All sorts of stuff

I'll start with a few updates about fundraising for Maxie's Forest.  Our t-shirt project raised $1450, which is a whole lot of moolah!  So, thank you to everyone who bought a t-shirt.  If you for any reason just have not found the time to drop the check in the mail for the t-shirt that we sent you, we are still accepting payments so please don't be shy.  We hope you will wear your Team Maxie shirts with pride!

We are excited about the event on the 15th (http://missingmaxie.blogspot.com/2012/01/weekend-for-maxie.html) and that so many people have already signed up.  There is now an online registration up as well.  I will warn you ahead of time that it is possible that the confirmation you receive after registering will still have the old date.  We hope to fix that within the next day (thanks for pointing it out Courtney). http://www.jnf.org/about-jnf/events/2012/benefit-for-maxie-leviss.html.  So you know, you won't actually receive paper tickets to the event but your name will be on a list when you arrive.  The silent auction will have lots of great items - police ride alongs, several hotel stays and vacation homes (including a week at our home in Costa Rica and a weekend at Aunt Jan's Arrowhead house), unique experiences....I am excited about the donations we have received.  Shawn is working on the talent and has a few great comedians lined up.  It will be a fun night.

Remember that we are looking forward to a whole weekend of activities for Maxie and that there will also be a 5k and a marathon on Saturday the 17th and Sunday the 18th.  We are hoping that a group of people will join us for the 5k on Saturday.  We are planning to walk it (I am going to physical therapy twice a week for my ankle and will hopefully be all good by then).  My two friends, Jess Clements and Ann Frederick, have told me of their plans to run.  Please please let me know if you are planning to join us.  We are setting up a fundraising page this week for those of you who are inclined to use the event to help us raise money for Maxie's Forest as well.  Here is the information about the 5k.  http://www.lamarathon.com/event/la-5k/.  It is $35 to register and you can do it the morning of the event.

In other news - as I mentioned, I am going to physical therapy twice a week.  It is actually nice.  Mostly I lay there while they massage my foot, use the ultrasound on it to break up scar tissue and attach electrodes to stimulate the muscles.  Also, I have to do a few easy exercises.  Then I have to do exercises on my own twice a day.  I am again motivated by Maxie.  The physical therapy we did with him for his stiff little neck worked wonders (http://missingmaxie.blogspot.com/2011/11/maxies-physical-therapy.html).  I hope to make the kind of progress he did.  Yesterday the therapist was a new guy and he asked me how I hurt myself.  I told him that I ran a long distance in flip flops.  I told the same thing to the first therapist I had left it at that.  This guy started laughing and heckling me though.  So I said that I was actually at the hospital and needed to get to my car in a rush to follow an ambulance.  I wasn't smiling.  He continued heckling me and I should have just smiled and let it be, but instead I explained to him that the ambulance was carrying my son and that he ended up dying.  "What a bummer", the therapist said.  "Ya", I replied.  Then he said, "Well, you seem good now".  "Ya", I replied.  I should have kept my mouth shut.

As much as I say that I have given up trying to explain what is helpful for grieving parents to hear, I guess I am not really.  People still waste so much breath trying to convince me to be happy.  I WISH people could just hear that I am unhappy and be ok with that.  It is what it is.  I am not happy.  It is lunacy to think I would be happy and yet the argument continues and I am so, so tired.  I am just exhausted and I have WAY too much to worry about.  For the love of god, if you want to be helpful, accept me in my broken state for now.  Otherwise, please, please, please just leave me alone.  (Perhaps this is why I don't hear from so many of my friends?)  For those who are looking for accurate portrayals of what "this" feels like, I suggest reading "The Knitting Circle" or "Comfort" by Ann Hood.  Or, as some of my readers commented yesterday, rent "Rabbit Hole" with Nicole Kidman.  Warning - it isn't uplifting.  But, it is the truth.  As I mentioned yesterday, I don't think any of the movies that you normally see about grief do the process any justice at all.  And, I truly believe that the grief of bereaved parents is unique.  It is not the same as the grief of widows and widowers, or those who lose grandparents, friends, or anyone else.  Those griefs are unique as well.  I found this short video this morning.  One of my favorite bloggers, Heather Spohr, answers a woman asking how she should talk to her friend whose child is dying: http://www.momversation.com/momversation/loss-child-what-do-you-say.  As I continue to justify my feelings to well meaning friends day in and day out, I have to wonder if am I wasting my time.  I believe that for the most part I am.  But, there have been a few people who have come around over the last six months.  Thank you to those friends who have stood by us and made the effort to try to understand.  Ted and I both have appreciated your support so very much.

No happy ending

I wake up and realize that Max isn't there.  Where is he?  Oh, ya, he is sleeping at my mother's house.  I call her house, nobody picks up.  I call her cell.  No answer.  I call and I call and I call.  Then I remember that we all have an event we are going to, so maybe they have already left for the stadium.  I get in my car.  It won't turn on.  I try over and over.  It won't ignite.  I call again.  No answer.  I get my bike.  I ride and I ride.  I call at a stoplight.  Ringing and ringing.  My bike gets a flat tire.  I throw it on the sidewalk....I'll come back for it.  I call again.  Nothing.  I am running and running and running.  Finally, I get there.  I see my mother.  She is sitting with Max.  I yell, "Maxie!".  He sees me.  He smiles.  I run to him.  I take him in my arms.  I cry and kiss him and hug him.  What was I so worried about?  He is just fine.  He is just fine.  And then I wake up for real.  It is dark in the house.  Max is not here.  I remember he is dead.

In the movies, people don't grieve much past the funeral.  We watched the Descendants this past weekend.  Some people warned us not to watch it....it was too sad.  Too sad?  Not by a long shot.  Each family member had their one touching moment, their one medium sized cry or plea, and then done.  They were on the couch eating ice cream in the next scene.  No wonder nobody gets it.  Is that what you think grieving is?  You say a tearful goodbye and then go eat ice cream? No. Uh Uh.  Grieving is SO much more than that.  Ted says nobody would want to go watch a movie where the people continue to be sad after the funeral.  I would!  I bet other grieving people would.  Sad has only started at the funeral.  Horror only begins at the ER and when the life support gets pulled.  Then the questions REALLY start to swirl in your head.  What really happened?  Is there something someone isn't telling us?  Could we have left him on life support?  Would anything have changed?  Was I a bad parent?  Did I do something to deserve this?  How will I live without my baby?  Why would I even want to live without my baby?

The nightmares come and go but the ongoing real-life nightmare continues.  Haven't you learned yet that life is not a movie?  Sometimes there is no happy ending!

Photos of Maxie

People often write me and tell me that they want me to post more pictures of Maxie.  It is almost like they think that maybe I am withholding something.... but I know it is really because the posts about Maxie are more upbeat.  Less depressing.  Plus, I like to think it is because they have also fallen in love with his cute little face.  I wish I had albums full of Maxie photos.  I wish I had ENDLESS photos of my baby.  Much more than that, I wish he was still here for me to continue taking photos of (and to kiss his cheeks, and cook for him, and change him, and bathe him, and dance with him...you know the drill)...I'd post a picture every day.  Sadly, not only do I not have Maxie anymore, I also don't have endless photos of him.  I have a lot...but not enough...NEVER enough.  I wasn't a stay at home mom.  I was lucky that his daycare took photos of him a few times a week and emailed them to me.  We didn't take nearly enough videos of him (for this, I could just die..because I have to imagine him using my memory always and sometimes I can't trust my memory).  If I posted a photo of Max every day, it wouldn't last for more than a few months.  I know it would be better if I had a new story and photo of Max to share every day....but he was only here for 9 and a half months and he didn't get to make nearly as many memories or take nearly as many photos as he should have during his time on earth.

Another lonely Saturday

When it is a Saturday and Ted has gone to work, there is absolutely no reason to get out of bed.  In fact, I try to sleep as long as I can so that there are less hours in the day that I have to be awake.  On days like this when Maxie was alive, I would plan a whole day for him and I to enjoy together.  We'd walk through the neighborhood, or go visit grandparents, or play at home, or visit with friends.  I remember thinking how awesome it was to have Max, my little pal, so that I was never alone when Ted had to work.  I always had a playmate.

The house next door was empty for months until a few weeks ago when a family moved in.  They have 2 kids I think....Ted met them and told me but I don't remember.  Of course, he explained that he lived next door with his wife and two dogs.  That is our new family description, which is why I don't want to meet anyone new.  Anyway, these kids play outside all of the time.  The sounds of them playing make my heart race and the dogs get all worked up too.  Layla and Jake run outside and bark at the fence that separates our yards until I have to get out of bed, open the door and call them back in. Sometimes I shut them in my room until they calm down.  These kids must be homeschooled or something because the playing goes on all week long, all times of day.  I usually put on music or the television loud to drown them out.

Speaking of children, and I know I've already written all about this...but it is getting worse.  Last weekend, Suzy and I went to get manicures and a baby about eight or nine months old came in with his parents about 15 minutes after we sat down.  The two times I went to yoga last week, there were babies in my class.  On Monday, the baby was about the age Maxie would be and he was with his mommy sitting right behind me and my mom.  At one point, his mom was even breastfeeding him in the class.  He was a good boy.  So cute too.  With a little knit whale cap.  It is so incredibly painful!  Thursday, a mommy brought a little girl to the class.  She was probably just under a year.  She started crying early on and the teacher asked her to leave.  What a relief!  What I guess I still don't really get is why people bring their babies places that aren't super baby friendly.  I mean, there are baby and me classes at the studio.  Why bring the baby to an adult class when you know that it will bother people?  When Max was alive, I didn't really like bringing him places that people would glare at him because, honestly, I didn't want all of that negative energy on him.  It wasn't even about the people in the restaurant being bothered.  I don't think I cared about them so much.  I didn't like so much negative attention being aimed at my sweet pea.  Can someone explain the logic behind bringing the baby to non-baby friendly places?

I have to admit though, we brought Max and Sadie to Byblos sports bar in Costa Rica so that we could watch a Giants game.  I actually think that very few people even noticed and there are always children in random places there.  It is a sweet memory.  Maxie was wearing his helmet.  It felt like he was supporting the sport with his head gear.  I remember bringing him back to the pool table area to change his diaper.  He was such a good boy.

I've been missing him like crazy.  I cannot believe I have made it six months.  I have heard of people   dying of a broken heart and I think I keep expecting it to happen to me.  Instead, I am just living with this chronic pain.  I see his face everywhere I go.  I want to kiss baby cheeks and I have no baby to kiss.  I have no reason to get out of bed except for to say I've done it.  I cannot believe this is my life.

Getting over you not getting over me not "getting over it"

A friend of mine lost someone very close to them a couple of years ago.  It was a fairly sudden loss and the person who passed was way too young....and a parent....and a supportive spouse.  My friend went into hiding, put his life on hold, looked for answers, stopped engaging in the celebrations of life, and became very depressed.  Many months afterwards, I remember thinking.....it is time for him to re-engage in life.  It is time for him to "move on".  His loved one would want him to enjoy life!
I had NO FRAKING CLUE!  In my heart, I meant well.  I wanted to see this person happy again.  I wanted to see the people around him happy again.  I had no experience at all to tell me that grief doesn't work that way.  I just didn't know any better.

I remind myself of that every time I hear people saying (to me directly or to others who then tell me) that Ted and I need to "snap out of it", that it is time for us to "move on".  They just have nothing in their experience at all to help them understand.  There seem to be two kinds of understanding people with respect to this situation - the people who get it because they have experienced tragic loss themselves and the people who get it because they trust that those of us who have been there are legitimately feeling authentic and "normal" feelings in response to a tragic loss.  The ones who don't get it, in my mind, believe that they know better...even though they have no experience to base that on.  I actually think it is extremely arrogant (and I admit that my feelings about my friend were based in complete ignorance).  My hope thus far has been that the ones who think they know better will begin to believe that what I am telling them (as someone who is actually experiencing the grief) is true.  That complex grief and tragic loss is not something that one gets over in six months.  If they can't learn that by trusting those of us who are going through it, I hope that they never will learn it themselves. Sadly nobody is immune from tragic loss.  It may just not have happened to you yet.  Tragedy can happen to anyone.  If it does, you can come to me to talk.  When others don't understand you, I will. What I am beginning to understand is that most of those people will not learn this....that instead, I will be the one to learn to accept the arrogance and ignorance of others.  I will learn coping mechanisms to be able to tune these people out.  They don't matter to me and my process at all.

I have often wondered over the last six months why nobody told me to "get over it" in the year or so following the break off of my engagement twelve years ago.  Friends and family continued to be supportive for as long as it took me to heal.  Six months after a divorce, most people are still hurting.  Six months is NOTHING.  I remember people saying to me that it takes half the time you were with someone to get over them completely.  So that if you were with someone for 4 years, it would take 2 years to get over them completely.  People "get it" because most people have had a broken heart at some point or another.  They remember it taking time to get through the loss.  You don't believe me....but you should....losing a child is not something that takes six months to get over. It just happened.

I am getting better at "getting over" these kinds of comments.  I spent a few hours yesterday fuming about the latest person I have heard is saying that I need to "snap out of it".  Then, I just snapped out of it (fuming, not missing Max).  Even though she was close to Max too (or so I thought), she just doesn't get it.  It seems she is getting bored of everyone being sad.  She never will understand unless something tragic happens to her and then I KNOW she would be destroyed.  She is the kind of person that gets very upset about much less.  When I see her, my expectations will be low.  I will not be surprised when she tells me that everything will be ok because I can have more children.  I will practice deep breathing and try to tune her out when she gets all worked up about things much smaller than losing a child.  The fact is, I am not getting closer to "getting over" Max...because that will never happen.  It is not even something I am striving for.  Rather, I am striving to eventually incorporate this loss into my life and find new hope and blessings.  Over the last six months, I have gotten incrementally better at coping with this very difficult life of mine.

You can think that we should behave any way you want.  But, don't EXPECT me, or Ted, or my mom, or my dad, or anyone who was close to Max to ever "get over" him.  He will be in our hearts and in our minds for the rest of our days.  If you are waiting for that magical day when we have moved on from Max, you will be waiting a long, long time.  And, I suppose if I am waiting for the magical day when you shut up about moving forward and getting over it, I will also be waiting just as long.

Bleary eyed baby

Maxie got really good at naps.  He napped every morning for an hour after his morning routine.  He napped again from 10am - 11:30 or 12.  He napped again from 3pm - 4/5 pm.  Little sleepy head.  But, he wasn't always a good napper.  When I first tried to get the naps on a schedule, he would cry and cry, which broke my heart too much.  Often, I "saved" him from the naps.  I couldn't bear to listen to his sobs.  Then I would be stuck with a bleary eyed little pumpkin, who always did his best to smile through his tears.

Conversations

Last night the nightmares came back.....STRONG!  Really bad ones.  I won't tell you about them all.  But, I will tell you about the one I had after finally falling back asleep at 4 am after almost 2 hours of lying awake with a racing brain.  I dreamt that another couple I know lost their child from SIDS too. They are a couple that I am friends with.  They had a baby around the same time as we had Max.  I dreamt that Bianca asked me why I hadn't called her yet...that she and I would be good support for each other.  I thought in my head about all of the cute Facebook photos I had seen of this baby and how sad that someone else I knew was going through this.  I thought of how sweet this couple is and it made me sick to know that their lives had been crushed like ours.  And, at the same time, I felt a huge relief that I had someone within my extended circle who could relate to me.  Someone who wouldn't see me as a freak show.  Someone who would know how hard this all is.  I woke up and remembered that this baby is still alive.  He is over one years old now.  He is probably super cute, but I wouldn't know because I avoid their Facebook photos.  I felt sad waking up and realizing that baby is alive and then I felt sick that any part of me wished that baby had died of SIDS.  

This super weird video was posted on another grieving mom's blog.  While I think it is so weird that they are all talking like robots, I also feel like most of the conversations I have with people about losing Max are robotic.  People are going through some weird motions with me.  Lots of times the conversations end with a proclamation about how the other person is going to go home now and hug their children extra tight.  (Strange.  When I broke up with my fiance, nobody told me that they were going to go home and hug their husband extra tight.  As taboo as that was, people still understood how to be sensitive to that much less of a big deal).  This is why I dread running into people.   I am afraid of weird robot conversations where I have to pretend anything at all is normal.  Luckily, I haven't had to have many of these conversations because I don't get out much.  My whole life, I have always run into people wherever I have gone.  When I was a teenager, this used to really impress my father.  Everywhere we went, I bumped into someone.  These days, I am trying to go places that I think nobody I know would go.  Honestly though, conversations like these don't only happen in person - they happen in emails and on Facebook and over the phone.  Makes me want to pack up and leave the country.  

Check ups

I used to look forward to taking Maxie to the pediatrician...is that sick?  I was excited to hear how well he was doing.  I liked to know how much he weighed and what percentile he was in for height and weight.  I liked knowing everything about him.  Most of all, I loved picking him up from daycare early and then getting to spend the afternoon with him.  I remember getting him a little early one day and then killing time with him in my car while we waited for the doctor's office to open after lunch.  I put on some music and the air conditioning and played with Maxie.  I had him stand on my lap and I sang, "I love everything about you!" (I think I might have made that song up) to him.  We smiled at each other.  I clapped his little hands together.  I covered his face in kisses.  Remembering these details breaks my heart.  I long to play with him like this again.  I remember talking to him and saying, "We are going to the doctor and he is going to give you a shot but I promise I won't ever let anything bad happen to you."  I meant it with all of my heart and then I failed.  I promised him I would never let anything bad ever happen to him and a week later he died.  When I looked into Maxie's eyes, I knew that there was nothing in my life, nothing at all more important than keeping this little boy safe.  And, I failed.  Everything else in the whole world is meaningless.

The way Max acted at the pediatrician was an inspiration to me.  I had a bad case of dequervains tendinites after having Max.  It is an acute pain that occurs in a mother's wrists after having a baby that makes them really weak.  I had to go to a hand specialist and have a shot of cortisone right in the wrist.  The needle was really long and it freaked me out....but, I thought about what a champion my little boy was every time he got a vaccination and figured, if he can do it, I can do it.  The fear went away and the cortisone shot corrected the problem immediately.

I remember once sitting at the pediatrician with Max on my lap, waiting in an examination room.  I was reading to him and he was sitting up very straight and was very happy.  The doctor came into the room and looked at us and he said, "He is in a good mood."  I said, "He is always like this," and the doctor said, "it probably helps that he is on his mommy's lap....his favorite place on earth".  Not sure why, but my heart swelled.  It is such a vivid memory.  Could it be that my lap was his favorite place on earth?  Having him on my lap was bliss.  My little man.  My little monkey.  My favorite person.  I am sick that I failed him, that I didn't protect him.  It is the only thing that ever mattered and now he is gone.

I Ain't Mad At'Cha

Look, I know there are people who are afraid to reach out to me because they worry they will offend me.  I know that people are closely monitoring what they are saying because they think I will get mad at them.  I also know that sometimes when I write about something that hurt me, lots of people think, "She is talking about me!".  I want to address this.  While many, many people (most) have said things that have hurt me....99.9% of all of those people were coming from a good place.  Sometimes Ted hurts me.  Often my parents hurt me.  I am learning that nobody has the right thing to say because there is no right thing to say.  Losing Max is just terrible.  It just is.  I received a beautiful email last week from an old family friend and I didn't write her back right away, mostly because what she had written was so personal and so meaningful to me that I wanted to be able to sit down and think about my response so that she would know how much I appreciated it.  When I didn't write back, her family told her that she never should have sent the email, that it probably offended me.  They also meant well.  I would say again MOST people mean well.  There are certain comments that hurt me in the beginning that don't hurt me now so much.  The first few months were so raw, I couldn't see straight.  I felt really hurt when people tried to act like nothing had happened and honestly, that still hurts my feelings but I understand better now that most people are just uncomfortable acknowledging our loss.  In the beginning, I hated when people would flippantly ask me, "What's up?" or "How's it going?" or even "How are you?".  I still don't like the first two very much but if someone is asking how I am, and they actually want to know the answer, I appreciate it.  A lot of people said (and say) to me things like, "Don't worry, you can have more babies".  Again, I understand now, they just say this because they don't really get it and what they really mean is that THEY will be more comfortable with us when there is a new baby.  They don't realize that while a new baby would bring happiness back into our lives, we will still feel the exact same grief of having lost Max.  Also, until I have another baby that survives infancy, I won't even necessarily believe that I can have more babies.  If you compared the loss of my Max to the loss of your dog, you hurt my feelings...but, again, I understand better now that you just don't understand.  I am not mad at you.  I would just advise you to not make that (or similar) comparison when you encounter people who have lost someone they love in the future.  Now, there are people who have genuinely hurt me so badly that I really want nothing to do with them ever again.  That is sort of inevitable.  And, when I have written about those instances on my blog, I have dumbed them down to protect the identity of the person I am writing about and/or what happened was so hurtful, I don't even want to get into all of the details.  I am talking about a handful of people.....people that in retrospect have, for the most part, been hurtful to me always...not just after Max passed.  You are most likely not one of them.  I actually think I have confronted almost all of them, so if you haven't been confronted by me, I wouldn't really think twice.  And, I will admit, I am disappointed in some people who I thought would be here for me and haven't been. Again, I am not mad at them either.  They have done the best they could and I forgive them for not having the strength to confront this horror.  It takes a unique kind of person.  I am so lucky that I befriend a little Bianca on the playground at Third Street School, that I instantly bonded with a hilarious girl at work named Marla, and that I received a random phone call from a distant cousin from Mexico City almost ten years ago.  These people and others just happen to have wonderful coping and relating skills.  I am lucky.  So, listen, there is hardly a thing you could say that would really offend me that much.  I have pretty much outlined all of the doozies.  If you have reached out to me with good intent in your heart, I have seen it and it doesn't matter that you have said something that hurt me.  Plenty of the people who have stuck by me have said things that were hurtful.  In many cases, I have just told them that what they said hurt me and then we have moved on.  I am also sure that I have said many things that are hurtful over the past 6 months as well.  I am learning how to do this also and it isn't easy from this side either.  

In finally some good news - Ted's Giants are going to the Superbowl!  He is very excited about it!  Ted deserves to have something to be happy about this year.  Go Giants!

New Couch

I'm getting kind of repetitive.  Pain, anguish, missing, longing, last days, six months.  I am repeating myself.  But my days and hours are full of this repetition.  The same thing over and over again.  Pain, anguish, disbelief, loneliness, disconnection....it just never seems to end.

Yesterday Ted and I went shopping for a new couch.  We currently have an Ikea denim couch that I bought in 2007 for about $500.  That was my budget in 2007.  It is definitely time for a new couch.  Actually, it was time about 10 minutes after the Ikea guys delivered the denim one back in 2007.  I had moved into my apartment in South Carthay very unsure about whether Ted would join me there.  He was living in San Diego at the time and we were driving back and forth every weekend.  He liked to tease me and tell me at times that he wanted to be with me and that he had been looking online for architectural jobs in Los Angeles.  A few days later he would tell me that he wasn't sure, he always wanted to live in Manhattan and so that was still on the table.  In fact, for a few months, I stayed with my mother so that when Ted moved to LA, we could pick out an apartment together.  Finally I decided I needed to move on my life, with or without him.  So, I found this apartment on La Jolla Ave. and moved in.

A few months later Ted moved in (I kind of thought that as soon as I started moving ahead "without him" that he might feel a little less threatened).  When he moved in with me, he also moved in with all of my stuff.  Not one for material stuff ever, I have never really lived as an adult.  My furniture (and wardrobe mostly) is made up a hodgepodge hand-me-downs and nothing really goes together.  If you know Ted, you know he is a little fancier than me and has an eye for details and has really good taste (as evidenced by his choice in wife.....but I digress).  Anyway, he hated the couch immediately....it is small.  It is too low to the ground.  It is SO uncomfortable.  About a month after he moved in we decided that it really stunk and we carried it down our long narrow staircase (no easy feat) and out onto the street and tried to strap it to the top of my CRV (something else I bought in the early days with Ted that he wishes we could get rid of).  Once we got down there and tried hoisting it on the car, we realized this plan was never going to work and so, we just kept the stupid couch.  Getting it back upstairs was as much of a nightmare as bringing it down was.  When we think about this ridiculous hour or more of moving the couch outside to the street and then right back up again now, we laugh.  Ted says it looks like I was about to blow a gasket....I was sweating, bright red, losing patience.  I agree that it was certainly not my finest hour(s).

By now there has been a lot of history on this stupid couch.  Houseguests have slept on it.  Countless hours of television have been watched on it.  Dogs have napped on it.  Cats have peed on it (or rather, one cat has peed on it and I have washed the cushions....so don't get too grossed out former houseguests).  Maxie has "watched" football with his daddy on it and been nursed on it and been cuddled on it and has spit up on it.  There is actually a little patch of Maxie spit up on the back of the couch.  This patch of spit up is what has me irrationally clinging to this atrocious piece of furniture.  Nevermind that I have three freezer sized zip lock bags of Maxie's dirty clothes saved in his room.  I am clinging to the physical evidence that he existed, that he was mine, that I was his mommy, that I was A mommy.

The good news is, we found a really nice sectional from a better place than Ikea.  I am actually excited to sit on the new couch.  I spend HOURS on my couch.  Not only do I watch tv on the couch, I blog from the couch, I work from the couch, I nap on the couch, I eat meals sitting on this couch, I snuggle with my doggies on the couch.  It'll be good to be comfortable while doing all of these things.  For those of you looking for "news", this is about as good as it gets for now.  For everyone else - I bet you didn't think I could write THAT much about a stinky couch.

The Ripple Effect

It has been six months since Max took his last breath.  I actually believe that his little spirit had left his body long before, perhaps even at daycare two days previous.  But, we held on, believing he would be a miracle baby.  Sadly, though he will always be a miracle in our eyes, he did not make the  recovery that we longed for.  We disconnected him from life support just after 5 pm on July 21st.  I kissed him and hugged him tightly and told him how much I loved him.  Teddy picked him up to hug him and wrapped his arms around him.  I will never forget how terrible it felt to get into our car and drive away from the hospital with an empty carseat having just left our baby with strangers.  I will never forget waking up in the middle of the night that night in horror and laying down on his play mat in our room and feeling the breath come and go so deeply from my lungs, my soul feeling crushed by the weight of my sorrow.  I will never forget it because I still feel the same sense of horror every single day at some point or another or often, all day long.  For some reason, I thought I remembered our grief counselor saying that grief would get easier at the six months mark.  In most ways itt has gotten harder.  When I asked her about it, she said, "No, I said six months is usually the worst.  The people around you get compassion fatigue.  Life continues like nothing happened, and you are just as broken as you were when the death occurred".  And, that is with uncomplicated grief (aka - your mother, father, grandparent, age appropriate friend) dies.  With complicated grief it is even worse.  This explains the return of my early feelings of complete despair.  That I survived this week, particularly Monday and Friday, is nothing short of a miracle.  I know I sound dramatic but if you had spent even one minute in my head on either of those days, you would understand. Ted and I have talked a lot about the ripple effect of this loss - at the center is the agony of losing the person we love most...but then comes our being so misunderstood, our loss of connectedness with close friends and family, our difficulties concentrating at work or in life, our worry about the future, our profound disappointment.  Again, though, that stuff is all secondary....at the heart is really Max.  Without Max, life is HARD.  Quite honestly, without Max, life doesn't really feel worth living.....we just keep doing it, hoping that eventually down the road, something will lift the cloud...even a little bit.  We pray it will happen one day, but for now we realize that it has ONLY been six months.

Six Months Later...

I cannot believe it has been six months since the last time I held my baby...and at the same time, it feels SO much longer than that.  Things are really hard these days.  Our therapist tells us that six months is a really difficult period.  People have really moved on, everyone treats you like it's business as usual, and you continue to wake up every single day to the same painful nightmare.  Every day I think to myself, "I just need to make it through this day", but the truth is....then what?  I have to relive the same horror and pain the very next day.  What is the point?  Seriously.  I wake up every morning and the memory that there is no Max anymore hits me.  My chest feels heavy and my eyes fill with tears.  What is the point?  I really don't connect with anyone except Ted.  I don't have my baby.  I feel all alone.  It is like I am living in a different universe than anyone else I know.  They don't speak my language, they don't have my values, they aren't interested in my story.  I remember visiting a girlfriend in Amsterdam in my twenties and hanging out with her friends for days and nobody spoke English to me.  All conversation was in Dutch and I just sat there staring at people telling animated stories and laughing and looking over at me for recognition about the funny stuff going on and I was completely bewildered.  I just sat there breathing and blinking.  At least there were colorful buildings and people to look at.  I am having that experience again but everything is grey.  I can't follow the conversation.  I don't know what I am doing here.  My heart is hollow, the lump in my throat keeps growing, my head is spinning and I fantasize all day long about pushing my nose into the back of his little head and breathing in his baby scent....but I can't.  How did this become my life?

A weekend for Maxie

On Thursday, March 15th (note the date change), we will be celebrating Maxie's life and raising money to plant many more trees in Maxie's Forest.  The event will take place at the famous Comedy Store on the Sunset Strip.  Doors open at 7 and there will be a silent auction and a raffle with lots of great items to bid on to start the evening.  The comedy show will start at 8 pm.  The price of admission is $40 with advanced purchase and $50 at the door.  This does not include the club's two drink minimum (including non-alcoholic beverages).  To purchase tickets ahead of time and ensure a seat at the event, please call the JNF office in Van Nuys at 323-964-1400 and make sure they know that you are reserving your spot for the Night of Comedy event for Maxie's Forest.

My sister-in-law, Beth, is also gearing up Team Maxie again for two runs - a 5k on Saturday the 17th and the LA marathon on Sunday the 18th.  We know she might be the only marathoner again (but encourage others to join her if they can), but hope folks will consider participating in the 5k.  You can even walk a 5k.  This would be a great opportunity to join the Team, and get coworkers, friends and family to sponsor you by making a donation to Maxie's Forest.  If you are interested in participating in one of the runs, please let us know by emailing teddyabby at gmail.  We will have more information soon about how you can be part of the fundraising effort.  You can find out more information about the LA Marathon here: http://www.lamarathon.com/runner-info/register/ and the 5k here: http://www.lamarathon.com/event/la-5k/.  It looks like you can register for the 5k the morning of the run and you can register for the marathon online.  We have nothing to do with the marathon, so rather than coming to us with questions, we encourage you to contact the LA Marathon organizers directly at: 213-542-3000 or email info@lamarathon.com.  


Today marks six months since the last time Ted and I were with our Maxie outside of a hospital.  For the two of us and our families, raising the funds to be able to plant a forest in Maxie's memory has been a small ray of light in our otherwise very dark lives.  Our goal is to raise $100,000 for 20,000 trees to be planted in the Carmel region of Israel, where I used to live, and where over six thousand acres of trees burned in a terrible forest fire in December 2010 - two months after Maxie was born.  This is a place where we will visit with Maxie's siblings (even writing that reminds me that Maxie will never be there with us and it breaks my heart and causes me physical pain) when they are old enough to have bar/bat mitzvahs.  It will be a place that we send our friends and families.  It is a place where we can celebrate Maxie's brief but wonderful life.  


Thank you so much for supporting us, our families, and our Maxie.  We look forward to seeing you the weekend of March 15th - 18th.  If you cannot be at the event or participate in either run, we encourage you to consider supporting a runner.  We will send more information about how to do that when we have the fundraising page for the LA runs set up.

NO CONTROL

I got a call last night around 9:30 from our friend at the Comedy Store, who told me that our event date for Maxie had to be changed because Pauly Shore's brother needs the 18th for an event he is doing.  From what I gathered, the Shores own the club.  Plus, they have an all star line up that trumps our benefit for Maxie.  Our friend Shawn was so sweet and there was nothing she could do about it.  She offered us Thursday night, March 15th instead.  We took it.  But, I got off the phone and burst into tears.  I felt so defeated....again.  I have poured a lot of myself into this benefit for Maxie because at this point in time, the only way I get to mother my child is by writing in this blog and raising money in his name.  I know people have bought plane tickets and offered to volunteer and my cousin Sharon put together the flyers and we have a web registration ready to go public on the JNF website and I just posted a Save the Date on my Facebook page yesterday......AND I HATE FACEBOOK....and the only reason I am still on there is so that I can promote Maxie's Forest.  I feel so stupid for even trying and I don't know....it's irrational, but I hate how out of control everything in my life is.  I could not control this event, I cannot control what insensitive things people say to me, I cannot control when and where I bump into babies (in bars, in nail salons, in restaurants late at night, in UNLIKELY places that you would never see a baby or child), I could not control my pregnancy in the fall, and most of all....I could not control losing Maxie.

I remember dropping Max off with whoever was taking care of him (whether it was daycare, or my mom, or even Ted) and going through my list of how to handle him: make sure that he gets .03 ml of Zantac, this is how his physical therapy is done, do not microwave the milk, he should sleep with nothing else in his crib.  I would start talking and I guess I sounded like an over the top protective mom and whoever I was talking to would probably start thinking to themselves, "yack, yack, yack, I know what I am doing".  I actually remember my daycare saying that many times without the yack, yack, yack part.  So, you just have to leave your most precious person with someone else and trust that, in fact, they do know what they are doing.  And, for the most part, I always trusted that everything would be ok.  How stupid I feel!  How sick I am about it every day!  I will never know what happened the day he stopped breathing.  I just have to TRUST that it happened like it was told to me (even though between a few of my family members, we have heard varying accounts of the story).  We are told it was SIDS because there were no signs of suffocation or any other traumas.  He looked perfectly healthy, except for the fact that he stopped breathing and died!  But, I know the basic rules of how a baby should be put down to sleep and I will never know if those rules were followed because I was the annoying mom who repeated the "safety first" rules over and over and probably sounded like a nut.  And, now I am the bereaved mother who repeats other stuff like how sad and anxious and lonely and sick and miserable I am over and over and I sound (and AM) more nuts.  And, I know that I want more children.  And, I know that if I ever leave my child in the care of someone else again, they will either follow my rules or they won't.... because I HAVE NO CONTROL.  

So, I guess the change of date for our benefit was just a trigger reminding me how pointless and stupid it is to plan anything at all.  And as Ted pointed out, it will be fine on another night.  There is enough time to change things and spread the word.  Of course, I am nervous the date will change again but there is nothing I can do about it.  In the big picture, this is something relatively small and perhaps even though there will be some people who won't be able to make a Thursday who would have been able to make a Sunday, there will be others who will be able to make a Thursday but wouldn't have been able to make the Sunday.  This is not a big deal.  This is the kind of thing that made me crazy before I lost Max.  Before I lost Max - when the small things like angry mean donors, and uncooperative board members used to make me upset.  Now, if nothing else, these small things should be put into a little bit more perspective.  

So - I will post a really informative post in the next couple of days with ALL of the information about the benefit for Maxie's Forest.  In the meantime, please mark your calendars for the new date - Thursday, March 15th - A Night of Comedy to Benefit Maxie's Forest.  Doors open at 7, there will be a silent auction and raffles and cocktails from 7-8 and the show will start at 8 pm.  I am so sorry for any inconvenience and thanks for your support.

Sweet boy

Sweet boy.  I miss your face.  I love your happy disposition and your easy going air.  You brought a calm into my life that I fear might be gone.  You brought a love into my life that I have never felt before.  Sweet little boy.  I long to kiss and hug you.  I ache to curl up on the couch and cuddle with you.  Your soft cheeks against my cheeks.  I would give anything to love you again, my love.  I want to cover your face with kisses.  My heart is always breaking.  I am so lonesome.  Sweet boy, I used to feel your spirit with me and now I don't as much.  I hate being without you, but I am happy to see you in my dreams from time to time.  There is no doubt, sweet baby boy, that I will love you to eternity.  You brought out the very best in me and when you left, only the worst in me remains.  I am sorry sweet baby that I wasn't there for you that day or so many that came before.  I feel sick about it every day.  I am so sorry my sweet baby boy.  I love you to the moon and beyond, my monkey.

Too much to bear

Ted and I went on a long walk around the Hollywood Reservoir yesterday.  It was nice to get out of the house and be "in nature".  As we rounded a few of the corners, we ran into happy families on bikes, little kids being carried in backpacks, a mom or grandma reading a book to a really cute and tiny little girl.  Our faces and hearts just sink, but we get through it.  After our walk, we decided to go the supermarket.  Holy Sh*t!  The market can be the cruelest place ever.  Yesterday, the market was filled with SO MANY cute kids, all loud and chattering.  Parents were talking to their kids and saying, "Do you want bananas?  Does mommy like milk?  Do you want to get turkey for a sandwich?", in cute voices....the way you talk to children.  The voices were getting louder and louder and the kids were on every aisle and the momentum of pain kept building and building until Ted looked at me with terror in his eyes and said, "We need to get out of here!" and I had to put my fingers in my ears and close my eyes.  I think it was the WORST trip to the supermarket we've had since Max passed.  On the way home Ted said, "Let's go straight home and lock the doors!".  The outside world is a horrifying.

The burden of this pain is absolutely unbearable.  What I hear over and over is that you don't "get over" the death of your child, you just learn to live with the hole in your heart.  It is something you will live with until the day you die.  Like I really needed anyone to tell me that anyway.  My love for him continues to grow, even though he has been gone for almost six months.  Of course I will never get over this.  I will never get over Max.  I will never get over my son.  The burden of knowing this is my life...that it will always be hard...that I will always struggle....sometimes, it is just too much for me to bear.  It is too much for anyone to bear.  Even when people remind me that there will be things to smile about again.  That there will be more children, there will be more family vacations, there will be more love and happiness...I know and am fully aware of what they ignore, which is that Max won't get to be there for any of it.  Max won't get to be here for anything.  It's too much to bear.  I just cannot bear it.  I know I will make it through this day and yet, I still feel like if I do, it will be a complete miracle.

Reminders

I have reminders of your life that was cut short everywhere.  In your room is a packed diaper bag.  We must have been planning a trip to grandma's or grandpa's because your tiny little bathing suit is in the bag.  I see a blanket in there covered with elephants and a small toy peeking out.  I can't bring myself to unpack it.

In our room is your jumperoo.  You loved it.  Your face would light up as the music would play and you would jump up and down over and over.  It stands on a brightly colored puzzle playmat that I just put together for you the week before you stopped breathing.

When I open the drawer in the kitchen for utensils, I see your blue and yellow spoons staring at me.  Your blue teething ring is in the freezer.  Your bottles are stored where our tea is.

Your washcloths sit neatly folded in the bathroom drawer, your infant medications - gripe water, Zantac, and your infant tylenol are all lined up in the medicine cabinet...as if the nosefrida to clear your stuffed nose.  The bathtub looks empty without your big blue whale tub in it (we finally put it in storage).

Every reminder cuts through me like a knife.  I am suffering and in so much pain without you.  This new life of mine is agony.  I love you with my whole being Max.  Every minute of my life hurts without you.  You made me so happy.  I wouldn't trade a second of it.  I just don't know how I am doing this.

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A reader posted a comment on my blog that I want to respond to because it is so important.  She asked how she should respond to her friend who is grieving. It scared her to ask me.  Assuming you care about the person and actually want to maintain this relationship, it is important.  I feel like throughout the last six months I have written pieces here and there of what I want but most people have ignored my guidance, which is why I have simply given up.  But, I would simply say this: everyone is different BUT keep checking in with her.  Many mourners go into hiding after the funeral and then the people who care about them disappear and never reemerge.  It makes sense, you feel pushed away.  She may be in hiding.  She may not want to talk to you, she may not pick up your calls or write you back, but it will mean a lot to her in the long run to know that you still care and haven't forgotten her.  Even if you annoy her in the short term, she will remember that you stuck by her.  So, keep sending texts, emails and leaving voice messages.  Just say, "I think about you and (whoever she lost) every single day and I will always be here for you as soon as you are ready".  Instead of saying, "if there is anything you need, please let me know"....it is fine and the sentiment is very nice but most likely, she isn't going to call you and give you her grocery list.  But, you can offer to do concrete things (if you actually want to) - offer to pick up or drop off dry cleaning, many friends have offered to go to Target for me since they were going themselves, offer to make a grocery run, offer to bring over lunch or dinner, offer to walk the dogs or babysit the baby.  I have some friends that have offered to be helpful in non-errand ways as well... to teach me to sew or knit, to teach me how to use my fertility monitor, to teach me a new card game, to quilt something in memory of Max, to help us organize our event in his memory, to participate in anything that your friend might be organizing in memory of their loved one.  (I forgot to mention my cousin Laurie the other day, who is always offering to help us with Team Maxie stuff).  If you offer to do something for her and she accepts, don't forget or flake out (if at all possible).  Things happen -people get sick, cars break down, people have to work late etc...We know that, but it feels embarrassing and like we have been forgotten when you just flake or forget.  We already feel isolated and forgotten so this doesn't help (and for the love of god, if you DO forget your friend, don't post photos of the awesome thing you were doing instead on your Facebook page - ouch).  If you DO see her or talk to her, don't try to cheer her up.  She may not be up for it.  Your job is not to take her out on the town or get her to laugh or make her feel or do anything she isn't up for.  Ask her what she is comfortable doing - if she wants you to come over, find a time to do that. She may not want to leave her home, it may not feel safe.  If she wants to go out, ask her what she is up for.  I don't know who she lost but the world can be scary - I know I get very sad when I go out and see lots of babies so I try to go places that I am less likely to see them.   Don't be afraid to talk about the person she lost.  We are scared you will forget the person we loved so much.  It can be as easy as saying, "the world is not the same without so and so" or "It must be so hard without so and so" or "I am so sorry you are having to do this with out him/her".  If you didn't know the person or only met them a few times, you could say, "I'm so glad I got to meet him that one day", "I wish I had been able to have spent more time with him", "I am so sorry I never got to meet him.  It sounds like he was a wonderful baby/person".  If you really knew that person - you were an uncle or a neighbor or grandparent - tell her how much you love and miss that person too (assuming you do).  The worst experiences I have had have been with people who treated me like everything was exactly the same as it was before Max was even born.  They greeted me happily, gossiped at me, never once mentioned our loss, kept going business as usual.  Terrible.  At least ask, "How are you holding up?"  and then LISTEN.  Do not immediately start talking about your problems.  It feels like you are trying to prove that everyone has their issues.  Losing someone to death (or being sick of a serious disease oneself) is much more dramatic than any drama you are having at work, with your girlfriend, with your parents, even financially.  (A friend of mine who had cancer told me how painful it was when a girlfriend came over to visit and went on and on about her boy drama.  This friend would have given anything to get out of bed, stop all of her cancer treatments, and just have a little boy drama).  It is important to you to feel like a relationship goes both ways, we understand, but be patient, we'll get there.  Try to be there for the griever and not for you for a while.  It will feel unequal for a while (and I am sure I sound selfish even saying it) but your friend will eventually come around and be able to focus on you again.  In fact, your friend will probably really want to focus on you down the road because you were the one who stood by her in her darkest hours.  Relationships ebb and flow and sometimes you put in more than you get out of them for a while.  If the relationship/person means a lot to you, invest in them for a while with no expectations.  Don't try to convince them of the "upside" - whether that is "he/she is with god now", "you will have more children/ you will find another husband and get married again someday", "he is in a better place", "everything happens for a reason".  There is no upside for those of us who have lost someone we love.  You just need to accept that.  Be gentle, be kind, throw your expectations out the door.  I hope this helps.

Dog Time

Every day without this face is so hard.  Every evening, my mom and her neighbors gather in the cul de sac on her street with all of their dogs and chatter and throw tennis balls.  They call it "dog time".  When I was at the end of my pregnancy with Max, I sometimes tried to join the crowd but I was usually too tired from a day of working to stand there throwing a ball and making conversation.  When my mom would babysit Max, she would put him in his stroller and bring him down for show and tell.  When she sent me this ADORABLE photo of a sad Maxie after babysitting, it said "dog time" underneath.  I have never been sure why.  He must have been on his way out to or in from dog time. Why did he look so sad?  Was it the teddy bear outfit?  Too much stimulation in the cul de sal?  I'll never know but MAN, this photo is cute.  I miss this face too much.  Every day without it is torture.  I miss this little monkey.  He is my whole heart and soul.  

Addendum

I shouldn't have named a bunch of people in my post today because I don't want anyone to think that I haven't appreciated their calls and emails and texts and food drop offs or anything else.  I simply wanted to recognize that a few people have gone beyond the call of duty (not that there is any call of duty).  My friend in France, Daphna, literally has written me almost every single day since Maxie passed (even though my responses to her emails are sometimes hostile and DARK).  My friend Rachel calls me several times a week, even though I almost never pick up the phone, and leaves messages with the time and weather in Philadelphia and alerts me when she is wearing her "Team Maxie" t-shirt.  My friend Jess has not left me alone and is always texting and emailing and responding to my blog even though I have basically taken a break from her for no reason other than that her son (from the playdate photos) was Maxie's future best friend.  I should thank ALL of the other friends who have donated money to Maxie's forest, who post comments on my blog, who have asked us to have plans, who have called me to let me know that they are thinking about us, who have told their friends about Team Maxie and Maxie's Forest, and everything else.  I did not mean to hurt anyone's feelings and I appreciate so much all of the love and support we have received.  

Nothing "set me off" yesterday, I am just coming to the realization that I can't control anything at all.  I couldn't control Maxie's death and I can't control the way people act towards us.  I can't make someone understand.  I can't make someone care.  I can't make someone be nice.  It is all out of my control.  My therapist told me that the sooner I come to understand that, the better I will feel.  She says people have moved on, that they probably DON'T really care, that even those who do, want to feel happy and so they are just going to try and make us jump on board the happy wagon no matter how much we resist.  I guess it was an "A-HA" moment but a reluctant one.  I have this ongoing irrational fear that I will run into someone I know while I happen to be smiling at something and that they will think, "oh good!  She is fine now".  Or that something good will happen, like getting a new job, and that people will think that fixes everything and I'm all better now.  It's actually not even so irrational, because it is exactly what happens, BUT the irrational part is that I care.  You can think I am all better.  If you see me smiling or hear good news about me, you can also think that makes everything ok.  I don't need to care.  I mostly have not cared that much since reaching my thirties about what people think about me anyway so I don't know why this situation is any different.  I want the world to know that Maxie was so important that it will take lifetimes before the world is the same again in his absence.  I want people to KNOW that part of us has been destroyed because he is gone.  If they see me smile, they might think six months made it all ok.  My therapist said I might as well just decide to be depressed the rest of my life if I am just trying to prove a point.  All that matters really is that we know the impact that Max had on our lives and to work on keeping his spirit alive as best as possible in his absence.  The truth is that she told me all of this with a harsh "tough love" attitude (which people LOVE to give me since Max's passing) and it just hurt.  She doesn't understand how I feel either BUT, she is right, it doesn't really matter if she understands.  I am not going to make someone who can't express themselves suddenly grow up and tell us how sorry they are for Max's passing.  I am not going to be able to influence someone who doesn't care to suddenly care.  And, who cares really?  There are certain people in your life who will just get it (and I am actually lucky that I have so many emotionally evolved people in my life) and there are a majority of people who won't get it, and that is ok.  Some friends and family are just there to drink beers with, eat meals with, talk about work, gossip about stuff with and that is all there is....it is surface and that is fine.  Some people will be able to get into the pit with you and know that what they are doing is soul saving work.  Some of my friends who have saved my soul should be thanked - Bianca, my cousin Sharon, Suzy, Marla, my sister in law Beth - these have stood out in the way that they have stood by me in my craziness.   I have so many other friends who check in and deliver meals and care so much and I love them.....to name a few - Kate (the meal train organizer), Carmen, Leslie, Rachel K, Jossie, Daphna, Eowyn, Jess, Greg, Courtney, Molly, Amy R, my step sister Lyndsey, Tallie, my brother Paul, Stacy, Danna, Lindsay, Erika and so many more (really - too many to name - if I forget you here, I haven't forgotten you).  I get stuck on the people who hurt me and I am going to TRY and let it go (if you know me, you know this isn't my strong suit.  I probably got it from my grandma Ann, who never let ANYTHING go).  It isn't worth it and I am sure nobody means to be hurtful, they just don't know how to be sensitive.  I am amazed by the quality of people that Ted has in his life as well (for the most part :)).  When we were on the East Coast (arguably one of the most vulnerable periods of time I have had since Maxie's passing), I felt embraced by love and support.  I was so impressed with the emotional maturity of his incredible friends and I grew to love them even more (and I have loved most of them from the very start).  When I have a rant on this blog, so many of the people who have made us feel so safe respond to me and feel bad and that makes me feel terrible.  Don't apologize.  You have been angels to us in the darkest moment of our lives.  We love you.  We know everyone is just doing the best they can....so are we.

Done

There is some stuff I have to let go of and I don't know why it is so hard.  Mostly it has to do with other people's reactions to and interactions with us.  I feel like I have tried so hard (probably too hard) to convey how devastating it has been for Ted and I to lose Max.  I have tried to explain why small talk or hilarious banter is next to impossible, especially without any kind of acknowledgement of our loss as a warm up.  I keep saying how much I want to hear that you remember Max, that you loved Max, that he was important to you.  For some reason, it is important for me to know that those people closest to us are grieving for Max too.  Sometimes I try to "model behavior" so that people don't come at me with so much exuberant joy and excitement (like "OH MY GOD!  It is SO good to see you!  or I hope this is the BEST birthday EVER!  or "Aren't you SO PSYCHED it is a New Year!?").  I feel like if I am subdued (which is my new natural state), people will understand to be more subdued with me.  I have to let it go.  It isn't working.  It is what it is.  Some people actually do feel grief but they can't say it because maybe it is too painful to say "I miss Max so much.  I wish he were here".  Some people probably feel compassion but they can't address it or just say, "I am so sorry about your loss".  I am sure there are many people who just want us to be our old selves again already and our losing Maxie just seems like a blip to them.  Plenty of well meaning people have offered to come over and "make [us] laugh."  People just want to be happy, even when they are interacting with us, and I have to get that through my head because I am wasting too much energy hoping to get someone to understand what it is like to lose a child.  I am not sure why I care but I want to be over it.  I am going to try to just be over that part of it.  I feel what I feel and you don't need to understand.  Perhaps I can be more accepting of the way life just is now and know that there are very few people who care to understand and I don't need anyone else to get it.  I am tired.  So, approach me however you want.  Say something or don't say something.  Try to make me laugh and try to make me forget (I won't forget but I can't stop you from trying.....that is crystal clear).  I have to worry about me, right?  This probably won't be a learning experience for you and that is fine.  I don't know what I was thinking - that somehow people would understand loss better or compassion better or I don't know.  It is silly.  I am throwing away expectations (at least I am trying).  If you hurt me, you hurt me and vice versa.  You are on your path and I am on mine.  Good luck to both of us.

Playdates

When Maxie was little, I would take him over to my friend Jessica's house or she would come to mine so that our boys could "play" together.  It was really just a playdate for Jess and I.

As Maxie got a little older, we had more playdates.  Sometimes the kids would be interested in Maxie and that made him smile.

Still, the playdates were usually more for the adults.

In the last few weeks of Maxie's life, I saw the real joy that a playdate would soon be bringing his life.  I like to imagine how much he would love playing with all of the kids of our friends who were born around the time he was.  It breaks my heart in a million pieces, knowing how much he is missing out on....and how much we are missing out on, not getting to be a part of it all.

What an amazing friend Max would be, what a wonderful big brother, what a terrific son and grandson.  His personality was blooming at the speed of light.  My heart aches for what will never be.

My friends who don't know me

I have not been good at keeping up with my real life friends for the last six months.  I still love them.  I hope that eventually, I will be able to resume my place in the pack. I have felt so much support and love from them and I hope they know how much I support and love them too.  In the meantime, I have been keeping up with my blog friends....you know, the ones who have no idea who I am.  When they have good days, I feel uplifted.  When they have torturous dark days, I can feel that too.  I have been reading the blog of this woman named Molly, whose beautiful daughter, Lucy, asphyxiated on a piece of apple the size of a pea when she was almost two years old.  The story makes absolutely no sense and the tragedy of it just tears me apart.  Molly has the most engaging and exuberant personality.  If I lived in Park City, I would even want to be friends with her on her very worst days.  Anyway, she has a little boy now named Peter and she is pregnant again.  Her post today had me in so many tears.  It is so totally beautiful and I am so happy for her, even though I am every day so sad for her too. http://jacksonparkcity.blogspot.com/2012/01/what-i-never-imagined.html.  (Please read it, I promise it is worth it.)   What a complexity of emotions that only someone living with intense grief on a daily basis and still moving forward to continue building their family can feel.  Amazing.  She struggles daily and makes no excuses but manages to be silly and wonderful at the same time.  I should be so lucky some day.

Sometimes I need to share with you the stuff I read about other people because writing about myself all of the time feels a little self involved (even though this is my blog).  Sometimes I gather some strength and hope from the stories I read about other women a little further along this horrible path.  Anyway, this story, like my story, isn't just a story....it is really our true life and it can feel SO incredibly lonely.  Reading about the hopes and fears, tragedies and miracles that happen to others helps me to get out of my own head and reminds me that I am not alone.  Other people have been here before me and they are still standing, as I hope to be, at some point down this road.  

The Chord

We are connected,
My Child and I
By an invisible chord
Not seen by the eye

It's not like the chord
That connects us 'til birth
This chord can't be seen
By any on earth

This chord does it's work
Right from the start
It binds us together
Attached to my heart

I know that it's there
Though no one can see
The invisible chord
From my child to me

The strength of this chord
Man could create
It withstands the test
Can hold any weight

And though you are gone
Though you're not here with me
The chord is still there
Though no one can see

It pulls at my heart
I am bruised...I am sore
But this chord is my lifeline
As never before

I am thankful that God
Connects us this way
A mother and child
Death can't take away!

Author Unknown

Where is the meaning?

I often feel like god is punishing me/us.  I wonder all of the time what I did to deserve this much pain. I know that Maxie did nothing wrong.  He was perfect.  If you know me, you know I am not at all religious.  I do, however, like the biblical stories and the mystery behind the women in the bible, probably inspired by one of my favorite books - "The Red Tent" and other feminist "midrashim" (Jewish stories told to illuminate parts of the biblical stories that have lots left untold) .  There are so many women in the bible who are mentioned under the most interesting circumstances but their stories seem half told.  For example, there is a story in the bible of David and Bathsheba, who had a baby boy who became sick and died after 7 days.  David cried and fasted and prayed, but the baby died anyway.   Just like we cried and prayed and begged for Maxie to live....just like friends and family around the world did the same.  I can only imagine that Bathsheba curled up in a ball and wished for the whole thing to just be a nightmare, just like I did. ...and god decided not to save Max anyway.  Some say that David and Bathsheba were being punished though, as their relationship began as an adulterous affair.  What are Ted and I being punished for?  I can't figure it out.  Ted says that I am trying too hard to figure out all of the answers to the universe and that nobody has been able to do it before me, so how would I think I am going to figure it out?  I may never have an answer.  David and Bathsheba went on to have another son - Solomon, who became king.  He was said to have been the wisest, most loved king of Israel.  Bathsheba must have been so proud.  I wonder if Bathsheba ever made peace with losing her first little boy.  She must have continued to long for him and the pregnancy with Solomon must have been so hard.  It sounds like King David made peace.  Like, he actually went on to embrace god again.  What boggles my brain is how something like this could bring anyone closer to god, but it does.  I read a LOT of blogs and honestly, the majority of the blogs I read are written by pretty religious people (not because I prefer religious blogs but I think that blogging might be more popular in the religious world?  Not sure.  Just seems that way perhaps).  They talk a lot about trusting god.  How could I ever trust god again?  Even to say, "I trust that this will never happen to us again" feels like I am tempting him (her).  Like I am asking for something terrible to happen.  I always believed in positive thinking but now I often wonder if this was god's way of showing us that it doesn't matter how we think, sh*t just happens.  Then I think, I should just think positively then because feeling such defeat all of the time just makes the time pass slower.  I have been making a list of my sins - I can be sarcastic, I am easily annoyed and get impatient a lot.  And, even though I have always had a lot of friends, I am not one of those people that just likes everyone.  Lots of people bug me.  Still, are these reasons to be punished?  Even the pollyanna-church/temple going, no-sinning bloggers have been punished, so what's the point?  I have no answers.  Just lots of pontification.  I will never understand the cruelty of this loss.  The loss of a beautiful, innocent, sweet, loving, and perfect boy who should be here for 80 more years at least.  I am so angry and I long for my Max.  Life is sometimes so unfair.  To be 100% honest with you - I don't really like this life of mine these days...just going through the motions.

Sweet Dreams

I've been dreaming about Max a lot over the past few nights.  Finally my dreams aren't nightmares.  In fact, I have a feeling that they are full of meaning but alas, I know nothing about dream interpretation. Listening to someone tell the details of their nonsense dreams is pretty much annoying, I know, so feel free to skim this post.  I won't be offended.  Two nights ago, I dreamed that we had another baby.  A little girl.  She looked JUST like Max.  I am holding out hope that we are the type of parents that can make all kids that look alike.  Ted's parents made two pretty similar looking kids.  My friend Jess and her husband Steve totally make one type of kid.  Their little girl and boy look just alike.  So, anyway, my baby girl looked just like Max.  She was also sweet and smiley and easy.  I kept pressing her face against my face so I could kiss her and smell her.  It was so real.  It felt like Max was back.  I miss him so much.  Of course, I woke up aching for him.  My arms felt empty and I was sick to my stomach.  But, I also felt like it hadn't been so long since the last time I saw him.  Last night's dream was definitely weird.  I kept seeing a 5 year old Max, standing with a black horse.  He was translucent and his image was flickering a bit.  I kept going to him to hug him but I would end up hugging air and then the image would jump a few feet further away.  I was chasing him all over a big field.  From nowhere, another boy showed up and Max looked scared and ran away from him.  I chased after Max as he ran up a staircase on the side of a house and hid.  He was talking to me though and he kept saying that something loved me.  Over and over.  "What are you saying?  I can't understand you Max", I kept repeating.  Then a non-dream like voice, a really human seeming voice said in my ear, "Yoga loves you".  I woke up and could feel the breath on my ear.  Creepy.  And, what the hell?  "Yoga" loves me?  I am not sure I feel the same.  My abs and hips are killing today from a particularly hellish session on Thursday.  If I've got any readers with dream analyzing skills, help me out here.  I guess the most important point is that instead of being scared to go to sleep because I fear nightmares, I am looking forward to sleep these days because I get to be with Max for a little while, if only in my own head.

I know someone else who used to have sweet dreams

New Job

Here is some more news.  I wanted to wait until it was announced inside my organization before I announced it here.  I have a new job.  Going back to work was hard...it never really happened.  I still communicated with many of our donors and I went to couple of meetings but it was terrible.  Going to my office was pretty terrible also.  It's nobody's fault really.  I am sure every parent who has been through what I have been through has also had to go back to work and I am sure it has been terrible for most of them in one way or another.  Some people were really wonderful.  Most didn't know what to say.  Some people were outright offensive.  It is what it is.  As the local Director for a National non-profit my job consists of lunches, coffees, cocktail parties, meetings and events.  Kind of tough for someone who can't get out of bed some mornings and can't get off the couch most days.  I figured I would probably just get fired and while on the one hand, it was causing me a tremendous amount of stress, on the other hand, it was nothing compared to the loss I had suffered when Max passed.  Nothing mattered anymore.  But, I started to think that maybe there was another way for me to help my organization and I started coming up with a list of things I could do.  When I finally spoke to my boss a few weeks ago, he told me he had been coming up with a list of his own.  Our lists were very similar and we put them together and within a week finalized a new job description for me.  I am now the Director of Grants Management and Major Donor Research for JNF.  This has been a tremendous weight off our shoulders.  By the way, I need to mention that my wonderful husband, who would have been burdened with being the sole provider, continuously told me that I didn't need to worry.  We would make it work.  That money is not what is important.  He supported me in my uselessness and I love him forever for that and for everything else that makes him so wonderful.  My new job can (and will) be done from home and I am actually excited about it.  I want to do a good job in part because I am so grateful to have been given this break.  Lord, I needed a break already.  Obviously, I MUST thank Russell Robinson, my boss, who said he would walk beside me and actually has.  When he could have easily just written me off, he decided to find a place for the new, broken me, and make me feel like there is a place, where at least for a few hours a day, I can be more whole.  There have been others who have said that they would be with me and have disappeared, but he hasn't and I am so grateful.  My whole family is grateful.  Thank you so much Russell and I hope to show you that you made a good decision.

Helmet Babies

I just left my therapist's office.  I think I mentioned that her office is located in my yoga studio.  As I was leaving, I ran into a woman who was early for the mommy and me class that starts there at 12:30.  She had a little sleeping baby with her in a baby carrier.  He was probably about 7 months old and wearing a helmet, like Max had.  I wanted so badly to tell her, "My baby wore a Doc Band too!".  But, of course I can't.  She would then probably ask me how my baby is doing now and I would have to say that my baby died.  I can't bond with the Doc Band mommies anymore over the cutest little babies in helmets.  Of course, just seeing the little guy made my heart hurt.  It would have hurt even if he wasn't wearing a helmet, but, the helmet adds a layer of pain.  Here are some photos of Maxie's helmet before Teddy made it extra awesome with craftiness.  It was even cute when it was just plan white.  Max wasn't even three months old yet when he got his helmet.  He couldn't even sit up by himself. 

He has that "What you talkin about Willis" face on again in the photo above.  I want to mash my face into the photo and nibble on his cheeks.

This photo must have been taken after it really settled in that he to keep wearing this thing.  He looks sad :(  Poor Maxie. 

I am able to see from the back end of this blog what search words people are using to find Maxie's blog.  Usually people search Max Leviss or Maxwell Judah Leviss or Maxie blog or some combination.  Sometimes they are searching for SIDS + Blog.  I know I must have typed in SIDS + Blog a thousand times before I started to finally find the blogs of people who are going through the painful experience that I am.  Sometimes people are typing DOC Band....and that makes me extra sad.  They have probably just been told that their baby has to wear a little helmet and they are scared or nervous (I know I was), and then they get my blog and it probably makes them even more nervous.  I was actually told that the helmet would help prevent SIDS because it would ensure a safe breathing space between Maxies face and a mattress (or blanket or boppy or anything else that shouldn't have been in the crib with him).  To those parents I would just say, Maxie was long out of his helmet by the time he stopped breathing at daycare.  I don't want them to worry.  Max (and our whole family) was part of the miserably unlucky less than 1% of children who die of SIDS and it is unrelated to the helmet or anything else.  We were just not blessed the way we should have been with a baby with a long, long life. 

I miss you little Maxie.  I miss you more every single day and for different reasons every day.  Today I miss you in your helmet phase.  I miss how it framed your perfect little face and gave you a little edge.  I miss how it perfectly rounded out your little head.  I miss how tiny it was and how it brought us so much closer to you and gave us more reason to love and adore you (like we needed any more reasons).  I miss every thing about you monkey.  Today and every single day....I love you Max.