A legend and a legacy

I've written about my friends Doron and Didi Almog several times. They are amazing people who I've known for nearly seven years now. Their son Eran, who was born with severe developmental disabilities, died suddenly 7 years ago at the age of 23. It's hard for me to imagine, knowing what I know now, that they were so early in their grief when I met them. They were and are amazing people.

General Almog was the first person on the ground in Entebbe in 1976 - part of a clandestine mission to rescue 108 hostages whose plane had been hijacked and who were being help captive in Uganda. He was the commander of that mission and is a celebrated hero in Israel.  He felt led by his deeply rooted commitment to never leaving a wounded soldier in the field. Several years earlier, during the Yom Kippur war, Doron's brother was left bleeding on the battlefield for days. He was returned to his family already dead. The hostages were to him the wounded soldiers. He would not leave then behind.  He is a national hero in Israel. One of the most celebrated.

When Eran was born, he felt the same. He and his wife knew that they would never leave him behind.  Their commitment was to give him a beautiful life, to make sure that he could experience everything to the fullest in a way that matched his needs and abilities. He and his wife recognized right away that there was a stigma. That the other parents would proudly brag about their children. "Of course their children were great!", Doron said, because they belonged to their parents!  Their children were considered an extension of their parent's own greatness. There is ego in the pride. But what do the parents of a severely developmentally disabled child have to brag about? Eran could not feed himself, or go to the bathroom by himself, or even say one word - "not even Aba (father)". But the love a parent feels for their child is unconditional. Those things should not matter. "These children are the most innocent in society - full of love. They cannot be left behind."  Doron set about building a village that would accommodate special needs young people and adults - not a sterile institution but a community with green grass, shaded areas to relax, a multitude of special therapies (pet therapy, equine therapy, art therapy, music therapy, hydrotherapy). The place is called Aleh Negev - a place that they believed Eran would live out the many years of his life.  But that dream would never be realized.  Eran died suddenly and unexpectedly as a young man. People talk about Doron's son who was developmentally disabled a lot in my organization, but they nearly never speak about the fact that he's been left grieving - a bereaved parent to a special needs child.  

"To rescue 108 people who were he captive for several days - what is that?", he said. "My life's work is to help those who are prisoners in their own bodies every day of the lives."

When I first met them, I was driving around with Doron's wife and I told her how wonderful I thought it was that she was raising money for this important village. She set me straight, crying in my car and said, " I hate that we are traveling all over the world raising money for a village my son won't ever live in". At the time, I could only see the good that there were doing. I stupidly figured they'd made sense of the loss when they were actually writhing in pain. 

We met Doron on Thursday in Aleh Negev. We heard him speak. We visited the pool, where residents were loudly playing with gigantic smiles on their faces. We visited the wind chime garden and the petting zoo and the playground built for children of all needs.  I had some time to visit with Doron on my own and cried and cried about the unfairness of life - him missing Eran, me missing Max - us longing for our children.  He comforted me with his compassion, his knowing eyes and his embrace. "It's so hard", he kept saying. I asked him how he standed being in the swimming pool area, Erans favorite activity - the one that the two of them enjoyed most together. He just said that his wife can't go there. "It's too much", he said.  I know "too much". For sure. I know it well. He showed me photos of his three grandchildren and I showed him photos of Mo. 

When I feel like I can't move forward, like I want to lay down and die - there are certain people I think about. Doron and Didi are two of those people. Their struggle, their pain, their triumphs, joys, and accomplishments give me strength. I am beyond honored to call them my friends. I feel beyond grateful to have been able to spend some time with him, here in Israel, in the village that is his son's legacy.

A temporary peace

If you are my Facebook friend, you already know that I am enjoying my favorite breakfast! 

Delicious!

I made a conscious decision my first day here to forgive. There were people in this group who have added to my pain over the past couple of years by ignoring my loss, ignoring me, saying things that hurt me. But, I decided that to forgive on this trip would be easier than focusing on those feelings. I'm here, stuck on a bus for a week, with really long days. I want to enjoy it. Being angry keeps me stuck. Forgiving sets me free. It is a process.  So, I told one of my former work buddies on our first night here that I forgave him, & that I know he did his best. I don't actually know that, but I'm giving him the benefit of the doubt and I feel lighter. 

Most of the people on this trip have no idea what my story is...and that is fine. What they are seeing is the surface, which looks a lot like my old self- joking around, hanging out with the late night crowd, and crashing weddings. I can't help but wonder what they'd think of me if they knew. But I really can't worry about it. I know what's in my heart.

Max is with me always. Even when it looks like I'm not thinking about him, I am. I miss him. I wish I could be like the other parents, showing off photos of my boys.  Mostly I've just been avoiding the kids topic.  It's ok. We will get there - or not. Regardless, I have found ways to achieve some temporary peace and it's getting me through. It can be done. 

Wedding Crashers!

First night in Israel!  Off to a good start!

O

Mo's Best Trick

I made this video for myself so that I can watch it whenever I want while I am gone.  He doesn't talk yet BUT he knows all of his favorite animal's sounds:

I'll miss you Bubba!

I love you more than anything!!!!

It's all timing

Mo made a shift this weekend.  It happened so subtly over the last week and then by the weekend, it was done.  I think his Daddy is his favorite now.  I'm trying to not let it hurt my feelings.  Teddy is basking in the glow.  It was bound to happen sooner or later - so right now seems appropriate I guess.  I am leaving tomorrow for Israel for a week.

I am excited about leaving tomorrow.  At the same time, I am worried that when I come back, Mo will have forgotten me - even though I am only going for a week.  At the same time, I am glad that he is in such a daddy stage.  It would be much harder for him if he was still "all about mommy".  I am going to miss him so much - the longest I've been away from him is one night.

Going away for a week is totally no big deal.  I've traveled all over the place and stayed away for weeks, even months, at a time.  Still, I've never left my little ones really and I worry about the worst case scenarios.  I've actually been a little more worried about me than Mo, since I know Mo will be in good hands.  Going to Israel is super safe - and I tell people that all of the time - but sometimes it isn't.  That is just a fact.  I'm not afraid of what could happen to me, for me - I am worried about what could happen to me, because I worry about Ted and Mo.

Anyway, I've over thought it.  What else is new?  While I am gone - I know Teddy and Mo will be doing some extra big bonding - and I will be thinking about them all of the time.  I can't wait until it's over and we are all back together again!

Patient Beware

I worked with an alternative therapist off and on for a couple of years before Max was born.  She is really good at what she does - she helped me with a few issues that felt big in my life - being bullied in a business partnership, a major job decision, and the looming uncertainty of whether Ted would ultimately be "the one".  These were things that I was really ruminating and obsessing over and she helped me to calm my mind down.

I happened to have been in her office earlier in the afternoon on the day that I found out I was pregnant with Max.  That was the last time I had seen her until he died.  Another patient of hers is a friend of mine and by the time I called the therapist (a couple of weeks after losing him), she had already heard the news.  She told me that she was so glad I got in touch and that she really felt she could help me.  I felt hopeful.  It was early.  I don't know what I was expecting, but I did feel like if anyone could help me, it would probably be her.  In the same conversation, she told me that since the last time I'd seen her, her prices had gone way up - that instead of charging $150 (or in that range) a session, she was now charging over $400.  But, considering my circumstances she'd let me have the old pricing if I bought a package of six sessions.  I knew I'd probably need at least that many so I didn't really think twice.  Though I did take pause to contemplate the absurdity of charging over $400 a session to others.  But, "good for her" is what I thought.  She IS really good.  I am sure that there are people willing to pay that much.

Of the six sessions I paid for, I only ever had one.  At the beginning of the session, she told me that she had a dream or a vision that Max was reincarnated and was coming back to me.  She told me to focus on that (which I did - until about six months ago - I actually became obsessed with the idea of him being reincarnated).  She also told me she thought having another baby would be a good idea because when her dog died, she was super sad for about a month until she got another dog.  That felt like nails on a chalkboard to me.  It was the first (of MANY) times that someone would compare my child dying to their experience of losing their dog.  I know that for many people their dog is their "baby" - but I don't know any non-elderly person who expects NOT to outlive their dog.  For that, and MANY other reasons, it is not the same.  It just is not the same.

The session I remember was amazing.  She did a guided mediation with me, where I actually reconnected with Max and my grandfather.  They were right there.  I could practically feel my lips on his cheeks.  Just thinking about it now makes my heart hurt.  Looking back I can't explain if it felt so real because there was some realness to it, or if I was just so early in deep, traumatic grief that my mind was playing tricks on me.  I remember telling her afterwards how much I felt that I needed to come back soon.  She reminded me how lucky I was that I had paid for the package since her prices had gone up.   I felt like I needed her to get to him.  She told me to repeat the mantra "My baby is coming back to me".  I did that.

The next session got cancelled and I can't actually remember who cancelled.  I want to say her because I know I was on pins and needles waiting for it.  Anyway, doesn't matter, it didn't happen.  I wrote her to reschedule and asked if she thought we should try and do the same thing again or if there was something else we should do.  She wrote back to say it was up to me and I should think about it because I only had two sessions left and that her prices had gone up so she couldn't give me the same prices for the next package.  She also seemed to think I'd bought fewer sessions than I had.

At this point - a couple of things.
1) I know that therapist are not our "friends".  They are service providers and we are their clients....BUT....I believe that we want to feel like they care about our well-being.  I hope that the reason that they have chosen to heal others as a profession is because they actually care, even a little, about those people.  Every time she reminded me of her prices, I felt like I didn't matter.  And, by the way, I already deeply felt that I didn't matter.  Without Max - my life made no sense.  She made it clear over and over what a "great deal" I was getting.  Only thing was that in reality, I had pretty much just gotten the worst deal life could have dealt. I don't have the words to exactly articulate this feeling but there was a GIGANTIC disconnect.

2) I felt VERY vulnerable.  She had connected me to my son (whether real or imagined - it didn't really matter).  I suddenly felt completely dependent on her.  It was clear that she was ready for me to be done with this "discount" package of sessions she'd sold me.  I knew that she knew how vulnerable I was and wondered if she was just hoping that I had lost track of our sessions.  When I look back now, I really believe that she had just lost track.   But, I don't think that I was important to her at all and it hurt my feelings that she simply didn't remember that she'd only seen me once.

I wrote her back and said something like, "I am very deep in grief but I am still keeping track of appointments and payments."  Then, I sent her the dates of the first appointment and the one that had been cancelled.  I also sent her a bank statement (or a cashed check or credit card statement - I can't remember) showing her that I had, in fact, paid for six sessions (or, as the case actually was - I paid for five and she used to give the sixth one free).  I wish I'd saved her response to that.  She told me that she felt my tone was aggressive and I was not invited to come back to see her and that she would not be refunding my money.  Just like that.

This experience has stayed with me for many reasons.  It was incredibly hurtful.  I felt taken advantage of, ashamed, and vulnerable.  I wished that I hadn't felt so anxious to prove to her that she was wrong.  If I had been in my right mind, I would have simply thought that is was kind of annoying that she kept reminding me of her prices and then chosen my words better in reminding her that we had only met once.  But, I wasn't in my right mind.  When she decided not to see me anymore, I felt like my only hope for connecting with Max had just been taken from me.  To her, it was a business decision...but for me, it was as if she was taking Max away from me again.  If I am really honest with you, I have to say that it made me really contemplate taking my own life.  It was a thought that kept coming to me anyway and this split had nearly put me over the edge.  I hated myself for getting angry with her and I hated her more for not caring enough to put the business aside and show me compassion - woman to woman, human to human.  In the weeks following this incident, friends started disappearing and I felt like I couldn't even pay someone to care. It was an extremely isolating and traumatizing experience on top of everything else.

There are many kinds of healers out there. Some have licenses, some have certification, some have neither.  Sometimes skilled healers develop a little bit of a god complex - because we put them on a pedestal. We put them there because we believe that they have the keys to save our lives.  They are then in a position of power over us that can be very very scary.  Since this initial experience, I have had many disappointing experiences with "healers" - people who probably were prepared to work with someone with boyfriend or body image issues but not with someone who was in extreme grief and experiencing PTSD.  I have made sure not to give that power to anyone along the way.  I have also worked with people who have made a huge difference in my life. Ted and I saw a grief counselor once a week for about a year who was wonderful, compassionate beyond words. She left her ego at the door and just listened to us. I believe that she helped us to reframe so much initial hurt and also helped to protect and keep our marriage feeling safe. She even let me express anger, sometimes at her, however irrational. Like I said, the ego was checked.  I am so grateful for her presence in my life.

I tell you this story to encourage you to beware. When your life hangs in the balance, the healers you choose have more impact on your well being than you know. Do your best to find someone that specializes in your needs. Many many many unsuccessful healers have felt that they could help me but I believe that their desire to "help" me was more for their needs than mine - for their business, their experience of "working with people in grief", or their egos. The only ones who have been able to help at all are the ones who have put healing me ahead of their own needs. I hope that you find the right healers on your path and that you manage to avoid the other ones as best as you can.

Hot Spot

Jakey has a bad hot spot on his butt that he keeps licking and biting. Every time I put medicine on it, he just licks and bites it right off.

Desperate times:

I told my nanny if she found a pair of my underwear with a hole cut out in the butt - to please not freak out!

Good thing "grannies panties" aren't in short supply in these parts.

Camille

I kind of can't believe that I am sitting here writing another eulogy for one of my mom's beloved dogs.  When Camille came home to my mother, something wasn't quite right.  She was skittish and cold (though regal and lovely).  She was especially afraid of men and never came when called.  I can remember many many nights of house sitting when I just could not get her in the house.  The more I called for her, the further she'd back up.  I'd have to leave the sliding glass door ajar, watch tv or read a book, and pretend not to notice her.  That is the only way she'd come back in the house and I couldn't leave her outside because I worried about the coyotes. There are A LOT in my mom's neighborhood and they howl in packs all night long.

As the years went by, she got sweeter and more friendly.  The change happened so gradually, you wouldn't have noticed day to day or month to month - but year to year, she became an entirely different dog.  She totally lost her fear of men - which we all attribute to her having the NICEST men in her life: my brother, Ted, and Ken.  I know that she and Ken had a special bond.  She had become the sweetest, most cuddly and loving dog.  She became this way because she was SO loved.

On Monday night, Camille passed away in Ken's arms.  He held her for the last hour of her life.  My mom was out of town at a conference.  She is grateful that Camille wasn't alone.

I don't think the death of a dog is the same as the death of a human - and certainly not a baby.  I'm not writing about Camille in this space to equate the two.  But, our dogs are important parts of our family and in the space that Maxie left, they helped fill our empty hearts.  In the time since Maxie died, my mom has lost three of her dogs.  It's all just too much.

Our Camille was a sweet and funny girl and she will be missed. 

My mom is always happiest with her dogs. Camille always liked to be right next to her Momma.  She is on the left of my mom.  Ben is on the left of Camille, and Stella (who died shortly after Max) is on the right.  They are all gone now and sorely missed. 

Cottage Cheese

There is something that I am almost as excited about as my plane ride to Israel next week - it is Israeli cottage cheese.  It's crazy good.  Like, CRAZEE good!  I kind of can't stop thinking about it.  It's creamy and thick and so delicious.  Honestly, there aren't words in the English language to describe Israeli dairy.  I am not sure what we are doing with milk products here in the US but they don't even compare.....at all.  

Someone told me recently that Tnuva (the cottage cheese company in Israel) was selling their cottage cheese here in the States and I did just find this link: http://www.tnuva.com/ that has a "store locator" tool.  Apparently, my local Albertson's actually sells Israeli cottage cheese.  If this is true - it is like a dream come true.  Before you use the locator and run out to buy (and perhaps try) Israeli cottage cheese, wait for me to tell you what I find.  I have a sneaky suspicion that it just won't be as good - something about Israeli cows perhaps.... (or the dairy pasteurization process - not sure).

It probably sounds weird for me to be getting all slap-happy over something that most of us think of as an 80s diet food, but I am telling you - FORGET ABOUT IT!  So good.  My favorite way to eat it is with a breakfast salad (another weird Israeli thing that I cannot wait for!).  

So, if you were wondering whether I was getting excited for my trip to Israel next week - the answer is yes!  I've got a 14 hour flight and a week's worth of cottage cheese waiting for me - what is there to not be excited about!?

This picture is literally making me hungry!

The Evolution of Me

I am not an evolved person.  I am SUPER regular (and unevolved).  I always have been.  I gossip and talk smack and like to tease the people I love (they don't always love it).  I am far, far, far, far, far from perfect.....like most people.

When Maxie died (and still today) there was (and is) a pressure to be suddenly evolved.  I felt that people looked at me, hoping that I  would be more understanding of the difficulty they had in dealing with the death of my son - afterall, it was too hard (for them).  I was expected to easily forgive people for saying words that hurt me, to understand that this death was random and that we just happened to be the unlucky ones.  I was expected to be suddenly evolved.  Our role (and perhaps this was completely imagined), was to make sure that nobody would feel bogged down by our loss, to put on a brave face, to be a perfect grieving couple - loving and supportive of each other at all times, to make something good out of Maxie's death.  This was and is a LOT of pressure.  It is not something that I have been able to live up to.  Ted does a better job than me...but it is hard for him too.

Sometimes the responses that I have to the things that happen around me are not what I want them to be and I am actually ashamed of my reactions.  I get jealous, I feel raw, I cannot handle things that I want to be able handle.  I want to be there for friends who are going through hard times - I do - and I try so hard - I promise, but then every once in a while I get jealous that my hard time is SO MUCH harder (and maybe it just FEELS so much harder because it is happening to me).  When that happens, I hate myself for feeling that way and I try to remember what our grief counselor always said, "To compare is to despair".  It is something that I will likely be repeating to myself for life.  I also want to be there for friends going through wonderful things - and then every once in a while I feel jealous of all of their hope and happiness - I remember what it was like to be embarking on a new stage of life and never thinking that it would all come crashing down.  I envy that feeling - that there would be a "happily ever after" for me.  My biggest challenge in life these days is realizing that there won't be.  

What I mean to say here is that however flawed I started - I am just as flawed (or more) today. Sure, there are pieces of me that I like better today...but not many.  I am working on transcending these feelings but I am also working on keeping my grief in check, getting through each day, being a good mother, having another child, keeping my job, losing this baby weight already!  Sometimes it all just feels like too much.  I guess what I am asking is for you to keep your expectations in check.  I cannot be the person who models  getting through personal tragedy because I am not through it.  I am still very much in it and it is hard.  Still.

Mo's First Swim Lesson

It was on Sunday. He did great! So did his daddy!

Conflicted

I've been feeling very conflicting lately about my blog. I fear that by writing about our experience and our profound sense of loss and horror, that I've somehow cheapened the experience or commoditized Maxie's brief life. I worry that I somehow threw Maxie's death into a bucket with all of the other disappointing and upsetting things that happen in life, where I meant to set it apart. What I've meant to say is that Maxie's life was more precious to me than even my own and that any thing that could ever happen to ME would pale in comparison to what happened to HIM.

My life's disappointments before and since losing Maxie don't add up to even a small pile compared to the mountain that is his loss of life. They are the things that happen to us all because sadly, life is messy. What happened to our lives the day that Maxie stopped breathing goes so far beyond "messy".  But, words are inadequate.  Woefully inadequate.

Because there is no explaining & there is no imagining, there is no way to verbally elevate the loss of our son to the degree at which it stands - "outshining" all of the awful and horrific happenings I could have ever imagined happening to me, anyone I love, or to the little boy - the person - who meant more to us than anyone ever had before.  I feel almost embarrassed that I've even tried to explain it and I am not really sure what to do moving forward.

At Once

There is a theme of questioning that keeps coming back, which almost sounds like an accusation, even though I don't think it is meant to be.  It's "Have you allowed yourself to really love and attach to Mo?"  It seems like a crazy question to me but I get asked this all of the time - almost always by people who've never really seen me with Mo.   I guess when people hear me crying and feeling so helpless and destroyed by Maxie's death, they assume that means I must not have enough love leftover for Mo.  I'm pretty sure that if Max were alive, nobody would ask me that question. 

I know plenty of people with more than one child, and somehow, they manage to love them all.  They can actually go through periods of being a little more worried about one child, or attending to the health of another - but nobody ever bothers to wonder whether they have enough space for all of the children.  There is no question because we know that it is biological and completely normal for a parent to love each of their children with equal passion and enthusiasm.  There is no question because we can see them loving their children equally.  If you saw me with Mo, I don't think there would be a question.  I love him completely - with my entire soul - with every cell in my body.  He acts like a child who is given boatloads of love too.  I never worry that he doesn't feel our love.

What is funny is when I really button up, when I focus all of my attention on Mo and put thoughts of Max out of my mind, I get, "Have you allowed yourself to grieve?".  As if I am somehow emotionless because I am not crying right then.  It's actually a somewhat hilarious conundrum.  If I am not sharing and crying all of the time - I am cold.....if I am sharing and crying - I am stuck. 

I know, better than most, how possible it is to be fully sad and disappointed by life and at the very same time - in the exact same moment, in fact - feel completely filled with joy.  It is hard to imagine.  I know.  I hope you never ever feel it.  But, when I cry about Max...  When I talk about how much I miss him...  When I sob over my broken heart and his beautiful life that ended much too quickly - it doesn't mean that I've forgotten the perfect, hilarious, smart, interested, lovely little boy that is his little brother.  He is the light of my life - the one I am able to give my whole heart to - the most special person in my world. 

Don't worry - Mo is loved.  Completely and thoroughly. As is Maxie.  Forever and ongoing.  To the Moon and back....and back...and back. 

Escape

I wish there was someplace I could go to escape - from people, from life, from all of the noise.  I would take Mo and Ted and leave everyone else behind.  I think about it all of the time. All of the time.

But there is nowhere to go because most of the noise is in my head and the place I envision isn't even on earth. I sometimes think I can get there through meditation, but being alone with myself usually makes the thoughts louder. Then I think what I really need is distraction, but there is no distraction and inevitably I come back to myself.

I'm tired- and I'm ready for something mind blowingly GOOD! Good like Max! Good like Mo. I am tired of feeling sorry for myself.  Tired of all of this noise.

Flight Time

While I am looking forward to my trip to Israel in a couple of weeks, the stuff that I am most excited about isn't necessarily what you might think it is.  It isn't being in the holy city of Jerusalem, or spending a beautiful Shabbat day in the coastal resort town of Eilat.  It isn't even enjoying my FAVORITE breakfast of all time - Israeli cottage cheese and a big salad.  Almost everything I am most looking forward to will actually happen on the plane on the way there.  I kind of can't believe that I'm even saying (or thinking this).

I think that the flight is around 14 hours direct.  That means 14 hours of "me" time (plus extra time in the airport before my flight).  I will be able to watch movies, listen to music, sleep and read whatever I want.  (And, yes, I will be sitting in coach).  Flying lately means having a baby on my lap, who is bored and fussing when I am lucky; crying and screaming when I am not.  There is no reading (HA) or listening to music (the headphones would be pulled out of my ears in two seconds) or watching tv/movies (same).  Since it is an international flight - I might even have a couple of drinks - and I don't even necessarily mean alcoholic ones - I just mean drinks that won't get spilled in my lap.

The truth is that I am not even complaining about flying with a baby.  I am so lucky to have Mo.  He can scream and cry and flail all over the place.  I'll still cover his cheeks in kisses and throw dirty looks at anyone who complains about him.  I am not excited AT ALL about being away from Mosie for a whole week.  The thought is actually totally anxiety provoking - but I plan to enjoy the pants off those first 14 + hours.

Mo's first pony ride

After brunch on Saturday, we took Mosie to the pony rides.  This is something that I have been look forward to doing with my children since Maxie was born.  Doing stuff like this with Mo lifts my heart out of the darkness.  He is so special.

More than enough

After I did a bunch of crying yesterday morning - I decided I needed to get out of the house, so we went to brunch.  Have you been to Messhall in Los Feliz? BEST concept for a restaurant ever (but I REALLY love camp!)

Anyway, I realized something once I got outside.  If we never had another kid, that would be ok.  We've had the most wonderful two children that anyone could ever ask for.  My heart has been filled to the brim with love and adoration.  It's fine.  It honestly is.  Would I like another?  Yes.  For sure.  But, I could cuddle with Mo and give him and Max all of my attention for the rest of my life - and that would be enough.  It would be.

There is a cruel joke that nature plays on women who are trying to conceive by making them the most hormonal that they are all month on the same exact day that they are anticipating something that they've likely been hoping for for most of their life.

The love I have for Ted, Max, and Mo is more than enough.  I know I am lucky to have had Maxie....so lucky.  I am blessed to have Ted and Mo.  

Trying

After Mo was conceived, my family liked to say that Ted & I only had to look at each other to get pregnant.  Mo was my third pregnancy that happened on the first try.  Nevermind that my eldest child had died and my second pregnancy miscarried at eight weeks....at least we all knew I could get pregnant .

In the past year, I've probably taken 20-30 prematurely hopeful pregnancy tests. I've carefully monitored all of my cycles. I've spent hours lying on an acupuncture table with needles all over my body. I'm started to feel pretty hopeless.  Maybe Mo doesn't need a little brother or sister and perhaps it wouldn't hurt so bad if he didn't already have a big brother that he will never meet.  When Max was alive, I honestly felt fine with the idea that he could be our only.  I know I wanted 2-3 kids but wasn't going to fight Mother Nature if that's not what I was given.  I felt lucky to have had the one.  Now, I have some strange notion that I can keep moving forward and planning for the life I originally wanted but no matter how hard I try, I keep getting knocked down. Maybe the universe is trying to tell me something (maybe? I can't even believe that a smidgen of me is still holding out hope).  I just really thought this was the month (as I do every month) and next month, I'll be in Israel while I'm ovulating, so there goes another month.  I'm about ready to throw in the towel.  It's just not happening. And I'm so tired of being sad about it.

Imagining

I'm still thinking about this.  I have a hard time with the phrase, "I can't even imagine" or "I won't even pretend to understand what you are going through".  Let me rephrase - I don't always have a hard time with it.  But, I don't like when that sentiment is followed with prescriptive advice or a brushing away of what I am going through.  Like a "I won't pretend to know what you are going through but one thing I've learned in this life is to keep putting one foot in front of the other."  If they haven't lost a child, they really have no idea what they are talking about.  I guess it would make me madder if they said, "I know exactly what you mean.....my (you name it: pet, grandpa, friend, ??? - but not a child) died too". (Another "can't win situation" brought to you by Abby Leviss and grievers across the world). 

I think what people mean is (because I've said it and this is what I mean):
I can't even imagine anything more horrible than what you are going through.  Or, perhaps - what you are going through is too painful to imagine.

Because, here is the thing - you CAN imagine.  When people tell me that they can't imagine - it effectively shuts them off from trying to imagine what I feel like.  What I'd really like to say sometimes is "Sure you can.  Imagine your three children.  Now imagine one of them dead.  Imagine watching them die in the hospital in front of your face.  Imagine planning their funeral.  Imagine throwing dirt on their coffin.  Then imagine visiting them at the cemetery and spending the rest of your life talking to the sky or the ground when you want to feel close to them.  And, if you can't pick a child to imagine dead, I'll pick one for you - because that is how random it is anyway."  

I don't think that would go over very well.  Can you imagine the uncomfortable situation I would be putting that person in for a whole 30 seconds?  They'd have to imagine their child dead!  How horrific!  Of course, I live with that horror and in that uncomfortable place all day long every day.  So, is it really so horrible for me to ask you to imagine?

Basically, the only way to truly have empathy for another person's situation is to try and imagine it.  There are no short cuts - it's the only way.  The beauty is - you don't actually have to live it.  You are just imagining it.

If we could imagine what it was like to live in rural Africa and have no access to water - If we could imagine what it was like to live a life addicted to drugs - If we could imagine what it was like to be our own "enemies" - If we could imagine being homeless or widowed or orphaned - If we could imagine what it was like to lose our child - We'd be living in a completely different world.  A world with far less judgments, with far more appreciation, with far greater empathy.

No - you will NEVER understand what I am going through and I can appreciate when you acknowledge that .  But maybe you can follow the statement by saying something like, "but I want to understand and so I am listening".  I know you will never understand and for that, I am glad.  Nobody should ever have to lose a child.  I wish I was the one imagining and not the one living it.  But I guess I am just saying that you CAN imagine it.  You CAN. You just choose not to and I can't say I blame you much - who would want to?

Facebook Movie

You know those cute little Facebook movies that were rolled out on Tuesday.  The ones that review your life and all of it's precious moments? 

Ugh

I was feeling ONCE AGAIN like a martian from another planet knowing that something that brings happiness and smiles to other people (or tears of joy) would most likely throw me into a tailspin of grief and have me crying and out of commission for the rest of the day.

But then, my mom called early yesterday morning and said, "I have a question. How come when I click on Erik Feig's movie on Facebook, I see a movie of me?"   Bless her heart.  Hee Hee Hee.  I love you mom!  (Oh mom - please forgive me for throwing you under the bus this time but your question brought such a big smile to my face.)  I explained that clicking on the link would indeed bring her to her own Facebook movie and that if she wanted to watch Erik's, she needed to click the image that looked like a photo collage with an arrow in the middle.  We laughed and laughed.

I also liked what my dad's wife's son's new wife had to say (did you follow that?  My step-sister in law) - "Ok, people, let's be real. The only person that's gonna watch your Facebook movie is YOU (and possibly your grandma)"  HA HA! So true.  For the rest of the morning, every time that I saw someone had posted about their Facebook movie, I suppressed a little giggle.

Finally I succumbed to the pressure (the completely imagined & in my head pressure)  and made my Facebook movie.  That random/not so random collage of photos of the last 6 years of my life (obviously excluding the two years right after losing Maxie) was pretty accurate I have to say.  And, I actually liked watching it all unroll in a beautiful and quick like montage.  

It didn't ruin my day.  It didn't actually do anything to my day at all.  It was just nice to see us looking like a normal family for less than a minute.

Post by Abby Leviss.

On My Terms

You are wondering why I choose not to share Max with people anymore.  And, I don't want to be repetitive because I've explained it before.  It isn't that I am trying to protect anyone.  Or, I should say - I am not trying to protect anyone other than me.  It hurts me to say that my son died out loud.  It literally HURTS.  And, it's easy for you to say "screw them if they can't handle it!".  The truth is that it isn't easy to be the owner of the dark cloud life story.  I want to be liked just like you do.  I want to have easy social encounters and pieces of my life that aren't drenched in pain.  I want to run to the market without having to disclose my most personal information to the random checker making small talk with me (who doesn't really care how many kids I have anyway).  I want to take Mo to Mommy and Me without having to deal with the anxiety of other people.  And not only do I want those things - I deserve those things.  If you know me, you know I am approachable.  It has been really hard making the transition from being a person that people enjoy hanging out with to a person that people avoid.  And, quite honestly, I don't want to share Max because he and I both deserve more.

I share him here....because here I control the conversation (except for when strange bereaved parent-haters "stop by" to pick fights with me).  I get to share with you when I am in the mood to share and I get to keep it light when I choose to keep it light.  When you come here, you know you are going to read the thoughts of a mother who lost her beautiful child (which is probably why not many people come here anymore).  When you meet for the first time at a business meeting or party and ask me how many kids I have - you are expecting a straight forward answer; not the one I give.

Does this make more sense?  I already live day in and day out with the constant noise in my head saying "Did this really happen?  Did my delicious and wonderful baby boy really die?"  I don't like saying it out loud.  There are times when I feel I have to but I don't like it.  And when I feel like saying it - I do.  There ARE times when I feel the need to knock the inappropriate smile right off the face of someone in my life chooses to pretend he never existed.  There are times when I want to shake people who should have been affected by his death and scream in their face, "He was here and you said you loved him!  So why the hell won't you talk about him?"  But, for the most part, I am not looking for that kind of interaction.

I appreciate your acknowledging.  It means a lot when you tell me that you've spent time thinking about us.  I am humbled when you tell me that you still read my blog.  But, we don't really need to get into it if it isn't organic.  I am not usually one to force Max into the conversation anymore.  And I don't like feeling like I am expected to cry with everyone who brings it up to me.  I cry enough.  You can get emotional - and I appreciate that - but I am not cold just because I don't break down with you.  I've worked long and hard to build this wall.  Please respect that.

I cry when I want to cry.  I share when and with those I choose to share with.  The best thing you can do for someone in grief is to let them know you haven't forgotten.  If they want to talk, they will.  If they don't, they will appreciate what you've said (honestly appreciate) and they will leave it there.  We don't always want to talk - we just want to know that we could if we wanted to.

Bottled up

Most of the time, I don't argue about it anymore.  I don't take the time to try and convince.  I just let them think what they want:  That I should be over it, that time will make it go away, that it's ok because I had another baby, that it doesn't really matter because Max was only nine months.  Somehow, they can understand the great joy of having a baby - but they can't understand the great grief of losing one.

As time has worn on, I find that I have shut off more and more.  I don't care what anyone thinks about me anymore and I try not to share my story as much as I would like.  I don't want anyone to fix me.  I don't want anyone to point out the bright side.  I just don't even want to talk about it most of the time.  It's all mine.  This love, this grief, this strange life - belongs to me.

I am sitting here and I can't stop crying because it's all bottled up inside me and I have nowhere but here (this blog) to let it out.  I am expected to keep it to myself - so I mostly do.  Wouldn't it be nice if we someday lived in a world where grievers could come out of the closet?  Where their experience was as legitimate as the experiences of happy people?   I've met a LOT of people in pain over these two and half years and I believe that we deserve a voice.  I hope that I see a day when we have one that can be heard by "regular folk".

In the meantime, I've learned my lesson the hard way.  I shut up and smile, crack occasional jokes, tell stories about pleasant stuff.  I'm hardening to the outside world.  I'm not letting them in.  I am not sure that they deserve to be in here anyway. 

Freezing Time

"They grow up too fast!"

"I wish they would stay this age forever!"

"Babyhood is gone in an instant!"

As one whose baby never made it past nine and a half months, please believe me when I tell you - you don't want the clock to stop right now while they are this perfect age (whatever age that might be).  It is SUCH a blessing that your child continues to grow up at this unbelievable rate! 

The last year and a half of Mo's life has been a blur.  He HAS grown up so fast.  He is so much more of a toddler than a little boy.  And, if there is any part of me that "misses" his being a baby, I've suppressed it.  I am overjoyed that he wakes up every morning looking a little more mature.  I am overjoyed that he wakes up every morning. Period.

I have another baby who will remain nine months forever and it kills me every second of every single day.  I will never know what Max would be like at Mo's age.  I will never send him off the preschool or kindergarten.  He will never graduate grade school, or high school or college.  These are things that you "know" but that I feel deep inside my bones.  These are the things that dwell in the all of the empty spots of my brain and my heart that tell me that each moment of my child's life needs to be appreciated for what it exactly is.  Each period of each of my children's lives has been perfect.

Today Mo is one day older and Max is not.  Today Mo is older than his big brother.  Can someone please explain to me where the justice in that is?

He's growing up so fast and I couldn't be happier about it

See Saw

I can hardly believe what a big boy he is!!!!

The Camel is Back

It's inexplicable.  The onset is both sudden and dramatic.  My palms start sweating and then tingling.  I was suddenly so hot that even blasting the air conditioning directly in my face from all angles could not cool me down.  I felt both dizzy and so nauseous that I worried I might vomit right there.  The worst part is that I was driving North on the 405.  The saving grace was that my friend/colleague, Carly, was in the passenger seat.  I needed to pull off the freeway immediately but the next exit was closed, due to construction.  Then, when we finally got off, there was no side of the road - no place to turn into.  Carly offered to take over but I didn't see how I would even be able to get out of my seat, walk around the car and get into hers.  Eventually, I did get out of the car and Carly drove us home.  Thank god it was her in the car with me.  I haven't had a panic attack like this in over two years - and while this one was nowhere near as bad as the last one - it was still scary.

And, what is so weird, is that there was seemingly no reason for it at all.  Yes, I have been feeling really low these last few days.  And, yes, I had two cups of coffee at our breakfast meeting even though I gave up caffeine (for the most part) a few months ago.  But, there was nothing so dramatic that would have set this off.  We had a really exciting meeting in the morning with a donor of hers.  I was feeling both incredibly jazzed about it and also a little overwhelmed as I have not had a super productive and inspired meeting in like this in a long time and to really make our plan happen will take a lot of work and convincing. But, frankly, I don't think the panic had anything to do with the meeting (more likely the coffee).  I am just trying to piece it all together.

I finally calmed down by breathing very slow and deep.  The relief doesn't come as immediately as I am hoping it will in the moment and it sort of creates more panic because you worry that the breathing won't work and maybe you will be stuck like this for a while.  Then, even after you sort of pull it all back together, the physical trauma of the whole thing lasts for the rest of the day.  It feels like being REALLY hungover or what I imagine it would feel like after getting knocked out.  It's awful.

You try to figure out what went wrong so that you can make sure it doesn't happen again but the truth is that it is likely something so small that you will never be able to pin point it.  It is the straw that breaks the camels back.  It is what comes from carrying around a nightmare in your heart and head all day every day and trying to exist as normally as possible in a completely foreign and frightening world.  It can be nothing more than your body's way of saying - "Enough already!  You need to start breathing deeply and then spend the rest of the day on the couch or you will be punished!"  Panic attacks are completely new to me since losing Max.  I never knew or understood what people were talking about when they said they'd had them.  I wish I still didn't know.

My mother and I in Cairo in 1994