SNOW DAY!!!!!

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.

Unveiling

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.

Sliding Back Into Normalcy

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.

Dad Working Saturday.

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.

Parenting Fail – No More Maimed Loved Ones

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.

Spontaneity

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.

Nablopomo no mo’

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.

Oh Yes!!

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.

Things to remember

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.

 

 

Hot toys?

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.