It goes without saying that everything changes for a parent when a child dies.  There are the obvious ways it affects our day to day living initially;  the brutal ache, the reminders, the change in routine, the unnerving quiet, the pained looks from well-meaning friends and family who have no idea what to say or do. (Check my FB post here for help on helping a loved one who is grieving) Then, there comes a second wave of changes because of the ways the first changes affect us.

Because grief is so varied and personal, there is no “normal” or “right” way to grieve, except to feel your way through it. This means people actively trying to move through and express their pain show it in a wide variety of ways outside of the behaviors people are used to seeing. We aren’t “Fine” and everyone knows it. There’s no sense in pretending- we’re in the middle of grokking how short and unpredictable life is, and the difference between what we have planned and worked for and the cold reality that’s been (supremely unfairly) swapped in its place.

Performing a song and dance to make someone else comfortable has vanished from our repertoire and people who need a lot of singing and dancing around every hard fact are going to have a hard time coping with grief- their own, or anyone else’s. Facing and embracing the reality of loss is inherently be painful, uncomfortable, strange, and can be off-putting for everyone involved, including the people experiencing it. We like normal. We like comfortable. We like safe. Those feelings are inherently human- but so is grief, which is none of those things… if anything, it’s is their complete opposite.

Grief is- and the actively grieving are commonly perceived as- vulnerable and unpredictable; two facets of life it seems everyone spends theirs trying to avoid. We do everything we can to predict and protect our emotions, our health, our lives and those of our children. Those of us suffering the loss of a pregnancy, infant or child are forced to stand in the mirror and have fully splayed before ourselves and the world before us that our best efforts have failed. Life looked into our pleading hearts and said, “Nope.”

That is our reality. It’s something we have to learn to carry and live with.

I still don’t want to touch that feeling with a ten foot pole… yet I, like all bereaved parents, am forced to walk hand in hand with those feelings on a day-to-day basis. We can’t forget. (Unless we medicate ourselves into oblivion, but that’s another post entirely. You can read about my original choices here and my current choices here.) Even with all the medication and meditation in the world, we can’t walk away from our experience and we wouldn’t want to. That pain is our love turned inside out, two sides of the same attachment. To let go of one is to let go of both, and we choose to hold on. We choose love and the accompanying inconceivable pain that is coming to terms with difference between that love’s highest hopes and our empty arms; it fills lifetimes.

“Grief is the price we pay for love.”

Queen Elizabeth

My 14 month old son died just over three years ago for no reason anyone, anywhere can understand. With SUDC (Sudden Unexplained Death in Childhood) as with SIDS, it means no doctor, coroner, detective, toxicologist or forensic analyst can find a single reason for the child’s passing. SIDS/SUDC parents’ grief is coupled with the weight of others’ speculation, assumption and retroactive judgment of our parenting choices.

Everyone wants to know who or what to blame so they can predict and protect the lives of their own children and separate themselves from us and our hurt, thinking, “That would never happen to me because…” Trust me, I used to have thoughts like that, too. Except the existence of SUDC means no cause, no cure. The only thing to be done is to use what time you’re given with your children and each other wisely, lovingly, carefully and hope faith or fate don’t come to test you, too.

True friends will learn to get over their fears and show up in our lives the same as we have to learn to do the same for ourselves. There will be people who come out of the woodwork that we’d nearly forgotten we have, simply to be the friends they’ve always been and show their love and appreciation for us. We will never forget these people. On our own deathbeds, we will not forget these people. Yet a greater number will slip through the cracks. They have the choice to just walk away from the pain, and no one understands embracing that choice more than we do… but it always adds more shock and hurt to the pile.

To the ones that stay:

Simple daily tasks like eating, doing laundry, taking a shower or a walk may fall by the wayside. Help us with these things. Yes, you may witness some strong emotions while in our presence. We have those, as anyone in our situation would. Conversely, you may witness a complete ghost of a person who seemingly has no emotions at all. We may disconnect and not return messages or answer the phone, seem fine because we want to remember what the hell that even feels like for a fleeting moment, lash out, not be able to answer simple questions, need company, need solitude, need to talk, simply need to be quiet and not questioned or any combination of any of those things at any given time. Just be there. We are friends for a reason, now is the time to make that apparent.

If we aren’t proximal, sending messages and texts are helpful. but can also get overwhelming- I turned my phone off for several hours/days at a time, several times. Find other ways of interacting physically- our worlds are teenytiiiinyy minuscule little bubbles and everything we can’t immediately touch basically doesn’t exist; shock will do that to you. Send a gift card for a massage, a bottle of our favorite alcohol, flowers, a card, a silly trinket, something in memorium… the options are nearly limitless, but find a way for something to physically show up in your place, even if it’s words on a napkin- even that can help us with our tears in more than one way.

To everyone: keep trying. It’s not you, it’s us- and we need you now more than ever. Think of us as in emotional & spiritual ICU- and not just for the first few days, weeks, or even months. If we had lost a limb, no one would ask if we’re “over it” or would tell us to move on. They would recognize that our entire world and thinking need adapting, and that it is going to be a long, grueling and painful process; well, we haven’t simply lost a limb, we’ve lost all the limbs, the entirety of the earthly presence and core of a little human we are vested in and adore and we’ll have to learn to compensate for that absence for the rest of our lives. Right now, we’re particularly raw and sore; we can’t even think about rehabilitation on any level, we just have to live while somehow our children did not.

Society is filled with quips and quotes people assume can help us feel better, but though we understand and appreciate the thought behind them, a lot of times what’s being said is unintentionally passive-aggressive, blaming, shaming, or hurtful. I can tell you now, nothing you say or feel is going to stand in our fire.  We can’t help it. Some of us even carry additional blame and shame because we want, we expect those things to help or be meaningful in some way, and they just don’t fit the bill.

Guess what? We wanted, we expected our children to live. Our outrageous feelings and expressions, faith and prayers fell helpless in saving the lives of our children. In the same way, yours fall helpless at the feet of our grief. It’s just the way it is; there’s nothing to say. It fucking sucks.

I’m not saying to not express your own grief at our losses- in fact, nothing could be more important for both of our grief processes. It means something to us that you are moved by our loss, truly. But your sadness belongs to you. (Read more on “How not to say the wrong thing“) We don’t need more grief on our plate to manage, we have enough. We have more than any one person should ever have to bear, ever.

What we do need is empathetic connection, not sympathy. We need compassion. We need help, and in ways we can’t even fathom because someone just turned out the lights in our world, and it’s going to take a while before our vision can adjust to the darkness.

Things we’ve heard that are NOT helpful:

“At least you (can) have other kids…”  Are you kidding me? Tell me, which one of your children is replaceable? There’s no return counter at the pearly gates where you can walk up and say, “Excuse me, I need to  exchange this boy… I endured 9+ months of wicked hyperemesis and bent my life to fulfill his every need- I’ve paid the price. I’m owed a working model.” Or I would BE there and demand they restore my original model. Except I don’t believe in pearly gates, which brings me to another list of things I hear all the time that aren’t exactly helpful.

When you tell us, “God needed another angel.” We don’t have the strength to look you in the eye and say, “Then why didn’t He fucking MAKE instead on taking one?! If you’re okay with that logic, why can’t He have one of yours instead? No? Then why is it okay that He has mine? I’m not “chosen” or “given only what I can handle”, I’m viscerally heartbroken and livid and I deserve my child.”

When you say, “I don’t know how you do it. I couldn’t. I would die…” we don’t have it in us to tell you, “I died the second my child was gone. I wish I could finish dying so the hurt would stop, but I just get to LIVE WITH THIS for years and years and years until I join them and I have no inherent coping skills for this because I’M NOT SUPPOSED TO FUCKING NEED THEM. So yeah, of course you don’t know how I do it. Neither do I. I just manage not to die every day. On that note, please bring tacos when you visit so that I eat and we have something (“normal”) to do in the meanwhile while we figure this horrible fuckery out.”

In short:

• Show up: Your presence counts. It’s enough.
• Hush up: Not to be rude or tell you not to speak -at all- but there’s nothing to be said that helps. Also, we need room the think and speak. Lots of it. See former statement.
• Clean up: Loss is overwhelming. Watching our lives, then houses fall to shit because of it doesn’t help. You can help -and have something valuable to do while trying to figure out WTF to say- by picking up.
• Bring tacos: If your friends need an explanation for this, please reassess said friendship. Okay, really though: On top of cleaning, eating goes by the wayside. Bring us something yummy, and maybe different than last time. Please and thanks.

This has been a Public Service Announcement.