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.

It gets tougher every day

The Sunday evening before Max stopped breathing, I had a meltdown of epic proportions.  I literally sat on the couch and cried to Ted, while he tried to console me and held me.  I could not stop crying.  It was something that hadn't happened in this way before that night.  Not that he hadn't had to console me while I cried.  It was just that this time I was more upset than I had been in a long time.  We had just finished a particularly lovely weekend with our baby and I so loved being with him all day long.  We went to a first birthday party for Ted's boss's son on Saturday which was really nice and got me thinking a lot about Max's upcoming first birthday and how we might celebrate it.  There was a little bubble machine at the party and we sat in the grass with Max and a couple of other children and played with it.  It was the first time Max had seen bubbles.  He didn't know what to make of them but he was smiling and watching them breeze around his little face.  He was on my lap most of the afternoon or in his daddy's arms.  On the way there, he napped in his car seat while Ted and I killed time driving through Hancock Park and day dreaming out the houses that we would someday live in.  We met some nice people at the party and talked about babies and baby stuff.  The next day, Bianca, her husband Ethan and their three children came over for brunch.  Charlotte, their oldest, politely sat on the couch and watched some children's programming.  Their twin boys eagerly played with all of Maxie's baby stuff.  We stood and sat around our kitchen bar area and laughed about parenthood and showed off our Max.  His best move was when he went from totally engaged and awake to napping in about 5 minutes flat.  My kid could keep a schedule like nobody's business.  With the weekend winding down and a whole week before I would get to be with Max again, I was feeling so sad.  Additionally, I would be leaving Ted and Max for a long weekend in 2 weeks to go to a staff conference while they attended Ted's family reunion in Zion, Utah.  I was looking forward to the conference, but totally anxious about 5 days away from my baby.  Plus, I wanted to be with them and all of the cousins in that beautiful place.  I cried my eyes out that night.  Balancing motherhood and a career was proving to be so challenging emotionally.  I hated missing my baby all day long.  It was zapping the life out of me.  I know this is what every working parent deals with but it was new to me, as parenting was still new to me, as Max was only nine and a half months old.  I have wondered since that time if this was the universe's way of telling me that I didn't count my blessings enough.  I DID!  I actually did know how good I had it.  I just wanted to be good at everything.  I wanted to continue to be successful at work but I felt like I could not get enough time with my baby.  Then people would invite me to things without Max on the weekends and it was just more time away from him.  And sometimes I would have to work on weekends or in the evenings...that is my job.  It isn't like I am or was complaining, I just missed Max.  I just missed him.  All day long.  I know that I am not important enough to have been the spiritual cause of this catastrophe.  There is no way that g-d was trying to teach me a lesson.  But, in retrospect, the timing is just unbelievable.  It's been 103 days without Max.  I cry like I did that night every single day now.  I wanted to be good at everything and now I am good at nothing, unless you count crying and sitting on the couch.  I missed my baby being away from him during the day, but at least I had him for a few hours every morning and night.  If you think that time is supposed to be healing this, you think wrong.  I miss him!  I miss my baby!  I miss my Max!  I am in agony and it is so unfair.  And, if you think this is something unique that I am feeling - ask my husband if it is getting better.  Ask my mother, my father, Max's cousin Mandy, Uncle Paul, Gigi, Auntie Beth.  Ask anyone who knew and loved Max.  It gets tougher every single day.  Every day is one more day without the love of our lives.  It gets tougher.

My Cuddly Max

Maxie was a cuddler.  He was warm and sweet and loving to everyone who wanted to love him.  I wanted to share these photos of Maxie that I love.  One photo with me, a few of Maxie with Ken (K-pa), my mom's boyfriend, and a few with our friend Rob.  This is exactly how I picture myself with Maxie before I fall asleep at night.  It is why my arms feel empty all day long.  I miss him so much.

Why My Max?

Oh Lord!  I miss my baby with something so fierce today.  I can't even imagine how I am still here without him.  Let me tell you some stuff about Max that I am sure I have already told you.  He was a GOOD baby. He smiled all of the time.  He was such a good sleeper and napper.  When you walked into his room in the morning, his little face would immediately turn on a great big smile.  He was a good eater.  He was smart (and I know this to be true!).  He was the cutest thing I ever saw in my whole life and he got cuter every single day.  Everyone loved Max.  He was popular at daycare.  He was the apple of both of his cousin's eyes and he had doting grandparents, a loving auntie and uncle.  His mommy and daddy could not believe how lucky we were that he was the baby we made.  We talked about him and how wonderful he was without stop.  We were completely over the moon. Every day, I sent photo updates of him to our entire immediate family.  I wanted to make sure that his East Coast family could follow along as he developed and grew in cuteness. At the moment that I got the phone call from daycare that Max had stopped breathing, I was in the middle of posting his most recent photo to Facebook.  This is the worst form of torture - knowing that I will never have him in my arms again.  It makes me beyond crazy.  I am SO scared about our future.  So incredibly scared and I can't even get into EVERYTHING that I am scared about because there is so much.  When I think about it all, I get so overwhelmed, I throw myself into a panic.  Exactly the reason I am supposed to be living one minute at a time.  As much as I hate it, I know it is a rule I have to start following because if I even start to think about one day more without Max, I lose my mind.  Max had the most beautiful eyes - "as big as Eskimo Pies", is what my dad used to say.  He would look right into my eyes, the way most adults will not.  I could stare into his eyes forever.  Oh man, I am so sad.  I miss this boy with all of my heart and I am crushed.  This isn't the way it is supposed to be.  I can't stop asking the question, even though I know there is no answer - Why MY Max?

Taking Maxie to work

My co-workers always used to ask me when I was going to bring Maxie to work.  I wanted to share him, because he is adorable, but I knew that bringing Maxie to work meant that I wouldn't actually get any work done.  Still, I did want to bring him with me one day and it was a good excuse to spend an extra day with Maxie.  I hated being away from him.  Anyway, I can't remember exactly when I brought him, but it was a day before a holiday and there were a lot of people out of the office.  Those who were there, properly "ooo'ed and ahhhh'ed" at him and I think he did a really good job being extra cute.  I always joked that if I ever brought Maxie in, our Campaign Executive's job description would have to change for the day and she could be a nanny.  She was the one who most asked for me to bring Max in, so it seemed fair.  So, that is what happened.  Carly spent an hour or two hanging with Max while I checked emails.  That was about all I got done that day.  Maxie was not the kind of baby that you could just hang out with and not pay attention to.  He would make little noises and get fidgety.  He wanted his mommy's attention and I loved nothing more than to give it to him.  There are photos of Max all around my office.  I have a corner of stuff that is waiting to come him with me for him, children's books, a little toddler chair, a big bag to store toys in.  My office sits empty, since I haven't been there much in these past three months.  There is so much proof of the nine and a half months that I got to be a mother to this extraordinary little boy.  I feel him in my soul and yet I cannot find him anywhere.  This is a photo from the day Maxie came to visit.  A day, like every other one, that was very special to both of us.

One breath at a time

Thursdays just suck.  Every Thursday is one more week since I last saw Max.  Plus, my housekeeper comes on Thursdays, so I try to get lost.  My housekeeper and I always had a rather contentious relationship.  She wasn't sure that her job in our house was to clean, I always reminded her that, indeed, that was exactly her job.  Whenever she used to see me at home when she got there, she would roll her eyes.  That is, until the day when Max was home with me.  Not sure what it was, but they had an instant connection.  He was flirting with her and she was peek a booing back with him and I was trying to feed him and I just gave up because he was so much more into her than his yams.  After their first love connection, she really warmed up to me and whenever she came over, she would talk to me about Max, asking questions and talking about how cute he was.  Every few weeks, he would be there when she got there and the two of them would go at it again.  I warmed up to her too.  Anyone who loves my son can do no wrong.  The Thursday after Max died, my housekeeper came over and saw me in the house.  She got a big smile on her face because she thought Max was with me.  I should have called her but it was the last thing on my mind.  When she came in she beamed, "Where is the baby?" and I had to say, "the baby died last week."  Sickening.  Her face went white.  She sped to his room and looked inside, as if I was joking and he would be sitting there.  She looked around and saw the gigantic posters of Max all over our living room and she slumped to the floor crying, "No puedo creer!  No puedo creer!" (I can't believe it), she screamed.  I could barely stand myself and found that I began to comfort her (as I did with so many people in the weeks following Max's death.  Totally bizarre, but I found myself comforting the people that loved Max instead of the other way around in a lot of cases).  All I could say to her was, "yo tampoco" (me neither), because, of course, I STILL don't believe it.  She still cleans our house, I get lost because I can't handle her grief.  I am having too much trouble dealing with my own.  Usually I come over to my mother's house and work and read over here.  My mother left for El Salvador and Costa Rica this morning at 4 am.  I knew the house would be empty.  I drove in the gates and parked my car, walked up to the house, opened the door and set off the alarm.  It is LOUD.  I couldn't call my mom because she is in Central America, my brother wasn't answering his phone.  I tried all of the combinations I could think of but my heart was beating through my brains and I thought I was going to pass out.  I guess there has been a rash of burglaries in the neighborhood recently.  I hadn't thought to ask her for the alarm code because I have never had to use it before.  Thankfully, my brother finally called me back with the code.  Not really related, but actually related in my boggled brain (try to stay with my stream of consciousness for a minute if you will), yesterday morning I woke up at 4 am and smelled gas in our room.  I thought it was my imagination and tried to go back to sleep but it really smelled like gas.  I couldn't figure it out and I am not sure why I didn't get up and start checking around but for some reason, I convinced myself that I was imagining it.  Finally, around 5 am, I went into our bathroom and heard a sound like the air coming fast out of a balloon.  I opened the door from our bathroom that leads to an outside storage closet and found that gas valve on the side of the house open and shooting gas.  I have no idea how long it was like that but it scared the living daylights out of me.  I KNOW that even if you haven't had a child die, you can relate to those times in life when if it isn't one thing it is another. It seems like it has been that way since Max died.  Obviously, every other thing that has happened, on its own, would be regretful or a set back or an annoyance, but somehow in the shadow of his death, it all seems so much worse: Ted's insect incident and all of his poison oak, my mom's broken arm, my brother's cat died (which wouldn't have been so bad, afterall, he was over 20 years old.  But my poor brother came over to my mom's while I was here one day and had to dig the hole in our pet cemetery and bury the cat by himself.  It was sad to watch), my miscarriage.... blah, blah, blah, you know the story.  All of the grief experts say that all I can do is "take one breath at a time".  Living one breath at a time is agonizing.  I am the type of person that used to make lists of potential upcoming vacations and count down days and get excited about seasons and holidays before they even arrived.  Now I am living one breath at a time, and I am just getting started.

Representing and in Solidarity with Ted

Teddy grew up in Fairfield, CT.  It is a beautiful town with trees everywhere and a lovely beach and quaint stores.  Everywhere you go, you bump into people you know.  The friends that Teddy made growing up in Fairfield are still his very best.  They are an awesome group of down to earth people who like to have fun and are incredibly loyal.  They are all connected and probably more than half of them married other people within the group of friends.  Even though I am an "outsider", I have always felt right at home with the Fairfield crew.

Right after Max died, we heard from so many of Ted's friends.  They sent emails and cards and posted well wishes on Facebook.  A few of them flew out for the funeral and for a night or two of shiva.  You can tell that Ted is a well loved guy in his hometown, as well he should be.  Ted is salt of the earth.  I have felt terribly about the fact that we live in my city, close to my family, near all of my friends.  Not that Teddy complains at all and to be sure, my friends and family have completely embraced Ted.  It's just that when you are going through something this hard, you want to be with the people who know you best.  Ted is a GUY.  He isn't necessarily looking to express his sorrow to his friends either.  He is pretty private (unlike his wife), but being close to the people who you are most comfortable with is comforting.  Ted's friend Chris Barry came to LA for Max's funeral and stayed with us for a few days.  He had never been to LA.  I kept offering him my car to go to the beach or see Hollywood Blvd., but he insisted that wasn't why he came here.  Instead, he cut bushes with Ted on the side of our house and helped keep our kitchen clean.  I know it meant a lot to Teddy.

A couple of weeks ago, Ted got together with a few guys from the high school crew to watch a Giants football game.  I sort of wondered if they were going to talk about Max at all or just not mention him.  Not that they aren't terrific guys, just that guys are guys and they don't talk about uncomfortable stuff.  I know that either way, Teddy was just happy to be in their company, watching football and taking a break from the grieving.  As it went, the guys had gotten together and got Ted this:

 
Guys don't really need to use words to express their feelings.  Ted sent me this photo in a text, I cried.  It is so perfect.  This week has been particularly hard for Teddy (I asked him if it was ok for me to write about him and I think it is ok that I am saying this).  My numbness has been wearing off quicker than his so he is hitting some of the really low points I have been in for weeks.  It breaks my heart seeing him in pain.  I know he feels like he needs to be the strong one.  He is like Atlas, holding the weight of the world on his shoulders.  It is too much.  My husband doesn't deserve any of this.  He is one of the world's best people and I mean that from the bottom of my heart.  Yesterday he came home from work and we sat on the couch and he talked about t-shirt sales and Beth's fundraising page and then he signed on to Facebook to show me something.  A bunch of the Fairfield crew had replaced their Facebook profile photos with the new Team Maxie logo.  His friend Kyle replaced his profile photo with a photo of Ted's "Maxie" tattoo.  Guys and girls, both, using representations of Maxie instead of their own photos without even telling Ted they had done it.  By the way, they don't all still live in Fairfield, but none of them live in LA.  I don't know who started it or when it started but it is really special and I know it made Ted feel really supported by his Fairfield peeps from all the way out here in California.  We love you guys!  Thank you.

Maxie es un primi

Maxie came into this world a month before his due date.  I will thrilled.  I had a pretty mellow pregnancy but that last month was SO uncomfortable.  I thought I was going to pop, plus Max was sitting PRETTY low.  I am so grateful for that extra month we had with him.  He was 4 weeks early, which isn't really considered to be premature but the pediatrician kept telling me not to worry that he would be about a month behind his milestones.  By the time he reached 9 months, he had basically "caught up" anyway.  We used to take Maxie to the zoo a lot just because it is down the street and I really like the gorillas.  He obviously was not old enough to appreciate the animals, although a few weeks more and he would have been able to see a lot more.  Prima Sharon came to visit in December of last year, Maxie was only 2 months old.  We sat in one of the monkey areas with Max for a long time while I gave him a bottle and bounced him and we made up this song about him.  The words are "Maxie es un primi, Maxie es un primi, Maxie es un primi, es un primi baby boy! Hey!"   Ted always thought we were singing "Maxie is suprema, Maxie is suprema..." He liked that version much better.  So, without further ado:

Also, I have a jpeg of the T-shirts.  Thank you to everyone who has already placed their order:

If you can't read it (maybe too small)...Toddler and short sleeves are $30 and long sleeves are $40.  All of the proceeds go to Maxie's forest.  Thank you!

Looking for your support!

First of all, I want to thank so many of you for writing me after my I posted my letter to "Anonymous".  You confirmed that you too felt this grief after experiencing similar (and sometimes dissimilar) losses, you told me that it was disgusting that I felt like I needed to defend myself, and you agreed that grief is not a nice little package that you can wrap up and put away.  I am in this grief every single day.  I cannot escape.   Not having Max and knowing all of the wonderful things he will miss in this life (including all of the love that I gave him and planned to continue giving him) is excruciating.  While I really value your personal messages to me, I urge you to "go public" and post them to my blog.  I hope that other people will visit my site and know that they should not be afraid to feel exactly how they feel, that what they feel is normal.  Your encouragement means the world to me but don't be afraid to share it.  I think I probably would feel safer posting a comment like the one "anonymous" sent if I knew that there would be some public support as well.  There has been a debate about whether or not "Anonymous" is someone that I know.  I thought that for sure it wasn't but it seems most everyone else thinks it is.  The truth is that I have received personal emails that were also very unsupportive, telling me it is time to move on and wondering why this is so hard for me.  They were a little less mean spirited, probably because the senders were not allowed to remain anonymous.

This brings me to the point of what I wanted to write about today.  You may have seen that I posted the link to The Parental Bereavement Act on my Facebook page.  I also included this article.  (You can click on the links for the information).  I have explained how kind the CEO of my organization has been to me and I cannot explain how difficult going back to work would have been.  I was "encouraged" by some in my organization to return to work a week after the funeral and I put it off.  That next week, Ted was in the hospital for 3 days and I was out of my mind.  I got more "encouraging" phone calls to return to work that following week and I felt that I had no choice.  So, I decided to go in on a Tuesday (I think) and I brought Prima Sharon with me because she happened to still be in town.  I am told that someone advised everyone in my office to treat me "as normal as possible".  So, instead of people coming in and putting an arm around me or saying how sorry they were or treating me like someone whose baby had just died, people greeted me as if I had just come back from a Hawaiian vacation.  I recognize that some people were just awkward and don't know how to act around someone who has experienced such a great loss.  I know that to be especially true for young people, but I got the same strange excited and bizarre cheesy smile from people who I know have lost parents and who have children and grandchildren themselves and had to have had some understanding of how incredibly miserable I was.  Anyway, the experience was unbearable.  I was there for three hours and felt like I was going to throw up the whole time.  My heart was racing, my palms were sweating, my anxiety was through the roof.  I had to get out of there.  I have only been back a few times since and while the gigantic grins are gone, the pain of being there is not.  And, let me be clear: it isn't that work is the problem for me, it is that being anywhere out of my house is the problem right now.  Watching the world spin around me, while people barely acknowledge my suffering, and trying to feign interest in anything at all, is very challenging.  It goes for "fun" things too, like a yoga class or going out to eat.  I felt empowered to go out to sushi with Ted on Friday night and got all dressed up for the first time in a long time (such a change that when Ted came to the door he said, "Well, look who it is!").  We walked into the restaurant and parked at the first table next to the front door was a little snap and go stroller and a baby of about 6 months.  I had the same anxious reaction out to dinner Friday night as I did when I went to my last board meeting.  I thought if I didn't get out, I would drop dead.  Still, I want to mention that for many people, going back to work is the one thing that gets them through this horrific experience.  I know that work is an escape for Teddy and he can mostly turn the grief off while he is there.  I think it partly has to do with a persons personality, partly with their gender, and partly the nature of their work.  For MANY of us, waking up each day, our first thought is, "I can't believe this is my reality" and in my case, "I have to live another day without Max".  For many of us, getting out of bed each day is a challenge.  It has been just over three months since Max died and I am no less sad today that I was three months ago.  In fact, the reality of living each day without him is so much worse than I ever even imagined.

The Parental Bereavement bill recognizes that this is a common experience for parents who have lost a child.  The bill expands the Family and Medical Leave Act to allow grieving parents to take up to 12 weeks without worrying about losing their job.  As you know, 12 weeks later, I am not "cured".  When Max was born, I took all 12 weeks of FMLA time to bond with him.  Many of my colleagues and donors were incredulous that I would take all 12 weeks.  I guess something that they hadn't known about me before is that my family is actually more important to me than my job.  I am not saying that my job isn't important.  What I am saying is that my family comes first.  I have always supervised my staff that way as well.  A crisis in their family or a sick child or husband has always been more important to me than keeping track of the exact in and out time of the people who I supervise.  Work is work, and even when it is incredibly important work, I truly believe that the health and welfare of ourselves and our families is more important.  The 12 weeks that I spent with Max were SO important.  I can't imagine I would have been very productive had I gone back to work earlier anyway.  I would have been exhausted and thinking about him all day.  When I went back, that proved to be the case.  My first week back, I sat in my office and pumped about 8 ounces of breast milk directly into my lap - I forgot to attach the bottles to my pump and closed my eyes because I was exhausted and didn't notice what was happening until I heard the drips.  I then went, with a wet skirt (I tried to mop it up with paper towels), to a luncheon with about 15 members of my Board of Directors and a member of the Israeli Knesset (Parliament).  A week later, I fell asleep at the wheel of my car while driving down Wilshire Blvd to a board meeting.  Bereavement proves to be an even LESS lucid time.  All of my thoughts center around Max.  I cry for hours at a time.  My whole body hurts and my brain feels heavy.  I also have major social anxiety and anxiety in general.  To be frank, I don't know what will happen with me but I am fighting for my life and that is taking up all of my strength.  To give a parent 12 weeks off to bond with their new child is important and I am grateful that I had it.  To give a parent 3 days off (the standard) to grieve their child is inhumane.  I know that nobody can "imagine" the grief, but take it from a griever (and all of the many grievers that support this bill), it is horrific.  Again, you can click here to register your support.

Also, I promised Ted that I would tell you about the "Team Maxie" T-shirts that we are selling to support Beth's marathon run and Maxie's forest.  If you email me by clicking my email address link and tell me what size/s and quantities you would like, we will let you know where you can send your check. In the next couple of days, my friend Suzy might enable her website so that you can pay by paypal there as well.  We have short sleeves, long sleeves and toddler sizes.  (blogger isn't letting me post the pdf of all of the styles and the front but see below for an image of the back and I will figure out how to get the full display up here soon).  All proceeds go to support Maxie's forest.  Thank you so much for your support.

Screen Savers

We've all got pictures of Maxie as our screen savers.  Every time I want to look at my phone to see the time, I see my beautiful boy's face.  Every time my mom wants to check her calendar, there he is.  When my mother in law gets a call, the phone lights up with Maxie.  When you send Ted a text, the message is imposed on Maxie's picture.  I remember waking up in Lake Arrowhead after my most terrible nightmare and checking the time on my phone and seeing Maxie's face.  First love and then sorrow rushed through my entire body.  While Prima Sharon doesn't have Maxie as her screen saver, she has many photos of him on her phone.  My skin crawls thinking about her telling me that someone she knows asked, while looking through her photos, if these were photos of the baby that died.  When she answered, yes, the "friend" said she should delete them.  Some day someone is going to ask me if the baby on the phone is my son and I will answer yes and they will say how cute he is.  I just hope they don't ask me how old he is.  I am trying to figure out what my response is going to be to the questions from strangers about whether I have children, and then when I am pregnant, is this my first, and when I do have more children, how many do I have.  I like to think that I will always say yes and then include Maxie in my count.  How could I not?  Other moms have told me that sometimes they just tell, and other times, they just don't have the energy to console the poor person who asked and then feels terrible about having to hear that their baby died.  Recently my mom's phone lit up and a woman said, "What a beautiful baby!  Is that your grandchild?"  My mom just thanked the woman and said yes.  Seems easy enough.  The fact is that none of this is easy at all.

Grandma Susanna's screen saver.  The photo was taken in her bed while Maxie was watching cartoons and took a little pause to give her this sweet look.

My happy boys (my screen saver).  This photo breaks my heart.  It reminds me of our happy days.

Teddy's screen saver.  This photo was taken of Max in his stroller on our trip to Costa Rica

You can't go there

"If a mother is mourning, not for what she has lost, but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created.  And it may be a comfort to believe that she herself, in losing her only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy Him forever'. [It may be] a comfort to the God-aimed, eternal spirit within her.  But not to her motherhood.  The maternal happiness must be written off.  Never, in any place or time, will she have her son on her knee, or bathe him, or tell him a story, or plan for his future, or see her grandchild" - CS Lewis, A Grief Observed

What I feel is NATURAL.  To feel an enormous loss as I do is what any parent would feel because our present and our future has been ripped away from us.  It is EASY for you to judge me from where you stand.  But, I DARE you, FOR ONE MINUTE, to consider that it was YOUR child that died and not mine.  I don't need to ask how it feels to consider this thought because I KNOW that you would NOT dare to consider it. AND, if your judgment comes from a home with no children, you have no place from which to even begin to judge.  ONLY if you have been where I have been.  ONLY if you have too lost a child.  ONLY if you know this heartbreak, will your words have any bearing on my heart.  I have spent countless hours reading about, speaking with, and listening to women who have all been in my shoes.  What I KNOW is that no matter how PAINFUL this is....and it is painful on a level that is ALL CONSUMING....I am exactly where I am supposed to be.  

Grief is Messy

I got a comment today that I decided to delete rather than post, because I thought it was mean spirited, not constructive and potentially frightening to my friends and family.  It was posted by "Anonymous".  Way to go "Anonymous"!  If you are really concerned, and if you are someone I know, just write to me directly.  Many people have and I have responded to them.  If you read my blog, you come here once a day and read the thoughts that I have when I first wake up each morning.  You read a little about Maxie and his beautiful spirit, you read a little about our life after Maxie and the things that we are doing, you read about my grief and the very tough emotions that I am grappling with.  You will never know everything there is to know about my Max, you will not know all of the activities that we participate in, you will certainly not have the full picture of the complex emotions that surround my grief.  Some days my posts are especially dark and on those days, I find it hard to get out of bed because my sadness is so consuming.  Other days, I have a full schedule of activities.  Here is something that I want to make clear: You do not know me because you read my blog.  I could try to write really clean and sunny pieces just about the light and joy that Max brought into our lives but I decided when I started this blog to write honestly because grief is messy.  I have not been on this journey very long but I have found that the books, websites, movies and blogs that depict loss realistically have been a thousand fold more helpful to my healing than the "how to cope with grief" guides.  I don't need to read about the seven stages of grief, I am living them.  I also don't need to write about them because "anger", "bargaining", "shock" are just words.  I decided to write about how those feelings actually come up in my journey.  I decided to be authentic and not paint a pretty picture when the picture isn't pretty.  Anonymous, I can tell by reading your comment that you have never experienced traumatic loss with accompanying post-traumatic stress disorder and complicated grief.  I hope that you never ever have to.  If, g-d forbid, you ever do have this experience, please know that you can come back to my blog at that point.  I read a number of blogs written by mommies who have been through what I am going through and they are what have given me hope.  I read the journal of my new friend down the street, who also lost a baby to SIDS and it was as if I was reading my own words.  To read something honest from someone who has walked in my shoes and made it to the other side, had more children, found happiness and still managed to honor the memory of their little one is totally inspiring.  It gives me lots and lots of hope.  I am three months in, I just went through a number of "first anniversaries", we feel his absence every morning and all day long.  This is what grief looks like.  I have repeated many, many times, I have no intention of killing myself.  I want to live a long life with my beautiful husband and have many more babies.  I would like to find a way to connect to my child.  I speak to him daily.  I think about him with every thought.  As hard as this may be to absorb, I do not fear death in the same way I once did because there is the hope that I will be reunited with my little love.  But I do not need to explain myself to you, Anonymous. I have said it once and I will say it a thousand more times - my blog is not required reading.  And last but not least Anonymous, thank you for the brilliant suggestion that I seek help.  I will definitely look into that.

In the meantime, if you are just signing in today, please read my post below about reading to Maxie.  I am so happy that I have pictures of his little face totally engrossed in his evening book.

Reading to Maxie

I've mentioned many times how much I enjoyed reading to Maxie and how much he loved being read to.  It was seriously one of the greatest joys I had, even when I was just reading the same 8 books over and over.  I loved the view of Maxie's little head from behind.  He has such a strong neck and could hold his head up pretty well by about 8 weeks.  Until then, I just leaned him against my chest.  He had a birthmark on the back of his head that sometimes you could hardly see and other times got darker.  I loved his little posture and the way that his shoulders sloped.  Best of all was how he really looked so intently at all of the pages in the book.  I would lean forward so I could see his face and see him following along.  One evening, when Max was about 2 months old, my friend Sigalle came over and got here right at the end of the evening routine, when I was reading to him.  She sat on the end of the bed in his room, looking at him from the front and she was giggling and saying, "I can't believe he is actually following along with the book!".  Frankly, I don't know if all little babies do that but regardless, I found it very impressive.  Apparently, she did too.  I remember that she took a turn and read him the "Pajama Time" book....not one of his favorites, but I am not sure that I realized that at the time.  I loved reading "Goodnight Gorilla" to him because it was so colorful and there was so much room for imagination.  I always asked other mammas if they made up dialogue for the empty pages or just let it be silent while baby looked at the illustrations.  I made stuff up.  When Ted was with me, we would switch off turns while all of the animals would say good night and we would make up new voices for each animal.  Nasal voice, angry voice, Kermit the frog voice, girlie voice, soft voice....Max loved that.  Sometimes when we were out and he was a little agitated, I could just say "Good night" in a bunch of silly voices and he would smile at me.  I also liked to give a "shamana hamana hamana shamana" grumble to the zoo keepers wife when she was walking all of the animals back to the zoo.   I have also mentioned how much Max loved "Goodnight Moon".  This book is like baby crack.  I swear, you just read it and all is right in the baby world.  I know it by heart and would always recite it to him when we were out and about.  It definitely made him smile.  I recite it to him whenever I visit his grave.  I whispered it in his ear when we were in the hospital. I hope it gives him some comfort.  Bianca gave me these really basic books that Max loved with pictures of babies and animals.  He especially liked the little boy on the page where everything was Orange.  Whenever we got to "Orange", he would get a look like, "Hey, there is my little friend".  When I read the animal book to him, I would tell him which animals were our favorites so he could know us better, "Frog.....uncle Paul LOVES frogs.   Lion.....Lion is your daddy's favorite animal."  And, even though I don't think Max ever saw Sesame Street, he loved the books with the Sesame Street characters.  He had some wonderful Sesame Street teething toys that were the center pieces at the shower that my stepmother threw for me that her girlfriends attended.  Maybe he recognized some of the characters that way.  He liked to chew on cookie monster (Ted's favorite Sesame character as well).  The book he loved most featured the Sesame Street babies and it was about what helps them get to bed.  "Burt snuggles with a blanky, Elmo has a bunny...."  Max really responded to these characters.  In the last few weeks before he died, I would have him sit facing me so I could watch his face when he read.  He would look up at me and smile once in a while too.  My heart would soar!  Earlier on, I took photos of him looking at his books while I read.  I wanted to see him face on to confirm that he was really engaged.

He is so cute, it makes me crazy!  I LONG to read to my little monkey.  I am dying to move on to some of the books for babies over one.  I am SURE he would still love Goodnight Moon.  Maybe he would be ready for Pajama Time now.  We had started a few books with textures, a fuzzy chick, a rough haystack.  It's all gone.  I just sit here dismayed.  Everything we had together is gone.  He is only in my memories and in photos now.  It will never be the same.  I will never get to start a longer book and read him a chapter every night.  I will never hear him start to read on his own.  It is all over.  All I can do now is continue to read to my memory of him, to sit in his room, or at his gravesite and keep reading his books.  I miss you so much Max.  You were the best little guy ever and I hope you know I cherished every single moment we had together and always will.  I love you Max SOOOOOOO much.