My husband and I have had a rough month.  He has worked many late hours and every weekend.  This week I have had three late nights in a row working, a kindergartner who had too many half days this week and a parent teacher conference that lasted an hour and a half!!  I hoped this snow was going to happen and after working a party last night my dumb ass was in the supermarket at midnight buying milk, soy milk, and other essentials like Oreos with about 900 other people.  I called out of work tonight.

When I heard the snow was coming I was so excited.  Ryan has seen only one snowstorm of over seven inches and that was when he was two years old.  Global warming has never let Aaron see a major snow storm.  We NEEDED to be snowed in.  This storm has not disappointed us.  It is snowing a ton and we only had to leave to get Aaron some antibiotics for an ear infection.  Which my husband and Ryan happily obliged.   He has had ear tube surgery twice so I know when he has an ear infection.  He went outside for only a little while and when he came in he got back in his PJ’s and fell asleep on the couch for 1.5 hours after some Advil.  He had a fever, copious amounts of eye goo, and ear pain.

I did a mountain of laundry, cooked for Aaron so that he had meals when we went visiting over the holidays, and I made 15 lbs of my famous cookie dough to bake tomorrow.  It was lovely to twitter, listen to blogs being read to me by the computer, and listen to online Christmas music.  We then decorated the tree that has been sitting in my dining room for a week.  My husband and I showered the kids and put them in clean PJ’s, loved on them and put them to bed.  It was a day I needed and better than a spa day.    As I write this the snow is still piling up and we expect almost 20 inches.  Thankfully, my next door neighbor has the nicest snow blower I have ever seen.

Large snowstorms have brought good things for me as an adult.  In the giant blizzard of 1996 we had reservations at a very fancy hotel downtown courtesy of my husbands boss.  We got to the hotel via subway and so did our now deceased boss and friend.  We all drank in the hotel bar and then when Rick our boss-friend left we swam in the glass dome covered pool and ordered room service.  The next big snow storm  was over President’s weekend in 2003.  I was 9 weeks pregnant with Ryan.  My husband and our band mates dug out our corner of 49th and Cedar.  On Presidents Day I had my first OB appointment.  On account of the snow the only doctor in the office that morning was the famous Dr. Mama who I was fated to meet.  He is an AMAZING doctor who took care of me during both of my pregnancies, advocated for me when I was having Aaron and helped me avoid a C-Section, and did a little thing and saved my friend Cecily’s life twice and made sure Tori arrived in the world safe and sound.  This storm better bring amazing wonderful change.

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My sister is doing well.  I saw her last Thursday and this past Monday in anticipation of not getting to see her again till after New Year.  She and I have fallen back to a familiar routine that we had when she had her bone marrow transplant over 20 years ago.  She looked so much more herself when I left her on Monday because before she was looking like an elderly dying woman.  I hear this week she is walking down the hall to the applause of the hospital staff but still on the ventilator.  She does more and more everyday and the fact she is alive is nothing less than a miracle.

She and I have had a talk about where her care is going.  She is going to be where she is now for at least another 8 or more weeks, moving to a step down unit soon, and finally out of ICU.  Then she has to have extensive lung and physical rehab, and she is going to need heart valve surgery.  She has already picked a doctor and the hospital to have her heart valve surgery.  My Mom and Dad bought her a small net book with my help so she can get online.  It was delivered today because texting her is MADDENING.  Bottom line she is alive and even though she is so sick she will be out of the hospital by summer.

Anyone near the snow enjoy the rarity of a December Nor’easter.  Everyone else I wish peace and happiness.

So now you know their names I am ready to show their faces. My co-worker who is a photography student had a project to take pictures of kids.  I brought the kids and he the camera.  We had a great hike in the woods at the end of the block.

This is a great picture of Ryan.  This is one of the only times he did not make a tough man face the whole afternoon.

This is my green-eyed monster Aaron.  He still has the most delicious cheeks.

These are the best friend brothers in their native habitat doing what they do best.   My friend left that day and kept saying how he could not believe the amount of energy they had.

I have read that Montague Summers, in his translation of the Malleus Maleficarum notes that red hair and green eyes were thought to be the sign of a witch, a werewolf or a vampire during the Middle Ages;

Those whose hair is red, of a certain peculiar shade, are unmistakably vampires. It is significant that in ancient Egypt, as Manetho tells us, human sacrifices were offered at the grave of Osiris, and the victims were red-haired men who were burned, their ashes being scattered far and wide by winnowing-fans. It is held by some authorities that this was done to fertilize the fields and produce a bounteous harvest, red-hair symbolizing the golden wealth of the corn. But these men were called Typhonians, and were representatives not of Osiris but of his evil rival Typhon, whose hair was red.

You have to get past me to get to my redheads, none of this human sacrifice stuff with my rare gems. If you even think about kicking my gingers you have another thing coming.  Good thing I still have my punk rock stomping boots to kick back.

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Today my sister was panicking being off the respirator. She was tired and wanted to sleep but was afraid she would not remember to breath on her own.  She took out her handy new querty keyboard phone and texted her best friend who sat with her so she could sleep and if needed be reminded to breath.  That is a friend.

Finally things around here have a less urgent tone.   My sister is still in ICU but she makes gains daily.  My Dad has been doing exercises with my sister while she is in bed 2 or 3 times a day. Last night she walked 3 steps from the chair to bed.  That is huge for someone still on a ventilator and who was bedridden for over 3 weeks.  She decided to put off the angioplasty till she is stronger.  She fears a test like that will set her back and she has waited this long she can wait another week.

Poor Aaron has been in full day preschool way more than once a week since the Phillies were in the series due to a mixed up work schedule. He was overjoyed that I picked him up at noon today.  I gave him lunch, he helped me do laundry, and I read him some books.  We picked up trash while walking to get Ryan at school instead of driving the 6 blocks.  I let Ryan run wild all the way home from school.  We did homework and I am getting ready to go to work.  I stopped jumping every time the phone rings thinking this could be, “the call”.

I am due a little normal time.

My sister today sent her husband out to get her a phone with a keyboard because she still can’t talk.  She needs to give orders via text.  I love that! Fight on P.

We went to one of our favorite Christmas events today, The Toy Truck Parade!! It is run by the only Country music station in the city.  Disclaimer: I really really hate modern country music but this event rocks.  Imagine the biggest and baddest trucks all dolled up for Christmas filled with toys for the needy.  We always arrive early so the arts and crafts table was empty and donuts plentiful.  We then watch the parade and take off before the event gets packed and the country music starts. The boys were more interested this year than ever before.  Ryan was eating a chocolate doughnut while waving his American Flag. This year finally the boys didn’t spend the morning bonking each other with the flags.   The boys were videoed about 20 times by NBC10.  Guess who’s DVR is taping the news.

We left the parade, had lunch, and did a few chores an the infamous Cecily and Tori met us to swim.  It amazed me how emotionally cleansing the pool is for me. I chatted with Cecily and hung out with the kids.  Aaron charmed a huge group of 12 year olds that adopted him and indulged him in his every ball playing, diving board jumping whim.  Ryan swam many many laps, and went down the huge slide over and over.  I joined Ryan on the slide and ran into a therapist I had when I was 23 years old.  Talk about freaking awkward. We caught up a little and figured out we live close to each other. Weird. I watched Tori spin, spiral, and dance in the water.  She was loving the deep end today.  For me swimming can wash away many problems.

On my way home it was snowing snowing snowing.  We plugged in the Christmas lights and started making dinner.  I called my sister K who was on the road traveling back from New York.  They say that my sister P spent over three hours off the ventilator today! How absolutely exciting.  Her biggest remaining hurdle is her heart. She has a leaky heart valve that happened when she had her heart attack.  They have her on drugs and keep having to give her blood. Otherwise she is forging ahead nicely.  She is writing to everyone on paper and K said when she asked her, how are you?  P replied I feel like a freaking circus side show.

Having an ADHD child is something I would not wish on my worst enemy. It tests who and what I am made of daily in a visceral way.  Nothing else has tested me in my life like parenting this child and he is only six.   I am starting to feel that if I can keep him alive long enough he may get some sense.

Tonight was one of the roughest parenting nights I have had since Wildman (fuck it, his name is Ryan, enough hiding behind a pseudonym) was four years old before the interventions and behavior modification.  Let’s begin after school.

After school we spent a little time on the playground with Ryan, Little Boy A (who is Aaron by the way) and their friend S.  It was their normal play of Ryan torturing S. Ryan does not torture any other kid like he does S.  He wants S. approval so much he can’t control himself and resorts to negative behavior.  I swear sometimes I wonder why S even gives him the time of day.  I could see in Ryan’s eye that I had a long night ahead. We went to the grocery store and they were actually ok.  If the boys are well-behaved and helpful while grocery shopping they both get two quarters each.  I let them buy candy from the machines at the front of the store with one quarter and the other quarter they give to the charity of the week collecting in front of the store.  The cashier gave both boys a grocery bag so they had a place to put the candy. Both the cashier and I told them under no circumstances could they put the bag on their heads.

As soon as we merged into traffic both boys started putting the plastic grocery bags on their heads and tightening it around their necks.  I quickly pulled over and took the bags from each boy.  This resulted in them screaming all the way home and acting out.  Both boys then got out of the car and helped me bring all the groceries up.  I immediately could see some of their behavior was hunger and I set out to put the groceries away and start an easy dinner.  As I rushed to do all of this Ryan was in the kitchen every five seconds. Can I have a glass of seltzer?  Yes, as soon as I get the groceries away, please find something to do in the living room for 10 minutes.  Five seconds later.  My treasure box (a beautiful finished cigar box that I got for each boy for their found treasures) has been on time out for a week can I have it back?  Yes, but please be patient I will get it for you after dinner.  Five seconds later.  Can I have some seltzer?  You get the picture. After the 90th question he went in and hurt or took something from his brother.  Even though they are 20 months apart Ryan is over 30 lbs heavier than Aaron and can take anything from him easily.

I told Ryan to go into his room till dinner was ready because I was making dinner and putting groceries away and I did not have time for his negative attention seeking and chaos making.  This is the part of ADHD I hate. Ryan in some ways never got older than 18 months.  He never thinks anything through and never considers the danger of his acts.

After dinner as we went upstairs he told me while he was upstairs earlier he climbed to the top of my dresser and got the treasure box off the top of the TV.  GASP HE CLIMBED TO THE TOP OF A TALL UNSECURED 4 FOOT DRESSER TO GET THE TREASURE BOX OFF THE TV WHICH WAS ON TOP OF THE DRESSER.  All of a sudden I couldn’t breath.  I got so upset I shook. I sobbed for a good long time.  I know how completely dangerous that was and I have read the stories of kids dying with TV’s toppling. I have had enough near death instances with loved ones this year that the floodgates opened and I sobbed all the tears I never let myself have the luxury of crying.  I cried for the fear I had when my husband underwent heart surgery, I cried for the hell that was this summer, I cried for my sister P and how close she came to loosing her life, I cried for my Ryan’s bike accident, I cried for stupid fucking food allergies, I cried for ADHD, I cried for the lack of compliance on the school’s part for Ryan’s IEP, and I cried because I was just plain tired because I work at night.   As I cried I could hear my sister K’s voice in my head calling me a drama queen but I didn’t care. Fuck It.

Something had to give.

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News out of the ICU  continues to be good.  She is miserable in the ICU but she is starting to  eat and they turn the ventilator down a bit every day.  Tomorrow K is going to NY.  She works in the medical industry and she will bring back a fuller picture of what is going on.   We plan to have an intervention about her eating when she gets better.  We all want her around and that is something I won’t miss.

Being the parent to an ADHD child and a child with multiple food allergies leaves little space in our lives for spontaneity.  Wildman thrives on a set schedule executed with precision. In Little Boy A’s case I have to plan carefully if going out.  I have to make sure I bring food, epi pen, and benedryl, just in case.  I didn’t have kids till my late 30’s so this loss of spontaneity has been something I miss most since the boys arrived. As they get older they are of course easier but the above problems don’t go away.

We always find dining out an issue.  Sometimes if we bring some food and order some food we are ok but again this means planning.  If we want Wildman controlled and not acting out with his eyes rolling in his head we have to keep his schedule. He is happier which makes us happier.

Today I got a small amount of spontaneity and it felt oh so good. My friends Cecily and Charlie, called to borrow something.  Charlie was going to stop by after Wildman got out of school.  I then called Cecily and told her that Charlie should bring Tori with him. Cecily I guess decided to come too.  Then they hit traffic and got to my house exactly 10 minutes after homework was done.  This visit morphed from coming to borrow something to a really fun dinner for six with three wild kids who were stuck in the house in the rain going bonkers. We had the most amazing wild time till Little Boy A threw up.  It was just so fun though.  For a few minutes I felt like spontaneity was again someday going to be in grasp.

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Another huge day in the ICU.  My sister was out of bed and in a chair for over an hour today.  She actually stood up after 3.5 weeks of being bedridden and tried to walk with assistance.  She took the swallow test today and if the ventillator does not suck any of the dye ridden applesauce out of her lungs she can start eating.   My Mom gave my sister her glasses and they actually watched TV for a while together.  No word on her other tests but all this news is almost too goo to be true.  I really wish I could get up there this week.

Sorry for the extreme corniness.  I am overtired because I was awakened by many phone calls and starting to feel crowded by Christmas.  The bar is all decorated up like a smokey version of the elves tavern.  The pressure to get with the Christmas insanity is weighing on me.

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So today was a big day in the ICU.  For the first time my sister spoke over her ventilator.  She is asking a million questions.  Where am I?  How long have I been here?  What is wrong with me? She is taking a very active role in her own care all of a sudden with a ton of questions about every procedure.  My family is overwhelmed with this large burst of improvement.  I am over the moon.

I unfortunately can’t go and see her. I have a stupid cold that I caught from Little Boy A.

Back to work.  The beers don’t serve themselves.

With all the drama and stress in my month I took time out everyday and I posted in my blog.  This means I actually have some balance in my life at one of the most stressful times.

I think that blogging daily has been completely cathartic and the support so nurturing.  Thanks everyone and I will try to keep posting a few times a week.  Actually I am considering blogging daily in 2010.

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Funny and sad from the ICU.  P’s chest infection is affecting her heart. They want to do a test to find out what bacteria is around her heart so they can tailor the drugs to help her fight.

My parents were visiting and helping my sister today. P is more and more alert by the day and my Mom was rubbing her back and massaging her hands. The nurse on duty was new to my sister’s case and were telling my parents that they needed to keep the visit short ect ect. My Mom replied to the nurse I know you need to care for my daughter and I will step away as much as you need me to.  The nurse continued to give my parents a hard time.  After the nurse gave my parents a particularly hard time my sister raised her middle finger to the nurse high and strong as she walked out of the room.  That kind of fight will eventually have her sleeping in her own bed someday. I love my sister.

Part of the reason I blog is to jot down memories.  Someday I hope to print this out or send the boys the url and have them read what life what like as they grew up.  Today is lazy list day.  I am posting a few things I really want to remember.

1.  Little Boy A calls hand sanitizer, hanatizer. I love that.  I am not a big hand sanitizer person but Wildman’s school has it around and Little Boy A is enamored of anything having to do with the kindergarten classroom.

2.  Wildman constantly has paper and crayons in his hands.  He  draws almost every free moment. He wakes up before everyone else in the house and spends an hour drawing before we are up.  I love that he is getting more responsible, lately the only wall drawings have been in his room. He stupidly tags everything with his name and tries to deny it was him. I was like that at his age and I really am tickled he likes what I did because he looks NOTHING like me and is a clone of my husband.   I am in there somewhere.

3.  My husband bought himself a razor scooter that will hold him.  I  love looking out the window or driving up and all the kids in the neighborhood are scootering with my husband and the boys.  He is the pied piper of razor scooters.

4.  People tell me that eventually boys don’t want to play with girls or get choosy with who they will play with.  I love that my kids will play with anyone who is interested.  They don’t see race, sex, or challenges.  They see a kid and want to play.

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I didn’t get much of an update from NY today.  My Mom and Dad have been at the hospital everyday and they live about 45 minutes away.  When I saw my Mom on Friday she was gaunt and pale from being 76 years old and traveling to see my sister everyday for the better part of a month.  I convinced her that it was not such a good idea for her to be there everyday and she needed to take one or two days a week off the hospital.  My sister although still in ICU, is not as critical and if things were going badly my Mom could  easily get to the hospital.   I am glad she listened to me.

On my mega rides to Long Island I find that I am actually turning into my father and listening to some news radio every trip.  This last trip I was listening over and over about the “hot toy” of the season and how difficult it is to get it. As I listened I thought how glad I was that my kids are not caught up with “hot toy” hysteria.  Heck, I doubt they even know what the hot toy is.

My kids watch some TV but they still have little clue what is hot preferring bikes, legos, scooters, art supplies, and books.  Who tells a kid what is hot?  What is the status in having the hot toy?  Why would a parent spend the equivalent of quarter of a semester of college on this toy on ebay?

It infuriates me.  I am sure these kids who get whatever they want grow up to the entitled adults who won’t let you merge on a highway or walk past the dying person in the subway.  The whole thing makes my skin crawl.

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In the news out of Long Island. My sister had a very uncomfortable day. She is having alot of abdominal pain and my mother had a hard time understanding the doctor with an accent who is filling in over the weekend.  Updates from her like this makes me insane.

I love me a good road trip but these solo road trips to Long Island are killing me.  The radio sucks and I don’t have an IPOD.  Can’t chat on the phone because I don’t have bluetooth and it is illegal to talk on the phone in New Jersey and New York.  It is just  a little too much alone time.

My journey started at 4:30 am. As soon as I hit the Pennsylvania Turnpike I passed a caravan of about 15 big rigs carrying Christmas Trees.  Nothing says “Black Friday” than 15 semi’s toting what looked like thousands  of murdered trees.  It truly smelled great though.

I got to my sister at about 8 am.  She is still in ICU and not breathing on her own but her doctors told me she is better everyday.  They said she is taking little steps forward and they were more positive.  I only spoke to the resident. The other doctors were visibly absent.  I guess because of the holiday weekend and her improvements the medical staff are not as on her constantly. Her kidneys are doing better and there was no blood in her urine which is good.  She is on the vent but it is out of her mouth and it is now connected to a hole in her throat.  They were concerned about her right side.  She has not been moving it for a few days now.  While I was there she pushed on the nurse with both hands and feet strongly.  The nurse was excited and said that this was much improved.  She had just about equal strength on both sides. They took the oxygen monitor off her right hand and she moved it more, the oxygen monitor had a short cord.

She is a PISTOL. She cannot speak but she can mouth words.  She told me she wanted to GO HOME NOW, just like that. The doctor told her that she would go home but not for a while.  She also was asking me for something I could not make out. I was really thinking about it as I drove home.   I figured it out on the Jersey Turnpike.  She wanted her GLASSES.  She was mouthing the words and putting her hand to her eyes.   We are both extremely nearsighted and she chose me to try to get through to. Her best friend from high school,  J was there when I was visiting and she gave me her number.  I called J from the car and told her what I figured out.  J got very excited and was so happy I thought of it.  P also kept asking for a drink she cannot do that but they came and put a little water in her mouth to help.  Her lips were dry and they let me put some water based lubricant on them.  I told her she looked beautiful with her eyes open and she wrinkled her nose and shook her head no and made a face that she thought she stunk.  Which I thought was funny.  After a while she grew tired and she slept.

It was a good visit and I hope her glasses help her feel more in control.  I know if  I were that tied to a bed I would want my glasses so that I could see.  I find it very frustrating when I can’t see.  She gets so frustrated when she can’t get her ideas out.

It was a good visit and I look forward to seeing her progress next time.  She is so mad right now which means she has plenty of fight. Fight on, P.

I find myself missing the large Thanksgivings of my youth today.  I have memories of waking up early on Thanksgiving and rolling out pie crusts with my Mom.  she would always make pumpkin, banana creme, and lemon meringue pies.  My Dad and I would watch the New York  Macy’s Thanksgiving parade and all my sisters would be either home from college or home for a change. My sister K started college the year I started Kindergarten and I only remember her as an adult.  My Mom would cook a huge turkey and my grandmother’s sausage stuffing. I was always the only kid at these gatherings.  My cousins were all the same age or older than my sisters. I didn’t care.  They all took time with me, reading to me, playing with me, joking with me.  I never missed having other people my age around at these gatherings until I became a teenager.  As a little one the same age as my kids are now I remember these parties of going from one lap to another to one conversation to another.  It was joyous.

I really was looking forward to going to Long Island for the holiday.  I just talked to my Mom and my sister is having a rough day.  She is in pain from her tracheotomy yesterday.  My Mom seems so sad. I look forward to hugging them.  Tomorrow I am off to Long Island at 5am so that I can get back to Philly before dinnertime.

I want to end this with the obligatory thankful list.

1.  I am thankful that my kids even with their challenges are amazing human beings who I learn from daily.  I was lucky to get pregnant with them, at 37 and 39 without trying.  They keep me grounded like no one else can.

2.  I am thankful for my husband.  We had some serious marital issues this year but he is committed to me and our family.  We are sticking it out and it gets better everyday.  He has been incredibly supportive of me during my sisters illness. He has been my best friend for 18 years and I love him  more than I can say.

3.  I am thankful my sister is fighting so hard. Day 15 in the ICU. I hope she can mend her relationship with food and taking care of herself.

4.  I am so grateful for the internets. Some people I have known for 30 years and have reestablished relationships with.  My best friend from high school and her Dad have been in touch daily lately and their support during this time has been priceless. Other people I have never met in real life and their support has been just as important.

5.  I am so lucky for my husband to have a job in one of the only fields that is growing, medical IT.  I am grateful for my job and the fact that the recession has hit us but not as hard as it has for so many others. Our mortgage and bills are paid. We may struggle at times but it isn’t too bad.

I hope you and yours have a wonderful, safe, loving holiday.  *smootch*

I have been busy making side dishes for our Thanksgiving feast for four. I went out to lunch and drank two beers with my husband so I am ready for bed.

My sister had her respirator installed in her neck with a surgery called a tracheotomy.   She tolerated the surgery well and hopefull this will be a temporary installation.  I really can’t wait to get up there and see what the real deal is for myself.

I am tired from working till 3am and getting up at 7:30 am.  It’s that good feeling time of day.  The kids are clean and happily sleeping in their soft beds in cozy pajamas.  The lunches are made for tomorrow, the kitchen is cleaned up, and the dishwasher is making its watery washing noises.  Next I will fold laundry and fall into bed.  Such is the life of a former rock star Mom.

As I put Wildman to bed we talked about how many days till Thanksgiving. He also wanted to know about our plans for the holiday again.  As I tucked him in he asked me if I wanted to hear what he was thankful for.  Of course I said sure. He told me that he was grateful for me.  That made all the lack of glamor and glitz of my life post kids ok.  He is the best audience I ever played to.

The news from NY is more of the same. They were doing a lot of tests this afternoon and we should hear more by the morning. They are holding off doing her tracheotomy surgery to install the ventilator in her neck.  They want her to be more stable and they are hoping to wean her off the ventilator but so far all attempts have failed.  I hope she can breath on her own soon. Today is day 14 in the ICU.  It feels like forever.

We were supposed to go to NY for Thanksgiving. My sister K who lives nearby is taking her 20-something kids to Aruba and I was not wanting to go to my in-laws. We decided we would go make a memory for the boys in NY with my elderly parents. My parents are 83 and 76 but in good health but I know that most likely they will not see my boys graduate college. It is so important to me to make memories for them. In light of the events of the last few weeks Thanksgiving is canceled. My husband and I decided to forget trying to make plans and to stay home.  My boys and I have a tradition of hiking on Thanksgiving morning. This year we are going to bring my husband.  We are also going to let the boys watch Star Wars The Phantom Menace.  They have been begging to see a Star Wars movie so we are going to start there.

Today I went off in search of a smoked turkey.  My favorite Amish merchant at the Redding Terminal Market,  had no smoked turkeys and was considering not carrying them this year.  Tomorrow he will have 20 so  I will be getting up at 8am to get my lovely moist lovingly smoked local organic turkey.  It is the best best turkey ever. I am scouring the internet for recipes to make side dishes that are dairy, egg, peanut, beef, and pork free.

It should be fun.  We can make fun anywhere we go.  We are family, hear us laugh.

My sister is having a set back day.  She was not tolerating them taking her off the ventilator.  They want to do surgery to put the vent into her throat so that it is not in her mouth. It is a longer term way for them to ventilate her. She was more unstable today so she had another blood transfusion and electrolytes to help her be in a more stable place so that they can perform the tracheotomy and put a feeding tube more permanently into her stomach via surgery too.  I can’t wait to get there on Friday.

Tell me your favorite Thanksgiving traditons.

This afternoon my friend Cecily and I took our kids to our kick ass indoor pool.  It felt like a vacation.  My legs and body are tired but in a good way.  I love that we have active kids and they played so nicely together.  Little Boy A and Tori are 11 months apart and as they become preschoolers that time disappears and they play and fight so nicely. It is so special to me to share this with Cecily.  She has been in and out of my life since the early 90’s and I love to see us as parents.  We also ran into another friend at the pool who I remembered from the band scene and who Cecily also knew. It was like a big ol punk rock family reunion at the kick ass indoor pool in the ‘burbs.  We collectively had more tattoos than they have seen there in over a month.

They are starting to wean my sister off the ventillator!! I am overjoyed and cannot wait to see her on Friday.

This is to fill the space where real thoughts should reside.  I forgot my power cable to my laptop and I have less than 30 minutes of power left.

The update – her organs are in bad shape but she is more and more awake and starting to point at what she wants. My Mom says she even smiled around the ventilator at a funny joke today.  She is going to have a tracheotomy to put the ventilator in her throat on Monday.  That will get the tubes out of her mouth.  They have to drain her gall bladder because it is very infected.  They cannot remove it because she may not live through the surgery.  When they drain the gall bladder they are going to put a feeding tube directly into her stomach. This will make her more comfortable and she will be able to talk.  I guess they are seeing the need for long term ventilation and feecing which is scary.

I am running out of juice.  Thanks for sticking with me through this guys.

I was a real mess yesterday.  For the first time since Wildman was in the hospital I just plain felt bad, and wanted to hide under the covers and watch bad TV alone.  I was having a pity party for one. Those with responsibilities can understand that this was impossible.  This year has been full of drama, change, and hospitals starting with my husbands heart surgery in February. It was all starting to feel all too much.  With a very heavy heart I arrived at work.  Everyone of my regulars and co-workers were hugging me telling me they were sorry.  I was enjoying all the hugs but was unsure why they were all sorry.

Finally,  my bartending partner for the evening, F grabbed me by the arms and in a very serious tone told me that I should go home.  I looked at him with a what are you talking about look on my face and told him that I wanted to stay.  He was shocked and said but your sister died.  I replied, “WHAT!!?!?!?!  Can’t be, I was on the phone with my Mom as I walked in”.  I turned to all my co-workers and regulars who were so concerned for me, and told them that yes she was in very bad shape but she was fighting with all she had and was in fact, very alive.

Everyone wiped the worried looks off their faces.  It seems like the story of my sister dying was a miscommunication between my boss and the daytime bartender A.   I appreciated all the hugs but this event really shook me out of my funk and I had a great  night.

People always can tell you things can be worse but it is hard to fathom worse sometimes because it is all words. I felt and saw in my co-workers faces what worse could be last night and I am happy at where we are now. I was comforted that she was fighting and still very much alive.

The update today was more encouraging.  Her jaundice has lessened and she is becoming more and more awake.  They have had to sedate her because she was fighting the tubes in her mouth. They sedated her with morphine and my Mom says she is more awake but goofy.  My Mom and my sisters friend have been massaging her arms and moving her limbs for her.  This evening after such a session my sister raised her arm for the first time which is also good.  She is still on the ventilator and they are talking about putting in a tracheotomy so that the tube is not down her throat. They won’t perform this till Tuesday.  They are giving her some time to become more stable before performing surgery.  The doctors say she is still a very sick woman who is close to death.  My Mom sounded more upbeat.  I am bearing down for the marathon.

Today was Little Boy A’s Thanksgiving Pagent Feast at school.  It was so totally cute.  The preschool was so accommodating of Little Boy A’s allergies and they were just so cool about making sure he could be part of the party.  I was having a rough day but I wanted a little normal.

My mistake, I should of left my phone home.  During the party my Mom called. She had the laundry list of things that are failing on my sister and I popped.  For me the party was over and the rest of the day has been tough.  I can help Wildman with homework and my patience is short.  It has been nine long sleepless days.  As time goes on she has more and more chance of having a poor quality of life because of being still and on a respirator so long. They give her two more days on the respirator through her mouth.  After that they are going to give her the respirator through her throat.  It just is such a sad tragedy.  I guess I feel better when I go there. At least when I come I am there for her in some small way.  Here I am just here, feeding kids, going to work.  All I can do sometimes is think about how hard being trapped in a failing body must be.

I got up at the unholy hour of 4am this morning and extracted myself from bed.  My husband said murmuring that he missed me already and I was not even out the door. I took a shower, got dressed, and was driving in less than a half hour.  It amazes me how fast I can get out of the house when not accompanied by my appendages, opppss I mean kids.  I grabbed a couple of red bull shots at the 24 hour CVS and I had wings. I felt like a speed fueled truck driver. I drove in the dark and I was already in Brooklyn when my guys had to get up.  I luckily missed Philly, Northern Jersey, NYC, and Long Island rush hour traffic. It was still very early when I got to Long Island so I took the slightly longer route and drove on the Ocean Parkway.  The sun was bright and shining and it was a glorious day to drive on P’s favorite road.  I can remember her telling me she loved to take that route to work when she had her high-powered career.  It has a lovely ocean view as you drive and there is much less traffic than on the other parkways. In the sunshine today I had a huge epiphany.  Most American’s feel very nationalistic about the country of their ancestors birth.  Most of my ancestors, from the last 150 years were born in New York and Long Island.  Driving along the beach felt like coming home.  I felt safe and serene with the idea of Long Island in a way I have not felt since I was a child.

The drive ended with me seeing the hospital in the distance where P is, which is also the hospital where I was born.  The hospital is literally 100 feet from the bay. I was almost born in the ocean folks!  I got to the hospital very early and it was empty.  They let me in to see P even though it was not visiting hours because I drove so far.  Her husband S was there and I was so happy to see him.  I had a lot of hugs for him.  He had tears in his eyes.  P had for the first time in days opened her eyes and responded to him and the doctors.  She answered their questions by blinking her eyes because she has so many tubes down her throat.  After her husband left I sat and talked to P.  I told her about the Ocean Parkway, my red heads, kindergarten woes, Survivor (we are both fans), her son’s upcoming 18th birthday and all sorts of this and that. I did not realize that a nurse was in the room with another patient.  She was so kind and told me that if she was unresponsive she would want me to talk to her because instead of begging P to get well like most folks I informed her like I would in a telephone conversation.  She thought it was easier for a patient to hear about normal living than the pressure to get well.

The nurse I spoke with gave me some information on her condition and kicked me out.  They needed to get P ready to get some tests today.  She is jaundiced which means she has liver issues now. Up until this point they were unsure about P’s cognitive function but with her passing the cognitive tests her care is moving in a new direction. They were taking her to get a full CT scan of her abdomen and head to see what is actually going on. She has been having some internal bleeding.  They also were going to do a bone marrow biopsy today to see if her lymphoma has returned. When she opened her eyes and answered questions the doctors and nurses really snapped into action.

I was able to see P for another 5 minutes.  This time they had her on this machine that shook her bed trying to loosen up the mucous in her lungs.  the shaking of the bed had her stimulated.  I put my face right in hers knowing she is as blind as I am without glasses. I told her I was there, I loved her so much, and I was proud of how hard she was fighting.  She got tears in her eyes and she tried to speak.  We all told her not to talk but that we loved her and the doctors and nurses were trying to help her.

After the visit my elated parents and I went to a diner for a breakfast before I started the long ride back.  It felt like a turn in the right direction. After days of nothing but bad news this was energizing. I rode all the way home with wings that were more than Red Bull.

I arrived home and pulled into the parking lot of Little Boy A’s preschool 5 minutes before school let out.  Our friend Miss K was going to pick A up from school today. I waked into school hoping for a warm hug from my baby who seemed so far away today.  Instead, I got a full-out tantrum because he was not going to Miss K’s house.  Such is life.