Passover

I can't even begin to tell you how much I love Passover.  It is just the very best holiday in my mind.  I look forward to it every year.  I start counting down the day after it ends.  It is better than New Year's Eve.  Better than Christmas (I think?).  Better than Hanukkah for sure!  For over ten years now, my friend Greg and I have been hosting a Passover dinner with 20+ people.  To be honest, this tradition started before me.  Greg and Robyn hosted it for several years in San Francisco, before it (and Greg) moved down to LA.  We started off in my Rexford apartment and then moved it over to my mom's house when I moved to San Francisco. I came home for this event during the years that I was away from LA.  It was THAT good.  We've had to make some cuts through the years as people got significant others and stuff just because we don't have the space.  If you've been cut, it isn't because we love you any less.  It was because the actual Jewish people at the table started hooking up and we had to make room for their better halves.  Please forgive us.  Passover 2010, I was eight weeks pregnant.  I knew that there was no way I would get away with not drinking for the night without everyone knowing so I just decided to tell.  2010 Passover gave new meaning to barefoot and pregnant.  I was on my feet so much that night that I finally just ended up in the kitchen, doing dishes, barefoot.

Every year, Greg makes his much talked about and salivated over brisket, I make the matzo ball soup and the random other stuff, Kate brings charosets (sometimes Suzy brings it.....Suzy is part Jewish in case you didn't know, Kate....eh, not so much), Bonnie makes macaroons (or at least she did once or twice and I can still taste them...so good!), Tamar used to bring chocolate dipped matzo (before she went vegan), Carmen does all sorts of extra stuff, Maggie always brings a delicious dessert, everyone brings wine.  My mom has been kind enough to host us for many years now.  It is a production.  We bring out fold out tables, tons of folding chairs, linens, china, seder plates, wine goblets.  The highlights of the evening are 1) the line in Greg's grandfather's Haggadah : "Moses was such a man!" 2) Passover tunes to the melodies of songs you'd rather forget (courtesy of my dad's annual Passover seder) 3) The "drinking game" where you have to say as much of Hag Gad Ya in one breath as possible.  If you mess it up, you drink!  4) The afikomen hunt.  Everyone puts in a dollar and the hunt gets competitive.  5) Sometimes we do another dollar each bet on how many bottles of wine get consumed.  I know it sounds nerdy.  I guess it kind of is.  Especially because most years, it turns into a jacuzzi/dance party for the late nighters.

2011 Passover was the first one with children.  The first and only one with Maxie.  He was so good!  He hung out for the first part of the evening and then we put him upstairs with a white noise machine (to drown out the downstairs revelry) and a video monitor.  What a pumpkin!  We won't be celebrating Passover this year (not with my dad's family, not with my friends).  Same way we aren't celebrating any holidays this year.  It's a tradition that I hope we can bring back again sometime in the future but the thought of it makes me so sad.  I don't remember what it was like to be this happy.  Ted and I have aged 20 years since this time last year.

Here are some photos from last year and a video from 2010 - not sure this really captures the flavor of the evening but it is a taste.

Delicious Fingers

This time last year, Maxie was six months old.  He had just started eating solid foods.  He really liked attention and he got a lot.  He liked chewing on his little fingers (and anyone else's he could get in his mouth).  Have I mentioned what an easy baby he was?  Perfect in every way.  I miss you SO much my Maxie!  Life's no good without you here.  You are all I ever think about my sweet.

Who are the "Mourners of Zion" and why do they keep following me?

Ever since Maxie died, I have been receiving cards and emails with these words, "I am so sorry for your loss.  May you be comforted among the Mourners of Zion."  I am sure I have written these words as well in the past, not really knowing what the hell I was writing but knowing that it is what you are supposed to write to other Jews when someone dies. All I can say today is, I have no idea who these people are or why I would find comfort among them.  I mean, ok, I know what is being said.  That somehow knowing that other Jews have suffered loss should somehow make me feel comforted.  Or perhaps, we are like an unofficial "grief group" of sorts - all of the sad Jews.  Even though our losses may be totally different.  Even though we don't even know each other to give one another comfort.  The point is that other people "of Zion" are grieving and we should find comfort together.  Perhaps it is an admission that only a griever can understanding grief....a meaningful way of saying, "Listen, don't look at me!  I have NO IDEA what you are going through.  But, I am going to jot down the name of this group.  You should give them a call".  Mourners of Zion.  Sometimes it feels like this is just one more group of outcasts - now we are part of yet another crappy club and again we don't know the rules, who is in charge, and how we all got here.  Other times it feels like another misplaced suggestion or generalization - meant to console but really only serving to "fire me up".  It reminds me of when a board member of mine approached Ted at Max's Shiva at our home to tell him, "You know, children die in Israel every day."  I still can't figure out if that was meant to be a comfort (it wasn't....it was more like a slap in the face).  Ya, Buddy!  Children die all over the world every day!  Thanks for the 411!  Sometimes the reference makes sense in my mind - there are so many mourners of Zion, because the Jews have suffered a long and difficult history- from the destruction of the First and Second Temples to the Holocaust, there is certainly no shortage of "Mourners of Zion".  In the book that I wrote about last week "Against the Dying of the Light", Leonard Fein talks about a desire he had to be able to count his daughter's death amongst the more "meaningful" deaths....like if she had been part of a suicide bombing or something.  Not that he actually wished that upon her or on anyone for that matter but more like a way to try and make sense of the tragedy - to put it into a greater historical context.  Her death, like Max's death, is in the context of nothing.  Max's death was meaningless and only serves in the greater context of one more SIDS death.  A death that makes no sense and has very little impact in a "National" sense.  SIDS deaths make up such a small percentage of deaths anyway that hardly anyone pays attention.  Would the Mourners of Zion even welcome me into their club?  I would have more in common with a Scientologist who lost a child to SIDS than with a Mourner of Zion, wouldn't I?  I mean, wouldn't I get more out of a comforting interaction with a Buddhist who lost a child than a Jew who lost a grandparent?  The answer from my end is yes.  I'd like to look up my former board member and ask if he can put me in contact with any of the bereaved parents in Israel that he was referring to, as I would actually like to speak to them.  I have a feeling, however, that he simply wanted us to know that we are not alone.  He either meant it like, "Get over yourselves.  Children die in Israel every day." or "You are in the company of our brethren in Israel, where children die every day".  Considering he was in the middle of a gigantic bite of corned beef sandwich, it doesn't really matter what his intention was, it felt to Ted like the former.  We are pretty sure that this particular guy and his wife came over here for the snacks.  They snacked down through the whole mourners kaddish as well - an appropriate time to put down ones sandwich for a couple of minutes.  Anyway, this Mourners of Zion business has been plaguing me for months and I decided that it was simply time to share.  Sadly, I have not found much comfort in them specifically although there are many groups of other Mourners that I have managed to find some comfort in.  For now,  I am grateful to those Mourners.

It's complex - all of it

I was reading another bereaved mother's blog yesterday.  She was talking about her current pregnancy, with twins.  She was saying that she was glad she had been taken off bed rest, which she had been put on temporarily.  She was happy to have made it to 30 weeks and was relieved that the babies look very healthy.  She also talked about how hard this pregnancy has been, how sad she is to have to face another holiday without her beautiful daughter, how much she worries about her unborn babies.  There were only a couple of comments.  They said things like, "So glad that things are going well for you....".  All I could think was, did this commenter and I just read the same post?  Another blogger, who just commemorated what would have been his son's fourth birthday wrote a beautiful post about how much his son loved birthdays.  He included videos of his son singing happy birthday and helping to blow out birthday candles.  Tears were streaming down my face as I watched this wonderful boy relish the excitement of his second birthday party.  The first comment on that blog wished the blogger moments of joy on the occasion of his dead son's birthday.  Do you need to be a bereaved parent to know how impossible joy would be on such an occasion?  I get emails and comments like that all of the time and I wonder if somehow the point of my post was missed.  Likely in many cases, it is.  Yes, again, I DO know that most people are only trying to offer what comfort they can.  Much of the time, they really aren't up to the task of saying "I'm so sorry that your son died so young.  It is so unfair and my heart breaks for you, your son and your family".  I am lucky that I have so many friends and readers who do say those things.

Still, I feel that I often don't do a very good job explaining my feelings or what is happening in our lives.  A friend of mine who reads my blog every day and with whom I email quite a bit as well, wrote last Friday to ask if we thought there was some genetic reason for Maxie's death and wondered if that's why we are doing genetic testing.  I have been writing about it for weeks.  Since even before announcing Baby M on my blog.  How did I manage to not explain that, indeed, that is the reason why we are doing genetic testing?  I feel so silly.  I wonder how many other people didn't get that.  The posts about my fears and the trauma of every email and phone call I get from the coroner and the geneticist probably don't make that much sense to those of you who don't get it.  Sadly, I don't really feel like explaining the whole thing again so, it just is what it is.  Either you get it or you don't.  I thank you for even trying.

Sometimes I am cryptic, for sure.  Someone has said something hurtful (or acted inappropriately since the start of this horror) and I don't want to sell them out, but I want to express my feelings about the incident.  It comes as no surprise on those days when I get lots of confused emails.  Often I get emails from people who think I am talking about them.  Very rarely does the actual culprit actually acknowledge that it was their blunder (though, to be fair, very few of the culprits read my blog).  But, when a mother writes about her fears and the horrors of living without her child, even when she mentions a couple of positive things (that most of the population takes for granted) - like that both of her unborn babies look healthy at 30 weeks, she isn't really "doing well".   It's complex, I know.

So, speaking of complex - Ted and I are going on vacation this Thursday.  We will be gone for six days in Cancun, Mexico.  We are both so jazzed and at the same time, this isn't a regular vacation.  I know it is tempting to be "jealous" of us.  Maybe put it into perspective, if possible.  I think we are finally ready for a vacation from this life!  We weren't ready when we went to Catalina in September.  An island full of happy families with adorable children was a kick in the gut all day, all night.  This time, we are staying at an adults-only inclusive resort.  We will spend lots of time in the pool and ocean.  We will snorkel, eat and drink (real drinks for Ted and virgin daiquiris for me), kayak, soak up the sun, read (I checked out two "Life after Death" books and "Chicken Soup for the Grieving Soul" from the library on Friday), and hopefully laugh.  We know that "wherever you go, there you are"...but going to paradise has got to count for something I would think.  There is something truly out of body about planning a Cancun vacation while mourning the death of your child.  You want to take care of yourself but it feels so incredibly inappropriate in some ways as well.  I am not sure if I will be able to blog (but I have a feeling I will find a way).  I am definitely NOT planning on checking email (something I was unable not to do even when I was away for my own wedding).  I am thrilled that there won't be any children there. That alone is worth the whole cost of the vacation.  Though, I worry that people will ask me about how many children I have....my big pregnant belly is sure to be a conversation piece.  We have decided that we will just answer whatever questions come up.  Our story won't ruin more than a few minutes of someone else's vacation.  I plan on doing my best to contain my grief as much as possible while we are away but to forgive myself if it becomes to unbearable to ignore.  I'm sure we can't even imagine what scenarios might slap us in the face when we aren't paying attention.  I am hopeful that it will be an escape...and mostly that it will help the days go quicker, they always do on vacation. Ted reminded me that by the time we get back, there will only be a little more than 100 days left until Baby M gets here.  Still, of course we won't want the vacation to end.  Who ever does?  Vacation - bittersweet and complex- but definitely a welcomed distraction.

Sweating the small stuff

My mom gave me a book a few years ago entitled, "Don't sweat the small stuff - and it's all small stuff".  While I actually think the book was sort of genius in its powerful message, the title makes me angry today.  As a matter of fact, it is NOT all "small stuff".  Some of it is really really BIG, life altering, catastrophic stuff.  The problem is that most people do not know how to separate the small stuff from the really big stuff.  For most people in our society, it is all big stuff.  We are so used to maximizing the drama of the insignificant that when something really big actually happens, we have no concept of how to deal with it, so ironically - it gets minimized.  I actually remember having the thought many times during the week of Max's Shiva that, if nothing else, perhaps we'd all (meaning my circle of friends and family) learn to keep perspective.  I thought Maxie's death would change the way we all looked at life.  That perhaps the small things would stop being gigantic obstacles to overcome.  That everyone might look at their own lives and feel a sense of gratitude.

Being married can be challenging, even in the best circumstances.  We all have traits that push our partners buttons.  After suffering so great a loss, we are less able to edit ourselves.  We bleed vulnerability.  At times, we are more truly ourselves with each other than we had ever been up until this point.  In one sense, it is reassuring.  "If he loves me now, while I am such a mess, he must really love me", is what I often think.  I try to do small things to make up for our loss - to try and bring some happiness or, at least, normalcy to our daily lives.  I make dinner most nights, I pack his lunch for work most days.  He does lots of little things to show me how much he is here for me as well - he brings in all of the groceries so that I don't have to carry a thing, he thinks about my needs while he continues to design the details of our home.  At the same time, I am not as aware of my most annoying habits - the ones that might make him cringe.  I am also often in so much pain that I can't contain it.  There are times when he has had a decent day of distraction at work and then comes home to find me curled up on the couch, where I've been for hours, wailing my cry of despair - "Why us?  Why Max?  Why did he leave me?".  He then has to choose whether to save himself by going in the other room, turing on music or sports or reading something distracting....or try and save me (nearly impossible) by sitting down next to me, and putting an arm around me while I cry.  It is so hard to get to a place each day of non-despair that to have that protective barrier crumble at the site of our grieving spouse makes us feel powerless.  I can see why so many marriages break under the stress of this loss.  Ted and I, it seems, have both decided not to sweat the small stuff.  For us, there is so much BIG BIG stuff that nothing else matters.  The small stuff is just a distraction.  Maybe the small stuff even helps take our minds off of the really terrible stuff from time to time.  Can I even say that there are moments when the small stuff I used to sweat comes as a small blessing today?  I can.  It's true.

Obviously, Ted and I are the ones most affected by this loss.  I am ashamed of the small things that used to stress me out.  Truly.  Having Max put so much of that into perspective, but I still stressed out about work and other responsibilities so much.  Whatever stress my days brought though, it mostly melted away as soon as I saw my baby in the evenings.  He calmed my nerves and soothed my soul.  And, I KNOW that the things that consume YOU so much of the time, seem SO big.  They aren't.  I know that it isn't my place to say it but that is my perspective.  I have the misfortune of knowing how good you have it, even if you can't see it yourself.  I know it sounds cold but - If you are looking for a sympathetic audience in me, chances are that you've come to the wrong place.  I still know the pain of true heartbreak.  Obviously, I understand the grief in great loss.  Don't think twice about calling me to talk about the despair you feel in your current life situation, if despair is indeed warranted.  But, and I am sorry to say it..... - most of your complaints and drama go right over my head.  I don't register your pain at all.  If your complaint is that you have to make Passover dinner for your family and friends - my thought is how nice it is that you have people, that you love, to cook for (and if you truly don't want to do it - chances are, the people who come can feel that - so don't put them through the agony.  Nobody wants to have dinner at the home of someone who feels "put out" by having to have guests).  If you want someone to vent to about having to juggle your children with everything else going on in your life, you've gotta know to look someplace else.  How lucky you are! (and if you don't see it, I REALLY DO pity you).  If you have a leak in your roof or your blackberry broke or you got stuck in traffic and were late to an important meeting - you'll get over it.  I know life is full of inconveniences.  We ALL have them.  My heart is far from bleeding for you.  Sometimes we all have bad days - flat tires, bad waitress, or we just feel under the weather.  Take a minute.  Think about what you DO have.  I know you won't, but I figured I would try.  If you insist of focusing on how life has inconvenienced you - find someone else to complain to.  You haven't learned a thing.

Baby M's name

I have been asked by many friends about Baby M's name.  It is a secret but, yes, he already has a name.  Even at home though, we call him "Baby M".  We are both a little superstitious and we don't really want to hear any opinions.  No negative "Ju-Ju" around this kid.  None at all.  Maxie's name was originally going to be Judah Maxwell Leviss but we made the mistake of telling people who told us that they didn't like the name Judah.  Honestly, I am not sure we cared that much what other people thought, but we did like his name better when we switched it up.  Still, who needs it this time around?  We like Baby M's name.  And, no, it isn't Maxie (that would be kind of weird, no?).  You can certainly feel free to keep sending me suggestions.  Perhaps we will like one of them enough for the next Baby Leviss, but this time around, we've got it covered.

AND - it isn't the name of any of the Fleishman, Leviss, or Thomson pets!  We have a long history of having pets named after people and people after pets.  Sometimes we are aware we are doing it and sometimes we aren't.  In the case of Jake (our Goldendoodle), he just came with that name.  Same name as my mom's brother - Uncle Jake.  Then Paul adopted two little dogs and asked Ted if he minded if one of the dogs were named Ted.  Ted said that, yes, he minded.  Paul didn't let that stop him - his boys are Bill and Ted.  My mother's father was named Bill (Chadney, of "Chadney's" restaurant in Burbank - for the locals).  My mom loved Jakey and decided to adopt her own goldendoodle - Ben (Ben and I are not the best of friends but he is certainly cute).  Ben is also Uncle Jake's son's name and my mother's grandfather's name.  She also has two standard poodles - Camille and Stella.....so, imagine our surprise when my niece was born a few weeks ago and we found out her name is Camille Bella!  As much as Ted and I have laughed about this human/pet name insanity, we did the same thing - it was months before we realized that Max had the same name as Paul's longtime companion - Max, his cat!  The fact is that at this point, there are very few pets in our family that don't share their name with a family member - Layla, Lola and Lucy (our dog and my dad's family's dogs)...are the last pets standing (with unique names).  Stella too, I suppose, but it does rhyme with "Bella" so I am not letting her off the hook.  No, Baby M will have his own name that he will not share with a dog or a cat.  Maybe everyone can hold off on getting new pets until August....or at least, check your names with us first!  Thanks.

Surrendering again

The original wound was reopened when we learned of the potential that Maxie's death might have been caused by an inheritable gene.  The scabs that had started (barely) to form, were torn from our flesh and we began to bleed all over again.  I began to bleed profusely.  The trauma too much to contain.  The responsibility for Baby M's life too much to bear.  With each new stupid email exchange and each new fork in the road, I have felt this life that I have been working so hard to contain, start to spiral out of control.  There is nothing that I hate more than a lack of control.  It is why when you and I make plans, I am usually early.  It is why I won't go to the grocery story without a list.  Why I don't pack for a vacation without planning out each outfit ahead of time.  I don't go into a meeting without a plan.  I don't wait for life to unfold, I long to be the creator of my heart's greatest desires.  I never just dated someone who I felt lukewarm about, hoping for my feelings to turn around.  This control freak in me has served me well in most cases - I am ambitious, I find mistakes before they happen, Maxie almost never showed up without the proper clothes, food, diapers, medications.  I get bills paid on time.  I meet deadlines. I am convinced that I am pregnant today because I religiously used my fertility monitor because there was NO WAY I was going to miss an opportunity to bring happiness back into our lives.

 I had an epiphany two days ago though, that I hope to hold on to - that I hope will serve me again, as it did once before.  I need to let go.  If I don't surrender, I will probably go insane....literally.  I have come up with plans and back up plans for what happens in the every case scenario of our lives.  I have spent HOURS researching SIDS, frequency of multiple SIDS cases in families, fatty liver + SIDS connections, metabolic diseases.  I have written long emails to the geneticist (I am SURE he loves me) with links to scholarly articles citing fatty liver issues in infants and potential risks and remedies.  Here is what I realized - infants have been dying since the beginning of time.  In fact, next week starts Passover (previously my favorite holiday, but another one I won't be celebrating this year), where we recount as part of the story that all of the first-born Jewish sons of Egypt were taken by the angel of death.  How close Moses also came to dying as an infant...I have wondered often how his little reed canoe didn't tip over into that polluted Nile River water before he was found by the Pharoah's daughter.  But, back to my point, babies have died inexplicably since forever.  Their parents mourned and wept and were never the same.  Those same parents, in the absence of autopsy reports, just crossed their fingers and had more children  - praying for the best possible turn of events.  Hoping against hope that THIS baby would live.  A friend's mother wrote me recently and told me that Robert Frost lost 4 out of 6 children.  I haven't fact checked it, but it is unimaginable.

I have been to the grief groups and participated in the online support sites.  I know that this calamity can hit any family - families too emotional to even look at the autopsy report, families with not enough English skills to read the autopsy report, families with nowhere near the resources to pay for expensive genetic testing, families who do not have the time or interest or capacity to sit and read hundreds of scholarly articles about the various ways that children die.  The genetic testing that my whole soul depends on is a test that wasn't even available to the public four months ago!  How much more can we do really?  We are doing everything we can! Does this mean I will stop my search?  Probably not.  I know that my love for Baby M would drive me to move mountains to keep him safe and alive.  But, I cannot alone feel the weight of this responsibility.  There is nothing more that I can do really except surrender.  I surrendered once before, months after losing Maxie.  Finally realizing that nothing I could do would bring him back.  When I finally surrendered to that - I felt a calm that I hadn't felt in months.  Not the kind of calm you usually feel (even though you don't realize you are calm because you are so worried about stuff that wouldn't really matter if you could take a step back).  But - then the aftershock came - like a Tsunami - knocking me off balance again - throwing me back into the unrelenting waves of pain.  I need to stop paddling against this current and let it take me wherever it is that it is pulling me.  However painful that may be.

Don't think I don't have a backup plan though - I'm still me.  It is a backup plan that I can't believe I didn't come up with earlier.  It's so obvious and it was a plan Ted and I thought about pursuing before the earth caved in on us.  If all goes upside down and god turns his/her back on us again - you will be able to find me in Israel (truth is - you might find us there if all goes perfectly according to plan- it suits us in so many ways - now more than ever).  I know that I will not be the only one there suffering from Post-Traumatic Stress.  Tragically, I will not be the only bereaved mother.  I will not be the only one who isn't smiling from ear to ear and pronouncing that "everything will be fine".  My new prickly ways will fit in just fine in the land of the Sabras.  My less than Wal- Mart disposition will be like every other person I am fighting with to get on the bus - the bus that feels as insecure as my heart does.  I will abandon the story of my individuality to be part of a much bigger story and that is where I will find myself again.  I am sure of it.  (oh, why did the kibbutz movement end?  I could SO use hours of my old work in the banana fields).   Plus, I love it there and I will be able to spend weekends reading under the shade of Maxie's Forest.  When people come back from Israel and tell me that the Israelis are unfriendly people - I smile, knowing just how wrong they are.  They are the warmest people - they are just protecting themselves...the way I now protect myself.  No more fake smiles.  No more false reassurance.  My back up plan and my surrender have given me a little more peace of mind than I thought possible at this stage.  My heart still aches for Maxie though.  Aches and aches for my little smiling boy.

Maxie Moo-mers

I haven't written about my little monkey in a little while.  It nearly makes me too sad to think about how perfect he was...how MUCH I love him and ache for him.  But HE is the reason that I write this blog.  HE is the most important person who has ever entered our lives.  HE is the one whose life our lives still revolve around - even in his absence.

This is the photo evidence of our first cuddle.  Mommy and baby.  TRUE LOVE.  When he was laid on my chest, I was consumed with love.  THIS was the little creature that had been crawling around inside of me all of those months.  THIS was the little baby I waited my whole life for.  Our future flashed before my eyes.  It was long and it was rich.

This is my sweetness, sleeping so sweetly.  This is the photo we have framed in our room.  The one that I wish "sweet dreams" to every night.  This is my baby as I remember him most peacefully.  This is my beautiful baby.

Look at my pumpkin.  What a cute phase.  One I knew would embarrass him when he got older, but one that I knew I would cherish for a lifetime.  This baby was too special.  Perfect in every way - even perfect in his need to have his little headed rounded out.  Too cute.  I am smiling as I write these words.  My heart is soaring out of my chest with pride and love.

My favorite photo.  My greatest love.  Maxie Judah - there is nobody cuter than you, my love.  Nobody whose life has touched my soul like yours.  Every day without you is an eternity.  My sweet boy - Why did you leave me?  I can't go on without you.  Promise me we'll be together again.

Happy boy!  Your daddy and I, once so happy, are now so sad.  If my own sorrow doesn't melt my heart, the sadness I see in your daddy's eyes will surely break me (if I do not break him first).  I had a memory this morning of our morning routine.  Of the very last part, where daddy carries you into our bedroom after he has picked out your outfit for the day, changed your diaper and dressed you.  He carried you sitting in his arms, facing outwards.  You would come into the room, both facing me....both looking so proud!  Your face saying, "This is my daddy".  His face saying, "This is my son".  My heart screaming - "This is my family!".  I love you, my monkey.  More than any of these words will ever show.

Attempting to mend the chaos

I just finished a book by a hero of mine.  "Against the Dying of the Light", by Leonard Fein.  Chances are you probably don't know who Leonard Fein is, but you might.  He served on the board of a couple of the organizations I have worked for in the past.  While he considers himself a secular Jew, he is deeply entrenched in the richness of the Jewish community.  He expresses his Judaism less so through a worship of god than through a devotion to "Tikkun Olam" (repairing the world).  In his book, he quotes Emmanuel Levinas, the French Jewish Philosopher.  "'To know God, is to know what must be done.'  In that sense, feeding the hungry is a form of worship. (In Hebrew, the word 'Avodah' means 'Service', both in the sense of work and in the sense of worship)."  This is my take on Judaism.  I have never given much thought to God (except on airplanes or on crowded Israeli buses in times of Intifada), but I have lived "Jewishly" in my desire to help repair the world.  Fein is the founder of Moment Magazine, and Mazon: A Jewish Reponse to Hunger.  He is engaged in an ongoing mending of the social order and a quest for social justice.  He is someone who inspired me as a graduate student and beyond... and he is a bereaved parent.  This last fact about him is not something I knew until a couple of weeks ago.  During one of my daily internet investigations, where I google all things related to my loss including, but not limited to - SIDS, metabolic disorders in infants, siblings of SIDS + survival rates, life after death, Near Death Experiences, grief, loss, resources for bereaved parents....you get the picture, I came across the title of this book.  This book about a father's loss of his daughter.  This book by Leonard Fein, who I never even knew lost a child.  Now, he doesn't know me from Adam and my worship of him has been from afar (just like many of his Jewish student disciples).  I could hardly wrap my brain around such a GOOD man, of whom I knew nothing until the early 2000s, having lost his daughter in the mid-nineties.  Can someone actually move forward enough from a loss like this that they continue to care about changing the world, when the world has done them such an injustice?  I can't imagine going back to a place where I care about mending the world when I can barely imagine the mending of my own heart.

There are pieces of this book that have helped me to articulate my experience in a way that was unavailable to me.  While I have cried out loud among others and in the emptiness of my own home, "Why Me? Why Us? Why Max?", I have been met with no answers - from counselors, from doctors, from god.  Fein talks about where this comes from - "Back in the hospital, the chaplain apologized: 'I have no answers,' she said.  And I replied, 'I have no questions.' Not 'Why?' or 'Why her?' or 'Why me?'  These are not questions, they are cries of anguish.  For surely there is nothing we know by now with greater certainty than this: Every moment of every day, the spinning wheel stops somewhere that it is not supposed to, somewhere that makes no sense.  Every moment of every day, somewhere, a parent is bereaved, a child is untimely orphaned, a dream dissolves.  This time, the wheel stopped here."  This time - the wheel stopped with Teddy, Maxie and I.  There are no answers, even if the questions remain with me for a lifetime.

The finality of Max's death - of his being gone from me, from my arms, from my protection FOREVER.  It is incomprehensible.  I keep thinking - If I can just get through this part......  What part?  This part is the rest of my life.  I have to just get through this life.  And, when the comparison comes from others of losing parents and grandparents and other loved ones of greater generations, I feel misunderstood....though I know the deepness in that grief as well.  "The utter sadness adds, I think, to the incomprehensibility of what happened.  And that incomprehensibility, in the end, is among the most distressing and enduring aspects of the tragedy.  Over and over again, I review the events of that day.  Over and over, I come up against an impenetrable wall.  There is no way around that wall, no way to tunnel under it or climb over it, and it stretches endlessly.  No, I do not feel that way about my mother and father.  They were buried at the end of life's path.  And though I cannot walk that path, they are where they are supposed to be.  Not so Nomi (his daughter)."  Not so Max.

At the end of the book, Fein writes a letter to his granddaughter, who was only 16 months old when her mother died suddenly and unexpectedly.  Here is where he answers my question as to HOW he can go on soldiering for justice and good in the world, while suffering so great a loss.  "There is one thing of which we may be absolutely certain: If we react to apparent randomness, by withholding our kindness - after all, what purpose do these serve if all there is, is accident? - we add to the world's chaos.  And it's true: There is no guarantee that our effort for good will change anything, will have any enduring impact.  But the absence of a guarantee is not an argument. On the other side, our refusal to enlist in the ranks of the worldmenders, whether in large ways or in small, ensures that the world will go unmended."  While it breaks my heart to know that it is families like Gavin's who are committed to bettering their community for other families, while themselves in the midst of their own tragic loss, it is precisely the randomness of this loss that urges families like ours to "enlist in the ranks of the worldmenders".  In a world where we don't know what horror (or blessing) may next befall us, we are obliged to continue on a path to at least TRY and organize the chaos - to prevent more of these blunders or to at least bring happiness and joy to those who can still enjoy them.

For me, the personal chaos feels too large every day to mend.  I spend most of my waking hours trying to understand what happened to Max so that I can prevent the same thing from happening to Baby M.  I wish I could surrender, as everyone else around me has, it seems.  I wish I could simply say, "He will be fine" and leave it there.  But, that isn't good enough for me.  I have to KNOW he will be fine...something that it seems, I cannot possibly know.  And, yes, there have been those who have been quick to point out that we never know what will happen next - there are random accidents, and shootings and natural disasters.  This is true.  I know it.  Am I the only one who can admit that this situation is different?  I haven't yet had an honest conversation with anyone about Baby M.  A conversation where we actually sat down with the risks and the numbers and tried to intellectually understand what Baby M's chances are.  Too scary I suppose.  Nothing scarier than what has already happened.

Still, I know I won't make it if I had to go through this again.  Would I still be standing and here physically?  Perhaps.  But, I would likely be "done".  The parts of the original me that still exist would be gone.  So much of me already gone when Maxie passed.  So, part of my need to save Baby M, is the hope that I can save myself.  Perhaps even regenerate some of who I used to be.

I heard from the UCLA lab this morning.  They are processing Max's blood.  They still don't know if the sample is "good".  They decided to try and process it regardless.  They are making an exception in  using Max's blood because they usually only run this test with "fresh" samples.  Not possible in the case of a dead baby.  I am trying to be patient.  Trying to feel hopeful.  Trying to calm the chaos in my mind.  So far, I am failing.  But, every day is a new opportunity to try.  Today I will try again. For the sake of my marriage.  For the sake of my sanity.  For the sake of the little kicks that I feel inside of my womb - reminding me that hope is on the way.

Dead like that

Thank you for reading my blog.  You make me feel heard when I learn that you are reading about our story.  You save me from having to tell and retell the stories that cause me the most agony.  You let me know that I am important to you, and that what happened to Maxie and to us, affected you as well.  I have no illusions that this blog is a delight to read.  I know full well that it is hard and sometimes disjointed and that the things we are going through are easier to turn away from than to come back to day after day or on any kind of a regular basis.  Thank you for caring enough to want to have a sense of what life is like for us since Maxie passed.  You also help me to ensure that Maxie's spirit doesn't die...that just because he is "dead", doesn't mean he is gone.  He still gets to live through our memories of him and the special impact he had on all of our lives.

Lately, several people "close" to me have told me that they don't read my blog because it is too depressing for them.  It hurts my feelings.  The people who tell me this are almost always the same people who urge me to move on, stop thinking about Maxie and get over it.  These people, who can't bear to hold our pain for the 3 minutes it takes to read about it each day, seem to have no concept of the fact that we are living this pain 24 hours of each day.  Or perhaps they do understand, but they invite me to join them where life is more cheerful - in the world where we don't have to think about the fact that Maxie died unexpectedly at daycare in July.  These also tend to be the people that stare at me blankly while I tell them about our genetic testing drama and then try to "cheer me up" by telling me how much joy Baby M will bring into my life.  I try to avoid these people the way that they avoid me (even though they don't realize that by avoiding my blog, they are in fact, avoiding ME).  The truth is that if you aren't checking in with me personally and/or you can't check in here once in a while to see how we are doing, then you probably don't really want to know.  You probably don't really care.  We both know that.

I often wonder how these people will want to interact with us once Baby M gets here.  Some of them are people that I cannot avoid.  They are connected to me by family or marriage or part of an inner circle that I am part of as well (or, at least, hope to be once again one day). Will they tell me how cute Baby M is?  Will they acknowledge that he looks like his big brother (if indeed he does)?  Will they pretend like nothing ever happened and our relationship is the same as it was before Max died?  Will they offer to babysit, like they did with Max?  What they may not realize is that our relationship will never be the same....just as I will never be the same.  I actually wouldn't want someone to be close to my child who wasn't devastated by his brother's passing.  I can't explain it, but that is how I feel.  I have read that "To mourn is to love".  It is true that I believe if you didn't mourn Max's death, you didn't love him.  I wouldn't want you to try and be close to Baby M because I know that it wouldn't be real closeness anyway.  I am fairly certain that these people don't know what real closeness is.  I know full well that even if I thought I was close to these people before, I wasn't.  I am not saying that there won't be room for them in our lives in the future in some way...but it will never be as it was.  They aren't who I thought they were.  Plain and simple (and in some cases, I always knew that they were shallow, but I tried repeatedly to give them the benefit of the doubt).  I don't want Baby M on their laps, I don't want them to babysit him, I don't want him to be fake loved by them.  I want him to know real love, the way it should be.  It will be hard enough for me to let go of him - to not have him in my arms at all times.  It was hard enough with Max, to be honest.  But, I made a decision with Max that I would let him choose who he loved....even if I didn't love the people he chose.  My decision with Baby M is to be careful with him to start.  To keep him safe from the false, shallow, smiles of those who do not care for as long as I can.  At 38 years old, I wish there was someone protecting me now.  I have been "cleaning shop" for months.  I will not work hard to make these people feel comfortable anymore.  They do not care about my feelings so why should I care about theirs.  If they did, they wouldn't tell me that my blog is too depressing for them....they wouldn't tell me that "none of the comedians were very funny at Maxie's Benefit"....they would tell me that they miss Max and that they are sorry every day that he is not here....they would not bypass this important step interacting with me so that they can get quicker to the step where they tell me all about themselves.  These people are unavoidable.  I will continue to see them every so often.  We ALL have to interact with people like this at some level.  And, some of them I might be stuck with for life.  But, I will guard my heart from them even more after Baby M gets here.  As Ted has said about a few of these people - "they are dead to me now".  Dead to me, the way that Maxie is to them - Dead in the sense that they do not acknowledge him, love him, care about his story, care about our story.  As a consequence of their inability to care, I don't care about them either.  I just DO NOT CARE.  Their incapacity to love us in our broken state makes them dead to me.  They are dead to me like that.

These days

My heart aches this morning.  Have you ever missed someone so much it is actually painful?  This is like that - but worse.  Knowing I will never squeeze him again.  I will never squish my face against his.  How can I continue on with this knowledge?  Every day.....more pain.  It is time for me to find a new resource, as my therapist/spiritual guru is no longer a comfort.  I adore her as a person, but I am getting tired of trying to justify my grief every week.  She helped me in so many ways for so many months but she expected me to be "cured" by now and we are both disappointed that things aren't going the way we hoped.  Frankly, I have known all along that I wouldn't wake up any time, this soon, done with my grieving.  Considering nearly every bereaved parent I have met has told me that it is something that you never get over, I knew I wouldn't be "over it" in 8 months.  Throughout this painful journey, there have been things that have helped slightly for a little while until they just didn't help anymore: acupuncture, swimming, meditation, yoga... They all had a time and place for me.  Mostly they have just been ways to pass the time.  The question keeps coming up for me though - Until when (or what) am I passing the time?  Until Baby M is born?  Until Baby M makes it to 10 months?  and then 16 months?  and then two years?  Will I breathe again then?  Am I passing the time until I can join Maxie?  Ultimately, yes, but then what is the point of being here now?  I am here so that I can love my husband and second baby boy.  The fact is that I cannot (or am not) enjoy(ing) my pregnancy that much.  I am grateful to be pregnant.  I really am.  It is a second chance at happiness for us.  But, my anger about having to be grateful at a second chance at something that everyone else I know has been able to enjoy the first time around, without it being snatched away from them, is all consuming at times.  I feel so sad knowing that Baby M will never know Maxie and that Maxie will never know Baby M.  I feel so sad knowing that there is any chance at all that I could lose Baby M.  Last week Ted and our grief counselor convinced me to leave behind my plans for what happens if we lose Baby M.  As a planner, who has been sideswiped by something I never thought I would have to plan for in a million years, I want to know what my next step will be if I have to experience this again.  I think I understand now why it is better to cross that bridge if we ever need to and that hopefully, we never will.  Still, in the back of my mind, I can't help but question why I should ever feel confident in anything ever again.  I see photos of Ted and I in the hospital, the day that Maxie was born and we are so happy.  We felt so blessed.  We were SO blessed.  Max was the biggest blessing I could have ever imagined.  Loving him and being his parent, was SOOOOO much better than we could have even known.  Losing him has been the worst form of torture and punishment imaginable.  Anyway, I know I am not saying anything I haven't said before.  I am just having a really bad few days.  Just trying to get from moment to moment without losing my sanity.  Just barely clinging to this lifetime.  Just barely making it through these days.

I was his mommy!

I am slowly approaching that date where Max will have been gone longer than he was here.  I already feel like it was a dream that I was ever a mother.  I was a mother once!  I really was!  I woke up throughout the night to nurse my baby, and when he started sleeping through the night, I woke up early to slowly turn on the lights and welcome him into a new day.  I spoke to my baby in hushed tones while I carefully pulled him out of his crib and kissed his cheeks and told him how much I missed him and how much I loved him.  I wished him, "Good Morning Pumpkin."  I balanced getting him ready in the morning and getting myself ready.  I sat him in his bumbo chair and fed him  a mushy breakfast while I smiled and played with him.  I cuddled him in my arms and sang to him and played with him until it was time to walk out the door.  I took him out of his car seat and carried him into his daycare and smiled at him while he smiled at his babysitter.  My heart broke every day as I handed over my beloved baby, my most favorite person, to someone else to care for while I left to go to work.  I kissed his cheeks as much as I could before turning around and walking out the door.  I often cried once I reached my car, before driving away.  I checked my email all day long, looking for photos of my baby.  I talked about him to anyone who would listen.  I drove directly to pick him up every day, my heart full of anticipation.  I looked around the room for his cute face and found him smiling right at me, happy to see his mommy (me).  I brought him home and played with him and fed him dinner and then gave him a soapy warm bath.  I read to him and sang to him.  I rubbed his little back and played with the curls at the nape of his neck.  I kissed him like crazy.  I was his mommy!  I was a mommy!  Max was and is my baby!  For nine months, I lived in what has become a dream...but it was real!  It really happened.  I have to kick myself to remind myself that it actually happened.  If I remember the details, my heart breaks into pieces.  If I don't think about it, I want to die.  I can't believe this is life now.  I ache for my baby.  I long to be his mommy again.

The Gavin Project

I mentioned that two of Ted's best friends, Ryan and Keelin, lost their nephew two weeks ago.  Little Gavin Michael LaBella was only 16 months old.  He is the son of Ryan's sister and her husband.  He was a real cutie, and a twin - his sister, also super cute, is named Maris.  He also has a big sister named Gia.  I don't know Gavin or his parents personally, but Ted does and tells me that they are wonderful people.  You can tell that they are when you go to the website that they have already created to honor Gavin's memory: www.thegavinproject.org.  Ted found a Facebook page for The Gavin Project this morning and we laid in bed, looking at the cutest photos of Gavin and his sister.  Little Gavin is smiling from ear to ear in every picture we saw.  I can't tell you how sad it makes us to know that anyone we know would have to go through the pain we are experiencing.  It tears my insides out to think about a world without Gavin....and I never knew him!  His parents are raising money in his memory to make their town of Fairfield, CT (where Teddy grew up) a better place for the families who live there.  "The goal of The Gavin Project is to contribute towards the children's libraries, parks and playgrounds in the Fairfield community a place for individuals and familes to celebrate life."  I got chills when I read that.  I know how hard it will be for them to enjoy life in the coming months.  It got me thinking about all of the good that comes out of such dramatic loss.  I can think of no better way to celebrate the life of someone so loved than to share that love with the surrounding world.  It just seems unfair to me that while their mission is to improve life for other families, their family will forever be incomplete.  Like everything about loss and tragedy - there is nothing fair about it.  I like to think all of these little ones have connected with each other on the other side.  I hope Maxie is taking good care of Gavin and that maybe the two of them have hooked up with Marley and Lucy and Charlie and the other babies gone too soon.  Babies who I never knew, but who I have grown to love through the way their parents have honored and memorialized them.  Babies who should be here, snuggling in their parents arms, playing on the playgrounds and in the parks that the Gavin Project will make even better.  Babies who will never ever be forgotten and for whom their parents love will continue to grow until we meet them again.  

Another Kick in the Face

I spent a good two hours on Wednesday going back and forth with the coroners office and UCLA over email and by phone.  It started with an email on Monday with me to the UCLA geneticist asking if they had received Maxie's blood yet and whether they had determined that it was a good enough sample to run the exome sequencing test.  She had not received the sample yet.  She must have then wrote to the coroner.  By the time I got her thread of emails Wednesday, I could see that the coroner had written back and cc'd a colleague named Dan and said "I passed this onto Dan", who then wrote back to he thread with a cc to another coroner colleague named Joe saying, "I passed this onto Joe".  The geneticist wrote then to Joe and cc'd Ted and I saying that the sample needs to be sent immediately as it is time sensitive.  Dan wrote back and said, "I think that the parents need to sign a consent form."  I forwarded the email to my parents.  This is when my dad called to tell me he was calling down to the coroners office.  My dad spoke with "Dan" and told him if we needed to sign a form then he should SEND THE FORM!  The form was sent, I signed it and emailed it back (I cc'd all of his colleagues and the folks at UCLA as well) in 5 minutes.  Then Dan emails me directly to say, "How will the blood get to UCLA?".  WHY IS HE EMAILING ONLY ME?  It makes no sense.  Apparently, I am now the project manager on this case.  I write back to EVERYONE and say, "This needs to be figured out between UCLA and you all.", figuring that there has to be some sort of protocol for how they move blood around in this town.  But, no, UCLA calls me to say that they have no courier service, so the next thing I know, I am making plans to drive myself to the coroner's office (where my beloved baby's body was autopsied) pick up a vial of his blood (one of the last remainders of his earthly body), and drive it to UCLA myself.  But, first I called UCLA and gave them a piece of my mind!  We are paying $6500 to have this test done!  They can't get a courier service to pick up the blood?  I will PAY them for the courier service.  Two minutes later, she calls me back to say she will arrange it.  One minute later, I get an email from Dan telling me to call his cell.  I should know better ,but I call his cell anyway and I have the same discussion.  I tell him that this is incredibly time sensitive and he tells me that it doesn't need to be, the blood has preservatives and the sample will be fine.  So, after an hour and a half of this, I have left it in their hands.  They tell me that they are arranging it.  This morning I wake up to see that the original coroner who actually autopsied Maxie (and then passed the buck) has finally responded to the chain of emails from Wednesday.  He says, "Do bear in mind that this specimen contains no preservatives.  It has to be kept refrigerated during transport and handling."  I think I am going to lose my mind.  Is grieving the death of my son NOT ENOUGH??????  Do I really need these effing mini-dramas every single day to keep me on my toes?  I am sickened by his response.  Especially because, yet again, the email is only to me!  Have the people at the coroner's office not learned to use the "reply all" button?  Good thing I know how to use it!  I go back, get everyone's emails again and write this: 


Dr. Coroner,


This information comes TOO LATE! The specimen was sent yesterday.  The tests we are doing are TIME SENSITIVE.  I recognize that this is just another case to everyone else.  This is OUR SON!  This last remaining vial of blood was to be tested so that we could try and determine if there was something genetically wrong with him so that we could try and save HIS BROTHER, with whom I am five months pregnant.  This whole case has been handled with little to no sensitivity and with little to no regard to our needs.  I am PRAYING that the blood went packed in cold, but I have no way of knowing this.  I am unclear why everyone in your office emails me directly rather than communicating amongst yourself.  I AM THE MOTHER.  I was not at the coroners office yesterday packing up my child's blood to be sent to UCLA.  Why would you write me to tell me (a day too late) that the blood needed to be specially packed?  Also, I fear it wasn't packed in cold, as Dan Anderson, in my conversation with him on Wednesday, led me to believe that the blood did contain preservatives.  Geneticist N, when UCLA receives the sample, can you please let us know if it was packed and transported appropriately?  I am incredibly upset."


Again, words fail me.  I do everything in my power all day long to try to get back to a life worth living and I get kicked in the face every time I turn around.  


I wanted to mention how nice it was that everyone reminded me that they are listening yesterday.  I guess there are so many people telling me all of the time how "Baby M will heal" us!  Baby M has to live in order to heal us.  I think that is the part that people aren't hearing.  Then when I actually spell it out, they act like I am being dramatic or focusing too hard on the worst case scenario.  My son died with no warning.  HE DIED.  I am not being dramatic.  I am not "afraid to be happy".  I have a lot on my plate including intense grief and the BS never ends.  Thank you so much for listening.  I know it isn't easy to hear any of this.  I keep thinking that I am ready to stand up and I keep getting knocked down and I am not laying down and taking it either.  I am fighting every step of the way and I am SO SO tired.  So tired of this life I've been handed.  So ready for something new.

Back into the pit

I have fallen back into a dark hole.  I can't understand the purpose of my being here without my son.  I miss and long for him so much that the days are torturous to endure.  I saw this coming.  I knew that the event would be a distraction, and I knew that I would feel empty when it was over.  Nothing is a good replacement for being with Max anyway.  It feels like there is nothing left for me here.  But, I know Baby M is coming and I know that I need to stick around for him.  Still, Baby M without his big brother hurts my heart so much.  I won't even get into my fears surrounding Baby M's arrival again...I am not sure anyone is listening anyway (but I WILL mention that I found out yesterday that the coroner's office hasn't even sent the blood sample to the UCLA genetics lab yet.  The request was made a week ago.  The geneticist contact the coroner who had passed it onto someone else down there who passed it on to someone else down there, who doesn't seem to be doing anything.  My dad had to call the place and tell them to send the effing blood.  The whole thing makes me sick to my stomach).  I am trying to remind myself that I am just killing time until I am back together with Max again, but the time isn't passing quickly enough.  I keep wondering what I did to make god so angry at me.  I keep wondering why there was no guardian angel to intervene on behalf of my baby when he stopped breathing.  I know that this punishment will last a lifetime and I just don't know if I am up for it.  It has been such a long road so far and it has only been 8 months.  How many more years might I have to endure this agony?  Hopefully my life span isn't what I once hoped it would be.  Hopefully god takes some mercy on my soul.  I am still here.  Is there a purpose?  Is it so that Baby M can live?  I surely hope that it is because Baby M is going to live a long life - and long outlive Ted and I.  Otherwise, I can't leave this whole thing in god's hands forever.  He doesn't seem to have our best interests in mind.  I hope that I can surface for air again in the coming weeks - I want to try to be strong for other bereaved parents but I am having so much trouble being strong for myself.  I am back where I started - one day, one hour, one minute at a time.  Grief is hell.

Frequently Asked Questions

How much money have you raised for Maxie's Forest?
In total - including the original support page, Auntie Beth's "running to remember" page, the 5 k fundraiser's pages, the entrance for the event, the silent auction and the raffle, we have raised $105, 879.27 for Maxie's forest!  Our goal was $100,000.  This is very exciting.  It means that over 20,000 trees will be planted in Maxie's memory.  That is about equivalent to the number of trees in Central Park.  There will be a pillar that stands tall in the Carmel Forest with his name on it that we can all go visit in Israel.

What happened to Auntie Beth being included in the Televised Marathon Coverage?
Auntie Beth never found the reporter who was doing the special interest stories.  It was early, it was dark and she never found her contact at the 11 mile mark where they were supposed to meet. Oh well.  There will be future opportunities.  Thank you to Ashley and Ann who worked to make it possible.  Maybe next year?

What now?
Good question.  We will continue to accept donations for Maxie's forest.  We can never plant enough trees.  They are good for the environment and help to neutralize our carbon footprint.  They are important for the Carmel reforestation efforts.  They are a sign of support for Maxie's family and make us feel loved.  They are beautiful.  We are working next on getting 501C3 status for a new foundation in Maxie's name.  Our hope is to be able to provide small grants to bereaved parents of young children.  The emotional cost of losing a child is debilitating.  The financial cost is enormous as well.  We hope that our grantees will be able to use the funds however they see fit - to pay for medical bills, funeral costs, headstones, therapy, or even groceries, food delivery or going to the movies.  Nothing REALLY helps when you have lost a child but to be able to alleviate even a small portion of the burden is what we hope we can do.  Our plan is to raise funds through participation in competitive events (like the marathons, triathlons and 5ks), a large event each year, perhaps several smaller events, and through grants.

Why are you worried about Baby M?
Maxie was perfectly healthy as far as the naked eye (or the pediatrician's eye) could see.  He did not die of suffocation (or they would have found suffocation as the cause of his death).  He died of Sudden Unexplained Infant Death Syndrome, which basically means "the doctors don't know".  If there is a chance that Maxie died because of something that he inherited, we would want to know that so that we could do our best to keep Baby M alive.

Why are you doing genetic testing?
The autopsy report showed that Maxie had a fatty liver.  This is something rarely seen in an infant.  It is usually found in morbidly obese adults.  If you knew Maxie, you would know that he wasn't even a particularly chubby baby.  All of the "experts" who hear that Maxie had a fatty liver immediately respond that it is the sign of a Fatty Acid Oxidation Disorder (a metabolic disorder).  If Maxie had a metabolic disorder, it was one that was SO rare, it wasn't found on his newborn screening exam.  Almost all (if not all) fatty acid oxidation disorders are inherited.  Hopefully, through the genetic tests, we can find the specific mutation that Ted, Maxie and I all have so we can test Baby M for the same mutation.  It is a longshot though and there is only a small chance that we will be able to find any answers.

What kind of tests are you doing? How much do they cost?  Will insurance pay?
We are doing a very new and sophisticated test called the exome sequencing project.  It costs $6500. We won't know if insurance covers it or not until we submit our bill to the insurance company.  Hopefully, they will cover even a portion of the costs.  If not, this is what credit cards are for.

Will the genetic tests give you any answers?

The geneticists have no idea if we will get any answers.  The test they are hoping to run for us is the most sophisticated that they can offer at this moment in time.  They have yet to perfect the analysis and they still don't have a complete understanding of all possible mutations.  They also don't have a complete understand of all metabolic disorders or fatty acid oxidation disorders.  The ones that they know the most about, and that are most common, are screened for at birth in a regular newborn screening panel.  Again, Maxie's condition (if he even had one) was not found with that screening.  It is also possible that Maxie didn't have a metabolic disorder and we might not find anything with the test at all.  LASTLY - we don't know if they can even use the sample of blood that the coroner has sent them.  It might not be enough blood and it might be too old (it didn't help at all that the coroner report didn't get to us for 6 months). 


Why can't you just test the baby when he is born?
We can't just test the baby when he is born because we don't know what we'd be looking for.  There are 20,000 genes with hundreds of thousands of possible mutations.  If we don't know what we are looking for, we can't test for it.

Why can't they just test you and Ted?
Same reason as above.  They might find many mutations that Ted and I have both have but if they don't know whether Maxie had it, they won't know what killed him.

So few babies die in infancy each year.  The chances of this happening again are statistically low.  Why are you worried?
If Maxie died because of a metabolic disorder that was inherited through our genes, the chances of this happening again are not statistically low for OUR children, even if they are for the general population.  For OUR children, the chances would be one in four.

Why did you guys get pregnant again if this was a possibility?
We honestly didn't know that this was a possibility.  We kept hearing from "experts" that SIDS almost never strikes the same family twice.  Metabolic disorders only account for 3% of SIDS cases - and by the way, as soon as they pinpoint the cause of death as a metabolic disorder, the case is no longer labeled as SIDS or SUIDS.  It wasn't even something we had considered.  I was already more than two months pregnant when the coroner's report came back to us.  Also, we probably would not have even pursued learning more about what was written in the report (because the report provides little to no guidance or next steps advice) except for that my mother-in-law passed the report onto a doctor who was a leading SIDS expert before retirement.  The vast majority of couples that lose children to SIDS go on to have very healthy children.


Can't you talk to an expert?
We are talking to experts.  It seems that if Maxie had something, it was something so rare, there are no experts. We are working with a geneticist that left a pediatric practice to go work as a pediatric metabolic specialist.  We will want Baby M to see him as soon as he is born.

If it is found that Baby M has a fatty acid metabolic disorder, what is the treatment?
Generally, a baby that is found to have a fatty acid metabolic disorder must be fed every 2-4 hours.  There are other treatments too, depending on the exact type of disorder.  Again, if Max had something, it is something so rare that "they" probably don't know what the treatment is.  It is possible that even if we find out what Maxie had, we still won't know what the treatment for that disorder is.  That is one of the worst case scenarios that causes so much fear and sorrow.  What we do know is that Max had eaten twice the morning that he stopped breathing.  He also managed to survive nightly fasts of 11 hours starting at 4 months old and he was thriving and meeting all of his developmental milestones.  He wasn't sick and he wasn't fussy. He didn't really fit the profile for a baby suffering from a metabolic disorder.

Is it possible that something else is responsible for Maxie's death?
Yes!  His fatty liver might have nothing to do with his death.  The thing about SIDS is that they don't know what it is.  The country's leading expert on SIDS believes that it is an abnormality in the brain stem.  Her belief is that this abnormality combined with an environmental trigger is what would begin an "episode" that would lead to the sudden death of an infant.  With this kind of death, it is very rare to see recurrence but still, they haven't clarified (because they don't know!) if genetics plays a part.

Unfortunately, we may never have answers.  What scares me is that well-baby doctors visits and having a happy and healthy baby won't be any indication that this won't happen again.  Either the baby will live or he won't.  He could die at 4 months, 10 months, 17 months, or not at all.  We are just not in the same pool as most every other happy and expecting couple....who should not have to worry about the very worst happening.  I know that when you tell us how excited you are for Baby M to come, you are sincere and want to see some happiness come back into our lives.  I just want to TRY and be clear about why this is SO very scary for us.  Words fail me.  I try so hard to articulate that this pregnancy is not all butterflies and daffodils but either I am doing a terrible job explaining that or people are just choosing not to hear me.  Even re-reading this FAQ page, I realize that I come off as unemotional.  I just don't know what to do anymore.  I am beside myself with worry and grief.  Losing another child is not an option for me if I want to keep living.

If you have more questions, email them to teddyabby at gmail dot com (the funny secret is that I actually have no idea why I can't just write my email address here but I can see that other bloggers write their email addresses cryptically, so I am just being a follower, not a leader) and I will put together another FAQ page for the future.  You can ask about anything....doesn't have to just be about the genetic tests.  We should know in the next few days if we can do the tests.  We will keep you in the loop.

Hate is such a strong word

I hate that my pregnancy with Baby M isn't anything like my pregnancy with Max.  I loved being pregnant with Max.  To be clear, I didn't love swollen ankles or back pain or acid reflux...but, I loved knowing that my little boy was on his way and that life would get so much more exciting and lovely when he showed up.  I hate that with Baby M, I am in deep grief and that I have no idea what to expect from his arrival.  I hate that I am scared to fall in love with him because I KNOW that I don't get to be a pollyanna about his bright future.  I hate that I have no idea whether Baby M will have a bright future and that there is as much as a 25% chance that he could end up with exactly whatever killed Maxie.  I hate that I don't get to believe what everyone else seems to believe, which is that Baby M will fix everything.  I hate that I know better.  I hate that the coroner waited 6 months to get us the report back after Max died and that now the geneticists think that the blood sample might be too old to even test.  I hate that they cannot just test Ted and I and that they actually need Maxie's sample to have any hope of making any determinations.  And, I hate that they cannot "just test the baby" since they have no idea what they are testing for unless they can pinpoint the cause of death in Maxie.  I hate not having Max here to hug and kiss my tummy.  I hate not having Max here to hug and kiss me (and I hate that I never felt a hug or a kiss from Max....I don't even know what that would feel like).  I hate that I don't get to kiss Maxie - on the cheeks, behind his ears, on his tummy, on the back of his neck.  I really effing hate it!  I hate that this is the reality that I wake up to every freaking morning.  I hate this hell that I am stuck in and that the future doesn't actually look bright to me.  I wish it did.  I hate ALL of this.  People always say "Hate is such a strong word"...like you shouldn't say it.  The truth is though - I HATE it all and for once, I am glad that I can use the word HATE and mean it - because it is such a strong word.

All I've got

It was a long weekend.  Even Jake is pooped.

When I was pregnant with Maxie, I used to always tell Jakey that he didn't need to worry, he would always be my first son.  I remember wondering what the love would be like that I would have for my human baby. I knew that if I loved Jake as much as I did, I would REALLY love our actual offspring even more.  I couldn't fathom that much love.  But, of course, Max showed up and Jakey was soon yesterday's news.  My love for Max was my whole heart - the whole thing.  After Max passed, I resented the dogs a little.  Maybe even a lot.  It makes no sense, but suddenly, I wasn't a mother anymore to Max, just mother to two dogs.  And, I wondered constantly why they were still here and Max was gone.  I was annoyed that Layla hurt her paw around the time when Max died.  Taking care of my dog's problems when I felt so helpless to take care of my own....and I had failed in taking care of my son's...just felt stupid almost.  Through the years, Ted watched me pour so much love into Jake, he worried what would happen to me when Jake would eventually die.  I told him I understood that Jake wouldn't be with us forever, but deep inside, I knew that when the day would finally come, it would kill a little bit of my soul.  Now, I can't believe that my dogs have outlived my child.  My WHOLE soul has been killed.  I am the walking dead.  While Ted has found so much comfort in our dogs since losing Max, I have felt resentful that I am no longer the mom to a beautiful baby boy and now only the mom to my two dogs.  And, yes, I get that for many people dogs are their children.  Believe me, my dogs were too.  But, the love I feel for them doesn't compare in the least to what I feel for Max.  Lately, the dogs have made their way back into my heart.  They are all I've got and I suppose at this point, I have to take what I can get.  Cuddling with Jake, my first son, is the very best life has to offer me at this stage (other than cuddling with my husband of course).  I know that Jake and Layla love me...not as much as Max loved me...that, I know for sure.  I love these two dogs as well.  Not as much as I love my son, but still - SO much love.  I suppose I should feel lucky to have them....so, I am clinging to that for now.  Hoping that their love can carry me until Baby M gets here in 130 days....

My separation anxiety

I hated being apart from Max.  I remember the first time I left him.  I had to return a breast pump to the hospital where Max was treated for jaundice and go to the DMV to get my license renewed.  I left Max at my mom's house for about 3 hours.  He was a month old.  I couldn't get back quickly enough and I felt totally uncomfortable being out and about without him....like a part of me was missing.  There was a tug on my heart pulling me back to where he was.  Honestly, that feeling never went away.  I never felt whole unless he was with me.  I left him to go do things.  Obviously, I put him in daycare.  I went away for 3 days to a wedding (that nearly killed me).  But, it felt unnatural for me to be without him.  I didn't feel like myself.  I missed him all day long.  I felt anxious and worried.  I guess I hid it well.  When I would finally be with him again, my heart rate would slow down again and I could breathe.  I think I've mentioned, I missed him after he went to sleep at night.

Tomorrow will be the eight month mark.  Eight months since my monkey stopped breathing at daycare.  Eight months since this nightmare began.  My separation anxiety hasn't gone away.  Being without him is complete horror and pain all of the time.  I don't feel whole without him.  Time has made some things easier...it's true.  The thing is, and this is hard to explain, in the beginning I felt like there was hope that things could get better.  Somehow, I thought someone could bring him back to me.  And, I know it isn't rational, but it was how I felt.  I thought that perhaps there was a 12 step treatment for grief or that somehow someone would give me "the advice" to make this liveable.  Now I know he is gone.  I know that "this" doesn't get less painful.  I know that life will never be as good and I will never be as innocent.  Accepting that things won't get better almost makes something easier.  But, it doesn't help with the pain of him not being here.  I can never relax, because he is not by my side.

Yesterday, I sat and watched my niece, Sadie, play with Jake and Layla (our dogs).  I wondered what it would be like for Max now.  If the dogs would be as patient with him.  Would he enjoy them as much as she does?  I am sure he would.  I watched her sit at our kitchen counter with headphones on and watch a movie.  Would Max have eventually sat like that?  Probably.  Nobody really mentions Max, but everyone talks about Baby M.  Do they somehow love this baby who hasn't even been born yet more than the one who lit up our lives?  Or, is it just too painful to remember our little boy?  Being around family is so important but at the same time, it is with family that I feel Max's absence the most.  He should be the center of attention right now.  He would be 17 months old.  He would be so cute and interactive and sweet.  Instead family talks about everything but Max.  We dance around his name.  His beautiful name.  The name that I can't get out of my mind - that I never want to have out of my mind.  Maxwell Judah Leviss.  My baby.  The person I waited for my whole life.  Gone already.  Our lives shattered.  Our future cut short.  I spent so much time worried about hurting people's feeling because I left their party, or wedding shower, or wedding, or bookclub meeting, or dinner party early - so I could be with Max.  So, I could feel whole, instead of alone without him.  Now, I've been left alone forever- totally unwhole for an eternity.  It's gotten easier just because I now know nobody can help.  That chapter is closed.  Easier makes no sense - because it is just as hard as ever.

Team Maxie - Running to Remember

I dreaded this weekend and, as expected, it HAS been very emotionally challenging.  At the same time, getting out of my house and being around my friends has been really great.  I feel so supported and loved.  This morning's 5k was WET!  Our group mostly walked but there were a few runners.  Runners: Stefanie Elkins, Stacy Katz, Jessica Clements and Stefanie Hobbs.  Walkers: Gigi, Aunt Jan and her husband, Ian, Grandma Susanna, Ken (K-pa), Uncle Paul, Prima Sharon, Robyn Heller, Ann Frederick, Carmen Abramian, Amy Mirich, Tamar Tamler, Erika Montes, and Kate Spitser (did I forget someone?).  Papa L and Sadie were there to cheer us on!  I think we met up with everyone but perhaps there were a few people who we missed.  Thank you to everyone who came this morning.  It was early, cold and rainy but everyone showed up with awesome attitudes.  For example, check out Prima Sharon.

Beth got t-shirts for everyone - and she and Ted made lots of pins yesterday with cute photos of Maxie for everyone to wear as well.  With the exception of the runners, Team Maxie was pulling up the rear of the race.  By the time it ended, it was POURING and my socks and pants were soaked all of the way through.

By the way, Auntie Beth is running the LA Marathon for Team Maxie tomorrow and Maxie's story will be part of the coverage on KTLA (Channel 5).  If you have a DVR, record the LA marathon coverage to see Auntie Beth run and talk about our beautiful Maxie.

Thank you to everyone who came out this morning to run and walk beside us. It felt really nice to be surrounded by you all!