The roller coaster of grief

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

The evolution of friendship

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

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

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

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

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

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

Heaven in my lap

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

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

Our meeting with the geneticists

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

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

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

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

No past, No present, No future

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

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

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

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

Sunday Field Trip

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

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

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

My dream

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

The waiting game

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

Deliver me!

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

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

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

An edit

Nothing really surprises me anymore.  So, when I just read an email from the author of a book I quoted and cited, asking me to remove the content from her book.  I just went back and deleted it.  It's funny because I actually remember thinking that the book would be tremendously helpful to folks facing not knowing what to say in tough situations and that hopefully, if enough people read my blog down the road, they would also buy her book.  I have used this space from time to time to tell you my thoughts on what to say and not to say but the response hasn't always been good.  (Actually, the response is always good from other bereaved parents - except once - and it is generally less good from everyone else:  Bereaved parents knowing what would help them to hear and the rest of the world still so reluctant and uncomfortable to say those words that could be helpful).  I have quoted many books and linked to many websites.  Hopefully, this will be the one and only that I have to go back and delete content from.

In the meantime, here's to hoping Joe Biden doesn't come after me for posting the following clip, which was posted in the comments section of my blog (thank you John).  It is Biden's address to a group of families of fallen soldiers, though in many ways, it felt like it could have been directed at any parent who had lost a child: Joe Biden's address to Goldstar Families  (give it a few seconds to load...I promise it is a very short clip)

The Dark Side

Some days it hits me so hard, I don't think I will make it one more minute, let alone a lifetime.  Yesterday was one of those days.  My instinct was to get in my car and drive as far as my car would take me.  To leave my life.  To escape.  But, there is nowhere to go.  I am stuck.  I am stuck in this body, with this life, that doesn't include my baby boy.  In my agony, I found myself in hysterics on my bathroom floor, in a pile of my own drool, eight months pregnant, begging god to have mercy on me already.  I want my baby back so badly. Some days, I completely unravel.  It often takes weeks to put myself back together and then, I am only good for a few days really.  I worry about being this honest with you.  But, this is what it sometimes is.  The dark side of losing a child is indeed dark.

On my self-imposed isolation

Saturday night we went out with friends.  This is something we NEVER do anymore.  Literally.  Earlier in the day, I went with my friend Suzy to get massages (I found the best pregnancy massage ever in Burbank a few months ago!)  Then, in the evening, Ted and I went out with Suzy and her boyfriend Spencer (both close friends of mine from high school).  It almost felt like a normal night out with friends...something that hasn't sounded like a "fun" thing to do in months but actually ended up being fun.  Ted wanted to try a new brewery in Burbank.  They have indoor and outdoor seating and it is in a cool warehouse nearby.  It seemed like a perfect activity...until we got there and found more babies than I have seen anywhere in ten months.  No joke.  I counted 10 babies between the deck and the inside space.  Little graco carriers everywhere.  More babies than I see at the yoga studio when I happen to be there when the mommy and me class is lining up.  I was actually up for braving it but the others made a group decision to leave.  It was probably the right decision.  On our way out, we bumped into Paul - my brother!!!  Kind of funny.  He was there celebrating one of his best friends birthdays.  We chatted with them for a few minutes and then continued on to a saloon in Burbank where Ted and I went a few times while I was pregnant with Max and where we have been a couple of times since losing him.  It is a dive and definitely not a place that anyone would bring a kid.  It is the kind of place Ted and I would have hung out before we were pregnant with Max.  They have lots of beers on tap and really good burgers.  We had a really nice time.  Suzy really has been by our sides since the very beginning of this nightmare.  She and Spencer are very "safe" people for us to spend time with.

Going out for burgers and beer probably doesn't seem like much of an accomplishment to any normal person out there but, for me, it was a big deal.  A few months ago Ted and I went with my mom and her boyfriend, Ken, to a comedy show to support Shawn Pelofsky - the comic that organized the line up for Maxie's benefit.  That was an equally large accomplishment for me.  We went out to dinner, made small talk, watched a comedy show, and laughed about the acts that we saw.  These normal social interactions come easier for Ted.  I know that they come easier for some other bereaved parents.  Some people need these types of interactions just to keep from going crazy.  I have no way of understanding why they are more challenging for me...but they are.  When I am able to let go and enjoy myself, it feels like one million pounds lifted off of my shoulders.  These experiences are few and far between though.  It's nobody's fault but my own.  I generally don't feel up to it.  In the early days, I tried a few times to go out with friends and I woke up the next day feeling hungover from the energy I had spent trying to act normal and make others comfortable.  It was too soon.

When Max died, I was given a copy of "When Bad Things Happen To Good People" by Harold Kushner.  I read the first chapter and wanted to throw it in the trash.  I could tell that the book's premise was going to be that we should not blame god for the bad things that happen to us.  That god's role was to be the figure that we embrace when those bad things happen.  Oh no!  I was too angry at god to read that bulls*@t.  Frankly, I am still angry at god and I still don't accept that theory.  Still, I decided to give the book a second try because enough people have suggested it to me and I am out of helpful reading material.  There is a chapter about depression and isolation that really resonated with me.  I will get to that in a minute.

During the days leading up to Max's funeral and during Max's shiva, it never occurred to me how people would treat us after they went back to their real lives.  For the most part, everyone was so supportive during those first two weeks.  They dropped everything to be by our sides, they cried with us, and helped keep our kitchen clean and put their arms around us and told us how sad they were for us.  I wrongly assumed that people would still handle us delicately when the shiva ended, knowing we were still so hurt and devastated - that just because the official period of mourning was over didn't mean that our grief was suddenly gone.  It was a traumatic experience and a real wake up call when that isn't what happened.  I have said so many times - and I am sorry to be repetitive but what happened was that many people acted like nothing happened.  In fact, it felt like they out of their way to act really really normal.  They went back to trying to gossip with us about the nonsense we gossiped about before Max died.  They stopped mentioning him and our tragedy.  They stopped putting their arms around us.  They wondered aloud when we would start to get over this.  I showed up at work just two weeks after Maxie's funeral where everyone treated me as if I'd just been away on a cruise or something for a few weeks.  Not one word about the devastation that just tore my world apart (except from one person - who did come into my office and put her arm on my shoulder and asked how I was holding up).  People invited me to "come out and play" and see concerts and go out on the town (I guess they figured I wouldn't have to worry about babysitters anymore).  They all meant well but -Holy Moses - it was way too soon and way too much.  Many of them then acted offended when I said I wasn't ready.  I just needed people who would come over and sit with me and talk with me and try to listen to me.  It felt like I was living in an alternate universe.  Was I really expected to be over the death of my son just a few weeks after his shocking death?  As a result, I totally isolated myself.  I was criticized for that too.  I was told that I was "too hard to be around".  Honestly, if you were told that you were "too hard to be around", why would you invite anyone to be around you?  Was the idea that I should lighten up so that others wouldn't have to feel so bummed out to be around me?  My son had just died.

I realized after a couple of weeks that there was no way for anyone to understand just how tragic and devastating losing Max was and rather than have to just fake "happy", I decided to sit home - alone...all of the time.  It felt much safer than being with people.  The strangeness of people feeling like they were doing me a solid by inviting me out but then totally ignoring the devastation I was living through was just overwhelming and nonsensical feeling.  So, I have been sitting at home in the dark for the last ten months.  I have tried to explain my feelings about losing Max and the kind of support I have needed on this blog.  Some people have started to get it a little, most haven't.  Some very unique individuals have understood right off the bat.  I have had visitors - people that I feel safe with for the most part.  People who have let me cry and talk about Max and been with me in my pain.  They have put their own issues aside for the time they spent with me and just supported me.  I am lucky.  I am not sure everyone has people like this.

In his book, "When Bad Things Happen to Good People", Kushner says, "One of the worst things that happens to a person who has been hurt by life is that he tends to compound the damage by hurting himself a second time.  Not only is he the victim of rejection, bereavement, injury, or bad luck; he often feels the need to see himself as a bad person who had this coming to him, and because of that drives away people who try to come close and help him".  Part of the problem, Kushner explains is that the people who come "to comfort us" don't always bring comfort.  He speaks of the biblical story of Job - who lost everything - his wife, his children, all of his possessions.  He says that Job's friends did the right thing by coming to him but they tried to make light of his losses and they explained that there must be a reason for them.  "He needed friends who would permit him to be angry, to cry and to scream, much more than he needed friends who would urge him to be an example of patience and piety to others.  He needed people to say 'Yes, what happened to you is terrible and makes no sense," not people who would say, 'Cheer up, Job, its not all that bad.'  And that was where his friends let him down.  The phrase 'Job's comforters' has come into our language to describe people who mean to help, but who are more concerned with their own needs and feelings than they are with those of the other person, and so only end up making things worse."  I am sure I have been one of "Job's comforters" in my past.  I have had lots of "Job's comforters" try and cheer me up as well over the last ten months.  Kushner goes on to say about our society that "We either stay away entirely, so that the suffering person experiences isolation and a sense of rejection on top of his tragedy, or we come and try to avoid the reason for our being there.  Hospital visits and condolence calls become discussions of the weather, the stock market, or the pennant race, taking on an air of unreality as the most important subject on the mind of everyone present is left conspicuously unmentioned."  It's this "air of unreality" that I have had to avoid.  I am no dummy.  I know that Max was "the most important subject on the mind of everyone" who came to visit us, but it was too hard for me to play the game that everyone else was playing.  My soul was aching to leave this body and join Max in a place where I would't have to feel so unreal anymore.  To save my own life.  I had to isolate myself.

I have wondered to myself if this self-imposed isolation was good or bad for me and I have honestly had mixed feelings about it.  On the one hand, I have been in the deepest pit of darkness for all of this time and I have been there all alone.  The loneliness and isolation have darkened the pit.  On the other hand, I have needed to be there and not with anyone who was going to belittle or ignore this very real grief.  I have needed to sit and reflect on my life, to saturate my soul in my love for Max, to feel every terrible feeling I have felt.  For me, this has been the only way to feel like I could release the pain, little by little, and begin healing.  Having a bunch of people around me who wanted to make everything normal would have been (and was in those times that I couldn't avoid it) more painful for me than just feeling the pain has been.  Everyone has their own path.  This has been mine.

I am beginning to feel ready again to let in a little light.  To open the door to some activity, to some dear friends, to life.  I am taking baby steps.  I can't handle much more.  This is what feels right to me today.  It may not be what feels right to me tomorrow.  But, again, this is MY journey.  You can't force me into rushing it.  Getting out just a little, dipping my toes back into the world has been good for my soul as I have entered a new stage of grief.  I have a long, long road ahead of me but I am feeling more up for the challenge than I have this whole time.  Perhaps it is the promise of my Baby M  - my second little love - coming in just a short eight weeks.  Perhaps this is just how grief goes as you begin to get more used to the constant pain.  I don't know.  What I do know is that if you happen to catch me away from my house - you might find a smile on my face (though you might still be more likely to catch me crying).  That is a small accomplishment for me in this great big tragedy.

Lots of Memories

Daily Thoughts

The sadness never goes away.

The missing never ceases.

The longing for my baby.

The wish that I could be who I once was.

I will never be the same.

You will never understand me.

I may never "get better".

I am doing the best I can.

I want Max back.

I want to hold him and kiss him and smell his baby deliciousness.

I want to make him smile.

I want to watch him crawl and then walk and then run.

I want my life back.

So sad that it is gone forever.

I'm so very, very sad.

His life

He will never play on a playground...like I did.

He will never fall down and hurt himself...like I have.

He will never have a first day of school...like I did.

He will never look forward to summer camp....like I did.

He will never go to a school dance...like I did.

He will never have best friend....like I have.

He will never fall in love....like I have.

He will never graduate high school or college...like I did.

He will never get married...like I did.

He will never have a child...like I did.

He will never see his forest...like I will.

He will never feel soul crushing pain....like I do.

How to say it

I was at my mom's yesterday and found a book that she is reading called, "=====================================".  Since I have been criticized for being critical and it seems like nobody knows what to say and I am not supposed to tell you from my experience what to say and what not to say, I figured I pull a section from the book.  You can blame it on the author.  I still think this is important.  My biggest trigger (which is listed below...as are many of the things that have hurt me as well as many of the things that have been a comfort) is when people act like everything is normal (at work, with family, with friends....especially in the weeks and months immediately following Max's passing.  Like NOTHING happened at all).  I can't even count how many times that alone has thrown me into darkness over the last ten months.  Hopefully, this will be helpful to you if you know someone who has experienced the death of a child.  (By the way, the book has right words for many, many situations.  If you are having trouble knowing what to say to someone in a particular situation, you might check it out)

CONTENT WAS REMOVED FROM THIS POST AS REQUESTED BY BOOK'S AUTHOR

Breathing a little easier

A few weeks ago, my friend Jessica wrote me the sweetest email.  She told me that she had a doula at the birth of her son, Everett, and described how much it helped to calm her and her husband.  She said she had just been thinking about us and what an emotional experience it will be to bring Baby M into this world, not to mention the fact that he is due just a few days after the one year anniversary of Maxie's passing.  She said that if it were something we were interested in, she would give her doula to us as a gift.  It was such a beautiful idea and offer.  Jessica is a generous soul and a loyal friend.  I love her and Steve (her husband) and their sweet family so much.

Though I am not taking her up on her offer, it did give me the idea of calling my high school friend Courtney, who is a doula.  Courtney has taken such good care of Teddy and I over the last ten months.  She brought us dinners on nights that the meal train had none scheduled and has continued to bring us delicious food even since the train ended.  If you know Courtney, you know what a deeply feeling soul she is - her own empathy must keep her up at night.  She is wonderful.  Anyway, if you don't know (and I am still not sure that I do), a doula is kind of a labor coach...or a birth assistant.  Basically, they can help fill any kind of a role that you would like - or, at least, Courtney does.  Jessica brought up the idea of having someone there to advocate for us, which is what sounded most appealing to me.  After my experiences with Maxie's jaundice, Maxie's time in the PICU, and Ted's time in the hospital after Maxie's funeral....the idea of someone helping to look out for us and advocate on our behalf sounds like a total luxury.  I am always "the bad guy" - getting into it with doctors and nurses who aren't treating us like human beings.  I probably get too emotional when it comes to the health and well-being of my family.  Plus, I have had a ton of stress about having to explain our situation to nurses during shift changes or even just explaining why I might get more emotional or upset than other mothers (or at least, more upset than I did last time).  I have worried about having a panic attack, like the one I had in NY in November (thankfully, I have not had one like that since).  Courtney won't be able to stop my panic attack but she will be able to explain our situation to nurses and anesthesiologists who might think I am being overly dramatic.

Courtney came over and brought us dinner on Tuesday night - she makes insanely delicious turkey meatballs.  The last time she brought them, Ted wanted to eat the leftovers the next night.  Ted never wants leftovers (sorry for selling you out honey)!  Anyway, we spent lots of time with her talking about our concerns and fears, asking about various possible scenarios, talking about birth in general (because, even though I've given birth AND taken the child birth classes, it turns out that I know very little).  She understands the process so well and has assisted in enough births by now that the idea of having her with us just makes us both feel very comfortable.  It isn't that I don't trust the nurses with delivering this baby...it's that I don't trust the nurses with my fragile emotional state.  I do, however, trust Courtney.

The peace that has come from my appointment with Dr. D on Tuesday morning combined with our meeting with Courtney on Tuesday night has actually given me the confidence to allow myself to feel excited about Baby M's arrival.  I haven't been allowing myself to be excited about him yet.  The risk has felt too large.  While I am emotionally invested in him, I haven't wanted to allow myself to get invested in our future.  But, last night, after Ted went to sleep, I actually laid in bed with my iphone, looking up the best baby gadgets of 2012.  I allowed myself to think of Baby M playing in Maxie's "office", and in his jumparoo, and I thought about purchasing the infant insert to go in the ergo carrier I bought that arrived the day after Maxie died.  I don't want to get carried away.  I don't want to jinx the situation.  I am so scared of making a wrong move still.  I felt like I should have been "knocking on wood" just for being presumptuous enough to visit the "Babies R Us" website.  But, I also feel like I maybe deserve to be even just a little excited about the prospect of a new baby coming into our home.  Maybe I have been forgiven, just a touch, for whatever great sin it is that I committed?  Maybe?  I am not going to get carried away.  We still have nine weeks left, give or take.  But, I am breathing just a little bit easier this week.  Nothing significant - but, still worth mentioning.  It feels like we just might actually be a family again one day.  

Proactive

I went to see my OB yesterday.  Baby M is doing well.  His head is down and he is measuring a little ahead of his 31 weeks.  He was doing major kickboxing moves inside me all day yesterday.  My doctor was asking how I am doing and feeling with this pregnancy and I broke down.  I am SCARED.  That is the most distinct emotion I feel with regard to Baby M.  FEAR.  Not joy, not hope, not whatever else an expecting mommy should feel.  I feel so much love but it is tempered by my fear.  Dr. D assured me that he thinks he would be feeling the same thing if he were in our position.  He asked me what the other doctors are suggesting that we do once Baby M gets here.  I told him that mostly they tell me to "hope for the best" or "try not to worry".  That blew him away....as it most often blows me away as well.  He said that he thinks we need to be proactive and take Baby M to a hepatologist (liver specialist) within the first couple of weeks of his life.  He said we have to take control and make sure that we are doing all that we can for Baby M, not just praying.  He said to make sure that we get a referral from the pediatrician at the hospital where we are delivering for a hepatologist at Children's Hospital.  It felt so good to finally have someone agree with us and suggest a proactive approach.  I guess the others are afraid of scaring us (or of making a mistake in their diagnosis)...but we are already scared.  Anyway, if you suspected that an adult had something wrong with their liver (or any other organ), wouldn't you get it checked out?  I have not been able to wrap my brain around why everyone just keeps saying things like, "Well, we just have to hope that this baby will be ok".  No.  I am not going to sit around hoping.  This is my baby!  I will do everything in my power to ensure his safety, health and long life.

In the meantime, Ted emailed the geneticists yesterday to see if they'd started the testing (because they would never tell him unless he asked them).  Apparently, they have finished the tests and now they are analyzing the findings.  They should have answers (or no answers as the case may be) for us by the end of next week.

Last night we met with my friend Courtney, who is a doula (more on that in a later post), and Ted said to her that one of the things we have learned from Maxie's birth, life, and passing is that we need to be the advocates for ourselves and our family.  There is nobody who is going to step up to the plate and make sure that you are getting the right care.  Everyone is much more consumed with protecting with own asses (he didn't say that...that is my two cents).  You have to carefully watch what is happening and give directives if you need to and not worry about whose egos you bruise or who you piss off.  It's so true.  This is true with regard to health concerns, the care of your children, the care of your pets, and everything else important.  You are your strongest advocate.

I know that for so many other parents, faith has been the most important thing that has pulled them through and given them peace of mind.  Sadly, I don't really have a faith (said by a strongly self-identified Jewish girl).  I am proud to be a Jew and love our customs and celebrations but god didn't answer my most important prayers and I have never felt like I was given a clear understanding of what happens after we are gone.  If this sounds like a good window to proselytize me, it's not.  My brain just isn't wired to accept some other religion either.  They all sound equally like good human guesses as to how the universe works.  And, my Jewish upbringing is probably what keeps me questioning all of the time.  Rabbis spend their entire lives questioning what they read in the Torah and Talmud...they read, they analyze, they argue, they form their own conclusions.  Baby M and Maxie are the most important people in my life.  When it comes to them, I need to be proactive.  I need to know why and what and how.  I guess that's what keeps me reading about the afterlife and trying to imagine where Maxie and I might meet again.  And, more than that - it keeps me in pursuit of him...hoping that I will figure out a way to connect with him sooner, rather than later.  I miss him so much.  It is what also makes it IMPOSSIBLE for me to just pray and hope for the best with Baby M.  I need to feel like we are doing everything we can for him.  He is too valuable.  Yes, the search makes me crazy and is sometimes overwhelming but the fear is worse.  I still try to surrender whenever I can though because there is only so much I can do.  Hopefully, prayer counts for something.

In Perspective

I wrote over the weekend about a reality television personality, Bethenny Frankel, being pregnant again.  I am actually not sure about that now.  I think I heard that actually she had a miscarriage.  Perhaps she then got pregnant again?  Like I said, I don't actually know what is happening with celebrities most of the time.  But, I did see something about her speaking to Ellen about having a miscarriage at eight weeks and saying that she was devastated.

I too, had a miscarriage...at 7 weeks.  I miscarried the week after what would have been Max's first birthday and it was sad and really disappointing and.....that's about it.  It felt like god maybe wasn't sure that we knew his wrath was directed at us and just wanted to make us feel extra sure.  Hopefully, he/she knows that we got the message.  Still, I don't really picture who that child might have been.  I don't feel a great sense of loss.  It felt more like getting a rejection letter from a school I really wanted to get into.  And, I KNOW that if we hadn't lost Max, it would have felt so much harder than it did.  It could have felt devastating...and, somehow that breaks my heart a little.

When Ted and I went to the hospital last week to make sure everything with Baby M was ok, the nurse asked how many pregnancies I've had and Ted answered "2".  Ted's not a woman, so he doesn't know that they are actually asking about all pregnancies - even the ones that didn't make it.  I corrected him and told her that I had had three pregnancies.  It just hardly registers for us.  I wish it were my greatest trauma or that it even really registered on my trauma meter (not that I need something else to feel traumatized about).  I know that sounds terrible....but I do.  And, I am not trying to be controversial.  I DO get it.  I DO get that a miscarriage is terrible.  Believe me.  And, that the further along you are, the more traumatizing it would be.  And, we were only 7 weeks along with the miscarriage we had.  Still, we felt hope with that pregnancy and then it was gone and in the moment, it felt really sad but, like a week later, it just wasn't that sad anymore.  The fact is I wonder if anything will ever really feel sad again in light of this loss.

When I wrote about that miscarriage, I got so many emails and phone calls from friends.  It was nice to feel so much support.  I even heard from people I hadn't heard from since Max had passed.  Lots and lots of miscarriage stories (it actually became too much...I wasn't strong enough to handle that much pain at that time).  Obviously, people could relate.  It had probably been devastating for them.  The truth is that for us, being that it was in the shadow of losing Max - a boy we knew and loved and kissed and hugged and played with and sang to - it just wasn't.  So, just for us, it was more of a disappointment than a loss.  Again, I know it would have been different under different circumstances but these were our circumstances and in our circumstances, it was just one more kick - but not a life altering blow.  Our lives had already been devastated.

Now, this is the part that probably will make you crazy but, I am jealous that the women who have miscarriages get to breathe a deep sigh of relief when their babies are born.  And, it seems like most people think that I will do the same when Baby M is born.  But, see, I won't.  I will be happy and thrilled to see he is here.  It is hopeful for sure, but giving birth to Baby M doesn't tell me anything about whether or not he will make it to his first birthday or all of the birthdays he deserves after that.  Having Baby M is something I am so looking forward to and it will give me a sense of wholeness again in some ways.  I believe that he has saved my life thus far (well, him and Teddy and family and support from others).  If I hadn't been trying to get pregnant with him, and then been pregnant with him all of this time, I just don't know if I would be here.  I have had some very dark thoughts - still do.  But, I love him already.  I loved him when I saw the pregnancy stick that showed I was pregnant with him and I have allowed myself to fall a little more in love with him as each week has passed.  But, a healthy pregnancy is something I have experienced before.  The real challenge for me comes AFTER Baby M is born.

I have asked the doctors what we will do if the genetic testing doesn't give us any answers and they don't have a strategy, which worries me.  I have asked if we can check Baby M's liver and the response I most often get is that if we find something wrong with his liver and we don't know what caused it, we won't be able to treat it.  Then, they usually say something like, "It might be better not to check it because all that will do is worry you".  Like there is any chance on earth that I won't be worried if they don't check it.  Other doctors say that they don't think there could have been anything wrong with his liver because if there was, we would have seen evidence of that in other ways (his behavior, the color of his skin, his appetite).  All we saw was a beautiful and happy baby.  Next to the fact of Max not being here anymore, the second greatest injustice and trauma is that we have NO IDEA why he is not here.  It makes me sick to my stomach and it feels so so so so so unfair.

This pregnancy with Baby M gives us tremendous hope for our future happiness.  His arrival will bring even more hope.  However, it is his survival that I am depending on.  Anything less would leave me more broken than I could possibly handle...and the kicker is that there is no magic threshold that will give me peace.  We will just have to do the very best we can with the very little information we have.... I hate this.

Octomom

On Saturday, we went to my dad's house to visit.  We brought bathing suits, even though both of us knew we didn't really want to swim.  The last times we were in his pool, Maxie was with us.  The whole backyard has Maxie memories for me, starting with his bris.  I hope that someday, that will be a really wonderful thing.  Right now, all of our houses (ours, my dads and my moms) have so many memories, I can't help but look around and just long for Max.  I guess everything in my world makes me long for my baby.  I miss him so much.

Anyway, when we got there, my dad announced that we had entertainment for the afternoon: A momma duck and her eight ducklings (I nicknamed her - Octomom) had taken up residence in the pool.  They were SO cute.  The little ducklings reminded me of Max with their fuzzy little heads.  I was actually feeling jealous of the momma duck!  In fact, once she seemed to determine that we were harmless, she took off for like an hour.  I felt sort of responsible, like we were babysitting.  When she flew back, the pappa duck was with her...he kept flying past and she landed back in the pool.  Presumably, it was "date night".

The ducks make me think of something that I haven't really shared with many - except for jokingly.  That is my need for more children after Baby M.  I am not talking about a need like "Oh, I think we will have this one and then wait a year or two before trying for another one".  I am actually a little neurotic about it....I think.  Two weeks before Max stopped breathing, I thought I might be pregnant again.  My breasts were tender, I felt kind of crampy and a little sick.  We hadn't planned on getting pregnant again so quick but the thought excited me anyway.  Turns out that it was just the return of my period, which I hadn't had since before conceiving Max.  It had come back, I am sure, because I had stopped breastfeeding and pumping and was just feeding Max frozen breastmilk and formula.  After Max passed, I SO wished that I had actually been pregnant.

Looking to my future, I worry that breastfeeding exclusively (which I really plan to do) will inhibit my period again.  I want to get pregnant again before .......this happens again.   And, I know it's crazy because Baby M will live, right?  I mean, that's what we think.  That's what we hope.  That's what everyone keeps telling us.  It's just this horrible feeling like I need to have so many babies to ensure that one lives.  But, of course, nobody in their right mind would keep having babies if they thought those babies wouldn't live.  Plus, I am 38....so even though women continue to have children into their 40s in this day and age, there is still my age to contend with.  I can't imagine it gets any easier physically.  My body felt broken down after having Max.  I was just starting to feel normal again when he stopped breathing.

So, I found myself jealous of this duck who got to have eight babies in one shot.  And, that may just be this year.  Who knows how many babies she has had or will have in her lifetime?  I'll be happy with what I get.  And, no, I don't really want 8...but 4 (including Max) might be a good number. And, maybe we'll adopt (though that sounds like a long and sometimes heartbreaking process as well).  I would have been happy if Max had been our only to be honest.  But, my future baby/babies MUST live.  They just have to live.  Still, I am not planning on getting back on that mini pill after Baby M is born.  We're just rolling the dice from here on out (ok Ted? :))