Mind Control

I am in a new stage of grief...probably because little Mo is here now.  It is impossible for me to sit around looking at Max's photos and going over his whole life and his death over and over in my brain.  I can't just sit and wail and holler.  I am too busy changing diapers and taking care of his little brother.  Whenever Mo naps though, I have to either sleep or keep myself busy because my mind goes back to the trauma and takes me back to the pain.  I have been forcefully pushing myself to think about everything but Max all day.  Whenever I let myself slip, I think about the moment that we left the hospital without Max.  We just left him there!  And I feel sick with myself.  Sick that I just left the person at the center of my universe with a bunch of strangers in a strange place.  I left him there and am now living a whole life without him.  Honestly, it makes my head spin and my stomach turn.  I know there was no choice.  He was gone.  But, the horror of it doesn't leave me.  The horror is engraved on my heart.  It makes me feel unworthy and horrible.  I don't know why because I don't feel that way about other parents who've been through this nightmare.  I don't feel this way about Ted.  In fact, I feel like I have to pull it together to ensure Ted has a beautiful life.  I feel he is worthy of so much more than what he has been given.  Somehow when it comes to thinking about myself though, I feel disappointed and horrified.  Max was everything to me.  EVERYTHING.  And he is gone.  (I cannot believe my son is gone!)  And I just left him in the hospital and came home and started a new life without him.  I have to think about other things.  I have to forcefully push my mind into other thoughts...because when I go there, it is hard to return.

The Great Debate

There is an ongoing debate in the world of bereaved parents.  Are we allowed to be angry at people who didn't realize that they were hurting us?  Are we allowed to be jealous of people whose children are still living?  Are we allowed to compare our losses?  I say "yes" to it all but many say no.  Most of the ones who feel that we should not be angry, not feel jealous and not compare, are not bereaved parents.  They are outsiders looking in and telling us that none of those things will bring back our children.  They are right.  They are telling us that those feelings exhaust us and are a waste of emotional space.  They are right.  They tell us that all grief is significant grief in the life of the griever, so we should not compare.  Of course, my experience is that I don't compare....other people are the ones making the comparison (to their early miscarriage, to their dog's death, to losing their grandparent).  I am simply the one pointing out that those things are not the same as losing a child.  I am un-comparing....I am making that a word.  And, yes, I agree that it is a waste to be jealous.  On the other hand, why should I be held to a different standard than you?  Are you jealous of your friend with the amazing husband?  Are you jealous of your relative that takes spectacular vacations? Are you jealous of your co-worker that gets paid more than you do but doesn't deserve it as much?  And, yes, anger is a waste of energy.....so, why were you bitching about your neighbor or how your friend hurt your feelings at that party last week?  Why were you complaining about your brother in law or mother in law or whoever else it was that you were complaining about?

I guess my question is why you would think that I should be held to a higher moral code than you hold yourself to?  Is it because I lost my child?  Honestly, that makes no sense.  If anything, my emotions are more raw...it is harder for me today to keep my guard up than it was before I lost Max.  I am just as jealous, just as easily offended, and just as easily hurt as you are.  All of these emotions come from the same places in me as they do in you - feelings of not being worthy enough, feelings of sadness and hurt.  My wounds might be easier to see than yours, because I am making them public, but don't tell me you haven't been offended by someone's recent thoughtless offhanded remark.  Don't tell me you haven't been jealous of a friend or a colleague (why are things so much easier for other people?).  Don't tell me you don't compare yourself with others....I won't believe you.

Yes, we should all cultivate a much more zen like approach to life - accepting what is - no jealousy, no anger.  But, I'm just being honest.  Time to put the debate to rest.  We are all human.  End of story.

A redefined life

Each day is different.  That is the craziest part about this grief.  Some days I feel strong, like I can face this life and get through it and even find a rhythm I can be proud of again.  Other days, I can't see past my pain.  I have an idea of what I would like my life to look like moving forward.  I'd like to re-find myself - pieces of my old self, that is.  I know life might last a long time and I need to live it as fully as I can.  It is the best way that I can honor Max.  The quicker I get through my days, the sooner I will see him again.  Learning a new way to be happy is the best way to mother Mo.  He deserves a happy, funny mommy.  I think I am already doing a pretty good job of putting my best self into loving him.  I want to find a way to engage with strangers who ask me about my children that feels honest.  I don't see myself ever saying Mo is my only child, but telling perfect strangers about the MOST personal tragic trauma of my life in casual conversation seems to understate my loss and my love.  I haven't figured this one out yet but I am working on it.  I want to get to a place of understanding that this life is hard and to just let it be.  I am tired of fighting that truth.  My struggle can be there without my constantly trying to battle it or suppress it.  Being Max's mom is part of what defines me.  I don't want to put that away.  It is a part of me that deserves a voice...and, not just here, on this blog, where I don't have to look it in the face.  Being Maxie's mom will continue to define me...I want it to.  I also want being Mo's mom to define me.  My boys are my entire life.  From the moment Max was born, nothing else really mattered.  I want to spend time with people who make me feel good and listen to me.  I want to create boundaries to shut out those who don't.  I want to learn how to have fun and enjoy the good parts of life.  If I don't, if I believe that life is only sorrow and trauma, then I wouldn't want to give life to my children, right?  I must still trust that overall, life is good.  That is why I gave life to Mo.  That is why I want to give life to more children.  To deny that which is good in life is to be a hypocrite now that Mo is here.  There is room for happiness within my grief, or grief within my happiness.  I am looking for these windows and they are slowly opening for me from time to time.  I don't love or miss Maxie one ounce less just because I am finding pockets of peace.  Nobody that I care about is judging my path...and if they are, that is their issue, not mine.  They haven't walked in my shoes and I haven't walked in theirs.  I want to live an honest life...never pretending to be more healed than I am...never feeling like healing is a denial of my sweet Max.

These beautiful bracelets were an anniversary present from Teddy to me.  

They are Hamsas (a middle eastern symbol for good luck)

with our boys Hebrew names engraved on them.  

Yehuda (Maxie's Hebrew name) and Eitan (Mo's Hebrew name).

Mo easy

I feel like a traitor telling you this, but I gotta speak the truth.  Mo is an easy baby!  Mo is an even easier baby than Maxie was.  Maybe it is because we've done this before so it isn't shocking, or maybe it is because Mo is such a bright light in an otherwise dark time, or maybe he is just easier.  Don't know.  Mo is an awesome baby!  He is a total natural nurser, which is especially fabulous because I am in no mood to be sitting at the Pump Station with a room full of first time moms talking about latches and pumping.  I am just not emotionally capable of it right now.  He is a good sleeper - meaning, he wakes up every few hours and nurses and goes right back to sleep (usually).  It doesn't mean he sleeps through the night, but I haven't slept through the night myself since my early twenties.  Girlfriend's got a tiny bladder.  As long as I am not up with the baby feeling frantic and helpless, I'm good.  There have been a handful of long nights but they really weren't that bad.  Ted always asks if he can "walk Mo around" - literally meaning he just holds Mo and hums to him and walks him around.  It always puts Mo to sleep.  He is also pretty portable.  We don't go out much but when we do, he is easy to be out with.  This week I took him to physical therapy with me and my six week doctor visit with Dr. D.  He was a trooper.  He likes being held, read to, sung to and played with.  Some days we "do stuff" like listen to music and play in his room.  Other days, he just sits on my lap while I read or talk to him or watch television.  He's really low maintenance and he is really good at tummy time (he was born with a really strong neck...everyone in the delivery room was commenting on it).  I am just wild about him.  Thank god that we got another easy baby.  Also, he lets me kiss him all of his waking hours.  My lips are literally glued to his delicious smelling cheeks all of the time.  He's just awesome.

A weight lifted

Yesterday morning one of the geneticists from UCLA called to tell us that Mo does NOT have the same carrier gene for a Fatty Acid Oxidation (FAO) as Maxie and Ted.

That was the very best anniversary present that we could have received.

And, even though nobody really thinks being a carrier killed Maxie (since being a carrier means Maxie didn't have the disorder, he just carried it, like Ted does), it was the one inheritable gene that was of great concern to us.  So, as far as I am concerned, Mo is back into the statistical pool with the rest of the population.

A weight feels lifted off my shoulders.  The chances are that Mo will live a long long life.  And, I just won't get into all of the feelings that resurface for Max right now.  Today I am dwelling in the positive.

On our third anniversary

Dear Teddy,

Today is our third anniversary and I am so grateful to be sharing my life with you.  We have experienced the kind of tragedy that most will not see in their lifetimes and it has made me want to give up on life at times.  You have given me the will to go on.  You have reminded me many times that there will be happy times again, and that we have each other.  You have indulged all of my fantasies to run away - to Santa Fe, to Israel, to Costa Rica.  You have never made me feel crazy for all of my questions about the meaning of life and curiosities about the afterlife.  You have spent night after night after night assuring me that you KNOW that there is more than this and that we will be with Max again someday.  You have repeatedly assured me that we won't become another statistic and our marriage will last through this....even become stronger...which it has.  You have listened to me yell about people who have hurt me and even allowed me to vent about those who I have felt haven't been there enough for you.  When I didn't think I could ever go back to work, you shouldered the responsibility.  You made our little shack into a beautiful home.  You are warm and gracious and forgiving.  You are handsome and funny and have made me laugh when I didn't think I would ever laugh again.  You are the most incredible father.  Maxie loved you like crazy.  I could see it in his eyes and it warmed my heart.  I know Mo will love you just the same.  When he is restless, you relax him with your strong arms and sweet voice.  He feels safe with you.  You are my soulmate and my better half.  You remind me daily that I am not alone.  I am so grateful for you.  I love you and again, words are inadequate.  

Your wife,
Abby

Blind Panic

My friend Susan commented on my blog a couple of days ago, making reference to the earlier days of her grief.  She was worried about me and wanted to see how my feelings now compared to her feelings just a year after losing her daughter, Catherine.  I was glad to see that she felt that her own blog from that time reflected many of the feelings that I am having.  I felt sufficiently intrigued to go back into her archives and read some of her old posts.  I was also looking for recognizable feelings.  The way she expresses herself really resonates with me, so I had a feeling that I would find something familiar and I did.  What struck me most was her ability to so succinctly put a name on the feeling I have had ever lessening doses of since about two weeks after Maxie's death - "blind panic".  BLIND PANIC.  For the first six months after Maxie died, I felt completely panicked all of the time - all day and all night.  It never relented.  It never slowed down.  It felt like being on a freefall roller coaster with no bottom in sight.  My soul was climbing out of my body.  I could not stand the voices and thoughts in my head.  Adrenaline pumped through my body constantly.  I had no peace at all.  I could not see one minute into the future.  I didn't know what day it was.  I couldn't figure out if I was hungry or tired.  All I knew is that I was devastated and panicked constantly.  I still feel like this a lot, only much less often.  This feeling of blind panic is HELL.

It almost makes me laugh thinking about the impossible expectations put on me.  I couldn't have had a lunch date with you.  I couldn't have paid much attention to you at all quite frankly.  There were a few people who actually came out for Maxie's funeral and left annoyed or angry that I didn't pay enough attention to them - I could not pay attention to anything (most people came for support understanding that we were in no position to do much more than grieve).  Nothing mattered but our loss.  Nothing mattered except that Maxie's life was gone.   I remember a strange conversation with the HR director at my work.  She was gently encouraging me to attend our National Conference only two months after losing my only child.  Staying in a hotel in a city unknown to me, putting on a suit each morning, building relationships with our donors, and making friendly small talk and more weighty issue focused conversation through the day - from early morning until late at night for days on end.  There is no way I would have made it a full day without having fallen on the floor in a complete panic attack.  She promised I could go to my room whenever I needed a break.  I wouldn't have left the room.  I was in a blind panic.  Not sure how I would have ever gotten on the plane.  I remember people coming to visit our home and then leaving, telling Ted that they thought I was bothered by them.  I hardly noticed them - completely blind in my own panic.  I guess they were offended by a woman possessed by complete and utter horror and panic.  People liked telling me about the lessons they were learning from my loss (to hug their children tighter, to live life to the fullest) - a slap in the face - I was in a COMPLETE blind panic.  I felt like a wild beast.  If I were to paint an interpretation of myself at that time it would be wild hair, bloodshot eyes, nerves coming out of my skin, completely naked and freezing cold.  I often shook uncontrollably for no temperature reason at all.  Blind Panic.  Perfect description.

Today I don't feel blind panic all of the time.  Thank god.  I do, however, still feel it intermittently, almost every day at some point, when I think about any of it too deeply.  I mostly just get through each day focused on loving and taking care of Mo, on things that need to get done, on whatever I am reading or watching on television.  I try really hard not to think about my future, about how I will reintegrate with friends or what I will tell people when they casually ask how many children I have, because when I do, I start to panic again.  If I think about having lost Max, about never seeing him again, I feel more blind panic.  The pain never ever goes away but the panic is lessening every day. Still, I never know when it is going to hit.  It hit hard on Monday, while talking to a friend about my feelings of isolation.  It hits hard when our loss feels minimized by others.  It hit hard the other day while Ted and I played with Mo in the baby's room (Max's room, now Mo's room)- looking around at all of Max's things.  It sometimes hits me when Mo receives a present for an older baby or when I see children of about two years old out in the world.

These aren't just words.  This is my best description of how my loss feels.  This blog is full of the best ways that I can think of or borrow from others about how losing Maxie feels.  But words are not enough to describe complete horror, devastation, blind panic, heartbreak.  I stole Susan's words because I know that my words are not even sufficient.  I am just a tale of urban sorrow.  The story of a woman you sort of knew who lost her baby boy.  The friend whose loss makes you appreciate your own fortune.  That in itself is part of what causes me total blind panic.  Maxie's life should amount to so much more than that - so should mine.  Please try to understand.

Mo at six weeks

Mo is six weeks!  Here are some photos from the last week:

The Old Me

If you asked me to describe myself before Maxie died, this is what I would probably tell you.
I love laughing and funny people.  Sometimes I like to count myself among the funny.
I love dancing.  One of the things I love most about my husband is that he is an AMAZING dancer.  I love dancing to R&B, pop dance classics, old school hip hop, merenge, salsa....you get the picture.
I am pretty social and outgoing.  I like meeting new people.  I am comfortable with new people (MOST of the time).  There are odd times where I feel totally insecure and out of my element and they are rare and inexplicable.  Mostly I do pretty well in social situations.
I am a very happy person with a close family and large group of close friends.
I think of life as an exciting adventure and am always planning my next experience.  I like traveling, learning new languages, doing new things.
I am cautious but I don't let it stop me from living.
I am sensitive and my feelings are easily hurt.  I usually get over it though.
If I had to describe myself since Maxie died, it would be like I was describing a totally different person - even though my old self is still in there.  It is like I am unintentionally suppressing her all of the time. It is totally exhausting and it feels like there is nothing I can do about it.

I still love laughing and funny people but they are hard for me to be around.  I'd rather watch them on television then be with them in person.  I don't really count myself among the funny anymore though Ted can vouch that I still sometimes land a good zinger.
I can't imagine ever dancing again (even if Ted and I DID once do the Roger Rabbit and Running Man on our deck to "Poison" by Bel Biv Devoe earlier this year).  I can't imagine going out for a night of salsa dancing.  I can't imagine rocking out at a wedding.  I was ALWAYS on the dance floor at weddings.  I used to like dancing more than cake.
The idea of being in a room full of strangers is so scary to me.  What if they ask me if I have children?  What if they want to know how many we have?  What if they already know who I am and talk about me behind my back in front of my face ("there is THAT woman whose baby died").  Lord help me! Gone are the days of just talking to people.  Everything feels so loaded.  I am tired.
I never leave my house - so life isn't quite the adventure that is used to be.  It's no fun anymore.  Traveling still sounds fun to me - but I can't imagine ever going back to my favorite places - like Costa Rica, where we have a vacation home.  The last time I was there was with Max.  We sat on the beach in the spot where Ted and I got married.  I fantasized bring him back every year and camping out in our spot.  Eating fish tacos and building sandcastles and watching monkeys in that spot.  That spot breaks my heart.  The place where I imagined all of my dreams coming true is a reminder that they didn't.  That in fact my worst nightmare came true.
I can tell I have some kind of anxiety disorder but I am not sure what it is.  I am overly cautious.  I have a feeling of impending doom all of the time.
I am more sensitive than ever.  I do not forgive as easily.  That is too bad.  Forgiveness is important but some of the stuff that I have experienced this year I will never forget.  I can't imagine forgiving some of it.  I really don't know if I will be a big enough person some day.  Today I feel miniscule.  It won't happen soon.
That being said, most of these things I feel will evolve with time.  I can't be sullen forever - it isn't in my nature.  And, I truly laugh with Ted and Mo.  I even catch myself laughing with other people sometimes.  I won't be suppressing it forever.  It is too hard.  I'm sure we will dance at weddings again.  We will probably have to go places and meet new people and they will surely ask us how many kids we have and we will have to answer and scare others with our sad, sad story.  That's just life.
We will probably go back to Costa Rica with Mo one day.  We will probably sit in our spot.  Or, maybe we will pick a new spot...but we will still be able to see our spot.  It will be painful and bittersweet.  As we watch the monkeys play, I know we will think of our sweet Maxie and wish that he were with us (as we will always do).  The new Abby won't be this Abby forever.  There will be a newer Abby too and then a newer one after that but all Abbys will long for Maxie.  All Abbys will remember the me that came before losing my Max and this faded and broken version of myself that came after.

Details

A father who lost his baby to SIDS sent me an email yesterday on what would have been his son's 20th birthday.  I have corresponded with him several times since finding him on a grief website a while back.  He reached out to me on his son's birthday - ME: so early on in my grief and HIM: many years along this terrible road.  I felt honored to hear from him.  Had I known that yesterday was his son's birthday, it would have been me reaching out to him...but I didn't know.  He has had five children since losing his baby boy and told me in his email yesterday that he just found out that his wife is expecting.  And yet, around this time every year, his thoughts turn back to the baby he lost and his heart breaks again.  New babies do not cancel out the grief or love of babies who died.  I asked him if, after twenty years, he remembers the details of the baby he lost.  "I remember a lot about my son", he said, "including his eyes, which were changing from blue to gray.  I remember his smile and his little movements.  I remember his smell, and even the smell of his diaper.  I know that sounds weird...".  I cried while reading this.  It doesn't sound weird to me at all.  Honestly, changing my babies diapers never really has felt weird or gross. In fact, to change a baby's diaper is truly a sign of unconditional love.  And I remember the bonding Maxie and I did while he was on the changing table.  He'd look into my eyes and smile.  I'd make the sign for I love you and sing it out loud to him.  He'd try to turn over while I wrestled with him to get the diaper on straight.  I miss changing his dirty diaper because I miss everything about him.  I miss every interaction I had with him.  I miss all of his smells, dirty diaper included.  My friend told me that he and his then wife had another baby right away that didn't remind him of his son.  "A couple of my kids cried like my son.  His lower lip would quiver for a little while, and then he would cry out.  It was both cute and pathetic."  Twenty years later, he remembers his baby's cry.

I asked him about whether he remembers, in part, because I am so afraid of forgetting something...some small detail.  I don't want to forget a thing about my Maxie.  I am so afraid of losing his memory in addition to losing HIM.  Maxie's birthday is in a month.  He would be two years old....but he will never be more than nine and half months old.  How can this be?  I am working hard to try and remember everything about our nine and half months together so that even when he has been gone twenty years, I will still remember his sweet face turning pinkish red when he cried, his effort to insert his little fists in to his mouth, his gigantic smile lighting up his bedroom when I went in to wake him up in the morning, the way he always settled down when I recited "Goodnight Moon" in his little ears.  He lit up our lives and our hearts.  I wouldn't trade my nine and a half months with Max for a lifetime with any other kid.  He was just perfect and I won't let myself forget one thing.

I am with you

A girlfriend of mine recently lost her father.  She is a real daddy's girl and she has been totally distraught since he died.  She told me that she called all of her friends who had lost a father to commiserate, find solace, and try and see what her path might look like further along.  And, that is just it.  There is nobody from my old life for me to call.  I don't know anyone who has lost a baby.  We are part of such an unbelievably small statistic that there is nobody that I can talk to about this who knows me...who knows what "this" is like.  It is so incredibly isolating that when I tell you I have trouble catching my breath sometimes...I literally mean that there are times that I struggle to breathe.  And, to know that in some part, I will be carrying this around for the rest of my life.  It boggles my brain.

I am in a dark place.  I miss Max so much.  I am beside myself that my sweet little boy is not here...that he doesn't get to live a life.  What a waste!  I am sad and angry and I don't trust tomorrow.  And, I want him back so badly.  I love him so much.  And, everyone keeps asking me if I can find any comfort in Mo.  Seems kind of stupid actually.  I LOVE Mo!  He is sweet and smells good and he is funny and easy and perfect.  Max was all of those things too and my beautiful dreams turned into horror!  But, yes, I find tremendous "comfort" in Mo.  As if human emotions were so simplistic that my horror and deep sense of loss for having lost my nine month old baby would somehow turn into an inability to love my second son just as deeply.  I probably cherish my every minute with Mo more than most parents of a six week old second child.

This is complex stuff I am dealing with and you wouldn't know a thing about unless you are one of the statistically unlucky people like me!  I woke up this morning and thought about not writing because I know I am a broken record already.  I know everyone would rather hear fluffy things about Mo than dark things about loss and heartbreak.  But, I also know there ARE other statistically unlucky people who are reading this blog from time to time and I wanted to say that I am still feeling the weight of this traumatic loss every day.  I am not telling you to scare you....I am telling you so that you know that what you are feeling is "normal".  I am as unsettled, as heartbroken and as tired as you are.  I am with you.

Half Smile

Oh my lord, I love this baby!  Mo is such a super wonderful boy.  We love him so much.  He is growing so quick and even starting smiling this week.  I can't wait to do a whole post on Mo's smiles with lots of pictures, but so far I haven't been able to catch any of them.  Except this one, which is only sort of a smile.

Stay tuned....Mo will be 6 weeks old on Monday!  That was a big marker for Maxie and I.  I feel like that was when I finally got comfortable enough to leave the house with him for stuff other than doctor's appointments.  Time is flying - thank god.  

Gift Horse

When Maxie was born, we received so many beautiful gifts.  Lots of it was stuff for a much bigger baby.  Clothes and toys for babies up to two years old.  "You won't believe how quickly they grow up", everyone said.  Only Maxie didn't grow up.  He died at nine and half months.  My whole world came crashing in.  I was here, without him, in this house full of his stuff.  Some of it stuff he used daily and some of it stuff he never grew old enough to use.  We packed a lot of it away and eventually shut the door to his bedroom.  I couldn't see his stuff.  I spent many months thinking about following him to wherever he is.  It felt (often still feels) like life was over.  In a way, mine ended that day.  I will never be the same.  I am forever in pain, forever heartbroken.  Thank god I got pregnant with Mo.  Knowing he was coming saved my life.  And he has saved my life...but my head is spinning.

Ever since the news broke that I was pregnant again, we have been receiving gifts.  Amazing, generous gifts.  And, once again, I have been getting clothes and toys for a much bigger baby.  My heart drops every single time.  I just don't know what to do with all of this fear.  One of my best friends came over the other night to meet Mo (Marla was in England when he was born) and she brought over the cutest baby gap outfits for Mo.  She was so excited for me to open up the present.  She told me how fun it was shopping for a little boy (she has a little girl).  Inside the box I found three outfits - one for 3 months, one for 12 months and one for 19 months.  My heart dropped.  "I am so scared!", I blurted out.  "What if I lose Mo too?"  Sometimes it feels like a very real possibility.  I don't feel safe.  I don't feel like Mo is safe.  I can't lose him too!  And life with Mo is so much like life with Maxie.  I mean, I am not really doing anything that much different, so what is going to be the factor that changes Mo's fate?  A new pediatrician?  A new caretaker?  Having me home with him?  Taking the supplement?  Obviously, I am hoping that YES - one of these things or who knows what will ensure Mo the long and happy life that he deserves.  "I am scared I am going to end up with all of this stuff for a baby and no baby....again."  She offered to return the gift she was so excited about.  She looked pretty deflated.  I have a way of really ruining the mood.  But, of course, that won't take care of the root of the problem.  The root of the problem is that my brain is looping worst case scenarios and I am scared out of my mind.  How can I live one day at a time while planning outfits for next winter?  Usually I just look, say thank you and try shut down my brain immediately.  Poor Marla - she is one of the few people I feel safe with.  Of course I love her present.

I am out of my mind with gratitude at the generosity of the people who love us and our family.  Mo is a lucky boy.  He has wonderful clothes and toys for the new two years of life.  I worry about saying anything at all because I can't be anything but grateful...but I can't help it....I am SO SO SO scared.  So, I am not returning the stuff that is for the much bigger baby but I am packing it away full of hope in my heart in boxes that I can't wait to open.  I am doing my best not to gasp or burst into tears when I see clothes for a 9 month or a 12 month baby.  I am praying that Mo makes it to 9 mos and then 12 months (and then 24) and then to an age where I don't count his months at all anymore but just his years and half years and then to an even better place where I see him graduate from schools and go out with friends and fall in love and maybe even have children of his own.  I am living one day at a time and trying not to think too much about any of the "stuff"...it's just stuff afterall.

Special Day

My mom has one of those digital photo frames.  It is packed with scrolling photos of Max.  Ted and I were over there on Sunday and a series of photos from a day at my dad's house began scrolling.  It occurred to us that it was a day that could have easily never happened.  Even with the best intentions, packing Max and all of his stuff up to drive to the West Valley when it is over 100 degrees outside is not easy.  Usually when I did go there, I'd just bring Max.  On this particular day, Ted came too.  On Sunday we talked about how glad we went over there on that day.  If we hadn't, we wouldn't have had these beautiful pictures or wonderful memories and Maxie wouldn't have had this special day.

Without you....

My heart is dying.

If you can't beat 'em

If you spent time with me today, you'd probably see lots of my old personality coming through.  I'd make jokes, I'd ask about your kids, I'd tell you funny things about Mo.  Chances are that if I let my pain seep through in your presence, I'd clean it up pretty quick.  People seem to like me a whole lot better this way.  I have avoided a lot of "tough love" lately by just not mentioning Max or my broken heart.  People are kinder to me when I keep my feelings to myself.  If I dare bring it up, I am mostly ignored...like I didn't say whatever it was that I said.  I often wonder if everyone else around me is also faking it.  Are we all just sitting around faking it together?  I know that if they are also faking it, they would not bring up their pain to me because they are afraid it would "open up the flood gates" and that bothers and upsets them.  Other people are so much better at being dead on the inside than me.  I envy them.  So, I do my best to shove it down deep inside and pretend like it isn't there.  As I force myself to grow more dead on the inside with regard to Max, I grow more dead on the inside with regard to everyone else (except Mo) as well.  I am unable to allow my positive emotions to flourish (like love and attachment and joy) while suppressing the negative ones (like fear and sorrow and heartbreak).  I just cannot do it.  I am just working hard to emotionally detach as much as possible (I am not allowing myself to emotionally detach from Mo though because he deserves to be loved every bit as much as I love his brother - which was completely and with utter devotion).  I wonder if the detachment is good or bad.  I guess it is "good" on the one hand - because if I lost anyone else (except Mo), it wouldn't be nearly as painful because the deader I get on the inside, the less attached I am to anyone I ever felt close to.  It's "Bad", on the other hand - because I can't figure out the purpose of any of my emotional attachments at all if I have to work this hard to deaden myself to them.  I guess none of it actually really matters anyway.  What matters is that I am able act like everything is ok so that eventually maybe I will feel like everything is.  I think I am finally starting to get the hang of it.

Not replaceable

When I was pregnant with Mo, I worried about how being a mother again would affect my grief process.  I knew I would be doing things I did so lovingly with Maxie and I worried that it would be too much for me to handle emotionally.  It is true that most everything we do reminds us of Maxie.  We think about Max all of the time anyway, but the small details of caring for Mo really bring back our experiences.  It can be very hard...it brings the loss up to the surface all of the time..though it is never really too far beneath as it is.  There are certain memories I have with Max that I had actually "forgotten" (maybe forgotten isn't the right word but, hadn't thought about it in a long time.)

Giving Mo his supplement reminds me so much of giving Maxie his acid reflux medicine, both liquids given the same way with a plastic syringe.  Mo makes a funny face because he isn't used to the taste - it is grape flavored.  Maxie made the same face, until he got used to the grape flavor, and then he actually took it pretty easy - smacking his little lips together.  Mo has just started doing the same thing.  Oh my god - I miss my Maxie.

Maxie loved his swing.  Whenever he was BEYOND fussy, I would put him in the swing and he immediately calmed down.  Mo is the same way.  In fact, as I am writing this, he is napping in the same swing.  Lord - I miss Maxie.

I stopped swaddling Maxie pretty early on.  He didn't like it and regardless, he always Houdini-ed his way out of it unless I made it CRAZY tight.  He liked to be hands free.  So does Mo.  I rarely swaddle him now because it often defeats the purpose of calming him.  He expends so much energy trying to get out of it - grunting and squirming.  Both boys are wrapped from their armpits down most of the time.  Holy Moses - I miss my baby Max.

Breastfeeding was something that I was really worried about.  It is such an intimate experience that I shared with Max - a time when we were most close - cuddling, often sleepy and warm in bed.  Breastfeeding Mo has reminded me of little details I haven't thought about in so long.  Maxie, like Mo, used to rest one hand on my chest or try to grab onto me.  Maxie also played with my necklace while nursing, turning the infinity charm I wore round and round in his little fist.  Maxie, like Mo, would sometimes fall asleep while nursing.  When he was really tired, he would fall asleep before the nursing ever began, then cry when I pulled him away, then sleep again when I brought him close.  When Maxie got older, he was easily distracted.  Sometimes I would play with him while nursing.  I would take his hand off of my chest and put it in my mouth, pretending to eat it up.  This made him giggle.  I loved making Maxie giggle.  I know I'll be doing the same thing with Mo.  I know he will play with my Maxie necklaces.  Bittersweet.  I miss him...oh god!  I miss him

I am dying for one more day with my beautiful boy.  My heart hurts so much.  It never subsides.  Taking care of Mo is so lovely.  He smells so good - so much like my Maxie.  He is so sweet - so much like my Maxie.  He is such a good baby - just like Maxie.  But, Mo is Mo and I am glad he is his own person.  I love him wildly.  They are the same in so many ways - in ways that I sometimes feel for a split second like nothing happened- like I am still just taking care of the same boy - like he has come back to me.  But that feeling only lasts for a split second - as I realize that my Max will never ever be replaced.  He is irreplaceable.  He was perfect and sweet and my soulmate.  I waited my whole life for him.  Same as Mo....and yet, totally different.  He holds his own special place in my heart forever and the hurt never goes away.  One baby doesn't take the place of another - and no baby ever should.

Monitor

People have been asking about the monitor that Mo wears on his diaper.  He wears a Snuza monitor almost all of the time.  It monitors his movements.  It will give him  a little buzz by vibrating if he doesn't move for more than 10 seconds.  If he still doesn't move, an alarm will go off.  I know that the monitor won't save his life, but it does help me sleep at night.  If Mo didn't wear the monitor, I'd probably just sit and watch him sleep to make sure he keeps breathing for as long as possible before passing out.  As it is, I open my eyes periodically throughout the night to see if I can see his chest moving.  If I don't see it moving, I rest a hand on it.  I did the same thing with Max, but it is obviously a much more real feeling threat with Mo (because I never thought we would be the 1 in 2500 family with Maxie and now I know that we ARE).  When I checked on Max, I felt like I was giving into a fear that would never be realized.  When I check on Mo, a part of me is always panicking.

Mo's Snuza monitor helps his mommy sleep

One month old

This is my newborn Mo

Here is my Mo at one month old.

He's already changed so much!
(He's got a little infection on the thumb of his right hand, which is why he is wearing one glove)

Lessons

I am learning about my relationships.  Some of it is stuff I wish I never knew.  Some of it is stuff I never thought I would find.  I am learning who I can call and cry to, who will just listen and tell me that they are so sorry that I am in so much pain, who will just tell me that they love me and that they love Maxie.  Some of these people are longtime friends and some of them are family.  Some of them are people who I never knew I could trust and love in this capacity.  They have saved my life.  I am forever grateful.

I am also learning who I can count on to be there for me in a more logistical sense.  They are willing to run errands for me or help me get other stuff done.  Often times, these two sets of people are not the same (but sometimes they are...these people are saints).  The errand people can't be there for me emotionally. They just can't handle my pain (neither can I but I have no choice).  They are helping in the way that they can.  Unfortunately, sometimes I put some of these people into the previous category, where they really don't belong.  They act uncomfortable or get mad or even annoyed at me for expressing my despair (even when they have asked me how I am doing or how I am feeling).  They are doing the best they can.  I am going to try to shield them from my real emotions.  When they ask how I'm doing, I will do my best to not really tell them.  They don't really want to know.  They are asking because they want to hear everything is better, so I will let them think it is.  I appreciate their willingness to help me out and I need to learn to leave it at that.  It makes me feel worse to argue with them about how much I miss Max or how misunderstood I feel.  It makes me feel embarrassed when my cries are met with blank stares.  It makes them feel bad too.  It isn't worth it.

Lastly, there are people who haven't tried at all.  For a while, I mourned those residual losses.  It made me sad that I lost friends on top of losing Max.  I am not sad about those losses anymore.  I look around now and I am so happy with the friends that are left standing.  They mean more to me than I ever knew friendships could.  I don't really want the old friends back anymore and that feels really liberating honestly.  I don't have the energy to try and re-establish those connections anyway.  I am learning that grief comes with many many lessons and that they aren't learned overnight.  Everyone has their strengths and weaknesses, including me.  One of my greatest weakness is in wanting to share everything I feel and in wanting everyone to understand me.  It just isn't possible.  I set myself up for so much disappointment this way.  The world doesn't revolve around our family.  The people closest to us have their own lives...they aren't always thinking about our loss (even when it is, in some way, their loss too).  I know that.  I think if I can try to remember better when to keep my mouth shut and when I am actually safe, I will save myself (and others) a whole lot of heartache.  I'm sure I'll be letting you know how that goes.

Mandy

I am so lucky to have three very special nieces.  Each of them are so cute and unique in their own ways.  My oldest niece, Mandy, is an amazing little girl.  She has such unique relationships with all of us.  Uncle Teddy and her are tight.  They have special secret made up games that only they know the rules to.  Her bond with my dad, her papa, is strong.  It reminds me of the relationship I had with my mom's step-father.  It didn't matter at all that we were not actually related by blood.  She and Maxie had a special bond starting from before Maxie was even born...from before most people even knew I was pregnant with him.  And, although she was really rooting for a girl before he got here, she loved him all the same when he turned out to be a perfect little boy.  Now she has two little sisters (her daddy has one too) but at the time that Maxie was born, it was the closest she was getting to being a big sister.  She was loving and helpful.

When Maxie passed, she felt it deeply...I could tell.  She looked at Teddy and I with so much love and concern and talked about Max all of the time.  She begged her mommy for months to take her to the cemetery so that she could visit him.  How hard it must have been (and probably still is) to make sense of this loss.  I can barely do it myself and I am not six years old.  I think the last time she had seen Max was at her fifth birthday party - where she mostly ignored all of her family in favor of friends but showed Maxie off to all of the little girls.  This was a great loss for Mandy, no doubt.

At Mo's bris, Mandy got right up front where the action was, like she did at Maxie's bris.  I worried about her because I remember my brother's bris scared the daylights out of me and I wasn't even in the same room.  I asked her grandma (my stepmother) where Lyndsey and Camille were and she told me that they were seeing Kelly Clarkson (?) at the Hollywood Bowl.  "How come Mandy didn't go?", I asked.  "Because she wanted to be here", she replied.  I was not at all surprised.  She is special.  There is no way I would have made the same choice at six years old.  No way.

Yesterday, my stepsister came over with both of her girls - six year old Mandy and five month old Camille.  Mandy loves babies but she was a little stand offish with Mo when she first got here.  She asked, "What's this baby's name again?".  I know she knows.  I can understand why she wouldn't want to commit.  Plus, she has her own baby sisters now.  She can get her baby fix at home.  Slowly she became more interested.  When her mom asked if she wanted to hold him, she got pretty excited.  I told her she could only hold him if she knew his name.  "Mo", she muttered under her breath.

How funny is it, by the way, that Mo looks as big as Camille in this photo?  I am thinking it is an optical illusion...but maybe not.  She is actually a big baby too.

Later she found one of Maxie's baby books.  A photo album that I made for the grandparents for Mothers/Fathers Days two years ago.  She went through all of the pictures declaring, "How Cute!" at each one.  She really loved Maxie.  She got to a photo of Maxie that looked just like Mo and said, "Which baby is this?  Maxie or Mo?"  "It's Maxie of course", I told her.  "Oh", she said with a smile, "he looks just like Mo".  And afterwards, she asked to see what was in the locket I was wearing.  I showed her that it was an engraved photo of Maxie.  "You should get one for Mo too", she said.  I think she is warmed up to the little guy.  I knew she would.  I'm sure he will love her the way Maxie did.  She is an excellent big cousin.

I love our May-May! I just hope she doesn't grow up too quick.  

Tired

I wrote a whole post this morning about sensitivity and I just don't have it in me to publish it.  I am too upset and tired (and I don't mean "tired" because I have a newborn.  I mean tired because I have been grieving for 13 months).  

Here are some highlights of what I would like to say:

Think about what you say before you say it to me.

Don't tell everyone that you don't know what to say - because you DO know what to say - you are just too uncomfortable to say it. (Refresher - you could say "I am so sorry that you lost Max.  Having to live without him is terrible.  It is so unfair that this happened to you, to him!  He was a beautiful boy."  Should I go on?  You KNOW those are the right things to say...so STOP saying you don't know what to say.  STOP IT)

And, you other people - stop defending the people who "don't know what to say", because they DO know what to say.

And, you OTHER people - the story of when your kid almost died, or your fear that he may someday die, or the idea that you may die......ENOUGH.  My BABY DID die!  Don't tell me that you couldn't go on if it happened to you.  You know that I have no choice.  BE SENSITIVE!  How else can I say it.  Think before you speak.  

It is not my job to just absorb all of this.  I am having a hard enough time absorbing that Max died.  Oh my god - I miss him so much.  I can hardly catch my breath....I miss him SO much.  His little face pops up in my head all day and all night.  God!  I loved him.  IT ISN'T FAIR!!!!!!!!!!!

Be nice to me!  Lower your expectations of me.  I LOST MY BABY!!!!!!

Especially if you are someone whose role in life is to love me unconditionally.  Try to actually love me unconditionally.  I don't have the energy to do that for you if you aren't doing it for me.  

Stop asking me if I am "able to connect to Mo".  Yes, I am able to connect to Mo!  I am obsessed with Mo.  I love him wildly and madly.  I am not a monster....I am a loving mother.  My boys are everything to me.  

I don't know....I can't eloquently string my words together today in any way that is coherent and interesting.  I feel so beaten up (so beaten up by people who see themselves as beaten up by me...so go figure).

I am tired and sad and devastated.

I am just so tired of the whole thing...I am SO DAMNED TIRED OF IT ALL!

Mo at one month

Mo is one month today...if you count Monday to Monday.  Otherwise, his one month birthday is Thursday...if you count by the calendar date.  

This is a little bit about Mo at one month.  He has a somewhat reliable "schedule".  We wake up at 11 am, which is unbelievable and awesome.  Then, he is up for an hour or two and nurses practically the whole time before he goes back to sleep for about 2-3 hours.  He then gets up around 3 pm and basically nurses until bedtime (he takes 5-20 minute breaks between sessions but not much longer).  Then he goes to sleep a little earlier than us and we sleep until 11 am nursing throughout the night but never keeping me up too long (of course I wrote this yesterday and last night I was up for 3 hours with him plus another two off and on).  He is an EASY baby....another way he reminds me of my Maxie.  I hope those aren't my famous last words.  

Some other stuff about Mo - He is a big boy.  He weighs 11 pounds and he is wearing Carter's size 3 months onesies.   Right now, he is going through a bit of a baby acne phase, he is losing his hair.  When he is awake, he is super alert.  He smiles and sometimes even laughs in his sleep (seriously, he laughs.  It is hilarious).  He is an amazing cuddler.  He makes little contented sounds when he sleeps.  He hates being swaddled (my boys BOTH hated being swaddled - they like to be hands free!).  He is happiest when he is being held - sometimes crying and crying and then stopping immediately when he is picked up.  That being said, he hardly cries.  He is a lovebug.  

I can't believe it has been a month.  It has gone by so quickly.  One month down.  We are celebrating Mo's birthday every month over here.  He is a very important and special boy!

Looking for a nanny

I am half engaged in a process of looking for a nanny.  I say "half engaged" because I cannot fully engage.  It is about the last thing on earth I want to be doing.  I just want the perfect Nanny to show up.  When I was pregnant with Maxie, I was positive I wanted a daycare for him and not a nanny.  Something about leaving my baby alone with just one other adult playmate in my house sounded entirely not stimulating.  Daycare sounded like fun!  Other age appropriate playmates and always something going on.  With Mo, the answer is a nanny: because I am going to be at home working and because I don't plan on leaving this kid's side or with anyone other than his dad or grandparents this year if I don't have to.  But, I do need someone to help me while I am working.  Someone to take care of Mo, feed him when he is older, change diapers, hold him, watch over him and help me with some light "housework" (emptying the dishwasher and doing some laundry).  So, I'm putting it out there (here): I need someone M-F from about 8 or 9 am - 1 or 2 pm.  I live in Burbank, CA...very close to Glendale, in the Rancho Equestrian neighborhood.  A few friends have already been helping me out (Thanks Amy, Jess and Bianca) and I have interviewed a couple of nice ladies who just weren't quite right.  I'd really love someone who had CPR/First Aid certification but I will gladly pay for the class for the right person.  I'm looking for someone sweet and understanding.  They should probably know upfront what our family story is because the right person will be empathetic and gentle with this broken bunch.  The right person will understand that they will be sharing Mo's care with his mommy.  My house is tiny and I will always be right there.  Anyway, if you have any hot leads - you know where to find me.  I go back to work at the end of October.  Mo and I are really enjoying spending time just the two of us for now.  He is just delicious!

Moody

I had a roommate in college who was moody.  She's still one of my closest friends and I'm sure that what I'm about to say, she'll agree with.  Sometimes she'd come home or wake up in a bad mood and my "Good Morning!" or "What's Up?" would be met with a no-eye contact grunt.  It was her way of saying "You probably oughta back the eff off"...which I always then did.  Most of my college friends have lived with her at one point or another over the years and we all had the same experience.  And, truth is that even though at first it was hard not to take personally, we all learned that it was NOTHING to take personally.  She's just moody.  That is all there is to it.  She is the first to admit that she can be tough (and I am sorry, my friend - you know who you are, for using you as an example here...you know I love you....winkie face!;))

Not long after we lost Maxie, I heard from another bereaved mommy.  She gave me some advice to apply to my marriage, something that really applies to most of our relationships.  She told me that no matter how distant the other one seems or how angry they act, it isn't about US...it is about the circumstances of our loss.  I actually can't remember if I shared this advice with Ted...I know I sent him that email because there was a lot of other stuff in there worth sharing as well.  I feel very lucky that he just seems to know, but sometimes it is easier than other times.

There are days when I cannot muster a smile, days when I can hardly make eye contact because I am so beaten down, so crushed.  He has those days too, though they are less frequent than mine.  It can be hard to not take it personally.  Sometimes one of us needs to remind the other one that it isn't about them - that we are just in a bad mood.  We don't then need to explain WHY, we both know why the other one feels down.  It is obvious.  I can see where this communication barrier alone could ruin a marriage.  I am grateful that my marriage has not suffered because of our loss.  I think we have given one another the space to grieve, each in our own way.  It hasn't been easy for either of us.  Another bereaved mother asked me the other day how I comfort Ted when he is down.  I told her that I don't.  That doesn't mean I don't try...it often means he won't let me in to do so....and that's ok.

The truth is that this isn't only something that exists in a marriage..because I don't miraculously perk up when someone else comes around.  I will never forget Maxie's first birthday - a day we "celebrated" with friends and family - a day we celebrated without Maxie.  I could not lift my head to make eye contact with anyone there.  I didn't want to see their pitying looks, their cocked heads, their uncomfortable smiles.  I wasn't sure what kind of a face I could muster up once my eyes met theirs.  Would I smile?  I couldn't do it.  I remember my dad pulled me into my bedroom and asked me, "What's wrong?"  "Max died", I replied.  I have had that same exchange with many - many times - as I've cried and cried - "What's wrong?", they ask.  Max died.  The whole world is wrong as far as I am concerned.

In the past year a lot of people have left my house thinking I was mad at them.  I am sorry for that.  Well, let me rephrase - I am sorry that they took my agony personally.  I am not sorry that I am in agony.  It has been beyond my control.  But, I have felt guilty that every time Ted's family has come to visit in the past year, I haven't been a good hostess (and THAT is the understatement of the year.  I can hardly get off the couch.)  I can only hope that they understand that my sorrow is not a reflection of them.  In fact, it has nothing at all to do with them.  Every single time my mother has spent any time with me over the past year, she has left wondering why I am mad at her and no matter how many times I explain that I am mad that Max is gone, she's not buying it.  She is convinced that I am angry at her, that my complete devastation has something to do with her.  How do I convince her that my bad mood has nothing to do with her?  I guess I can't.  I sometimes try to fake "better" and that seems to work, but I haven't got it in me to keep it up.  The LITERAL worst thing I could ever imagine happening in my life DID.

I wonder every day how I will go on without my sweet Max.  Since Mo arrived, it has felt easier.  I can see a future, even though I am living with deep feelings and looping flashes of fear.  Still, I am moody.  I am so so moody.  And, I whereas I used to only have one mood - DARK - I now vacillate between feelings of horror, devastation and trauma and THEN pure, exuberant joy for my little Mo. I AM Moody.  Try to keep in mind - it's not a reflection of how I feel about you - it's just how I feel.

Preventative medicine

On Wednesday, we saw a pediatric hepatologist (liver specialist). This is the appointment that I have been pushing for, the one I kept asking the geneticist and pediatrician for a referral for but that they didn't give me. So, I got the appointment in an around about way. Courtney (my high school friend and doula) suggested that I visit the office of a pediatrician/consultant that she is friends with. This woman (who was wonderful, by the way) referred me to a patient relations person at Children's Hospital. The woman at Children's had me send Maxie's file for a physician to review there and then that physician referred us to two specialists – the SIDS specialist that we saw last week and the hepatologist that we saw yesterday. As you may or may not recall, we were told that the one very unusual finding in Maxie's autopsy report was that he had a “fatty liver”. That is what led us to do genetic testing – it was potentially an indication of an inherited fatty acid oxidation disorder. The geneticists did not find that Maxie had a fatty acid oxidation disorder, but they did find that he and Ted are both carriers of one. We brought Mo to the geneticist the week after he was born so that they could take a tissue sample to see if he is also a carrier. We are waiting for the results of that test. My feeling has been all along that we should see a liver specialist, who might be able to tell us how Mo's liver is doing and who might have additional views on what could have gone wrong with Maxie and provide further recommendations on preventative “treatment” for Mo.

It seems that the other doctors we have been working with are uncomfortable with my wanting to treat Mo preventatively for whatever his brother may have had. I am not sure why. This is how I see it – although most children will not die from sleeping on their tummies (most children of my generation were placed to sleep on our tummies afterall and we are still here), we are encouraged to put our children to sleep on their backs just in case they are one of the unlucky ones who cannot tolerate tummy sleeping. I have had the incredible misfortune of losing my firstborn child. A boy I loved more than life. I want to do everything in my power to ensure that I never have to live through that again and that (more importantly) that my Mo is ensured a very long and healthy life. I love him wildly. He is a blessing that I do not take for granted. He is delicious and beautiful and strong. The treatment of the disorder that Maxie and Teddy are carriers for is actually quite simple – the baby needs to eat every 3-4 hours (no sleeping through the night) and takes a supplement. It is a natural supplement, an amino acid that is naturally produced in all healthy people.  When Ted and I asked the pediatrician and the geneticist about giving Mo the supplement, they expressed the opinion that they aren't comfortable prescribing the supplement if the baby isn't sick. Now, I must point out – there are no negative side effects from taking the supplement. None. They just felt it wasn't necessary. When I have suggested it, I have been shut down almost immediately. I stopped suggesting it months ago.

I didn't have high hopes for our hepatologist meeting. And, I don't even know what constitutes high hopes anymore. But, I figured we'd go in there, he'd probably tell us about the back to sleep campaign, maybe tell us that we cannot know the condition of the liver without a biopsy and then we'd leave – knowing we'd gone to the appointment because we had to but that it would probably feel it was a waste of time. Imagine my surprise when HE suggested that we give Mo the supplement.  I didn't even bring it up, he did.  Imagine my surprise when he offered to look at the heart and liver slides that the coroner has from Maxie's autopsy. Imagine my surprise when he offered to coordinate getting the slides from the coroner's office without us having to make one more call or send one more email to them. He said that Maxie's liver was only mildly fatty (something I had only heard for the first time at this appointment) and that the story didn't make sense to him either (none of the doctors we have seen actually believe that Maxie had this genetic disorder. None of them can make sense of the story we've been given about Maxie's death.)   But, he said that he is a father too and that he wouldn't take any chances at all with his next child and that, since there is nothing harmful about administering the supplement, he saw no reason why we shouldn't do just that – preventatively. He offered to call our geneticist to explain why he felt it was an important precaution to take.  I received a phone call from the pediatrician and an email from the geneticist yesterday agreeing to prescribing the supplement.

All I can do is ALL I can do. I SO wish I had a life where I was just enjoying my new baby. As Ted says – I wish we could just be the kind of people who could go out and enjoy the day. That is not who we are – Ted has not given up that we might someday be those people again. Mo and Ted bring me joy but sometimes I fear I will never feel true happiness again. I fear that I will never be myself again. The best chance I have is in raising this boy – who I am watching sleep so sweetly as I write this post. My survival is dependent on his – so perhaps everything I do for him is entirely selfish. So be it. I died when Maxie died. Mo has given me a chance to be reborn and I am not going to throw away that opportunity.

Rage

I am raging!  I am beside myself with RAGE!  I am raging because MY MAX DIED!  I am angry as all hell that right in the middle of the most perfect point of my life - it all came crashing down.  I am not angry because you said or didn't say the right thing.  I am not angry that the world keeps spinning (although I find it totally unsettling).  I am not angry that you haven't been here for me.  I am ENRAGED that Max is gone.  He was the most lovely, sweet, adoring, beautiful boy.  He was supposed to go to the local temple for preschool and take a vacation to Hawaii with his daddy and I and go to the local schools (which are supposed to be wonderful - part of the reason we moved here) and visit with cousins and have playdates, and go to summer camp and have a bar mitzvah, and graduate from high school and and and and.....  MY SORROW, MY DEVASTATION, MY RAGE is because Max is gone.  Max is GONE!  I have no more Max.  I conceived him, I carried him, I birthed him - he is gone.  I sang to him, I soothed him, I rocked him to sleep - he is gone.  I loved him, I cherished him, I  felt joy and pride - he is gone.  THAT IS WHY I AM RAGING!  THAT IS WHY!!!!!!!

My Mo alarm clock

Babies are a natural alarm clock.  Mo makes sure to get us up every three hours.  

Watch it through.  I promise he does move.  

He must know about our need for a snooze button.  

He does this several times each morning before it is really time to get up with him. 

 I like the warning.

Blue

I've been pretty blue the past two days.  Really missing Max.  I STILL can't believe he isn't here.  I feel totally deserving of getting to watch my two boys grow up and become adults.  I am not sure why I won't get that privilege in this lifetime.  I want so badly to know what Max would be like now - talking, walking, playing, giving kisses and hugs.  I really do feel like we deserved that.  I really feel like Max deserved it.  My heart aches for him.  It is clear that the general feeling is that it is time for me to move on,,,I'm still not sure how to move on from my child.  He was so cute and sweet.  I was so connected to him.  I am constantly trying to reconnect.  The assumption is that Mo has taken all of my pain away. He hasn't...he's just brought the light back to my incredibly dark world.  And I love Mo so much! I can't wait for zoo days with him and merry-go-rounds and Disneyland and then I remind myself not to get too ahead of myself.  I hate that I can't daydream about our future together.

The Medium Part III

I have been playing part of a recorded conversation that I had with Moriah (www.moriahthemedium.com) back in December for some of my family members.  In the recording, she asks me about Mo's due date and I tell her it's July 27th (according to MY calculations of when "the deed" was done, Mo's due date was two days later than Dr. D's calculations based on whatever he bases it on).  She comments on how cool that is (she knows 27 is Ted's lucky number.  In my first reading with her, she asked me why she sees the number 27 surrounding my husband and I explained to her that it is his lucky number and that he sees it all of the time).  She then asks me if I am planning on having a cesarean section.  I tell her that I am not planning on it but if it happens, it happens.  Then she laughs and says, "I'm laughing, and I don't mean to be cruel, but it looks like you are going to have a very big baby."  "Ok", I say.  And she says "Don't be surprised if you get the 9 pound wonder.... between 9 and 10 pounds".  Mo was 9.52 pounds.  She also says he will have a lot of dark hair - which he does.  "A yarmulke of hair" is what she then calls it and says those are my grandpa's words and he is laughing.  And, though I didn't have a C-section, Dr. D thinks that I would have, had I waited until the due date.  She also tells me Mo would be very healthy and told me in both of my readings with her that "it" would never happen to us again.

Moriah is one of the three mediums that have given me very accurate readings over the past year.  And, again, I KNOW that the whole business with mediums is controversial and that you may not believe in them and whatever else but perhaps you will forgive my silliness when you put it in perspective.  I am devastated and heartbroken.  The three mediums that did these amazing readings for me brought me more comfort than anything other than Mo has been able to give me since I lost my Maxie.  I am writing about them again because enough of you have told me that you believe or that you are interested.  I figured it was worth a follow up post (and probably several more as time goes on.)

The medium that I met with in Phoenix also predicted Mo being large...and late.  Obviously we don't know if Mo would have been late.  I wasn't patient enough to wait and find out.  He knew I was pregnant with a boy this time.  He told me that this baby was going to look like and remind me so much of Maxie.  He is right.  As Ted says, sometimes when we are cuddling up with Mo, it feels like we've gotten into the Delorean and literally gone back in time to when Maxie was this small.  That medium talked about a bunch of other stuff as well that he could never have known about.  He talked about a basket of nail polish that I received as a donation for Maxie's benefit.  He talked about a trip that Ted and I have been planning to Hawaii.  Most importantly, he knew exactly how Max died (well, he knew it was "SIDS") and he knew how old Max was when he passed.

The most amazing medium I spoke to was in March.  It was over the phone.  She was so accurate with everything she said that I thought (and still wonder) if she had found my blog ahead of time.  She rattled off my parents names, my grandparents names, Max's cause of death, Beth's name, Paul's name.  She knew that Beth was raising money in Max's name, she knew that we were planting trees in Max's memory, she knew that we were seeing geneticists to figure out what had happened.  These ARE all things she could have found on my blog.  But, she knew stuff that my blog couldn't have told her.  She knew I was pregnant and we hadn't yet told anyone but our parents.  She knew Ted's middle name, which I don't think I have posted anywhere (Michael).  She knew my father-in-law's first name and his brother's middle name.  These are things she couldn't have found on my blog.  There were many other things that she knew but couldn't have researched about us (and really, I wasn't paying her enough for all of that research to have been worthwhile.  Just reading all of my blog would have taken at least a few hours).  It still blows my mind to think about it.  If it was a trick somehow, then this woman is a master of trickery.

All three mediums promised me that we would never lose another child, that "this" would never happen to us again.  All three mediums said that we would find happiness again.  All three said that the next baby would be a girl (it's never too early to start thinking about the next baby, is it?).  To this day, I can't tell you with any certainty whether I believe or not.  What I can tell you is that believing has given me some peace of mind when I have needed it most.  What I can tell you is that the idea that Max is "out there" waiting for me brings tears to my eyes and hopefulness to my heart.  The idea of our reunion gives me more joy than you can imagine.  With Mo here and Max there, I have a lot to live for and look forward to.  I wish with my whole heart that it could be different, but it isn't.  And in the absence of the life I truly believe we deserve, these promises of a "life" with Maxie again one day is what I am clinging to.