Regrets

There is so much I regret from the time surrounding Maxie's death.

I hate how I acted during the shiva.  I wanted people to be comfortable.  I wanted them to see that I was still here.  I wanted them to know I was strong.  I walked around making small talk with people, laughing at their stories and jokes, telling so many of my own.  I was in shock.  I think I figured I would be dead in a week or so and I wanted to make sure that my last interactions with people seemed upbeat.  I was trying to distract myself from the reality of my life.

I regret sending Maxie to the pediatrician that I did.  He was a little odd but seemed like a good doctor.  I kept thinking that I would change but then he grew on me and I just left it alone.  I don't think he is responsible for what happened - but I just don't know.  I hated the way he abruptly got off the phone with me and said, "these things sometimes happen" when he learned that Maxie died.  That conversation will haunt me for the rest of my days.

I regret that Maxie was in daycare.  I have to leave it at that because this is an especially complicated regret that I guess I can't talk much about.  But, if I could change one thing - this would be it.

I regret that I continued to expose myself to people who pushed me too much when I was barely clinging to life.  So much damage was done.  As I climb my way out of the hole, I keep finding thousands of new wounds.  It has taken so much work to just heal myself from those surface wounds - precious energy that I needed to work on healing the big, big, big wound.  I feel like I had to push away so much gunk to get to the actual pain.  Like I was bleeding to death and still being continuously stabbed by a thousand tiny knives.

I regret not knowing that something was wrong - even if there was no way to know - I am his mother.  In my heart, I can't escape the feeling that I should have known.  I regret that I couldn't save his life.  I regret that my prayers weren't good enough or loud enough or important enough to save Maxie's life.

I regret that I am alive and he is not.  He deserves life so much more than me.  He had his whole life ahead of him.  I have a lifetime of pain, living without him, ahead of me. It's not fair.  None of it is.  And sometimes I just feel embarrassed that I am alive and he is not.  Simple as that.

I miss him.  I am battered and tired and tired of crying all of the time.  I miss him.  So much.

The good part

The only good part about having a sick baby all week was getting lots of couch snuggles. 

My Little Peach

He's still a little grumpy.....but feeling much, much better.  And, most importantly - he is eating again!  The not eating thing makes me crazy....even if it is "normal".

He just grabbed this peach right out of my hands and started going to town on it.

If you build it...

Will they come?

In my former professional role, I was in charge of planning a large fundraising dinner every year.  Even though there were many other events that I planned throughout the year and I had a million other things that I was responsible for - I would spend most of the year stressing about that dinner.  In the months leading up to the dinner, I would listen to the "chill" station in the car, practicing deep breathing and repeating mantras to myself like, "It will all work out" and "The room will be filled and it will be a huge success".  I would often find myself imagining the Beverly Hills Hotel ballroom completely empty and it would make me out of my mind anxious.  Of course, it would always work out and though some dinners were more successful than others, I would always feel good about our event.

I have a little bit of that going on right now.  What if nobody comes to Maxie's Birthday Benefit?  If I build it, will they come?  I know you are coming!  So many of you have told me that you have.  But, it would really put my mind at ease if you would register.  If you haven't done so already, please go to www.firstcandle.org/maxie.  We do have a bunch of early registrants already (THANK YOU!) but I would like a whole lot more.  Please, please, please help us honor the memory of our sweet baby and help us to support an organization that is very dear to our hearts.  Working with First Candle has been such a lift for me.  Many of their staff are also parents who've lost children and they know how important this event is to us and they honor their own children when they help us.  It's really a community of people who know and share our pain - working hard to stop this mystery death from happening to anymore babies.

And - the event is going to be really fun.  What could be wrong with food and beer and brewery tours and children activities and a great silent auction? NOTHING.  You will have a really good time at our event, I promise.

Please take a moment today and register before I have to start listening to the chill station!  www.firstcandle.org/maxie.  And, if you cannot make it, consider making a donation!  You can use the same link to register and make a donation!

Thank you!

An impactful interview

I heard Michael J Fox being interviewed on Howard Stern yesterday. It had me thinking for the rest of the day about living life after an unexpected devastating life occurrence.  There were a few things he said that stood out to me.

One was that his initial reaction was that the diagnosis was unfair or that the doctor had it wrong.  I still feel this way all of the time. My son can't be the one that died of SIDS.  There are times I still expect to wake up from this nightmare and realize that we are fine.

The second was that his grief was so overwhelming that he spend a full year feeling angry, self medicating and full of fear and that the way out of those feelings was gradual and took a lot of work.  I don't even really need to explain how much I relate.  It took a full year to even begin to sort out my emotions and start to figure out how I was possibly going to live the rest of my life without Max.

 The third was that being diagnosed with Parkinson's made him realize that bad things could happen to him, which I am sure he hadn't given much thought to before that time.  He said that after the diagnosis, he kept waiting for the "other shoe to drop" and then people would remind him that the other shoe had already dropped - he was diagnosed with Parkinson's - everything after that would be a walk in the park.  I flip flop between these feelings all of the time.  I am almost surprised every morning that Mo has lived another day because my brain has been rewired to almost expect the worst.  On the other hand, I work hard to retrain it every day and remind myself that nothing (NOTHING) can ever happen again that will be as horrific as losing Max.  The "other shoe" already dropped.

The last thing he said that I keep thinking about was in response to the criticisms he received of how he handled his diagnosis because MAN, people LOVE to criticize people who are going through hell.  He said that that is when he realized how B.S criticism actually is because the only people that matter in the case of how he handles his disease is himself and his family.  That is it.

Bad Ass

We are going on day three of complete misery over here!  Mo woke up sick on Monday - like really sick - sleeping all day, high fevers, multiple dosage of baby tylenol, and SO MUCH crying.  Yesterday, the fever went away but the crying remained.  Today he is just SO grumpy.  At times, I feel like I might lose my mind and I worry that he isn't sick anymore - maybe this is just his new personality.  Since Monday, he has probably only eaten a handful of puffs, 1/4 of a banana and like 20 blueberries.  The no eating makes me totally insane.  I feel like I don't even deserve the luxury of feeling frazzled either because I am just so grateful he is alive.

I got this text on Sunday from another momma who lost her child.  If I had a nickel for every shmuck who ever told me that god only gives us what we can handle!  

Today, I must channel my inner bad ass once again for day three of this:

The futilty of anger

There comes a time when it is easier to forgive (or just stop caring) than to keep being angry.  What I've learned is that nobody owes me anything.  And, if they don't care about what happened to us, no matter how close they are to us (whether they are immediate family or the people who interacted with Max daily, or distant acquaintances), I can't make them care.  I can be disappointed that my relationships weren't all what I thought they were - but that is about it.  Being angry that people aren't empathetic is futile.  They still don't care.

The truth is that for every light that burned out, one lit up in its place - Friends and acquaintances and strangers who do care - like a black desert sky with a million twinkling stars.  The stars of my current life are made up of other parents who are going through this nightmare, people I never would have expected to hear from, literal strangers who have become my closest confidants, friends who I'd lost touch with ages ago, and best best friends who reminded me why I loved them so much to begin with.

It sometimes becomes habit to call certain people your friends, because you've been doing it for so long.  There are other people who you call friends because you've shared some laughs.  It sometimes takes a gigantic event to reevaluate what friendship really means anyway.  And, not everyone needs to be someone you would want to call a friend.  Some people are just there - in your life by circumstance rather than by choice.  You can keep laughing with them without being friends or expecting anything more than that.  It is easier to accept that than to be angry that they aren't more.  It took a long time for me to get here. 

Impatient

"Do you guys want to have more children?"

I get asked this all of the time.  The answer is yes.  In fact, I really really thought I would be pregnant again by now.

If I wasn't turning 40 in November, I'd probably be planning my next 2 pregnancies.  Planning is the only thing that gives me sanity....but, I've learned planning can be an exercise in futility.  Using my fertility monitor and going to weekly acupuncture appointments hasn't really gotten me anywhere yet.  It isn't devastating - just disappointing.

And here is the other (maybe not so obvious) thing -  I "should" be done.  Before losing Max, we figured we'd probably have two children.  So, I should be done with the having babies part of my life.  I should have two little boys running around my house right now.  That's not how it worked out for us though.  And what is also daunting is that unlike so many other zen mommas I know, I don't really love being pregnant.  I love knowing my baby is in there, feeling the kicks and I love the anticipation of getting to meet him or her, but I am not comfortable as a pregnant woman.  It kills my back, I have trouble sleeping, last time I got a crazy intensely itchy rash all over my body, and since losing Max - pregnancy is horrifically scary.

And yet, I am profoundly disappointed that it isn't happening quicker.  Go ahead and call me impatient - I've certainly been called worse.

Cutting Loose

I don't cut loose too much anymore, but when I do - watch out!  It's possible that I  may have gone a teensy bit overboard yesterday but rest assured that I am paying for it today. Cutting loose isn't all it's cracked up to be.

Boppy

First Candle has partnered with Boppy to educate the public about safe sleep.
Please think about following the safe sleep guidelines with your babies and with the babies of other people.
Do not put a Boppy or any other pillow of any kind in the crib with your baby.  The tag on the Boppy says that it is not to be used for sleep.
You will never regret following these guidelines.

The folks at First Candle are working hard to educate parents and caregivers about safe sleep practices. Please support them by coming or donating to Maxie's Birthday Benefit!

If you are interested in volunteering for Maxie's event, please contact me at teddyabby at gmail dot com.

Thank you!

Register Today!

Maxie's Benefit is one month away (Sunday, October 20th)!  I promise you that you will not regret coming, supporting a very important cause, bringing much joy to our family and others going through the grief of losing their child, and having a good time at the same time.

www.firstcandle.org/maxie - register

Golden Road is such a terrific location.  We love it there!  As I've mentioned, UrbanSitter.com is generously donating sitters to come to our event and supervise fun activities with your children.  There will also be brewery tours, delicious food and lots of beer!  Plan to start drinking early...or just eating really delicious food.

Ted and I especially love silent auctions!  We have had so many wonderful items donated, including:

Wine Packages,
Cuisinart items
Group exercise packages
Magic Castle Tickets
Universal Studios Tours passes
Disney passes
Cancun vacation
Yo Gabba Gabba Live Show & Backstage Passes
Costa Rica private villa
Restaurant gift certificates
Private Pilates Lessons
Xbox Kinect
Spa Gift Certificate
Life Coaching
Landscape Design
Signed Sports Collectors Items
Sewing Lessons
Kids Packages
AND MORE!!!!!!

Register for Maxie's Birthday Benefit today!  www.firstcandle.org/maxie

Thank you to our Silent Auction Donors:

Cuisinart, OliveU, Lambs & Ivy, UrbanSitter, Sew Jessica, Villa Mot Mot, Dezue, Molly Niles, Curveball Health Coaching, PureBarre, Shift by Dana Perri, Yo Gabba Gabba, Magic Castle, Farmer & Ridley LLP, Billy's, Doc McStuffins, Kitchen Karate, Shaquille O'Neil, Mayim Bialik, Aquarium of the Pacific, Granola Babies, Scott Malin, Mozza, Luved Clothing, Suki, Sisters of Los Angeles, Sleepy Planet, What's Meant 2 Be, Dtox Day Spa, 3 finger winery, Papapietro Perry Boutique Winery, Disney, Cancun Premier Vacations, Atlantis Hotel & Casino, Mohawk Bend, Golden Road Brewing, Tony's Darts Away, Steve Rubin, Auntie Esther, Uncle Ritchie, Gigi, Papa Chuck, Uncle Paul & G-Ma Susanna


**If you are interested in making a donation to our silent auction, please contact Abby at teddyabby at gmail dot com.

I don't really want to tell you

Today is one of those days that I wish I'd gone through with my "sporadic" post.  I don't really want to tell you how sick I feel, or how sad I am, or how much taking Jake to radiation every day is killing me (and how lethargic and sick he now seems), or how much I miss my beautiful son Max.  I really don't want to tell you how worried I am that things will never get better...that I will be stuck like this for the rest of my life.  I don't really want to tell you at all.

But I guess I just did.

Managing his situation

**** Warning - if baby poop grosses you out - read no further.****

I think of diapering as an art form of sorts.  Everyone has their own methods.  Some diaper the baby long ways, some side ways, some with cloth diapers, some with disposable.  Some take their time, some quickly "get through it".  Some hold their breath through the whole thing....others hardly notice the stench.

This is the way I do it:  Sideways - head in front of my left hand, feet in front of my right.  I prefer to use Seventh Generation disposable, especially because Mo has sensitive skin.  I do the tush in sections, cleaning off each part of the tushy and then folding the dirty diaper underneath the clean booty parts.  I go down the legs, make sure I get in the cracks and then I take the whole package and seal it up with the side fasteners.  I think my method is fairly standard but it took a little while to perfect.  The challenge factor increases with a wiggly baby or in a less than ideal setting - like the backseat of my car or on my lap (in both cases, I switch to a horizontal placement but the rest of my method stays standard.)

Diapering my babies hardly ever bothers me.  I am not sure why but my babies' poops really don't gross me out all that much.....except for those really horrific blow out ones.  They are a major curveball.  My method gets thrown out the window and I just concentrate on getting through it.

In our home, I change most of the diapers.  Ted was freaked out when he learned we were having a boy (Max).  He worried much too much about pee shooting into his mouth.  While it is true that anytime Maxie's diaper was undone the pee would unleash all over everything - walls, curtains, us....it never, ever landed in Ted's mouth.  Ted used to do Maxie's diaper every morning.  Poop grosses him out but having time with Max each morning was worth it.  Ted is such a good daddy.

When Mo was born, I just took on the diaper changes.  It isn't like I am being nice or that Ted won't change diapers....it is just that I don't really mind and he really doesn't like it so it just seems like a no brainer to me.  There are many things Ted does around our house that I don't like to deal with - like killing mice and gigantic bugs.  He has changed a few of Mo's diapers over the last (almost!) 14 months, but I bet you could count them all on two hands.  Again, if I wanted him to, he would, I just don't really care.  But, OH MAN, did he get served this weekend!!!!  This one diaper change made up for every diaper he didn't change for the whole year. 

I won't give you all of the gory details but the quick version is that we went on a long walk on Yom Kippur - a day that Ted was fasting!  Halfway through our walk, I was struck with the need to go to the bathroom so badly, that I probably would have gone in my pants had we not found a Del Taco restroom.  I ran inside the restaurant, grabbed a token and flew to the side of the building to get into the bathroom.  It was then that Ted looked at me and then down at Mo and said "We will meet you at the market - in the diaper section".  Mo was COVERED with poop - all over his outfit, all over the stroller.  With no water or food in his system (which was probably a blessing if you really think about it), Ted MANAGED that diaper.  I found them in the most disgusting Men's bathroom in the Ralphs near our house - baby poop EVERYWHERE.  "How are you doing this?", I asked.  "I'm just plowing through," he responded with a nasal, plugged nose voice and a determined look.

Never have I been so proud.

Jake's radiation

Jake started his radiation yesterday.  He will have to go in every morning this week.  He gets put under a general anesthesia and then the radiation is given to him.  After he is done, he spends a little bit of time recovering and gets to eat his breakfast before he comes home.

I absolutely LOVE the veterinarian oncologist who is working with Jake.  She is the only one who has really been able to give me any bit of calm about the situation and she loves Jake.  Yesterday, Jake and I were waiting in the reception area and I saw her talking to another family about their dog.  As she walked away, she looked over at Jake and I saw her eyebrows raise, a little confused.  Jake got a pretty major haircut since the last time she saw him.  But, it seemed like she still recognized him and was trying to place him.  I sometimes wonder if even I would be able to pick Jake out of a goldendoodle line-up and I am his mommy.  She then scanned up and saw me and burst out with, "I thought that was Jake!".  Then she came over and gave him some scratches.  I told her I couldn't believe she recognized him and she said, "I've told everyone about Jake!  I love him!"  Is this the perfect person to be working with your dog during radiation treatments or what?  And, not that it matters, but it doesn't hurt - she looks like a Disney princess - probably one of the prettiest people I have ever laid eyes on.  I kind of want to be like her when I grow up - even though she is definitely at least 10 years younger than me.

The hospital is in West LA and about an hour drive from my house in traffic but so worth it.  It is seriously the most pristine and sterile hospital I have ever been in.  I mean I'd give birth there next time if I could (winkie emoticon).  It doesn't smell like dog, or pet, or pee.  It is huge and modern and everyone is so nice (suddenly I feel like I am writing a yelp review...wait, maybe I should).  When Jake was done yesterday, he was in good spirits - wagging his tail and excited to come home.  He was pretty lethargic last night though.  1 day down, 4 to go.  Jake is doing great.

"Other People"

This weekend, Mo and I were at the market and we saw parents pushing a little baby girl in her stroller.  She was all slumped over, barely moving.  I couldn't see her breathing.  She looked dead.  I wondered why her parents didn't seem at all concerned.  I would have been slowing to a stop every few minutes just to make sure her chest was still moving up and down.  I was tempted to check for a pulse myself.  And then I remembered - they assume they are safe....because bad things happen to other people.  People like me.  And then I realized something else - I also assume that bad things won't happen to other people.  I make the false assumption that if something terrible and tragic hasn't happened to other people yet, it probably won't.  They will continue to live their "charmed" life (which, I am sure is FULL of normal people issues with relationships, or lack of relationships, or not enough money, or can't lose the weight, or fighting with their co-worker), because they have been up until this point.

Even after Maxie stopped breathing, the people around us just knew it wouldn't/couldn't happen to them.  In fact, Maxie's death seemed to have been the assurance they needed that their child would be fine.  As one relative told me, since it already happened to Max, statistically, she could be assured that her children were safe - almost like Maxie's death came as a relief to her.  Now she didn't have to worry about SIDS anymore.  Check that off the list.  And, she did - filling her crib with bumpers and blankets and stuffed animals - I mean, why not?  She was pretty much guaranteed that nothing would happen to her baby.  And, she was right.  I've seen that kid in some pretty dicey situations and there has never been anything more than a bump on the head.

My friends drop their kids off at daycare and announce that they feel sad - not because they are worried that their kid may never come home from daycare but because they feel sad leaving them there.  I can relate.  In my wildest dreams, I never thought my son would die at daycare. Then again, I wasn't friends with me....

As a complete surprise, I received some passes to the Disney parks from an old friend's wife over the weekend for Maxie's Benefit.  It was such a awesome donation, especially since I'd been turning over every stone I could think of to get Disney passes for the silent auction.  The passes came with the most beautiful letter.  As I read it, tears were rolling down my cheeks.  "There just aren't words to articulate how wrong the world is that my boy is still here and yours is gone", she said.  You see, her son was born just around the same time as Max.  He is turning three.  I think about him and all of the other kids that are the age Maxie should be all of the time.  I wonder if their parents know what a gift it is that their children are still alive.  I wonder if they realize that, in a way, it is just chance or good luck that mine died and theirs lived.  Or, do they all just assume that mine died because this happens to people like me and not people like them?  Am I so different?  Are we such freaks?  Her letter confirms that she knows we are not.  Those simple but very brave words meant so much to me.  I say brave because most people will not acknowledge the unfairness of it all.

You see, I was not much different from you.  I was a normal mother, who worried about her child, but assumed he would be fine.  I poured my heart into loving him and caring for him and he was taken from me anyway.  I was also sad when I dropped him at daycare every day, but I couldn't be with him all of the time.  Being one of those "other people" that bad things happen to, leads me (and you I assume) to believe that I somehow (and Ted and Max and Mo) deserved this.  Is that what you think?  I mean, that just isn't the truth.  It was complete randomness that caused my child to die and yours to live.  Accidents and illness can happen to anyone.

This world is filled with Chaos - each moment could be your last - could be your loved ones last.  It doesn't matter how good you are, how special your child is, how much you pray, how much you know that nothing bad will ever happen to you.  The few people who have acknowledged that to me, who have recognized that could have just as easily been their child - I don't know - they've touched my heart.  They've somehow normalized us to me - like we aren't freaks, we aren't those "other" people, our son was not doomed from the start.  We just happened to be the unlucky ones this time.  I continue to pray that it won't be anyone else I know or love next time.

Maxie's Birthday Benefit Flyer

Have you seen this beautiful flyer that my Prima (cousin) Sharon made for Maxie's Benefit?  Have you registered yet?  You can register or make a donation by going to: www.firstcandle.org/Maxie.

Indoors for the Afternoon

My work closed early yesterday for Yom Kippur, and while other Jewish employees most likely ran home so that they could eat their last meal before fasting today and get ready for services last night, I did not.  Not attending synagogue may not be helping my chances of being written in the "Book of Life" this year, but the way I look at it, there is nothing that probably will.  If god saw fit to take Max, nobody is safe.  So, I am rolling the dice.  I'm wild like that.

Instead, I took Mo to a local indoor playground because there is only so much crawling he can do in our little house and even I would like to get out of here once in a while.  

He had such a ball!  He was moving at such high speeds the whole time, I couldn't get many photos that weren't a complete blur.  He was into everything and even playing with other kids.  It was so cute.  There were two little "mean" kids that kept telling him to go away.  Their mom tried to set them straight once but then she too started giving me dirty looks when Mo kept crawling over to them.  Mo's like his daddy - he likes when people play "hard to get".

Since she is blurry anyway, I don't mind telling you that this is the mean girl.

She is moving that yellow toy away from Mo so he can't play with it.

I love doing these kinds of things with Mo - all of the things I never got to do with his big brother.  I want his life to be full of fun.  I love watching him interact and explore.  I love being with him and spending time just seeing his funny personality.  He is such a character.  

He picked up this little pink tea kettle as soon as we got there and never put it down.

Faith

Considering tonight is Erev Yom Kippur (or, the first night of Yom Kippur), the holiest of all Jewish Holidays....

And considering that much my life has been centered on Judaism - my summer camp, my career, one of my Masters Degrees, my favorite holidays, so many of my social connections....

And considering that marrying a Jewish man and raising a Jewish family was very important to me....

Considering ALL of this, I find it ironic (or - I don't even know if that is the word) that I feel like I have no spiritual base on which to lean during this incredibly challenging period of my life.  I love Judaism.  Honestly, I do.  Judaism to me is all heart - community, caring for those less fortunate, tradition, celebration, holidays, Israel.  There is also a model of rising up from the ashes that has served me throughout this journey through grief.  But, Judaism hasn't really helped me to understand where Maxie is....how a loving god could have done this to him (and us)......what happens after we die......what is the meaning of this life?

On this Yom Kippur eve, I am still looking for answers - as I assume I will be for a long time - unless I can finally just live with the idea that I may never have them.  I suppose that is what faith is - living with the knowledge that you will never have the answers.  The faithful call it "trusting".  That is what I am aiming for.

Poor Baby

When Maxie used to wake up in the morning (6 am on the dot), he would sit in his crib and talk to himself. "Da da da da da?", he'd say - and his voice would go up on the last "da". We'd go through our morning routine with him - diaper change, bottle, baby CD (music we can't listen to anyone). He would wake up from naps in pretty much the same way - happy.

Mo wakes up unhappy. He is a very happy boy during most of his waking hours, but he wakes up bawling. Some mornings are worse than others - and very rarely - he wakes up without tears (although he did this morning). I can't say I blame him. I am NOT a morning person either. But, I can't figure out what makes him cry like he does. Yesterday morning, he was so upset, he was screaming. It took lots of hugs and cuddles to calm him down. 

He also has nightmares. I'm not even sure how it's possible since he has no memories to conjure up the fear. The scariest thing that had ever happened to him was once getting stuck under the couch during an overly ambitious crawl session. He was rescued immediately. 

And it would just kill me too - if he wasn't such a cute cryer. I know I am crazy but I think babies are so cute when they cry.  The way his face squinshes up and the big fat tears roll down his cheeks- it's too much. I want to kiss up all of the tears and eat those cheeks for breakfast.

Speaking of which, here is a photo of Mo crying over breakfast:

Isn't he cute?

Hairdo!!

Someone got another haircut!!!

His THIRD so far!!

The Ripple Effect

Ted and I were invited to a Rosh Hashana party last week at the home of some new friends (who we love, by the way).  We didn't know anyone else going so I worried just a little bit about making small talk with new people.  Especially new people with children.  I know from experience how much people with children like to ask questions and make conversation about children with other people who have children.  The topic of children is an "easy" way to make small talk with strangers.

With new people, I think it's important to keep it light.  But, there is nothing light about our experience.  I can't make it light, no matter how big the smile is on my face.  The second I mention Max, I think the hole in my heart probably becomes visible from space.

We were doing pretty good overall.  Not having to socialize much because Mo is in that stage where he crawls so much that you have to keep on top of him all of the time.  My advice - if you can, bring a baby to a party where you don't know anyone.  You won't be expected to mix in at all.  You can just trail around behind your kid, keeping your head down, making sure they don't get into trouble.  (Terrible advice, I recognize, to parents who have just lost their only child to SIDS or anything else.  If I had been reading this blog in the year between losing Max and Mo's birth, this is where I'd stop reading)

Eventually though, we did start talking to folks.  We did what we usually do and ask a thousand questions of whomever we are talking to so that there isn't a chance for them to ask us the dreaded questions.  People like people who ask a million questions.  People don't like people who kill their buzz at a party by talking about their child who stopped breathing at daycare.

I actually thought we were going to get off scott free but, of course, we didn't.  Our conversation partner gestured over to a big group of kids playing and asked, "So, how many of these little guys do you have running around?"  The silence was overwhelming.  Neither Ted nor I answered.  In the space of about 30 seconds, a complete conversation happened in my head:

"Just tell him you have one on earth and one in heaven"
"Heaven?  Do I even believe in heaven?  AND "heaven" kind of wraps up the messy, painful package a little too neatly"
"No, just don't tell him.  He doesn't have children.  He wouldn't understand"
"How can I tell him I have one child when I have TWO!?"
"He doesn't need to understand.  Just tell him and change the subject."
"Well then why even bother telling him?"

By this point, the guy was looking at us like we were nuts.  Like, "Don't these people know how many children they have?"

"One", I said, and then instantly felt sick.  But, we DO only have one "running around".  Horrifyingly, my answer was accurate.  Ted and I just looked at each other with one of those looks that conveys our understanding of exactly what is happening in the other person's brain.  We haven't spoken about it since.  It's probably going to happen at least 50 million more times in our lives, so why bother discussing it every single time?

I think the bigger point here, for me at least, is the ripple effect that losing Max has had on every single part of our lives.  The Tsunami was his passing and the way that it happened so suddenly and shockingly in the midst of our lives having become completely centered around his existence.  Then huge waves that immediately started flowing from that impact (and continue to come at us) I've discussed ad naseum - they continue to knock me off my feet daily - grief, survivors guilt, meaninglessness, emptiness, abandonment.  I am always looking for the the BIG waves - worried about their impact. So worried, in fact, that I forget to look for the little ones.  But, the little waves throw me off balance hourly - the questions people ask, the silly things people post on their Facebook pages (I made the mistake of looking last week and I could literally go on and on about this one), the milestones that children "his age" are reaching without him, the words that come out of my own mouth when I least expect it.

There seems to be no end.  THIS is the new normal.  The new normal is making sure to always be on guard, to have your speech prepared, to know how you are going to handle a variety of situations that you used to be able to take for granted, to "put your best foot forward" even though it is mangled and non-functional.  It's anything but normal - this new normal of ours - still feeling all of the ripples, even on our "easiest" days.

Sneaky

Mo and Jake are definitely in cahoots!

A few words about Jake

I probably wasn't clear enough, but I also didn't have all of the answers until the middle of this past week.

Yes, Jake has cancer but he is not in pain.  WE know he has cancer, but HE doesn't.

In fact, he probably hasn't been feeling this good in a while. The acupuncture has really helped his hips, which is what had been making him feel lousy for a while.  If we hadn't seen the tumor in his mouth, there would be no indicator that anything was wrong.  He has a slow growing tumor and in most cases, with this kind of tumor, they could operate and get rid of the cancer.  In Jake's case, it would mean removing most of his muzzle, including his nose, and that just isn't an option.

Most important to us is Jake's quality of life.  The "good" news is that he is a good candidate for radiation therapy and with a week of radiation, we can halt the growth of his tumor for a while.  After that, we will just have to see how comfortable he continues to be.  We will continue to watch him.  Right now and for a while, he will probably continue to feel good, which we can see by the way he plays, wags his tail and eats (Jakey eats A LOT - in fact RIGHT NOW he is eating cheesy eggs that Mo is casually throwing on the floor for him).

Letting him go before he was ready would be inhumane (and completely unnecessary).  Jakey has some time left.  He isn't ready to say goodbye just yet, which is good, because neither are we.

Buy your tickets!

You can now purchase tickets and sponsorships for Maxie's Birthday Benefit online!

We are so moved by and grateful for all of the generous sponsorships and awesome auction items that have been donated by amazing friends and friends of friends to our event!

Without our sponsors, we really wouldn't be able to pull this thing off!  This means the world to us.

www.firstcandle.org/maxie

Thank you so much!

Silver Sponsors:

Keller Williams Hollywood Hills
Pacific Western Bank

Bronze Sponsors:
UrbanSitter.com
Marie Mansour - Central Orthodontics & 
Natalie Mansour DMD Pediatric Dentistry

Sapphire Sponsor:
A2E

Friends of Maxie:
Dezue - a landscape architecture firm
The Law Offices of Zomber & Panagiotis
Fleishman Law Firm
Susan Chadney, Realtor
Howard & Marsha Spike

Ever After

Four years ago, we started a new life together, thinking we'd signed up for "Happily ever after".  In those four years, we have seen the very best days of our lives and the very worst.

Through the deepest and darkest hell, you were by my side.

I miss you when you are away from me.  I am comforted knowing that you are walking this road with me.  I am looking forward to our future together....praying for more happiness to come our way.

I don't know where I'd be without you.  I love you!

Necessary

I feel obligated to mention that it is Rosh Hashana - the Jewish New Year.  We aren't going to synagogue.  I'm not sure either of us can muster the strength to go and sit there for hours, listening to the sermons and watching the happy families.  Maybe next year we will feel differently.  This year it never even came up as an option.

It is said that the period between Rosh Hashana and Yom Kippur is when god decides who will live and who will die.  I am pretty sure that Max wasn't even born yet by Rosh Hashana of 2010, so the decision must have been made while he was still in utero.  I wonder what exactly it was that he did that pushed god over the edge.

A colleague of mine wrote an email, meant to be energizing to our staff, saying that he once heard a rabbi say that the best way to assure being written into the book of life is to be necessary.  His point was that we should all keep doing good work so that god will see how important we are to the world and will ensure that we live through another year. What wasn't intended was the flip side of that statement, that those who we've lost had somehow become unnecessary.  Max was and is necessary to our family.  We hardly make sense as individuals and as a unit without him.  I hate to be so blasphemous but I am pretty sure god got it wrong.  He must have confused Max with someone less necessary.

If Max wasn't necessary - to me at least - I really fail to see who is.  If you could see the excitement in Mo's eyes when he sees other children, you'd know just how necessary his big brother really would have been to him.  If you could see the tears in Teddy's eyes, you'd know just how necessary Max was.  If you could see the hole in my heart.....the pain in his grandparents smiles.....you'd know.

On this Rosh Hashana, I wish for YOU to be written into the book of life - if that is what you want - with all of those people (and pets) whom you love the most.  Every life is necessary - no matter how young or old.

Shana Tova (Happy New Year)

This one day

I woke up this morning with a heavy feeling of sorrow - there are times when the burden of losing Max feels so unbearable I can hardly stand being in my own skin.  Then I thought about Jake.  I am taking him to the oncologist this morning.  It all feels like too much.  I can't breathe.

But, then I remembered that I just have to make it through this one day.  That is all.  Just this one day.  I'll deal with tomorrow tomorrow.  I can't even think about it now, let alone think about living the rest of my life without Max.  It's way too heavy of a burden to carry.

I snuggled up to Mo and gave him at least 1,000 kisses and then just tried to breathe.  I can get through this one day.

Sailing

Last weekend, Ted's cousins, Miriam and Jay, took us out on their sailboat.  Mo and I actually spent a lot of time below deck.  He likes to move, move, move - sitting still is not his thing these days.  We had a great time!!!!

Miriam and Jay have been so good to us and have served as important role models as well.  They lost their beautiful daughter, Liora, 17 years ago in a tragic accident.  They are the most lovely people and have honored Liora's memory with a forest in Israel as well.  If she had lived, I am sure we would have known each other - she was on such a similar path as me.  She worked in the Jewish community and had just returned from leading a mission to Israel when the accident happened.  She would only be a few years older than me - we may have even been friends.

Being with other people who are on this path with us is important to me - it has helped light the way.  I HATE my club, but I love the people in it.

What must he think?

I don't really worry much anymore about what other people think.  I don't care if they think I am grieving too much or not enough or that I am too angry or too sad.  Sometimes I worry what Max might think.  People have been telling me since we lost him, that he would want me to be happy.  Would he?  Would he really want his mother to be happy in spite of his death?  I think it is one of those things people say.  I say it too and, most of the time, I believe it.

A widower that we know lost his wife less than a year ago.  It was DEVASTATING.  He looked like he'd been hit by a truck....and somehow I had this feeling that he would probably get remarried before too long.  He was too in love with that wife to know how to go about life as a single person.  He hasn't remarried yet, but he does have a girlfriend...and I think it is a really good thing.  I don't think it erases her memory or his heartbreak - it just creates a space for him to love again.  I like to think that if Ted lost me, that I would be happy to see him fall in love again.  I don't want him to be alone.  I worry that what I'd actually feel is jealous.  

If my parents lost me - how would I want them to feel?  When I felt that they were particularly horrible to me (I mostly felt that way when I was a teenager - like when they wouldn't let me do something I wanted to do), I'd picture them at my funeral - crying over me and wishing they'd just have let me go to the party I wanted to go to.  It's really morbid, I know, but I think many of us have had these fantasies.  Of course I'd want them to be happy again but how would I feel about really seeing them woop it up?  I can't really say, even though I'd like to say that I'd be smiling down on them.  I don't want my parents to know sadness, but I'd expect them to mourn for a while.  Or maybe my dead self is more evolved than that - I sure hope so.  

All this to say, when I laugh to loud, I wonder what Maxie must think.  I hope he knows that I am laughing despite feeling sick to my stomach that I am forever without him.  He must - because the laughter is just a band aid.  I hope he knows that.

Safe Sleep

A pregnant girlfriend of mine told me that her one huge worry about the new baby is safe sleep...and she wants to talk to me about all of the safe sleep recommendations.  Who can blame her really, with me as one of her best friends?  But, I can't talk about it.  I can write about it here, but I really can't talk about it.  The topic of "safe sleep" is a HUGE trigger for me.  I can't sit and have a calm conversation with anyone about the recommendations for safe sleep, which, by the way, I followed.  The whole topic throws me into a panic.  And, by the way, so does hearing or seeing that someone I know isn't following the recommendations.  I'm not even judging them, I just get completely freaked out and panicked.  It is a physical response - has nearly nothing to do with logic....even though logically I believe the recommendations are recommended for a reason.  And yet, I know what you are thinking "Why does she call BS on the recommendations about breastfeeding?   What can I say?  We are ALL full of various hypocrisies. I'm no different.

The safe sleeping recommendations are all over the internet.  Organizations like First Candle, promote safe sleeping awareness through their website, dissemination of information, press releases, advocacy campaigns and videos.  Usually mothers get a pamphlet with the safe sleeping recommendation from the hospital after they deliver.  They are probably posted on the wall in your pediatricians offices.  I followed them.  I could not justify not following them.  

I know not everyone does.  I know moms put their babies on their tummies because babies sleep better in that position.  I know parents put blankets in the crib because maybe they just hadn't heard that the blankets can cause suffocation, and I know that many people co-sleep because the advice on this one is confusing - some say co-sleeping can cause SIDS, others say it prevents SIDS.  What you do in your home is up to you but I can't really talk about it.  

What I will say is this - I strongly believe that caretakers of other people's babies should follow these recommendations as if they are laws.  It is not up to anyone but a parent to decide to put a baby down on their tummy, or to swaddle a baby past four months, or put blankets or pillows in the crib with a baby that does not belong to them.  There is just no justification for a daycare, or nanny or any other caretaker to not follow these recommendations.  NONE.  And, that is all I will say about that also.  There are certain things I just cannot talk about - they are way too painful and scary for me.  I am sorry.