Half Smile

Thursday, August 30, 2012

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

Wednesday, August 29, 2012

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.







If you can't beat 'em

Monday, August 27, 2012

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

Sunday, August 26, 2012

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

Saturday, August 25, 2012

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

Friday, August 24, 2012


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

Thursday, August 23, 2012

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

Wednesday, August 22, 2012

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

Tuesday, August 21, 2012

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

Monday, August 20, 2012

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

Sunday, August 19, 2012

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

Saturday, August 18, 2012

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

Friday, August 17, 2012


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

Thursday, August 16, 2012

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

Wednesday, August 15, 2012

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

Tuesday, August 14, 2012

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

Monday, August 13, 2012

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.

More photos from Mo's bris

Sunday, August 12, 2012

These photos were taken by Teddy's Aunt Jan.  She took wonderful shots at Maxie's bris too.

















Ted held Mo up high like the Moyel did with Maxie at his bris.  It was our favorite moment of Maxie's bris.  It reminded us of The Lion King.  It made me so happy to see Teddy showing off his second little boy in the same way.  I am so glad Aunt Jan caught a picture of it.

P.S. - Mazel Tov to my good friend Tamar and her soon to be husband, Mike, who are getting married today.  I am very sad to be missing this awesome celebration.  Tamar and Mike are on the left side of the very first photo.  They met at the wedding of our friends Greg and Ayala two summers ago when I was pregnant with Maxie.  I remember them flirting at our table.  I love that I was there for the start of their romance.  They didn't register for gifts but instead asked for donations to their honeymoon fund and to several charities that are important to them, including Maxie's First Candle Fund.  We are very touched by this act of generosity!  So excited for the start of their life together and wishing them nothing but happiness always!

Appointments

Saturday, August 11, 2012

On Wednesday we took Mo to see a SIDS specialist at Children's Hospital.  It was an appointment recommended by a lead physician at the hospital who reviewed Max's file.  I wasn't sure what the point was honestly because the fact about SIDS is that doctors are unable to predict which babies will die.  The babies that die of SIDS are healthy babies.  So, what was this SIDS specialist going to be able to tell us?  Also, and I still don't understand this one - how can someone be a specialist in something that nobody really knows anything about.  But, we took Mo down there anyway because we are committed to doing everything we can to ensure his health.  There isn't much to tell.  The doctor checked Mo's reflexes, listened to his heart, pushed on his belly a little and then told us about the "Back to Sleep" campaign and the other stuff we already know about SIDS (all of the inconclusive stuff that "seems" to lower the SIDS risk, that we already did with Max, that didn't make a difference in saving his life).  Ted and I agreed that the appointment was a waste of time BUT something we had to do.

The next day, we saw Mo's pediatrician.  She gave him a regular newborn check up.  She asked if we had any questions or concerns - we didn't really.  I asked her about vaccinations.  I told her that we planned on vaccinating but wanted to space the shots out.  She kind of laughed a little and told us that there is nothing that shows that vaccinations cause SIDS (or autism or anything else).  Fine, regardless, we want to space them out.  I am not sure why it is so hard to understand that my child died and so, therefore, I am a CAUTIOUS mother.  I was cautious with Max too so any neurosis I had to begin with have been amplified.  This is a VERY special little boy!  Our whole lives depend on him.  Ted thinks she was just saying that because that is her script.  Also, what I interpreted as a little laugh, he thought was merely her being "smiley".  I take things personally (probably too personally most of the time).  I also told her that next week, we are taking Mo to a GI specialist to talk about his liver.  Ideally, I would like to have it checked throughout his first year to ensure (if possible) that he hasn't developed a fatty liver.  I had called her a couple of months ago for a referral and she said that she would talk to the other doctors in her practice and get back to me. She never did.  The doctor we are seeing was referred by the physician at Children's Hospital who reviewed Max's file.  When I brought it up to her she said that she and the geneticist had spoken and thought it wasn't a good idea because they were worried that Mo might develop a complex - that we would treat him like a sick child without any cause for believing he is sick.  Ted and I have no intention of treating Mo like he is sick.  We would like to rule out any issues that could have caused Max's death.  I honestly don't see why that is so hard to understand.  It just seems like they are working against us, even if they might have the best intentions in the world. Ted doesn't agree.  He thinks that they are just bringing up possible issues that might arise.  But I honestly don't understand why they didn't just recommend a hepatologist/GI specialist to us.  Why did I have to go out on my own to find one?

All I want to do is rule out anything that could cause this boy harm.  If I had had that opportunity with Max, he might still be here today.  He might not.  I have no way of knowing...since I STILL DON'T KNOW WHY MY BABY DIED!  Morris is probably a perfectly healthy boy in every way but wouldn't you want to make sure, after losing a child, that his little brother didn't have anything wrong with him that you might not be able to see?  Also, he is only 3 weeks old!  I am not that worried at this stage about his developing a complex.  In fact, now is the very best time to worry about him without worrying that it will affect his psyche.  The complex I might be giving him at 3 weeks old does not keep me up at night.  Ted and I are on the same page (he is just more understanding of the various doctors' intentions than I am).  Mo has saved our lives.  He has literally saved my life and I will do everything in my power to make sure that I save his if necessary.  I love him madly.  

Why I write

Friday, August 10, 2012


In the days and months (and weeks and year) following Maxie's death, my previously clear communication with family, friends and colleagues became completely muddled and unintelligible. I know they stopped understanding me because they said so all of the time "I can't imagine"... "I can't begin to understand..." etc...and I stopped understanding them also.  I kept hearing them but I didn't listen very much.  Their voices repeating the same meaningless phrases - meant to sound comforting but giving very little comfort - and sounding more and more like the teacher in the Charlie Brown cartoons. They were doing their best, and I was doing mine- presenting a "happy" and welcoming face at the funeral and Shiva, trying to make people comfortable in my pain. I was being my most inauthentic self. I felt ashamed and misunderstood. I felt I wasn't doing justice to my most beloveds memory.  Nobody who felt as worthless and devastated as me would really be worrying about cold cuts and small talk.  I craved understanding - both to understand what it was that the people around ms really felt about this loss of our Max and also, of course, to be understood. I had lost Max- the person in my life I was least likely to lose.  The person I had waited my whole life for, who I loved more than life itself or anyone else in it, was gone in an instant.  I couldn't see one minute in front of my face.  I wanted to be with him.  Honestly, I wished I was dead.  Life had betrayed me and to go on felt exhausting.  I remember looking outside the window at the trees and the birds and the sky and thinking that the earth had betrayed me.  There didn't seem to be any point in anything anymore.  And while all this was going on in my head and heart, people were trying to "drag me out" to "do lunch" or go bowling or to get drinks.  I could hardly make sense of my own existence, but I was bottling it up and nobody even came close to understanding how much I wanted to be done (nobody except Ted of course).

The words people were saying to me hurt so much, the easy dismissal of my pain. At the height of it, Ted was hospitalized and I feared I would lose him too. I remember friends coming to visit Ted in the hospital, a week after Max's funeral, and they played on their blackberries and iPhones and made small talk while I literally wondered from second to second if I would keep breathing.  My life felt totally over.  Just another day for everyone else was a completely crushing experience every minute for me.  It may sound dramatic but why would I trust that Ted would be ok after my perfectly healthy nine month old baby just stopped breathing for no reason two weeks before?

I remember Bianca mentioned blogging.  I don't even know how it got brought up but I thought - If they knew how I felt- if they could have even a glimpse into this darkness, maybe they would try harder.  Maybe they would stop hurting me so much.  I naively believed that if I could give them a window into my pain, they would be more gentle with me- and stop pushing ms to "put one foot in front of the other", stop talking to me about idle gossip or the current stressors in their lives (that usually amounted to a girlfriend who watches too much tv or a planned vacation that didn't look like it was going to happen). If they had an inkling of what a beautiful soul my Maxie was, maybe they would stop acting like some generic baby died that could be replaced when I had more children (something that they made sound so easy.  I just had a new baby and nothing about conceiving, carrying or birthing him was easy). Maybe if they knew Max a little they would understand better the depths of my loss.  (Even though the ones who knew Max best and loved him the most participated in the minimizing of our pain - certainly I could not paint a more accurate picture of Maxie than the one he actually lived for his family and caretakers).  

But, I started writing and I decided to do it every day for a year.  I hoped to protect myself from the hurt by giving the most authentic picture of my pain possible.  If I put it all out there, maybe it would help me release the demons.  If you knew how terrible it really was, maybe you would stop acting like nothing happened, like any day of the last year was just another day. Because in fact, no day of the last year was just another day for us.  Every day was a complete struggle to get through for both Ted and I.  It was a year that tested our faith, our relationship, our friendships, basically everything we know.  I thought that if you knew that, you would acknowledge it.  I also knew that if I made it through that year, I could make it through anything in this life.  I wanted an account of my journey to remind myself that I had "made it" when I was further along.  I also wanted to record as many memories as possible of my sweet Max.  I still haven't done that.  There are still memories that hurt too much to write about and I am afraid if I don't get them down that I will forget them.  But, I think that I know now that that isn't possible.   I just didn't quite realize so early on that I would be struggling, loving and remembering for my whole life, not just one year.

I don't think my blog really protected me.  In some cases, it opened me up for anger and criticism.  But, I know now that it is impossible to protect yourself from all of the things that people say.  I am not even sure how i thought that was possible.  But, I do know that it gave some people pause.  That some people really thought about what they said before they speaking to me.  So, there's that. I also think that the blog has helped me to connect to other bereaved parents, some of whom have become people that I have developed relationships with - people who I actually really care for and whose children I never met but I love.  How strange to love a child you have never met...but I do.  I love Charlie, and Julius, and Madeline, and Catherine, and Toby, and Jayden and Lucy and Mackensie and Cora.  I really love them and I think of Maxie with them somehow.  It brings me a little comfort for some reason.  The blog has helped me keep Maxie's memory alive as well.  That is my biggest gift and one that is surely evidenced by all of the candles that were lit in his memory (I added all, if not most, of the candle photos that people continued to send me in the days following the post).  Writing the blog has given me a purpose each day to keep going, even when I just woke up and posted a picture.  I have felt, in my darkest moments, like I had to keep going because there were still stories of Maxie to tell.  I needed to keep waking up each morning to tell his story and ours.  Again, I know I am sounding kind of dramatic but, it is honestly what I thought.  I knew I needed to stick around to ensure his memory was kept alive.  I have felt he was counting on me, even if it was just me counting on me.  

So now a year has come and gone and I have not stopped writing, just as Ted did not shave off his beard as he originally planned on doing.  We both thought that something would change in a year...and while so much has (especially now, with the arrival of Mo), much has not.  Our love for Max has only grown, as a parent's love does.  My longing for him deeper with every day that he is gone, which would make sense I suppose.  And while, I don't feel like dying anymore...I am still looking forward to being with my Max again and trying to learn as much about where he might be until that day comes.  After a year (plus), I still feel compelled to write here every day.  And, I am not sure how long I will continue to do so but I guess I will just keep coming back here every day until one day I don't.  And, when that day comes, please don't think I am fixed, please don't think I am "better".  What I have learned for sure is that things change, whether we want them to or not, but the love of a parent for their child lives forever.  I will never stop loving him.  I will never stop missing him.  I will never stop feeling cheated that he didn't get the life I wanted so badly to give him.  He is always on my mind.  He is always in my heart.  I will love him forever and ever.  He is my baby. He is everything to me.  

Impostor

Thursday, August 9, 2012

Sometimes I feel like an impostor....like a woman pretending to be a mother.  And, I've noticed that people treat me like a first time mother.  Must be because they don't believe that I did a good job "last time", or they know that I am feeling insecure.  I am almost embarrassed to say this but, I really thought....I mean, I really, really thought, that I was a good mother.  In fact, and I actually thought that being a mother was the very first thing in my whole life that I was truly good at.

Being Maxie's mommy made me very happy and secure.  I felt like my very best me when I was mothering him.  I heard about other parents dropping their kids at daycare on Mondays and saying how grateful they were to get back to work because their kid was driving them crazy all weekend.  I didn't feel like that.  The truth is that I felt more in my element at home with Max than I ever have, doing anything else, ever before.  And, I didn't need a girls night out or feel deprived that I didn't have a booming social life anymore.  In fact, getting out socially felt like more of an obligation than being home with my baby even though my friendships are so important to me.  I tried to find low key ways of connecting with friends so that I wouldn't interrupt naps or be out at night without Max.

That doesn't mean that I didn't have questions or insecurities.  I did.  Every new mother does.  But, I truly believed that I was good at finding the answers to my questions and that I was doing a good job.  And now I feel like an impostor.  I can't convince anyone that I was (am) a good mom..and why would anyone believe me anyway?  My son died.  And I am afraid of even thinking of myself as a mother yet.  I have allowed myself to get very emotionally attached to Mo (and it scares me to death) but I don't want to let myself get too attached to my new (old) role as a mommy.  This time, I am second guessing everything.  A few nights ago, Mo fell asleep on Ted's lap on top of my Boppy pillow and I got nervous.  Boppys are not for sleeping...it says it right there on the tag.  Mo often falls asleep while breastfeeding or on my shoulder after I burp him.  I won't let him stay there for too long because I am too nervous.  I worry about everything that I do with Mo...the same things I did with Max that I felt so secure about.  I thought I had motherhood down.  It felt so natural to me.

Here I am with my second little boy and I can't make any mistakes.  I could never live through it again.  I am hardly living through it now.  Losing a child is unlike any terrible nightmare you could ever imagine.  It will have you questioning everything you thought you once knew.  You will question your choices, your relationships, your priorities...everything.  The worst questions I have are of myself.  They bring me to my knees as I question myself relentlessly.  As a mother you need to trust your instincts - something that was taken from me when my Maxie died.  Now, I need to learn to trust myself again and it is so hard.  But, I need to figure out how to do it.  Mo is depending on me.    

Little Maxie

Wednesday, August 8, 2012

Babies change so much, so quickly.  And although Maxie only lived nine and half months, the Maxie that I have spent the whole last year missing so violently is the Maxie of the last 3 months of his life.  I have been missing the Maxie that held his head up and smiled widely and loved yams and greek yogurt.  Having Mo here is a reminder of my early love of Max.  Mo is a reminder of the purest, sweetest love that grew by the minute during my first days with Maxie.  I can't help but remember all of the funny little things he did - the funny faces and squirmy little movements.  I have more to miss now because I remember even more.

I always knew that I wanted children but I had no idea what I was in for.  I had no idea that I would fall madly in love the minute I held my little baby.  And, while I was pregnant with Mo, I am somewhat ashamed to say that I was sad to have to go through the infant stage again.  I felt that the six month Maxie was my reward for all of the early work.  I forgot how much I actually loved those early days...and I really loved my early days with Maxie.  I remember people telling me that having a baby was like falling in romantic love - only better.  It is SO much better!  There is no game playing or worry that he doesn't love you back.  And, you don't feel vulnerable to loss - you know that you are going to grow old with this little guy....only, that isn't how it worked out for me.  I only got nine and a half months with the love of my life.  It makes me sick to my stomach thinking about it.  But, I digress....here are some photos of my little monkey from the early days.  The really special, wonderful, early days.  I miss them and him so much.  I cannot believe I have lived this long without him.  It boggles my brain.







Up all night ....at last

Tuesday, August 7, 2012

The night before last, we were "up all night".  Mo had a little tummy ache or maybe he was just restless....who knows?  But, I figured that yesterday I would just sleep when the baby slept...only, he didn't sleep.  He was crying and crying and crying unless I was holding him.  As soon as I picked him up, he would stop.  But holding and rocking a baby, while so loving, isn't super restful.  My mom had called and asked if she could come over and since it didn't look like the nap was going to happen, I told her to come on by.  Of course, right before she got here, he finally fell asleep.  She didn't stay long because she wanted me to get some rest.  Two minutes after she walked out the door, Mo woke up and started crying again.  The truth is that I was kind of starting to lose my mind.  But here's the thing - as tired and frustrated as I was...it was 10000 times better than any day I had during the long year between losing Max and Mo's arrival.  10000 times.  I LOVE this baby.

I miss Max

Monday, August 6, 2012

I miss Max SO much and I blurt it out like a non sequitur all of the time.  I usually am compelled to say how much I miss him when we are enjoying a good joke, or watching something on television, or gazing lovingly at Mo, or sitting around with family talking about what's going on with them, anything else that might bring the people around me a brief period of joy.  I squash the joy immediately because my missing or Max is so soul crushing that I can't stop myself.  And, I feel like I am betraying him by enjoying the joke, or the show, or the story or even Mo.  How can I allow joy to happen when he is not here?  I am a terrible person.  Of course, I am just as terrible for not allowing joy to happen.  I won't give anyone, not even my husband, a respite.  It causes some of the worst tension in my life - with my husband, with my parents, with other family.  Ted misses Max too - in the same soul crushing way.  But, he doesn't say it all of the time....because, as he says, where does that get him?  When I say it, mostly he doesn't respond...because what is there to say?  When I say, "I miss Max", I guess I am hoping that I will hear back, "I miss him too" but that isn't fair of me.  I am forcing a moment.  I am forcing pain into a joyful moment.  I don't know why I do it except for that underneath everything, I feel so much pain.  Honestly, I didn't think it was possible to feel this much pain.  But, when I think about Max, I wonder how anyone would expect a mother who has lost a nine month old baby to feel anything else.  Still, I should know by now to keep it to myself.  When I say it out loud, it gets me nowhere.  Nobody says a thing (and they shouldn't.  Their reasons are good.  It hurts them to talk about it).  I don't feel less pain for having said it.  In fact, it often makes me feel more pain because I isolate myself by not enjoying the joke, or the movie, or the story (I always enjoy Mo...I just wish Max was here to enjoy him as well.  We'd probably be calling Mo "Mini-me" because he is such a mini Max.)  I isolate myself by expressing my hugest pain and getting no response.  I keep promising that I will stop but it is just sitting under the surface of everything and it is killing me.  So, I'll continue to say it here, at least, and work on shutting myself down more in the company of others (because eventually, nobody will want to be around me).

I miss Max!  I miss him so much it hurts in my heart - I can feel the pain in my chest!  I miss him so much and it is SO unfair!  It is so unfair that I have to learn to live without him!  That I have to "find a place for him"!  That I have to find a way to be graceful through all of this pain.  It is so unfair that he won't get to live the life that he deserved.  He was sweet and happy and smart and loving and loved and he is just gone off this earth and it makes me sick and sad all of the time.  I miss Max!  I long for him!  Part of me is dying to get to the end of this life so I can be with him again!  I miss Max!  I MISS MAX!  I MISS MAX!  I MISS HIM!  I MISS HIM SO MUCH!  Oh my god!  I miss him.  I miss my baby.
There, I said it.

I miss him.

I miss him.

I miss him

Mo at (almost) two weeks

Sunday, August 5, 2012

It's weird how you can feel like you know someone so well who you have only known for two weeks.  I know Mo better than I know some of my best friends.  I feel like I have known him always.  I think that part of that is that he reminds me so much of Max.  It is both wonderful and very very scary.

Here are some of the things that make Mo at 2 weeks:

Mo is very hungry.  When he wakes up during the day, he nurses for 20 minutes on each side and then goes for one or two more rounds!  He latched on perfectly in the hospital and has been a natural ever since. And though I really believe that he is terrific at breastfeeding, my breasts might disagree - ouch!

Mo sleeps awesome at night.  He sleeps for three hours at a time, gets up when he is hungry and then goes right back to sleep.  I am up with him for no more than 30-40 minutes at a time.  Ted and I are getting lots of sleep (famous last words?).  I literally haven't slept this well in a year.

Mo can sleep with the lights on, people talking, dogs barking, and the Olympics blaring.  I remember this stage.  I am sad to remember that it is just a stage.

Mo smiles when he sleeps...and not just "gas" smiles.  He really smiles - mouth open and turned up at the edges, eyes squinted, cheeks engaged.  I've never seen a baby smile like this.  I have tried to get a picture but you just never know when a smile is coming.  They are awesome.

Mo is super snuggly.  He is a great cuddler, especially right after I have fed him and I've got him on my shoulder to burp.  He snuggles in and coos and is warm and sweet.  He smells like heaven and I can't stop kissing him.  He is a total dream.  I am crazy in love.

Mo is a healer.  He just is, whether that is his intention or not.  We are smiling again.  We are happy again even though we are still devastated.  The crazy mix of intense emotions all live together and sometimes it is so overwhelming I think I might burst but, there is no doubt about it, we are so absolutely blessed by this sweet boy and he has done more healing in two short weeks than all of the therapists, spiritual guides, prayers, mediums, blogs, books and everything else.  He will never, ever replace Max, but he is a gift for whom we are both so incredibly grateful.

Morris Lee Leviss - your arrival into this world has opened your mommy and daddy's hearts again...even though I am SO scared.  We love you more than I can put into words.  I could stare at you all day long.  My heart is soaring out of my chest with love and pride for you.  You are beautiful and so special.  Thank you so much for coming into our lives.  I promise with everything that I am to give you the very best life you could ever want.  Please stay here with us - please, please don't leave us.  We promise to make you very happy.  We love you baby Mo....to the moon and back.




Elephant

Saturday, August 4, 2012

Maxie's "animal totem" is/was a monkey.  Everything we got him had monkeys on it.  We even called him our little monkey.  We knew right away that little Mo was going to need his own animal.  Mo's animal came to my yoga teacher/therapist in a vision around the 120th day of my pregnancy.  I was talking to her about how worried I was for Baby M's future.  We did a meditation on him to send him health and longevity.  When we opened our eyes from the meditation, she told me that she had a vision of Ganesh, the Hindu elephant god of success: destroyer of evil and obstacles.  Could there be a more perfect totem for our rainbow baby?  


And what is really cool is that family and friends keep bringing over elephant stuff without even knowing.  We never got one elephant thing for Max.  We got so many monkeys and other animals too but never elephants.  Mo has got elephant pjs and onsies and stuffed animals and books and a personalized towel with an elephant head and his name on it.  Of course, I don't think I'll be calling him "my little elephant" any time soon (although with the way he eats, you never know).  Perhaps, my little "peanut" will do?

This time

Friday, August 3, 2012

Everyone I talk to assures me that what happened to Maxie will not happen to Mo.  I haven't figured out what makes them so sure.  Mo doesn't seem any more healthy than Maxie did...even though people keep saying "Mo is healthy!"...so was Maxie.  But, everyone says, this time I have an awareness of what could go wrong.  I am not sure how that awareness changes anything.  It has been implied that "last time" I was a first time mom so maybe I made mistakes.  What mistakes did I make?  I was very careful.  VERY careful.  My Maxie was very well cared for by me and I was cautious.  But, this time I can do things differently.  Like what?  I could vaccinate differently or not at all...but I don't really believe that it was a vaccination that killed Max (neither do any of the doctors), so how will that help Mo?  (Was my mistake trusting doctors?  Who else am I supposed to trust?  All I know about babies is what I have found in the many books and websites that I have read through since Max was born).  I am staying home with Mo and didn't stay home with Max.  Most every mom I know has had to put their child in daycare or use a nanny.  Obviously I will never know what happened at Maxie's daycare that day.  The idea that there may have been an accident makes me want to die but is the implication that Max died because we made the very hard decision to send him to daycare?  You use a nanny, babysitters, and daycare and your kid is still alive so what gives?  I have logged on to Ted's Facebook page and I have seen photos of friends co-sleeping, with loose blankets, and tummy sleeping babies.  I never did any of that and my child died.    Two days before Max stopped breathing, we went to a birthday party where a mom left her newborn baby sleeping, face down on a blanket in the yard unsupervised and went inside to get a drink and socialize a bit with the other parents.  Ted and I were in the yard watching the baby (not that we were asked to, but it seemed like someone had to take responsibility for this child) and a guest nearly stepped on her.  That baby just celebrated her first birthday....but I am the bad mother.  And, no, nobody has actually come out and said that it was my fault, but that is what I hear when you tell me that "this time" will be different because I will do things differently.  The implication is that "last time" I did something wrong.  And, don't you think I beat myself up every single day?  I can't believe that Maxie isn't here.  I am dying without him.  My only respite from the pain is my love for Morris....and I am not really doing anything differently with Morris so far.

On Wednesday, we went to see the geneticists, so that they could take a tissue sample from Morris's forearm, to test for the disorder of which Ted and Maxie are carriers.  The geneticists don't even think that this is what killed Maxie.  We are being extra cautious and protecting him as best we can but how do you protect a baby from something that can't even be identified?  I am completely frustrated, stressed and worried.  What can I possibly do "this time" that I didn't do last time?  It is a mystery to me and totally crazy-making.  Will this time will be different because I have learned something since last time?  I haven't learned a thing and even if I had - the implication is that Maxie my "starter baby" to figure out what works and what doesn't work and "this time" I can apply those lessons to ensure that Mo lives.  Maxie was loved (IS loved), well cared for, and the center of our universe - the very most important thing that ever entered our lives.  I miss him more every single day.  If I could have prevented his death and didn't, then I wish I wasn't here anymore.  The burden is just too great for me to bear.

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