be, however practical it is not. 

2. Baking soda, hydrogen peroxide and soap. I'm not a fan of this method because I don't think well in a crisis or in the middle of the night when I'm woken up and definitely not when both occur simultaneously. This method requires measuring, making sure your hydrogen peroxide hasn't degraded into water, and repeating. If you get your proportions off, you can harm your dog. If it gets into his eyes, it can burn. So yet again, it may work but it's not my personal go-to method. Ever.

And remember, there's the final fix to your stinky companion: The groomer. The pro's have special shampoo and patience to removing the odor that no layman has. Leave the dog outside and take him to the groomer promptly when they open. No appointment available? Well maybe they'll keep him so you can go home and open the windows.

Thursday, December 30, 2010

More comfort food to comfort you.

If you read my last post, you need comfort food. (Do I ever really eat anything BUT comfort food? No.) If you skipped it, you probably could still use something yummy. Anyway, lasagna was one of the items that we got the most of after Will died. Hearty, big pans accompanied with fresh salads and crusty bread and a plate of cookies or brownies for dessert. I will have to say that the only type that didn't make me sick after 2 days of eating it was the vegetable lasagna from Kelly. Don't get me wrong, the meat type was good, but it just seemed totally endless. It is still hard for me to eat it b/c I ate so flippin' much of it over the month of January. The following recipe I got from Liz, years ago. By years, I'm talking like 15 years ago. I think I've made it maybe 2x but it's fabulous. Really good stuff. Slightly labor intensive but a labor of love because it's so tasty and fresh. I'd say make it in the summer when you can pop to the farmer's market to get the fresh veggies then stick it in the freezer and eat it when the weather is more conducive to heavy pasta dishes. I'd even be tempted to add in a little zucchini or spinach, maybe even fresh peas or green beans (French cut), carrots would be nice too... as long as you keep the total amount of veggies consistent and cook/drain everything prior to baking it. It's a little long go, but you can do it. Patience, Grasshopper, patience.

Liz's Vegetable Garden Lasagna
1 eggplant
1 t coarse salt
8 tbsp olive oil
1 green pepper- julienned
1 red pepper- julienned
1 large onion slivered
12 oz mushrooms- thinly sliced
1/4C flour
8oz lasagna noodles
3C tomato sauce
1 1/2 C Bechamel Sauce (see below)
8oz mozzarella, grated

Slice eggplant into 1/4inch rounds. Sprinkle with salt and let drain 1 hour. Wipe off salt and pat dry.
Heat 2 tsp of olive oil in a large skillet. Add peppers and onions and saute 10 minutes.
Remove peppers and onions and add 1 tsp of olive oil and mushrooms. Saute 5 minutes. Remove from pan.
Dredge eggplant in flour, shaking off excess and saute slices on both sides until lightly browned, adding more oil as needed. Dry on paper towels.
Preheat oven to 350.
Make Bechamel sauce (see below).
Cook lasagna noodles per package.
Spread small amount of tomato sauce at bottom of a 13x9 inch baking dish. cover with 1/2 the lasagna noodles, cover with peppers, onions, mushroom, and eggplant in layers.
Mix Bechamel and Parmesan cheese together and spoon 1/2 of it over the veggies.
Crumble the goat cheese over the Bechamel and sprinkle with 1/2 the basil, more tomato sauce.
Cover with more noodles, the rest of the Bechamel, basil, tomato sauce, and the mozzarella.
Cover with foil, back 30 minutes.
Uncover and bake 15 minutes more til brown and bubbly.

Bechamel Sauce
1/2 stick of unsalted butter (USE BUTTER, not margarine)
3T flour
1 1/2C milk
pinch of paprika
pinch of nutmeg
salt and white pepper to taste

Melt butter in sauce pan. Add flour and cook, stirring, over low heat, for 3 minutes.
Raise heat to medium and slowly add the milk, stirring constantly with a whisk.
Continue to whisk until sauce thickens, about 5 minutes.
Add spices, salt and pepper.
Stir well and remove from heat.

Wednesday, December 29, 2010

This is what nightmares are made of

Working titles include: Hell on Earth, Every Parents' Fear, Why I hate Christmas and New Year's,Why I have PTSD,or If this doesn't make you cry, you're dead inside

NOTE: DON"T let the kids read this.
Don't read it alone.
Know where your kids and parents are when you do.
Have the kleenex handy.

I'm hoping that if I write this out and put it out there in cyberspace that it will stop cluttering my head and I can sleep better at night. And function better in general. It's like moving a memory to storage space, a pensieve, if you will. I appologize in advance for: Typos, bad grammer, choppy thought pattern, swearing, or insulting people. The emotions surrounding that day are very raw and painful. Don't take anything personally.

So here we go...
December 29th, 2008. A Monday.

Ed woke up and went to work, the plan was to see a half day worth of patients. He left me home alone with the 2 boys, my first time alone with the 2 of them. Slightly scary prospect but I met it with gusto, or at least only a modicum of anxiety. There was a lot of snow and our car choices were Yukon or Sentra. He took the truck, leaving me w/o a car seat for Mike.

I woke up at about 7:30 to Mike fussing, crying, probably wanting his water. He was at an age (20mths) where I could happily, easily get him down for another ~2hrs after that first waking. After I put him down, I saw Will fussing in his bassinett (the pack-n-play) in our room. I picked him up, hopped into bed, latched him on and did what I usually did at 7am when I nursed: I fell back asleep.

Shortly thereafter I jolted awake, the kind of jolt where you sit up. Will didn't move a muscle. Most people, esp babies would have woken up to this movement and he did nothing but lay limp in my arms. I set him on the bed where I looked at his little body, his little face and saw a little blood coming out of the right side of his mouth. My right arm reached around and dialed 911.

My son is unresponsive. Help me.
You need to do CPR.
Walk me through it. I know what I'm doing but I need you here with me. (I started CPR)
I moved to the front hall and kept doing CPR
I unlocked the front door.
Odin, the dog, sat right by me as I screamed at the top of my lungs for him to wake up, to cough, to twitch, to do something.
As I kept blowing air into him, blood mixed with milk kept coming back up into my mouth
He lay on the oriental rug in the hall in his little Carter's striped sleeping gown with jungle animals appliqued to the chest, lifeless.
I had faith that the paramedics and then the ER would make it all better, this was just a fluke, they'd bring him around. When they arrived, four minutes later, I stepped into the kitchen with the Lake County Sheriff, who I might add, was the biggest MORON to walk the planet. Seriously, STUPID cop.
I now know what the response time for 911 is to my house: 4 Minutes.
I crated the dog.
I gave him the wrong kid's name.
I asked him to go to the Clark's next door and shoo'd him out the garage. He couldn't find their house, per his mouth when he came back alone. I called them. They came. I called my dad ...

Get over here now. Run every red light, drive 100 miles an hour, come NOW.

He came.

The cop called Ed and told him that Will was going to Northwestern Hospital. I had to correct him: Northwest Community. Ed called back, asking me what happened, if he was blue. I said no, yellowish. He headed to the ER after we hung up.

I went up to get Mike, change his diaper after the EMT's left for the hospital. As I was changing him, one of the firemen came up to say that Will's color was coming back. Thanks for the false hope, asshole. I changed my clothes.

The cop said he needed my shirt that I was wearing so I sent him up to my closet, telling him it was on the floor in the middle of the room. He came back downstairs, asking which was my closet. My words to him I actually remember, "Shot in the dark there buddy, it's the closet with the WOMEN'S clothing!" I said this guy was an idiot, didn't I?

The cop asked a bunch more questions which I don't remember.

Tom Clark took me to the hospital, Renee sat with Mike. Tom drives really slowly. REALLY SLOWLY. I realized on the way there, while talking with him, that the year I was diagnosed with lupus, that fall, my mom had both her baby and her dad very very sick. My grandfather died the Feb after I was dx'd. Talk about stress and hell. Oh, wait, I think I can trump that...

Tom sat in the waiting room for 3hours, I think, waiting there incase we needed something. He drives slowly, obeys the speed limit, but is a wonderful soul who I'm thankful is my neighbor. Very thankful.

I walked into the ER and ran to the desk. I think they knew who I was. Someone took me back and to the right where I saw Ed sticking his head out of a bay... I could tell a trauma bay. I saw lots of people, one was bagging Will, one was doing compressions, one was trying to tube him. His little sleeping gown was on the floor. I screamed as Ed said, sitting me down, "These things sometimes happen. Take his hand. (looking at the dr's...) Stop. You can stop now."

And he was gone. They'd done everything they could. My baby was dead.

People who I don't know who they are came in and out. A nurse from L&D came down to see how I was and if I needed anything. Brought me a breast pump. I should have used it, but I didn't. Pam Ferguson, the bearevement nurse came with a big tub of stuff. She and Ed changed his diaper and wrapped him in a blanket that was a million times too big and loosely wrapped. I held him and he was still warm... for a little while. She asked if I wanted his handprint and I said no. I wish I'd said yes. She gave him a teddy bear. I took the bear home with me and sleep with it every night. Other hospital staff came in to say they were sorry.

The theme song to ER played over and over, about every 10 minutes and really got on my nerves. It think it signals an approaching ambulance.

We were in Bay 20.

My dad came, Ed's parents came, my mom came with her friend Anne who drove her (and who, incidently has lost 2 babies through infant death), Ed's brother, wife and son (not quiet a year old) came. We jammed into the little bay, playing pass the baby, holding him as much as we could.

Ed left for a period of time that seemed an eternity. I asked a nurse where he'd gone and she said to see patients. I lost it on her. LOST IT. Screaming. Seriously? See patients? Did she just miss what went on here? He came back and had gone to the bathroom. I think he went to punch walls and cry alone; he doesn't cry. I've never seen him cry, even then. No tears. But his eyes were red. He denied but I really think he cried.

Dixie (MIL) asked the pastor (yet another of the many people who showed up) if she would baptize him so there we were, gathered around the room, as she baptized Will with water from the handwash sink. We tried and tried to get ahold of Tom Dickleman w/o luck-- he was getting a colonoscopy. (everything turned out fine on it, but bad timing for us) He called that evening, I think. She (pastor) called the funeral home and they came over at about 3pm.

I called Kim. Dad called JT and Liz and Marisa, I think. Kim emailed some people. My cell phone battery was dead and I didn't have anyone's phone number written down. I do now.

In the meantime while we waited, sometime before the funeral home guy came, not sure when, Ed went home to get Mike and I wish he'd gotten one of HIS blanets and HIS outfits but whatever. I just kept thinking, this body isn't my son. His soul has left, is in heaven or whereever, but this is just his body. This isn't my son. My son is alive. I was in huge shock.

Sometime in there the cops showed up to, of all things, question the hell out of me. There I sat in the most god-awful uncomfortable of chairs, moved up onto the gurney, holding my dead son, while they asked me things like was I on drugs, alcohol, mad at anyone in my family, feeling depressed and they wanted the whole run-down of the morning. They said they needed my bra b/c I was wearing it when I was nursing. I gave it to them. My $40 really nice (for what I'd spend on a nursing bra then) supportive, good fitting Victoria's Secret bra, that I wasn't even wearing at the time, I handed over to the cop who was wearing gloves and holding a brown paper bag. I asked if I was going to be able to go home or if it was a crime scene and if I was going to be arrested. They said no. I think the officer who interviewed me did everything he could to hold back tears. He said he had 2 little boys. Or maybe 3. Can't remember. He was bald. The other guy was tall and black and suggested I voluntarily check into the psyche ward for at least a night. I didn't.

Everyone left except Ed and I. Mikey kissed his brother good-bye.

The funeral home man came and was very very nice. He didn't bring in a body bag or anything. The pastor stayed with Will while we left, both of us saying good-bye for the last time. Wait, no. The rest of the family went out to the waiting room and ran around with Mike. Then they came in and gave us Mike when the funeral guy showed b/c Mike came home with us.

As I walked out of the ER, holding Mike, I told him that from now on, whatever he wants, he gets. A puppy, a kitten, a horse, a boat, it's his... as long as he promises not to die also. Had I not had Mike to hold onto, to keep me grounded and to remind me of what is important in life, I think I would have died right then and there. Or run away. Or run away to die. I don't think I could have handled it. Sorry Ed, but you know he kept us both from completely losing our shit.

I don't remember the drive home.

When we got home, there was a bunch of people sitting at the kitchen table. Family. I walked right upstairs and took my migraine meds which I knew would knock me out for a good 8hrs. It didn't and I don't remember anything from the rest of that day.

I only remember bits and pieces of the next 10 days leading up to the memorial service. Tom D came over to talk with us and a deer came through the yard, really close to the house. Lots of people brought lots of food, primarily lasagna. People send flowers. Peopled called to ask what they could do and I said come help me clean and no one said ok. Mary called the hospital to find out how to shut off my boobs. Cabbage and antihistamines. There's no magic pill. Liz came on the 2nd or 3rd and stayed a long time and kept me from being alone in my head. People who'd lost their babies came out of the woodwork and we learned that there are groups within the exclusive club that no one wants membership to:
  • miscarriage prior to 20wks,
  • miscarriage after 20wks requiring the baby to be delivered usually induced,
  • loss at birth (didn't come home, usually the parents and dr knew it was coming, or it was b/c they were really premature),
  • neonatal or pediatric death where they came home but they knew they/parents/drs weren't going to make it incl those kids who contracted some kind of terminal illness,
  • and sudden death, both of infants and older kids,
  • and then death of adult children.

We fell into the SIDS category since our son SHOULD have lived. The dr's wanted an autopsy and the county required it b/c technically Will died at home, so the county coroner did get samples which were sent to the neonatal pathologist at Evanston Hosptial b/c the OB's really wanted to know *why* he died. The report came and satisfied them for their needs, but at the time of our OB follow-up, we asked that they not tell us. We didn't want to know. It wouldn't make a difference; Will was gone. It took a long time but Ed has finally found out just what happened when we met to talk to the neonatologists before Christopher was born (the CYA meeting as I like to call it). I still don't know, and it might be years before I am strong enough to find out. I do know that what killed him will not happen again to another baby that we have, or at least has such a small chance of happening that we can say that. It was nothing to do with my lupus. I did nothing wrong. And after thorough review of medical records by the experts outside of the situation, no one missed anything.

I know all that and I still don't sleep well. I have a lot of anxiety regarding my kids' health. I keep a stethoscope in Chris' room and listen to him breathe while he sleeps. I just get up, check, and go back to bed. My pediatrician, Dr Feldman, is a godsend and so tolerant of my neuroses. My friends have been heaven sent too, especially when they deal with me calling them at random hours sobbing to them, not Ed, b/c I don't want to upset him.

It's been hard on Ed. People don't ask him how HE'S doing, they ask about me. He walked into the ER, not knowing much, to find his 11 day old son on a gurney with someone doing chest compressions and the monitors showing nothing: no rhythm at all. He was traumatized like me, but differently. He has to work in the ER (not daily, thankfully) where Will died and a few months later, had to see a patient in that same bay. He sees the dr's who couldn't save his son. He sees me a mess and deals with my anxiety and sadness and is in his own way, the greatest person for me. He keeps me going and forces me to get out of bed.

A lot has changed in *me* since then and if you know me personally, you know how I've changed and that's really for a different entry. My marriage changed, my friendships changed, my faith changed. But like I said, if you know me, you know how I'm different and that's all for a different entry.

I feel better now that I wrote that down... and the next entry will very likely be a recipe for vegetarian lasagna.

Tuesday, September 28, 2010

Asian Chicken Noodle Soup

I fee like crap today. Honestly. I went to bed with hives (a strange thing that's been happening lately, go figure, stress I think) and woke up with a lovely cold that was bubbling at 7am and now, at 10:30, it's at a rolling boil. I expect it to boil over at about 4. When I feel like this, I go for food that feels good to eat. About 2 years ago I came across a noodle soup recipe in a Nigella Lawson cookbook that I fell in love with. Chicken noodle soup but better. More flavorful, a little spice, a lot of noodles, a little different on the veggies. We make a lot of Asian foods in our house, probably because they are so stinkin' easy. I keep bags of frozen mixed Asian veggies in the freezer and various noodles including udon, ramen, and rice, in the pantry. I don't keep real stock on hand because I just don't have the freezer space. I use Better Than Boullion. So, here's my take on Ms Lawson's noodle bowl...

6oz of your choice of Asian noodles (I use 2 packs of ramen usually, WITHOUT the seasoning pack)
3 cups of your favorite broth or stock (make it coordinate with your chosen protein)
2T soy sauce
1t brown sugar (light or dark)
1t Chinese 5 spice powder
1t fresh ginger (FRESH!)
3C of mixed Asian veggies (frozen pre mixed, thawed and drained, or a combo of stuff like bok choi, shitake shrooms, shredded carrots, scallions,sprouts, snap peas, baby corn, water chestnuts, etc)
a small handful of frsh cilantro, chopped or torn

Bring broth/stock, combined with spices, to a boil.
Add noodles and cook according to package directions.
For frozen veggies: Lower heat to medium and add veggies. warm til heated through.
For fresh: Add veggies while it's boiling and simmer about 3-5 minutes or til they are cooked to your liking.
Either way, add the cilantro right before serving.

Enjoy and thanks Nigella.

The bitter battle over forgiveness

This is long. Sorry. I will post the recipe for the comfort food later, the stuff I plan on cuddling up with later today. Good Asian Chicken Noodle Soup.

I am wondering and hoping that if, by writing, I can work out in my mind this emotional tug-o-war going on. The back story: Will died. Many many many people were there for us in ways I couldn't imagine, doing wonderful things. There were also people who basically did nothing. Nada, zip, zilch. Or maybe they just posted a condolences comment on my FaceBook wall, or told my mom or dad how sorry they were. Something little, and what I could say is the "knee jerk reaction" to finding out someone died. But a child? How do you not react bigger and bolder? There were people who actually stopped talking to us. (Crazy! But God's way of purging our life of the icky people that needed to go upfront.) Ed reacts one way to these MIA people that are still sort of around: Fuck 'em. He really wants nothing to do with anyone who was not supportive, and to a degree I don't blame him. Then there's me... I have a more forgiving attitude but usually only from the people who I didn't expect to comfort us. Like I judge everyone individually. Where do you stand in my life? How often do we talk? How hard would it have been to drive into Lake Forest that morning in the snow storm to pay condolences? Have you usually been there for me? Did you, too, lose a child? Are you someone who I would/could accept growing apart from over this? Are you someone I *want* to stay close to? Have you crossed me before? How much drama's in your life and can I deal with keeping your drama and dealing with my new drama?

In this digital age, our relationships with people are so different. We know what's up with people easier, can send a quick note, a photo, a video, in the drop of a hat. We feel closer because we know what's going on, but is there the personal emotion attached? Not always. It's like watching reality tv (Housewives type, not Survivor) but you've met the person in some capacity. So strange and really hard for me, perpetual wearer of the heart on the sleeve, to not hold people closer than they hold me. So there's that, the shuffling and dealing of the friendships and acquaintances, PW (post Will).

I have come up upon this battle of emotions recently when challenged to be compassionate towards someone who I know, but not enough to call on the phone without hunting around online for a phone number, maybe calling someone or 2 first to get said number, but whom I know would be pleasant and happy and appreciative to hear from me. They weren't there for me when Will died, but I didn't expect them to be. Or did I? It's the battle of my heart vs my gut vs my head. Do I be there for them in the capacity that society recommends (card, flowers, small gift, phone call, etc) or do I let it ride with just a small note and move on, since that's the level of support I got during my drama? My heart says reach out like you like people to do to you (Golden Rule, do onto others...). My gut says screw 'em and do nothing. My head says find a happy medium. Not that I'm really one to do religious quotes, but the Lord's Prayer even says to "Forgive us for our sins as we forgive those who have tresspassed against us." So if I follow my heart or head, ignoring my gut, am I also seeking forgiveness in the sense that I am now ok with them not being there for me when Will died? You can see the conundrum here, right? I know I can be ok with our relationship, but I know damn well that the sadness will take much longer to lift. Not just this time, with this person, but with so many others. I worry that if I follow my gut and do nothing, I will become this ugly bitter jaded person that I do not like, even though my relationship with this person really hasn't changed. Maybe in my head it would have though. It's like some kind of weird game that only time can work out I think. Or I need to just pick one and go with it and suck up the consequences if I don't like them. Things won't get worse I know that... The "old" me would have gone with my heart. But I am not that person I used to be.

Clear as mud, huh?