Lockdown

It's June of 2020 - Connecticut's COVID-19 number of positive cases is going down, while the rest of the country is preparing for another lockdown. I'm pretty sure everyone here in the nutmeg state knows that we will likely be facing another lockdown too - eventually.

This wasn't my first lockdown, though the last one was self-imposed. I didn't lockdown with intention after Max died. It just sort of happened. This second lockdown has reminded me of the first lockdown in several notable ways - toilet paper overload, grocery deliveries, some serious contemplation about whether it was safe to leave my house, and a real resistance to mask wearing.

A few days after Max died, a friend came over with about 12 large rolls of paper towels and probably twice as much toilet paper. "You're gonna need this", she said...though none of us really understood exactly why. I remember my mother in law giving me a sideways glance that actually made me laugh  - her eyes were saying "we've had a death in the family, what do we need this much toilet paper for?". But then the shiva began (the days of mourning during which Jewish tradition is to open your home to all of those who wish to come and pay respects), and the toilet paper started rolling. People sent deli platters and brought over casseroles, and the paper towels got used as napkins and for clean up. Those paper goods were essential to maintaining my sanity in the early days - I shudder to think of having to have made a supermarket run to buy more for me or my several hundred guests. I wasn't even sure I really wanted to have the shiva at all. The grocery store was a terrible reminder of how life used to be - mundane, uncomplicated, and ordinary. I hated going there. It made me feel like an alien.

I've written before about the produce guy, who had a baby of his own around the same time as we had Max. We'd always chat about our babies. He'd coo over mine and show me photos of his. I DREADED seeing him after Max died. I couldn't imagine anything worse than having to tell this guy that I only connected with because of our babies that my baby had died. So I stopped going to the supermarket all together. Forget the fact that the market was filled with all sorts of other emotional landmines - the baby section filled with Gerbers jars and packs of diapers, babies in carts rolling around with their parents (the WORST!), and the empty pit in my stomach knowing that I was shopping for two - buying the essentials for two people who were barely alive anymore. Cooking and eating and shopping wasn't some casual task anymore - the market was a place that I went to and felt immediately aware of how gigantic the world was around me - how small and insignificant I was- how apart from the rest of the world I had become. I couldn't wait to get back home to the safety of my couch. I started ordering groceries for delivery pretty early on and didn't look back for a LONG time.

The thing is - it feels unsafe to be out in the world when you have PTSD, which is what I had. I know that I was suffering with a really really bad case and I was SUFFERING for so long. I felt unsafe all of the time. I felt like everyone I knew was unsafe for a long time. When people would announce that they were pregnant, I would think "I hope your baby doesn't die" (but I'd say "YAY! Congratulations!" because I am not a monster). When someone I cared about went on vacation, I'd think that there was a pretty good possibility that they would never come back. When Ted went out to walk the dogs at night, I was pretty sure he was going to be murdered in the neighborhood. But, (and this part is going to be as hard to read as it is for me to write), I was SURE that I would be fine - and that I was put on this earth to watch everyone I love die because the person I had waited for the longest and loved the most just had. I believed that god was punishing me. PTSD isn't logical - it's the opposite. I wanted to die, so I knew I wouldn't. I wanted everyone I loved to live - so that felt impossible. Again, don't try to follow the logic - you will get lost. The point is that the outside world felt unsafe and scary and completely chaotic. My own house didn't feel a whole lot better but maybe a smidge easier. Laying on my couch all day, every day felt the safest. I control what's on the tv, I control who I let in (and try to control who I let out), I get to cry all day if I want and don't have to worry about being seen or judged. I didn't want to wear the mask of normalcy: to make small talk with a smile when my insides were drying up and dying. The outside world was scary as shit and I wanted no part of it. I refused to wear that mask for wears. I didn't want to make myself uncomfortable for the sake of everyone else's comfort (sound familiar?)

Years have passed - nine since Max died. My PTSD is so much more under control now (though there are a few strange idiosyncrasies that have lingered (see previous post). I have used so many methods to get me to where I am today (EMDR was probably the best at bringing the PTSD down to a manageable level - more on that another time). But people, this pandemic! It is powerful. I am not just talking about the rising rate of infection and all of those months of lockdown, but also the fear of being around someone unsafe, or in an unsafe place, and having to face all of these unknowns day after day and day. It's taking a toll on all of us - even those of us living in Connecticut - one of two states where the rate of infection is declining - woot woot! (as of today - who knows where we will be next week or next month). Listen, my emotional state is not so fragile anymore. I mostly feel like a warrior. I am not worried that I will die because I've already faced and dealt with my own mortality and I'm good with it. But the feeling that I cannot control what happens to my kids or my husband or our parents is real and floods me with the memories of my last period of chaos and lack of control.

PTSD felt like having my guard up ALL OF THE TIME. I thought that if I wasn't watching carefully for every possibility of danger, I might miss something - like I missed whatever it was that caused Max to die. I was on high alert always and it was exhausting. Then, slowly, gradually, over so much time, I let my guard down. These day I even sometimes "sleep in" (until 7 or 7:30) while my children run around the house doing god only knows. That is the ultimate evidence to me that my guard is down and while it scares the crap out of me - it is also so liberating. I didn't have to wear the mask of normalcy anymore. For the most part, I feel "normal".

Liberating is exactly how this summer feels. After months of lockdown and homeschooling, we are going to the beach, to the lake, having social distancing get togethers - we even have a quaranteam (people that we hang out with - mostly outdoors - who we are more relaxed about social distancing with). We've probably all let our guards down too soon and there are definitely too many of us who aren't keeping our guards up because we just want it to be over. Here are my suggestions based on my previous lockdown experience - stock up on toilet paper (there's plenty of it now), get your groceries delivered or be very careful when you are out in public, and give lots of thought to whether it is actually safe outside. It may not be  today - but eventually it will be again. And for the love of god - please wear a mask when it makes sense. If you don't want to wear one (which I totally get), stay home. 

Cliches

Some people call them clichés, I prefer the term platitude. Platitudes are phrases that are meant to sound thoughtful and deep but that are in actuality remarkably flat and shallow. Platitudes are the things that people say to keep from having to really say anything at all. They are phrases that help keep you at a safe distance, protect you from having to feel or empathize.

When my son Max died at nine and a half months old in 2011, I was surrounded by platitudes. Pithy little banal phrases that people said to me so that they would have something to say in their most uncomfortable moment. I knew then that they were said to make the phrase utterer feel more comfortable with my loss…the platitudes, however, did nothing to help me. “God needed another angel”, they’d say, or “Everything happens for a reason”, or “sending you thoughts and prayers”. So much easier to repeat some oft heard platitude than to dig even a tiny bit beneath the surface and ask me about Max, or to express the horrific truth of my child’s death. Much easier to send me “thoughts and prayers” and then quickly look away, scroll past me, or never really talk to me again. I could feel the discomfort with onlookers even having to remember the “appropriate” platitude for my situation. The discomfort of the person trying to say something comforting felt heavy, careless, disinterested, and wrought with fear. Knowing that I was now the “scary person” that was making them so uncomfortable was an additional weight to carry – as though carrying the weight of having lost my baby wasn’t enough.

“Don’t worry”, they’d say, “you can have more children” – discounting the life that was Max’s, as if he could be replaced by the “more children” that I would have (a prospect that scared the shit out of me). Platitudes made me feel lonely and insignificant – as though my son, and the grief my husband and I were drowning in weren’t even worth the few moments of trying to find any real connection to us as fellow human beings. As if the repetition of some phrase used over and over again could be really be any kind of salve for our bleeding souls.

My grief counselor advised me that there are very few people who can actually feel real empathy – very few who would be willing to dive into the deep end with me and hold my hand to keep me from sinking. Treading water takes enormous strength, she said, and most people would rather play in the shallow end. I knew that to be true – I’d spent most of my life playing with the shallow-enders. I probably threw around all sorts of platitudes too, not knowing that the weight of those “well-meaning” words probably caused more damage than had I said nothing at all. 

Come sit with me, I'd think, and hold my hand – tell me you care, that life is unfair, that Max deserved more than he got. Tell me you know that I’ve lost the person that I loved most and tell me how much we’ve all lost that he isn’t here anymore. Or say nothing and just stand on the line where the pool floor begins to sink and watch me to make sure I’m not drowning. When I am ready, I will come up for air and meet you there.

#TerribleWritingClub

He would be nine

It’s been so long since I last wrote here.
Well, actually, that’s not entirely true. I write here all of the time. I just don’t hit “publish” anymore.
Today, our boy would be nine. It’s just totally surreal. He would be nine. I both can’t believe it’s been that long and also can’t believe that, if he’d lived, I’d have a child that old. A third grader.
I look at the third grade kids I know here and I wonder if he’d know them - because would we even be living in CT? When people ask why we moved, I tell them that LA was so expensive, and we needed a bigger house and our offers were being turned down, and the public schools here are so incredible and we just needed a change of pace..... and it’s all true. It really is all true. But also - we were running away from heartache. It was really naive and desperate. I can only speak for myself but, I needed to open my eyes to a different landscape. I needed everything to be different. And it is. It was probably a fine idea. Except for the part where I had to meet all new people, and do it with PTSD (diminishing, but PTSD nonetheless), and decide who to tell about losing my son, and try to distract myself with small town drama. That stuff has all been a lot of “work” - but has successfully kept me preoccupied with pretty benign stuff. It didn’t take the pain away though. It just packed more into my brain. the good news is, it isn’t so in my face anymore. I don’t have to drive past the ER or the daycare every time I leave my house. I’m not always worried about who I’m going to run into everywhere I go (I mean I worry - but now it’s just because I live in a town small enough that I basically can’t go anywhere without running into someone). The bad news is that I don't have the comforts of my known life around me. I don't live near the cemetery and can't drop by to sit with him. I have made some mistakes and trusted some people that were not as kind as I thought they were. I don't live in a house where he ever lived and I have very few memories of him here.
I really don’t think we would have moved had Max not died. I don’t think we would have had more than one more child. People sometimes ask me how I feel about that - you know, that we wouldn’t necessarily have Myla and Mace if Max hadn’t died. I don’t have an emotion tied to that that makes any sense in the linear way we think about stuff. I just know that I adore them all - all four of my kids.
The kids and I were talking yesterday about what Max would be like if he were still alive. This conversation is one we have fairly often. Would he be sporty or maybe more of a gamer or a bookworm, or all of the above? The kids have a lot to say about Max. Mo has a deep connection with Max. When Mo was born, the feeling of Max still being around was palpable. Mo has never met Max, but he knows him. Myla thinks Baby Max is cute. She looks at his pictures and says “Oh, he’s so adorable” (“adorable” is one of her favorite words, as are “actually”, “fascinating” and “irritating” - she got that last one from me). She knows it’s sad but she doesn’t really connect. Today she said, “Since Max is dead, can WE eat his birthday cupcakes?”. “Of course”, I answered...because that was the actual plan, which she knows. Macie has been telling us lately that when he grows up, he’s going to be Max’s daddy. I’ve decided he might know something we don’t and so I’ll be paying very close attention to his children. That would be a great motivator to try and stick around long enough to meet reincarnated baby Max.
Eight and a half years later - this is all still really complicated, really dark and heavy, and I (we) am (are) still so sad. Of course we are. I’ve learned so much - life altering enlightening revelations that have made me wiser than I could have ever imagined. I’d gladly unlearn it all for more time.
Wish we were celebrating with him today. Eating HIS cupcakes all of these years just makes me sad.

Hostile

Several days after Max died, my dad was dragged to a BBQ. “It will be good for you”, said the dragger.. and of course it wasn’t. The only way it could have been good for him is if everyone at the BBQ had come and put their arms around him and said how very sorry they were that his only grandson had just died. But that’s not what people do. Instead, nobody said a word. They went on and on about their own lives and (living) grandchildren and ignored the elephant in the room. My dad felt very alone.

In the seven years since Max has died, I’ve gotten mostly used to this. I try not to bring him up - but it’s hard. It’s especially hard when an experience I had with Max or as a first time mother is relevant to the conversation . It’s even harder for me when my experience of losing him is, in my mind, relevant to the conversation. Most of the time, the person I’m talking to, continues on with their drama, trying their best to ignore that I’ve just said anything at all. Maybe there is a quick nod. Other times, the reaction is hostile. More than once, I’ve literally been told that the situation is “not that! I’m not talking about that!” Angry. Dismissive. Hurtful. I’ve noticed it’s the same people who always get hostile. And I guess I’m expected to shut the hell up and just start listening! So I do. And then I try to be extra empathetic. And then I berate myself for days for bringing him up.

It seems I keep walking back into these interactions. The same people want to confide how awful and overwhelmed they are with something in their lives and it relates, for me, to something I’ve experienced with Max and then I’m shut down and shut up. And then I wonder why I keep interacting with these people or WHY they are choosing me to confide in. If I’m being perfectly honest, I don't very much from these interactions and relationships.

What I am learning is that most relationships are pretty one way. I am expected to listen and empathize. What I get in return is someone who likes me for those reasons. What I don't get is someone that I can also put my trust in. It's ok. Thankfully, I do have those people that aren't scared of my pain. If my job is to nod and zip it, then I suppose that is what I will do.

His heavy load

Last week, Mo and I were sitting at our kitchen table after Ted had brought the babies upstairs to start getting ready for bed. We were doing his homework together (yes, he has homework!) when he put down his pencil and said that he'd had a sad dream the night before. Before I could ask him what it was about, he followed up by asking, "Mommy, sometimes do you feel so sad that you feel like you could start crying and never stop?". "Yes," I said, "I have felt that way before. If you feel like you need to cry, you should, and I promise that you will be able to stop. You won't cry forever." Then, with that, he started bawling. I mean, really, really crying. Tears rolling down his little cheeks, shoulders shaking, little face turning red.

"I can't believe Max died", he said. "I just can't believe it. He was here and now he isn't. He was only a baby. Why did he have to die?". Such sorrow. So deeply felt.

I hugged him tight and he cried and cried. And then, "I miss Layla". Layla - our dog, who we had to say goodbye to a few weeks ago. After Layla died, we struggled with how we would tell the kids. But then they didn't seem to notice. They didn't ask about her or look for her and so we were lazy. We said nothing. On our way to the airport for Christmas break in LA, Mo asked who would be taking care of Layla while we were gone. Ted and I looked at each other. "When was the last time you saw Layla?", I asked. He burst into tears. "She's dead, isn't she?", he asked. He knew. He just didn't want to face it and if we didn't talk about it, he could pretend like everything was fine. Myla added her two cents, "Layla is at the doctors", she said.

Mo often asks me who Max is in heaven with and I tell him - he is there with mommy and daddy's grandparents and all of our pets. I don't really get into too many other people, because I think it is hard enough for him to absorb that grandparents die and that he has a big brother, who is a baby, in heaven. I'm conflicted about whether the concept of heaven is even the one that I should be teaching him - because I struggle myself with believing in and understanding what happens, if anything, after we die. I do think it is about all his tender little heart can handle at this point.

I shared this story with a bereaved parents group that I am part of. Many others in the group had similar stories - of children, who never met their siblings, but grieve nonetheless. We wondered together whether our children are grieving because they know that we are grieving, or because they think that they should be, or because they truly feel a sense of loss around having a sibling that they've never met: a sibling that they could be sharing fun and secrets and love with right now. Probably a combination of all of those things. All I know is that it breaks my heart. My sweet, caring, sensitive, empathetic boy. It's too much for a child to know. How it makes me truly envy those who don't have to think about any of this stuff. It's too heavy for me - imagine the gigantic load that he carries.

He would be seven

It is impossible to imagine what he would be like today. Whenever I try, I just picture Mo but a little bit bigger. I imagine that he'd be sweet because he was sweet. I imagine that he'd be easy because he was easy. But I'll never know. That thought alone - that I'll never know - makes me feel sick. When I think about not knowing him, this person who I felt I'd known better than anyone, I feel sick.

When our rabbi friend came to the hospital to help us say goodbye to Maxie, I asked him how long it would take before I could incorporate this loss into my life. I literally meant - when will this not feel like I am living in a nightmare anymore? He said, based on his experience suddenly and unexpectedly losing his wife, "seven years".

Seven years. SEVEN YEARS. At that time, I could not imagine seven years. I couldn't imagine how I would get through the next seven minutes. And life remained that way for a LONG time - not knowing how I would get through the remaining hours of the day. Sometimes I would try to imagine how I would get through a whole life (because it felt impossible) - but trying to imagine that was too huge. It still is. I could only focus on the time that was directly in front of me.

It still has not been seven years. It's been 6 years and change. And I know there has been an enormous shift - no matter how slow and gradual its been. (SO SLOW & SO GRADUAL). I think this is the first year that I feel like I can say that I am happy most of the time. I am not in a state of panic about the health and safety of my living children all of the time. I don't feel as though I am living in a nightmare. I don't. But I miss him as much, or more, than ever. The sadness I feel at having lost him is more real all of the time. And though I don't live in a nightmare - most days are actually happy and full of things to feel joyful about - I am definitely living a different reality than most people I know.

I would give anything for a glimpse at what life would have been like with my seven year old Max. I still believe he is waiting for me. I hope he knows that I am patiently waiting for him.

It's important to me that you know

If you met me today, you'd think I was happy. Even if you heard that I'd lost a child, or found out after you friended me on Facebook, or I sat right down and told you. I'm not saying you'd like me or that knowing about what I've been through wouldn't make you feel weird (I can tell it makes people feel weird). I am just saying, you might assume that we'd made peace with our loss. We've had three children since, they are very cute and happy kids, we hang out with friends, go out for occasional date nights, laugh a lot.....our lives seem normal and good. For the most part I guess I would say you'd be right. We are happy. We have a really solid marriage and we are grateful that our loss brought us closer together, rather than further apart. We adore our children. We have some amazing people in our lives that support us.

But, Max is always there. Missing him is always right below the surface of every thought and moment. And, I am not sure why it is so important for me to make sure that you know that, because it doesn't change one thing at all for you think that he isn't. But, somehow, I need you to know that I am never not thinking about him. Never ever. Even when you think I am thinking about something else - I am thinking about him. This is one of the reasons that I often seem distracted, why I forget things even more than I did before, why I may not always seem completely engaged. I have learned to be in two places at once. Sometimes I think to myself, "I can't believe I am not thinking about him right now", which is, of course, still a form of THINKING ABOUT HIM.

His absence is everywhere and ever present. Above our kitchen counter floats a butterfly balloon that we kept after "celebrating" Maxie's birthday in October. One wing has deflated, but the other keeps it hovering. I am sure it will be in our kitchen until every last pocket of air is gone. There are times when his absence feels more obvious: When I sing my children to sleep, when I read them Goodnight Moon, when I'm in the presence of six year old boys, when I see on Facebook what the kids that were born at the same time as him are up to, when I register my second born child for Kindergarten. But he is also right there in less obvious times - as I am sitting at my computer, driving to the market, out to dinner, laughing my head off, comforting a friend, watching television, reading a book.

I don't want you to think I've forgotten him because I want you to know that he was unforgettable. I don't want you to think that I am fine and happy without him because he was the center of my heart. I want you to know that this pain is something I will carry around forever - and that it's ok because that's the way it should be. Sometimes I want you to know how much I still hurt because I am hoping you might be a little more forgiving with me or think about how the things you say might strike a chord in me. But, more than that, I want you to know that nothing at all will ever feel as big as him dying and leaving this world before I ever had the chance to do with him whatever it is that I'm doing right now.

It wasn't about you

Dear Friend,

We have not spoken in ages. I understand you were hurt by the way I acted after Max died. I retreated into myself. I did not always answer phone calls, emails or texts. When I did leave the safety of my home, I was very careful about where I went and with whom. I understand that you took this personally. I recognize that you tried to say the right things to me and found that I didn't respond, or even worse, sometimes those things you said upset me - even though you meant well. You didn't like the way I handled my grief - I wasn't very much fun to be around. Plus, you were going through some stuff too, and I wasn't really there for you in those early years after my baby died. I still sometimes don't seem to be "all there" - that's because I'm not.

I get it, dear friend. I understand why our friendship drifted away.You are not the only one who decided it would be easier to walk than to stick by my side. Still, I have been thinking a lot about it these past 5+ years and I just have to tell you (because it seems like you still don't really know this): it wasn't about you. The circle of people that made me feel safe was very small - I am sorry you weren't one of them. I had nothing in me at all to try and make you feel comfortable around me, because I was so uncomfortable myself. I just needed to be with people who naturally felt at ease being with someone in pain like I was. However that made you feel, it wasn't really about you. I am sorry that I was a drag to be around - it took everything I had in me to be around other people at all. I was fighting for my life. I promise, it wasn't about you. I know you tried to say the right thing, but for whatever reason, at that time, "the right thing" you said didn't resonate with me. It wasn't about you. Your ego was hurt, and I get that - but it wasn't about you.

So many of my friendships have been renewed since the really early days, most people realizing that my "rejection" of them wasn't really "about them". So many people kept their expectations of me fairly low, and didn't let their egos get in the way of supporting me. I am lucky because I know it isn't easy to stick by someone who is sullen, angry, and struggling. I am blessed to know real friendship, devotion and love. If I hurt your feelings after my baby died - I am sorry. I was, and continue to be, half the person I once was. All I can say is that I am working on it but it isn't so easy and also that it wasn't and still isn't about you. 

Maxie's Sixth Birthday

The night before you were born, daddy and I took a class at the Pump Station in Santa Monica.  I was eight months pregnant. That night, I got up to use the restroom at around midnight and my water broke. That was the beginning of our journey with you Max.

You were beyond special. I couldn't believe you were mine. You were so little, so vulnerable, so sweet. I spent hours walking around the neighborhood with you while I was on maternity leave. When I went back to work, the only way I could get through my days was by counting down the hours until I could go pick you up.

I'd never loved anyone or anything as completely as you before. My emotions were in free fall - and everything revolved around you. Every picture I took, every feeling I felt, every plan I made. You were my everything.

And then you were gone. In an instant.

Just gone.

The shock of your death, just as I was in the middle of celebrating and planning our new wonderful life together, will never leave me. In the beginning, I thought maybe someday the horror of losing you would subside, but it hasn't. How could it have happened? It still makes no sense.  None.

Today you would be six. We'd be running around town picking up last minute stuff for your party this weekend. If I'm honest, I resent that we won't be running around town picking up stuff for your birthday.  I am beyond angry that you were cheated life at such a young age. I hate that your daddy and I were cheated out of spending our lives with you.  I am still so angry.

You would be perfect at six.  I know this because you were perfect.  Everything about you: your scent, your eyes, your soulfulness, your sweet demeanor. You were everything to me and in many ways, you still are. There is no me without you - even still.

I would still never trade my nine and a half months with you for a lifetime with any other kid on earth. I feel so lucky that you were mine - even if this loss has caused me a lifetime of pain.

We'll be celebrating you tomorrow.  I hope that somewhere you are waiting for me and that you know how much I still adore you. Happy Birthday to my baby boy.  I love you to the moon and beyond.

XOXO
Mommy

"You and I will be together until the universe dissolves" - Rumi

Fifth anniversary reality check

Perhaps you imagine me, on this morning, smiling and wistfully sighing, my eyes knowingly turned upwards, as I think about my child's spirit dutifully watching over us.

Perhaps you see that we have three beautiful, funny, and perfect children that bring us so much joy every day (the absolute healers of our souls).  You see that I have a really solid marriage to a truly awesome guy.  Maybe you've noticed that we seem to be doing well, despite that unfortunate "incident" that happened with our son, Max.

It brings you peace to see that life has become good again for us. I am no longer blogging every day about my deep unrelenting pain and if you spend any time with us, you recognize that our senses of humor are back in place as are most of our social tendencies.

I wish all of this were true or at all really indicative of what is in our hearts. The reality is a lot uglier than that. Five years later, I still find myself feeling completely lost and alone most of the time.  Five years later, I feel like I am somehow still waiting to see how this loss gets "resolved".  Five years later, we just don't talk about it all that much with anyone other than each other anymore.  When I do, I often regret it. I think that I have finally learned that most people don't really want to hear my thoughts about my son, and, I don't feel the same need to push it that I once did. Where once your discomfort felt like a slap in the face, now it just feels like human nature....and I mostly get it.

Ted woke up this morning and reminded me that he had said he'd shave his beard after five years - the beard he began growing on July 19th, 2011 - the day Max stopped breathing at daycare. The beard that was meant to be the outward representation of the changed Ted - the guy who went from a fun loving, glass half full, excited new father - to someone more deeply contemplative, more cynical - someone who'd had the "glass half full" half punched out of him. He's not ready to shave the beard because he's still that "afterwards" guy. I'm not ready for him to shave it either.

It seems crazy now that we really believed after five years, we'd be back to our old selves. We now know that we will never be the same people we were. Never.

The good news is that I've sort of stopped listening to the unhelpful stuff people have had to say.

For years people told me that we are lucky Max "was only a baby".  Those same people are now posting photos of their babies all over social media, they are the same people who kvell about the birth of their new grandchildren, the same people who cry about not having babies of their own. 

He didn't live.  And it wasn't because we didn't love him enough, or he wasn't tenacious enough, or he wasn't "a fighter", or we didn't pray enough. I know nobody ever said those things - but I read between the lines.

I know, and don't necessarily feel the need to always remind those who make the comparison, that Max dying while at daycare was not like your dog dying, or your miscarriage, or your ninety year old granny passing peacefully after a long a beautiful life. I never said those things aren't sad.  I was very sad with my first miscarriage, very sad when my grandparents died, and still feel a deep longing for my sweet Jake. Those things are all very, very sad.  But I get it now that you'll never really know that the comparisons make no sense....and aren't really helpful.  "To compare is to despair", said our grief counselor all of the time during that first year.  I didn't really get it then.  I do now.

We are still grieving...maybe even more in some ways than in the beginning...but the trauma isn't as paralyzing. We are still angry, and sometimes the most unexpected and slight thing can turn it back on......but it's not like it was.

That being said, we still think about him all day every day...in every moment that you think we are not: whenever we hear of a new pregnancy, whenever a new baby is born, whenever a child turns nine months, or ten months, or five years old, or graduates from pre-school, or starts kindergarten.  Whenever someone shares photos of their baby on Facebook (even though they are "just babies"), Whenever we hear how much a child who's going away to camp, or college, or a sleep over will be missed. Whenever our living children play together, or play with other kids, or play with kids that are the age he would be...or was.  Whenever we see pictures of you cuddling your child that is the age our child would be, should have already been by now or once was. Even if the thought is sometimes only a flash - it's always there.

I really don't think we are ever not thinking about him.

In the beginning, I wanted everyone to know that he lived. He was here!!!  He was special. He was mine. But, I now recognize that it only matters that we remember him, that we love him, that we continue to find ways back to his heart. There is nothing I can do to make him important to anyone else in the whole world.....and that is ok.

After all of these years - which have felt like the blink of an eye and an eternity at the same time - he feels too special to share outside of the safe wall we've built around our little family. Just because you hear of him less, doesn't mean he is any less present for us.

Max was our everything.

He was everything. He was our everything. And, it still makes no sense at all.

My sweet darling boy -  You are my heart

I will be searching for you in everything that is and will ever be

I love you more than any feeble words are able to say

Everything that you are and were is in me forever
and the thought that I might see you again is what keeps me going.

I love you Max - to the moon and the stars and beyond.

"You and I will be together until the Universe dissolves". - Rumi