Mo is tall

I've been away for a little bit.  It felt good to take a break.  I might even have to keep it up.  I did want to update my Mo memories though.  He is growing up so quick.  In fact, he seems to be growing quicker than most!!!  He is a TALL boy!

Wherever we go, people think Mo is older than he is.  This morning, at the bank, a teller asked me if Mo was three or four.  "He isn't even two", I responded.  He told me that his son is four and is the same size.  He is as tall as many of his three year old friends, for sure, and taller than most of his two year old ones.

I mentioned a few weeks back that Mo isn't talking yet.  He isn't even saying one word (well, that isn't entirely true - he says "no!".  Not in a T squared way.  Kind of in a nonchalant way like, "Nah - not right now".  He also sometimes uses it to mean "yes"....so - hmmmmm - I can still consider it one of his words, right?).  Anyway, my point is that this can be confusing to older kids and even adults.  They see a boy who looks like he is three but he doesn't talk yet.  It sort of gives me an insight into how people treat children who actually ARE three and don't talk yet.  It isn't always nice.

Months ago, we were at a party and Mo wasn't walking yet and so he crawled around the party.  Another mother pointed at him and started laughing and then asked me, "Is he trying to be funny?"  "No," I said "he is trying to get from point A to point B".  She just kept laughing.  Very odd behavior indeed - dontcha think?

I am not particularly sensitive to the fact that Mo is a little behind.  He is being evaluated for speech therapy and if he needs it (which it looks like he does), I am excited to get him started.  I think it will help him express himself better and lower his levels of frustration.  And, I don't get hurt feelings when people think he is older than he is.  What I do think is kind of weird though is confronting the parents of a child of any age that seems like they might fall out of what might be considered the "normal" range of development.  I would think that by now we might all understand that children develop at different rates and that some children will always have issues that they and their families will struggle with in regard to their development.  I'm just thinking that people could be a lot more sensitive with the parents of those children.

In the meantime, something else that I can't help but think about is that Maxie would be three and might be about the same size as Mo.  Maxie was a little small and Mo is a little big.  They'd probably meet somewhere in the middle.  When I look at Mo, I see what Maxie could be - physically.  And, Lord knows, they do look alike - a lot alike.  They might be sharing clothes, along with toys and a bedroom by now.  They'd definitely be playing together and perhaps Mo would be talking more if he had a big brother to mimic.  Who really knows?  It's all just daydreaming to me.  I wish I could see these boys together.  What a beautiful site that would be.

In the meantime, this is Mo playing with Everett.  Everett was supposed to be Maxie's friend (he is my friend Jessica's son).  He was born only a few weeks after Max.

Life's important lessons

For a long time, I thought that if I wrote honestly about how dark our world was, if I expressed just how devastated we are, as clearly as possible - that I could finally stop defending our grief and that perhaps people would be more patient and loving with us. I wrote and wrote and wrote and tried so hard to explain the bitter awful hell of life without our son.

I know that it has been cathartic for me. Even though the REALLY honest stuff has been written in my personal diary and not here, I still felt more "heard" than if I'd never written at all. I kept hoping that there would be an epiphany, that the people in my life who seemed to have difficulty with empathy would miraculously understand that I was clinging to life and barely getting by. If they knew how difficult every hour of every day was, they would approach us with compassion and seriousness instead of silliness, disdain or apathy.

As time has gone on, I've come to realize this can never be true.  Everyone is basically exactly who they started as - exactly who they are. My words have had very little impact. I continue to fight for my right to be aggrieved with all of the same people, just as I continue to be comforted by all of the same people.  The only person who has actually changed in this process is me.  In a million ways - I've changed, whether you see those changes or not.  And, one of the biggest changes is that I don't have any false expectation anymore (or, at least, very little).  This is probably part of what I have come to accept as "my new normal".  I wear a mask almost every day that says "It's all good.  Don't worry your pretty little head about us" and inside, I continue to die.

And while there are still times that I mistakenly turn to someone who I once thought "should" understand and comfort me, I usually try to remind myself when I am barking up the wrong tree. As soon as I engage with those folks, I regret it. They will never understand. It is a losing battle and it makes grief SO much harder than it already is.  Max's memory is much too sacred to be the cause of so much aggravation.  Realizing all of this has changed many relationships in my life. It doesn't mean I've had to cut everyone out of my life (although, I have cut out many).  It means that I've recognized that relationships are often easier when I just resolve to connect on the superficial level and keep it at that.

At Beth's house this week, before each of the Seders she hosted, she made a toast in which she expressed the difficulty of celebrating these holidays without Max. His photos are all over her house - they decorate the refrigerator, the mantel, the kitchen table, and many other corners. She never fails to mention him. She always acknowledges the experiences that we have that she knows might be challenging for us. She encourages Ted and I to go deep with her and talk about Max and how hard this all is - which is so important for both of us.  We don't have to spell it out for her - it's just in her heart and I guess I've just come to recognize that there are a handful of people, like Beth, who I can turn to...and the others are just not available. Instead of trying to make a support system where there is none - I lean where the support already exists.

Life would be so much easier if we didn't have to learn important lessons for ourselves - because certainly people told me to look for support where it came naturally and I didn't listen.  I wanted so badly to be heard by certain people who were incapable of that.  And, I believe that there is a part of me that will keep fighting acceptance of all of this - that Maxie died, that I didn't always have the support from the people I wanted/needed it from, that life has moved on for most, that I won't know whether Max and I will be together again until I am dead too.  It's incredibly hard.

I remember feeling very confused when other bereaved parents, whose writing I'd come to count on, would suddenly stop blogging.  Had they moved on?  Were they finally healed?  I now know that what happens is that the pain changes - as does the need to share it, as does the feeling of disbelief that everyone else's life simply moved on.  It moved on almost immediately for most, it just took me all of this time to get used to that fact.

I am not sure what this means for this little blog of mine - because Maxie is in my heart ALWAYS and sometimes I still feel compelled to write about it all.  I also feel compelled to be the proof for other bereaved parents that things will get better, because somehow, they do.  Stay tuned - and "follow my blog" if you don't want to check back here all of the time. Thank you for caring enough to read.

You are in my heart always

Your life is the basis of my soul

I will never, ever stop chasing your spirit

 and I can't wait for the day when I finally catch you

and my heart is complete once again 

I love you Maxie - forever and always and with every molecule in my body

I love everything about you - your beautiful eyes, your sweet voice, your perfect smile, the way you smelled, the fact that you were mine

To the moon and back again - five million times-

That's how much I love you baby

Two sick boys

I haven't been blogging much lately. Maybe soon I'll write about my waning interest in writing about life without Max. In the meantime, we are back from our very fun trip to the East Coast to visit Ted's family and we brought back two very sick boys: Teddy and Mo. I'm so far fine and hoping it won't hit before Saturday, the scheduled day of our yearly friend's Passover. 

Mo was a good boy on our vacation but I think being out of his own territory made him extra clingy and whiney. I'd blame it on the sickness, but that didn't really start until yesterday. Anyway, he is glad to be home and today he has been getting reacquainted with his toys and taking lots of cartoon time-outs on the couch. I love this kid!!

Walk away

There are a lot of things that people say when they "mean well" that used to make me crazy that don't really anymore. Things I have learned to ignore. I am so glad to have moved out of that really raw and vulnerable place - the one where well-meaning but unthinking people hurt my feelings ALL of the time.

That being said - I am not sure I will ever move past people intentionally minimizing my grief (and therefore Maxie's death). It is not a minimal loss - it is still devastating to Ted and I every minute of every day. There are constant reminders of his not being here, even things that may seem small to others. One of those things was "international siblings day" - a "holiday" that appeared on Facebook the other day, out of the clear blue sky, as if it had ever existed before.  I felt like a punching bag after seeing about the 20th photo of friends kids smiling with their arms around each other, with the "international siblings day" tag. Seeing siblings together just about tears my insides out. My Mo should have a living older brother! Maxie should be playing with Mo & teaching him new things! How is that not clear to anyone who knows us? 

Let me explain something - it's not cute, or "no big deal" or anything small! If I tell you I am having a hard time or suffering - believe me. I am.  It is a tragedy of epic proportions to us that our child died....that Mo doesn't have an older brother...that our hearts are broken and that our lives are such a struggle. Max's birth, life and death changed the very core of who we are forever.  Kissing him goodbye, while he lay in a hospital bed and then driving away from our baby to live a life in which we will never see him again has been a complete and total nightmare that I still cannot BELIEVE we are living through. You cannot imagine the gut wrenching pain of it.  I wouldn't wish this on my worst enemy. So do me a favor - don't try and be cute & don't dare make light of the situation... And if you can't help yourself from trying to minimize it, walk away and don't say anything at all.

T squared

Writer's Note: My friend Daphna tells me she is "addicted" to reading my blog and that I've gone too many days without giving her "news".  So, this one is for her.

Ted doesn't allow me to say "Terrible Twos" but I don't think that I am not allowed to write it (double negative?).  I AM allowed to write it - until Ted tells me I can't.  

Ted calls it T squared, which also conveniently works for Temper Tantrum.

He isn't being controlling.  He is just WAY superstitious and he believes that if I say it, it will come to pass.  Unfortunately, I think it might be a little late.  Not that I would EVER call anything my little angel does "terrible".  :) (Yes, I am still against them overall, but the emotee was necessary in this case). 

Mo has historically not been moody.  In fact, he is pretty much always in either a mellow or happy mood.  Max was the same way.  A mother's dream!  But, in the last week, there have been a few melt downs.  Little ones.  Nothing big - crying on a playdate when a friend hugged him, grumpily pushing away food he doesn't want....that kind of stuff.

But, yesterday - OH YESTERDAY!  It was ON!  T squared started mildly during a playdate, escalated during dinner, went to crazy town during a bath and then got taken home during bed time routine.  I actually found it to be kind of funny, which is a clear indicator that I've only had to deal with it a few times.  I am not sure it will be funny for long.  ESPECIALLY SINCE....

Tonight we get on an overnight flight to CT for Passover.  It is officially the last flight where we didn't buy him his own seat.  I am not as worried about the flight there, as it is a red eye - but the flight home comes in the late afternoon.  

I am loading up on snacks, small new toys (matchbox cars and chuggington trains), ipad apps and movies and hoping that will help some.  I am also hoping that the appearance of T squared yesterday was just a "one off" and that it will go away and not come back until we are back at home (if ever....).  Wishful thinking?   

20 months old

I thought it was about time to catalogue some of Mo's current interests, likes, and habits.  He is 20 months old and SUCH a cutie.  I've been having a hard week (what else is new?)  This little guy saves me every day.

He loves playing with cars - trains - buses.  He rolls them around on the floor and table tops, sticks little people in them, and rolls them on tracks.  He tries to carry as many of them as possible and even tucks them under his chin when his hands are full.

He loves wearing other people's shoes.  Whenever he sees shoes on the floor, he just cannot resist sticking them on his own feet.  This can sometimes be dangerous - I have to keep a close eye on him.

He loves slides.  He has no fear either.  He will climb to the top of the highest slide in the park and just take it down over and over and over.  I think he would never stop if I didn't eventually pull him away.

He loves ketchup!  We took him out to dinner a few weeks ago and Ted put some ketchup on whatever Mo was eating and he ate it right up!  I bought some organic ketchup with hidden vegetable purees in it and I squirt it on everything savory.  He already loved fruit so now all we have to work on is protein.  So far, he really only likes fishies (not "fish", but "fishies" - the organic fish nuggets from the market that we bake.

He loves big sticks.  I never need to worry about him having toys to play with because he will always find a big stick and that will keep him occupied for hours at a time.

He loves animals - he likes animal cartoons, stuffed animals, animal noises and of course, LIVE animals.  We takes walks around the block looking for neighborhood dogs, birds, horses, cats and squirrels.  This kid loves squirrels.

My favorite thing, selfishly, is that he loves cuddles and kisses.  I cannot get enough of them so I am glad he seems to like them as much as I do.  I am dreading the day he pushes me away so I am going to snuggle up now as much as I can.

Bump

I've got this bump.  I guess it's a little suspect.  I've been putting Vita Merfen on it since getting back from Israel.  Nothing has happened though.  I was using tea tree oil on it before that - also nothing.  I'm sure it is nothing - though I am actually really not sure of anything these days.  I should just go get it checked out - and I will.  It's just that the last time I was at the dermatologist was the day before Maxie stopped breathing.  The day before my life, as I knew it, ended.  The doctor had a three month old and left the office to go pump.  I had just stopped pumping a couple of weeks before.  We talked about babies, and breastfeeding and maternal love and adoration.  It's just too much for me.  I don't know why I make these associations but honestly, the idea of going back there makes me sick to my stomach.  I could easily find another dermatologist I suppose, but that sort of stresses me out too.  I don't even know why.  Maybe writing this post will be the push that I need to just go get this bump check, because once it's in my calendar, I'll just go.  My whole life feels like a series of befores and afters and I really can't face either.  Even this tiny little bump feels completely connected to that awful day. 

Bragging

I reposted this on Facebook the other day.  I wondered if it seemed like I was bragging that I was the "strongest person in the world".  The truth is that I think I am pretty strong....especially when I start thinking about how I thought I was strong before losing Max.  That was nothing.  My strength was in its infancy.  It is shooting through the roof now.  But - when I read this quote, I wasn't actually thinking about my own strength, though I obviously only know about this kind of strength because of the experience that I've had.  I was thinking about all of the men and women that I know who've been through what I've been through.  They are the strongest people I've ever known.  Any one of them would take any kind of disease, torture, diagnosis and/or death onto themselves rather than know and live through their children's death.  Of course they would trade their own lives for those of their kids - what parent wouldn't?  Some of their stories feel more unbearable than others - if that is even possible.  Senseless, pointless, meaningless loss.  The guilt and anger and deep sorrow that they carry is overwhelming.  And still, they are some of the funniest, warmest, most self deprecating, intuitive and lovely people I have ever met in my life.  Without a doubt - they are the strongest people I've ever known.

I wasn't bragging about me - I was bragging about all of my new friends.

* By the way, it obviously should say "parent" and not just mother.  Grieving dads are strong AND overlooked.

Driving Ted's Car

Angels and Heaven and Butterflies (Oh My!)

A little conversation got started in one of my online bereaved parents groups.  The conversation is about the flowery language that people use around the death of a child - angels and butterflies and heaven and somehow it is all wistful and beautiful and fluffy. 

It does not comfort us. 

Because, here is the truth - I think all that stuff probably resonates with the people who know the family and are looking for comfort for themselves but it (generally speaking) does NOT resonate with those of us who have actually lost our child. 

My child died.  He died.  It is the darkest, thorniest, most awful, sickening thing I could have imagined happening ever in my entire life.  It has left a void in my heart that is bleeding all of the time.  It has turned my world upside down completely.  There is nothing fluffy about any of it at all.

Maxie's death feels the opposite of rainbows and angels and heaven.  It feels like blackness and hell and the devil. There is nothing sweet or lovely about it.  It is complete and absolute sh*t.

Just thought I'd put it out there. 

Unconscious

On Saturday morning I had a plan - I was going to take Ted's car to the Burbank 24 Hour Fitness to take a Bodypump class and leave Ted with my car (that has the car seat) so he could take Mo and the dogs to the dog park.  As soon as I got on the freeway, I realized that I was in my own car and had left Ted and Mo stranded.  When I pulled up to the gym, I realized that I was at the North Hollywood location (not Burbank) where their Bodypump class was already half done.

On Monday, I set off for our synagogue Mommy and Me class.  I strapped Mo in and started driving and then realized, once I got on the 134 FWY that I was not going to the temple, which is off the 5.  I'm not sure where I was going actually but I had to get off the highway and wind my way through surface streets back towards the hills.

Yesterday, I had a physical therapy appointment at 12:15.  At around 12:10, I realized that I had driven past my exit and it took me 15 minutes to turn around and find my way back.

It happens nearly every day.  And, it would be easy for me to chalk it up to "Mommy brain" or just being a ditz (because Lord knows, I can be the ditziest) - but I think it is something else.  No, I KNOW it is.  I've got grief brain.  I am largely totally unaware of details (you know - like the details of where I am going) and am basically getting through each day with a numbed out brain.  My thoughts loop and loop and loop and though it all seems normal (if not a little air-heady) on the surface, it is messed up and jumbled on the inside.  You see, my every thought contains some bit of grief in it.  Sometimes it is completely consuming, other times it is just eating away at my consciousness little by little.

During a playdate with a friend Mo's age and his older brother yesterday, I found myself completely consumed with wondering if Mo and Max would play together like these two boys.  Would they wrestle and argue or hug and kiss?  During Mo's swim lesson on Sunday, I was thinking about whether I would be in the pool with Max and another teacher at the same time that Mo was in with his daddy and their teacher or would Max be doing something else by now (like Tae Kwon Do or My Gym or who knows?)  When Mo is being a picky eater, I am thinking about whether Max would still be a good eater or if age would have made him picky....and so on and so on and so on.

Every time I get in my car, I think about whether I am up to driving past Max's daycare and the thought of that preoccupies my brain for a long time after we've gone by.  I think about the kids who went there with Max.  I wonder if their parents ever thought about Max again (I wouldn't know - I never heard from any of them).  I wonder if the new families know that my son died there.  I think about how much he loved it there.  I just think about it.  I can't stop thinking about it.  When I finally snap out of it, I am nowhere near where I had planned to go.  I just drive and drive and drive.

When Mo is asleep and Ted and I have started our evening routine (which basically consists of watching as much television as possible in 3 hours), I am also messing around on my phone.  I don't even know what I am doing - reading people's blogs, checking out Facebook, answering work emails, reading articles about life after death and grief.  I am doing that while watching TV until my brain gets completely overloaded with information and I realize I am not really paying attention to any of it - I am actually lost in my usual train of thought - about Max and Mo and what should be and how much I miss him and how much I envy "normal" families and how I wish he was remembered by the people who he loved and on and on and on.

I seem to have cultivated unconsciousness and I sort of wonder whether that is necessarily a bad thing (it feels like it is) and how long I can expect this to last. The unconsciousness is actually exhausting because though I am completely lost to the present moment, I am also completely consumed by past ones and ones that "should" be and ones that I hope will (and won't) be in the future.  I am thinking that I am losing the present moment but worried that it would hurt too much if it were any other way.