Wallowing in My Misery

Losing anyone close is absolutely terrible.  It can be earth shattering.  From what I understand (and believe) losing a child is probably the very worst thing that a person could go through.  This little person was the best thing in my life, the person that I knew would outlive me, that I would get to go through the rest of my life with.  I was (and am) madly in love with him.  There isn't one second that goes by that I am not thinking about him.  It is totally consuming.  Here is the thing - I know that I am wallowing in my misery and there isn't anything I can do about it.  My world has been rocked so hard that I fear I may never recover.  My arms feel empty and my chest is tight and I am sad sad sad....all day long.  

For Max:

You are my Sunshine

My only Sunshine

You make me happy, when skies are grey

You'll never know dear

How much I love you

Please don't take my sunshine away

The other night dear

When I was sleeping

I dreamed I held you in my arms

When I awoke dear

I was mistaken

So I hung my head and cried..............

Making Max Laugh

I have described Maxie as a very happy boy, always smiling.  Getting Max to laugh took a little effort.  Not a lot, just a little.  The sound of his laugh was so lovely.  My chest hurts thinking about his laugh and I am so sad that we have no videos of Maxie laughing.  We each had our own ways of making Max laugh.  Max sometimes would laugh a little while breastfeeding.  It IS kind of funny if you think about it.  I would be looking into his eyes and he would smile a little, without breaking contact with me, and give a little "u-ha".  The first time we heard of him really laughing was from my mother.  She said that she had been able to make him laugh over and over again.  She was sort of tickling him with a stuffed animal.  A couple of days later, we discovered that squeezing his little thighs made him laugh.  Ted could really get him going.  When I tried, it was hit or miss...it wasn't my "go-to" move.  Tisha, from daycare, would get in his neck and kiss and gnaw on him when he was all bundled up for naps and that always worked for her.  He laughed and laughed.  I ended up with a few tricks up my sleeve too.  I would walk my two fingers up his body really slowly and sing, "YOU ------   ARE -----  MY -----BABY!" and tap his nose.  I would do it over and over until the giggles came.  Another fail proof technique was to lie Max in my bent arms, holding on to him, and then lower him down and up.  It must have been loads of fun, because he really would just laugh and laugh.  He laughed when Ted and I played peek-a-boo and towards the last few months, he really liked when Daddy hung him upside down by his feet for a second or lightly threw him in the air and caught him.  That is how Daddy's and their boys play together - Maxie loved it.   My favorite way to make Maxie laugh was to sometimes take his little hand, while he was nursing or taking a bottle, and stick it in my mouth and gum it up while making munching noises.  He would giggle and give me a "Mommy, you are so silly" look.

These last 6 weeks have been a living hell.  All I want to do is get under the covers in bed and cry but I manage to do many other things.  I feel totally exposed.  I can find no comfort or calm.  There is very little laughter.  I am reminded with every second of every day that I am not a mother anymore and that I will never see Max again and it kills me.  Yesterday, my mom took me to get a foot massage at lunch time.  I did find a moment of peace while listening to the zen music and just relaxing.  I started to think about what Max would want me to do with my life.  I think he would not want me to just crawl into bed and cry every day.  No matter how much I cry, he isn't coming back to me.  I think he would want me to live.  I am not there yet but I found some peace yesterday, if only for a moment, in the idea that Max could be the inspiration for the rest of my life - a reminder to live each day to its fullest, because you never know which is your last.  A reminder to be present with my loved ones, because I never know which day will be their last.  Something to cling to...

Our Future Swimmer

As this blog is meant to be a recording of Maxie's life, I want to make sure that I record as many memories as possible before they begin to fade.  Ted asked me to write about our time with Maxie in the swimming pool.  Pretty much since the time Max was born, we had been looking forward to spending time in the swimming pool with him.  Ted and I are both ex-lifeguards and swimmers and we love being in the water. Our first year together, we trained for and then swam the San Francisco Bay from Alcatraz..."Escape from Alcatraz".  Ted can spend hours in the ocean or a swimming pool, literally, hours.  My mom and dad both have great swimming pools and we were excited to get Max wet and pass on our love for water.
As I have mentioned, Max loved bath time.  Baths were warm and contained.  Sometimes he would just start kicking up water and the more we would laugh, the more he would kick.  Max's first time in a swimming pool was on our trip to Costa Rica.  The pool in CR is cold.  Especially compared to the warm, humid air.  It is crisp.  Ted brought Max into the pool, held him under the arms and lightly moved him around the surface of the water.  Max just looked content.  It wasn't a beaming smile or a kicking excitement, just a pleasant look on his face.  Ted was so happy to be in the pool with his son.

The next swimming pool adventure was months later at my mom's house.  This time, Max cried a little and it was obvious that the water was too cold for him.  I ended up taking him out of the water, wrapping him in a warm towel, sitting on a chair next to the pool with him and singing, "Warm and Cozy, warm and cozy, warm and cozy" in his ear.  My bundle of love.  My arms feel so empty just thinking about it.
Of course we tried again, this time with a little float seat that my friend Bianca gave us.  It was pretty perfect and we stayed right next to him.  It may have been that he felt a little more independent or maybe the pool had warmed up a bit.  Not sure.  But, he was content again.

Ted missed this experience but more than made up for it a week or two later in my father's pool.  Max and Ted had a really great time with cousin Mandy too.

The weekend before Maxie's incident, I took him to my friend Amy's house to visit with my other friends Bianca and Tallie and their kids.  Amy's daughter, Penelope, was born in the same hospital, with the same doctor, two days before Max.  They had an instant chemistry and they had so much fun in the little pool in Amy's front yard.  It was such a fun day for Max, that I will always be grateful for.  It was his first and only real play date.

 
This little boy brightened up every single day.  Seeing his smile, I still smile through my tears.  He is the absolute best thing that ever happened to us.
This past Sunday, Ted spent hours in my mom's pool.  The temperature of the water was in the 80s.  It was like a giant bath.  Max would have loved it.

Cat Naps

I wake up every morning and think "Maxie is dead" and that basically sets the tone for my entire day.  This morning it took 30 seconds before I remembered and then I felt my stomach sink.  Most nights I dream about Max.  The dreams usually have a frantic pace, like a competitive reality television show.  Last night, I dreamt that I had to find all of Max's baby gear, which had been put away all over the place in various lockers around some international destination.  I had to remember which lockers held my baby's stuff before I could get him from daycare.  Somehow, if I showed up without it, he wouldn't be released to me.  So, I ran around, took buses and boats to locations with rooms full of lockers, tried hard to remember which locks were mine, racked my brain for the combinations.  I went to the daycare without having been able to open any of the lockers and tried to beg for Max, but I couldn't even see him there.  So many hoops to jump through every night to get to Max and in the end, I never get him back.  It is making me sick. My life feels totally purposeless without him.  He was the light of my life, my very most important reason for being.

I have been putting off going back to my office, doing my work from home instead.  I had actually been working several days a week from home since Max was born, so it is something that I am not sure if I couldn't continue.  I guess we will see.  I am meeting with my boss this week.  I am not sure if he just wants to check in and see how I am doing or it if this is the moment where he is going to ask me to step up to the plate.  I know that I am not ready.  I have a pretty public job.  The kind of job where, in order to do it well, I need to be "on" all of the time.  I am not "on" any of the time.  My own friends and family feel uncomfortable around me.  I had a friend tell me that she felt bad that our encounter earlier in the week was awkward.  I had to explain to her that everyone's encounters with me are awkward, it wasn't just her.

When Maxie was really little, I used to take little cat naps with him.  There was something about his little face facing mine that was so peaceful and I would drift into sleep, opening one eye every couple of minutes and smiling to myself.  No dreams.  Just lovely time with my baby.  When Max would start to stir, I would wrap my arms around him, breathe him in and kiss his little face all over.  When he got a little bigger, he didn't like napping with me anymore.  I MISS our little cat naps.  I MISS my MAX!

Dear Maxie

Dear Maxie,
My sweet sweet baby.  I miss you every day.  I miss you every second of every day.  I hope you know how much we love you.  How our love for you grew every single day.  I hope you know how proud of you we are.  You must know how blessed we feel that you were ours.
I still cannot believe it is possible that your sweet soul is no longer here on earth.  That you were taken away from us.  That you will never be able to touch the hearts of all of the people you were supposed to meet and change the lives of everyone you were going to encounter.  I am scared that there may be no heaven.  Daddy and I are counting on seeing you there and if it doesn't exist, we will be so heartbroken.  All I know is that as soon as you were born, and every day after, I had a feeling that we had always known each other.  You were meant to be my baby and you were more familiar to me than anyone I have ever known.
Maxie, I feel you with me all of the time.  I dream about you every single night.  I want to hold you in my arms so bad, it hurts.  I would give anything in the world to have you back with me.  I would give my own life if it could have saved yours.  I would do anything for you.  There isn't anything that I wouldn't do.  You were and are the center of my universe.  Without you, I am so lost.
I hope that you are safe and warm and being looked after.  I hope you are getting to know all of the grandparents that Daddy and I have lost.  I hope they are telling you dirty jokes and spending whole days walking up a long hill.  I hope that they are telling you how much you are loved. I hope they have arms wrapped around you and lips pressed against your little face.
Daddy and I miss you so much, Maxie.  Please wait for us.  We love you more than anything in the whole wide world and we are praying that someday we will be a family again.
With all of my heart,
Mommy

Living without Maxie

I am so sad all day long.  My face hangs.  There are dark circles under my eyes.  I wear the same sweat pants whenever I can.  Having to dress in anything more than that takes extreme effort.  I have been smoking.  I can't drink anymore - makes me even more sad.  I look around at his toys and strollers and photos and I picture him.  My heart is so broken.  I can't hold it together.  I miss his little face so much.  I miss cupping his little cheeks in my hands and gnawing on his ears.  I miss kissing him all over.  I miss sitting him up on his changing table after his bath and rubbing his little back with baby lotion.  I am in so much pain I can't think straight.  I miss Maxie so much.
I went to a meeting this week.  I cried all of the way there.  Somehow, I held it together for the meeting and even heard my own voice talking about work stuff.  I felt it was a productive meeting.  That being said, I had my marathon panic attack that day.  Maybe those two things are not at all related.  I am taking baby steps to get back to work but I am aware that eventually, more will be expected of me.  I am having a hard time balancing that reality with my personal reality, which is that I am finding it hard to find the strength to even make conversation with my own family, let alone others.
I feel terrible that my husband comes home every evening to find me in the same state I was in the night before - depressed, lonely, vacant, and missing Max.  He misses Max in an overwhelming and deep way too but we express it differently.  Ted would like more diversions.  I just want to sit on the couch or lie in bed and cry.  Sorry for going back to my sad story.
Let me tell you about my heart.  Max is my heart.  He made me feel more important and content than I have ever felt in my life.  I wanted to be around him all of the time.  He made me feel wonderful about myself and I hope I did the same for him.  He was so snuggly, such a love.  I was happiest with my arms around him and his cheek against my chest.  I can't believe I will never feel that again.  Max was my heart and he still is.  Not sure how I am supposed to live without Max.  I am not myself without Max.  I liked my old self (of 5 weeks ago) so much better than any version before or after he came into my life.

Taking a break from sad stories

Many of you have privately shared your horror stories with me in the last few weeks, as I have been sharing my horror story so publicly with you.  Thank you for trusting me as I have trusted you.  Stories of loss are important to share, especially with those of us who understand the depths of sadness that grief can take us to.  That being said, I need to take a step back now because I have become painfully aware that I am not fully equipped at this time to handle all of this information.  I hope that someday, I will be a wonderful sounding board, but I am way too raw right now.  I am sorry.  I spent about 5 hours yesterday in a full out anxiety attack.  It was exhausting and too much for me to handle.  I started thinking about ALL of the things that could go wrong - infertility, miscarriage, stillbirth, another child's death, another death period, my own death.  I started looking up scary statistics on the internet and freaking myself out.  I have to believe that Ted and I have been given the most we can handle and that there will be so many good things in our future once we come out of this fog.  If I think anything else, I won't make it.  I am actually going to hold off of the group therapy thing until I can handle other people's stories and not make them my own.
I am going to concentrate on good things for a little while.  Like, just remembering my little Max and all of the happiness he brought to me daily.  I love that baby!!!
Maxie had a little bounce when he ate.  He would very contently chew (with his two teeth) his meal while rhythmically bouncing and looking around the room.  He wanted to see where Daddy was, where Jakey and Layla were and just get a general sense of what was going on.  It was CUTE!  I loved feeding Max.  He really enjoyed food - especially bananas.  If I wasn't worried about them constipating him, I could have easily fed him several in a sitting.  He loved them so much.  Kind of makes sense because we called him our little monkey.  Maxie taught me patience.  Meal times were a real practice in patience because he was a slow eater, like his father.  It was about the experience more than the meal.  Perhaps he was European in a past life.  We all enjoyed feeding Maxie and as I mentioned before, he also loved to feed himself.  In the last weeks, his favorite thing to eat were little puffs.  I could cover his tray with them and he would do his best to pick each one up and smash them in his little mouth.  His aim was 50-50.  It was so entertaining.
My mom found a couple of videos that I had never seen.  I have so few videos of Max and there aren't many left that I haven't already posted, so I will just post one of them for now.  This one is right after meal time.  Cousin Sharon makes another appearance.  Since cellular phones are now cameras and video cameras, it is hard to know whether someone is taking your photo or a video and Sharon and I have both fallen for the "still photo pose while being video taped" predicament, which is hilariously funny when it happens to someone else, kind of embarrassing when it happens to you.  Anyway, check out my happy baby.  He was ALWAYS this wonderful.

Auntie Beth

I am so lucky to have a sister in law who is also a best friend.  Someone who I chose and who chose me years before I married her brother.  A friend who shares my sense of humor, my same taste in people and places, someone who actually shares my exact same laugh.  When we start laughing together, the cadence merges and you almost can't tell whose laughter is coming from who.  I love her.  She introduced me to my love.  She is also my husband's very best friend on earth.  His most favorite person to talk to and be with.  She doesn't believe in our use of Splenda or "I can't believe it's not butter, spray", but it is because she is always looking out for our well being.  I really can't say enough about Beth.  She rocks.

Beth is running the NY Marathon on November 6th, the day before my birthday, as part of "Team Maxie".  The only member of "Team Maxie" in fact.  She is raising money for Maxie's Forest.  It means so much to us and I know it means so much to her as well.  You can visit her fundraising page at http://support.jnf.org/goto/teammaxie.  In the meantime, I would like to share what she has written on the page as it is so incredibly beautiful:

The brightest spirit I have ever known, my beloved nephew, Maxwell Judah Leviss, died most unexpectedly, on July 21, 2011, at the age of 9 months. Maxie’s sudden death has sent shockwaves through the many lives he touched in his much too short time on earth; it has taught all of us the real meaning of heart-wrenching sadness. And remarkably, from this tragic event, hundreds of people have been inspired to contribute money in Maxie’s name to plant a forest in Israel, anchoring his sprit to a land his parents love. To date, that forest is 10,000 trees strong and growing.

Not only will Maxie’s forest grow into a beautiful living tribute to one of the sweetest babies ever born, but I hope each tree planted will somehow start to fill the cavernous hole weighing so heavily on my brother Ted’s and Abby’s hearts. Perhaps that hole can eventually be filled with the outpouring of love that offers them both peace and comfort in a time of such unimaginable pain and heartache. 

I will be running the New York City Marathon on November 6th representing “Team Maxie.” It takes only $18 to plant a tree. Plant one tree or twenty, and together we can build a majestic forest to keep Maxie’s spirit alive forever - a piece of posterity, planted to reforest an area near Haifa in northern Israel that was devastated by fire last winter.

Israel is such a significant place to Abby and Ted. It was there that I first met my future sister-in-law. And it was there that almost 15 years later my brother proposed, confirming my master plan of uniting my two most favorite people on the planet.

Abby has created a blog: http://missingmaxie.blogspot.com . Please visit Missing Maxie to get a glimpse of this little boy. You’ll understand how terribly he is missed and how important it is to all of us that we make his memory a living monument.


My goal is to continue building Maxie’s forest as I run the NYC marathon on November 6th for the first time ever, lovingly and proudly representing “Team Maxie”.

Your support would be so welcome. Thank you!
Beth Gardner


*By the way, if anyone reading this contributed to our fundraising page and accidentally put Max's name in the recognition section instead of their own, please let me know and I will see to having it corrected.  It was a little confusing and I apologize.  You should know that I do receive a back end email that alerts me when a donation is made so I am aware of your generosity.  

Over it....

What is your worst fear?  The thing that, if it happened, would ruin your life?  Just the very idea of this thing happening is too much to even think about.  It will never happen to you so you don't need to think about it.  It happened to me!  Somehow I am still struggling with people who think that I need to move on. I hope this will be the last time that I write about this.  Really.  If it makes you happy to know, I am seeing a grief counselor, a Licensed Clinical Social Worker.  She has an office, next to a hospital.  She works with the families of terminally ill children.  She knows that what I am feeling is "normal" for someone who has been through what I have been through.  Other people who have been where I have been ASSURE me that the advice of "getting over it" or "moving forward" is well meaning but that I should ignore it as best I can because they do not know.  You all do not know.  Understand me.  Believe me.  You think you know and you think you are trying to give me advice that is in my best interest.  YOU DO NOT KNOW.  Anyone who has been as unfortunate as us to actually know, would never give this advice.  I am not responding to it anymore.  I will not let it upset me more than I am already upset.  It is too much.

Dragging On...

Each day I wake up horrified (no longer shocked, but still horrified) and then I spend all day long waiting for the day to end.  So, here I am at the end of the day and I am horrified that this terrible day is not ending.  Today was a very hard day for me.  I felt tortured all day long.  I was anxious all day long.  I am scared that something is going to happen to me or someone I love.  Once you recognize how vulnerable you really are, you sort of wonder how you even made it this far.  Now, I have been lying in bed and tossing and turning for about 2 hours and I am wide awake, horrified.

Maxie's Helmet

Maxie came to me in a vision on Monday, brought on by a hypnotherapist.  Cynthia is someone I saw a couple of years ago when I was being plagued by a bunch of issues surrounding an apartment building that was left to my brother, cousins and I by our grandparents.  The apartment building was a place I lived in for several years in my 20s and my brother also lived in.  Ted and I took over the management for a brief period and I was harassed daily by one of my cousins about it.  The issue kept me up at night and made me sick during the day.  Cynthia helped me get clarity about how to get myself out of the situation.  I like hypnotherapy because you don't have to do a lot of talking to get to the crux of the issue.  You are in a sleep like state and the outside world just goes away for a little bit.  You can see things more clearly and make decisions a little easier.  As I wrote, I had a very powerful experience last week when Maxie came back to me in a dream and I could actually feel his spirit.  So, I went back to Cynthia to help me conjure him up again.  I don't care if it is really his spirit or if it is just a way for me to feel closer to Max. I need to be with him.
I went up up up in the sky and arrived at a beautiful cloud filled space. Cynthia asked me to envision a wise person there - in this vision, the part was played by my grandfather, Jack, a man who loved me unconditionally and to whom I had an extremely close bond (and who I still miss every single day).  Grandpa Jack told me that Maxie was there with him and he went through a cloud-like door and came back with Max in his arms.  Maxie was wearing his little helmet, covered with stickers that Ted lovingly spent hours picking out and arranging perfectly.  He had a little grin on his face and was chewing on his little fists.  I started crying and said "Maxie, I love you so much...why did you leave me?" and he answered "I love you mommy".  I cried, "are you coming back to me?" and he answered, "I love you mommy."  I said, "Don't ever leave me again Maxie!" and he answered, "I won't!  I love you mommy." 
It was strange to me that he was wearing the helmet.  Cynthia suggested that perhaps it was  reminder of how much we cared for him.  How we spent so much time and energy in our love for him.  When Maxie was a newborn, I didn't think much of the fact that his head was a little flat on one side.  He was vacuumed out of me, came through the birth canal...the doctors told me that lots of babies have misshaped heads after birth that end up rounding out on their own.  After 6 weeks, his head didn't seem to be rounding out and he was always looking left, so I asked the pediatrician about it.  Max's pediatrician suggested we go for a consultation at Cranial Technologies for a Doc Band (or helmet).  Indeed, at 3 months old, Max was put in the helmet and after only 6 weeks in it, his whole head was rounded out.  The truth is that he looked SO CUTE in the helmet and he was such a good boy about it.  They told us that the Doc Band actually helps prevent SIDS in that it creates a breathing space for the baby even if he/she were to roll over on their tummies.  Max was too young then to roll on to his tummy anyway and was actually sleeping half of the nights in his swing.  Across the front of Max's helmet, Ted stuck "MAD MAX".  Just like with the tattoo, I worried that the Jews would get mad.  After all, Mel Gibson starred in that movie and he doesn't like us....AT ALL.  Ted, never caring about what people think, assured me that nobody would care.  The funniest thing that happened was when we brought Max to Costa Rica with us while he was in the helmet stage.  A few of the other people on the plane thought it was cute that we put our baby in a helmet to protect him during the flight.  Actually, explaining the helmet to my Costa Rican friends was somewhat futile.  It probably just seemed like another crazy American thing to do.  Regardless, I knew that Max would grow up and thank us for it and even if he didn't, the photos would look awesome enlarged on his bar mitzvah poster for people to sign (do kids still even do that?) I saw another baby in a Doc Band at breakfast the other day and my heart broke.  I miss him so much and I see him everywhere, all of the time, and yet I do not feel him as easily as I would like to. I struggle daily to bring him back, knowing that will never really be possible.

DARK

I have been hearing that some people feel my blog has become too dark.  That I sound too depressed, too sad.  They want me to stop my fall before I go too deep.  Pull myself up by my bootstraps.  Move forward for the sake of everyone else.  But, here is the thing about MY blog, YOU can stop reading it whenever you want. There are a few people that I have encountered who have experienced a similar loss or know someone who has.  Those people have written to tell me that they know this phase I am in.  They remember it, in some cases, even if the event was long ago, still experience the phase for a day or two around anniversaries, birthdays, Yarzheits, and other unexpected moments.  Grief is a process, people.  There are stages that people go through.  I am in a particularly dark one.  I hope to come out on the other side but I don't know if that will be in a couple of months or a couple of years.  I don't want to be here anymore than you want me to be here...but again, I JUST GOT HERE!  Just over five weeks ago, I was with Max, loving him, bathing him, singing to him, feeding him, playing with him.  When you get over the death of your child in five weeks, let me know how you did it.
Last night Ted and I received the bill from the PICU for Max's stay.  $126, 215.  The number is staggering.  My father, an ERISA lawyer has assured me that it was not a bill stating what we owed.  It was just a bill stating the costs of everything.  $126,000 to NOT save my baby's life.  To NOT know what happened to him.  Now does someone want to explain to me again why they don't believe in the idea of universal healthcare?  (I don't really want to have a political debate with you.....by the way!)  Seeing that number took Ted and my collective breaths away.  Ted actually looked at me and asked, "Why are we being tested in this way?" and then under his breath "I would give my right arm...."  I couldn't hear the rest.  It was Ted now asking a question that I have been asking myself.  What is the lesson in all of this?
Speaking of right arms, dark places, and handling grief......Ted is dealing with the grief in his own way and it is a day by day process.  Last weekend, we went to Studio City Tattoo and Ted had Maxie's name and birthdate engraved on his right forearm for good.  We talked about it beforehand.  I reminded him that older Jewish people would approach him and tell him how terrible it was that he would get a tattoo and that he wouldn't be able to buried in a Jewish Cemetery (Bullshit, by the way, and there are MANY interpretations of Tattoos in the Jewish tradition: Skin Deep - Hey, Mom, the Rabbi Approved My Tattoo - NYTimes.com).  That strangers would always ask him who Maxie is.  He doesn't care. He wants them to.  (As a side note, I bet it would be a refreshing change of pace from all of the people who DO NOT ask us about Maxie).  I love the tattoo.  It is intense.  It cannot be ignored.  And, it is my son's name.  The most perfect name we could think of for our perfect child.  It isn't just some "STAAM" (Israelis...help me out...there is no English equivalent of this word) or meaningless tattoo of his fraternity letters or a panther or some made up sanskrit lettering meaning "I am a chump".  It is our heart, as Maxie IS our heart.  I will say this though, I caught a glimpse of us on Saturday night and thought for several moments how sad it is who we have become in such a short time.  A grieving father with a new tattoo and beard.  A hopeless mother with no makeup, no smile.  We looked hard.  Only Max has ever unleashed emotions this deep in either of us - the most intense of loves, the most painful sorrow.  Maxie is right next to Ted all of the time now in the only way possible for us.  Ted will be asked about Maxie for the rest of his life and he will tell the story of his little right hand man.  The little boy that was supposed to be sitting on the couch next him, rooting for the Giants with Daddy.

Jealousy, Anger and Fear

The last two mornings I have woken up and not felt shock.  I have awoken with the knowledge that I am the mother of a child who is no longer here.  That in itself is shocking to be quite frank.  It breaks my heart that I am entering an acceptance phase.  That now, this is just something I have to accept.  I am not going so easy and am bringing some ugly emotions into the phase with me.
Last night we ordered Chinese food for dinner.  My fortune cookie said "You have a kind heart and a generous spirit".  I am in an ugly place.  Full of jealousy and rage.  People have told me that our experience has made them recognize their many blessings.  That they hug their children a little tighter.  Someday I will be glad for that.  Right now, I am jealous and angry.
Leaving my bubble is frightening and makes me anxious.  We had to go to the mall this weekend to get me a new iPhone because in the middle of all this, mine just stopped working.  The Glendale Galleria is buzzing with families and strollers.  I felt claustrophobic.  Afterwards, we took our dogs to the beach at Bellmont Shores, so they could run around with other dogs.  Little children playing in the sand.  Babies sitting on their mommy's laps on beach towels.  All too totally overwhelming.  A world without my Max feels so empty.  I see parents berating their children who want another piece of candy and I want to run up to them and scream, "Do you know how lucky you are to have a child who wants what every child wants?"
Max still hasn't shown up in my dream with something for me.  He showed up Saturday night, just not alive.  In the dream, I had placed him in the care of one of my colleagues and then when I went to get him, I was told he had died in a very casual way.  I am still reliving shock while I sleep.
I am angry about the times I had to ignore him to get things done.  My little Max was so patient generally but would get crazy when I was on the phone or somehow not focused on him.  Like a work call I  had during his regular bath time about whether or not to have an open bar at a fundraising event where we didn't charge enough to justify an open bar.  I put Max in his exersaucer and he was unhappy, howling for my attention.  I put him in the jumperoo, more of the same.  Finally I picked him up, sat him on my lap and flipped through his favorite books slowly enough so that he could look through the pictures.  All he wanted was to be with me.  Once I figured out what he wanted, he was easy to please and I was so grateful for that.
I still have baby weight to lose, which is another kick in my pants.  It is terrible putting on clothes that I wore while I was pregnant - maternity shorts and dresses, not just because it has taken so long to lose this weight but because they are a reminder of the excitement I had in anticipation of his arrival.  Also, I have such conflicted feelings about the fact that I wasted (and continue) to waste so much time worrying about the weight.  The weight came because Max came.  He was worth every pound.
A friend from my very brief career in real estate sent my mom and I each a book that validates so many of these feelings that I have.  It is called, "A Time to Grieve: Meditations for Healing After the Death of a Loved One".  The meditations are on each of the very real feelings that people have during grief and in one of three stages: Retreating, Working Through, and Resolving.  One that I bookmarked says "Being in public takes its toll".  The quote on the page says, "When one is pretending, the entire body revolts - Anais Nin".  The page says, "As we attempt to return to our jobs or our social life, or just to leave the house to do errands, we may feel that we must hold our heads up and keep acting brave.  So we talk about things that don't interest us instead of talking about what plagues our heart and mind.  We reluctantly agree to do things in which we do not have the slightest bit of interest".  I am planning to venture out a little this week.  If you see me, you might guess that my heart isn't completely in it but that doesn't mean I don't care.  I am just working through this terrible loss and I am only at the beginning of a new stage of grief...one that seems full of disinterest, jealousy, anger and fear.  Another page in the book that I bookmarked says, "Don't expect me to be over it".  The quote says "Tears may be dried up, but the heart - never".  My tears have not yet dried, but my sadly, heart feels like it has.

Walking to daycare

The healer said that Max would come to me in a dream on Friday night and bring me something.  She told me to pay attention to what he was going to give me.  I thought a subliminal message was being planted that couldn't fail, but it is early Sunday morning he hasn't come yet, and I am going crazy.  I need to see him.  The last two days have been DARK.  I can't even write down where my mind has been because it is too dark to put on "paper".  I am unimaginably sad.  My whole body is cold with shivers and I keep thinking that there is NO WAY that I will make it.  Ted doesn't even really want to be around me.  He won't admit it but I know.  He did admit, however, that he HATES when I ask "why us?" or "why Maxie?".  He doesn't have answers so he wishes I would just STOP asking the questions.

It takes exactly 15 minutes to walk to daycare from our house and exactly 20 minutes for me to drive to my office which gave me plenty of time to do one of my favorite things.  I LOVED walking Max to daycare even though the sun did NOT cooperate.  I still mostly used his Graco snugride stroller in the mornings so that I could just "snap in" the carseat on the way home if I didn't have time to go home, park and walk back for him after work.  The good part about the snugride is that Max faced me on the walk, but that bad part about daycare is that it is West of our house, which means that the sun was behind me both on the way to daycare and on the way home.  On the way there, I would put down the visor and give him a toy (usually his monkey) and talk to him, even though I couldn't see him.  Whenever we would pass through the shadow of a tree or building, I would pull the visor up for a moment so I could glance at his beautiful face and smile at him.  "Maxie!!!!", I would look at him and say with a high pitch in my voice.  He would smile back at me.  The way home was a little more cooperative.  The sun was still behind me, setting in the West, but the angle made it possible for me to cast my own shadow on Max if I stood to the side of his stroller a little bit while walking.  On the way to daycare, we usually just would take Riverside Drive and pass all of the usual landmarks....Viva Fresh, Pickwick Bowl, The Riverside Cafe, the park and then finally arrive at daycare.  On the way home, I would take the residential street just South of Riverside Drive until the Condo complex and walk right down the middle of the street, usually having the whole thing to myself, only rarely having a car or horse pass us in the road.  30 minutes of baby and me time at least 2-3 times a week.  Pure bliss.
I have to pass daycare and all of these landmarks every single time I go West.  The only way around it is to go up Alameda and then I have to pass St. Joseph's, which is almost worse.  At least I can associate daycare with some of the honeymoon bliss I had.  Every time I drive by, I slow down, expecting to see Max in the front yard.  Ted slows down too.  Not sure if he is expecting the same.
Every single breath of every single day is complete torture.  I am in a hole that I can't see ever climbing out of but the idea of having to do this every day for the rest of my life it unbearable.  I am not going anywhere because I never want my parents to feel the pain for me that I feel for Maxie and I am not that selfish but I would give anything to take a really long nap.  I have always loved sleeping and have joked about wanting to invent a pill that would allow humans to hibernate for the winter.  Ted could take the dogs to the park and do yard work without having to see my grieving face.  My mom could wake up on the right side of the bed without having me show up to ruin the whole day.  My dad and stepmother could come over for dinner to reminisce about good times without sitting down to watch me cry.  If you think when you read this blog that you are reading the words of someone "strong", YOU ARE WRONG!  I am utterly hopeless, "in a sea of despair", that I don't know how to swim out of (and I AM a very strong swimmer).  It is 4:46 am.  I am going to try to go back to sleep and give Maxie another try to show up in my dream and give me something.

Laws and Prayers

Yesterday Suzy took me to see her acupuncturist who also happens to be a spiritual healer.  She picked me up around lunchtime and we drove to La Crescenta (which isn't nearly as far away as it sounds 101/134/2/210).  I had been in hysterics all morning, hardly able to take a full breath, asking myself all of the same questions: Why my Max?  How am I expected to go on living now?  What went wrong?  Will I ever find any meaning in my life again?  When I walked  into her office, my shoulders started shaking and tears were pouring down my cheeks.  She told me that she wanted to help me achieve some calm.  She asked me a little about Max.  I told her next to nothing, no more than Suzy told her on the phone earlier.  That Max was nine months old, that he stopped breathing at daycare, that they are calling it SIDS for now because that is what they call it when your baby dies and they have no medical explanation for what happened.  She held my feet and looked in my eyes and felt my pain.  Then she told me that Max was not dead, his spirit was very much alive and he was, in fact, in the room with us.  She was having a little conversation with him while he hovered over my right shoulder.  She told me it was his time to go.  That his earthly life had been full of love and happiness.  That he was upset that his dad and I were so sad.  Then she said, "Max is asking about your mother.  He wants to know how your mom is".  I told her that my mother had broken her arm and that it was a really bad break.  She smiled and told us that Max is arranging distractions now for our family.  I guess we can thank Max for Ted's crazy insect sting too.  She confirmed that we can.  She mentioned a few things that stick with me, that even if I think that this was a bunch of nonsense, made me feel better.  She said that Max loved bath time, that a few times the water was too cold, but that he really loved it.  She mentioned a plastic toy, which I had just been telling my mom about that morning, that Max liked to hold.  She also talked about something blue being buried with him - he is wearing his blue Giants football PJs.  For sure it is safe to say that plenty of babies like bath time, plastic toys and blue (pink for girls) but I choose to believe that she had a short encounter with my Max.
Spiritually speaking, I don't know what I believe in really anymore.  Obviously we are Jewish, and there is so much wisdom, love and tradition in Judaism.  Ted and I were fans of The Secret a few years ago.  More like, we are fans of positive thinking, which is all the Law of Attraction really is.  It is praying.  So many of the things I prayed for came to me with time.  I prayed to find a man like Ted.  I prayed for Jake, my dog, to come into my life.  I prayed that my hard work at my job would be recognized.  I prayed for us to be able to buy a house.  Most of all though, I prayed for a happy and healthy family.  I prayed extra hard on Max, that his life would be blessed with all things delightful.  Ted made a beautiful "dream board" with photos of Max and our wedding, and beautiful landscapes and fun activities.  These are some of the things that I know he was visualizing for our future. Whether it was G-d, or the Law of Attraction, or The Secret, or I don't know what- someone or something got the signals mixed up somehow and the thing that was most important to us got left behind.  Now that Max is gone,  I wonder if it is silly to even bother praying for the important things we want for our future.  Is anybody even listening?  Does anyone really care?  The Laws of the Universe took the life of a little baby boy.  Shitty laws.  I think for a while I will just believe whatever I choose to believe.  Whatever makes me feel like I can get a little closer to Max - especially if it means that he is right next to me, hovering above my shoulder and thinking about bath time.

Sorry for Maxie

I am so sorry for myself.  I am so sorry for Ted.  I am sorry for our parents and our friends and the daycare where Maxie went.  Most of all though, I am SO sorry for Maxie.  I am so sorry that he only had nine months to be in this beautiful world, with parents and grandparents who adored him.  I am so sorry for him that he had to go through this.  That he woke up in the morning on the 19th of July and had no idea that by 10:30 am, he would be in an Emergency Room with a heartbeat but no brain function.  I love him so much - I wanted to protect him from all that was evil in this world.  I wanted only happy and good for him.  I feared bullying, and accidents, and the heartbreak that come with life.  I was scared of his eventual drivers license and trips without us.  I was scared about how he would one day handle pear pressure and rejection.  At the end of the day though, I saw a bright and beautiful future for Maxie. I saw friends, school days, summer camp, soccer games, holidays, birthdays, dating, college, love, marriage, children of his own.  I woke up every morning feeling so blessed and excited to be a part of all of it.  What a wonderful thing to be a parent!
I am in a kind of earthly purgatory.  I do not want to be alive anymore but I don't want to die either.  When people ask how I am doing, I often answer that I am just breathing from one day to the next.  I am literally breathing, hoping that the days end will come soon, so I can be done with it. Each day is a complete eternity. Each morning is a punch in the gut.  I am back at work, but working from home.  I love my job and find our mission incredibly meaningful, but the day to day tasks of a job seem incredibly meaningless in the big picture right now.  I am doing the best I can.  I am struck every single morning by the fact that Max is not here anymore and it takes my breath away.  My life feels without meaning at all.  But, here I am again, feeling sorry for myself.
Max was my everything.  My whole life revolved around him and I feel bitter and cheated now about every minute that I was not with him.  He was lucky to have had so many people who loved him but how can I ever say Max was lucky?  Max got a raw deal!  Max was cheated from a beautiful and full life.  Max was given so many outstanding qualities - he was cute and smart and personable and easy and sociable - for what?!!!!!  So he could die?  My heart hurts so much for him.  We are all supposed to go on with life like this didn't happen and I try at times but I am pulled back completely in an instant to the horror of it all.  Of losing my boy, my most precious person.
I keep thinking about this party on a rooftop in downtown LA that I went to in my 20s.  We had a friend who lived in an old hotel, in the penthouse apartment, with a few other people and giant pig for a pet.  They used to throw crazy parties and we would all end up on the roof.  At one of those parties, a guy fell off the roof and died.  The party went on for about an hour as the rumor spread that a guy had fallen off the roof.  It was hard to tell if it was real or just a  made up prank.  Sure enough, the cops showed up and they told everyone not to leave.  They wanted to talk to as many people as they could for their investigation.  So, everyone stayed and kept on drinking and hanging out.  It was like the same party we were at before the guy died.  None of my friends or friends of friends knew the guy and we all were horrified, but still at this party and not allowed to leave.  Certainly, the mood became more subdued, but people were still drinking and playing with the pig and flirting and gossiping.  There was a small crowd of the guy's friends who were still on the roof (the rest of us had come inside) and I could see that they were panicked and hysterical.  Most specifically, the dead man's girlfriend, was completely beside herself.  She could not be consoled.  For months afterward, I was haunted by the thought of the guy and the his girlfriend.  They got ready to go out that night, thinking it would be a great party, never having the slightest clue that it would be for him, his last night on earth and for her, the worst night of her life.  It horrified me that the rest of us just kept going on, business as usual, while she was experiencing the most terrible tragedy I could ever imagine at that time.
Today is the month anniversary of Max's "incident".  The day he stopped breathing.  The worst day of my life.  I would give my own life for Max to come back and be able to live his own.  I loved Max more than anything in the world.  I cannot go on like nothing happened.  My life is not business as usual. I am not one of the party goers on the inside of the penthouse.  I AM ON THE ROOF!  I am the mommy!  I am Max's mommy and my life will never be the same again.  Today, I am in hell.  Tomorrow, if I am lucky, I might be back in purgatory.

Grandparents

 Grandma Susanna reading Maxie "Runaway Bunny"

Papa Chuck and I enjoying better times

Ted's parents, Gigi and Papa, dancing at our wedding

Gigi and Maxie going for a walk

My stepmother, Grandma Leonie, with Maxie at Passover

Maxie with my mom's boyfriend, Ken (K-pa)

Leonie, Papa Chuck and Mandy at the hospital when Maxie was born

Proud Grandma with Baby Max

I just cannot imagine what our parents must be going through.  Becoming a grandparent must be one of the most joyous things that can happen in a persons life.  I know losing Maxie must be so painful for them. Their dreams and hopes for the future have also been trashed and my heart bleeds for them.
My mom broke her arm last Friday - BAD.  She must have already had a hairline fracture or something and then, walking down the concrete steps in her garage with a laundry basket, she lost her balance, threw her arms up in the air, and heard a loud pop or a tear.  Her arm went slack.  She is now in a compression cast from her shoulder to her elbow.  She is bruised and her arm is being held snugly to her body in a tight sling. There is a lot she cannot do - drive, blowdry her hair, cut up food, floss....no need to even list it all.  Her wonderful friend and neighbor, Jackie, is helping her by driving her to appointments and the office and keeping her good company.  Her boyfriend, Ken, is cooking and cleaning and also helping her get dressed.  Actually, they are both doing so much more than I can even list here.  I am trying to help as well but I am not good company and I am mean and bossy.  This morning I came over and helped her get dressed and blowdry her hair.  Every time I turned around though, she was bending over, picking things off the floor and attempting to fold laundry.  I understand her need to be independent but I am too tired to chase her around and make sure she doesn't hurt herself.  She is a grown woman, I know.  My friends have offered to set up a "meal train" for her as well but she said she is fine, she is happy opening a can of beans.  I don't think I need to be the one to tell her that she, in fact, cannot open a can of beans right now.
Teddy's parents are far away in Connecticut. I know that they feel incredible grief and are so worried about their boy.  I am happy to know that they have Sadie, my niece to brighten up their days.  My dad has good days and bad and he gets a lot of joy from my other niece Mandy. I am glad for that as well.  I am sure that I give no comfort.  I give new meaning to "Debbie Downer".
I woke up yesterday morning so sad.  Ted gets up very early to be at his job site at 7:30.  It must take incredible strength to pull himself out of bed so early.  He has never been a morning person as it is.  After he left the house, I fell back asleep and I heard a little voice in my dream that said, "Mommy, if you just open your heart, I will come to you."  So I concentrated really hard and then, in my dream, I was holding a little stuffed monkey that Maxie loved and I could actually feel his strong presence in it.  When I woke up, I ran to his room and grabbed the monkey, that now sits on his changing table, and I hugged it, but there was nothing there.  I then pulled out his dirty laundry that I put into plastic bags in a drawer and inhaled his smell, hoping I would feel him again.  At least I had a moment of him in my chest, filling my lungs.  That is all I have right now.
Nothing will ever replace our boy.  I miss him more with each day as each day is so much further from him than the day before.  I am still praying though, that some day, I can make grandparents smile with us again.  Praying that my presence in my mom's daily life isn't only making her emotional pain worse.  Praying that her arm will heal well so she can hold another grandchild in the near future.  That is what I pray for every day. 

What Happened

I guess there are quite a few people who have been reading my blog or have heard about me through friends and have asked, "What happened to Maxie?"  I so wish that I had an answer to give you (and myself).  An answer that would make sense to you so that you could think to yourself, "that will never happen to my kid" and so that I could think to myself, " we can prevent this from ever happening again".  But, as cruel luck would have it, we have no answers.  All we know is that when Maxie woke up on the morning of July 19th, all was normal in our house.  Ted got up and gave Max a bottle, changed him, put him in his onesie for the day and brought him into our bedroom, where we played with him for a while.  I got dressed and then put Max in the high chair and fed him mushed up bananas and greek yogurt.  Then I took him to daycare.  Tisha reports nothing unusual happening that morning.  All of the babies go down for their first nap at 10 am.  She goes through and changes each one of them and gives them bottles before they go to sleep.  It is like a science over there and they all pass right out.  Max hadn't even been changed yet.  He was lying in his crib awake, waiting to be changed, like every other morning since he was 3 months old.  Tisha was changing another baby on the changing table right next to Max when she saw that he was turning blue.  She picked him up and he was limp, and she immediately started infant CPR.  She then called for her mother, who is a pediatric nurse, to come into the room and take over while she called paramedics.  They were there within a few minutes and he was rushed 4 blocks away to St. Joseph's, where after 30 minutes, the doctor in the ER was able to get his heart beating again.  I was there for the last 15 minutes or so and I thanked the doctor through my frantic tears for saving my baby.  As it turned out, by then he had lost too much oxygen to his little brain.  The paramedic that picked up Max to move him to the PICU in Tarzana pulled Ted and I aside and said that they would try to keep his heart beating to the next location but that even so, he wanted to warn us that he sensed something foreboding.  I won't get into the whole rest of what happened from there now but once at Tarzana, he was looked at by a number of doctors who found a perfectly healthy heart, a perfectly healthy set of lungs and perfectly healthy brain.  We kept him on life support praying that he would be our miracle baby but it didn't happen.  He was gone.  He has since been autopsied and the coroner's office also did not find anything.  People keep telling me it was a one in a million kind of thing and that there is no explanation.  At first I didn't need an explanation, my baby was gone.  Now, I am desperate to know what happened.  But, I may never know and that just adds hurt and distress upon our pain.  Everyone did everything right and still this happened.
The ER called Max's pediatrician when they were trying to get his heartbeat back and by the time I checked my messages again, I heard a voicemail from his office from one of the nurses there.  She said they were calling to see what happened to Max.  They wanted me to call them whenever I could.  I actually didn't get around to calling them until the Monday after the day Max died.  I ended up talking to his pediatrician who seemed to wonder why I was even calling.  "Yes" he had heard Max died and while he, himself didn't talk with the Coroner's office directly, he heard what had happened.  He had just checked Max the week before and all was fine.  He basically told me that these things sometimes (though rarely) happened and then sounded eager to get off the phone with me.  That conversation sent me into a tailspin.  Didn't he care?  Max was his patient!  Max was just a baby!  Wasn't he as distraught as I was about what had happened? He was not and that was clear. 
The next day I called Dr. Dwight, my OBGYN, who I love and who I know everyone loves.  He is a love!  I told him what happened to Maxie and he sounded horrified, he couldn't believe his ears.  I told him how sad I am and he empathized with me.  I told him that I know it sounds soon, but we wanted to start trying again, to which he answered, "Absolutely!  You must!".  He offered to look over Maxie's reports just to see if maybe he could find anything that anyone else may have missed.  He assured me that I will have more babies and that this will never happen to us again,  I wish I could feel as confident as he sounded.  The last thing I asked him on the phone was whether he had ever heard of anything like this happening to anyone before and he answered, that "No", he hadn't.  So sad.  Why my Max?!!!!!!
 Since then, several bereaved parents have reached out to us.  Parents of babies, of teenagers, young adults and adult children.  I am so grateful that the have the strength to want to help us, upon the strength they need just to take care of themselves.  We all feel so different and yet, so the same.  Ted's cousins lost their daughter many years ago in an in-line skating accident.  He wrote me this morning about how fresh their sorrow is on the Yarziet (anniversary) of her passing and how he hoped that, as the sages have suggested, Ted and I will have “the strength to change what you can, the courage to accept what you can’t,  and the wisdom to know the difference between the two”.

I miss Max

I miss Max so much it is all consuming.  He is all I ever think about.

Greg had four beautiful photos of Max enlarged really big for the funeral (the ones attached to this post).  They are now positioned around our small house.  I stare at them all day long and wonder how it is that this blessed life is now gone from earth.  How can it even be that Max doesn't exist any longer?  It still doesn't seem real.  By now, he would be crawling - really crawling.  We would have baby proofed our home.  Our morning routine would be a little different by now I am sure.  How?  I can't say, but things are ever changing with a baby. We were days away from bathing Max in the bathtub.  I had bought a slip mat for the bottom of the tub and a little pad for my knees, so I could kneel comfortably while bathing him.  He would be playing in what Ted calls "The Thunder Dome", a small gated area, that came to our house while we were in the hospital and still sits in a box in Maxie's room.  He would be strapped to me in the ergo carrier that I bought online the day before "the incident".

I miss looking at the back of his little head, neck and the tiny slope of his shoulders while he sat in my lap.  I miss how contended he would get when I picked him up when he was fussing.  I miss how he would lie his cheek to my chest for moments while I carried him on my hip.  When I see other babies doing this to their mothers, my heart feels heavy.  I miss watching him smile when his Daddy walked into the room.  I miss going into his room in the morning, seeing him see me, and then seeing the same smile spread across his face.  I miss him flirting with our housekeeper - banging on his tray and howling until he would get her attention and then flashing her a sly and lovely smile.  He had mad flirting skills.  I miss the struggle of putting him in his PJs while he rolled around the bed looking for stuffed animals to play with.  I miss his perfectly soft and flawless skin (never really had a bout of baby acne). I miss how big his eyes were.  I miss the one dimple on the right cheek and the tiny bump behind that ear.  I miss his little tummy and perfect belly button.  I hope that none of these memories fade with time.  I want them all to be fresh always.  I have never loved with such abandon, without fear, with no guards up.  When I first starting dating Ted, he told me I came off as a little cold.  I told him that it was because I didn't want to "emotionally invest" in him yet.  I was emotionally invested in Max the first time I saw the little bean on an ultrasound.  He was the absolute love of my life.  The very best thing that ever happened to me.  And, now, he is gone and I am so sad.  My life will never be the same without my Maxie.

I tried to sum it all up at his funeral:

His beautiful face
His perfect eyebrows
His long eye lashes
His blue eyes with one small corner of brown
This perfect twist of his ears
His 2 toothed grin
His pudgy knees, His "squeezy" thighs
His intoxicating smell
I am in love with every bit of him
Ted and I were blessed enough to have found each other - Our Max made our lives infinitely more lovely
I spent all day of all nine and a half months thinking about him.
I will spend every moment for the rest of my life with him in my heart
Every night I sang him to sleep with a special Hebrew Song
Join me if you can, or just follow along, in singing my baby to sleep.

רד היום, שמש דום

כוכבים נוצצים במרום,

לילה בא, למנוחה,

שלום, שלום

Day is done 
Gone the sun 
Stars are sparkling in the sky 
Evening comes, to give rest 
May you have peace

Rad Hayome 
Shemesh dome
Cochavim notztezeem bamarome 
Laila bah, lem'noocha 
Shalom, Shalom......