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.  

The roller coaster of grief

This is an amazing article that was written by another blogging mommy who lost her child.  It is the most true to life description of this journey that I have been on since Maxie died.  Please Click Here.  I know you don't like to follow my links but this is just about the very best description of the emotional ride of losing a child.  It is beautifully written and felt like it spoke directly to me.

The evolution of friendship

My friend Greg came over to visit and brought me lunch the other day.  Greg has been one of my best friends for over 20 years.  We met on the first day of Freshman Orientation at Pitzer College in 1991.  He was my suite mate and was soon to be my most entertaining friend and my greatest nemesis.  As he matured (and maybe as I did as well), we became so much closer, he stopped torturing me, and we began sharing a good portion of our free time together as well as most of the important milestones in each others lives.  Greg and I co-host an annual Passover dinner, we have always talked on the phone several times a week, we each signed each other's ketubahs (Jewish marriage contract) at one another's weddings.  When Max was born, Greg and his wife, Ayala, were amongst our first visitors.  When Max died, Greg was at our house every day for almost two weeks straight.  He enlarged the photos of Max for his funeral service, he went on food and beverage runs for us, and he supported us every day.  After Max's funeral, Greg drove people up and down the very steep street to my mother's house from their cars until every one who wanted to pay respects had made it safely up the hill.  Greg is family to me.

While Greg is better at expressing emotions than most men, he is still a guy.  I have never been a super emotionally expressive person though and we have always been able to meet in the middle.  He has been a perfect best friend for me all of these years.  Over the last ten and a half months, I haven't been leaning on him as much as usual.  I have felt the strain on even my very closest relationships, but I have been (and still am) too tired and broken to deal with it.  I have felt a greater need to save myself than I have felt to save my relationships.  I have had the sense that he, like so many others, has been waiting for me to "get better" so we can go out and get a couple of beers or something.  Turns out, I wasn't entirely wrong.  He is a sensitive and compassionate person but he has been waiting for me to be the person I once was not really realizing it may not happen.  Speaking to him about what this terrible journey has been like for a best friend turned on a lightbulb over my head.  For a moment, I understood what it was like to be the friend of someone who has lost a child (or who is in the midst of life altering, deep grief or trauma).  Obviously, I would trade places with him and every other friend I have in a heartbeat, but I do understand a little better that my friends have had their own grief and it hasn't just been for the loss of Maxie (though, in my heart, I wish that was everyone's only grief.  In my mind, there is just nothing worse than him not being here).  My friends have lost me.  The old Abby was special and appreciated I guess.  Sadly, she is gone.

Greg explained to me that for months after Maxie's death, he questioned our mutual friends about whether they thought things would ever be the same, whether we would all just hang out again in our backyard and shoot the sh*t and have big meals and drink beers.  He said that our friend Carmen kept telling him that it doesn't matter, it will be what it will be (Thanks Carm).  I am not sure if he knows this, but I sensed from him that he was waiting, and it pushed me away.  You see, I wonder those things also.  As much as he misses the old Abby, I miss her too.  I would give anything to be that fun, carefree person again, but she is gone...at least for now.  She died when Maxie died.  The pressure I have felt from the outside to be myself again has just compounded the grief and pressure I already feel too much of from inside of myself to try and reconcile my loss and trauma.  His gradual understanding that old Abby is gone and that in order to maintain a relationship with me, he needs to accept new Abby, is what has brought me close to him again.  He said he finally understood why I come up with a relocation plan of action every week (Israel, Portland, Seattle, Santa Fe....) - I want to make new friends who don't have any expectations of me, who aren't waiting around for me to be my old self.  The new friends don't know old Abby, they will either like or not like the person I have become.  There will be no comparison to who I once was.  Perhaps new people will even think that the new me is special in her own right - even though she isn't as loud or outgoing or funny - even though she is quieter, more emotional, more introverted.  From time to time I tell Ted, "Let's just go somewhere and make all new friends....start from scratch!"  Greg is not the same person I met in the fall of 1991, but his transformation has been gradual.  His transformation over the time I have known him has been no less dramatic than my transformation over the last ten and a half months but mine happened overnight.  He hasn't had the time to get used to it yet.  It took Greg some time to realize that I am still Abby, I am just a different version and we can still be close, even if we aren't doing the same things together that we used to do.

There were those who instinctively knew from the moment of Maxie's death that the person that they had known was gone.  Those people have met me where I am at throughout this journey.  It has been a relief to me that those people exist.  They have been the few that I have felt safe with.  There were those who have tried to accept it and have done their best to meet me halfway.  I need to be in a special mood to connect with them, but I love them and appreciate them nonetheless. There are those who are still waiting around for me to return to my old self and that has pushed me away as much I have pushed them away, as they have wondered why I don't want to be around them.  After I posted about the "normal night on the town" I had with Suzy and Spencer a couple of weeks ago, I got several invitations to go out.  It was in some ways, my worst fear realized.  Are people waiting to re-engage in our friendship until I am old Abby again?  I pictured a collective sigh of relief had been let go - thoughts of "oh good, time to put this all behind us".  But, like I keep saying, it's not behind me.  It never will be. My son was the most important, most wonderful, most lovely person in my life.  Things will never be the same without him.  Our time out with Suzy and Spencer a couple of weeks ago was colored by our new normals.  I have been wondering for ten and a half months if people will love me anymore now that I am not the fun, funny Abby.  The new Abby can only really accept those who are ready to accept me, as I am now.  I am not ready for those who are still waiting around for an old version of me to resurface.  I don't want our friendship back as it was any more than many former friends want me back in my more broken form.  Those who are waiting for the old Abby have no concept of the impact my son and losing him has had on my life.  It has been that lack of recognition that used to (and sometimes still does) feel like a dismissal of Maxie and a belittling of my grief.

What a relief it would be for me to know that you accept me as I am now. That you accept me knowing I may never be my old self again.  How nice for me to know that you might reach out to me and not just wait until you see me again at the next dinner party, or book club, or holiday celebration or wedding or night before Thanksgiving ritual.  How reassured I would feel knowing that we connect somehow without having to "do lunch" or "get drinks" or "go out on the town".  I may never see you again if you are waiting for me to show up at occasions or be ready for an activity.  What a relief it might be for you too if you could allow yourself to stop waiting for someone to show up who no longer exists.  How much easier might it be for you to realize that you don't have to figure out how to make me smile or laugh and distract me from who I am now; that all you have to do is say you are thinking about me, or spend some quiet time with me, or hang out in a more casual setting with few expectations.  How much pressure it must be on you to try and make me forget the unforgettable by coming up with jokes and stories and activities for us.  No wonder I never hear from you.  What an incredible burden that would be!  Do I know if we will ever drink beers and shoot the sh*t in our backyard with you again? - Probably?  Does it matter?  Can we still be close if things are different?  I hope so.  I can't be pushed into becoming the old me suddenly.  I may get there again but it will take time.

* By the way, I only use Greg as an example because I so thoroughly appreciated his honesty with me about how the loss of "me" has affected him.  He is one of many people who have felt this but he is one of my favorite people and also one of the first to try and relay to me his "grief" about losing me.  I am grateful that he is reconciling his loss (of me).  The thought of not having him in my life is too overwhelming.  So I thank him, ahead of time, for being a good sport about letting me use him as an illustration of how my various relationships have and have not evolved since the death of my baby.  Thanks Greg.  Love you lots.

Heaven in my lap

Maxie felt like heaven in my lap.  He was so well behaved and cuddly.  I loved being able to whisper in his ears, to rest my cheek on his head, to put my arms around him, to kiss the back of his neck, to smell his sweet baby scent.  My arms are empty.  My lap is too light.  My baby's scent is missing and gone.  His absence is ever-present.  Maxie was heaven in my lap.  Maxie was heaven.

My little baby boy - there is nowhere I'd rather be, there is nobody I'd rather be with - than with you, right now.  You are my heart, you are my light, you are my joy.  You are the best thing that ever happened to me.  I miss you more with every minute of every day.  You are my love, love.  Life's too hard without you - my perfect, sweet, easy, beautiful baby boy.

Our meeting with the geneticists

Ted, my mom and I met with the geneticists yesterday afternoon.  What I won't be able to do in this post is to clearly tell you what we learned.  The meeting went better than I thought it would - the findings were more complex than devastating and certainly left a lot of questions unanswered.  What they did find was that Max was a carrier of a rare genetic fatty metabolic oxidation disorder.  They found that Ted has the same mutation.  What that means is confusing.  Max was a carrier.  He did not have the disorder.  In other words, he had one mutated gene - not two.  As a carrier, he should have been totally unaffected by this disorder.  They are currently retesting that set of genes in Max to see if the second gene might have had a hidden mutation that didn't show up in the testing.  If he did, however, the geneticists can't explain why it wouldn't have shown up in Max's newborn screening.  Also, the disorder usually presents itself in several ways that it did not present itself in Max. They didn't find the mutated gene in me but wondered aloud if the test failed to find something hidden in my DNA as well.  They may restest my blood sample as well.

There are several hypotheses about what may have happened, but they are all just guesses really - perhaps there was something in his physical environment that could have ignited the disorder: The geneticists likened this to sickle cell anemia, where carriers are sometimes affected even though they only have one mutated gene.  He gave the example of airline pilots who are sickle cell carriers and said that sometimes the altitude changes cause a presentation of the disorder in carriers.  Similarly, leading SIDS researchers don't know why the risk factors (tummy sleeping, co-sleeping, parental smoking, temperature) result in death for some babies and not others.  It is possible that they have a rare mutation in their brain stem or someplace else that only causes death under certain environmental conditions.  Another hypothesis is that there might be other genetic mutations that are considered "promoters" of the disorder in carriers of this particular fatty acid oxidation disorder.  If that were the case, we won't really know as the field of genetics hasn't come far enough with regard to this specific disorder to understand this.  The last hypothesis I will list is that Max's death may have had nothing to do with his being a carrier for this disorder.  That he died of "SIDS" and also happened to be a carrier of this metabolic disorder may have been a strange coincidence.

I know it doesn't make sense and it doesn't really bring us much closure but I think there were a few positive take aways.  One is that they are going to be extra vigilant in testing Baby M for this disorder.  In addition to the newborn screen, they will do extra sampling to test him.  If he is found to be affected by the disorder, there are treatments.  What scared me MOST over the last week was that I spent hours online looking up this disorder and everything I found basically said that there were no treatments - as it turns out, there are ways to treat individuals with the disorder - even though none of them is a "cure".  Also, I think there are two ways of looking at the results.  One is really scary and one is reassuring.  I am choosing the more reassuring approach for now.  The scary way of looking at it is that Maxie may have died suddenly from a disorder that he didn't even have - that he is only a carrier of.  Since Baby M has a 50% chance of also being a carrier (if I am indeed a carrier in addition to Ted), the disorder may present itself without warning again.  I am choosing to chuck that fear for now (but you never know with me when it may resurface).  The other way of looking at it is that none of it really makes any sense.  That whatever happened was so statistically rare and so outside the bounds of the way this disorder would ever present itself that the chances of it happening again have to be miniscule.  I am choosing to believe that.

Obviously, the whole process still leaves me totally without closure with regard to what happened to Maxie.  It still does nothing to explain why I am not feeding my baby breakfast right now.  That part is incredibly frustrating and so heartbreaking but it is a frustration and heartbreak that I am getting used to....and I do not say that lightly as I broken to the core that I lost a child - that I lost my baby - that I lost Max - the person that I loved most on this earth - the person that I had the most hopes and dreams for - the person who has meant more to us that anyone.  Getting used to the idea that your most beloved is gone is a slap in the face.  Honestly.  But, it is what it is.  Feeling a bit of hope again for his little brother is a relief for now.

No past, No present, No future

I bought a few things for Baby M and now I am worried that I tempted fate.  I got him a co-sleeper and a little napper too.  I don't want to take them out the boxes.  I am so scared.  So, I don't think I should get him anything else.  And, I am not sure when it will be safe.  Oh my god - I am so freaking scared.  I am avoiding the future.

I haven't been in Maxie's room in months.  I used to go in there all of the time.  It made me feel closer to my baby. But the last time I peeked my head in there, my whole chest tightened up.  All of the beautiful memories washed over me and left me stunned.  I feel guilty about not going in there anymore.  I hope Maxie doesn't think I am trying to distance myself from him.  I am only trying to distance myself from the pain (not so successfully, I might add).  My mom has offered several times to go in there with me and go through Maxie's clothes and start getting the room ready for Baby M.  She thinks I am avoiding her offer.  I am avoiding the room.  I am avoiding my past.

We won't know until we know so I am moving one day at a time.  "One day (breath) at a time" rolls off everyone else's tongue but try living it.  I dare you.  Don't look at the clock to see if it is almost time to go home.  Don't book your ticket for your next vacation.  Don't start planning your child's next birthday party.  Don't think about anything but right this minute.  See how long you can keep that going.  Just try for one day.  Think of it as a "fun" experiment.  I have been trying to do this for ten and a half months.  It's making me crazy.  I am avoiding my present.

I am living in a parallel universe.  A universe where I cannot move forward, I cannot go backwards.  I am stuck in this nothingness.  I am freaked out - believing against my own will, that nothing good can ever come to me again.  That I have already had my fill of good in this life and now it is done.  I am afraid to think good thoughts and also afraid to think bad ones.  In my experience, thinking so many good thoughts for Maxie didn't help his future, perhaps my love contributed to his death in some twisted way.  Like I thought I/we deserved too much.  I often get sucked into really bad thoughts then and my grief counselor (and others) says "Thoughts are very powerful.  Be careful with what you are thinking".  I can't think positively.  I can't think negatively.  I try my hardest to not think at all.

Sunday Field Trip

Ted and I were somehow able to have a very light day (for us) yesterday in light of all of the drama going on over here.  I love weekends with Ted.  He makes me feel safe.  I get glimpses of my old self when I am with Ted: like yesterday when we both "Roger Rabbited" and "Running Manned" around our deck simultaneously when Bel Biv DeVoe's classic song, 'Poison' surprised us on the stereo.  The Roger Rabbit ain't easy in Croc flip flops at a large eight months pregnant - trust me.  I am pretty sure I nailed it though.  (On a related note, Ted told our grief counselor a few months ago that he knew that I was still in here somewhere one weekend in the fall when I broke into a torso-only dance/shoulder roll in the car to Jonny Gill's hit "Rub you the right way").  When Ted and I occasionally are so lucky to have moments of brevity, I don't have to worry that he thinks I am ok now.  We both understand that no matter what we are doing, that just underneath our surface, we both still feel completely broken.

Anyway, before the Roger Rabbit incident, we drove to Bronson Canyon to visit the "Batman Caves", where they filmed the original Batman television series.  It has been on my list of things to do since about high school.  I finally made it.  It was actually pretty cool.  It is literally a five minute walk from the parking lot to the caves.  It also happens to share a parking lot with my first summer sleepaway camp - "Camp Hollywoodland" - the most awesome all-girls camp EVER!!!!!!  After our "hike", we went and got foot massages and then lunch in Thai Town (I'm not sure if they have these foot massage places all over the country but they are $20-$25 for an hour and they actually give you a full body massage with your clothes on - super relaxing.  I have had at least 20 in the last 10 months).  We came home and Ted worked on his home remodel projects while I worked on projects for the baby.

We are trying to pass the days as calmly as possible until 1) We meet with the geneticists this week and then 2) Baby M arrives.  It is hard work.  Grieving is just about the most tiring thing I have ever done in my life.  Scratch that - it is the MOST tiring thing I have ever done.  And, it never stops.  I am so glad to have gotten through the weekend, even though I know that the weekdays are my biggest challenge.  So, here's to hoping I can get through another week.

My dream

I had the most vivid dream the other morning, just before waking up.  I have had similar ones in the past so I apologize if this is repetitive.  Baby M was finally here.  He was born and already about 6 months old.  He was so cute.  He looked so much like Maxie.  I couldn't stop staring into his eyes.  They were crystal blue.  I could see Maxie was in there somewhere.  He couldn't speak, but he kept promising me with his eyes that he wouldn't die.  "I won't leave you", he seemed to be saying.  It felt so good to hold him in my arms, to rub his little back while he rested on my shoulder, and to feel his little face pressed against my chest while cuddling.  I felt almost whole again but at the same time, still missing Max so much.  I could have stayed there forever.  It was so perfect.  I was so happy and still so sad at the same time.  That is probably how I will always feel too.  That is the best it will get if we are really, really lucky.  If we are really lucky, we will have a beautiful life with Baby M...always missing our little monkey baby Maxie.  Oh Lord!  Please let us be that lucky!

The waiting game

We've been given little tid bits of information about what might have killed Maxie all week.  The information we have received so far is minimal, but scary.  The geneticists use words like "uncharted territory" and "likely cause".  What I DO know is that the outcome of the tests that I was really praying for (that there would be no genetic cause), is likely not the outcome that I will get.  Obviously, if there was a genetic cause for Maxie's death, Baby M has a chance of inheriting the same lethal genes - this is why I would have rather paid for a test that yielded no answers than for a test that did.  So now it looks like our chances of a healthy baby that lives goes from 1 in 2,000 to 1 in 4.  And, I know that  75% chance of survival is something I should celebrate (though I am pretty sure you wouldn't), but I know a secret you don't know - THE UNIVERSE IS UNJUST.  You still think there is justice and that is sweet and tender.  I learned, when my baby died, that there is no justice.  But, my family keeps saying "We don't have all of the information.  We need to wait to find out what exactly they have learned".  They are right.  I tend to let my fears dictate my mood these days.  I know that losing Baby M is not an option for us....we just couldn't take it.  Really.  So, now I am playing the waiting game - this effing horrible game that I am playing on top of the grieving game and the depression game and the angry game.  I am waiting for the geneticists to try and convey to us all that they have learned and then come up with a plan of action to give Baby M his best shot.  If I thought I was already living my worst nightmare, I wasn't.  It seems to get worse all of the time....and all the while, I am just missing my little boy.  I miss him so much it feels like my heart will just stop beating (I should be so lucky).  I miss his little lips and his big beautiful eyes and his funny personality.  There is no way I would live through this again.  Absolutely no way.

Deliver me!

A few people suggested months ago that instead of continuing to make our painful supermarket trips, that we have our groceries delivered.  Honestly, most of the suggestions folks have made about most stuff over the past ten months have gone "in one ear and out the other".  I have not been functioning at full speed.  Ted, not knowing that the market delivery had been suggested in the past, suggested it himself last week.  He said that on the East Coast everyone gets their groceries delivered.  He said we need to look into it.  It would change our life.  He (and several of you were) was right!!!!!  

The trip to the market each week is terrible.  Passing the aisle with the baby food and diapers and then seeing and hearing all of the babies and children and happy families.  It's honestly just hell.  I know parents who have lost older children have this issue too and in many cases, they have so many aisles to "get through", seeing their children's favorite foods on the shelves.  For a while, I couldn't even look at bananas.  I still can't look at Greek yogurt.  

If you have the service available in your area, may I suggest that you do this?  Honestly - DO THIS!  We did it last week and it was awesome.  I get anxiety every weekend when I know that the trip to the store is coming.  Also, once Baby M gets here, this service will also be great.  I don't really want to lug him to the store either.  I can remember several times, being in the market with Max when he just got antsy or hungry and cried through the whole trip.  I had to leave the store many times to go breastfeed Max in the car to settle him down.  While even those memories are sweet to be honest, I will be glad to not have to be bothered with the trip with Maxie's little brother.