It gets tougher every day

The Sunday evening before Max stopped breathing, I had a meltdown of epic proportions.  I literally sat on the couch and cried to Ted, while he tried to console me and held me.  I could not stop crying.  It was something that hadn't happened in this way before that night.  Not that he hadn't had to console me while I cried.  It was just that this time I was more upset than I had been in a long time.  We had just finished a particularly lovely weekend with our baby and I so loved being with him all day long.  We went to a first birthday party for Ted's boss's son on Saturday which was really nice and got me thinking a lot about Max's upcoming first birthday and how we might celebrate it.  There was a little bubble machine at the party and we sat in the grass with Max and a couple of other children and played with it.  It was the first time Max had seen bubbles.  He didn't know what to make of them but he was smiling and watching them breeze around his little face.  He was on my lap most of the afternoon or in his daddy's arms.  On the way there, he napped in his car seat while Ted and I killed time driving through Hancock Park and day dreaming out the houses that we would someday live in.  We met some nice people at the party and talked about babies and baby stuff.  The next day, Bianca, her husband Ethan and their three children came over for brunch.  Charlotte, their oldest, politely sat on the couch and watched some children's programming.  Their twin boys eagerly played with all of Maxie's baby stuff.  We stood and sat around our kitchen bar area and laughed about parenthood and showed off our Max.  His best move was when he went from totally engaged and awake to napping in about 5 minutes flat.  My kid could keep a schedule like nobody's business.  With the weekend winding down and a whole week before I would get to be with Max again, I was feeling so sad.  Additionally, I would be leaving Ted and Max for a long weekend in 2 weeks to go to a staff conference while they attended Ted's family reunion in Zion, Utah.  I was looking forward to the conference, but totally anxious about 5 days away from my baby.  Plus, I wanted to be with them and all of the cousins in that beautiful place.  I cried my eyes out that night.  Balancing motherhood and a career was proving to be so challenging emotionally.  I hated missing my baby all day long.  It was zapping the life out of me.  I know this is what every working parent deals with but it was new to me, as parenting was still new to me, as Max was only nine and a half months old.  I have wondered since that time if this was the universe's way of telling me that I didn't count my blessings enough.  I DID!  I actually did know how good I had it.  I just wanted to be good at everything.  I wanted to continue to be successful at work but I felt like I could not get enough time with my baby.  Then people would invite me to things without Max on the weekends and it was just more time away from him.  And sometimes I would have to work on weekends or in the evenings...that is my job.  It isn't like I am or was complaining, I just missed Max.  I just missed him.  All day long.  I know that I am not important enough to have been the spiritual cause of this catastrophe.  There is no way that g-d was trying to teach me a lesson.  But, in retrospect, the timing is just unbelievable.  It's been 103 days without Max.  I cry like I did that night every single day now.  I wanted to be good at everything and now I am good at nothing, unless you count crying and sitting on the couch.  I missed my baby being away from him during the day, but at least I had him for a few hours every morning and night.  If you think that time is supposed to be healing this, you think wrong.  I miss him!  I miss my baby!  I miss my Max!  I am in agony and it is so unfair.  And, if you think this is something unique that I am feeling - ask my husband if it is getting better.  Ask my mother, my father, Max's cousin Mandy, Uncle Paul, Gigi, Auntie Beth.  Ask anyone who knew and loved Max.  It gets tougher every single day.  Every day is one more day without the love of our lives.  It gets tougher.

My Cuddly Max

Maxie was a cuddler.  He was warm and sweet and loving to everyone who wanted to love him.  I wanted to share these photos of Maxie that I love.  One photo with me, a few of Maxie with Ken (K-pa), my mom's boyfriend, and a few with our friend Rob.  This is exactly how I picture myself with Maxie before I fall asleep at night.  It is why my arms feel empty all day long.  I miss him so much.

Why My Max?

Oh Lord!  I miss my baby with something so fierce today.  I can't even imagine how I am still here without him.  Let me tell you some stuff about Max that I am sure I have already told you.  He was a GOOD baby. He smiled all of the time.  He was such a good sleeper and napper.  When you walked into his room in the morning, his little face would immediately turn on a great big smile.  He was a good eater.  He was smart (and I know this to be true!).  He was the cutest thing I ever saw in my whole life and he got cuter every single day.  Everyone loved Max.  He was popular at daycare.  He was the apple of both of his cousin's eyes and he had doting grandparents, a loving auntie and uncle.  His mommy and daddy could not believe how lucky we were that he was the baby we made.  We talked about him and how wonderful he was without stop.  We were completely over the moon. Every day, I sent photo updates of him to our entire immediate family.  I wanted to make sure that his East Coast family could follow along as he developed and grew in cuteness. At the moment that I got the phone call from daycare that Max had stopped breathing, I was in the middle of posting his most recent photo to Facebook.  This is the worst form of torture - knowing that I will never have him in my arms again.  It makes me beyond crazy.  I am SO scared about our future.  So incredibly scared and I can't even get into EVERYTHING that I am scared about because there is so much.  When I think about it all, I get so overwhelmed, I throw myself into a panic.  Exactly the reason I am supposed to be living one minute at a time.  As much as I hate it, I know it is a rule I have to start following because if I even start to think about one day more without Max, I lose my mind.  Max had the most beautiful eyes - "as big as Eskimo Pies", is what my dad used to say.  He would look right into my eyes, the way most adults will not.  I could stare into his eyes forever.  Oh man, I am so sad.  I miss this boy with all of my heart and I am crushed.  This isn't the way it is supposed to be.  I can't stop asking the question, even though I know there is no answer - Why MY Max?

Taking Maxie to work

My co-workers always used to ask me when I was going to bring Maxie to work.  I wanted to share him, because he is adorable, but I knew that bringing Maxie to work meant that I wouldn't actually get any work done.  Still, I did want to bring him with me one day and it was a good excuse to spend an extra day with Maxie.  I hated being away from him.  Anyway, I can't remember exactly when I brought him, but it was a day before a holiday and there were a lot of people out of the office.  Those who were there, properly "ooo'ed and ahhhh'ed" at him and I think he did a really good job being extra cute.  I always joked that if I ever brought Maxie in, our Campaign Executive's job description would have to change for the day and she could be a nanny.  She was the one who most asked for me to bring Max in, so it seemed fair.  So, that is what happened.  Carly spent an hour or two hanging with Max while I checked emails.  That was about all I got done that day.  Maxie was not the kind of baby that you could just hang out with and not pay attention to.  He would make little noises and get fidgety.  He wanted his mommy's attention and I loved nothing more than to give it to him.  There are photos of Max all around my office.  I have a corner of stuff that is waiting to come him with me for him, children's books, a little toddler chair, a big bag to store toys in.  My office sits empty, since I haven't been there much in these past three months.  There is so much proof of the nine and a half months that I got to be a mother to this extraordinary little boy.  I feel him in my soul and yet I cannot find him anywhere.  This is a photo from the day Maxie came to visit.  A day, like every other one, that was very special to both of us.

One breath at a time

Thursdays just suck.  Every Thursday is one more week since I last saw Max.  Plus, my housekeeper comes on Thursdays, so I try to get lost.  My housekeeper and I always had a rather contentious relationship.  She wasn't sure that her job in our house was to clean, I always reminded her that, indeed, that was exactly her job.  Whenever she used to see me at home when she got there, she would roll her eyes.  That is, until the day when Max was home with me.  Not sure what it was, but they had an instant connection.  He was flirting with her and she was peek a booing back with him and I was trying to feed him and I just gave up because he was so much more into her than his yams.  After their first love connection, she really warmed up to me and whenever she came over, she would talk to me about Max, asking questions and talking about how cute he was.  Every few weeks, he would be there when she got there and the two of them would go at it again.  I warmed up to her too.  Anyone who loves my son can do no wrong.  The Thursday after Max died, my housekeeper came over and saw me in the house.  She got a big smile on her face because she thought Max was with me.  I should have called her but it was the last thing on my mind.  When she came in she beamed, "Where is the baby?" and I had to say, "the baby died last week."  Sickening.  Her face went white.  She sped to his room and looked inside, as if I was joking and he would be sitting there.  She looked around and saw the gigantic posters of Max all over our living room and she slumped to the floor crying, "No puedo creer!  No puedo creer!" (I can't believe it), she screamed.  I could barely stand myself and found that I began to comfort her (as I did with so many people in the weeks following Max's death.  Totally bizarre, but I found myself comforting the people that loved Max instead of the other way around in a lot of cases).  All I could say to her was, "yo tampoco" (me neither), because, of course, I STILL don't believe it.  She still cleans our house, I get lost because I can't handle her grief.  I am having too much trouble dealing with my own.  Usually I come over to my mother's house and work and read over here.  My mother left for El Salvador and Costa Rica this morning at 4 am.  I knew the house would be empty.  I drove in the gates and parked my car, walked up to the house, opened the door and set off the alarm.  It is LOUD.  I couldn't call my mom because she is in Central America, my brother wasn't answering his phone.  I tried all of the combinations I could think of but my heart was beating through my brains and I thought I was going to pass out.  I guess there has been a rash of burglaries in the neighborhood recently.  I hadn't thought to ask her for the alarm code because I have never had to use it before.  Thankfully, my brother finally called me back with the code.  Not really related, but actually related in my boggled brain (try to stay with my stream of consciousness for a minute if you will), yesterday morning I woke up at 4 am and smelled gas in our room.  I thought it was my imagination and tried to go back to sleep but it really smelled like gas.  I couldn't figure it out and I am not sure why I didn't get up and start checking around but for some reason, I convinced myself that I was imagining it.  Finally, around 5 am, I went into our bathroom and heard a sound like the air coming fast out of a balloon.  I opened the door from our bathroom that leads to an outside storage closet and found that gas valve on the side of the house open and shooting gas.  I have no idea how long it was like that but it scared the living daylights out of me.  I KNOW that even if you haven't had a child die, you can relate to those times in life when if it isn't one thing it is another. It seems like it has been that way since Max died.  Obviously, every other thing that has happened, on its own, would be regretful or a set back or an annoyance, but somehow in the shadow of his death, it all seems so much worse: Ted's insect incident and all of his poison oak, my mom's broken arm, my brother's cat died (which wouldn't have been so bad, afterall, he was over 20 years old.  But my poor brother came over to my mom's while I was here one day and had to dig the hole in our pet cemetery and bury the cat by himself.  It was sad to watch), my miscarriage.... blah, blah, blah, you know the story.  All of the grief experts say that all I can do is "take one breath at a time".  Living one breath at a time is agonizing.  I am the type of person that used to make lists of potential upcoming vacations and count down days and get excited about seasons and holidays before they even arrived.  Now I am living one breath at a time, and I am just getting started.

Representing and in Solidarity with Ted

Teddy grew up in Fairfield, CT.  It is a beautiful town with trees everywhere and a lovely beach and quaint stores.  Everywhere you go, you bump into people you know.  The friends that Teddy made growing up in Fairfield are still his very best.  They are an awesome group of down to earth people who like to have fun and are incredibly loyal.  They are all connected and probably more than half of them married other people within the group of friends.  Even though I am an "outsider", I have always felt right at home with the Fairfield crew.

Right after Max died, we heard from so many of Ted's friends.  They sent emails and cards and posted well wishes on Facebook.  A few of them flew out for the funeral and for a night or two of shiva.  You can tell that Ted is a well loved guy in his hometown, as well he should be.  Ted is salt of the earth.  I have felt terribly about the fact that we live in my city, close to my family, near all of my friends.  Not that Teddy complains at all and to be sure, my friends and family have completely embraced Ted.  It's just that when you are going through something this hard, you want to be with the people who know you best.  Ted is a GUY.  He isn't necessarily looking to express his sorrow to his friends either.  He is pretty private (unlike his wife), but being close to the people who you are most comfortable with is comforting.  Ted's friend Chris Barry came to LA for Max's funeral and stayed with us for a few days.  He had never been to LA.  I kept offering him my car to go to the beach or see Hollywood Blvd., but he insisted that wasn't why he came here.  Instead, he cut bushes with Ted on the side of our house and helped keep our kitchen clean.  I know it meant a lot to Teddy.

A couple of weeks ago, Ted got together with a few guys from the high school crew to watch a Giants football game.  I sort of wondered if they were going to talk about Max at all or just not mention him.  Not that they aren't terrific guys, just that guys are guys and they don't talk about uncomfortable stuff.  I know that either way, Teddy was just happy to be in their company, watching football and taking a break from the grieving.  As it went, the guys had gotten together and got Ted this:

Guys don't really need to use words to express their feelings.  Ted sent me this photo in a text, I cried.  It is so perfect.  This week has been particularly hard for Teddy (I asked him if it was ok for me to write about him and I think it is ok that I am saying this).  My numbness has been wearing off quicker than his so he is hitting some of the really low points I have been in for weeks.  It breaks my heart seeing him in pain.  I know he feels like he needs to be the strong one.  He is like Atlas, holding the weight of the world on his shoulders.  It is too much.  My husband doesn't deserve any of this.  He is one of the world's best people and I mean that from the bottom of my heart.  Yesterday he came home from work and we sat on the couch and he talked about t-shirt sales and Beth's fundraising page and then he signed on to Facebook to show me something.  A bunch of the Fairfield crew had replaced their Facebook profile photos with the new Team Maxie logo.  His friend Kyle replaced his profile photo with a photo of Ted's "Maxie" tattoo.  Guys and girls, both, using representations of Maxie instead of their own photos without even telling Ted they had done it.  By the way, they don't all still live in Fairfield, but none of them live in LA.  I don't know who started it or when it started but it is really special and I know it made Ted feel really supported by his Fairfield peeps from all the way out here in California.  We love you guys!  Thank you.

Maxie es un primi

Maxie came into this world a month before his due date.  I will thrilled.  I had a pretty mellow pregnancy but that last month was SO uncomfortable.  I thought I was going to pop, plus Max was sitting PRETTY low.  I am so grateful for that extra month we had with him.  He was 4 weeks early, which isn't really considered to be premature but the pediatrician kept telling me not to worry that he would be about a month behind his milestones.  By the time he reached 9 months, he had basically "caught up" anyway.  We used to take Maxie to the zoo a lot just because it is down the street and I really like the gorillas.  He obviously was not old enough to appreciate the animals, although a few weeks more and he would have been able to see a lot more.  Prima Sharon came to visit in December of last year, Maxie was only 2 months old.  We sat in one of the monkey areas with Max for a long time while I gave him a bottle and bounced him and we made up this song about him.  The words are "Maxie es un primi, Maxie es un primi, Maxie es un primi, es un primi baby boy! Hey!"   Ted always thought we were singing "Maxie is suprema, Maxie is suprema..." He liked that version much better.  So, without further ado:

Also, I have a jpeg of the T-shirts.  Thank you to everyone who has already placed their order:

If you can't read it (maybe too small)...Toddler and short sleeves are $30 and long sleeves are $40.  All of the proceeds go to Maxie's forest.  Thank you!

Looking for your support!

First of all, I want to thank so many of you for writing me after my I posted my letter to "Anonymous".  You confirmed that you too felt this grief after experiencing similar (and sometimes dissimilar) losses, you told me that it was disgusting that I felt like I needed to defend myself, and you agreed that grief is not a nice little package that you can wrap up and put away.  I am in this grief every single day.  I cannot escape.   Not having Max and knowing all of the wonderful things he will miss in this life (including all of the love that I gave him and planned to continue giving him) is excruciating.  While I really value your personal messages to me, I urge you to "go public" and post them to my blog.  I hope that other people will visit my site and know that they should not be afraid to feel exactly how they feel, that what they feel is normal.  Your encouragement means the world to me but don't be afraid to share it.  I think I probably would feel safer posting a comment like the one "anonymous" sent if I knew that there would be some public support as well.  There has been a debate about whether or not "Anonymous" is someone that I know.  I thought that for sure it wasn't but it seems most everyone else thinks it is.  The truth is that I have received personal emails that were also very unsupportive, telling me it is time to move on and wondering why this is so hard for me.  They were a little less mean spirited, probably because the senders were not allowed to remain anonymous.

This brings me to the point of what I wanted to write about today.  You may have seen that I posted the link to The Parental Bereavement Act on my Facebook page.  I also included this article.  (You can click on the links for the information).  I have explained how kind the CEO of my organization has been to me and I cannot explain how difficult going back to work would have been.  I was "encouraged" by some in my organization to return to work a week after the funeral and I put it off.  That next week, Ted was in the hospital for 3 days and I was out of my mind.  I got more "encouraging" phone calls to return to work that following week and I felt that I had no choice.  So, I decided to go in on a Tuesday (I think) and I brought Prima Sharon with me because she happened to still be in town.  I am told that someone advised everyone in my office to treat me "as normal as possible".  So, instead of people coming in and putting an arm around me or saying how sorry they were or treating me like someone whose baby had just died, people greeted me as if I had just come back from a Hawaiian vacation.  I recognize that some people were just awkward and don't know how to act around someone who has experienced such a great loss.  I know that to be especially true for young people, but I got the same strange excited and bizarre cheesy smile from people who I know have lost parents and who have children and grandchildren themselves and had to have had some understanding of how incredibly miserable I was.  Anyway, the experience was unbearable.  I was there for three hours and felt like I was going to throw up the whole time.  My heart was racing, my palms were sweating, my anxiety was through the roof.  I had to get out of there.  I have only been back a few times since and while the gigantic grins are gone, the pain of being there is not.  And, let me be clear: it isn't that work is the problem for me, it is that being anywhere out of my house is the problem right now.  Watching the world spin around me, while people barely acknowledge my suffering, and trying to feign interest in anything at all, is very challenging.  It goes for "fun" things too, like a yoga class or going out to eat.  I felt empowered to go out to sushi with Ted on Friday night and got all dressed up for the first time in a long time (such a change that when Ted came to the door he said, "Well, look who it is!").  We walked into the restaurant and parked at the first table next to the front door was a little snap and go stroller and a baby of about 6 months.  I had the same anxious reaction out to dinner Friday night as I did when I went to my last board meeting.  I thought if I didn't get out, I would drop dead.  Still, I want to mention that for many people, going back to work is the one thing that gets them through this horrific experience.  I know that work is an escape for Teddy and he can mostly turn the grief off while he is there.  I think it partly has to do with a persons personality, partly with their gender, and partly the nature of their work.  For MANY of us, waking up each day, our first thought is, "I can't believe this is my reality" and in my case, "I have to live another day without Max".  For many of us, getting out of bed each day is a challenge.  It has been just over three months since Max died and I am no less sad today that I was three months ago.  In fact, the reality of living each day without him is so much worse than I ever even imagined.

The Parental Bereavement bill recognizes that this is a common experience for parents who have lost a child.  The bill expands the Family and Medical Leave Act to allow grieving parents to take up to 12 weeks without worrying about losing their job.  As you know, 12 weeks later, I am not "cured".  When Max was born, I took all 12 weeks of FMLA time to bond with him.  Many of my colleagues and donors were incredulous that I would take all 12 weeks.  I guess something that they hadn't known about me before is that my family is actually more important to me than my job.  I am not saying that my job isn't important.  What I am saying is that my family comes first.  I have always supervised my staff that way as well.  A crisis in their family or a sick child or husband has always been more important to me than keeping track of the exact in and out time of the people who I supervise.  Work is work, and even when it is incredibly important work, I truly believe that the health and welfare of ourselves and our families is more important.  The 12 weeks that I spent with Max were SO important.  I can't imagine I would have been very productive had I gone back to work earlier anyway.  I would have been exhausted and thinking about him all day.  When I went back, that proved to be the case.  My first week back, I sat in my office and pumped about 8 ounces of breast milk directly into my lap - I forgot to attach the bottles to my pump and closed my eyes because I was exhausted and didn't notice what was happening until I heard the drips.  I then went, with a wet skirt (I tried to mop it up with paper towels), to a luncheon with about 15 members of my Board of Directors and a member of the Israeli Knesset (Parliament).  A week later, I fell asleep at the wheel of my car while driving down Wilshire Blvd to a board meeting.  Bereavement proves to be an even LESS lucid time.  All of my thoughts center around Max.  I cry for hours at a time.  My whole body hurts and my brain feels heavy.  I also have major social anxiety and anxiety in general.  To be frank, I don't know what will happen with me but I am fighting for my life and that is taking up all of my strength.  To give a parent 12 weeks off to bond with their new child is important and I am grateful that I had it.  To give a parent 3 days off (the standard) to grieve their child is inhumane.  I know that nobody can "imagine" the grief, but take it from a griever (and all of the many grievers that support this bill), it is horrific.  Again, you can click here to register your support.

Also, I promised Ted that I would tell you about the "Team Maxie" T-shirts that we are selling to support Beth's marathon run and Maxie's forest.  If you email me by clicking my email address link and tell me what size/s and quantities you would like, we will let you know where you can send your check. In the next couple of days, my friend Suzy might enable her website so that you can pay by paypal there as well.  We have short sleeves, long sleeves and toddler sizes.  (blogger isn't letting me post the pdf of all of the styles and the front but see below for an image of the back and I will figure out how to get the full display up here soon).  All proceeds go to support Maxie's forest.  Thank you so much for your support.

Screen Savers

We've all got pictures of Maxie as our screen savers.  Every time I want to look at my phone to see the time, I see my beautiful boy's face.  Every time my mom wants to check her calendar, there he is.  When my mother in law gets a call, the phone lights up with Maxie.  When you send Ted a text, the message is imposed on Maxie's picture.  I remember waking up in Lake Arrowhead after my most terrible nightmare and checking the time on my phone and seeing Maxie's face.  First love and then sorrow rushed through my entire body.  While Prima Sharon doesn't have Maxie as her screen saver, she has many photos of him on her phone.  My skin crawls thinking about her telling me that someone she knows asked, while looking through her photos, if these were photos of the baby that died.  When she answered, yes, the "friend" said she should delete them.  Some day someone is going to ask me if the baby on the phone is my son and I will answer yes and they will say how cute he is.  I just hope they don't ask me how old he is.  I am trying to figure out what my response is going to be to the questions from strangers about whether I have children, and then when I am pregnant, is this my first, and when I do have more children, how many do I have.  I like to think that I will always say yes and then include Maxie in my count.  How could I not?  Other moms have told me that sometimes they just tell, and other times, they just don't have the energy to console the poor person who asked and then feels terrible about having to hear that their baby died.  Recently my mom's phone lit up and a woman said, "What a beautiful baby!  Is that your grandchild?"  My mom just thanked the woman and said yes.  Seems easy enough.  The fact is that none of this is easy at all.

Grandma Susanna's screen saver.  The photo was taken in her bed while Maxie was watching cartoons and took a little pause to give her this sweet look.

My happy boys (my screen saver).  This photo breaks my heart.  It reminds me of our happy days.

Teddy's screen saver.  This photo was taken of Max in his stroller on our trip to Costa Rica

You can't go there

"If a mother is mourning, not for what she has lost, but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created.  And it may be a comfort to believe that she herself, in losing her only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy Him forever'. [It may be] a comfort to the God-aimed, eternal spirit within her.  But not to her motherhood.  The maternal happiness must be written off.  Never, in any place or time, will she have her son on her knee, or bathe him, or tell him a story, or plan for his future, or see her grandchild" - CS Lewis, A Grief Observed

What I feel is NATURAL.  To feel an enormous loss as I do is what any parent would feel because our present and our future has been ripped away from us.  It is EASY for you to judge me from where you stand.  But, I DARE you, FOR ONE MINUTE, to consider that it was YOUR child that died and not mine.  I don't need to ask how it feels to consider this thought because I KNOW that you would NOT dare to consider it. AND, if your judgment comes from a home with no children, you have no place from which to even begin to judge.  ONLY if you have been where I have been.  ONLY if you have too lost a child.  ONLY if you know this heartbreak, will your words have any bearing on my heart.  I have spent countless hours reading about, speaking with, and listening to women who have all been in my shoes.  What I KNOW is that no matter how PAINFUL this is....and it is painful on a level that is ALL CONSUMING....I am exactly where I am supposed to be.  

Grief is Messy

I got a comment today that I decided to delete rather than post, because I thought it was mean spirited, not constructive and potentially frightening to my friends and family.  It was posted by "Anonymous".  Way to go "Anonymous"!  If you are really concerned, and if you are someone I know, just write to me directly.  Many people have and I have responded to them.  If you read my blog, you come here once a day and read the thoughts that I have when I first wake up each morning.  You read a little about Maxie and his beautiful spirit, you read a little about our life after Maxie and the things that we are doing, you read about my grief and the very tough emotions that I am grappling with.  You will never know everything there is to know about my Max, you will not know all of the activities that we participate in, you will certainly not have the full picture of the complex emotions that surround my grief.  Some days my posts are especially dark and on those days, I find it hard to get out of bed because my sadness is so consuming.  Other days, I have a full schedule of activities.  Here is something that I want to make clear: You do not know me because you read my blog.  I could try to write really clean and sunny pieces just about the light and joy that Max brought into our lives but I decided when I started this blog to write honestly because grief is messy.  I have not been on this journey very long but I have found that the books, websites, movies and blogs that depict loss realistically have been a thousand fold more helpful to my healing than the "how to cope with grief" guides.  I don't need to read about the seven stages of grief, I am living them.  I also don't need to write about them because "anger", "bargaining", "shock" are just words.  I decided to write about how those feelings actually come up in my journey.  I decided to be authentic and not paint a pretty picture when the picture isn't pretty.  Anonymous, I can tell by reading your comment that you have never experienced traumatic loss with accompanying post-traumatic stress disorder and complicated grief.  I hope that you never ever have to.  If, g-d forbid, you ever do have this experience, please know that you can come back to my blog at that point.  I read a number of blogs written by mommies who have been through what I am going through and they are what have given me hope.  I read the journal of my new friend down the street, who also lost a baby to SIDS and it was as if I was reading my own words.  To read something honest from someone who has walked in my shoes and made it to the other side, had more children, found happiness and still managed to honor the memory of their little one is totally inspiring.  It gives me lots and lots of hope.  I am three months in, I just went through a number of "first anniversaries", we feel his absence every morning and all day long.  This is what grief looks like.  I have repeated many, many times, I have no intention of killing myself.  I want to live a long life with my beautiful husband and have many more babies.  I would like to find a way to connect to my child.  I speak to him daily.  I think about him with every thought.  As hard as this may be to absorb, I do not fear death in the same way I once did because there is the hope that I will be reunited with my little love.  But I do not need to explain myself to you, Anonymous. I have said it once and I will say it a thousand more times - my blog is not required reading.  And last but not least Anonymous, thank you for the brilliant suggestion that I seek help.  I will definitely look into that.

In the meantime, if you are just signing in today, please read my post below about reading to Maxie.  I am so happy that I have pictures of his little face totally engrossed in his evening book.

Reading to Maxie

I've mentioned many times how much I enjoyed reading to Maxie and how much he loved being read to.  It was seriously one of the greatest joys I had, even when I was just reading the same 8 books over and over.  I loved the view of Maxie's little head from behind.  He has such a strong neck and could hold his head up pretty well by about 8 weeks.  Until then, I just leaned him against my chest.  He had a birthmark on the back of his head that sometimes you could hardly see and other times got darker.  I loved his little posture and the way that his shoulders sloped.  Best of all was how he really looked so intently at all of the pages in the book.  I would lean forward so I could see his face and see him following along.  One evening, when Max was about 2 months old, my friend Sigalle came over and got here right at the end of the evening routine, when I was reading to him.  She sat on the end of the bed in his room, looking at him from the front and she was giggling and saying, "I can't believe he is actually following along with the book!".  Frankly, I don't know if all little babies do that but regardless, I found it very impressive.  Apparently, she did too.  I remember that she took a turn and read him the "Pajama Time" book....not one of his favorites, but I am not sure that I realized that at the time.  I loved reading "Goodnight Gorilla" to him because it was so colorful and there was so much room for imagination.  I always asked other mammas if they made up dialogue for the empty pages or just let it be silent while baby looked at the illustrations.  I made stuff up.  When Ted was with me, we would switch off turns while all of the animals would say good night and we would make up new voices for each animal.  Nasal voice, angry voice, Kermit the frog voice, girlie voice, soft voice....Max loved that.  Sometimes when we were out and he was a little agitated, I could just say "Good night" in a bunch of silly voices and he would smile at me.  I also liked to give a "shamana hamana hamana shamana" grumble to the zoo keepers wife when she was walking all of the animals back to the zoo.   I have also mentioned how much Max loved "Goodnight Moon".  This book is like baby crack.  I swear, you just read it and all is right in the baby world.  I know it by heart and would always recite it to him when we were out and about.  It definitely made him smile.  I recite it to him whenever I visit his grave.  I whispered it in his ear when we were in the hospital. I hope it gives him some comfort.  Bianca gave me these really basic books that Max loved with pictures of babies and animals.  He especially liked the little boy on the page where everything was Orange.  Whenever we got to "Orange", he would get a look like, "Hey, there is my little friend".  When I read the animal book to him, I would tell him which animals were our favorites so he could know us better, "Frog.....uncle Paul LOVES frogs.   Lion.....Lion is your daddy's favorite animal."  And, even though I don't think Max ever saw Sesame Street, he loved the books with the Sesame Street characters.  He had some wonderful Sesame Street teething toys that were the center pieces at the shower that my stepmother threw for me that her girlfriends attended.  Maybe he recognized some of the characters that way.  He liked to chew on cookie monster (Ted's favorite Sesame character as well).  The book he loved most featured the Sesame Street babies and it was about what helps them get to bed.  "Burt snuggles with a blanky, Elmo has a bunny...."  Max really responded to these characters.  In the last few weeks before he died, I would have him sit facing me so I could watch his face when he read.  He would look up at me and smile once in a while too.  My heart would soar!  Earlier on, I took photos of him looking at his books while I read.  I wanted to see him face on to confirm that he was really engaged.

He is so cute, it makes me crazy!  I LONG to read to my little monkey.  I am dying to move on to some of the books for babies over one.  I am SURE he would still love Goodnight Moon.  Maybe he would be ready for Pajama Time now.  We had started a few books with textures, a fuzzy chick, a rough haystack.  It's all gone.  I just sit here dismayed.  Everything we had together is gone.  He is only in my memories and in photos now.  It will never be the same.  I will never get to start a longer book and read him a chapter every night.  I will never hear him start to read on his own.  It is all over.  All I can do now is continue to read to my memory of him, to sit in his room, or at his gravesite and keep reading his books.  I miss you so much Max.  You were the best little guy ever and I hope you know I cherished every single moment we had together and always will.  I love you Max SOOOOOOO much.


Someone sent me an email not long ago saying that reading my blog was like watching someone unravel.  It stuck with me because it is true.  I am unraveled.  I feel like I have hit rock bottom but I have felt that before and been wrong.  Just when you think you are at the bottom, the ground falls out from under you and you find that you fall even further.  It is hard to imagine it getting any worse than this.  I feel like I have tried my best to do things that I think will make me/us better - acupuncture, grief counseling, writing, reading, getting pregnant (however short-lived that was), walking...  Nothing is working.  I am failing this test.  My brain feels like it is going to explode out of my head and I wish it just would already.  Sometimes I cannot even communicate with my own family.  I get mad when people tell me how to move forward.  I just want to be heard.  I am crumbling.  I am wilting.  There is nothing left of me.  In my worst nightmare, I never imagined my life like this.  I look in the mirror and I don't see me.  Who is this horrible, angry, ugly woman?  It's me.  My aunt sent photos the other day that she took a month or two before Max died.  It is like looking at a completely different family.  We look so happy.  Where do I go from here?

My monkey

From the moment Max was born, he was my monkey.  That was his nickname and that was his mascot.  Whenever someone saw some really good monkey stuff, it was Max's.  He had outfits, and chairs, and stuffed animals.  It flowed off my tongue and I knew that when he was big enough to really notice, he would identify with the little guys who came to visit our deck in Costa Rica every evening.  Sometimes the monkey turned into punky (as in punkin), but mostly he stayed a monkey.  My little monkey. My baby.

Today I am not sure I can get out of bed.  It has been 3 months since Max stopped breathing, 3 months since I did too.  It is still totally unbelievable to me.  Ted says it isn't unbelievable to him.  This is just our life.  This is what happened to us.  This is what happened to our son.  This is what we have to live with.  I guess I am in the bargaining stage.  I cannot accept it to be true.  I would die without Max!  And that is the cruelest part - I didn't die without Max.  I am still here, thinking about my little monkey all day long

What could I have done?

What could I have done differently?  If I was with him that morning, would it have happened?  If I hadn't gone for a bike ride and played with him a little longer, would he still be here?  Was it the greek yogurt and bananas I gave him for breakfast?  When he stopped breathing, he threw up bananas...could it have been them?  Maybe it was because he had started drinking formula?  It had only been a few weeks since I had introduced it and he was still getting breast milk, but could that have been the reason?  Perhaps I should have never sent him to daycare, but I didn't like the idea of him being home all day with a nanny.  I wanted him to be with other kids and he loved it there.  Still, I should have been with him.  Was he not getting enough vitamin C, Iron, what?  I worried about these things constantly, what did I miss?  Was it the vaccinations?  He had a Hepatitis B shot the week before.  I am not sure why an infant needs a Hepatitis B shot anyway.  Was there an abnormality that happened in his brain because of my prenatal care?  I trust my doctor and he told me throughout how great Max was doing.  I know I should have changed my pediatrician.  He was cold and socially inept and very traditional, but he diagnosed Max's jaundice so quick, I thought he was the right choice.  What could I have done differently so that Max would still be here with me?  Did I not police his daycare sleep environment well enough?  All of the other kids there are still alive.  Was his mattress here or there giving off fumes?  Should he have been wearing a monitor at all times?  He was perfectly healthy the morning of July 19th.  There was no indicator that this would happen.  I loved him as much as anyone loves their child.  I was madly in love with him (still am).  If there was nothing that I could have done, how will I make sure this never happens again?  How can I give you advice about how to make sure it doesn't happen to you?  I think about this all day long.  It intermingles with thoughts about where he is now. Does he know how much I love and miss him?  Why my baby?  I can't live without him!  He was so cute.  I loved the way he was in my arms, in his bumbo chair, when he slept, when he was in the bathtub, when he nursed, when he ate, when we danced, when I read to him, when I rubbed his back, when I sang to him.  I think about him all day long and what I could have done differently so that I could still admire all of those things I love about him.

Now you know

If you wondered why I ever left early or didn't come at all, it's because I wanted to be with Max instead.  If you thought it was rude that I left your wedding shower, baby shower, engagement party or wedding early, it's because I wanted to go home and play with my baby.  If you thought I was being selfish about not wanting to put on an event for work that I didn't think had much potential - you were right, I was.  I wanted to be with Max.  If you wondered why I didn't have a good excuse about why I couldn't make your Christmas party, your Halloween party, your Fourth of July you know.  Were you curious why I left book club, or your dinner party before the fun really started?  Now you know.  Remember when you suggested that I bring Max along to go out to eat, get away for the weekend, or meet up at the park?  I was thinking about his naps and his bedtime and that is why I said no.  Maybe you already knew this.  Maybe you didn't understand.  In retrospect, I am more sorry for the time I missed with Max than for the times I said no.  I wish I could turn back the clock and say no to everyone I ever said yes to.  I don't regret doing stuff but I am glad I mostly declined the invitations.  I would give anything for one more hour, one more minute, one more second.  I spend every hour, every minute, every second, wishing I was sitting here watching him sleep or with him in my lap.  Anyway, I've been wanting to explain, so now you know.

World keeps spinning

I can't believe that the world keeps spinning without my Max.  I know that sounds cliche but it astounds me that life goes on for everyone I know (and don't know).  People are still going on vacations, going to parties, having meetings, figuring out their Halloween costumes, dropping their children off at daycare, having dinner parties, getting married, having babies.  I just can't believe it.  My world has been at a standstill for 88 days.  It has been 88 days since I last saw Maxie, last held him, last kissed him, last sung to him, last smelled him (unless you count this morning when I laid down in his room with his dirty laundry and smelled him all over it).  88 days feels like 88 years.  Some days it feels like anything bad that could happen to me, will, and it scares the hell out of me.  Other days, I am just so sad about the void of not having Maxie that anything else that could happen seems like nothing anyway.  I had some hope for a few weeks there about another baby.  I was scared that people would think that I was fixed once they knew I was pregnant, like one baby could ever replace another.  I was and am more scared that this could happen again.  I am reminded constantly that this will never happen again.  I try my best to believe that.  I guess if you believe that it will never happen to you, if you are so confident that you continue to book vacations, figure out Halloween costumes, have dinner parties, drop your kids off at daycare, have meetings, get married and get pregnant, I should believe that my chances for evil are the same as yours, which you believe don't exist.  So, I should try to believe, as you do, that nothing bad will happen (again).  Some days I am better at that than others.  I have more bad days than "good" and good days aren't really all that good to be honest.  As it turns out, October is "Pregnancy and Infant loss month" - that shouldn't be too hard for me to remember, right?  Another mommy who experienced a loss sent me this article yesterday.  I think it pretty much speaks for itself: The Heartache of Infant Loss.

Our Spot

If Max were still alive, he and I would be in Costa Rica this week with Prima Sharon, Grandma Susanna, and our friend Rob.  It was a trip that we were SO looking forward to!  It was going to be a trip to celebrate Max's first birthday and a trip for me to have lots of mommy and baby time before I planned to leave for Israel (in case I didn't make it obvious, I am not going to Israel either).  I was really excited to sit on the beach, in our spot, for a week, snuggling, playing, and reading.

The last time Max and I were in Costa Rica with Teddy, Auntie Beth and Sadie, we went down to the beach on our first day there and set up camp right in the spot where Ted and I got married.  I loved the fact that I was relaxing in that exact spot a year and a half later with Maxie.  Everyone did a lot of swimming and playing in the sand.  Max and I mostly sat on the reclining chair, him leaned up against my bent knees and stared at each other, relaxing and making silly faces.

Look at this boy.  He is an angel.  He is in my soul day and night.  I am supposed to be THERE with HIM right now.  NOT sitting here wondering how my beautiful life fell apart.  Will I ever see him again?  Will we meet in heaven?  I am having a hard time with the unknown, but I NEED to kiss this face again.  Until then, I will spend every minute wishing that he and I were sitting together in our spot.

Maxie's Bris

A year ago today, we came together in Papa Chuck's backyard for Maxie's bris.  I worried so much that Maxie would be hurt.  I wasn't sure I was comfortable with the whole practice but I knew that it would link him to his ancestors for centuries.  Maxie was an amazing baby.  He hardly made a peep.  The Moyel told me that the way a baby reacts to his bris is an indicator of his future disposition.  Further proof that my Max was going to be angelic.  I cried through the whole ceremony.  Not my baby!  I wanted him to feel no pain.  So many people came to the bris to admire him and congratulate us.  I felt so proud to be his mommy.  I felt so proud to be Ted's wife.  I felt so lucky to have my little family.  Max slept the whole night, mostly in Grandma Susanna's arms.  She looked over the moon, as we all did and we were.  I sometimes wonder if the universe or g-d feels any remorse.

We are a family!

Gigi carried out her grandson and handed him to the Moyel

Teddy's Uncle Rich and Aunt Ellen sent these "Max" cupcakes

This boy is so beautiful!

Look behind Ted.  You can see Papa Chuck looking proud in the background.

The photo above was our favorite moment of the evening.  Max's Hebrew name, Yehuda, was declared out loud as he was held up to the sky for everyone to behold!  We loved that moment and talked about it for weeks afterward.

Max sleeping with Grandma Susanna and Teddy's Aunt Jan