Late night alone

Late at night I sit in the dark living room Calling out your name And crying until I am shaking with grief Where have you gone Why did you leave me My heart is so broken I long for you sweet boy Life is empty without you

Compartmentalizing my grief

I have gotten better at compartmentalizing my grief (or "pretending").  I can put Maxie away for hours at a time without completely losing it emotionally in public.  It isn't easy.  Sometimes the tears creep in and I work hard to shut them down.  It is easier for everyone this way.

But, can I tell you something?  I sort of hate it.  I know it is "progress".  I hate that the expectation of progress is for me to stop focusing on Max - my baby.  If he was alive, he would be my primary focus....obviously.  I know that everyone else has been compartmentalizing from the very beginning.  They couldn't let themselves feel this pain.  They probably wonder why it took me so long or whether I was purposely avoiding this stage.  I don't think I realized that it was possible to even be in this stage AND I probably was also avoiding it.  Pushing down the pain and putting on a smile feels like a terrible betrayal of my favorite person.  I imagine that when people leave my company now they say, "She seems to be doing so much better."  I am not really.  My hearts aches this morning, like every morning.  It is false.  It's an act.  I am still obsessed with where our souls go.  I am still ticking off the days until I can be with Max again.  I still can't believe that I am living in this nightmare.

"But he would have wanted you to be happy...", they say.  Would he have?  He was nine and a half months old.  I can only imagine that he wanted to be my baby.  He wanted us to be happy together.   If he was alive, he might feel jealous of Baby M or wonder why I wasn't paying as much attention to him anymore and I would feel guilty.  Look, if I died tomorrow, I would want my family to be happy again, but do we become totally unselfish upon passing?  I think it would hurt me to see them merrily going about life so soon after my death.  I think it would hurt me to not hear them mention my name or remember out loud the things that they loved about me.  I never admit that, because I am not supposed to.  So, there, I admitted it. If that's how I feel, why is it assumed that he was capable of emotions that are so much more complex? 

So, I am pleased to say that you might see a smiling woman when you next see me.  That will make life easier for you, for sure.  And it will be easy for you to walk away and feel good that "this" is over.  But, I think if you looked a little closer, you might see what you must know is true: that Maxie is in my every thought.  That "this" will never be over.  That "this" doesn't get any easier.  And, that I am just trying to figure out where to put my Max, for now, until we can be together again.  Not soon enough baby.

Up all night

I got an email recently that cut straight into my heart.  It was well-intended.  In fact, the email was pretty benign.  Let's say it was a professional exchange.  The email started by saying something like, "Sorry I didn't get back to you last night.  My spouse and I are trying to get sleep these days whenever we can"...that was followed by a smiley or winkie face or something similar.  We had exchanged several emails at this point.  Max and our loss was not brought up in any of the emails and frankly, I had no idea that this person had a baby.  It felt like someone had thrown acid in my face.  The writer meant nothing by it.  Maybe it was just his way of letting me know that he had had a baby.  The line, however, was pretty reminiscent of the kinds of emails I exchanged with other new parents in the months following Max's birth.  You know...the ones where we sympathize with each other about the "burdens" of being a new parent but we are secretly thrilled that we are part of this exciting and wonderful club?  I still like to pretend like I am part of that club from time to time and talk about my experience with Max in the context of a conversation with someone close - like I did with my step sister over the weekend - talking about Camille and remembering the early months with Max and how he slept (or didn't) and nursed and his general temperament.

Thing is, I am not part of this club anymore.  In fact, my membership was not only revoked, they actually cut up my card in front of my face and then put the remains of it through the shredder.  The person I was emailing with didn't really connect the dots on that one.  They are now in my former club but hadn't really given much thought about how it would make me feel when they flaunted their membership in my face.  It's possible that to the non-griever, I overreacted to a simple misunderstanding.  But it hurt - kind of like when someone didn't show up at Maxie's Benefit and said, "Sorry we didn't make it.  You know how hectic it can get at home with kids".  Yep, we know.  Would it not have been just as easy to say, "Sorry we didn't make it last night?"  Perhaps these people are trying to bond around the simple fact that I had once been in the club.  Like how I might connect (somewhat superficially) with someone who had gone to the same high school, or college or graduate school as me.  Of course, wouldn't that connection be a little "sour grapes" had I been thrown out of said institution in a grand and humiliating way?  Not to say I am not happy for the membership other people have in the club...its just that memories of the club hurt me and I am in a different club now...one in which we aren't afforded the luxury of that superficial kind of connecting.  I am in a club with no upside or silver lining.  I am in a club that I wish I could quit but to which I was given lifetime membership against my will.  I hate my club (even if I love some of its members).  And, even though I am about to get membership back into my original club, it will never quite feel the same as it did the first time around.

A blog reader made a really funny comment on yesterday's post about going "batsh*t" on a couple of women in a Starbucks who were complaining about being up all night with their babies.  The comment made me laugh (and somehow feel very supported).  It is true that I no longer have much tolerance for the complaints of parenthood.  None of it really seems like that big of a burden.  None of it actually was a burden.  More like a total privilege.  The most mundane of caretaking responsibilities were the things that I most enjoyed: baths, bedtime, bottles and meals, even diaper changing.  And when I get those horrible flashbacks, I usually force my brain to remember the sweet quiet times - like when Maxie and I were up in the middle of the night, whole house quiet, I nursing him, staring into each others eyes.  Up all night doesn't bring back memories of anything but love.  I'd give my whole life to have one more "up all night" with Max.  So, like I said to my email friend (which I should have just thought to myself) - "Be grateful for up all night."  Honestly, membership comes with privileges, right?

New Friend

I have made some new friends over this past year: through this blog, through reading other people's blogs, through my search for Maxie, and through friends who connected me to friends who have also been through this journey of grief.  I wish I'd never had any reason to meet any of them.  But, I have had good reason and I have been uplifted by their support.

This week, I met in person the very first stranger to reach out to me after Max passed.  She read about Maxie after Bianca posted that I was donating my saved breastmilk on a popular yahoo user site.  She is the one that put me in touch with my neighbor who also lost a baby to SIDS.  She sent many, many emails through my early months of grief.  She read my blog daily and sent along deep thoughts about life and loss and life after death and life's meaning.  She never backed away or sent me platitudes.  I suppose she didn't need to feel like she needed to make me happy again.  Afterall, she didn't even know me.  She even sent me a children's book about reincarnation (which could have just as easily been written for an adult), that I can't wait to read to Baby M.  Through all of our various emails, we discovered we'd even worked for the same organization (The Shoah Foundation - Spielberg's foundation dedicated to collecting and archiving the testimonies of Holocaust survivors) - just not at the same time.  But we were able to talk about who we both knew from those days and how the job profoundly affected our lives.  Turns out that wasn't the only non-profit that she had worked for in the Jewish community either.  So, we had that in common as well.  She offered many times to come over with coffees or just come hang out and keep me company.  But, I worried too much about the kind of impression I would make - on anyone - in the very earliest days.  I couldn't see a soul.  All I could do was cry.  She was very clear to tell me that she hoped I didn't think she was being "stalker-ish".  I didn't think she was being stalkerish, though it got me wondering why some people who you've known all your life simply disappear when something so terrible happens, and other people, who you don't know at all, show up.  There were definitely those people who gravitated towards me in the very early days.  Those people are a strange breed of tragedy monger.  They want to be able to say "My good friend lost her baby"...even though we aren't good friends.  I could and can sense them from a mile away.  I have never feel that with her.

I hadn't heard from her in a while and was actually thinking about her a week or two ago and then the next morning, I got an email from her - telling me she was still reading and thinking about us.  I told her I had just been thinking about her.  We decided it was time to meet.  So we set up a date for lunch.  First of all, I should say, I've been getting out of the house with greater frequency.  It helps my weeks go by quicker.  I was happy to have an excuse to get out on Monday because the weekend was so hard.  Meeting Kim was like meeting up with someone I actually knew.  We had an immediate rapport (or, at least, I like to think we did).  She asked all sorts of questions, which led me to feel like I was possibly talking too much but, again, I don't get out much.  I tend to talk too much when I do.  I found out she is from Greenwich, CT, near Fairfield, where Ted is from.  Both towns are in Fairfield County actually and she is a Giants fan!  I asked her what made her continue to reach out to me, a complete stranger.  I told her that it has been stunning in light of the fact that so many I know can't go there with me.  She said that she read about what happened and it affected her, so she wrote me, and then I wrote back...so she kept writing.  She said that she wasn't the type of person to not follow through on an emotion, even if it is a hard one.  She didn't just cut her expression short because the sorrow was too deep.  She said it much more eloquently than that though.  I have seen this rare quality in a few people since Max died.  It is really special.  So much empathy must be hard to handle though.  I admire the strength it takes to really go deep with another person.

Meeting Kim for lunch was sort of liberating, if that is the right word to use.  She has no expectations of me at all.  How could she? She didn't even know me before I lost Max.  It gives me hope that there will be people in the future that just accept me for this new person that I am, because I am different, there is no two ways about it.  I didn't feel tremendous pressure about our meeting either - if she likes this person, she likes me; if not, not.  I know that I like her.  I would have liked her "before" too.  She is likeable.

Sunday's Ceremony

It was as heartbreaking and painful as I thought it would be.  I am grateful that Rabbi Marx came to guide us through.  I always call Rabbi Marx "my rabbi/our rabbi", even though I don't belong to his congregation.  I don't belong to a synagogue at all as a matter of fact.  If I did, I would belong to his.  But, it is really too far away for us.  Rabbi Marx was a teacher of mine in graduate school who I just really liked.  He is just someone who I have always found funny and wise and respected so it feels natural to call upon him for lifecycle stuff.  We used to meet for lunch occasionally too just to catch up before Max passed.  Rabbi Marx signed our US marriage certificate before we left for our Costa Rica wedding.  It was like a secret marriage in his office.  The I think the witnesses were the synagogue receptionist and the Director of the Religious School.  Rabbi Marx was with us when Max passed and led his funeral service.  Ted asked him to be there Sunday and he generously volunteered his time to be with us once again.  He gave structure and meaning to the day.

Ted organized everything for Sunday - he designed and ordered the headstone, called the cemetery to arrange our ceremony time, organized family to come, and picked up the food.  I am grateful for that as well.  Everytime we get through one of these dates, I love him more.  As I told him, I hate walking this road but I am lucky to be doing it with him.

When we first got there, all I could think is "This is too soon".  This should happen after five years - the amount of time I am told it takes at a minimum to integrate a loss like this.  I told Rabbi Marx and he said he understood. During the ceremony, however, he said that one of the reasons we do this at a year is because it still feels so fresh, it feels like it just happened, we may feel no different than we did in our early grief, and yet ...almost a whole year has gone by.  A whole year has gone by and we are still here.  It really is amazing.  In many ways it feels like I lost Maxie yesterday but somehow I have lived a whole year.  It has been a year of seclusion and terror and unrelenting sorrow...but I am still here.  We read Ecclesiastes - A time for every purpose under heaven....a time to be born and a time to die.  Holy Lord - how can it be that Maxie's times were so close?  That whole psalm has been turned on its head for me as I do not believe it was Maxie's time.  I do not approve, even if I must accept.  He told us that we can rest peacefully knowing that all souls go somewhere together after we die and that we will be together.  After the ceremony, I asked him if he really believed that...because Rabbi Marx is no conventional rabbi.  He is a blatant defender of the old/new philosophies of reform Judaism in which Judaism actually reformed and became more secular.  I don't even think I have ever seen him wear a kippah.  I am pretty sure that the synagogue's kitchen isn't even kosher (and I love his explanation why).  I was actually afraid to ask him about his thoughts on life and death because I was sure he would tell me that the soul lives on by our carrying them in our hearts.  He may still tell me that when I call him later this week to ask him some BIG questions about life, but for now, I choose to believe that he chooses to believe that we go somewhere and get to be with each other again.  A hundred people have told me that they believe our souls continue but somehow when it comes from certain people, it has more impact for me.

What really made the day bearable and even brought a little light back into my heart was this baby girl - my three and a half month old niece Camille.  Who would have thought it?  I am afraid of babies....or am I?

She is so super sweet and cute.  She is a mellow baby like Maxie.  I kissed her and hugged her and made her smile and she smells good and reminded me what it is like to love a baby.  She got me thinking about the fact that I will have my own baby in just a few short weeks to love.  They will be such good friends (I hope).  Maxie would have loved her.  Probably almost as much as the other one who brought joy to my day (Mandy) loved him.

My nieces: Mandy, Sadie and now Camille, are pretty much the only children I have been around in a year and I just love them.  Sometimes my heart breaks that Maxie won't ever get to play with these three beautiful girls who are all so full of spirit but, I know I still have the capacity to love them...and that is so important....especially with Baby M on the way.  It's a weird broken love though because my love for them (and everyone) seems to always highlight for me what's missing.  He will always be missing.  And by the way, this past weekend, Sadie (4) and Mandy (6) both had their birthday parties on Saturday, the day before we memorialized Maxie.  It is somehow stunning to me that they will keep getting older and he will always be nine and a half months old.  This is life now.

The unveiling didn't really bring me closure but I hated the little temporary marker on Maxie's grave.  It felt so cold and procedure-like.  His permanent stone feels more personal and it was designed by his daddy with so much love.  I feel like Maxie deserved the day.  But, it is beyond painful because my baby boy deserves everything in the whole world and instead he gets a headstone.  And, I wanted to lie down on his grave to be close to him, like I did in the early days of grief...but I am too pregnant to lie down on the grass.  I can't get close enough anyway.  Sometimes I wish I could claw my way into the ground and get in there with him.  I don't mean to sound morbid, I just long for his physical body and nothing else will do.

Now that it is over, my thoughts turn to what comes next.  We have Maxie's Yahrzeit (the anniversary of his death) and the birth of Baby M.  I am praying that they will not fall together, but I know I have no control (of anything at all).  And after this year is over, then what?  Will my pain be any less?  Will my happiness return?  Will everything go back to the way it was?  No.  Sadly, the answer is no.  Everything will be different and I know that in all of the love I am giving Baby M, someone will be missing.  I will be missing him forever.  My monkey, my Maxie - he's forever holding a piece of my heart.  I will just keep killing time, loving everyone else in as unbroken of a way that I can, until I can be with him again and put the pieces back together.  I yearn to be with Max again.  I long to make sense of this pain.

Unveiling

The Other Maxwell

I may have already revealed the secret that Maxie was named, in part, for Maxwell - 

For those of you not in the know, Maxwell is an R&B artist that Ted and I both love and whose music we fell in love to.  We danced the first dance at our wedding to Maxwell's "Lifetime".

This morning, as we were lying in bed, listening to music, and anticipating the heaviness of the day, a favorite Maxwell song came on.  The song was actually written by Kate Bush and although the original version is beautiful, I am partial to the Maxwell version. It's a song about loss - or potential loss - of a child and a wife/mother/partner. 

This Woman's Work

Lyrics by Kate Bush

Pray God you can cope. 
I stand outside 

This woman's work, 
This woman's world. 
Ooh, it's hard on the man, 
Now his part is over. 
Now starts the craft of the father. 

I know you have a little life in you yet. 
I know you have a lot of strength left. 
I know you have a little life in you yet. 
I know you have a lot of strength left. 

I should be crying, but I just can't let it show. 
I should be hoping, but I can't stop thinking 

Of all the things I should've said, 
That I never said. 
All the things we should've done, 
That we never did. 
All the things I should've given, 
But I didn't. 

Oh, darling, make it go, 
Make it go away. 

Give me these moments back. 
Give them back to me. 
Give me that little kiss. 
Give me your hand. 

(I know you have a little life in you yet. 
I know you have a lot of strength left. 
I know you have a little life in you yet. 
I know you have a lot of strength left.) 

I should be crying, but I just can't let it show. 
I should be hoping, but I can't stop thinking 

Of all the things we should've said, 
That were never said. 
All the things we should've done, 
That we never did. 
All the things that you needed from me. 
All the things that you wanted for me. 
All the things that I should've given, 
But I didn't. 

Oh, darling, make it go away. 
Just make it go away now.

Tomorrow's sorrow

Ugh - tomorrow.  Unveiling.  I understand why it is considered an important Jewish mourning ritual.....when it is for someone other than your child.  When my grandpa died, I do remember feeling some closure after his unveiling.  The day itself was hard though.  I cried my eyes out.  This neighbor of my grandparents pulled me aside and told me to calm myself down...that the day was supposed to be all about my grandmother and she didn't need to see my crying on her day.  I still think that stupid neighbor was wrong.  Should my grandmother have been crying all by herself?  Would it have been a comfort for her to know that she was the only one who was sad like that?  I tend to think she was probably reminded that she picked such a loving husband that her children and grandchildren were absolutely wild about and that we missed him with everything that we were.  Perhaps I am wrong.  I don't think so.

So, tomorrow, I will have my already open wound, opened further.  It seems like every couple of weeks, there is something that tears me apart anew with fresh intensity.  I am not ready for it.  I hate to think of Max up there on that hill.  I would rather think he is here, with me.  When I think of him up there, I know I dressed him all wrong.  He is wearing flannel PJs...Blue.  Giants.  Flannel PJs.  I worry about how hot he must get in the summer time...how wet he must get in the fall and winter rains...the flannel soaking up all of the water.  It reinforces my feelings of being an absolutely terrible mother.  Just terrible.

In the meantime, something really supportive from today - Ted's high school friend, Ryan Murphy, ran a 5k in Fairfield (where Ted grew up) in memory of two sweet boys: Ryan's nephew Gavin and our Maxie.  He sent out their support sites to raise some money too for these two important causes.  Ryan sends me some of the most heartfelt, lovely emails.  His whole family is very special to us.  Thank you Ryan for supporting our boy.  We love you very much!

Missing Maxie

You mean well
But it's too hard for you to be around me....
Or call me, or email me, or send me a quick text
Or read my blog
And if you have to be around me,
you cannot mention his name
Or ask how I am doing
It's too hard for you because
what happened to me
Is your worst nightmare
And guess what?
It is my worst nightmare too
So when you are done
gathering all of the strength you have
to put three words into a text message
"Thinking about you"
I have to keep gathering strength to keep breathing
Because lord knows,
there are times I'd much rather stop
And then you can go back to work, playing with your children or reading your book
And I will smile for a minute or two
and then go back to Missing Maxie

Eleven months

It has been eleven months since the last time I kissed his cheeks, smelled his baby sweetness, held his pudgy hand.  It has been eleven LONG months of pain and sorrow.  Not much has changed really, on the one hand...and so much has changed, on the other.  The pain is still excruciating but somewhat less shocking....or I should say "less shocking unless I give myself time to actually think about it.  If I think about it, it can feel more shocking.  I am getting used to the fact that my life is painful and that I needn't expect it to be any other way.  Happiness is reserved for "other people".

People ("other people") are still incredibly insensitive - it doesn't eat me alive anymore.  After the temporary hurt and anger wear off, I find myself accepting that people, in general, just aren't super kind.  Maybe I always knew that and didn't want to see it.  Still, when someone shows me just how insensitive they are, I have learned not to go back to the same person expecting anything more.  I just let them go.  I don't miss them anymore.  Some people have risen to the occasion like nothing I could have even imagined.  They have soothed our souls and made us feel human (as opposed to how the behavior of others is just downright dehumanizing).  Some people have gone out of their way to support and love us.  These are people that I feel lucky to know.  That I will be grateful to for the rest of my life.  I don't know how I will ever repay them.

Baby M is coming - his conception was something that I felt biologically compelled to pursue after losing Max.  My pregnancy with him has been hard and scary.  He is due in five weeks.  I don't even let myself see our future together.  I am just grateful each day that he is still there.  To lose him now would be heartbreaking but nothing is scarier than the thought of losing him after he gets here.  The battle to keep this thought out of my brain is waged every minute.  EVERY MINUTE.  But, I KNOW I will love him.  Already do.  He brings me moments of joy just by kicking out my insides.

We still get lists of body parts that are being held by the coroner in cold, unfeeling emails.  This is just SHOCKING and we both react with the same visceral gut wrenching sickness each time.  As insensitive as people are - doctors have figured out a way to take it to a whole new level.  At least with non-doctors, I can chalk it up to stupidity or lack of experience.  I know that doctors are neither stupid nor lacking in experience.  They are just uncaring (ironic - isn't it?  Considering their chosen profession).  I am making a sweeping generalization based on my experience by the way - my OB should be sainted.  Even he says stupid things from time to time but never ever from an uncaring place.

The strangest change of all to me is how Ted and I have gotten used to this new life - one where we don't really socialize, where I cry most nights and he falls asleep on the couch watching "The Highlight Express" on ESPN, where we watch too much crappy television, where our quest for happiness has been shelved for just basic existence and getting through each day, and mostly - where we are not parents anymore but more like a childless couple who have been married for 25 years (not just under 3).  Our home used to be filled with so much joy.  SO MUCH JOY.  When I remember it, it's like I am remembering a book I once read.  It is so far removed from our reality.  And yet, I have never loved my husband more than I do now.  And I have LOVED him.  He is perfect in every way.  He is the light in my tunnel.

This weekend we will be having Max's "unveiling" - a Jewish tradition where you gather around the newly laid down gravestone and memorialize the deceased, usually a month before the year anniversary of their passing.  My grief counselor says it is a nice tradition that Jews have that helps us to actualize our grief (she is not Jewish by the way).  It is a good segue into the "acceptance" phase.  I told her "I DO NOT ACCEPT ANY OF THIS".  She says acceptance is different than approval.  Acceptance means acknowledging that our loved one is really gone.  It isn't as if he was a grown child who I didn't necessarily see every day.  It isn't as if he is a parent.  It isn't as if he were my grandparent.  I am not belittling those losses but rather pointing out that my baby was still practically attached to my body when he died.  It is hard to miss that he is gone considering my entire life revolved around his every squeak.  At some level though, I guess I do keep expecting his to come back.  How shitty that I have to accept my baby's death.  How completely effing shitty.

Next month marks a whole year since my tiny pumpkin monkey love left my life.  Then a whole year of "firsts" will be over.  Is that when it gets easier or harder?  I've heard conflicting opinions.  Could it get harder than this?  I keep learning it can always get harder, despite cheerful platitudes flying at me constantly assuring that "Things can only get better!"  But, honestly....Baby M is coming!  Maybe things can only get better?  Am I allowed to still have moments of hopefulness or is part of my punishment a condemnation to a life filled with hopelessness?  All I know is I miss my baby.  My sweet, sweet boy - who was full of love, full of life, full of smiles and giggles.  I am still looking for you in my dreams every night baby.  Please come visit mommy soon.  I need you.

Anxious

Is there such thing as a low grade panic attack?  If so, I have been having one all morning.  I have so much anxiety about Baby M and also Max.  I am still in complete disbelief at times that Max is gone.  The horror is ripping my insides out.  And, I am SO SCARED about Baby M.  I also noticed this morning two stories from blogging moms about rainbow babies.  In one post, the baby's monitor went off because the baby stopped breathing for 20 seconds.  In the second post, the mommy lost her rainbow baby (in addition, one woman posted about losing her rainbow baby on my SIDS online support site and I am the only one who responded to her.  NOT ONE other person wrote one word of support to her.  If I thought it was ostracizing to lost one child - even the SIDS mommies won't respond to the woman who has lost more than one.  I feel sick thinking about it).  I have heard too many stories in the last few months of parents losing their rainbow babies.  It hurts everything in my whole body.  I used to put so much trust in doctors and now I realize that as far as the medical field has come, in many ways, they have barely scratched the surface...particularly in the areas most important to me and my baby - genetics and SIDS research.  So, I have no choice but to step blindly into the unknown with this child who is a gift to my family.  This child who we are so anxious to love and spoil and kiss and hug.  The last year has been chock full of a combination of the most scary events that I could possibly imagine and I see no end in sight.

CPR

Last night, we had a little CPR class at our house.  It was Ted, my mom, my dad, my step-sister Lyndsey, my brother Paul and I.  We knew it was likely to bring up some bad memories and other feelings but I think we can probably all agree that we are glad we did it.

The teacher was really good and so nice.  It's funny to me how even the nicest, most well- meaning people really don't think before they speak.  Or maybe its just that they figure we have learned to turn off our feelings.  There were some weird things that triggered all of us.  I was the cold b*tch in the room who kept shutting him up.  I didn't mean to hurt him, I just wanted to save us from being hurt BY him.  We all agreed that he took it pretty well.  For instance, he was talking about drownings and he went on and on about how babies love water and then moved into how babies LOVE bath time and how they just can't get enough of their baths and it is such a special time for parents and on and on and on....It is obviously a speech he gives to drive home the point that children can get too comfortable in water.  We got it.  I stopped him and said, "We know that babies love baths.  Our baby loved his bath.  It was one of our most special times with him.  You don't need to tell us how babies love baths.  Let's move on."  I am an a-hole.  Actually, I got really teared up when I shut him up.  He said not to worry if we need to get emotional, if we need to cry we should just "let it rip".  That really annoyed Ted, who then said, "What do you MEAN 'let it rip?'".   It bugged him that anyone would give us permission to be sad in a house of eleven months of sadness.  We are a tough crowd over here.)  Another time, he was talking about ....who knows what...but he said, "We have a new grandchild.  Our FIRST grandchild..." and as he was talking he was pulling out his phone.  It was obvious that he wanted to show us photos of his new grandchild.  His face was lighting up.  I looked around the room and saw the sinking looks on everyone's faces.  I want to be polite and look at his photos but I am sure that the last thing we wanted to be doing is hearing anecdotal stories about his adorable grandchild.  I shut him down again.  Man, I suck.  At the end of the class, he started telling us about the "Back to Sleep Campaign" and how it works and that once babies start turning over, there is nothing you can do, but that we needn't worry because SIDS is so rare and.....  Guess who shut him up again?  Yup!  "You are talking to the wrong family", I said.  I mean......REALLY?   He also went on and on about how he used to work in a Pediatric ICU but hated talking to parents whose children died so he stopped doing that because he thought, "There has to be a better way to make a living".

It's almost comical.  Nobody thinks before they speak.  Sometimes I wonder if we make them SO nervous that they say exactly what they know they shouldn't say.  There is this story about my grandmother from when she was a child.  Her mother had a guest over for tea with a really big nose and told her that whatever she did, she should not mention the nose.  So, my grandmother asked him if he would like sugar or cream in his nose.  I've heard the story many times from other people too.  I've often wondered if it isn't just one of those stories people tell as their own.  Regardless, are people trying so hard not to say the wrong thing that they end up doing exactly that?  Is that why other people just don't mention anything at all?  It is starting to bug me less and just embarrass me for the other person more.  And, honestly, I don't feel THAT bad for shutting him up.  Am I really supposed to tip toe around the feelings of people who don't tip toe around mine?  It's bizarre.

Honestly, this guy rolled with our punches pretty well.  He was a really good teacher.  Ted and I, both former lifeguards, agreed that CPR has gotten so much "easier" to learn.  They've simplified it.  We actually watched a CPR video right after Max was born and I think we made the same comments then but who can remember?  It is good to keep refreshing ourselves.  I'm glad that our family was there too.  It made us feel supported and it was all important information for them to know too...especially Lyndsey who has an almost six year old (Mandy turns six on Saturday!) and a three month old (Camille, who Teddy and I will finally meet on Sunday.  She and Baby M are sure to be future playmates).  Layla and Jake got really into it too.  It was sort of heartbreaking how excited Layla got when the teacher started pulling the "resusie Annie baby" dolls out of his bags.  Layla has sure missed her baby these past eleven months.  We actually put both of the dogs outside before we practiced the choking methods - the teacher said that dogs often get disturbed when they see people whacking the backs of the dolls during the class.  I know Layla wouldn't have liked it.  She is incredibly sensitive.

If you have a baby or are going to have a baby - it certainly couldn't hurt to do this and I would actually highly recommend it.  As parents and grandparents and aunts and uncles and babysitters, we should be as prepared as possible.  I am not sure that in my case it helps much with my fears of the same thing happening again because Max was given CPR and it didn't save him...but it helps me feel a little more confident about being able to save a life under different circumstances.  Just so you know, when the teacher left, he gave me a great big hug.  Guess he was able to not take my shut downs too personally.  Good guy.  If you live in the LA area and want to take a group class or have someone come to your house for a personal class, let me know and I will send you his info.

Fathers Day Round Up

Ted's grieving is so private, I felt I should get his permission before I told you anything in this post.  I feel so protective of him.  I don't know why it upsets me so much, but when I hear about some of his interactions with people, I get the feeling that they don't think Ted is grieving Max - or at least, that he is over it by now.  Ted doesn't seem to really care what anyone else thinks.  I admire that.  So, why does it bother me?  I guess I want him to feel supported.  But, I suppose what he needs to feel supported is not what I need.  He also doesn't need many people to support him.  In fact, I think he doesn't want support from everyone.  I keep hoping that through my blog and visits with me, those closest with me will have an "a-ha moment", where they finally understand how tragic it is that we lost Max.  Ted knows that most will never understand and he feels no urge to try and explain it.  It's the old gender thing I guess.  I crave intimacy in my relationships.  I want those closest to me to want to understand.  Ted doesn't have as many expectations.  His closest people are people that serve different purposes in his life - those he talks about sports with, those he like to hang out with, those he likes to drink beers with, those he grew up with.  They will never understand, he says.

So, despite my husband's disinterest in sharing...I am sharing a little bit about this weekend (with his permission and I hope I don't cross the line).  Perhaps it is selfish.  I still think there are people out there who genuinely want to know how Ted is doing and especially, how this weekend was for him.  I cannot pretend to know what goes on in his head but I do know that this weekend was hard.

I should start by saying that I take full responsibility for poor planning in the sorting of Max's room.  It didn't occur to me that the day before Father's Day would be especially hard for Ted.  Every day is so incredibly hard for me, for us.  But, when I think about it, the anticipation of Mother's Day, was almost worst than the day itself.  I had a full melt down the night before and a day or two afterwards.  I should have known better but he always seems so strong to me, he doesn't tell me how his emotions are fluctuating.  I just wasn't thinking.  Next weekend is Max's headstone unveiling and the next week I will be 36 1/2 weeks pregnant, which is when we delivered Maxie, so I guess I felt like I wanted to get the newborn clothes sorted and the 9 months clothes packed away sooner rather than later.  Plus, every time I brought up going through Max's room, Ted would say "I'll handle it.  Don't worry about it".  In my brain, I actually thought that somehow this task wouldn't be as hard for him.  I am so sorry Teddy.  I should know better than anyone that everything that sounds like it is going to be hard - will be.  It was SO hard.  And, it isn't like we sat in his room and bawled our brains out.  In fact, I felt closer to Max at times than I had in so many months but, you see, that is hard too.  Plus, we really got into it.  We washed the car seat cover, cleaned out his closet and organized it, went through all of his things.  Thank god my mom was there taking charge.  It couldn't have been easy for her either.  What can I say?  It just sucked.  Every step we take is an extra painful stab in our hearts, which are already bleeding so profusely.  Every step we take is a step away from Maxie.  I could actually see the pain in Ted's face.  At times I wondered if it wasn't even harder for him than us.  He told me later that having to do it during Father's Day weekend was extra difficult.  Of course it was.  We should have waited.

There were no real plans for yesterday.  Ted knew he wanted to go for a bike ride and wanted to watch a basketball game in the afternoon.  We took the dogs to the dog park in the morning and then went to breakfast.  Somehow we lucked out big time at breakfast and managed to hit the only restaurant in America that didn't have a bunch of families celebrating Father's Day.  We came home and relaxed a little bit before Ted decided to go out on his bike ride.  I asked him where he planned on going.  Ted likes to go on really long bike rides.  Because the traffic is so bad in LA, he often gets to places that feel very far away and then back again, quicker than it would take me to do the drive.  Recently, he rode out to where the 405 and the 101 met, I asked if he was going back.  I suggested that he ride to my dad's house to say hi...a LONG ride.  He told me he had other plans.  I knew what he meant by the expression on his face.  He was riding to the cemetery to visit Max.  Ted gets comfort from the cemetery.  I don't.  Another way in which we grieve differently.  Of course he wanted to spend part of the day with his baby.  Please make no mistake friends - Ted FEELS this loss deeply.  I think he spent a while there.  He sent me a photo of Max's headstone that he designed and that is now in place.  It is so perfect and so incredibly wrong at the same time.  Eleven months later - this doesn't feel real.  Our baby is gone.  We are still (permanently) living this nightmare.

When he came home, he suggested we walk to a nearby bar and have lunch.  It was a longer walk than we expected - about 2 miles.  I was getting overheated and lots of round ligament pain - plus, Little M started kicking his face off during the last few blocks.  I so wish that pregnancy didn't slow me down.  The last few months for me seem to be pretty physically brutal.  They were with Max too.  Anyway, I'm glad we went.  The bar we went to has a million games and we sat and played a weird gender based (read: sexist) trivia game that made us laugh.  We ate a "bad choice" lunch that gave us both heartburn later. We talked about Max and grief and relationships.  We talked a lot about what I wrote about up top - about caring whether other people understand or act sensitive.  His expectations are much lower than mine and probably a whole lot more realistic.  That being said - he gets hurt feelings too.  He also has been let down.  He has people that he doesn't feel as close to since losing Max and others who have really risen to the occasion.  He is just not as surprised by it all as I am.  He says he can't expect anyone to understand how he feels and likened it to the "not knowing" about parenthood that came before having Max.  Very true.  I guess I just feel like whether you understand or not, you've got to know that we are in deep soul-crushing pain and I just can't believe how few people are sensitive about that.  The elephant in the room is that we are barely getting through this difficult time.  It has taken its toll on every part of our lives.  We took a cab home and then sat on the couch for the rest of the afternoon. He watched the basketball game, I read my book.  We talked a lot about Baby M yesterday....a lot about Max...a lot about life.  I worry that I make him talk too much.  That is what wives do.  And he doesn't always want to talk (that is what husbands do).  We connect so deeply but what we need is so different.  That can be really hard for both of us.  "What are we going to do?" I sobbed as we got into bed last night.  "About what?", he asked.  "About this life we are living.  We can never be happy again".  "You don't know what the future holds.  You don't know we will never be happy again.", he replied.  "I can never really be happy if Max can't be here to be happy with us".  He sighed and took deep breaths.  "I'm sorry", I said.  I had intended to keep it bottled up as best as I could, at least for yesterday....at least for Fathers Day.  I failed.  "When you talk about your life, you are talking about mine too, you know", he said.  "Ya, that's why I asked 'What are WE going to do?'", I replied.  The "conversation" ended there.  There are no answers.  I don't know why I ask the questions.  It feels so helpless.  We went to sleep.

Tomorrow will mark eleven months since we lost Max.  We have gotten through a lot of "firsts" in that time - birthdays, holidays, memories.  We still have a few more firsts to get through - the hardest being the year mark.  While some things have gotten easier, some things are so much harder.  I think Ted would agree.  I am sure if you asked Ted about Fathers Day, his story would be very different from the one above.  It would probably go something like this "Took the dogs to the dog park, went to breakfast, took a bike ride, got some lunch, and then watched the game".  The best I can do is give you my perspective.  I hope I didn't give too much information.  Every day that passes, we are a little further away from our last memories with Max.  We are handling it.  Differently.  But, we have made it this far and we will continue to muddle our way through this together.

Father's Day

Dear Teddy,

On this Fathers Day, I am thinking about how lucky our two boys are to have you.

I have a vivid memory from our early days of dating. We were walking along the bottom of some cliffs on the beach in San Diego and telling each other our plans for our future families....not “necessarily” with each other at that point....we were still feeling each other out. I wanted 2-3 children. You said that sounded about right. We talked about names. You shot down a couple of my obscure Hebrew names, I thought I could bring you around.

As it became more and more clear that we would end up together, we spoke more and more about children. How we would raise them, what traditions we would pass on, what kind of summer camps we would send them to (I said Jewish camp, you said basketball camp). As soon as we married, we began planning for a baby. Maxie was conceived five months later. I found out that I was pregnant with him one weekend while you were away on a ski trip with a bunch of your high school buddies. It was so hard to wait until you got home to give you the news. I cried, you hugged me....we were both over the moon.

Maxie's birth was the very best day of both of our lives and I could see from the very beginning of his life what a wonderful choice I had made for my husband. You were so proud at his bris. I knew you were excited to get to father this beautiful little boy.

You brought so many traditions to our home in the short time that we were blessed with Maxie. You are the one who brought music to the morning routine – which is why I believe it was our favorite time of day. Maxie's smile grew exponentially whenever his daddy entered the room. He loved you so much. He knew how much you loved him too.

I have never seen so much love and loyalty as I did when Maxie was in the hospital. I don't think you slept for 48 hours. You were by his bedside standing then sitting, then standing again, talking to him, playing music for him, begging him to stay with us. I remember you looking at me and saying that you would never be the same again. I know, in my heart, that Maxie felt you there with him. He knows that you wouldn't give up. I am so sorry that you have been through this my love. Nobody deserves this less than you. You are a person who brings joy and laughter everywhere you go. You deserve nothing but happiness. You are more deserving than nearly anyone I have ever met.

Baby M will be here soon and he is one lucky little boy. He has a super fun, incredibly loving and devoted father. I know that you will take good care of him and love him as much as you love his older brother. I am so sorry that this Fathers Day, none of your children are physically here for us to celebrate YOU with. You deserve to be celebrated because you are simply wonderful.

Teddy – I love you with all of my heart. I would do anything to ensure happiness for your future. I know that your second little boy will bring a genuine smile back to your face.  I can't wait.  I hope that next year, Fathers Day is a much more "Happy" occasion.

XOXO – Your wife

Glimpses

Sometimes I catch glimpses of another path.  A path where I learn to enjoy this life I've been given, even in the absence of my beloved.  A path where I spend time with family and friends and enjoy them, while still honoring Maxie's spirit and loving him with all of my heart.  It is a path that I want to walk so badly, even though I resent having to gather so much strength to do it.  It is a path that I know every bereaved parent needs to choose eventually, or they will wilt away, and suffer for the rest of their time here.  I try to convince myself, or have faith or remember that this life is temporary.  Max and I will be together again.  And when that happens, we will get all of eternity to play.  But, I get scared that it is just a fantasy.  It seems that I must eventually figure out how to get through this life as easy and quickly as possible.  It just makes me so mad that I even have to contemplate how to do that.  What seems to help just a little these days is talking to Max: late at night, when the whole house is quiet, I sit alone and tell him how much I miss him - how much I love him - how I can't wait to be together again.  I tell him my dreams and hopes for his little brother, for his daddy and I, for his future siblings.  I tell him how much I wish he was here to be momma's little helper, so that I could watch him grow and play like a big boy.  It gives me time to connect and reflect.  I think he would want me to choose this other path.  I hope that I can find the strength to make that choice.

Today I must gather all of the strength that I can muster because we have the hard task of going through Max's clothes to see what we will keep for Baby M and what we will put aside because it was quintessentially "Max".  My mom is coming over to help.  I can't imagine it will be easy for any of us.  Just being in Max's room hurts my insides.  But, it is the next step on this path - a step I have dreaded for eleven months - just like every other step on this journey.  There is no getting around it - only through it.  I am praying for strength today and every day....because I am not "strong", I am just a woman who has been be handed a choice that no person should ever have to make but that so many of us do.

Memories hurt

I have been intending on writing about our family trip to Costa Rica for some time now.  Every time I sit down to write the post, I become completely overwhelmed and I stop.  I don't want to forget one minute of that very special trip but the memory of how happy and complete we were hurts too much. Beth, Sadie, Teddy, Maxie and I spent a week at our family vacation home in Costa Rica last January.    It was such a special vacation.  We sat on the beach in the spot where Ted and I got married, we watched the monkeys play on our balcony and pointed them out to Sadie, we dreamed about the day Max would be big enough to see and understand real monkey playing.  How blessed are we that he would have been able to see that so up close on his own balcony.  It breaks my heart so much to think about it.  I wonder honestly if I will ever be able to go back there again.

Yesterday Beth sent Teddy and I the most special care package.  There was a shirt for Teddy and a book about babies for me and some aromatherapy and the most heartfelt, lovely cards - one for each of us, expressing her love for us and her love for and grief for Max.  Teddy and I were so moved.  She also included a little disk with home movies she had taken on our trip last year.

Teddy wanted to get them saved on his computer ASAP.  So, after dinner, I came into the bedroom to read and he went to download and watch them.  Just hearing the voices just about killed me.  Sadie asking, "Where's Maxie?" and always, "MY cousin!".  Ted and Beth and I taunting her, saying, "Is Maxie MY baby?" and she would reply "MY baby!".  We sound so happy.  So proud of our children.  I had to put my fingers in my ears.  It will never be the same.  I asked Teddy to turn down the volume.  He watched the rest of the videos with his headphones on.  He came into the bedroom afterwards looking so sad.  I know he feels like I do....It will never be the same.  Losing our baby is still just so unreal.

I couldn't sleep.  I am in so much emotional pain.  And, no matter how I try to describe that pain here, it still feels watered down.  Because there are no words.  There are no words at all for this much pain...for this kind of longing.  Oh my god!  I long for him so much.  His little face, his squishy thighs, his two toothed grin.  I wish there was another side that I was moving towards but I am gathering that I am just moving towards getting used to this pain.  The idea of living with this pain for one more day, let alone the rest of my life, it unbearable.  It is simply unbearable.  And, the "hope" everyone is counting on for our future with Baby M feels so out of reach sometimes, with his genetics being so undetermined.  How can I throw myself into that hope when I am so so scared?  I know I will love him with all of my heart but honestly, I cannot forget the reality of what I don't yet know.

I was doomed to cry myself to sleep last night and I hate that.  It gives me the most terrible headache.  So, I sat in the living room and spoke to Max.  I begged him to come to me.  I begged him to come back to me.  I begged him to speak to me....to tell me everything is going to be ok for his little brother.  I asked him to please come and sleep between his daddy and I...to give us some comfort while we continue on this journey.  I spoke to him until I calmed down enough to go back to bed and sleep.  His spirit is all I have left.  It is the only thing, other than Teddy, that brings me any comfort at all.  I miss him so much.  It shouldn't be like this.

Get your sleep now

Get your sleep now

I am 34 weeks pregnant. If all goes according to plan, I have just 6 weeks left to go before Baby M gets here. Of course, I know that plans mean nothing – Max was a month early - something that I LOVED at the time. I couldn't wait to meet him. One month early felt like the biggest gift in the world. Of course, the other thing that didn't go according to plan was losing him after only nine and a half months. I had planned our whole future together. I want Baby M to cook inside of me as long as possible. Max's early arrival is one of the MANY things I pray did not cause my baby to die.

At 34 weeks pregnant with Max, I did not sleep well. I had a lot of work things on my mind constantly, like a trip I was helping to organize for two of my board members to go to Israel and meet with the Mayor of Be'er Sheva. In fact, the night that my water broke, I was still emailing details to them and to the Israel contact while in the car on the way to the hospital....and then from my hospital bed.

We were also still working on our kitchen renovation (I should say TED was working on our kitchen renovation) and we were staying at my mother's house. We were so lucky to be able to stay there. Trust me. I know it was a blessing. But, Ted is too tall for the guest bed so we were sleeping on a mattress on the floor, which was actually quite comfortable but SO hard for me to get up from for my hourly visits to the bathroom. It's my fault really. I could have slept on the guest bed, but I wanted to stay next to Ted. There was also a heat wave and our room was not really getting air conditioning.

Ok – but really, it was being super pregnant that was making sleep so impossible. It is hard to sleep when you are super big and there are a million hormones surging through your body and there is a little dude inside of you who always wakes up and starts looking for a comfortable position inside of your body as soon as you lay down.

Ted and I always thought the most ridiculous thing that people said to us was, “Get your sleep now, while you can”. First of all – who was sleeping? Secondly, can you bank sleep? I wasn't aware. It was just one of those things people say. What they mean is “I know something you don't know. You aren't going to get much sleep when your baby comes! Your life is going to change SO much!”. Of course, that is true, but I still think that you can't prepare for it. Sleep your face off, it won't do much good once the baby comes.

Which brings me to my next point – which is, I've been sleeping my face off. I have ALWAYS been a good sleeper. In the past, I was out the second my head hit the pillow. These days, I have a little bit of trouble falling asleep but once I am sleeping, it literally lasts for a minimum of ten hours. MINIMUM. The only time my life seems manageable is when I am asleep. That is probably not a good sign. My grief counselor says it is fine – it is restorative. Other grieving parents have told me that they also slept a lot in the first couple of years. Of course, I didn't sleep much at all in the first four months after losing Max – so, does that banking sleep thing work in the opposite direction? Could I be making up for all of the sleep I lost?

What I know is that it doesn't matter if I sleep fifteen hours a day until my little peanut gets here, it won't help me through the sleepless nights of nursing. But, see, the difference between this time and last time is I DO know what it is like to not get enough sleep with a newborn. But, I have a comparison that most other mothers do not have. I ALSO know what it is like to get no sleep because you have no baby to wake up to or for and because you are haunted by the nightmare of your tragic loss. I am thrilled that in just a few (long) weeks, I get to be up all night again with a newborn. In fact, I am trying to sleep the time away, in part, to get there quicker. Hopefully, all of this sleep I am getting now will come in handy when I can't get it later....AS IF! 

Managing this nightmare

I am kind of pissed off this morning.  I stopped my internet search on metabolic disorders after the meeting with the geneticists last week.  Seemed like I had learned all there was to learn that afternoon (not much).  Then, this morning, I did a search on the disorder Maxie was found to have a single mutation for.  I found a link to the most basic website about newborn screening: www.newbornscreening.info.  Here is what the website had to say about genetic testing for the disorder in question:

"Genetic testing for this deficiency can be done on a blood sample.  Genetic testing, also called DNA testing, looks for changes in the pair of genes that causes this disorder.  In some children, both gene changes can be found.  However, in other children, neither or only one of the two gene changes can be found, even though we know that they are present."

Hmmmmm......in other words - NOT SO UNUSUAL THAT THEY WOULDN'T HAVE FOUND THE SECOND MUTATION!  Not finding a second mutation is not an indication that Max didn't have the disorder!  Not so completely confounding and hard to explain at all!  Meaning - Max MIGHT have had this disorder and perhaps in a "not so unusual" presentation.  Meaning - Ted and I MIGHT both be carriers even though they didn't find my hidden mutation.  Meaning - Maybe Baby M HAS a 25% chance of inheriting this thing after all.

I don't think I am overreacting here.  I think someone needs to consult with a metabolic disease specialist and I am annoyed that once again, it falls into the hands of the "Project Manager" (me) and that this most basic piece of information wasn't found by the people I paid $6500 to for information about what the hell happened to my baby!

Birthdays

Yesterday at 6:30 pm, I sang 'Happy Birthday' quietly and through many tears to a little boy who I never met who would have been 15 years old had he not died by suicide 8 months ago.  I didn't know him but I met his mommy, daddy and older sister at the Afterdeath Communication Conference I attended in April. I don't know him, but I know how much his family hurts every minute of every day now that he is gone.  I know he was a special little boy and the baby of his family and that he left behind 4 brothers and sisters who feel lost and alone.  I do know that their story touched my soul and that my heart feels a little happiness whenever I see his mother's name in my email inbox.  We try to support each other as best we can through this terrible pain.  When she told me that friends all over the world would be singing Happy Birthday to her lovely son at 6:30 yesterday, I put it in my calendar with an alarm.  If he was listening, I wanted him to know how much his mommy loves and misses him...so much so that she has an army of stranger-singers to make sure he knows how much he is still adored.  I set an alarm to go off annually in my iphone so that even when she doesn't remind me or if (g-d forbid) we fall out of touch, I will still remember to contact her each year on this important day.

I am terrible with birthdays.  I have a general idea of when friends birthdays are but since I have never been big on my own birthday, I flail with other peoples.  I have been chewed out more than once by friends who have reminded me that just because I don't care about my own birthday doesn't mean that I am dismissed from having to remember other people's.  It was obviously hurtful to certain friends when their birthdays slipped my mind.  I started putting birthdays in my calendar a couple of years ago.  I am getting better at it.

These days, my calendar is filled with birthdays of children I have never met, who no longer exist on earth.  These birthdays are more important to me than anyone else's birthdays.  These birthdays represent lost dreams....something that hurts the very core of my being.  I fill my calendar with these birthdays because I know that these days are more important to their parents than their own birthdays are or ever were.  And even if you are someone like me, who doesn't feel the need to go big on your own birthday, you know that you want to go big on your kid's birthday.  I was getting so excited for Maxie's first birthday before he died.  I couldn't wait to see the happy look on his face as we sang to him and brought him presents and showered attention on him all day long (in some ways, it would be like any other day when we did all of those things for him but BETTER!)  But, Maxie never got a first birthday and if I think about it for more than a second, my heart collapses.  I will be deprived of his birthdays for the rest of my life...and thus far, the day he was born was the best day of my life....a day I would want to celebrate with my whole soul but that instead will be (at least in part) a day of mourning for me.  I have filled my calendar with the birthdays of all of the babies whose parents I have connected to because I know that in a few years, people will forget about those children's birthdays - maybe not everyone will forget - but many will.  Most will be so caught up in their own worlds, planning their own children's birthdays (and their own) to remember the birthday of a child who is no longer here.  I want to make sure that someone remembers.  Every child deserves to be remembered.  Every child deserves to celebrate their birthday.  Every child and every life counts and has meaning.

On that note, and with the one year anniversary of Maxie's death approaching (July 19th), and with the birth of Maxie's little brother also around the corner, Ted and I have set up a fund in Maxie's name at First Candle - an organization dedicated to making sure that children reach their first birthdays.  The fund we set up will support SIDS awareness, advocacy, prevention, research and will also support grieving families.  We feel blessed by all of you to have reached our goal with Maxie's Forest within only one year!  Over $100,000 was raised to plant thousands of trees in Maxie's sweet memory.  It's really remarkable!  Thank you so much for the support you have given our family over the past (almost) eleven months.  I don't know where we would be without you.

Passing another Sunday

Yesterday Ted and I visited Lake Shrine in the Pacific Palisades.  It is a place that I never knew existed before my childhood/family friend, Stefanie Elkins, emailed me months ago to suggest that I visit.  It is a meditation and spiritual retreat on a beautiful lake, hidden in the hills just above the beach and below the many canyons of the Santa Monica Mountains (Thank you Stefanie - it is just lovely!).

The grounds are so peaceful and it was a beautiful day.  We enjoyed walking around and taking some time to sit quietly in one of the meditation chapels.  As we came around the side of the lake and got a close up view of the water, we saw turtles sunning themselves on the rocks and swimming with gigantic coy fish, just under the surface.  In an instant, my heart felt pierced with the obvious realization that nothing is as lovely without Max and that I would never get to hoist him up over the little railing to look down at the turtles and the fish. I would never talk to him about any other animals or take him anywhere or ever be with him ever again.  It is something I know all of the time but the reality and brutality of it strikes me from out of nowhere sometimes.

Now, excuse this digression but I promise it relates.  Many years ago, at a birthday party for my friend Jessica, this guy got his eyes set on Carmen and spent a good portion of the evening feeding her some of the best lines I have pretty much ever heard.  It was an eighties party, and he was wearing a long fur coat and sunglasses (as I recall).  He would look Carmen up and down slowly, and say things like, "I wanna walk around with you"...."I want to take you to the zoo", again, real slowly.  He was serious.  Another good one was, "I wanna hold your hand".  The simplicity of his desires and his interest in savoring the idea of enjoying the mundane with Carmen was beyond awesome.  We have been laughing about this for nearly ten years.  I bring this up only because honestly, as silly as those things sounded in the context of that guys pick up line, those are exactly the things I want to do with Max.  By now, he'd be toddling....and all I want to do in the whole wide world is walk around with him.  I want to hold his hand....not just have him grab my fingers while I nurse him....I want to actually hold his hand while we walk around together.  When he was born, we bought a family membership to the LA Zoo.  It is practically walking distance from our house and we went there a bunch of times.  By now, we'd be pointing out animals to him and telling him about where they live and what they eat.  I wanna take him to the zoo.

We left Lake Shrine yesterday and decided to drive through and then eat lunch in Topanga Canyon (on our list of places to relocate to...it is on Route 27!)  We pulled off the main road and into a little mini mall to get a sandwich.  Inside, there was a baby about a year and a half old, pushing a chair noisily around the small restaurant.  It was like nails on a chalkboard - and I am talking about seeing the baby walking around...the loud and unbearable noise just compounded the stress and anxiety of the moment.  Ted and I were panicked.  It was so loud.  And the mom just stood there, barely looking at the kid, letting him push and push and push this metal chair along this concrete floor while people tried to enjoy their lunch.  We were giving her the death stare when she caught my glance, looked down at my belly and then gave me another look like, "Oh, you know, kids will be kids!"  I hate her (is that too strong to say?  Because I kind of actually hated this woman).  Moms with children who are pushing the limits always give me that knowing look as if because I am pregnant, I must be on their team in their bringing their kid someplace where the kid is acting out and being ignored.  I am not on their team.  I am probably less on their team than any other non-kid having person in whatever joint we happen to be in.  Ted and I made a quick decision to get the hell out of there.  We turned the corner and found a little bistro - a better choice anyway.  We sat down to eat and barely spoke a word all through lunch.  I started to think about all of the couples Ted and I have seen out to eat over the years who barely talk to each other.  We always comment about how miserable it must be to not have anything to say to the person that you are sitting across from and presumably spending your life with.  Perhaps those people have lost children too?  Or someone/thing else?  Perhaps they had plenty to say, but didn't really need to.  Ted and I don't need to talk to know what we are both thinking.  Sitting there, over lunch, thinking about the beautiful day and the beautiful place we'd just been and crying behind my sunglasses, there was really nothing to say.  We are embarking on a new life with a new little bub without our first one.  My heart breaks again and again.  Missing Maxie more every single day.

The slight, barely detectable, incremental changes in my grief

My grief is changing – ever so slightly – but there are changes. I don't wake up every morning having the wind kicked out of my lungs at the realization that Max is gone. I wake up knowing that there is no Max, thereby escaping the initial pain and horror that I used to experience each and every day. There is something more intensely agonizing about this knowledge but somehow less “painful” (I use that word cautiously. I still feel the same amount of emotional pain, but I do feel less physical pain).

I don't feel as angry at the people who have hurt me, the ones who have ignored that this happened, those who are too selfish to acknowledge our loss. Instead of anger, I actually feel sorry for them. I am more embarrassed for them than angry at them. I used to feel trauma thinking about the way some people behaved after Max's funeral, at his shiva, and in their interactions with me through Facebook and email. Now I just feel detachment to those people and it is much better than the active anger that was eating me alive. I used to imagine confronting them. Now I know that they are no longer important enough for me to confront.

I used to feel like my soul was trying to escape my own body to go and be with Max. That is how it literally felt. It was a six month (plus) out-of-body experience. Thoughts of death and dying: Max's, mine, Ted's. I wanted to die. I was scared other people might die. I dreaded the knowledge that I had the rest of my life to live before I could be with Max again. My soul feels more grounded now though I still imagine my reunion with Max every day. Instead of worrying about Ted and my family constantly, I have surrendered to a certain extent, knowing that there is nothing I can do. Where I have not been able to surrender is where Baby M is involved. I am vigilant about his kicks, his post natal care, his diagnosis. I know that he will sleep on his back, in his co-sleeper, in our room, with a pacifier, with a fan on, with nothing else in the crib, with a snuza monitor attached to his diaper. He will have several tests done at his birth, he will be checked by a hepatologist. My whole family is taking infant CPR together at our home next week. If I lose him, I lose everything.

I don't cry every single day, though I still cry most. Max is still in every thought I have. Every. Thought. I. Have. But the crying hurts more than the sadness alone and I am exhausted from the physical exertion of ten months of crying with my whole soul. It is just too impossible to keep it while I am so pregnant. Still, holding in the crying hurts too – but it only hurts my heart, which is already so broken. Crying hurts every part of my whole body – my head, my back, my eyes, my heart, my lungs, my face...everything. I still do cry with every part of my body – only, less often. A few times a week, rather than every single day.

I am better at “faking it”. I am still not good, but I am better. I am at my best with Ted, the one person who knows better than anyone that it is all an act. It feels like a necessary way to preserve our marriage, his sanity, our hopes for our expected baby.  I need him to feel hopeful even when I don't. I worry about his happiness more than I worry about my own.  I try harder with him because I want him to have moments of relief from this unrelenting storm of grief.  That is more important than anything I am experiencing.  Sometimes I fail, and when I do, I fail miserably.  I fail the kind of fail where I am found by him on the bathroom floor, in a pool of my own tears and spit up, crying so hard I think (and hope) it might kill me.  I am still only human.  I am still a mother who lost her most precious beloved baby.  

All I am saying is that I think I am getting a little better at integrating this pain into my life.  I used to refuse to believe that this was my life.  I honestly just could not believe that this was how my life had turned out.  The life I worked so hard for.  The happy, happy life with everything I could possibly need.  It wasn't rich, it wasn't glamorous but it was full of love.  I am slowly accepting this life of more pain imaginable.  I recognize now, after all of these months that this is actually my reality and it isn't going anywhere....and that is somehow what comforts me now.  Hoping for anything more is in the past.