Sometimes I miss it

Life these days has a certain rhythm.  I don't sit around watching the clock anymore, counting the hours before I get to go back to sleep.  I don't get to spend all day in bed, blocking out the world around me.  I spend most of the day working, popping occasionally into Mo's room, where he plays with his nanny, so that I can give him kisses.  I cook dinner and make Ted's lunches and get excited about watching our shows at night.  My life is no longer devoted to grief.

It is MUCH more liveable.

And so I wonder why - sometimes I miss it.  I miss being completely engrossed in Max not being here.  I was completely committed, heart and soul, to grieving his death.  I cried most of the day, each and every day - my head hurt from all of the crying - my body hurt from shaking with anger and disbelief.  Max was the center of my universe in his life and in his death.  And, it isn't only that I feel like I am betraying him when I am not exhausted with grief, it's that I feel completely inauthentic to my feelings about his not being here.  Something about that time was a completely pure expression of my core self - which feels empty in his absence.

Mo's presence ushered in a new force - that was and is equally and as completely pure and real - which is total joyfulness. And I feel just as much myself in a fit of laughter now as I did with the covers pulled over my head.  And, I am strangely as comfortable with both expressions of my new self.  Panic, disorder, hopelessness and grief feel just as natural for me as joy, laughter, and love. 

At the core - these emotions are fighting with each other.  The easier road - the path of surrender for me often feels like the side of myself that wants to cry all day every day and shout at the heavens "WHY MY MAX?!!!!!".  The strength that it takes at the start of every single day to focus on the positive doesn't come easy.  I have had to work hard.  Honestly.  It's been such hard work.  But, then I see his smiling face, and I kiss his perfect cheeks and the rest of the day usually falls into a rhythm of joy.  And, even though I am grateful - sometimes I miss the anguish - almost as much as I miss my Max.

Joy!  Brought to us every day by this little person.

Mo is so special

Tired out

#awesomenaptimecoming

First time moms

I am not a first time mom. Mo isn't the first of my babies.  This time around, I didn't consult a bunch of books, I didn't stress about breastfeeding, I don't worry that he is getting every ounce of iron he needs. 

I haven't been doing all of these things this time around, but it isn't because Mo is my second child.  I don't over read, or over worry, or smug-out about how I feed or diaper or which method of mothering I am using because I know that none of it matters.

I know that no matter how much I read, how long I breastfeed, how much food I make at home, what kind of diaper or cleaning product I use - it doesn't make a difference. I was a more "perfect" mother to Max. He didn't watch tv, he ate almost exclusively home made foods and drank almost exclusively breast milk. We used sign language with Max more and I read a whole load of books that told me how to parent, nourish his physical and emotional health, and prevent SiDS. 

I just do what feels right now... Because I want to enjoy every moment and not stress. I want Mo's life to be fun and happy and maybe I should care more about milestones and parenting techniques. It isn't because Mo is my second child. It's because no matter how perfect I was with Max, it didn't save his life. He died despite all of my attempted perfection. Now I know how little that all matters. In fact I know that none of it matters.  That's why I parent differently than you and maybe I even feel a little smug about that.

Loss

I've spent hundreds of hours since losing Max trying to figure out how I am going to live with this for the rest of my life.  I've exhausted myself with reading and meditating and talking and trying to come up with a plan that could ever make me feel worthy of continuing to live in a world without my son.

Well meaning people have given me many suggestions, many of these I have come up with myself: 
Have more children!
Move - go someplace new and explore!
Find the meaning in the loss and then make a difference in the world!
Remember the love that you shared with Max and then seek opportunities to invite love like that back into your life!

These suggestions all sort of make sense when I am the focus of the loss.  But, I am not the focus of the loss - Max is.  He is the one who really lost.  He lost his life.  What I am having trouble living with is that he is not living.  It nearly kills me every minute of every day that my heart feels so empty without him - but what kills me even more is how selfish that feels.  What is painful is not just that I lost Max from my life - it is that Max lost his life.  And frankly, I'm not sure how this point keeps getting missed.  The empty feeling I have because Max is dead is not just about me not getting to see my baby grow up - it's about his not getting to grow up. That is the real loss.  How is that not plain as day?  

You see - no matter how many children I have, or how many exotic places I travel to or live, or how much money I raise for charity or how much more love I invite into my life - Maxie will never have these things and THAT is what I cannot reconcile.

I have already found things in my life to be happy about - I already enjoy Mo, Ted, Jake and Layla, traveling, my work, my friends.......But living with the shocking truth that my son will never have these things, that he lived and experienced so very little - I just don't know how to do that. He is what is most important!  He is what is most lost!  HIM and not ME!

Expressive

Mo's not talking. He really doesn't have any words. He sometimes sort of says "Momma", but really nothing else. He is really good at animal noises.  He is almost twenty months old. The pediatrician was concerned and so we had his hearing tested. His hearing is fine. The next step is to take him to a speech therapist.

Here's the thing though- I'm not that worried. Perhaps I should be, but I'm not. He is very expressive. He is very "verbal", even if the words he says are made up. Ted likes to say, "If this were a language, Mo would be fluent."  When he is hungry, he pulls out his high chair. When he is tired, he rubs his eyes. When he is happy he screams (which he did over and over and over when I got back from Israel - much to my delight!). 

I recognize that I can't just ignore that he isn't talking, so we will get it checked out. I'm just saying - I feel pretty convinced that he'll be catching up soon.

Making friends

Just because I have sought out new friendships doesn't mean that I think it's the answer for all grievers. The first years were so hard for me and it added to my grief tremendously that my loved ones weren't all accepting of how deep my grief ran. I often felt that there was nobody who I could safely be sad around. It is still a constant challenge for me, but, as I explained yesterday, having new people around who accept this new version of me has been validating and liberating for me.

Ted is really the friendlier one of the two of us. He is outgoing and jokey and generally much more open.  Sometimes he teases me about all of the new friends I've made "Look at you!", he says, "Makin' new friends!!!"  We both know how unlikely it would have seemed to both of us a couple of years back. Since losing Max, Ted feels the opposite really. It isn't that he is against new people, he just has no interest in seeking them out.  He's much more interested in just sticking with what we know. It feels safer to him, which makes complete sense to me. He's still the more sociable one of our pair, he'd just rather stay in his comfort zone for now. 

When I was newly bereaved, I was searching for the answers about how to do "this" and I felt frustrated all of the time that there seemed to be no set plan for me to follow. What I've learned is that there really, really is none and that often I just feel like I am flailing around with no structure to help me keep all of this grief together.  But, the fact is that we all do what helps us survive best and we just have to trust that with time, the path we need to follow will become more clear. It feels like it's been taking a long time for me to figure out how I am going to do this - but the truth is that I'm still so early on this path. We've really only just lost him.  He was here only a moment ago. His absence is still the most obvious thing in both of our lives all of the time. Be patient with yourself, and if you need a new friend, give me a call.

New Friends

I have made a lot of new friends since losing Maxie.  It is surprising to me because in many ways, I often feel totally unfamiliar with myself most of the time.  I am slowly recognizing myself as someone who lost a child - someone for whom "grief" is a large part of my new identity.  And yet, I've made new friends - funny, compassionate, interesting, outgoing, wonderful new friends.  If you had asked me in the first year after losing Maxie, I would have thought it impossible.

The truth is that in many ways, I am more comfortable with some of my new friends than many of my old ones.  They didn't know me before I lost Max, so they don't really care that the "old me" is gone.  They aren't waiting around for the old me to come back.  They actually like the new me - a "me" I am only now beginning to like myself.  New friends know that I had a son before Mo named Max and they accept that I talk about him, miss him, and love him.  Most of them even ask me about him and are interested in getting to know him through me.  They are comfortable with who I am - they wouldn't have become new friends with me if I made them uncomfortable.

I am growing to like and even love the person that I am becoming - the one that is emerging as my new normal.  It's nice to know that there are others who like her too. 

Bickering

Ted and I are like any other couple in that we sometimes bicker.  We bicker about incredibly stupid stuff - stuff that doesn't matter at all.  I don't think we are more special than other couples or immune from having these kinds of spats but, having gone through what we've been through, I expect more from us.  It should be glaringly obvious to us what the small stuff is and what really matters.  We should be more delicate with each others feelings, knowing the emotional hell that dwells just below the surface in both of us. 

We are both guilty of it. 

I believe that what Ted and I have is special, made more precious by the shared loss of our baby boy.  We should be more careful with each other.  We should stop dwelling on meaningless nonsense.  None of it matters.  All that matters is our family, Mo, and our memories of Maxie. 

I missed him more

While I was in Israel, I actually missed Max more than I missed Mo. It was hard for me to understand why and I did miss Mo like crazy - it's just that I missed Max more.  

You see - it was the first time that I'd really been away from my safety net - a net that includes Ted, our home (Maxie's home), our photos,  I could talk to Mo, or FaceTime with him, or get updates about how he was doing. The team taking care of him sent me photos and videos. I knew how he was. I could connect with him in real time.

I was thinking about and missing both of my kids but only getting updates about one. The discrepancy between living and not living was glaring and profound. And, so, I missed Max more. I missed him so much- like I always do. I thought about him so much- like I always do.  I don't know - it isn't that I love him more - I love then equally - it's just that somehow I missed him more.

Purim Carnival

Today has been crazy. Our nanny is at a child development class and I've been trying to balance work and Mo all day. We did manage to sneak out for less than an hour to the synagogues Purim Carnival (a Jewish holiday where kids wear costumes to celebrate Queen Esther's saving the Jewish people from the evil court advisor Haman). Luckily, Mo's Halloween pumpkin costume still fits. Most of the stuff they had there was geared towards nursery school kids, which is still a little advanced for him (games, face painting, coloring masks).  He had fun but got tired out real quick! 

Sometimes he is a very serious boy!

More in common than you think

You and I have more in common than you think.

I would also like to avoid sad things.

Death also makes me very uncomfortable, confused, and depressed.

I also have no idea what to say most of the time.  I also worry about saying the wrong thing.

This is also my first time in a situation like this.

You were blindsided when I told you that I'd lost my son.  I was blindsided when I lost him.

I was also a very worried parent. Losing a child was and is also my biggest fear.

This is the one major difference - I don't get to choose to not deal with Maxie's death or the people who were most affected by it.  You do.

You can choose to avoid me.

You can choose to tell me that I should be over it by now or that at least I can have other children.

You can choose to ignore that my heart is broken without Max or to pretend that everything is right in the world.

Or, you can choose to be a friend - treat me as an equal - to have fun with me, laugh with me, continue to make plans with me, and help me to memorialize my beautiful son.

You and I have more in common than you think.  This is really scary for both of us.

Coming up for air

I've been down, down, down, down, down.  For some reason, I can't get the some of the icky things people said to me while I was abroad out of my head.  There were way more nice things said to me than awful - but the awful stuff sticks.  I hate it.  I keep going over the these icky things over and over again.  Ted tells me to let them go - and I would like to - but they just keep popping up.  I don't understand why certain people's instinct is to shame me when they hear Maxie's story.

The other thing that I can't seem to stop thinking is this: If the purpose of life is the pursuit of happiness, what does that mean for Ted and I?  A large part of me will always be unhappy.  I feel unsettled and incomplete every hour of every single day.  Nearly every hour of every day, I go over and over and over and over the moments of the day Max stopped breathing.  The vision of Max in the Intensive Care Unit, hooked up to machines, eyes closed, breathing only because a machine was doing the breathing for him...it takes my breath away.  How can I ever be happy with this vision in my brain?  How?

And just when I think that the whole thing is going to swallow me alive.....

Just now - another bereaved mother that I some spent some time (too little) with last week in Israel - called me.  She reached out across the ocean to check in on me.  She wanted to tell me that she knows how I feel - because she does.  And, I am so so sorry that she actually knows how I feel but it feels so grounding to talk to someone who knows.  I told her that I read an article online about her son which said that his favorite book had been Goodnight Moon - something I hadn't known about him - something that I believe connects our boys up in heaven.  I cried (am still crying) to her about my broken heart, all the while feeling bad about potentially unleashing those feelings in her again (and again, and again).  I've been thinking about her since I left Israel.  It was so nice to hear her voice.

Somehow the key is to hold on to the people that understand and/or who care and wash my hands of those who don't.  I know this - I really do - but I can't seem to really do it consistently.  I wish I could just shut out the noise and insensitivity instead of letting it pierce my heart so intensely.  They really aren't worth my time and there are SO many people who are.  I needed that reminder this morning because I've been drowning.  It was time to come up for some air.

Jet Lag

As we were getting on the plane to Israel, a woman I work with, who has never been to Israel, asked me how I deal with the jet lag from taking this trip.  "I never get jet lag",  I replied.  I realize now that I probably sounded kind of smug.  Anyway - famous last words!

My jet lag is so intense.  I feel like I could probably fall asleep anywhere, at any time.  Yesterday, at my niece's second birthday, I nearly snuck off to take a nap in her room.  My poor husband has been forced to watch 20 minutes segments every night of The Bachelor episode that I missed while gone.  I cannot keep my eyes open to see who accepts a stay in the Fantasy Suite!  (Ted is SUCH a good sport!)

I keep waking up in the morning at my usual time but by 4 pm, I am beyond exhausted.  I am chalking it up to old age - like I do with everything else.  Old age kind of sucks.

Luckier

People always tell me how losing a child is so rare....how it never happens to anyone.  I think I probably thought that too, before losing my own child.  The truth is that it is as rare as any other devastating tragedy.  During my one week trip to Israel, I spent time with four other bereaved parents.  FOUR.  I'd say that is a lot considering how few people I actually interacted with over the course of my one week stay.

The reason you think we don't exist - the reason you think we are so rare - is because we are dwelling in the margins with our loss.  We don't bring it up all of the time - there are other things going on in our lives - we try to keep it quiet so that we don't make you uncomfortable.  We also keep it quiet so that we don't have to get hit in the face with how little you care.  Half the people I traveled with have no idea I lost a child.  I am sure that even less knew about three of the other parents.

We are here.  We are among you.  We don't love our children less than you do....even the ones that are gone. We didn't ask to have these great losses.  Our beautiful children were the unlucky ones.  Sometimes I think people say that these things never happen because what they mean to say is that they don't believe it will ever happen to them.  They believe that they are more special than us somehow.  Maybe I believed that once too, but I don't anymore.  I just believe those who haven't lost are lucky.  Nothing more.  Nothing less.

Israel 2014

It was good to be home....

Sacred Spaces

On the last day of my staff trip to Israel, a small group of friends and colleagues accompanied me to the dedicatory space in the "Offer Forest" in Carmel to dedicate the pillar that stands there in Maxie's memory.  I knew that it would be incredibly hard, but my plan was to remain poised and deliver a few words about my beloved baby before the unveiling of his pillar.

They set up a really nice space - chairs, a table with drinks and cookies and a podium that we could use to speak from.  They dug a hole behind the pillar, where we planted an almond tree together after the ceremony.  The plaque looked beautiful.  The space was serene.  Other than the fact that Ted and Mo were not there - it was "perfect".  But, as soon as we pulled into the spot, it felt far from perfect.  It was anything BUT perfect.  My child should have been at home with his brother, being looked after by his daddy, grandmas and nanny.  I should have been visiting the next stop on our staff itinerary instead of sitting an hour away from them at a memorial site for my son.  I hate that this is the way life is.  I simply hate it.

My boss, Russell, delivered a beautiful speech about friendship, loss, and commitment.  I thought that I would be able to deliver something equally composed and meaningful - but I broke.  I started speaking and then shaking and then crying my eyes out.  The words came out in a jumble.  There was no flow to my thoughts really and I forgot everything I wanted to say.

I was lucky to have friends there who know and love me.  My best friends in Israel are brother and sister: Ofir and Tali.  I am also close with Ofir's wife, Orit, and their parents, Ezzie and Hanna.  They all came to the ceremony along with two Israeli colleague/girlfriends: Yael and Liat.  I knew I didn't want to be alone but also knew that I couldn't have the whole group there.  It would have been too much for me to take.

I left feeling emotionally spent - totally exhausted.  I rejoined the group and was embraced by those who knew where I had been.  It was really really hard.  There is little real satisfaction in the normal sense of the word to doing things in memory of Max.  It feels "right" to memorialize him, because the reality is that he is gone....but it feels more "wrong" that that is our reality.  Of course, it is important to us that this place exists - he deserves sacred spaces on this earth.

It's just that he deserves so much more than that and I really believe that we do too.

Russell and I unveiling Maxie's pillar

Ofir, Tali and I

The Feingolds

My JNF family

Maxie's Forest

Dedication

Today is my last day in Israel. I am ready to go home. I am tired of the schlepping and the bus rides. I'm tired of the stories and the visits. I am ready to go home so I can hug and kiss my baby.  I miss my guys a lot.

Today is a day that I've been dreading a little as well. I will be leaving the group for a little while to meet my friends in Maxie's Forest to dedicate the pillar that was erected in his memory. It's something super special - a driver will come and pick up my boss and I and drive us to the spot where we will meet up with my Israel family (none of whom are blood relatives). We will have snacks and drinks and some time to just be with each other in a beautiful setting - away from the buses and the programs and the noise. But my heart is breaking to be going to a spot that shouldn't exist. A place that could never EVER - no matter how beautiful - come close to filling the spot that Max left  in my heart. The gaping hole that makes every day challenging for me. 

To be here without Mo and Ted is hard. I wish that they were at this dedication today with me. To be here without Max is impossible. I still can't believe I get up every day, get dressed, eat breakfast, work, interact with people, smile, make jokes. It's other worldly. It's unreal. 

To my Max: "The sun still shines when you're not here - but never as bright - never ever the same." You are my whole heart. You are never forgotten. Not even for one minute. I'll love you for an eternity.

Sharing

Yesterday morning was really hard for me. I spent the first hour of the morning crying at the back of the bus. Nobody saw me. I was really quiet. I was having a private moment as best I could. 

Anyway, an Israeli colleague, who I don't know well, has been traveling with us. She brought along her husband and baby. I'm not sure how old the baby is but I'd say she's about eight months. This colleague came to the back of the bus to nurse her child and found me crying. 

When she was done nursing, she turned around and climbed next to me with the baby. She asked if everything was ok and I told her I was fine. She looked really concerned and asked if she and the baby could do anything for me. She then started babbling with baby, thinking that perhaps just being in the presence of her cute baby would cheer me up. How could I tell her that the baby could not cheer me up. Mostly I was looking at her thinking, "I was once like you."  "Did someone say something to hurt your feelings?", she asked me - heartfeltly.

I am not sure why I decide to tell some people and not others. Sometimes I make the right decision and other times I bomb, making myself feel worse. She has kind eyes though and is a mother and seems earthy and real. So, I told her about Max - something I regret. She didn't deserve to hear about him. And, she wasn't ready for it.

I swear I think if I had said that yes, someone had said something to hurt my feelings, she would have been more empathetic. When I told her that my child died, her face remained stone-like and she decided to share her thoughts about life and death, which were basically platitudinous. She believes everyone has their time and his soul was finished and so on and so forth - all the while making googley eyes with her own living, breathing child. I just nodded. I thought the speech would never end. According to her, my child's death was just meant to be. Easy for her to say.

The day before, I sat with the young head of our IT department and told him about Max and found a completely empathetic, sweet, and non judgmental soul. Yes, he's a father, but he never even brought up his kids. He just listened and agreed that life is so hard. He shared some hard stories of his own, but never compared our losses.  He wasn't afraid. He didn't try to fix me. 

It can be strange finding out who has it in them to be a friend and who really doesn't.

There have been a few incidents like the first one I described. One mother on my bus actually got annoyed with me for telling her about Max because she was trying to listen to someone else who was playing a game at the front of the bus. She apologized later for not being able to listen to me with a stone cold poker face.  Later she cried her eyes out while watching a film about special needs kids.  It doesn't add up.

Another bereaved parent on my bus says he never shares his son with anyone ever. (Yes, there are two of us on this trip! It's mind boggling). His son is much too precious and he doesn't want to be the topic of anyone's gossipy talk. I am often the opposite, wanting to share with everyone, because I feel completely inauthentic without talking about Max. His brief life defines, in large part, who I am today - just as my colleague's living baby seems to define her similarly.

The thing is - I decided not to let it get to me. There is a reason I keep Max close to me and don't share him with everyone. They don't always deserve to hear his story and I need to protect myself as well. It's a learning process for sure. I am an open book kind of person. I always have been. But, that is when my life was uncomplicated. My expectations are low. I'm easily impressed. The ones who listen and care make an impact. The ones who don't are fine - I politely smile at their response and remind myself not to share with them in the future.

My most important prayer

There is nothing like traveling around Israel on a bus full of people. Up every morning by 7 (at the latest) driving from site to site all day, spending time bonding into the wee hours and then up and at it again the next day. It's where my personal and professional feel most at peace with each other - it's the reason that I do what I do. It makes every other part of my job worth it.

Israel is somehow part of the fiber of my being - the good, the bad, the ugly. I love her like you love a person - flaws and all. Today we head to Jerusalem - a sacred city where you can actually feel the footsteps of history: King David, Solomon and even Jesus feel present, their spirits whispering by, brushing your shoulders on their way past you. The air feels more holy, or at least a whole lot more interesting. 

Tonight I will be at the Western Wall - the only remaining retaining wall of the biblical temples. According to Jewish tradition, it's the closest place to god that we can get on earth. That's pretty powerful. 

I have to put my grudge aside - because, if I'm honest, I haven't forgiven god for allowing Maxie's death. I have prayers that I still want answered - I've gotta try to keep god on my good side or win him over if I need to.  I still believe that there can be happiness. 

I am going to spend some time praying at the wall, as I've done many times in the past.  This time my prayers will be much different.  I'll be asking for more children, for happiness and health for the people I care about most.  What will be most important tonight, to me, will be my prayer to god to take good care of Maxie for me until I can get there to take care of him again myself.