Ramblings of a grieving brain

The only way that I can "distract" myself is by reading.  The books I read seem to fall into one of two categories: Grief and Loss (specifically of babies and children) or Afterlife and Reincarnation.  I tried to get started on a "No. #1 Ladies Detective Agency" book that my mom read recently and enjoyed.  I made it through about half of the first chapter and couldn't continue.  Cute and upbeat isn't for me.  I like my books dark and broody.  I am currently juggling two books: "Healing through dark emotions"and "The Tibetan book of living and dying".  The first book is written by a woman who lost a child.  She had a stillbirth.   I have started several books that are specifically written for woman who have experienced miscarriage, stillbirth and infant loss.  Here is the thing though, every single one of them focuses on how sad it is NOT to bring your baby home from the hospital and to never be able to bond with the baby outside of the womb.  When I am "lucky", there is a sentence or two about SIDS.  I guess it is THAT rare.  This is not my experience.  It just isn't.  It isn't the same.  Many people have suggested that I join a grief group and they would be right in thinking that would be the right place for me.  I feel completely alone.  I long to befriend women who have had my experience.  In my loneliness, I have thought about rejoining my book club or hanging out with my girlfriends but knowing that the bookclub conversation always turns to children and that my girlfriends leave me to go pick their kids up is heartbreaking.  The thing is, the grief groups categorize your loss.  I fall into the groups that are for women who have experienced miscarriage, stillbirth and infant loss.  In the groups I have called, the leader can usually name the one woman who experienced infant loss who sometimes shows up.  The people who have lost children over one year don't believe that my experience validates my being in their group.....the one for people who lost children.  Now, listen, I understand that miscarriage and stillbirth must be agonizing.  I can't even imagine that the stillbirth women feel like they can entirely relate to the miscarriage women.  It is all devastating, it just isn't the same.  And, ya, I had a miscarriage, but it was early and in comparison to what I have been through, it was more like a setback.  Sorry.  That is how it felt.  I was reading the blog of another SIDS mother who said that after her baby died, she had two miscarriages and that people kept wanting to talk to her about the miscarriages but nobody would mention her beautiful baby that died.  It doesn't surprise me at all.  If I had just had the miscarriage, I might want to talk about it too but, as my experience goes, it was just sort of a bummer that added some insult to my deep and painful injury.  I wonder if this is how the parents of children who have lost children over the age of 1 view our loss.  Maybe that is why they won't let me in their group.  I think the other thing that keeps me away from "my" group is that I am scared.  I am not scared talking to people who have lost born children, because I have done that.  I am scared talking to people with pregnancy complications because I want more children.  But I still long for friends who understand me.  Sometimes I think that I won't be able to reemerge from my hidden life until I have another child so that my friends can comfortably talk about their children in front of me again.  I pray that when I have another child, I will be able to listen and relate again.  I told Ted the other night that I wish there was someplace we could move where there were no children.  The only place I can come up with is Club Med for adults, but who wants to hang out with a bunch of horny, drunk singles when they are grieving?  Plus, Ted pointed out that even if such a place existed, why would we move there if we want more kids?  I'd like to live there and eventually be the only people with kids.  Then, I wouldn't have to run into kids that are the age Max WOULD be IF he had lived.  I wouldn't have to answer questions about how many children I have (because, for the most part, people without kids don't ask.  I never thought to before I had Max).  I wouldn't have to worry about getting sad every time I heard a mother say, "oh, he is my second child" after doing something neglectful.  Every which way I look at it, the best solution seems to be to hide in this house forever.  Perhaps I will home school and order groceries online so I don't have to ever have to leave.  It's insane really but the truth is that I don't want to have to be strong.  I have been strong for many things before in my life and I just don't want to have to be strong for this.  My brain is about to explode so I'll stop.

Discovering Maxie

In March 2010, I was trying to lose some weight.  I had gained only about 7 pounds but I don't know where they came from and I couldn't get rid of them.  Talking with someone one day, it was suggested that perhaps I was pregnant.  No way!  We hadn't been trying very long at all.  Really, only about a month.  Still, I thought, better to be safe.  So, I stopped at the pharmacy next to my gym after work.  Funny, the pharmacy was in West Hollywood and the pregnancy test I bought was literally the only pregnancy test in the place.  Anyway, that weekend Ted was out of town, on a ski trip in Colorado with friends and I was staying with my mom.  I came home and took the test and it was positive.  Unbelievable!  I didn't feel pregnant.  Whatever that felt like.  I lasted until the next morning before I told my mother but decided to wait until Ted and I were together to tell him in person.  I started to plan it out.  At first I thought maybe I would just leave the pregnancy test out for him to see, and then he would probably look at it and say something like, "Is this what I think it is?" and I would say, "Yes, we are pregnant!" and we would cry out of joy and fall into each others arms.  Or, maybe I would sit him down and say, "I have some wonderful news!".  I really didn't know what to do but I had 3 whole days to think about it.  Every time we spoke that weekend, my heart was pounding out of my chest.  This was the best news in the world and I was dying to tell him.  So, finally, the night came that Ted was to return.  I wasn't sure exactly what time he would be coming home but it seemed like it was getting really late.  Finally he called me from the parking lot at LAX where he had left his car.  The battery was dead.  Since I am in the one with triple A, I suggested that he use my card number.  The customer service person insisted that the card holder be there to show the card, so I jumped in my car and drove out there.  The car was jumped and we both headed back.  By this time, I had worked myself into such a mess.  My whole plan was ruined (now I don't even remember what my plan was).  We came into the house and I started crying.  "What's wrong", he asked, and I just blurted out, "I am pregnant".  Must have been the hormones.  I was so emotional.  "That is wonderful news", he said, and he came over and sat next to me on the bed and hugged me while I cried.  It was just too long to have this secret and not tell him.  I will never forget that night because it was the beginning of the next chapter for us.  A chapter that we knew would change our lives and that we thought would make life better for the rest of our lives.  In fact, Max was the best thing that ever happened in our lives.  I don't think either of us would ever trade one minute that we had with him for all of the money in the world.  The innocence, the love, the bliss of knowing that we were having a baby and would become a family is something we will never feel again, no matter what happens moving forward.  There will always be a huge missing piece.  We will always be missing our baby, Maxie.

Grace

In the year leading up to Ted and I getting engaged, I have to say, I didn't really know if it was going to happen.  I guess he was a typical guy in the sense that he just didn't seem sure of me.  I was sure of him, from the beginning.  Maybe I had been out with enough people that were wrong for me to know who was right when he finally came along.  I knew that if he decided that I wasn't the one for him, getting over it was going to be a LONG road.  I tried to think positively but I didn't really get the reassurance from him to know that we would end up together.   It made me sad and scared.  I remember as we got closer to getting engaged, I had a feeling it was coming but I was still scared.  He hadn't really told me outright that he wanted to spend his life with me and so I felt like until I knew for sure, it was anyone's guess.  The idea of living without him was more than I could take and I remember crying to him, "I can't live without you" and him saying, "You won't have to."  Finally he proposed and it put my mind at ease....mostly.

Last summer when I was pregnant, my mom was diagnosed with breast cancer.  It was in the very early stages and she seemed very confident that she would be just fine and we mostly were too.  But, I was scared.  Scared to death that things wouldn't go well.  I needed her help with this baby.  I needed her to be by my side for as long as possible.  I cried and cried to Ted, "I can't live without her!", I said.  Thank g-d, her last radiation treatment was the morning that Max was born and she is healthy.  I don't have to live without her.

I never, ever thought for a minute, that I would have to live without Max.  It never ever crossed my mind.  I can't live without him!  It feels like there is no purpose for me now without him.  How can I live without my baby?  It is too much for me.  Sometimes I wish Maxie hadn't been so special.  Maybe this would be easier to take.  But, in my eyes, he was perfection and so so special.  I loved everything about him.  So, it isn't like I just lost some baby.  I lost Max, the most wonderful person that I know.  I am so alone now.  And, I know I am still a "mommy" but not really.  I don't get to kiss my baby.  I don't get to cuddle my baby.  I don't get to change his diaper or rock him to sleep or give him a bath.  I just look at pictures and talk to the sky.  It is agony.  I am in so much pain, it is really agony.  Each hour is a test.  Living without him is my worst nightmare.  The next worst part about not having my baby, is how alone I feel.  I've never been so alone in my life.  Often times I feel more lonely with people than when I am actually alone because very few are comfortable with and/or understand my pain.  I guess I express too much.

I have been thinking a lot about whether I could even fake stoicism.  Stoic grievers are graceful.  They are Jackie Kennedy.  They hurt on the inside and that makes them more sympathetic characters than those of us who express.  Expressing how you feel is looked down upon.  Nobody really wants to see pain.  It is hard to be around someone who is full of so much grief, who expresses so much sadness, who can't fake it.  I just cannot fake it.  I am not sure why.  I am just not built that way.  Maybe Jackie Kennedy was bored with her husband's antics.  Maybe they had grown apart?  Maybe she was in a tremendous amount of shock.  I am sure I was more stoic in the days immediately following Max's death because of the sheer disbelief and shock running through my system.  Who knows how she pulled it off, but this is why I prefer to hide.  If you can't see me, you don't have to be annoyed that I am not acting graceful.  There are very few people who can handle this raw expression of emotion.  If you are this sad, you are borderline suicidal or you should be medicated.  We live in a funny world, where when bad things happen to you and you react, you are a crazy person.  Unless you can find a way to be graceful, you should probably be medicated and locked away.  I am not graceful - I am angry, I am jealous, I am sad, I am devastated and I am lonely.  It's hard to find the grace hiding within those emotions.  I see the possibility of grace in my future, but it is still too soon.  For now, I am just having too much trouble living without him.

Maxie's physical therapy

I've written a little about how Maxie needed a helmet for 6 weeks.  His head was a little flat on one side.  The doctors thought it was because of the way he was growing inside of me, with his little hand pressed against the side of his head.  I am sure that all of the time he spent on his back didn't help either. He did a lot of sleeping in those first few months as babies do.  Anyway, in addition to the flat head, he had some stiffness in his neck that needed physical therapy.  We had to turn his little head to look over his left shoulder and hold it for 5 seconds 3 times and then stretch his right ear over his right shoulder for the same, 5 times a day.  Ooooo, Maxie didn't like it.  How would you like someone holding your face to look left with their hand.  Neither of us really liked doing it much.  We usually did his physical therapy on the changing table and we did find that if we put a really fun light up toy on the table for him to look at, the whole thing was a little easier for us and somewhat fun for him.  The occupational therapist we saw had this great Fisher Price snail with a mirror that lit up and played music that Maxie loved.  We left our first appointment there and went straight to Toys R Us to get Maxie the same toy.  We did physical therapy with Maxie until he could hold up his own head.  By then, he had his helmet off, he had a perfectly round little head and no more neck stiffness.  We were so proud!

Max always looked right

He loved this little snail toy

This is right after Max was born.  The Doctors believe that Max had his hand against his head in my uterus!

The Dream

Most of the time, it feels like my brief 9 and a half months as Maxie's mommy was just a dream.  I feel like I am writing about it all in part to prove that it really happened.  I wanted to be a mommy forever.  I never knew it would be as wonderful as it was.  I think that I had only been prepared for the hard parts (which were indeed hard).  I knew I would feel abundant love for this child, but I had no idea how that love would transcend any feeling that I had ever had before.  There are no words.  It is the most pure, deep, and satisfying love there is.  I have this terrible waking nightmare about looking back at my life and remembering that I was a mother once, for nine and a half months, to the most beautiful and wonderful child, and that is the end of my motherhood story.  Maxie's death cannot be the end of my motherhood story.  It just cannot be!  I am gripped with fear and I wonder if I could ever love another child as deeply as Max anyway.  Even if I only loved another child half as much, it would be a love that would be so consuming and pure.  A child who was loved even a quarter as much as I loved Max would never feel anything from me but deep and penetrating adoration.  I am assured that parents love all of their children equally.  That is very comforting to know.  To the rest of the world, it has been not even four months since Max died.  For me, it feels like decades.  I have aged at least that much.

My little dream baby.  Almost too cute to have been real

Grey

Yesterday was grey and gloomy.  I wanted to curl up on the couch with my Max and cuddle the day away.  I did the couch part pretty good.  I am liking grey and gloomy a whole lot better than all that sunshine that usually resides here.  Back to that whole Anderson Cooper theory of "matching your outsides to your insides".  I see everything through grey colored glasses.  There is no joy anymore.  This morning I found two grey hairs framing my face.  I have suspected for some time that they were in there.  Hiding in the back perhaps.  But, now there are just front and center, as they should be really.  Let's face it, I am not getting any younger over here.

I wanted to restate that we are seeing a grief counselor that we love.  For some reason, people have started asking that again, even though I know that I have said it.  Maybe you think we were seeing someone and then stopped?  My dad even asked me last week.  Our grief counselor comes to our home once a week, which is amazing.  She believes that we are exactly where we should be.  When I tell her that I cannot get off the couch, she answers "how could you?".  She has a lot of faith in us and our process.  Ted and I both look forward to our sessions with her.  We feel very strongly that she is on our team.  We believe that she wants to see us succeed and will support our path to "recovering" from this tragedy.

Also, I have been hearing a lot of, "People don't know what to say to you."  So, I thought that maybe I should just remind you what you can say to me.  It's actually probably just helpful to know what to say to anyone who is experiencing grief, not just us.  It is so much better to say something than to just ignore what has happened.  It is so much better to just say, "I am so sorry about Max".  You don't even have to say anything more than that.  "I am so sorry about Max" pretty much covers it.  If you are checking in, you could say, "how are you guys doing?" I know it is uncomfortable to acknowledge our grief but chances are, you really ARE sad about what happened to Max and that you really ARE wondering how we are doing.  If you aren't interested and don't care, we probably don't really need you in our lives.  If you are uncomfortable addressing the sadness we feel, think about how uncomfortable we probably are.  I am not going to make you talk about him if you don't want to, but I welcome talking about him if you can handle it.  It is ok to talk about Max.  He was an innocent, adorable, wonderful little baby boy.  It is actually a little weird to me that nobody can say his name.  You aren't going to "make me sad" or "remind me" that my baby died.  You do not have that much power.  I am already sad and I think about it all of the time.  It's pretty much all I think about.  While you are trying to distract me, I am usually thinking, "this person is trying to distract me.  I wish they would mention Max."  Also, it has got to be exhausting and awkward for you to work that hard to try and make me forget.  A mother will not forget her child.  It is just impossible.  Doesn't matter how funny or interesting you are, you are attempting the impossible.   I actually think it would be a whole lot less painless to just say, "I am so sorry about Max".  Again, sadly, I am probably not the last person you will meet who is in excruciating amounts of pain all day and night because of grief.  Everyone dies and not everyone does it peacefully at age 90 in their sleep (and by the way, many of you have even recently told me about the intense grief you have felt around your 90 year old mother/father/grandmother/grandfather who passed away in their sleep.  Again, just IMAGINE how we feel.)  You might even be the one who has to experience the complicated grief, but I sure hope not.  Anyway, "I am so sorry about Max."  It's pretty easy actually.  Maybe if you know you are going to see me, you can just say it to yourself a few times so that it comes more naturally.  I promise, it will make everything that comes after that sentence flow a whole lot more naturally and you probably even feel a lot better about the experience too. Go ahead, rip off the band aid.  I promise it won't hurt you as much as you think.

Crawling

If Max had lived two more days, I am sure he would be crawling.  He was ALMOST there.  He could get himself on all fours easily.  He just needed to get somewhere.  He could move forward about two hands worth but then, SPLAT.  But, then right up again with a big smile.  I was preparing to baby proof the house the coming weekend in anticipation of the mayhem to come.  Oh my gosh!  I couldn't wait to see that kid GO!  He had so much energy and surely lots to explore.  You can see for yourself....he was ALMOST there!  Just a few more days is all it would have taken.

11.11.11

You must know by now that we are into numbers.  According to some of the more spiritual people I have gotten to know lately, today is perfect day in time to manifest all of your desires.  The thing is, the only thing I want, I cannot manifest.  It is impossible.  The only thing I want is Max.  I have been thinking so much about wanting.  Everyone wants to have a better job.  We want to have a nicer house, one with a swimming pool.  We want nicer clothes.  We want more money for sure.  We want, we want, we want.  Some people have so much and yet they still want.  If nothing else, I have learned this - nothing matters at all except the health and happiness of the ones we love.  I do not live in a big house (it is cute and suits us well).  I do not have fancy clothes (STILL rocking my maternity hand me downs and my pre-maternity gear wasn't much better).  We do not have a lot of money.  We were happy because we had each other and Max and loving family and friends.  That is all you need.  If you can't afford the house you are living in, sell it and move into a nice apartment with your healthy family.  It isn't the end of the world.  It isn't even about falling in love and having children...although that is an added layer of loveliness.  It is about loving who you have in the moment because they may not be here tomorrow.  Being in the moment is so important and one thing that I do not regret is that I was always in the moment when I was with Max.  I am sure it had a lot to do with being a working mom and cherishing every minute that I had with him.  But, I never felt the need to busy myself with anything other than being with Max and I am so grateful for that.  I know, I know.  I am a walking cliche and kind of preachy too (really, what happened to old Abby) but all of the material stuff in the world is so meaningless AND, the wealthiest people I know are some of the most unhappy, grumpiest people I know as well (I am sure they know it too).  What we have lost was THE most important thing in our lives. There is nothing I could wish for that would make any kind of difference at all. If I stumbled upon that genie who would grant me my greatest desire, I would have nothing to ask for, unless he could bring back the dead.  I am down in the dumps. I've been having a hard time reconnecting to Maxie's spirit since we returned to LA. Missing Maxie today as every day. Maxie Moo, where are you?

Too hard to understand

Once again, I feel the need to try and explain myself.  I know that it is SO hard to imagine being in our shoes.  I know that it is.  Every day is incredibly hard.  I will say this, I get a strange mix of responses but equal amounts of "I am not sure I could go on living if I were you"s and "You sound borderline suicidal.  Are you seeking professional help?"s.  So, you aren't sure how I go on without killing myself and at the same time you seem to be incredibly worried that I might kill myself.  Which is it?  I am not going to do it.  I have mentioned so many times about the other parents who have told me that they felt JUST LIKE I DO.  One woman who lost an adult child told me that for the first year after the death, she thought about sticking her head in the oven every time she cooked dinner.  She didn't really do it.  Another woman (who I mentioned in my comment to the Anonymous comment on the "Still here" post.....a "different", nicer anonymous) told me that every time she got on the highway, she sort of hoped that a truck would topple her car over the side.  Then, just now, I remembered reading something the Daddy on my favorite blog wrote soon after his daughter died.  Since he put it in the public sphere, I don't feel bad posting a link to it. : http://thespohrsaremultiplying.com/mike/from-mike/.  Rest assured, this man is still alive.  He has another daughter that he is nuts about and still manages to be completely grief stricken when it comes to his first born.  His post today had me in tears from the moment I woke up: http://thespohrsaremultiplying.com/mike/to-maddie-on-her-fourth/.  It also explains how sad it is to contemplate the rest of his life without her.  Tomorrow, the 11th would have been her fourth birthday.  I think if you read what he wrote and also some of the comments below from other bereaved parents, you will understand that we all feel this way.  Frankly, I cannot imagine that a parent could lose a child and on some level not want to die.  It is THAT tragic.  In fact, wasn't our whole country riveted this past summer over that woman, Casey Anthony, who we all thought murdered her daughter simply because she didn't act appropriately after her daughter died.  I suspect something was amiss for sure, because it is simply impossible for a bereaved parent to imagine living a whole life without their child.  So, while I am promoting the daylights out of the Spohr family, their beautiful daughter, and their blog/cause/life (they don't know me from Adam), I will tell you about the lovely thing that they are doing in memory and honor of their daughter's fourth birthday.  They wrote and produced a song that they are selling for 99 cents on iTunes and Amazon to support their charity called "Friends of Maddie", which supports families in the NICU.  Having spent almost three days in the PICU and walking away with a mad case of PTSD, I can tell you this is a wonderful cause.  Anyway, the information is here: http://thespohrsaremultiplying.com/friends-of-maddie/you-are-the-one/.  It is a sweet song and to help for only 99 cents feels pretty good.  Their song was number 4 on the Amazon singer and songwriter top hits on Tuesday.  Not bad.

Barefoot

My Maxie liked to go barefoot, just like his Daddy.  I never once put a pair of shoes on him.  Not once (sorry if you gave us any shoes...hopefully they will get used eventually).  We got loads of socks as presents for Max when he was born.  The cutest little socks you ever saw.  I had a perfect pair of matching socks for every single outfit I put Max in.  And for the first three months, he always had a pair.  And, then, I started noticing that everywhere I showed up with Max, he'd only be wearing one sock.  There were lonely socks all over the back seat of the car.  It was his first trick really, pulling off the socks.  He just didn't like them.  I'm not sure why I still think it is so funny for a teeny tiny baby to have such a distinct dislike of socks. I tried for months, didn't want his little toesies to get cold, until I finally just gave up.  At least 30 pairs of socks that were never used.  My kid liked his feet free!  All the better to kiss them anyway.

East Coast Highlights

Traveling to the East Coast was hard for me, in large part because I haven't left the house for more than a couple of hours in almost four months.  It was also hard because the last time we were there, we were there with Max.  Anyway, while it was very emotional, I wanted to mention some really nice things.  Our niece, Sadie, seems to love us just as much as ever, even without Max.  She showers attention on both of us whenever we are around her, calling out our names, An Abby (Aunt Abby) and Unko Teddy (Uncle Teddy) constantly.  We love it.  We got to spend time with Ted's family, which was so important.  We stayed at Auntie Beth's house, even though she stayed in Brooklyn the night before the Marathon and a few of Teddy's friends came over, which was so nice.  How hard it must have been for them to see Ted and I in such a sad state.  They asked lots of questions about how our lives are now, about Maxie, about my medium friend.  They didn't ignore the elephant in the room.  They got into it with us, even cried with us, and I so appreciated it.  Since Max died, it is hard for me to just make small talk.  I want to talk about the most important thing in our lives - MAX.  Chris Barry's wife, Jodi, made us a wonderful photo album for our photos of Maxie.  It is so creative and shows so much love. After my panic attack, we drove straight to Carmen's apartment in Manhattan and she greeted us outside and helped me walk into the building and up to her place.  I was not in good shape.  I was extra slow and couldn't breathe easily yet.  She let me lean on her and even made me laugh a little.  She had all sorts of snacks and drinks for us when we got up there.  If you know her, you know she is a wonderful hostess.  She stayed with me in the apartment while I laid on an aero mattress on the floor, crying on and off for hours instead of watching the marathon, which I now know is one of her favorite NYC things to do (watching the Marathon, not watching me cry).  When we went to the bar, there were so many friends and family members there to greet us and celebrate Beth. I appreciated so much how so many of them came to talk to me about Max, about who he was, and about what they can do to help keep his spirit alive.  My birthday was not happy, but Beth and Carmen had me laughing a lot of that morning.  They are both so funny and it was actually so nice to see both of them so happy.  They are in good places and they both look beautiful and happy and that made me feel good.  That night, we went downtown to Mario Batali's restaurant Babbo, where our friend Josh Laurano is a chef.  He came in on a night he doesn't work to make our dinner.  It was incredible.  There were many courses, all paired with perfect wines.  Josh came out of the kitchen and described each course to us as it arrived.  We felt so special.  It was amazing.  I used to love playing the last supper game with friends.  You know?  What would you order if you were on death row for your last meal?  Mine has been KFC for a few years standing.  I know it is way gross, but that is why I never eat it and frankly, I love it.  I have changed my order (so you know).  It is now Raviolo with ricotta and duck egg inside with shaved truffle on top.  AMAZING!  He picked out each dish for us special.  Then, when the check arrived, the whole dinner was a gift from our friend Jeff Shepro.  We definitely over ate.  We were uncomfortable in the cab.  I wish I had worn a looser waisted outfit to dinner.  We rolled up to Carmen's apartment and passed out.  The next morning, Gigi drove all the way back into Manhattan to pick us up and take us to the airport.  I have put my focus on the bad and hard but I wanted you to know that there was a lot of nice and good too.  Below is a photo of one of the five desserts that we received AFTER a sherbert course!  Also a photo from Carmen's balcony.  Nice view!

Still here

You can see by the simple fact that I am writing that our plane did not go down in a fiery blaze as we thought it would.  We thought 11-8-11 would be the end...or maybe the sick/sad part of us sort of hoped it would be the end.  When I got on the plane, I felt an ounce guilty that I was hoping for the catastrophic ending but there were no babies on our flight (thank the lord) and the woman next to me was reading "When Things Fall Apart", which signals to me that she is also experiencing a heavy period of life and probably would have welcomed the fiery blaze scenario as well.  She also had a sad, sad face.  It was like looking in a mirror.  I was almost tempted to befriend her except, who needs it really?  Instead I got to thinking about how much I love Ted.  He is so sad and it kills me.  I want him to have a happy life and even though it feels impossible, I think it has to be my new life's mission.  Maybe I won't get to take care of a baby but I need to take care of Teddy.  So far, I have failed miserably but he has taken very good care of me.  I am not sure what I would have done lying on the ground in that parking lot, thinking I was dying, if he hadn't be kneeling right over me.
Somehow I thought coming home would bring some peace back into my life but it is excruciating.  Though, last night, Ted lit a fire in our bedroom and we watched just a little television and went to sleep at around 8.  I woke up at around 8.  I needed that sleep!  
I want to talk about some of the nice moments that we had on the East Coast but I am just too exhausted right now.  I promise to do that though because they were really special and made us feel very loved.
If you haven't received your t-shirt and you ordered it, it's coming.  There were a lot of orders that came in in the week before we left and we had to reorder tshirts and then we wanted to try and get them to the folks who would be at the marathon first.  I am sorry if you didn't receive it in time but it still means a lot to us to know that you will wear them now....even if it is just to sleep in.  Thank you for your support.

11-8-11

Ted and I got married on 9-6-9 and Maxie was born on 10-7-10, so we definitely thought something big would happen on 11-8-11. We are flying home today. I need to be home so bad, where I can feel Maxie's spirit. I haven't felt him in so long. I continue to be astounded by how much worse this feels every day. I hate life without him. I don't recognize myself. I am fat and unattractive and wear the saddest face. I also decided to go brunette and the woman who cut my hair gave me a Rachel from Friends haircut, circa 1995. So, the few times I have tried to look presentable, I have had to struggle with my hair to keep it from turning me into a complete laughing stock. I am uncomfortable in my own skin. I want to thank those people this weekend who made a special effort to make me feel more comfortable in my skin. Who were t afraid to acknowledge our pain, who spoke about Maxie and asked questions about who he was. I know it is hard for you to talk about him. I know you think if you mention him, I will cry. If you don't mention him, I go home and cry harder. But, I do get it, it's hard for you.. And that is ok. Those of you who made a point to say something, helped me feel more significant, which is not something I feel anymore. I am not a mother, I am not pretty, I am not thin, I am not functional, I can't control my own body. This weekend was hard. Thanks to those of you who made it a little easier. Let's see if 11-8-11 ends up being anything big.

38

Today I turn 38 years old.  What I wouldn't give to go back in time.  I have never been one to worry about getting older.  I have always felt exactly the same.  This year is different.  I am older.  Much older than a 38 year old woman.  Much more aware of all of the good and bad that life has to offer.  All I have now are memories of what my life was.  It was a lovely 37 years.  Now it is up to me to decide what the next part of my life (whether a day or another 37 years) will look like.  They say you are the master of your own destiny.  That is not exactly true, but I have to decide how I will move forward.  What I do know is that it is up to Ted and I to make sure that Maxie's life continues to be remembered and have meaning.  If nothing else, I know that will keep me going.

Team Maxie

Beth ran an amazing marathon.  She wore her Team Maxie gear, complete with photo buttons of Max.  She lost one of the buttons at the beginning of the race, turned around, picked it up, and then ran the rest of the race holding the button so that people could see his beautiful face.  She said people were cheering for Team Maxie and I love to know that all day people were yelling his name, even if they didn't know what they were yelling it for.  Ted, Gigi, Sadie, Papa L and I drove into Manhattan from CT to watch the race.  Unfortunately, things did not go as I had planned for my own participation in cheering Beth on.  I am not sure how exactly it started or what set me off.  I don't think it was one thing, rather a culmination of weeks of anxiety around this day approaching.  November 6th was Max's due date and I so spent 8 months with that date in my head before Max arrived a month early.  Going into Manhattan, knowing that it was a day of great accomplishment for Beth and representing such sorrow for us all, sitting in the backseat next to my niece's car seat, listening to her chat to herself so sweetly, so much saddness to be in NY for the reason of memorializing my son....I just don't know.  I felt like I couldn't get any air.  I was watching the scenery whiz by through my peripheral vision.  All of a sudden I began to hyperventilate.  My father in law had to pull off the highway.  He pulled into a coffee shop parking lot, where I open my car door, rolled out the side and onto a gravely dirt driveway.  My hands curled into themselves, my face froze, my legs and feet cramped, and I felt a terrible pain in my chest.  I thought I was having a stroke.  Ted came by my side, not knowing what was happening either.  I felt very very scared and at the same time, I wondered if I would be reunited with Max soon.  Finally I moved my mouth enough to ask Ted to call 911, which he did.  The paramedics came and must have immediately recognized my symptoms and asked a few questions about my physical state before asking if there was anything else going on.  I answered that my son had died three months ago.  He told me I was having a panic attack and told me to breathe through it.  I concentrated on my breath and slowly my hands began to uncurl and my face un-seized but my chest was still tight and my heart was pounding as I lay there in the dirt.  After 20 minutes or so (maybe more), we all got back in the car and continued our drive to Manhattan.  My breathing remained laboured and loud for the next few hours.  I could not walk or talk easily.  I could hardly stand.  I could not go cheer on Beth.  Ted, Sadie and my in-laws walked from my friend Carmen's apartment on the Upper West Side to 5th Ave and 100th Street.  Carmen and I stayed in the apartment and tried to follow Beth on the internet (if you got the IMG app for iphone, it probably didn't work for you.  It seemed to not work for many).  Whenever I have talked about a major anxiety attack in the past, I didn't know what I was talking about.  Those experiences were just paralyzing fear, with sweats and a pounding chest.  This was a complete physical shut down.  It scared the daylights out of me.  I am still gripped with fear that it could happen again, and it sounds like it probably will.  It came on with no warning.  If I had been driving, I would be dead.
After my family met up with Beth at the finish line and they all walked all the way back up to Carmens.  Beth walked all the way back uptown AFTER running a marathon!  This girl has crazy energy.  After she showered and changed, we all went downtown to Toad Hall, Beth's old culinary school haunt, where many friends and family members were waiting.  I felt a surge of emotion wash over me.  My friend Joslyn grabbed my hand and brought me to the back of the bar where she held me and we cried while trying to get it together.  Slowly, one by one, various friends of Ted's approached to offer support and love.  Ted and company watched the second half of the Giants game at the bar.  Beth ordered TONS of delicious Israeli food for everyone to eat.  I made it out until about 10 pm.  Beth and Ted stayed out a few more hours until the last friend (Shepro) left.  Beth's marathon was a success!  She raised over $11,000 for Maxie's Forest, which is nothing short of completely amazing.  While I was not able to cheer on the sidelines, I have been cheering for her with my whole start since this journey began.  I am so proud of her accomplishment.  She is amazing.

We still have t-shirts for sell.  Contact Ted if you are interested in buying one: teddyleviss@gmail.com.
Thank you for your support of Team Maxie, Maxie's Forest and Beth's run.  We love and appreciate you.

Marathon

I have been thinking a lot lately about the significance of Beth's marathon run today.  What strikes me the most is that a marathon is a perfect metaphor of our post-Max life.  I am told that runners have to just put one foot in front of the other, to keep running without thinking about the number of miles that are ahead, because if they do, they will psych themselves out and lose their momentum and motivation.  I used to be a distance swimmer so I know that is how I approached my races.  I would just come up with a few songs and sing them in my head while I watched the number count that would get stuck in the water by a volunteer at the end of each lap I swam.  If I started thinking how many laps I had left, my legs would cramp and I would choke.  Whenever I think about the cruelty of Ted and I having to live the rest of our lives without Max, my heart cramps...I am paralyzed.  Life is a marathon though ours has no end in sight that we can determine.  We have to just keep running.

I am so proud to be in NY to watch Beth run.  I am so proud that she is my sister-in-law.  She has been training her heart out AND having to field weekly (if not more) calls from me, crying to her that I cannot go on.  She has talked me off the ledge countless times these past months.  Being in NY is so hard.  I love New York but even when I am on the very top of my game, Manhattan intimidates the daylights out of me.  Let's face it, I am not on the top of my game.  I have no game.  Still, being here is exactly where we need to be today, even though the reason for us all being here is the very worst thing I could have ever imagined.  I often feel like Ted and I don't have a family anymore without Max, however, it is on days like today that I realize that we have a very beautiful and large family and extended family.  In memory of Maxie - we thank you Auntie Beth for your run today and we wish you the best of luck!

I've been here before. Last time I was in this bed, my baby was in a pack and play in the same room. I brought him into bed with Ted and I to play, to nurse, to change. Last time I was here I was a mother, enjoying my little baby, watching my niece fall in love with her cousin. Last time I was here, Teddy was a father, showing his son off to his friends, most of whom already had multiple children of their own. Last time I was here I was happy. This time I lie here alone, while Teddy plays with our niece. This time I am afraid and sad. This time I am no longer a mother, just a woman, a wife, a daughter. This time I am here to memorialize the baby I love. From this time forward, everything is different.

Snuggle Nest

When Maxie was first born, he slept in bed with us in this "Snuggle Nest", given to us as a present when Maxie was born by our friend Erika.  It was pretty much the cutest thing ever.  I could turn on the little light over his head so I could see his little face in the middle of the night.  I was always checking on his breathing as well.  I guess as it turns out, these sleep positioners are not considered safe by the team of people who decide how to keep your kid from becoming a SIDS statistic.  Of course, I now know that it may not actually matter because you can't really keep your kid from being a statistic anyway.  You can just try to follow all of the rules as much as possible.  My mom put me in my crib on my stomach, with blankets and at least 5,000 stuffed animals (as I am sure your mom did with you) and I am still here.  IT MAKES NO SENSE.  And, they change the rules all of the time.  My friend down the street lost her daughter three and a half years ago when they used to recommend sleep positioners to keep babies safe from SIDS.  I have so much information swimming around in my head I don't know how I will sleep next time I am so lucky to be a parent.  Let's face it, I probably won't...and that is ok.  Anyway, I loved Maxie in his little snuggle nest.  He looked like a newborn baby glow worm.  I was sad when he got too big for it.  We switched off between the nest and the moses basket for the first few months.  He soon became a moses basket only kind of kid.  These pictures are so cute, they make my heart melt.  I just wanted to share the memory of our little Maxie in his little nest so quiet and content, sleeping like a baby.

Off to NY

If Maxie were still alive, I would be in Israel right now.  I would have arrived at around 2 pm on Friday Israel time and my friend Tali Feingold would have picked me up at the airport (because she loves me and she always picks me up).  Right now, we would probably be at her brother Ofir's house (my first Feingold friend.  I met him in a Disco in 1994), hanging out with his wife Orit and the BEAUTIFUL children.  The Feingolds are always my first stop in Israel and usually my last too.  In 2009, Ted, Prima Sharon and I spent two days in Ofir and Orit's apartment on lock down because of a big thunderstorm (and also, we may have just been feeling lazy, although I remember that Tali, Ted and I went to a spinning class).  We ate a lot of schnitzel (Orit is an AMAZING cook).  Of course, I am not in Israel and I don't know when I will go next and I always miss my Feingoldim (plural for Feingold).  Instead, Ted and I are getting on a red eye flight tonight to New York to see Auntie Beth run the NY marathon in memory of Max.  She has already raised almost $10,000 and I am sure that by the time the weekend is over, she will have surpassed that goal.  Truly amazing.  We are blessed to have so many family and friends who have donated to Maxie's Forest, Beth's run, and who have bought Team Maxie t-shirts.  We know that you support us and our boy and it means the world to us.
I wanted to mentioned some people who I don't really know who have gone above and beyond to support Team Maxie.  David Eisenberg is a JNF board member from Boston who I have never actually met.  He is the chairman of Team JNF for the Israel Ride (which officially begins on Tuesday).  Even though we have only ever emailed and talked on the phone, I instantly liked him and loved his enthusiasm for the Israel Ride, which he does every year.  The Ride has tremendous meaning for David as he does it in memory of his step father, with whom he shared a very special relationship.  Several weeks ago, I sent David an email saying that I was sorry that I fell off the earth.  He responded by saying that I didn't fall off the earth, that the earth fell out from under me.  He wrote me again a few days later to tell me that although he had already reached his fundraising goal for the ride, he wanted to do something extra in memory of Max.  He promised to plant another tree in Maxie's Forest for anyone else who contributed towards his Israel Ride and he sent out a letter to all of his contacts.  Again, when I said something about the Jewish community, I was totally generalizing and there are many people like David who have been incredibly supportive.  Thank you David.  We wish a very safe journey for you next week and we will be thinking about you!
I also wanted to mention Melissa Rossi and Jenny Romanowski, two women from CT that I have never met.  I believe that they both live in Fairfield, where Ted grew up.  They have been sending encouraging words for weeks and posting information about Maxie's Forest and Beth's run.  Jenny even wrote me this morning to tell me that her 8 year old wants to take on Maxie's Forest as her class service award project (I'm not sure what that is, but it sounds great).  These two women were strangers to us and yet they have put themselves out there on our baby's behalf.  It is so encouraging and gives me so much hope.  I know that I can't trust the world we live in at all, but that I can still put faith in our own humanity is beautiful.
My new friend Kimberly Birbrower who I have also never met but found me through Bianca who posted my blog on a mommy Yahoo user group.  She is the one that set me up with my other new friend down the street who lost her beautiful baby girl to SIDS three and a half years ago and who has given me so much hope.  Kimberly sent me a children's book right after Maxie died about reincarnation featuring an old man from Tibet and written by a Jew.  I love it and can't wait to read it to our future children.  Maybe it will spur some memories in one of our little ones about previous lives we may have all shared together (you know I am getting into that stuff, so why fight it?)
Some people I do know and wanted to mention as well (and if I don't get to you today, I hope to soon!).  My friend Sigal Reingold who I met when she was Sigal Eitan and we lived in Haifa.  She always treated me like a sister and gave me her apartment to live in, was my designated driver for a full year at least and accompanied me on so many crazy adventures (was thinking about your crazy roommate recently, Sig, that used to steal stuff from you and even scaled the walls to get into your room.  Desperado...you must have had some good stuff in there).  Sigal sent Ted and I the most creative keychains in memory of Maxie.  They both had a piece of wood from Mount Carmel (where you got that, I don't know).  Mine also has a little bottle cap with the map of Quepos/Manuel Antonio, Costa Rica (where our house is) in it, a little silver heart, a bunch of lucky pennies....one with Ted and my wedding date in it, and a token that says "My Little Monkey" and has Maxie's birthdate on it.  I love it.  It is such a wonderful summary of our love.
I also wanted to mention my friend Suzy and her family.  Suzy's father is Palestinian, born in Jaffa, who was not able to return to his home after 1948.  Their family have always welcomed me to family parties and celebrations (in fact, we brought a two and a half month old Maxie over there for Christmas Eve last year).  They came for Shiva, they sent Suzy with little gifts for me, and they (including Suzy's cousins) donated trees to Maxie's Forest.  I think that speaks volumes about their characters.
Truthfully, I could go on and on about people who have shown us incredible kindness (including every single person who donated even one tree in Max's memory) but I did want to write a little about my baby today because I miss him so much.  Every day Ted and I are scared that we are going to forget little details about Maxie, his character and his little idiosyncrasies.  As his mother, I still feel like it is my job to fight for him.  Even though I couldn't save his life, it is my job to preserve his memory and to make sure that he lives on through us.  We were trying to teach him sign language and only used a hand full of words and phrases with him: more, milk, all done and I love you.  We started I love you very early on and I think it was the only one that he really recognized.  Whenever we gave him the "I love you" sign, he smiled extra big.  I know I said that he smiled all of the time, which he did, but he would break out into a new smile or really get a bigger one when we said "I love you" with the sign.  He knew it, I know it.  I am not sure when he would have started to be able to sign "I love you" back to us but his recognition of our words and hands and the reaction he would have was sign enough for me to know that he loved us back too.  Sometimes I just do the sign into the air, hoping that Max is nearby to know how much I still love him.  I still love him more and more every day.  My medium friend says that he is nearby.  My more religious friends and family say that he is in heaven.  Wherever he is, I hope he can see how our love for him dictates nearly every move we make and that just because he isn't here doesn't mean that our love for him has lessened at all.
So, wish Auntie Beth luck and support Team Maxie: support.jnf.org/goto/teammaxie

Explanations

Yesterday I posted a bunch of poems.  It was kind of a cop out, although I think I get to set the rules here, so that is good.  I posted the poems because I was way too sad to write anything and I just wasn't in the mood to give "Anonymous" or anyone like him/her anymore ammunition.  Anonymous (and probably others) think I am borderline suicidal (his/her words, not mine).  Yesterday I was feeling like I wanted to die.  It isn't the same as wanting to kill yourself.  I often feel like I want to die.  I don't plan how to kill myself.  If you don't know the difference, you just have to believe me that there is a big one.  You see, my doctor told me that I would ovulate again this cycle and that I could try to get pregnant.  So I have been using a fertility monitor.  I wake up every morning and test my fertility and it has been registering as "high" for more than a week.  I need it to register "peak" fertility and it never does.  For some reason, I really thought it would yesterday and getting yet another "high" was just so disappointing (by the way, just tested again and feeling much less surprised to have received another "high".  Should I even expect my luck to change around?  I was and now I feel silly).  I guess "peak" means you are ovulating.  "High" just warns you that "peak" might be coming.  Whatever.  The point is that my whole day is ruined before it even begins and guess what?  It is already ruined from the second I wake up because Max is gone.  I just woke up from such a terrible dream (but not really much different from the dreams I have every single night).  I dreamt that Max was very sick and had been that way for a while.  My mom and I decided to run out shopping for a little bit and we left Max with I don't know who.  Anyway, while we were out I realized that I hadn't breastfed Max in days, like I just forgot to and I told my mom this.  She said that was terrible on his little immune system, and that I should know that.  I said that I simply just forgot and I was feeling terrible.  Then she said, "Well, you know Max is dying anyway".  Just another dream that is not as bad as reality.  I have been feeling terrible about introducing formula to him at the beginning of month 8, even though I know some people introduce formula much earlier.  Hell, some people exclusively feed their babies formula and their babies live.  But it is one more thing I did leading up his death for which I cannot forgive myself.  I also used fabric softener a couple of times.  I can't imagine that there aren't babies out there wearing clothes with fabric softener but I knew that I shouldn't use it and I did it anyway.  It makes me sick.  I miss him so much, I can't imagine one more day without him.
I have to say a few things I did right.  I made almost all of his food myself, cooking and pureeing yams, butternut squash, peas, carrots, and little baby recipes from my "Baby's first foods" books.  I had a bunch of frozen breastmilk (so much so that we ended up donating it to a mother who could not breastfeed her child) and so he kept getting breastmilk even if I had stopped breastfeeding him (I stopped because he wouldn't take it from me anymore.  I really tried to keep it going).  I put him to bed in a sleepsack, in a crib with nothing in it, just a fitted sheet, and I watched the temperature in his room to make sure it never got too high or too low.  I don't know....I feel like I did lots of things right.  I loved him with all of my heart and soul....does that count for anything?  Yes, anonymous, sometimes I want to just give up.  Yesterday, I woke up and took some Tylenol PM (a regular dose before anyone gets crazy) with a plan of just sleeping the whole day away.  I woke up around 2pm and my new Medium friend texted me about something she was watching on Oprah (yes, I have successfully made her my friend...so there is good news.  I can still make friends even though I am a nightmare).  I actually thought Oprah was off the air, maybe it was a re-run.  Also, I have to admit something...I don't really like Oprah, but I put it on anyway.  It was depressing.  About women who have lost children.  And, it didn't give me the hope to go on or anything.  But, I did realize I was hungry.  It woke me up enough to realize that I wanted to get out of bed to get something to eat.  Then my friend Stacy came by to bring me an early birthday present.  Then my friend Marla came over to hang out.  Then it was dinner time.  Then we went to sleep.  So, I got through that day, just barely.
I haven't written about my Maxie in a while and I promise to do that again soon.  My intention for this blog was for it to be a space both about remembering Maxie and to chronicle our grief (mostly mine, since I can't really accurately chronicle Ted's) since losing him.  I think that so far I have done both but I have definitely written more lately about the grief than about my beautiful boy.  I was going to write about him today but there is something else that I wanted to say today and that is that I feel bad about my sweeping generalization about the lack of support from the Jewish community.  There have been individuals inside the community that have totally taken my breath away.  While I am disappointed to not be hearing from many of the people that I thought I was close to, I have heard from some of them often.  I have also heard from certain individuals who I was never close to, some I have never even met.  And, I have no idea if the community even knows about my loss.  I guess that is one of the things that I think is so weird.  Has nobody told anyone about my loss?  It's not that I am super important person, but I am an individual who has been working in this community for over 15 years and the unspeakable happened to my family.  Maybe SIDS isn't a very Jewish thing to happen?  Kind of like alcoholism or suicide?  Not sure.  Still, I have a colleague in San Francisco, whom I have never met, who has been checking in and has sent some very thought provoking and sincere emails to me, which I have really appreciated.  I have another colleague in Israel, whom I have only "met" by email, who has also been beyond kind to me...emailing me personally and posting comments on my blog.  I have a few colleagues around the country who have posted nice comments on my facebook page and sent an occasional email to let me know that they are thinking about me.  I have a former boss who has been in touch with me, checking in from time to time.  I have already mentioned my CEO, who has been truly wonderful, considering how useless I am.  I also have a donor who emails me several times a week with "Chai" (life) in the subject of her email and "Thinking about you" in the body of the email.   I shouldn't have made the generalization.  These people have been wonderful, and, of course, I have lots of Jewish friends....but they are just friends who happen to be Jewish.  I don't really consider them to be part of the established Jewish community (since most of them are not).  I wasn't referring to individuals so much as the "institution" of the community, if that even makes sense.  Not sure if that clears it up, but I thought I would give it a try.  I am still disappointed so I won't even pretend that I am not.  I am finding a new community...maybe that is part of the finding a "new normal" that people keep telling me about.  And, as I have mentioned, I have even made a few new friends.  I was on the phone with one a week or two ago and telling her how some of my very best friends have no idea what to say to me and how it amazed me that she interacted with me with complete ease.  Her response made lots of sense.  She said that those people knew me before and when they are with me now, they are with a person who they see has changed and they are not used to that change.  She never really knew me before, so she has nothing to compare me to, and she likes who I am now.  I love that.  I know there will always be people who liked the old Abby better and right now I am one of them.  But, it is nice to know that there will be people who come along that never even knew the old Abby and that the new Abby is likeable enough to make friends too.  Phew.

Day of the Dead Poems - courtesy of Prima Sharon

What is Death?

What is death? It is the glass of life broken into a 
thousand pieces, where the soul disperses like 
perfume from a flask, into the silence of the eternal 
night.

Unknown Author

Message in Colors

Lit candles. Faces. Memories
and an entrance that's a rainbow: protection for the place
of rest and meditation.
Necklaces. Cempasuchitl, pre-Hispanic links, songs,
paper medals, flames talking to the wind
the diverse language departed. 
It is the prime time of the celebration
or death's thread, threaded
through time's needle.
It is the decomposition of matter, transformed into art.
It is the final curtain awaken from death in *Ocotepec.
Yes. An eternal dream of uncorrupt flowers and of 
gibberish.
It is death's lament, fading away
and it is also the respect made a tribute.
Who could have imagined so much beauty on a tomb?
Mole. Glass of water. Copal. Salt. Prayers.
Firecrackers. Fruits. Bread. Music.
Corridos. Bolas. Romantic songs.
History, praised. Creativity, expressed
in its most raw form...
And it is the color purple, elegies in white, blue, pink.
It is a blow from grace so heightened as artificial fire
that reveals the soul's presence in the darkness.
Something like the flowering of martyrdon in flames.
An arrangement for the end or the posthumous splendor.
In Morelos everything is possible
gloom battles with life and its victor,
it is once again for a little which, happiness, live tradition
which overcomes reality.
It was before these ornate gravesites, when I knew
that in *Ocotepec, as in my heart, 
those that have departed return every year to remind us of 
their love.
And that only LOVE can save us.

Julie Sopetran

*Ocotepec is a small town to the north of the city of Cuernavaca

The Invitation

It doesn't interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain!I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.

I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.

I want to know if you can see beauty even when it's not pretty, every day,and if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the full moon, “Yes!”

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

by
Oriah Mountain Dreamer
copyright © 1999 by Oriah Mountain Dreamer.

Halloween

Holy Cow!  Yesterday was rough!  Let me start by saying how much I LOVE Halloween.  I love Day of the Dead, so it shouldn't be surprising.  I don't love it for the adult parties, booze and witty costumes, though that is definitely fun too.  I love it because I love children and I love handing out candy and seeing them all so cute in their costumes.  When Ted and I first moved to our house, it was one of the things I was most excited about.  I had my own house, with the most perfect candy handing-out front door.  The top opens separate from the bottom so you can hand it out over a counter of sorts and rest the bowl on the little ledge on the inside, and you don't have to worry about the dogs running into the street or scaring the kiddies away.  It is awesome (good for when you order in delivery food too).  I was so happy that Max was an October baby and was here in time for Halloween last year.  Ted and I have a long standing pact, because I hate horror movies (they scare me).  Halloween is the one day a year that he is allowed to pick as scary of a movie as he wants, and I have to watch it.  Last year, Suzy and Spencer came over to hand out candy.  Little Max was only 3 weeks old.  I didn't dress him up because he was much too busy sleeping, pooping, nursing and being cute.  I was psyched to get him a costume this year - it was going to be a monkey, obviously!  So, I sort of knew that yesterday would suck.  I had no idea how badly it would suck or that Ted might even be more upset than I was.  At around 5, I prepared the house by turning off all of the lights and hiding in my bedroom.  I ignored all of barking, signaling me that there were people approaching.  I laid on my bed and cried.  Ted got home around 6:30.  He came in the house and didn't turn on the lights.  I could see later that he had opened the mail in the dark.  He came into the bedroom looking miserable.  He had to drive home from work through the streets, past all of the children dressed in their adorable costumes.  I said, "This is terrible, isn't it?" and he said, "Should we cancel dinner?"  All we wanted to do was lay in bed and cry.  But, our friend Erika had made a dinner special for us.  She signed up for Halloween duty on the meal train and when I contacted her over a month ago to tell her not to bother, that I had a feeling Ted and I would be too depressed to even eat dinner, she suggested that we come to her house.  On any other night, I would have said no, because I am terrible dinner company (ask my mother.  I usually end up on her couch, in tears, staring at the revolving digital frame she has with photos of Maxie).  Erika said that she and Ian never gets trick or treaters at their apartment on Hillhurst.  Sounded like a plan.  We decided to go over there last night and I am so glad we did.  It gave us something to do other than laying in bed crying.  Of course I have a "hangover" today.  I don't drink anymore but now I get these terrible "sad" hangovers.  They feel a lot like alcohol hangovers.  I am overly tired.  My head is pounding.  I feel completely blue.  I am nauseous.  Most everything that was once good in my life, is now terrible.  Thank God for Ted or I don't know where I would be right now.  Several times yesterday, I found myself wondering if life will always be this miserable, if we will ever be happy again, if will we have more children, if we will ever welcome Halloween..... then I brought myself back to the one moment at a time and just breathed.  It really is the only thing that works.

This is a little Halloween onesie that Erika got Max for Halloween last year.

This photo was taken months later.  The little monster glows in the dark.

By the way, you may have noticed that I am not using the G-D anymore for writing God.  It is a Jewish thing.  I was doing it out of respect to the readers that I might have in the Jewish community.  I have come to realize that there are very few (if any) readers from my community.  Not to say that I have very few Jewish readers, but I know that I have very few readers from the established Jewish community (Jewish communal professionals, Lay leaders, and donors).  While many showed up at Shiva, I have heard from very few of them since that time.  I have worked in the community in one form or another since 1995.  It has been my life's work up until this point.  Not because I am a religious person at all but because I liked being part of a community.  And, when things were good in my life, this community embraced me.  My colleagues (both in my organization and in others that I have worked with through the years) sought me out for gossip and advice and support.  I have hardly heard from these people since Max died.  There are some people that I haven't heard from at all.  People I would have expected to hear from considering that I worked very closely with them, had developed relationships with them, had been supportive of them when they received awards or had simchas (joyful events) or even sadness or death in their families.  One of my donors told me when I met him that everyone likes you when things are going well, but that he experienced that when things had taken a down turn for him, all of his best buddies from the community disappeared.  I don't really say this to express anger but it is certainly disappointing and I am definitely not going to dance around anyone anymore and worry about the language I use.  One thing is for sure - you learn a lot about people when tragedy strikes.  A lot of it is good.  And, so much of that comes from unexpected places.  It isn't all good though and some of it is very disappointing.  And that is just one more lesson that I wish I had never had to learn.  I liked my rose colored glasses just fine.