Gloomy

I am thrilled at the prospect of the weather getting gloomier - something about the outside matching my insides feels balancing.  I was sort of hoping today would be that day - it was looking kind of grey out there and it did rain yesterday.  But, I can see the sunshine poking through my window shade and I know it's going to be "another beautiful day" in Los Angeles.

What's funny is that the lovely weather used to be the main reason that I loved it here so much.  I can remember standing at my bus stop in San Francisco in June of 2006, wearing a winter coat and shielding myself with my umbrella from the downpour.  I knew then that I couldn't stay there, no matter how much I loved it.  I had to get back to Southern California.  Winter weather used to give me the blues.  The BIG TIME blues.

During the first year after Maxie stopped breathing, I rarely left my house and all of those sunny LA days were completely wasted on me.  I hated knowing people were happy outside.  I kept the shades closed all of the time.  The sun seemed my enemy.  My favorite season, summer, was ruined for life - because it took my baby. 

On really rainy days, I loved hearing the thunder and lightning - the sounds of chaos - replicating the feel of my heart.  It felt like the perfect excuse to pull the covers over my head and keep on sleeping - which I was going to do anyway.  It's ok to be angry and sad and sleepy when the sun isn't shining.  Sometimes I just wish it would go away - which is probably why places like Portland and Seattle sound so much more inviting to me now than they ever did before.

Mo brought the sunshine back into my heart.  He made summer better too by being born in the same calendar week that Maxie stopped breathing.  Heck, he even saved July - a month I was planning on scrapping for life.  I love taking him to the park or just outside on our lawn to play when the sun is out.  I do.  But I am just not that sunny girl anymore.  It's in me, but it isn't my prevailing inner season.  My brooding heart still longs for the gloom.

Sun sun go away!  Please come back another day!

A very strange playground




Maxie's Birthday

We were all feeling lousy yesterday. Last week Mo was sick and must have passed it on to me and then I passed it on to Ted and possibly back to Mo. I was sick from Saturday night - this morning. Ted got sick Sunday night, and Mo just puked a little yesterday. Ugh. Overwhelming grief and a stomach bug are a terrible combination.

Thank you for the emails, and texts and sweet comments and Facebook "likes".  Even though I still feel like "liking" isn't quite the right sentiment for the occasion, I know that FB doesn't give you much of an option if you don't feel like writing something.  All that to say, I do appreciate the intention.

I'm feeling really sad.  Really, really sad.  And, to be honest, I don't even really feel like sharing.  I feel all shared out.


Happy Third Birthday

I wish more than anything that I had a three year old today.  I wish more than anything that that three year old was you.  Every day that I am without you, I miss you more and more.  The day you came in to my life, you lit it up brighter than I had ever seen.  I never knew that I could be so happy and love another person that much.  The day you left my life, my life as I knew it ended.  I spend hours every day thinking about how we will be together again one day and giving myself pep talks to get through all that lies ahead without you.  I hope you know how much we love you.  I hope you know that we are never ever not thinking about you.  We carry your heart in our hearts.....forever. 

Happy Birthday Little Monkey.  I love you to the moon and beyond and back a thousand times.

Daredevil



The hardest job

People always say that parenting is the hardest job they've ever done.

I agree it ain't easy.  You are responsible for the life of another human being.  The little ones can't communicate exactly what they want, which can be frustrating.  Sometimes they get sick, and that can be really scary.  Your own needs get swept aside sometimes (like sleep), which can be, um, tiring.  But, overall - being a parent isn't the hardest job I've ever done.  It just isn't.  Sorry folks.

The hardest job I've had was my last one - as a regional director of a non-profit.  Managing a board of individuals - all of whom were major donors to the organization, all with huge personalities and varying visions of our goals - keeping them happy and trying to stay on their good side every day.  I loved the job - but, I was up all night thinking about every word I had written and every conversation I'd had.  The reward in that job was in making those people happy and knowing that the big picture was the work we were doing as an organization.  Oh ya - and getting paid for it.

Losing Max has been BY FAR the hardest thing I have ever gone through - BY FAR.  But, the job of taking care of him.....and I feel like a traitor to parents around the world by saying this.....it just wasn't THAT hard.  Neither is taking care of Mo.  I mean, YES, there are days where I cannot wait for baby bed time so that I can spend a few minutes reading or writing a message to a friend.  But, the actual parenting part - I don't know - it IS hard - just not the hardest thing I've ever done.  I've never had more than one child at a time - so I think that will change things DRAMATICALLY if we are ever so lucky as to have another child (or two).  I know I will look back on this post and laugh out loud at myself.  I also work full time from home and have part time help.  Again, it IS hard. I know this.  It just isn't the hardest.

And, the difference between the job of parenting and any other job is the reward - you put in ALL of this effort - endless sleepless nights, nursing and pumping (and pumping, and pumping, and pumping), and teaching new behaviors, and putting up with temper tantrums......and the whole time, you are with the most important person you've ever known in your life.  You are "working" with the people you love most on the earth - even if they are sometimes entitled complainers.

Believe me, I've worked with many entitled complainers (see description of my last job)- but I never wanted to smother any of them in kisses or squeeze their thighs until they giggled their faces off.  If they told me "good job", I considered it a GREAT success to feel proud of.  I consider it a much GREATER success, and I feel MUCH prouder when Mo actually eats the meatball that I put in front of him at dinner time.

I promise to revisit this post when I have more children, because I know those of you with more than one are saying "She doesn't know sh#t!".  But, see - I do!  I do know sh#t.  Because the HARDEST part of being a parent is knowing that you could lose your child - and that is something I've already done.  Everything else is a challenge, for sure, but there is nothing else I'd rather be doing in the world and I would pretty much give up anything I have in this world to be able to be parenting both of my children right now - even if it was actually the very hardest job in the world.



A thicker skin

You may have noticed that I signed back into Facebook yesterday.  I figured it was probably the best way to spread the word about Maxie's Benefit.  I think I was right.  I got a couple of new registrations and a new silent auction donation from the jeweler that did Ted's wedding band.  So, I am very glad that I signed on.  And, though I am not Facebook's biggest fan - I did not find myself losing my mind simply looking through the feed like I used to.  I even "friended" a few bereaved parents and others that I have met since the time I last used my account.

I was telling another more newly bereaved parent the other day that I think that what has really changed most for me over these last two + years is that I've developed a thicker skin.  I was so effing mad for so long - and here is the real truth - I was mad at everyone I knew whose lives just kept on exactly as they had been before Max died.  EVERYONE.  Even if you think I wasn't mad at you, you should know - I was.  There, I said it!  I hated seeing their carefree updates about what they ate for brunch, and the funny thing their kid said, and what concert they were seeing at the Bowl.  I know it isn't logical - but emotions aren't always logical.  I felt like I would be destroyed if a friend lost a child.  I have felt destroyed by the death or victimization of many people throughout my life whom I haven't even known.  So, I figure that a friend losing a child would probably wipe me out.  And, maybe that is easy to for me to say.  I'll never know how I would feel about a friend's child dying outside of the context of having Maxie die first - because I am first person in the circle of people I know to have lost a child.  But, I was mad that they weren't destroyed.  I am not anymore.  I get it that just because my life ended that day doesn't mean that the same is true for everyone or really anyone else.

Anger was the prevailing emotion that I felt, mostly outweighing heartbreak, for MONTHS.  I was so ANGRY that god took Max, so angry that nobody involved with any part of it even questioned whether they should take more responsibility for their actions, so angry that it was MY Max and not some other kid, so angry that I would never see him again in my life, so angry that my life as I knew it had ended - that I was no longer a mother, that I could no longer live naively thinking that I had a blessed life, that I wouldn't really be able to continue doing my job, and that given what we'd been through, I would probably never feel safe again.

I still feel anger - from time to time.  My feelings still get hurt, but not that often.  My skin is still pretty thin....but it is so much thicker than it was.  When people used to say thoughtless or insensitive things to me, I would brood about them for DAYS.  Now, I mostly think, "How thoughtless!" and then I move on.  I don't usually waste anymore energy on it (of course there are always exceptions for the REALLY thoughtless insensitive comments - they can bring me right back into that angry hell I lived in).

In early grief, there is no barrier between you and the mean world.  All of your defenses are stripped away and you are left completely exposed and unable to manage any of it.  Time doesn't heal all wounds.  I am still JUST AS devastated today as I was on July 19, 2011 that Maxie is gone - in some ways, even more...but I have developed some coping skills...and if you've recently (or not so recently) lost someone you love also, I know you will too.

The library today

There is a library near our house that I worked from a lot during my darkest year.  I used it as an excuse to get out of my house.  I knew that, though I was pregnant, nobody would start conversations with me about the baby and whether it was my first - because libraries are quiet.  I would take breaks from my work to skim magazines, read books on grief and scan the paranormal aisle for information on how I might be able to connect to Maxie.  It was a safe place for me for the most part.  I just had to be careful of two things - never to get a seat facing the playground outside the building and never to go there on Tuesday mornings at 11 am, when there was a toddler storybook time.

After Mo was born, I didn't go there for a long time.  It reminded me of my desperation to escape from hell.  Anyway, I didn't need a location escape anymore as much.  Mo became my escape - freeing me bit by bit from loneliness of the nightmare of losing my only child.

Recently, we signed Mo up for the toddler storybook time at the library.  He loves it.  Most weeks, his nanny takes him, since I am at home working.  A couple of weeks ago though, she took Jakey to radiation for me so that I could take Mo to the storybook time. It's honestly hard to say who enjoyed it more.  I felt triumphant sitting in that room with 20 toddlers and their parents and caretakers, acting like I was one of the bunch, like I belonged.  I am not like them - but they don't need to know that.  I loved watching Mo crawling over to all of the kids surrounding us.  I loved watching him play in the bubbles that the librarian turns on after the book is read, the songs are sung and the little movie is watched.  I loved sitting with him at one of the small tables and doing an art project "with" him.  It is the nicest children's library I've nearly ever seen - and so well used.

We've even started playing on the playground.  I couldn't even look at it before.  Now, we sit in the sand and climb up the ladders and slide down the slides and eat goldfish and laugh and hug.  It's like a dream come true - honestly.  Some people (including me) dream of winning the lottery - I dream of hanging out with my living child in a space that is crawling with other children.

I love pretending I am a regular mom.  Honestly.



In the library




On the playground

PS - I am in FULL Chill Music Mode over here!  Please sign up to come to Maxie's Benefit!  DVR your football game, come after you go to that birthday party, get your manicure later in the afternoon, go to the Saturday Farmers Market instead (there is one near our house at the Autry Museum - we will see you there), rearrange your kid's nap schedule for the day - just register and come!  You are killing me! (Well, not those of you who have registered :)  )

Maxie's Benefit - So soon!

As I mentioned yesterday, I was at Golden Road Brewing on Monday to go over the logistics of Maxie's Birthday Benefit with their lovely and helpful staff.  I have to say that seeing the space again - it was SO much better than I even remembered it in my head.

After seeing their private event space, Chloe's, you will all leave thinking about what kind of event you can book there.  It is so RAD!  Plus, we have the whole side lawn (which is huge) to ourselves from 10:30 - 12 before the general public joins us there (because your kids will NOT want to leave this place).  There is a life-size Connect 4 and a life-size Jenga, a Foosball table, air hockey and much more - plus we will have some of our own stuff going on as well - face painting and crafts supervised by the sitters being donated to our event by
urbansitter.com.  There will be two brewery tours that you can sign up to go on: each one lasts about an hour, kids are welcome. Everyone who plans on participating in the brewery tour must wear flat, closed toed shoes.

Inside of Chloe's there will be lots of delicious food (this is not regular pub food - I swear - everything is delicious - with lots of vegan and vegetarian options as well), beer that is brewed RIGHT THERE, and of course, non-alcoholic beverages as well for adults and kids.  Golden Road is giving us everything at close to their cost and then our sponsors have helped to bring the price down even further.  You will enjoy the day and I promise you will feel good about supporting the cause - protecting babies!  
www.firstcandle.org/maxie

A lot of my friends have been working really hard on our silent auction.  I am so impressed with all of the wonderful items that they have secured for us!  There will be a lot of great stuff, including, but not AT ALL limited to:


SO MANY items from Cuisinart - coffee maker, hand blender, kettle, snow cone machines....ETCETERA!  
Belly Dancing Classes
Jedi Training and Fencing Classes
Signature Massage at DTox Day Spa
Pure Barre 10 class series (in Brentwood and Woodland Hills)
Magic Castle Entrances
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
Nutrition/Life Coaching
Landscape Design
Signed Sports Collectors Items 
Sewing Lessons 
and Kids Packages


Listen, I know you aren't coming for the auction and face painting.  I know you would be coming to support us.  And, I know it is a little scary to see us - because we lost Max and you know that this event will be "bittersweet" for us.  But, I promise that it will be a fun day, that there will be light throughout the afternoon that shines down on all of us, and that you will feel good about being there and helping us to honor Maxie's memory.  It's ok for you to bring your children - in fact - our whole event has been designed so that those of you with children will have as much fun as those of you without.  We want to see your kids.  I promise.  

Please, please come.....and please register ahead of time.  I do need to give the venue a head count so day-of registration is discouraged (it's possible, but not preferable :))   www.firstcandle.org/maxie

Sunday, October 20th - 10:30 am  - 2 pm!

Golden Road Brewing
5410 W San Fernando Rd, Los Angeles, CA 90039

Thank you AGAIN to our generous sponsors for making this all possible:

Golden Road Brewing and Chloe's

Silver Sponsors - Pacific Western Bank and Keller Williams Hollywood Hills

Bronze Sponsors - Natalie Mansour DMD Pediatric Dentistry & Central Orthodontics; Urbansitter.com

Sapphire Sponsor - A2E

Friends of Maxie - Dezue Design; Fleishman Law Firm; The Law Offices of Zomber & Panagiotis; Susan Chadney, Realtor; Howard & Marsha Spike

And our Silent Auction Donors: 

Lambs & Ivy, UrbanSitter, OliveU, Sew Jessica, Villa Mot Mot, Dezue, Molly Niles, Curveball Health Coaching, PureBarre, Dance Garden, 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 & Amy Malin, Josh & Ali Laurano, Tom Freund, renee & jeremy, Luved Clothing, Suki, Sisters of Los Angeles, Sleepy Planet, What's Meant 2 Be, Dtox Day Spa, 3 finger winery, Bluebeam- Revu, Swordplay LA, Papapietro Perry Boutique Winery, Sunland Vintage Winery, Disney, Cancun Premier Vacations, Atlantis Hotel & Casino, Mohawk Bend, Golden Road Brewing, Tony's Darts Away, Derek Brown, Auntie Esther, Uncle Ritchie, Gigi, Papa Chuck, Uncle Paul & G-Ma Susanna

And our WONDERFUL friends who have helped by donating time, securing sponsorships, volunteering at the event and supporting us themselves........ we could NEVER do any of this (including laughing and living) without you all!
Ann Frederick, Matt Panagiotis, Sharon Halkin, Kate Spitser, Sammy Castro, Carly Vazana, Ashley Wyatt, Jared & Courtney Wolff, Rachael Petru Horowitz, Kim Birbrower, Stacy Walter, Josh & Ali Laurano, Erika Montes, Nancy Meyer, Eowyn Greeno, Stefanie Elkins, Amy Robinson, David Fischer, Bonnie Mclean, Erin White, Molly Niles, Jessica Dooley, Tamar Tamler, Leslie Bell Levy, Sigalle Feig, Greg Heller, Jenna Rosenberg, Rose Gabaeff McAllister, Auntie Esther, Uncle Ritchie, Gigi, Papa Chuck, Cousin Laurie, Cousin Jennifer, Cousin Linda Green, Uncle Paul, Lyndsey Thomson, Auntie Beth, G-Ma Susanna........if I have forgotten you, it isn't because I don't appreciate you!  

Letting Go

I thought if I kept myself REALLY busy, I would be ok.

I am planning Maxie's Birthday Benefit, a baby shower for one of my best friends, a weekend camping trip, and a vacation to Costa Rica for my 40th birthday.  I am also working full time and spending lots and lots of time with my Mosie.

And yet, despite ALL of this distraction..... despite all of these good things to look forward to.......I am crumbling.  CRUMBLING.  For the last two days, every time I have been alone, I break down.  Yesterday morning, I couldn't even look our nanny in the face when she walked in the door because my eyes were so full of tears.  I went to Golden Road Brewing yesterday to go over the logistics of Maxie's Benefit with their staff and then got in my car to leave after the meeting and promptly broke down and bawled.  Ted and I got in a mini argument last night about Jake's new diet and all of the medicine he has to take and after we made up, I just cried myself to sleep.  I can't even believe sometimes that we ever still argue over stupid stuff when our lives have been hit by a tsunami the size of a mountain.

The fact is - I am just aching all over.  I am sick to my stomach.  I cannot explain how much I wish I had a three year old little boy to love today.  No words will do justice to how deep my longing for Max is.

I am finally at the point where I can hang out with kids who are the age that Max should be.  And, what kills me is how wonderful they are.  Three year olds are amazing.  They are cute like babies, but they have strong opinions, they say the funniest things, they are such good snugglers.  I know my Max would be wonderful.  There is no doubt in my mind.  If I love other people's three year olds so much, I know that I would be absolutely out of mind WILD about Max.  I am wild about him now, and he isn't even here.

And, sometimes when I am reveling in the love I have for Mo - which is etheric and unearthly and all-consuming and I feel it in my bones - I remember that I loved his brother this deeply as well.  And, I still do but I don't get to LOVE him like I love Mo - with hugs, and kisses, and trips to the park, and watching our favorite shows, and cuddles, and .....PHYSICALLY.  I don't get to know how he is, or help him make friends, or tell him how wonderful he is.  And, it just makes me sick, sick, sick.

And, I guess no matter how many distractions I have - I will never be able to let go of the immediacy of this loss.  I will never, ever let go of Maxie.

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.