2012

Saturday, December 31, 2011

I know it seems that I must be eager to have 2011 over with.  2011 marks the very worst year of my life.  The first six months, however, were the very best of my life.  Sure, Maxie was born in 2010, but he went from infant to baby in 2011 and that was the best.  All of my most wonderful memories of Maxie happened in 2011 and now I have to say goodbye to him again.  My heart is so heavy today, heavier than most actually...and, it is always heavy.  Ted had to work today, as he does from time to time on Saturdays.  I am all alone.  I have spent most of the last 5 and a half months all alone.  When Ted used to work on weekends, I had Max.  We would go to Grandma or Grandpa's house for a visit, or we would stay around our neighborhood and go for walks.  Friends always comment in their emails to me how nice it must be for me to be surrounded by people who love me.  I am not sure where they get that picture, I know that there is love for us out there, but I am not surrounded by anything.  I have never been so sad and so alone in all of my life.  I am not sure if I am ready for 2012 but things just come, whether you are ready or not.  Whatever 2012 brings, it starts off pretty sad and lonely for me.  I am lucky to have my husband, I am lucky to have these two dogs that keep me company and snuggle me while I cry, I am lucky to have a roof over my head.  I'll focus on that for now.  Happy 2012 to you readers.  I hope that you have lots to celebrate.  Drink a toast to Maxie if you can.  See you next year.

Funny Faces

Friday, December 30, 2011








There is nothing that I love more than this boy!  Silly faces and all....  He was just perfect!

Tomorrow

Thursday, December 29, 2011

The day before Maxie stopped breathing I went to lunch with my old grad school internship supervisor.  He has remained a mentor and a friend to me through the years and we like to catch up every few months.  When I was the intern in his office, he used to talk about his children a lot.  He has three, Oren, the girl, and the baby....that is what he called them back then.  They have grown up a lot since we worked together ten years ago.  He asked me what it was like being a new mom and I told him it was the very best thing that ever happened to me.  Being Max's mommy was BY FAR the most wonderful and amazing thing that had ever happened to me...without a doubt.  He teased me a little bit, "Better than your internship with me?", he asked.  "Yep, even better than that."  Anyway, he told me that the kids had grown up so much that Oren, his oldest, was about to get his drivers license.  "Doesn't that scare you?", I asked.  Frankly, I was such a distracted teenage driver that it has always freaked me out that one day I would have a kid who would want to drive a car.  Actually, I have always thought that the drinking age should be lowered and the driving age should be raised.  I don't want my kid driving until he is at least 21.  But, of course, as a parent you need to let go and trust that things will be ok.  We talked about teenage drinking too.  I always thought I would be one of those parents that would say, "It is ok if you are going to drink," because let's face it...they are going to drink, "but please do it at home with me."  He got me thinking about the messages that sends to a teenager though - does that mean that you are condoning teenage drinking?  And, if they drink with you, aren't they going to go drink with their friends?  And get in cars?  Or overdo it?  Honestly, it was SO much to think about, it was making me stressed out and anxious.  "Thank god Maxie is only nine and a half months and I have years left to think about all of this stuff", I said.  Little did I know, Max would stop breathing the very next day.  I went home that night and hugged my little monkey tight.  I looked into his eyes and knew that he would make good decisions and be responsible.  I knew he would always be my baby no matter how big he got.  I was so grateful for his love.  As a parent, do you need to let go and trust that things will be ok?  If you don't, you are overprotective and your kids will be resentful.  Left up to their own decision making, all hell could break loose.  But, never, in one million years, would I have thought that I needed to worry about it then.  I feel guilty and sick that Max was at daycare while I was at lunch.  Was it even realistic to think I could have been with him every minute of every day?  I know my future children are doomed to have a hovering mom.  There is no way around it though I will do my best because I want my children to experience life.  But, that is just it!  I want them to live!  People express their worry for Ted and I.  We will some day see light again.  We will be happy again.  We will have more children. My thoughts are almost completely centered on Max and what he didn't get.  I sent him to daycare so I could go to work and I really trusted that he was doing well and would be ok.  Now I would sell my soul to go back in time and make different decisions.  I only care about what Max won't have.  He won't get to grow up.  He won't get to be rebellious.  He won't go to sleepaway camp.  He won't ever fall in love.  He won't drink or drive or get to show me how good and responsible he is.  He got nine and a half months and that was it.  My child.  It still doesn't seem real.  What's my point?  I don't know.  I guess I wouldn't say the point is to worry extra hard because something terrible might happen....though, when I look back, I am embarrassed and horrified that I thought sending him to daycare while I went to work was what was best for my baby and my family.  I guess my point is just to cherish every minute (and frankly, sometimes it makes me MAD that my loss should be something that just helps others to realize how good they have it).  However cliche it may sound, we really don't know what tomorrow will bring.

Details

Wednesday, December 28, 2011

I miss Max SO much.  Yesterday my heart stopped when I forgot for a minute where his teeth were exactly.  Were his two teeth on top or on the bottom?  I could hardly catch my breath.  How could I forget my munchkin's teeth?  Bottom!  Thank god!  What else have I forgotten?  The sound of his laughter.  When I hear another child laughing I think, is that what his laugh sounded like?  I can't remember exactly.  I think I have it but I am not sure....the cadence, the pitch, it only exists in my mind.  Hearing a child laugh actually causes me physical pain.  I should start carrying earplugs because it hurts so much.  Oh, I miss him so much.  I never, ever knew life could hurt this much.  I miss you Maxie SOOOOOO much!  I am not myself without you!  Why did you leave me Maxie?  I can't believe that there is no salve for this pain.  I just have to feel it...all of the time.  The details are becoming fuzzier but the pain is just as deep.


Teddy's Birthday 12.27

Sunday, December 25, 2011

Happy Birthday to my life's partner.  You are the most important piece of my life.  I am grateful to be walking this road with you...even if I am devastated that we have to walk it at all.  I love you with everything that I am and I know your little boy feels exactly the same.  You are a wonderful friend and the very best husband and daddy I know.













A Christmas Rant

I think we can all agree that December is all about Christmas.  Christmas basically OWNS December.  Another reason to not leave my house this month - Christmas music everywhere.  And, yes, I know, Jews have Hanukkah and there are other seasonal holidays as well....but, let's be frank...it's all about Christmas.  And that is fine.  Really, it is.  And, the reason it is most fine is because on Christmas day, Jews own the movie theaters....or at least, we used to.  Now, can someone tell me what the hell happened?  When this cataclysmic shift took place?  When did Christians (and other Christmas celebrators) start going to the movies on Christmas day?  Can't you guys stay home and open presents and drink egg nog and revel in how happy you are with your families and with apple cider and Christmas carols and all that?  It isn't that I don't want to be at the theater with you specifically, it's just that it was so much better when the theater was empty on Christmas day....and while I am at it, and I know I shouldn't complain, but when did the public schools start giving days off for Jewish High Holidays?  Those were the days that we got pulled out of school and it was cool.  It made us special for a day or two.  Rosh Hashana used to be my day to rock Disneyland.  Working in the Jewish community, I always get the days off work and the place used to be MINE (Second day of Rosh, of course...I am not THAT sacrilegious).  Ted and I went a few years ago (told our parents we were going to Temple....we just didn't mention that we meant we were going to ride Indiana Jones and the TEMPLE of Doom) and ended up in the longest lines EVER.  I am not down with these changes.  Very little brings me any joy these days....VERY LITTLE.  An empty theater would have brought us some joy but instead, I spent the whole of Mission Impossible battling my neighbor for the arm rest.  Shouldn't he have been at home building a gingerbread house or something?  What is next?  Are we going to have to get the early bird special at the Chinese restaurant just to get a seat next Christmas Eve?

End of Days

While people all over the world went to sleep last night with the anticipation of today's joy, I went to bed last night (as I do all nights) dreading the morning.  The morning is such hell for me that I try to stall out the night as much as possible.  That doesn't mean I stay up late, because we don't.  Grief is exhausting and we spend all night looking at the clock wondering how it is only 8:30 or 9 pm.  But, once we lay down, I try to keep up some conversation or watch tv in bed because I do not want to go to sleep....because going to sleep means eventually having to wake up...and waking up means waking up to this nightmare AGAIN.  Can I just say how FORTUNATE I feel today that I do not celebrate Christmas?  Last year Ted's cousins and their children were in town for Christmas (they do celebrate it) and they came over to see Max.  They looked so cute in their PJs, which they stay in all day as a treat on this holiday. Anyway, they were having a hard time wrapping their brains around the idea that the day that was most special for them was only Saturday for us.  Well, I am "thrilled" that today is just Sunday.  The pain of Halloween and Thanksgiving was brutal....Christmas must nearly kill bereaved parents.  Just knowing that today is a day that all of Max's daycare friends are sitting around trees and opening presents and getting kisses and love from their mommies and daddies makes my head spin.  How is the world so backwards now that everything that made us happy before makes us extra sad now?  This week has been special because it has been the Apocalypse week on the H2 channel.  Instead of watching "A Christmas Story" 5 times like most years, I watched a special on Nostradamus predicting the end of the world at least that many times.  If the end of the world is coming, I wish it would just come already.  Gather the exiles in ... I am ready for this thing!  Oh, wait.  I am one of those exiles.  Well, instead of the apocalypse...maybe the BIG Los Angeles earthquake.  I have been preparing for it for my whole life (I was in Israel during the 94 Northridge quake)....let's get this thing rolling!  It's fairly selfish, I know, that I am looking forward to 12.21.12 and the end of days.  That which scared me before seems like child's play (no pun intended) now.  If you are worried that my negative thinking will cause the planet some harm...like "The Secret" in reverse...don't worry.  Haven't I told you that I repeated a mantra for Max's well being for my whole pregnancy with him and his whole 9 and a half months?  I literally drove to and from work every single day and repeated, "A healthy and happy baby with a long, long life."  Over and over and over.  God doesn't listen to me so you are safe from my wrath.  I should probably have issued a warning at the top of this post....."May Spoil Christmas Cheer".  Sorry.  You probably could have guessed it anyway.

Incomplete

Saturday, December 24, 2011


This photo was taken when Max was just a few days old.  What you probably see is a giant pacifier.  What I see if perfect little fingers, with perfect little fingernails, alert eyes, chubby cheeks, a perfect little nose.  My life is so incomplete without this perfect little person.  I am as sad for him as I am for me....or more.  He doesn't get a life - perfect or imperfect.  He had such a short time on this earth.  He'll never know how much his Daddy and I truly loved him.  He'll never know his younger brothers or sisters.  He'll never get to play with his dogs.  I feel like half a person.  I barely recognize myself without this little man.  My life will always be incomplete without him.

Faith vs. Beliefs

Friday, December 23, 2011

When I was a child, I was obsessed with the stars.  I loved the exercise of charting the constellations.  I would sit in our backyard and stare up at the sky and think about how each of those stars was its own sun and perhaps each one was the center of its own solar system and perhaps there were planets rotating, just like ours, around several of those suns, and MAYBE just MAYBE, there was a little girl on one of those planets charting constellations from a different view.  Maybe our sun was the North Star from where she sat.  It seemed to me that with an infinite number of stars and planets that stretched out for eternity, there must be another star somewhere that had planets rotating at the exact perfect distance to have the exact perfect atmosphere to support life someplace else.  I have thought that always.  On my college senior year houseboat trip on Lake Mead, I was convinced that if I just looked long enough at the sky, eventually I would see something.  I sat on the back of the boat with five or so friends staring at the perfectly clear night waiting for our UFO sighting.  It's possible that we smoked some pot that night.  By the way, my dad recently told me that he feels the exact opposite.  That with so many stars and planets, he feels there is no way possible that life could exist the way it does here.  It's statistics, right?  The exact perfect conditions for something so unlikely to occur....but it does anyway. Like life on earth....like SIDS.  But, really, I meant to write more about the unknown (because you know I love the unknown).  You may think this is something new - my interest in the unknown. It is not.  As obsessed as I was with stars as a child, I was ten times more obsessed with the Loch Ness monster.  Perhaps one of my parents could explain to you how I even knew what it was.  I had National Geographic clippings of fuzzy Loch Ness photos covering the walls of my "playroom".  I was sure he existed.  So what if nobody had found him yet?  Didn't scientists continue to have new species of animals all of the time?  There had to be a reason that people keep seeing him.  It still drives me crazy that he has not yet been found.  In college I befriended a guy who I haven't seen since, who knows that when he was a kid, he saw Bigfoot.  He was camping with his family and I don't remember the story exactly, but I think he went to take a pee in the woods and he saw Bigfoot.  This friend was no Pitzer pothead either, he went to Pomona on a scholarship (sorry Pitzer friends, but you know outsiders are more impressed by our neighbors).  I never knew his story until I ran into him one night at the Marlin Club - a dive bar on Catalina Island - while I was there one summer with my family.  He was working that summer for a scientist on the island, studying Bigfoot material or legends or sightings or something (I don't actually remember so well....did I mention that I ran into him at this dive bar?)  Anyway, the point is that he was smart and successful and believed in a creature that was considered laughable to most people.  Since Max died, my brain keeps wandering back to the places where I get to see him again (Max, not Carlos the Bigfoot hunter).  Will I see him in dreams?  Will he continue to speak to me through a medium?  Will I "get" to have a Near Death Experience and reunite with him only to have him tell me that it is not my time yet and then return me to my body?  Will I learn to communicate with him myself?  Am I crazy?  Yes.  I don't want to wait until I die to find out if I get to be with Max again.  And, if I die and nothing happens then I am just dead.  Ted says I should just BELIEVE that we will be reunited again.  I guess then if I die and nothing happens, I will be dead and therefore, not disappointed.  I wish it were good enough for me.  I have faith but I am not sure that I believe.  Does that make sense?  For some reason, I still BELIEVE that if the universe stretches on for eternity that somewhere there has to be another intelligent life form.  In fact, there is no doubt in my mind.  It annoys me actually that I believe in that though, because I don't care about that.  I want to believe in Max.  I guess I would not spend so much time thinking about how to memorialize him appropriately if I didn't believe that he could see.  I must believe that he knows we are doing everything for him.  He must know how much we love him.  I have enough faith to keep me going minute by minute but I am looking for the belief that is going to last me through this lifetime.  Can anyone help me out?  Seriously?  What do you believe?

He Will Not Be Forgotten

Thursday, December 22, 2011

As long as I continue to live on this earth, Max will not be forgotten.  His name, Maxwell "Maxie" Judah Leviss, will long outlive mine - as it should.  There will be forests and scholarships and research funds named after him.  The story of his brief life will be told always.  Not a day will pass that I will not tell his story in some way or another to someone else.  He may not be here physically but he LIVES in my heart.  And, when I go, I will make sure that he does not.  I will not let it happen.  He will never really die because I refuse to let him.  And, so even when this life is just too hard to live, I have to keep on living it to make SURE that he has the chance.  I must go on mothering my baby, as so many bereaved parents have so beautifully put it, even though I cannot hold him, and bathe him, and kiss him and tuck him into bed.  I have to keep mothering his spirit because without him, I am nothing.  Max will go on living any way that I can find to make sure that he does.  This is my purpose now.  This is the only thing that matters.  Link to NY Times Magazine Blurb about Maxie.

Transformation

Wednesday, December 21, 2011

I have not yet found my new normal.  I think it is a process that will take several years.  Our grief counselor told us earlier this week that we have begun a period of deep transformation.  I told her I don't want to transform.  She says we have no choice.  And that is the part that blows my mind.  I have had no choice in any of this!  Now, over the next months and years, I have to make a choice about how I continue to walk through the world.  Do I walk through this world with resentment or do I walk through knowing that even though life will never be as good, it can still maybe be a different good again one day?  Frankly, I resent that I have to make the choice about how to handle my grief at all.  Did I make the choice to be this woman?  Did I have the choice to take on this grief to begin with?  Did I do something to hurt someone?  Have I wronged the world somehow?  Did I deserve this somehow?  What did I do to deserve having to be in the position of deciding how to recreate my entire life and personality after the death of my child?  Did my child deserve this?  Of course not...this new life was just handed to us, in broken pieces, with no instructions, and just the understanding that we have to make sense of the whole thing.  This is a burden.  Everything is a burden - having to be sensitive to others who don't know what to say is a burden.  Having to keep myself from jumping down the throat of someone who says or does something hurtful is a burden (especially when you keep doing it over and over again).  Sometimes I do not restrain myself...something I hope to correct....one of the reasons you don't see me anymore.  Still, I think the very few of you who continue to be so insensitive should think twice....this could be you some day.  Those of you who have been so kind, bringing us dinners, sending us cards and other gifts to let us know you are thinking about us, sending emails and texts - you impress me every day.  And, those really special individuals who can actually connect with us must already be deeply transformed people.  I am in awe of you.  I hate having to keep going through the motions, knowing that we are the unlucky ones who don't get to dream like we used to.  I am reading Elizabeth Edwards book "Resilience"....I guess people bought it hoping to read more about the salacious affair of her husband only to be disappointed in realizing that the book was much more about the death of her 16 year old son Wade.  She talks about having to keep recreating her reality after every blow.  Each time knowing life would never be as sweet but still creating a new paradigm from which to live her life - death of a child, terminal cancer, infidelity.  She didn't ask for any of these things, they just kept getting handed to her.  Again, you can play by the rules perfectly and it won't matter in the end at all.  You either get handed the fortune or the misfortune.  So now comes the part of this journey that I am dreading the most (next to actually losing Max).  Now comes the part where I have to decide who I want to be when I grow up (since it looks like I eventually have to).  It's not going to happen overnight, just as I didn't become the person I was overnight either....it took 37 years in fact.  So, bear with me and try to be sensitive to both of us  We lost the most important person in the world to us.  Please keep that at least in the back of your mind when you interact with us because, trust me, it is at the very front of ours.  Eventually, I hope to come to the point where I realize that though I may have been on a transformational journey, you haven't been, and I'll have to be ok with that too.

The children

Tuesday, December 20, 2011

One of the many reasons that it was so easy to fall in love with Ted was his ability to connect to children.  Ted is so good with kids.  He loves them and they love him.  My favorite memories of Ted are of him being followed around like a Pied Piper by his many little adoring cousins and always by my niece Mandy.  At one Frasier Family Reunion (Ted's mom's family), the cousins literally lined up to take turns having Teddy throw them up into the air one after the other while they giggled and giggled.  We both love children.  We love meeting our friends new children, we love playing with them, we loved talking about the children we would one day have.  I loved studying all of the kids at Max's daycare.  They were all so cute.  All with such different personalities.  All with such different relationships to my Max.  One of the many things that has happened since Max died that makes everything so extra sad is that we can hardly even look at children anymore.  It literally pains us to be too close to children, playing with their siblings, cuddling with their parents, it physically hurts both of us.  When I see and talk to my friends these days, I don't even ask about their kids.....their kids that I love.  I don't even ask about them.  I can't see them, even in pictures.  I hardly check Facebook, but when I do, I make sure to check from my iphone because then the application won't open to the newsfeed.  If I see the newsfeed, I might see my friends children, I might spot photos of a birthday party, or an especially fun day in the park, I might see birth announcements or sleepover parties.  My heart breaks and I feel so selfish.  I love these kids and I can't even think about them without feeling my heart break.  The worst of all are the kids that were born around the time Max was...even those that are a little older and younger.  Friends I shared pregnancy with, who I shared the first months of Maxie's life with, who I assumed I would spend the whole of Max's growing up making play dates and sharing advice with....I can't see them.  I can't avoid them forever either and I don't know what to do.  I am ashamed.  I don't know how to fix the situation but since I am not seeing any children now, I don't have to worry about it just yet.  But, eventually, I will have to see Maxie's peers.  The thought scares me to death.  If I were someone else judging me, I would think, "Get over it.  People have kids and their kids are wonderful" but, this is ME judging me and all I do all day is judge myself and my biggest challenge every single day is trying to find enough compassion for myself to keep going through another day without Max.  For now, seeing stranger's kids is hard enough...to be honest, even being with my nieces has been hard, especially because they loved Max so much.  I am just doing the best I can do and I know it isn't good enough.  It makes me sad how much everything has changed.  How SO many of the things that used to bring us joy now bring us pain.  Even the best things on earth - little babies and children.  Who would have ever thought?

Five Months without my baby

Monday, December 19, 2011

It has been five months since the last time my baby smiled at me.  Since the last time I buckled him into his carseat.  It has been five months since the last time I dropped my happy baby at daycare.  Why did I drop him there that day?  Why did I go for a bike ride?  Why did I have a lunch meeting planned?  I want to die.  This is so hard.  I miss him so much and what a stupid word.  I long for him.  I can't live without him.  This is too much to bear.  Why did this happen to me?  To Max?  To Teddy?  To us?  I am going crazy and I can't hardly contain it.  I don't recognize the moans coming from my throat because they aren't even human.  Oh GOD!  Why?  Why does Max not have a life with his mommy and daddy?  We love him so much!  What will the rest of my life be without him?  I can't concentrate on one minute at a time!  I want to be looking forward to the future of my one and only!  I am so sad.  I am not sure how much longer I can take this.  I would give everything I have for one more chance to nuzzle his soft cheeks, to play with the small lock of hairs on the back of his head, to sit him in my lap and put my arms around him.  Anything I have!  I can't believe I have to wait a whole lifetime before I get to be with him again....whether that is one week or fifty years - it is TOO long!  I am going crazy.

Little Boys

Sunday, December 18, 2011

Babies and little kids break my heart but little boys hurt me ten times more than little girls.  Little boys cuddling with their mommies.  Grasping onto her shoulders, sitting in her lap, grabbing onto each others faces and giving big kisses.  That should be us.  That should be Maxie and I.  I was so happy to be the momma to a little boy.  Little boys seemed less complicated to me, easier to maintain my relationship to through the years.  Plus, my little boy ...oh!  There are no words.  His smile melted my insides.  His little dimple made me crazy.  I could kiss his cheeks all day and night.  When I see a mommy loving on her little boy, my insides turn outside in.  Why not me?  Why don't I get to be with my little boy?  To all of you mommies with little boys, make sure to cuddle them an extra bit for me but don't tell me about it.  I can't think about it because it hurts too much.  It makes me much too jealous.  But, please mommas....love your boys.  They are such a blessing.

Nonsense

Saturday, December 17, 2011

Sometimes I want to join a cult.  Maybe not the kind where we wear matching tennis shoes and drink kool aid...more the kind where we just blindly follow some guru and that takes up the whole day and then we do it again the next day.  I want to be part of something where I can forget who I was.  I want to forget the happy me, the me who had a little boy, the me whose life was torn to shreds, the me who thought anything was possible.  I want to just eat weird foods and stop texting and sing songs I've never heard and maybe do this with a bunch of other people whose lives have also been torn to pieces.  I hate being in the normal world, where people are worried that they might be late to their waxing appointment, or they stay up all night stressing out about yoga poses, or feel hurt because their neighbors forgot their birthday, or they care too much what their partners watch on television.  The normal world seems like complete nonsense to me....so nonsensical in fact that it makes me want to jump feet first into the nonsense world.  I can't find a nonsense world that makes enough sense to me though...does that make sense?  Nothing is weird or out there enough for me.  There is nothing that can help me to understand why my little peanut's life had to end.  There is nothing to help me make sense of all of this nonsense.  And I am searching!  Believe me!  Ted and I are constantly rewriting our plans to run away.  The current plans include running a bed and breakfast in Costa Rica.  Ted picks people up at the airport and bartends.  I am the bookkeeper.  Where is the nonsense in that plan though?  How can I live in paradise when my insides are being torn out of my body with every breath I take?  Seems like most of the people I encounter who are as lost as me are just lost though.  They didn't suffer some tragic accident.  They didn't lose their most beloved.  They are just confused and searching for meaning.  I don't relate to them either sadly. I'm mostly thinking, "Why are you so confused?  Just get on with it already".  I'm not incredibly compassionate these days.  I'm not really going anywhere with all of this.  Just expressing how I feel today (and most days).  Lost, confused, heartbroken, alone, restless, sad, sick, dismayed, distraught, distrustful.  

Goodnight Moon

Friday, December 16, 2011


I read Goodnight Moon SO often to Max, I memorized it.  He loved this book.  Good thing - because we had three copies.  Two cardboard versions (one at our house and one at Grandma Susanna's) and a big regular book version.  What is it exactly about this book?  He would see the cover and smile and then really quiet down and get a little subdued and sleepy.  I read it in almost a whisper.  At the end I always added, "And, Goodnight Maxie".  I have been thinking about Goodnight Moon a lot because Moriah the Medium told me that Maxie misses my reading it to him.  I miss reading it to him also....and just plain reciting it.  When we were on our plane ride home from the East Coast in June, Max was so over tired.  I just leaned over and put my mouth right next to his little ear and whispered the words to his favorite book: "In the great green room, there was a telephone and a red balloon, and a picture of the cow jumping over the moon...".  He looked at me with the funniest smile, like, "Mom!  The book isn't even here!".  But, he calmed right down.  He relaxed as soon as he started to hear the words.  We put a copy in his little coffin with him and I have brought it and read it to him several times while visiting him at the cemetery.  Does he hear me?  Does he know how much I want to lean over his shoulder and whisper the words in his tiny perfect ear?  Does he miss me?  Does he miss my reading to him?  I miss him so much I can barely stand it.  I miss my little Maxie - moon.

Deep

Thursday, December 15, 2011

When Ted got home from work yesterday, I was on the couch watching "Steel Magnolias".  Remember that one?  Julia Roberts is the daughter of Sally Field and at the end of the movie she dies.  Her family has to make the decision to take her off life support when it becomes clear that she isn't going to make it.  This is, of course, what happened with Max.  Ted and I and our parents sat in a room and decided at what time we would disconnect Max from the machine that kept him breathing.  We had to sign papers, everyone said their goodbyes at the designated time and then Ted and I were left in the room with our rabbi for our last moments with our son.  I go over these moments in my head nearly every day.  Watching my child take his last breath is something that will be with me until I take mine.  Just as Ted was pulling up to the house, came the part of the movie I was waiting for ....where Sally Field melts down after the funeral.  Her well meaning friends come over to her to tell her how lovely she looks and how beautiful the flowers and the service were and one friend pontificates about how nice it is that her daughter is now with Jesus.  This is sort of the famous scene, where Sally Field yells that she wants her daughter back.  Why did it have to happen to her?  And, how ANGRY she is....so angry she wants to hit someone so that they can know the pain that she is in.  In real life, this rant would be repeated on a daily basis for many months and possibly years to come.  I DO wish that someone knew and felt my pain.  I don't wish it on anyone specific but I wish it....and that probably makes me a terrible person and I am not sure I give a rat's ass.  Especially because I am fairly sure that nobody that I know does or will feel this pain.  Lucky me .... it is uniquely mine!
Anyway, as Ted approached the house, I quickly changed the channel.  I didn't want him to say, "Do you really think you should be watching this?"  I didn't choose a new program.  It chose us.  It was one of those countdown clip programs with the comedians in between.  It was called something like, "America's top 10 most hated people" or something.  Ok - so here is my problem (one of MANY) with the society that we live in.  It is pretty much summed up in this program.  The list was made up of individuals like Howard Stern, Levi  Johnston and Paris Hilton.  But, OJ Simpson was number 4.  Number 4?  A man that most people believe committed a double homicide was number 4?  Ted and I were appalled.  Who could possibly be on the list in a more hated position?  Spencer Pratt...number 2.  This tool from a reality show that probably less than 2 percent of the population watches BEAT OJ Simpson?  A man who murdered the mother of his children?  Number 1 was Casey Anthony.  But, like, what kind of a world do we live in where murderers appear on the same list as a comedian (Stern) that is sort of controversial (frankly, I find Howard Stern to be a complete narcissist but is that as hateable as being a murderer?)  Do we have such little regard for human life that a murderer would not be in a category of their own?  I could see Anthony and Simpson being on the same list for "Top Ten most hated murderers", but this was like a list of "celebrities".  Which brings me to the next issue - why do we make celebrities out of murderers (Anthony)?  Maybe I am being inarticulate here but is seems like human life is just one more commodity to sell on television.  While I was pregnant with Max, I was addicted to those True Crime shows.  The ones where the same guy is the narrator about the horrific stories of spouses chopping each other into small pieces after finding out about affairs and other such jealous nonsense.  I stopped watching them when Max was born because frankly, they scared me...but also because human life is sacred.  I am not sure that the demise of human life should be the stuff that we make cheesy generic television shows about.  Regardless, it is almost no wonder that the common response to the death of a baby is "Get back out there!  Put one foot in front of the other!  When are you going to get over this?"  Death is just something we watch on TV.  It isn't something we get close to.  It is something that we hope goes away after the funeral.  Sally Field makes her big speech, screams at god, "Why have you done this to me", and then her friend makes a silly joke and the rant is over.  The rant is over because that is all we can take.  And if Sally Field was to continue her rant, believe me, one of those friends would think, "why is she yelling at me?"  Our anger is something that others like to take personally.....as if it has anything to do with anything other than the pain and misery of our own loss.  We are a somewhat self centered society and we are all screwed up in how to dole out attention.  A woman is suspected of killing her two year old and then shows up on a reality top ten show.  Barely a thought given to the little girl whose light was extinguished from this earth.  I know - I am too much.  It's just that I am often thinking that while well meaning folks who love us are sort of hoping we get better and that this all kind of "goes away", there is this beautiful soul who is no longer here.  Whose life had so much meaning and importance and now he is gone.  And, my anger will not subside because someone made a funny.  My anger is real and profound and it goes deep.  It goes DEEP....Deep - a place where very few are willing to go.

PS - I wasn't being sarcastic yesterday when I said I appreciated nice emails from friends who thought that I was feeling better.  I really did appreciate them.  I just wanted to explain how complex grief was...I only wish it were that easy.

At least

Wednesday, December 14, 2011

I have received a lot of really nice emails in the past week from people saying that they are so glad that I am feeling better.  The emails are really sweet and it warms my heart that people are following my moods so carefully and that they actually care.  But, here is the thing about this blog - on the one hand, I think it gives a view into how I am doing, so people don't have to worry so much (though if I don't post by 10 am each day, some people think I am dead).  On the other hand, even my nearest and dearest seem to think that if I write something dark, I am suicidal but if I write something lighter, I am much better.   The complexity of grief is difficult to explain but, I am not better.  I didn't get out of bed all day yesterday.  My brain was flashing images of a beautiful baby Maxie, wrapped in a towel, on his changing table, with a big smile....and all day I was thinking - I will never get to love this baby again.  It is sickening and the burden of knowing that this pain will be here for the rest of my life is so overwhelming, I become paralyzed.  Yes, I have found that swimming calms my mind and I do have two wonderful therapists that help me to "normalize" my loss...but I am still a mom, living in a house without her baby.  I am still a woman who wanted a child always, who had a baby at 36 years old, whose baby made her feel like life was finally complete, who loved her baby with her whole heart and soul, whose baby got dropped off at daycare one day and never came home.  I am angry and so jealous and my heart is so broken and while in some ways I have accepted that he is gone, there are others ways that this has become so much harder.  In addition to losing Max, there are added complexities that I understand most people in my situation go through: I have had to reevaluate friendships, I am not capable of doing the job that I worked so hard for, I have learned how alone I really am even though I have always been surrounded by people, I have had to question not only my faith but faith in general (I have never been particularly religious but always thought there was something bigger than me), I have had to figure out how to get from one minute to the next without losing my mind.  Yesterday, I came close to losing it.  Finally falling asleep last night was such a relief.  "I feel better" today and yet, I still don't know exactly how I will get myself out of this bed.  Here is a dose of truth - sometimes I purposely write a little lighter because I don't want you to know how dark it is in here.  Sometimes I try to focus on the positives because I feel like it is a first step in healing.  My grief therapist says it is important to "act as if".....  Act as if my whole world didn't crumble in on me I guess.  I am aching for my baby.  I want him more than I want anything.  I loved him so completely that having to live a life without him is mostly unbearable.  Death is so final.  And, I know it's inappropriate in some ways to say this but I think all of the time - If I had a disease, AT LEAST there is hope that I would be cured.  If I were living on the streets, AT LEAST there is hope that I would find a way off of them.  If I was a drug addict, AT LEAST there is hope that I could get into a 12 step program.  If I was divorced, AT LEAST there is hope that I would learn to love again.  If I was unemployed, AT LEAST there is hope that I would find a new job.  There is no hope for my situation to be corrected.  Friends and family think that the answer is that there will be more babies!  And, yes, that is something to look forward to for sure!  But, no new baby will be Max.  There is no AT LEAST here.  Knowing that the rest of my life will have no AT LEAST makes every day nearly impossible.  So, sorry to burst your bubble.  I think it is pretty safe to assume that I am not going to "get better" real soon.

Watching Tube

Tuesday, December 13, 2011

Maxie didn't watch television at our house - not Baby Einstein, or cartoons, or whatever else people put on the TV for babies to watch.  I knew he would have the rest of his life to be glued to a television (like Ted and I are).  The baby years are for development and bonding not cartoons.  Anyway, that is what grandma's house is for....right?  My mom, Grandma Susanna, took LOTS of photos of Maxie one morning in her bed after a sleep over, his eyes glued to the television set.  What a nice relaxing morning to stay in PJs (still in his sleep sack actually) and watch the tube.





He is zoned out man!

Auntie Al

Monday, December 12, 2011

My mom's sister, Auntie Alison, came to visit us this past weekend from Portland.  She has always been special to me.  She was a teenager when I was born and she has always been pretty, funny and a good friend.  It helps that she is mommy to my cousins Nate and Lizzy, both of whom I was obsessed with growing up because they were (and are) so darn cute.  She is a trailblazer in a more quiet and creative way than my mom and I.  She has been through a lot in this life of hers and some of it is too terrible to even contemplate.  She knows what it means to wake up with one life and then be handed a new, terrible and scary life that nobody in the world would trade with you.  And yet, she is sweet, loving and giving always.  I just wanted to say how much I appreciate her wisdom.  Her advice about how to cope, how to be gentle with myself and how to eventually forgive the people that we love.  She loved Maxie.  She was the first person that he really smiled at for a long period, gazing into her eyes and smiling bigger and bigger.  She sat with me and talked about about coping with PTSD, about people not being as loving and kind as they could be and in some cases being downright mean.  She talked to me about making the decision to live again without fear (as much as possible).  And, she talked to me about Max.  How cute and sweet and wonderful he was.  Auntie Alison is supportive and loving and curious.  She even called Moriah the Medium and had a reading (which, by the way, sounds like it was phenomenal) even though she considered herself to be kind of a skeptic.  Anyway, I was grateful to spend some time with her this weekend, even though it wasn't enough.  I look forward to seeing her again in Arizona in April!  I love you so much Al!  Thank you for being here for all of us.

Thank goodness...

Sunday, December 11, 2011

Thank goodness for .....
$25 foot massages
Hot Chocolate
Wonderful, caring friends
Sleep
Good books
Parks and Recreation, Glee, The Office, and Modern Family
Other parents who have lost children: their support, their blogs, their journals and their constant reassurance that everything I feel is normal
Korean spas
Pictures and video clips of my Maxie
My family
Central heat
A big fireplace in our bedroom
Maxie's Forest and Team Maxie
The meal train
drugstore.com
fuzzy slippers
Mediums, Accounts of Near Death Experiences, and stories of life after death
swimming
sweatpants
kundalini yoga
Max's dirty clothes
dreams of future Leviss babies
and most of all ......Teddy
These are the things that have helped me get this far....

Progress?

Saturday, December 10, 2011

We are coming up on the five month mark since our little Maxie left this world.  I feel there has been a change in my grief but I am not sure that I would call it progress.  I stopped wishing I was dead a few weeks ago.  I know that is dark but it is how I felt.  Again, wishing I was dead is not the same as wanting to kill myself.  There are those of you who will never understand that and I am just going to have to be ok with that.  For those of you who care to listen though, trust me when I tell you, it isn't the same. I am not sure when the change took place or why.  I think it might have something to do with having a new therapist.  Ted and I are still visited weekly by our grief counselor (who we both adore) but she recommended that I also see someone else.  The woman she recommended is anything but traditional.  She is a licensed marriage and family therapist and also a kundalini yoga instructor.  If you know nothing about kundalini yoga, know that a lot of the practice is based in chanting and quieting the mind.  She works with a great blend of practical, spiritual and straightforward talk therapy.  Also, and I am sure this is the biggest part, she lost her own babies over 20 years ago.  The experience was different.  She had twins.  One died at birth, one died several days later.  It took her a long time to work through the complex grief and she is able to share what helped her during that incredibly dark period of her life as well as to recognize all of the feelings that I have with losing Max.  Our experiences are incredibly different but having to walk through our days, having to interact with some people who refuse to be gentle and kind, having to sometimes pretend to be normal, (and the list goes on and on) are all things that we have in common.  Her advice is sometimes funny to me but very practical.  Like, she recommends that I go shopping and get a few "cute" blouses.  She wants me to put on makeup and perfume for my husband, exercise every day, and change out of my pajamas every day.  I can't say I am doing those things every day but I am working towards it.  She also sent me some chants to do - for fertility, to keep away evil thoughts and dreams...  She has her morning yoga classes meditate and chant for Ted and I, which I really like.  Once a week, I go to her class.  It is totally unlike any yoga I have done before and that is a really good thing.  It's like I have left the world of valley moms and lulu lemons pants and downward dogs and I am instead visiting another country where people dress differently (the studio has a large Sikh following and my therapist is also Sikh), talk about different things, and actually practice yoga in a completely different way.  I think I would have thought it was a little kooky before Max left us but it suits me now.  Anyway, I am grateful to have found both of these therapists.  They are teaching us how to live with all of this sorrow.  What is weird is that I still miss Max more and more every day.  The burden of living with this loss still feels so heavy.  But, I am getting to the place where I realize that I have to keep living without him.  The period of disbelief and trying to figure out how to change my reality has ended.  I believe he is gone now and I know that there is nothing I can do to change it.  The first 3-4 months of this awful journey was the darkest, most painful, most excruciating time of my life thus far.  There are no words to describe how terrible every minute was.  Maybe you can understand why I didn't accept your offer to get coffee, or do lunch or have you come sit with me.  I hope that you can.  I would not have been able to make conversation with you but would have, at the same time, been completely reliant on you to make the conversation.  At Max's funeral, the rabbi suggested that perhaps we would just want company to sit with us quietly and maybe that is comforting to some.  When people came and just sat here quietly while I cried, it made me feel SO alone.  I preferred to be alone (mostly still do) but wanted to talk to the occasional visitor who came over.  I just didn't know what I wanted to say and I hoped that they could actually ask about me and then listen to what I was saying instead of leading the conversation into non-Max topics (even though I recognize that was much more comfortable).  I wanted people who I believed cared about the pain I was in and were willing to listen to me talk about that.  Knowing most people are not comfortable with hearing about pain and loss, I was careful about who I let in.  I think I am a little better at that now but I am still very fragile, very sad, incredibly disappointed by life, and wondering how to move forward.  I miss Maxie!  I miss him so much, he is still all I ever think about.  So, have I made progress?  I am not sure really.  Is there something I am progressing towards?  Again, don't really know.  But, I am feeling just a little less scared and just a little more like myself - a new me, but me nonetheless.

Lovey

Friday, December 9, 2011

Maxie slept with a monkey at our house and grandmas.  He had 4 of those "loveys" by angel dear.  You know, the ones with the animal heads and the blankie bodies?  I was told by several friends that they were breathable.  I was also told that they would be a comfort to him when he started sleeping alone in his crib in his own bedroom.  That happened when he was around 4 months old.  I wore the monkeys around in my bra for weeks so that they would smell like me to him.  Then, every night when we would lay him down to sleep, he would take the monkey and rub it on his little face.  Then, he would lie it over his face until he found the exact right place for it before passing out.  We all loved watching this little ritual on his baby video monitor.  It was so incredibly sweet.  Throughout the night, Max would travel up and down the crib, from one corner to the next, and the monkey always came with him.  He also liked to hold it in his car seat and in the stroller.  He would put it against his cheeks and tightly hold it in his tiny fists.  How I wish I had videoed the nighttime monkey ritual.  It was beyond the cutest thing ever.  I don't trust anything as breathable now.  Leviss rainbow babies can have loveys when they aren't sleeping but never, ever in the crib again.  He wasn't sleeping with his monkey when he stopped breathing at daycare, but still, I am not taking any chances at all.  It's sad, it brought Maxie so much comfort.  We actually buried him with one of the monkeys, knowing it would help him feel like we were close.  I hope it has given him some comfort.  His monkeys still give me just a little, but not nearly enough.

Another Life

Thursday, December 8, 2011

Sometimes the only way I can get through another hour of this life is to try to forget that I was ever a mother.  To try and remember who I was before I had Max.  To forget bath times and wet kisses and warm and cozy towels and cardboard books and soft liquidy foods.  To try and put goofy smiles, bright clear baby eyes, funny monkey outfits and tiny toes out of my mind.  Sometimes the best I can do is to try and shut off my brain and think of myself as an entirely different person.  A person who never wanted a family.  A person who worried that I would lose my freedom and stop having so much fun once children came along.  I have trouble holding the vibration of this person that I am not for much longer than half an hour or so and then when I accidentally let go, the truth comes crushing in on me even harder.  I remember that I wanted to have a family more than anything.  That I wanted children always.  It was never a question in my mind.  That I loved Max from the minute I knew he was going to exist.  That from the minute I saw him, my heart belonged to him.  When I think I can't get through even one more hour, I realize that I have to get through forever without him. The dull pain mostly resides in my chest, shoulders and throat.  It's so hard to take a breath.  I feel like I am going to collapse from the burden of this grief.  A lifetime without Max is far too impossible.  One more day without him makes my heart beat right out of my chest.  This punishment is too much for me to take.  I am ill-equipped for this much pain.  I always knew I wanted to be a mommy and it was SO much better than I ever even thought.  I knew I had an exceptionally easy baby and I felt blessed all of the time.  Plus, oh my gosh, he was so cute!  I want to kick myself every single day for not taking more pictures, not taking more videos.  So much is just in my head. There was an especially cute thing he did where he would look right in my eyes, very seriously, and then smile and start to move his little body and hands around...like he was trying to tell me something.  Then, he would pause and look back into my eyes, for recognition.  Why didn't I ever video that?  I can hardly explain it but it is so clear in my head and I worry that I will lose it.  I've lost him.  I've lost him forever.  This is so hard.

Happy Holidays

Wednesday, December 7, 2011

Dear Friends,
I know this time of year is very exciting - a time to count your blessings and shower your loved ones with attention....especially children.  Presents and television specials and so much music everywhere you go.  If I reminded you that Ted and I aren't Christian, would you maybe feel better about not sending us a Merry Christmas card?  I know that some of you probably took the address from Maxie's tree donation site and added it to your Holiday card spreadsheet.  Would it be too much trouble to go back in there and just "hide" us for this year?  I haven't even bothered to check when Hanukkah falls this year.  I don't even want to know.  Perhaps by next year maybe we will have something to be happy about?  I don't want to squash your enthusiasm because I know you got really cute sweaters for the little ones and you have already drafted numerous renditions of the family update letter, but maybe, just maybe, we can opt out for just this one year?  I KNOW we will never have a holiday season this terrible again.  I just know it.  I am just thinking since Halloween nearly drove me to start using hard drugs, perhaps daily influxes of adorable happy family photos and cards would produce the same sorrow and anxiety.  And, trust me, I think your family is so cute!  Really.  Usually I just love the updates about everyones school plays and soccer leagues too.  But, I am trying to be proactive here and just thinking of anything I can possibly do to try and lessen our pain just a little.  Anyway, if you can't figure out how to not send us a card, we will live (obviously) and no hard feelings.  But, if you can figure it out and are feeling particularly compassionate this holiday season, we'll take a rain check.  With lots and lots of love,
Ted, Abby, and Baby Maxie

Feeding himself

Tuesday, December 6, 2011

A few weeks before Max died, (I so hate having to say that) he started getting more adventurous with his eating.  Or, should I say, more independent?  He didn't like being spoon fed his liquidy meals by his momma anymore.  He wanted to feed himself - with the spoon - even though he usually missed his mouth.  Sometimes he would get a real intent look on his face too.  He had no patience for my feeding.  He wanted to shove the food in when he wanted to.  I was sort of worried he'd poke his eye out so I let him hold the spoon sometimes but cautiously.  Anyway, see below.  You'll get the drift.





Sad Stories

Monday, December 5, 2011

Does everyone's life have to have a sad story?  Do some people get away with having no real unexpected blows?  I know everyone eventually loses their grandparents, their parents and 50% of all people lose a spouse, right?  These are incredibly sad things, but we expect them, don't we?  I am talking about the stuff we don't expect.  I have been reading a lot about grief and loss and most everything is written for people experiencing normal grief.  I don't want to belittle normal grief - it is heavy stuff.  I know that my father misses his father every single day, that my mother misses her mother all of the time, that my stepmother still quotes her mother to all of us.  They will miss those loved ones forever and that is normal grief (although I am sure there is nothing "normal" feeling about it since it can be very heavy).  Losing Max was not normal.  Losing an infant suddenly is not considered "normal" grief.  It is considered complicated grief and it is known to take 3-5 years to "normalize" - in other words, it takes that long to feel about it the way someone feels about their "normal" loss.  I hope it doesn't sound like I am trivializing normal grief.  That is not my intention.  I am simply stating that there are certain experiences that go outside of the normal expectancies.  There are also non-death kinds of losses - divorce, loss of a job, natural disasters.  These are things that often are unexpected or certainly not something that you plan for...they take a great emotional toll.  Is it possible to get away with a lifetime that doesn't have any complicated grief?  Somehow we all think we are above it.  That it won't happen to us, and yet, it happened to me.

I was so naive to think that my "sad story" had already taken place.  A sad story that isn't even sad in retrospect.  In 1999 I was engaged to a great guy.  I loved him.  He was (and I am sure he still is) so funny and smart.  And though our love was never electric and consuming, we were very compatible and best friends and whatever, we were young.  He started to get cold feet about 2 months before our wedding and we called it off.  At the time, I felt beside myself.  The expectations, the humiliation, the unexpectedness - it was hard.  I had a broken heart.  For a few months, I walked around in a haze and then I realized that I could take control and start to live the life I always wanted.  I applied to graduate school, I signed up for the AIDS ride, I went on a mission to Israel, I started dating.  I turned the lemons into lemonade.  What I didn't do for a long time though was let anyone in.  I didn't want to get close to anyone because I didn't want to get hurt again.  I lived like that for about 7 years until I met Ted.  As soon as I met Ted, I realized that my "sad story" wasn't sad at all (even if I did tell him that I didn't want to "emotionally invest" in him).  Actually, I think I realized that my sad story wasn't very sad a long time before Ted, but I started to hope when I met Ted that my story would have a really happy ending.  And it did - for a little while.  I ended up with the right person for me and so I could look back at everything that happened before and know that it all happened for a reason.  I packaged up the old memory neatly and everything in the world made sense.  Still, I thought somehow that that would be the sad story that defined my growth personally.  How silly I feel now.  How wrong I was to even have thought that story was sad at all.  I was so lucky to have not known sad.

When I found out that I was pregnant with Max, I threw my whole heart in.  One of the most beautiful things about children is that you get to emotionally invest in them without fear of getting hurt, or at least, that is what I thought.  I let myself love him so deeply and I could see that his love for me went just as deep.  I had never, ever experienced anything like this.  Even with my own parents, whom I love deeply, I feel I am on guard.  I want them to be proud of me.  I want them to understand me.  I want them to care about what I am going through.  So, I have an agenda.  If Max had grown up, he would probably have had one with me too.  But, baby Max had no agenda.  Just to love and be loved.  Who knew that this simple, pure, perfect love could cause me so much pain?  Never in a million years would I have guessed.  And so I wonder what the lesson is here.  Should we be on guard always?  Never let anyone in ever?  They might hurt you with intention or hurt you because they die?  Would it be best to just detach and take care only of myself.  I did that for a long time and it was lonely.  Lonely is so much better than this complicated grief that I feel.  How would I feel today if I hadn't thrown myself entirely into the love I felt for Max?  Guilty?  More sad?  Ted and I want to have more children - should I protect myself by not getting too attached?  I was careful not to get too attached to the pregnancy that I had several months ago and I am sort of glad, since I miscarried.  There are some who would argue that perhaps I miscarried because I didn't get too attached.  I am guarded when it comes to spending time with friends and family since Max died.  There are too many people who I know could hurt me.  I have done my best to control my bubble, even though it is impossible to control completely.  My head is spinning....as usual.  Unlike when my fiance and I broke up - this story isn't going to end up in a neatly wrapped package with a happily ever after bow.  This story remains sad, no matter how many trees get planted, or dollars are raised for SIDS research, or stories are told about Max, or siblings are born for him to NOT get a chance to love and play with.  I will never look back and say, "oh, that story wasn't as sad as I thought it was".  It might hurt less one day, but it will always be sad and tragic.  I will be sad about losing Max for the rest of my life.

I try to look for people who are further along on their grief journeys to see how they are handling them.  I have written about some of the blogs I am reading.  Some are helpful - I can see how the family continues to love each other and to honor the memory of the child that they lost and find comfort in this life.  Some are less helpful - people are angry and feeling misunderstood sometimes still after many years.  They feel no support and all of their happiness died with their loss.  I think about people I have known personally - those people who are living with an extraordinary amount of loss.  For example, I spent about two years working closely with an Israeli General, Doron Almog, through my work at JNF.  He lost his brother, Eran, in the Yom Kippur war.  Then his son, named Eran for his brother, was born with severe developmental disabilities.  The family loved this son and spent so much time and effort in fundraising through JNF and other sources and working with the Israeli government to build a residential village for individuals with such extreme disabilities.  Not a sterile, sad facility - but a beautiful place with gardens, and a petting zoo, and art workshops and a beautiful swimming pool.  Aleh Negev was already open for residents and Eran had been living there when at age 20 he died unexpectedly.  General Almog also lost 5 members of his family in a suicide bombing in a Haifa restaurant in 2003, including his cousin and my friend, Moshe Almog.  So much loss in one lifetime and Doron and his wife are still fairly young.  I try to look to them for strength.  They still manage to enjoy their family, to take vacations, to spend time with friends, to love and spoil their grandchildren and to continue to fundraise in their child's name for the village he was to live in.  Make no mistake about it though, they are incredibly sad.  And, what about the Holocaust survivors who lost their entire families and had to rebuild all over?  Many lost a spouse and several children and then remarried and had more children.  I know that some of those individuals loved their second families with abandon, so incredibly grateful to have this kind of love and hope again.  Others kept themselves removed from their children - either consciously or unconsciously trying to protect themselves from ever being so badly hurt again.  These stories are extreme and then again, you never know that you aren't going to experience the extreme until you do (or don't).  There is no way to predict the future.  

So, this is the next part of my mental debate.  Do I protect myself by envisioning the worst possible scenarios and figuring out what I will do if each of them happens? (Ted leaves me, we have another miscarriage, or many, we lose another baby to SIDS or childhood disease, one of us loses the other one far too soon.......the list goes on and on).  It makes me want to seal myself in a room and never come out because life has hurt me so much I don't think I can take it anymore.  Or, do I just live and see what happens and hope for the best and continue to love my husband with all of my heart and soul, and get excited about the idea of lots of Leviss babies and all of the fun and wonderful things we will do with them and how much I will love them for the rest of my life, and start letting friends back into my life and just hope that they can put stuff into perspective and try to be loving with me?  I think I choose the latter, but it is not an easy choice and it won't be easy and I am not there yet.  I will do the best I can and try to live one minute at a time for now.  It's what I have to keep coming back to because I really have no alternative.  

Sunday, December 4, 2011

Every day I get through feels like a complete miracle.  It is a complete miracle that we have made it this far.  It has felt like an eternity to both of us and yet, so far, time has not proven to be much of a healer.  Time has been good and bad to me.  In the very early days, I was in shock, which allowed me to be distracted by visitors and conversation.  In the months immediately following the shiva, the horror of what had happened to my precious baby was with me during all waking and sleeping hours (and minutes, and seconds).  The 55 hours from hell played in my brain and flashed in front of my eyes all of the time.  It felt unbearable, like at any minute, I would just fall on the ground and die.  I actually wished I would because every movement I made felt like a puppeteer was pulling the strings on this body I recognized but that was totally disconnected to me.  Going to Catalina for our anniversary was out of this world.  A totally wasted experience that only made me feel more disconnected to myself and my child.  Now that Ted and I could probably actually use a weekend away, we are afraid of reliving our Catalina experience and so we put it off.  As time has passed, I feel more "grounded".  Only meaning, I recognize that this actually is my life and I don't get to just lay down and die.  The slideshow doesn't play all day long, but that is because I have learned to control it somewhat.  I only feel the horror for short periods of time each day - an hour here, an hour there.  Still, at least once a week, I step back in time and have full horror slide show days.  They suck.  Now, what we both feel is a more profound sadness.  Max is more and more in our past.  We are really not parents anymore.  We have nobody to take care of but ourselves and the dogs.  We miss everything about him and sometimes it takes an effort to remember all of the little details of this wonderful person that we love.  The absolute worst times of day for me are mornings and bedtime.  In the morning, I try to keep my eyes closed as long as possible, willing the day to go away.  Eventually, I drag myself out of bed and go through the motions of my day.  I have mixed feelings at bedtime.  I am in shock that I actually made it through another day but I am reluctant to go to sleep because a) I might have a nightmare, b) It is really hard for me to fall asleep and stay asleep and c) I know I am going to have to wake up and do the whole thing all over again.

Toes!

Saturday, December 3, 2011

Maxie had the cutest little tiny toes.  SO tiny!  When Max discovered his toes, he just couldn't get enough.  Those toes were always in his mouth - on the changing table, in the crib, in the bath.  Yummy!

What is SIDS?

Friday, December 2, 2011

I wish I didn't know as much as I do and still, I know next to nothing.  There are so many theories and precautions and yet, there are always exceptions to the rules.  What I know is this - SIDS (Sudden Infant Death Syndrome) is the label given to the death of a seemingly very healthy baby who stops breathing, who shows no signs of any other disease or suffocation, and for whom there is no explanation for their death.  Looking at SIDS in this way, it is a death for which every possible explanation has been ruled out.  However, there are certain things that we know happen - a healthy baby, is asleep or at rest, they are unable to take a breath, and they cannot be resuscitated.  These factors have made researchers take pause and think that there must be something there.  While they have not come up with the explanation, there are those who believe there is something that is happening, illustrated by these specific factors, that point to there being a real cause and effect.  From what I have learned, the leading SIDS expert in the country is a woman named Dr. Hannah Kinney at Children's Hospital in Boston.  Her research has been in defining the cause of SIDS and the hypothesis which she has been testing is a brain stem abnormality in babies that affects their ability to regulate their sleeping and breathing patterns.  Now, I can't tell you much more than that except that somehow serotonin uptake in the brain is affected by the abnormality.  The baby is unable to identify high carbon dioxide levels and low oxygen levels and therefore change their position to get more air.  This is also, by the way, why Maxie is considered old for this to have happened and why it is most common in babies under 4 months.  Older babies can change their sleep positions easier than newborns.  In most cases the sleep conditions of the baby who dies contribute to the high carbon dioxide and low oxygen levels, which is why the American Pediatric Association recommends not putting babies in their cribs on their tummies, with blankets, bumpers, stuffed animals, or anything else (boppy pillows, sleep positioners, etc...) and also to keep a fan on in the room to keep air circulating.  Dr. Kinney truly believes that it is possible that the cause of SIDS can be found and that with that, a potential test for the abnormality would be identified, along with a potential cure.  Her research is being funding by private dollars in addition to National Institute of Health grants and other sources.  After we complete Maxie's forest (25k to go!), we will be raising money for Dr. Kinney's research.

There are other theories as well however.  Since 1997, the New Zealand government has been endorsing a national "mattress wrapping" campaign.  Dr. Jim Sprott's research has concluded that the issue lies in the baby's crib mattress.  The chemicals contained within the mattress grow a fungus that becomes toxic to babies.  (You can read more here: http://www.pnc.com.au/~cafmr/sprott/).  He has developed a specific way of wrapping the mattress, which apparently has been so successful that not a single baby has died on a wrapped mattress yet.  100% success rate.  Why aren't all governments encouraging mattress wrapping?  Dr. Sprott wrote a book called "Cot Death Cover Up" which basically points to a conspiracy theory with the SIDS research institutes, the governments, and the manufacturers of baby mattresses.  I am not one for conspiracy theories (even if I do like psychics and mediums), but 100% success rate has me sold.  All Leviss rainbow babies will be sleeping on wrapped mattresses.  Of course, Dr. Sprott's theory does not explain the woman whose baby died while she was nursing him or the one who died while in his mommy's sling and I have lots of other examples of exceptions to the "baby died in the crib" rule.

So, what do parents do about their babies or future babies?  I guess they pray.  They try to have faith that their baby will not be one of the few unlucky ones to have been born with this brain stem abnormality.  They will never know until their baby becomes one of the unlucky ones (like Max) because there is no test anyway.  You can follow all of the APA guidelines.  I know lots of parents who have told me that their babies just sleep more soundly on their tummies so they just put them down that way anyway.  I would obviously not take that risk, and didn't take it with Max.  I would suggest that parents make sure that their babysitters, nannies, parents (grandparents) and daycares are following the rules too.  Being liked by the nanny isn't worth not insisting that the guidelines are followed.  Your baby's life is most important.  I would wrap my mattress.  In the worst case, a wrapped mattress can't hurt.  You won't know if your baby has this issue so make sure that the oxygen is circulating wherever they are, keep a fan on low in the baby's room.  I have even seen guidelines that suggest using an air purifier.  I know that with our next baby we will also use our Babysense monitor that Gigi bought us for Max in addition to a snuza baby monitor.  The Babysense monitors movement under the crib mattress http://www.babysense.net/.  The Snuza clips right on to the diaper and monitors breathing and movement there http://www.snuza.info/.   Maybe at least this will help us sleep.  We will take a CPR class and probably retake every few years.  The truth is though that even if the baby stops breathing, if it is a true SIDS case, we won't be able to resuscitate him/her anyway.  Still, I know this can never happen to us again.

Losing Max has changed the entire course of our lives.  It has made a previously safe world terrifying.  It has forced us to take a step back from friendships that weren't very deep or were somewhat one sided because we don't have the energy right now for anything that isn't real or for people who don't truly care about us.  It has made us feel alone.  It has 100% forced us to question our faith and whether our community is even the right fit for us in some ways.  It has empowered me to bring up the elephant in the room (my son!), even when people have been clear that they don't want to talk about him.  It has inspired me to want to share the beauty of his soul with you, so that you can know him the way we knew him.  It has crushed our hearts into a million pieces.  With everything that I am, I will do my best to ensure this never happens to us again or to any other family that I can affect.  That is the most I can hope for at this stage.

Thursday, December 1, 2011

Time is moving in slow motion.  I can't believe it has only been four and a half months.  It feels like it has been a lifetime.  Last night, we had some crazy winds.  I heard that they were up to 100 MPH.  Our Eucalyptus tree was dropping mad branches on our roof all night.  I was worried that Maxie's tree was going to blow over.  At one point, I actually thought to myself that I wanted to bring the baby into our room.  But, then I remembered, I don't have to protect the baby, because he is already gone.  I already failed the job of protecting my baby.  And, that's the kicker - I thought I was such a good mother.  I knew I was utterly devoted to him.  I can't begin to tell you how I read and researched about first foods, and best nutrition and we've already gone over all of the pumping I did.  I literally would pump and drive because I often didn't have time in between appointments to pull over and pump on the street and my job was not an office job (but, believe me, I pumped there too).  Not that I actually think breastfeeding matters now since a woman in my online support group lost her baby WHILE she was breastfeeding him.

I woke up this morning thinking about Maxie's baths, something I think about a lot.  Giving your baby a bath is really a warm and nurturing time.  It was my favorite time.  I was remembering the steps I took with each bath.  Lifting the arms and cleaning the armpits, and cleaning behind his ears, and shampooing his hair.  He hardly had any hair but who doesn't love a nice scalp massage?  I just knew it felt good and I wanted him to be relaxed and loved.  We had this little brush that we would brush his hair with in the bath. I always parted his hair on the right and combed it over.  It was a little nerdy looking when wet but soooooo cute.  Ted liked to brush Max's hair into a Caesar-do.  Either that or just straight back.  Once it dried, it mostly just ended up the same.  There wasn't enough of it for a real hair-do.  A few weeks before he died, I bought him a bunch of little board books at Costco, including this little waterproof book about duckies.  I would give it to him every night in the bath and he would hold on to it, chew it, look through it.  I love to picture him in the bath, "reading" his little duckie book and smiling with his nerdy comb over.  I loved giving him soft kisses on his wet cheeks.  I loved hoisting him out of the bath and wrapping him in a towel and making him feel warm and cozy.

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