Tag Archives: Support

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Memes and GIFs are two words that came out of virtual obscurity…literally, in the last several years and are now household words on the tongues and lips, assuming you can correctly pronounce them, of seemingly everyone in America. Pop culture and the world of the internet have wedged their way into every detail of our lives for better or worse.

Almost daily I find myself and my husband or friends texting these quippy little quotes back and forth to each other. Some are just either so profoundly fitting in a situation or, more likely, just incredibly funny.

Of course you can find memes, often comical or at least satirical, to suit any situation; political issues, to family gatherings, workplace frustrations, etc.. But sometimes there are those meant to speak to the deeper feelings we find ourselves dealing with when words of encouragement are needed.

As the mother of a child who has passed, I see a lot of these posted on Facebook, Instagram, and even Pinterest from others who have traveled the same road I am on myself. And occasionally I post them too. Once in a while one comes along that just speaks so clearly to how I’m feeling that it feels like it could’ve been taken from my own personal experience. I guess before the modern day meme came along this duty was reserved for song lyrics sang (specifically to us) over the radio or the occasional Hallmark card – sent via snail mail, of course.

All too often though, I find that while the sentiment may align with my feelings, the execution is lost on me. A metaphorical ball metaphorically dropped, if you will. I recently ran across one of these little posts which proclaimed that “When you can tell your story without crying, that’s how you know you’ve healed”.

meme

Now, “healed” is a relative term to varying personal degree for everyone. While it may be true for some, no blanket explanation could ever cover such a wide ranging, deeply emotional, and profoundly personal topic. I just want to say to the thought expressed in these seventeen all-knowing little words: bullshit.

If this has been your experience and you have gotten to this point, I am so utterly happy for you and I encourage you to celebrate the place you’re in in your journey and the accomplishment you’ve made. Hopefully the peace that encompasses it is a blessing to you in your stay. I can only account for my own experience, of course, but what I can say about my journey is that the absence of tears runs so much deeper than being considered healed at the lack of their presence.

I will never be healed of the loss of my daughter Not in the conventional, physical sense anyway. Not until my time on this earth comes to an end and am I reunited with her in spirit. Until that time, I am forced to wander around broken, like may of us are. Shattered like a mirror due to myriad circumstances we’ve encountered and endured. No matter how well you glue the pieces back into place the evidence of the break remains a part of the structure forever. The mirror may be reconfigured, but it will never not be broken. Broken is not bad or wrong, it’s simply the sum of the experiences that have taken you to become the person you are today. With rich experiences, both good and bad, we’re all weaving the intricate tapestries that are our lives.

Does that mean that healing cannot happen? No, it doesn’t. For some it may. Yet others may unsuccessfully or unwittingly chase it for the duration of their existence. Some may simply adapt to the new being they have become. And still many more find their new identity in the pieces of their life and spend the remainder of it romancing and nurturing their newfound brokenness, essentially becoming its prisoner. All of this in both positive and negative, healthy and unhealthy ways. It’s just that tears are not necessarily the barometer of health.

Not expressing tears for me, simply means I’ve become accustomed to my situation. I am used to it. There is no longer any shock or novelty in child loss in my life. I am desensitized to the idea of what most people would find too horrific to even entertain in their mind, i.e. the “I can’t imagines” because I have already lived it.

It’s simply another form of survival. It’s part of how I mitigate my pain. I have many wonderful aspects of my life to focus on, though they still doesn’t lessen the pain I feel in her loss. I just refuse to let that pain swallow me up. I can’t well up and break down every time my daughter’s name is mentioned or someone asks me how many children I have. In every part of my life; my job, my writing and speaking, my social relationships, my daughter, and her death are front and center. Not only would it not behoove me to break down at every retelling of her life’s story, but (for me) it wouldn’t honor her, either. I just don’t let tears overtake me. That doesn’t make me any more or less healed than anyone else. It’s simply a personal style of functionality.

I carry on with my life. I am happy, healthy, and productive. I tell her story a hundred times in a row and don’t shed a single tear. And yet, not always, but from time to time I may well up at the site of a dress hanging on a sales rack that I wish I could buy her. Or I pause to catch my breath whenever a particularly difficult hymn is sang during church services.

Grief and pain coupled with crying, though certainly not mutually exclusive, are not necessarily married to one another either. And with a situation so personal, so devastating, who is to say that everyone I interact with is worthy of my tears? For me, my tears are an intimate expression of my love for my daughter, and something that I’m accustomed to compartmentalizing, not sharing openly.

When it comes to grief, of any kind, please don’t oversimplify these nuances by applying generic thoughts on such a complex topic. There is no handbook to reference. There is no cookie cutter for grief. Someone may not be meeting what your expectations of grief are, but that doesn’t mean that they should adjust their expressions, barring physical and mental harm, of course. More likely it’s an adjustment of expectations of those grief expressions, and a more open discussion that’s required for deeper understanding.

Most importantly, just be kind and supportive. Offer a listening ear when needed, and don’t feel that it’s your duty, or even within your power to ‘fix’ them. Just allow your friend, coworker, or family member the time, space, and respect to grieve in the way that’s comfortable for them.

I encourage you to share you thoughts on what your personal barometers of healing have been in your own life, in regard to any event you’ve experienced. Let us come together to transform
the ideas of what both grief and healing look like to the world outside our doors.

Numbing the Pain

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They say it only makes it worse when you finally feel it. Addiction is a prison of its own making. A cycle that’s hard to break, to say the very least. And when loss or grief is added to the mix the welling up of emotion surrounding the issues at hand often seem to propel one further into that cycle, before if ever, propelling them out of it. Mackenzie Johnson is the daughter of a dear friend, Lynette Johnson. You may have seen some of my writings referring to Lynette in one way or another before, but you’ve undoubtedly seen her pictures. Any of the photographs of my family on this site are Soulumination photos. Lynette is the founder of this wonderful organization that provides the most lovely, candid, real-life photo shoots, free of charge for families of terminally ill children. Families like mine.

I met Lynette when living in Seattle, shortly after Miss Elliott was diagnosed with Tay-Sachs disease. A friend I’d made online, another mother of a child with Tay-Sachs had recommended I contact Lynette and Soulumination for photos since we both lived in Seattle. I found out that Lynette had traveled to the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference nearly every year, and that she had personally taken the photos of nearly every family in this community across the country, and here she was right in my own backyard.

This vibrant, caring woman who was such a bright and shining light of positivity in the lives of so many families suffering through anticipatory loss or grief itself, was stricken with Cancer. And what’s more, at the same time, her daughter, McKenzie was suffering through the depth of years of addiction and unable to come to terms with her mother’s illness.

In her own words below, Mac describes the process of finally feeling all those feelings she strove so hard to keep at bay for so long, and the impact they have on her now as she’s navigating her way through feeling them authentically and coming to terms with (and finding out) who she is.

“For years and years I wouldn’t let myself feel anything. When one drinks it shatters and suppresses all feelings, the good and bad ones. I did not realize exactly that this is what I was doing. It was a long time in the making, but eventually I found that out for myself.

All those years later when I got sober, it was the pain that hurt the most. Foreign and new it crept in and for the first time, I was powerless to stop it. Pain over the realization of what I had done over those years, pain over my mom’s recent cancer diagnosis. Pain over deaths I never allowed myself to grieve. When my grandparents died one by one, I hid away, not able to join in proper grievance, for alcohol was my comfort and my pain. My last surviving one shares in my disease. It goes untreated, and still I cannot connect.

I knew I drank differently from the very start, I also was aware that I was highly susceptible to becoming an alcoholic. I was already familiar with it because it runs in both sides of my family. Once I started drinking I could not stop. To have one or two drinks is impossible for me. Soon I was drinking every day. I noticed that I was different from most of my friends; my tolerance was greater and I had no end point. I would drink until I passed out. This kept me from visiting much or living near my family. I did not want them to be around this, to know this part of me. I also did not want them to try and stop me, and I knew they would. I made myself independent in every way so they could have no say in the way I lived my life. Until the way I lived my life would lead me very close to death.

When I found out my mom was diagnosed with lymphoma I got drunk immediately after getting off the phone. I maintain that my mom’s diagnosis got me to such a bad place that I finally accepted the help that had been long offered me. One day soon after, I woke up in my boyfriends’ bed, where I had not gone to sleep and I looked down at my wrist. It had happened again, a hospital bracelet. And no memory of it. I went to my phone and texted my sister. My recollection of that text is send me anywhere you want. It probably did not say that exactly. I then poured myself what I knew would be my last drinks. I was passed out by the time my sister had flown in that afternoon.

I was living in California when my sister came down to pick me up. We were going to a treatment center in Canada. I refused to stop in Seattle overnight because I thought I would change my mind about going, but I said we could still stop for a moment just to see mom. We stopped at our childhood home. Mom came out, very weak, sick, and bald, using a cane. She hugged me and whispered in my ear “I’m so proud of you.” How could she have been proud of her alcoholic daughter? At the time it surprised me, but gave me hope. It was not until much later that I knew exactly what she meant.

I’ve been sober for almost four years ago now, but the feelings didn’t flood in for me. They have never come easy for me. I’m still finding them today, still finding ways to express them. I still don’t like to feel them sometimes. I like to shove them away, to not show you that I can be vulnerable too, that I have feelings too now. I can cry in front of complete strangers, but not in front of my family. I struggle with relationships with those who are supposed to be closest to me, for it is them who can see the real me. And sometimes I am unsure of who that really is. Vulnerability is a scary word for me, when it should be one of empowerment, strength, beauty. But a part of me struggles and believes being vulnerable to be weak. What will happen to me if those I love see my weaknesses, my feelings, my shortcomings, struggles, my pain? They will only love me for them I am sure.

After all these years of struggling with acceptance, I know that I still haven’t let my feelings on my mom’s diagnosis fully surface. It is hard for me to listen to her talk about it. I refuse to touch her nodes when she wants to see if they have grown. I don’t know why. Maybe if I don’t then it means it isn’t real, that I can disconnect a little longer, protect myself from the pain.

She has been through treatment twice now and will more than likely venture into a third in the near future. When I agreed to my own treatment she was already in chemo. She was very weak and very sick, so sick that she vows she will never do chemo again. I honestly believe she would rather die.

I am a work in progress, I will attend meetings the rest of my life. I will work for my sobriety and sanity the rest of my life. For me there is no cure, only recovery. I spend a lot of time in the mountains now, alone or with a select few other people. I cannot describe it but it is special and spiritual for me. I also believe it is necessary for my being. I literally carry a lot of weight on my back out there, a burden I can control. I look at myself every day, my actions, intentions. I am far from perfect. I see myself do things and while I am doing them I know that they are not who I want to be. I try not to do them again. I try speak up when I am hurting, when I am sad, when I need help. It is hard. I have seen a lot of loss, from cancer and from addiction. I cannot control what my mom’s disease will do, but I can control how I act today and how I love today. I refuse to numb the pain anymore.”

Mac
McKenzie, with sister Llewelyn (center), and mom Lynette

McKenzie is raising money for her mother’s Big Climb effort to benefit the Leukemia and Lymphoma Society in their continued dedication to fund research for a cure. You can join Mac at the website below and offer your support as well.

http://www.llswa.org/site/TR/Events/BigClimb?px=1651338&pg=personal&fr_id=1510

Give Yourself A Medal

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Give yourself a medal. It’s what my friend, Jennifer Pastiloff urges the attendees of her writing and yoga retreats to do for themselves. Her basic theory is that no one else is going to give you one, so you need to give yourself one. Go ahead and be proud of any and all accomplishments you’ve made, and acknowledge them.

Today, I’m following that advice. Today is the fourth anniversary of the day my daughter died, and you know, I’m giving myself a medal for not losing my effing mind.

This loss is hard. This grief is hard. Every day without her is a burden I am forced to bear for the rest of my life, and It. Is. Hard.

In the days leading up to her birthday and the anniversary of her death each year I find myself becoming increasingly scatterbrained, anxious, and worrisome. I become short tempered with my husband and anyone else who has the unfortunate experience of being around me in those days. And in small ways, I just sort of inwardly ‘lose’ it.

While texting with a friend yesterday who knows this type of loss firsthand, she mentioned how the mere anticipation of these days cause her to break down, and by the time the significant date rolls around she’s practically numb.

I so get that. That’s me. Soul Pic

Acknowledgement helps. Each time the people around you take a moment to say your child’s name, recant a memory, or just let you know you’re on their mind a layer of pressure is lifted. Grief is lonely, and when those around you show you comfort and compassion, it can pull us out of the feelings of isolation we so often live in.

We may all have people in our lives who will never mention our children at all. The anger, disappointment, resentment, and hurtfulness that I’ve had to reign in and snuff out has often caused me a great deal of animosity, and trepidation. I don’t always deal with those feelings in the most graceful of ways, but such is the nature of grief. More so, it can be an unnecessary burden, a challenge, in learning how to accept that those relationships are whatever they are, and there is nothing you can do, or should have to do to alter them.

She’s dead. No one has to show up for a birthday party or buy her a gift. It costs nothing to tell someone you are thinking about them. It doesn’t take much time or effort to let someone know you remember their dead child. And yet, for some, those outputs of miniscule effort never happen. You may be thinking about the family or friend who lost their child, but they need to hear it.

It takes a lot of patience, love, and acceptance to move on when a call never comes or your child’s name is never spoken.

But when it is, the joy that fills your heart is unmatched.

My dad calls me all the time. He makes a point to talk about my daughter throughout the year. He tells me about his memories of her, and when he talks about her to other people. And he makes specific effort on her birthday and the day of her death, even the days leading up to, to let me know she is on his mind, and in his heart.

It means more to me than he will ever know. Ever.

And that’s all it takes.

So instead of focusing on who isn’t there, the phone calls that never come, or the messages I don’t receive. I’m choosing to stay focused on the wealth of support I do have, and all the remembrances that come my way. I’m giving myself a medal for not losing my mind, because I’m still standing, that shit’s hard sometimes.

***

If you’d like to honor Miss Elliott today, a donation to the National Tay-Sachs and Allied Diseases Association would be greatly appreciated. http://www.ntsad.org

For more amazing insight on humanity, wonderful writing, and info on how you can be a part of one of her retreats, visit Jen’s site: http://themanifeststation.net/

A Brief History of Grief

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“Mom, how does this look?” she asked seeking both confirmation and approval. “It looks good,” I tell her. And it does. Now in middle school, on the precipice of becoming a teenager, she’s starting to learn how to do her makeup. I don’t mind her growing up at all. I’m also glad she seems to enjoy many of the same things I do and that we can share those with each other. Then, there are ways in which she is solely her own person. Not I, not Loren, but a new person growing and changing, and becoming someone all her own. I relish it. I am thankful for it.

We, of course, weren’t granted such a happy fate with our youngest daughter. Not only did she die, but we knew she would, which, in the grand scheme of life and parenthood, may have been the cruelest fate of all (for us): living with the knowledge of her impending death at such a young age, and not only that, but before her death was to occur a relentless genetic monster would take away all of her physical and cognitive abilities.

Let me stop right there to make sure that you know that her life was nothing but a blessing to us. Every moment we were allowed to spend with her was a magical time that taught us the importance of unconditional love, and value of our own mortality. And it changed us in ways we’re still discovering only now, four years after her death. Some for the better, some for the broken.

We are strong, it’s true. Sickeningly so. We just don’t want to have to be, that’s the thing. That’s why people who are in our position often hear repeatedly how someone else couldn’t imagine. They just don’t want to. We don’t either, but unlike you, we didn’t have a choice. We hate to hear that you think we’re strong. Especially when we feel anything but. And when you tell us this, you may not realize it, but it often adds undue pressure to our burden. Pressure of an image we feel expected to maintain.

Four years later I know that the choice we had was whether or not to fight this battle together. We chose to do so with each other. And it’s not just that seven years ago, when we were told our daughter was dying that we walked out of the hospital and made a conscious choice to stick together, it’s that we continue to do so each and every day, even now.

Can we just be real? It is not easy. We have problems. Some of the same problems you probably have, but others that whether we would have had or not had we not been through the death of our child is only speculation at this point. The point is, they exist, so what do we do about them?

I think we’ve always tried to be proactive in acknowledging an issue and trying to work through it. I think communication is one of the cornerstones to ours or any marriage. But that doesn’t mean we always practice it. It’s worse when you can’t even put your finger on it yourself. How, then, are you supposed to communicate that to your partner feelings you yourself can’t understand? Especially if it’s something you’re not proud of, or you might even be scared to admit to yourself, let alone anyone else.

We haven’t always been kind to each other, but recently, with both of us separately on the verge of falling apart, we made a change. We both got honest, with ourselves, and with each other. It was a terrifying admission on both of our parts, but also, in some small hopeful way, freeing. A burden began to lift just by admitting our faults, and choosing to do something about them instead of continuing to spiral into oblivion. Neither of us wanted to live the way we were.

To be candid, Loren deals with fits of explosive anger. Deep seeded anger simmering below the surface that began in his childhood, but has been amplified into rage over time by the events of our shared life and the lack of dealing with these existing feelings for so many years. It’s all consuming. It lurks around every corner. It bleeds itself into every aspect of his life and affects his actions and behaviors in an unhealthy manner. No steps can ever be light enough as to not crack those egg shells. It’s something he’s realized cannot be mind-over-mattered through on his own.

I on the other hand have only recently become aware of the anxiety that’s swallowed me up and refuses to release its grip on my mind. In seemingly normal every day occurrences the fear of the what if overtakes my ability to remain calm and collected. To say I worry would be a vast understatement. The need to maintain the upper hand and to constantly reassure myself that everything is okay has turned me into fearful, controlling, unforgiving, judgmental shell of the formerly vibrant person I feel I can no longer recognize. I’m constantly on edge, lashing out, waiting for some other shoe to drop.

He’s become a scapegoat. I can’t admit I’m wrong.

Enough.

Enough trying to be strong.

Enough pretending to be ok.

Enough trying to prove that we are.

Our daughter died, and we are not ok.

It hurts so much.

But we want to get better.

We won’t let this form of grief be our undoing.

Loren has sought out counseling, recently, which has been a life changing experience for him, and for us. He’s gaining the tools to manage his anger, and to work through is feelings in a productive way. I have finally admitted to myself, and to him how swallowed up by fear and anxiety I feel I all the time. Why it is I’m so controlling, how scared I really am. I too, need to address this issue, and I think finding someone to talk to about it and mitigate the feeling would be a good idea for me as well.

We’re not there yet, wherever there is. Though we are getting there. We’re still staying the course. Someone recently asked me when grief goes away. “Never,” I replied. Grief is not a place to pass through and come out on the other side of, but a continual journey once you’ve been set on its path.

I don’t want you to read this and think that we think that we’re so awesome that even when we have an issue we make a spectacle of how awesome we are at working through it. I just hope that if you read this and you have any of these feelings that you can be real with yourself, and maybe even with your partner. I’ve had to learn that there’s no shame in not having it all figured out or under control. The only shame is in letting everything crumble around you without doing something about it. I know you won’t judge us, you can’t. You haven’t lived through our loss. And I want you to know that no one else can judge you, either. So if you read this and you suspect you might be a dark place like we were, please do something about it. It’s a lonely place to be, and I don’t want that for you.

I Don’t Cry For You

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I cry for me.

I wear my smile like a garment. I take it off each night and carefully fold it up, setting it beside my bed. I gently pack it into its box. I wake and lift the lid to check and see if it’s still there. Every day it is. I rise, smooth it out, repair the fraying edges and put it on again every morning. In the solace of the evening I allow myself to feel the weight of my empty arms. To acknowledge the burden of a heart that will never numb. To choke with each rise and fall of my chest in every breath I take. And to smear mascara across my wet cheeks when I blot my eyes. But all day long, I smile.

I cry for me.

Because I miss you. Because I love you. Because you’re not here with me, and you never will be again.

In two weeks I’ll be at a conference with most of the children like you who exist in this country. Families like ours. Mothers, fathers, children all around who live the life I live. I will wear my smile. I will carry my head high. My clothes, my fingernails, my hair, my eyelashes will be perfect. I will look “put together”. I will both laugh and lament. I will both console and commiserate. I will not hold those children. I will be offered the chance to do so with each and every one passed around by mothers who are proud, or worried, or hurting, or desperate to connect who will speak to me and offer but I will not hold their children. I am scared. It hurts too much. I know my limits. It is the only time my smile would break.

And I would cry for me, because of you.

I cannot let that happen. I have to be very careful with my smile. I have to wear it every day.

The 37th Annual NTSAD Family Conference will be held April 16-19, 2015 in Reston, Virginia. Families will gather from all across the USA and beyond to learn about research, support one another, grieve together, and just to be with those who truly understand what living life with a terminally ill child means, no explanations or apologies necessary. To learn more, visit: http://www.ntsad.org

Sorrow, Strength, and Seahawks

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I’ve lived in Washington state (nearly) my whole life. As a child my family moved here from Oklahoma, where I was born, when I was just one year old. My husband and I traveled to Texas for his work and put in a two year stint there. It was just long enough to get the job done before we came running back up to the Pacific North West. Both of us having lived on the eastern side of the state before, this time we were one our way to Seattle, just about as far west as you could go.

Eastern Washington and Western Washing are two very distinct worlds all their own separated by the Cascade Mountains. I grew up in three hundred day of sunshine a year surrounded by desert foot hills covered in sand an sagebrush. I’ve been told that Rattlesnake mountain, just outside of town is the highest peak west of the Mississippi that doesn’t have a single tree on it. If you don’t know much about Washington state, you’d probably never guess that we have a vast desert at the center of state itself. Western Washington, on the other hand is a lush green oasis. There are rivers and streams everywhere, forests so thick that you can’t see them for the trees, and mountains topped by alpine glaciers, and the cliff-lined vast Pacific Ocean.

Moving to the other side of the state, and back from Texas was an adventure. It was January, 2008 and on the road home, I discovered I was pregnant with our second child. New job, new place to live, new baby, oh what and adventure it would be.

Miss Elliott was born on October 3, 2008 and we would live just outside of Seattle for the next six years. Of course, as it so often does in life the adventure we had dreamed up came to resemble nothing of what we had planned. Miss Elliott was born with Tay-Sachs Disease and she would die on February 3, 2012.

I despise the winter. The cold, and death it brings. The darkness of Seattle, inundated with it’s never ending rain. Sometimes it’s just too much to bear. But in 2013 the Seattle Seahawks began a winning streak that was encouraging and uniting the city, giving all of us something to look forward to, and something to be proud of. That might sound petty, or stupid, or even superficial but being a part of the synergy of the city itself was electric. It was as if everyone came together for a common goal. It inspired, and strengthened, and for me, it distracted.

As the Seahawks continued their winning streak and went into the playoffs I was lucky enough to go to the game in which they defeated the New Orlean’s Saints. You couldn’t believe the roar of the crowd in Century Link field. The intensity was palpable. With just one game left in the post game season, if they won they would be on their way to the Super Bowl. The previous Super Bowl had been held on February 3, 2013, and marked one year since Miss Elliott’s passing. Some friends invited us to a party. Loren said yes before he realized the date, but we kept our obligation and attended anyway despite my desire to remain home in bed. In the end, I was glad for the distraction. So this next year, as we made plans to attend their party again, on February 2, 2014, I was happy that our Seahawks were going to be playing and it gave us something positive to look forward to.

Last summer we moved away from Seattle and back to where I spent most of my childhood to what I consider to be my hometown. Here we are in a new house, with new jobs, and a new school for Skylar, and oh yes, finally, the sun. But now for the first time since we’ve moved, as we circle back on another year and our Hawks have done it again, I find I miss Seattle. I miss the energy and camaraderie swirling around the atmosphere. I miss the unification of all Seattleites in a common goal.

February 3, 2015 will mark the third anniversary of Miss Elliott’s passing. This thought is especially troubling to me because of the fact that she passed when she was three years old. Meaning that this year there will come a point at which she will have been gone longer than she ever was her here. I’m happy that we’ll be going back to our friend’s Super Bowl party again this year, to be there in Seattle with the friends who knew Miss Elliott throughout her life and to cheer on our Seahawks as they defend their title of Super Bowl Champions. I’m happy our boys made it to the big game once again. And on February 1, 2015 I’ll once again be happy for the distraction that takes my mind off of the sorrow I feel, especially strong, at that time of year, this year in particular.

It may only be just a game, but oh, for so many people it’s so much more. Go Hawks!

No Words

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“You can be amazing you can turn a phrase into a weapon or a drug” -Sara Bareilles, Brave

Words hold power. The power we assign to them. We get to decide what they mean, and we can do so on an individual basis. They can mean one thing to one person and quite another to someone else. In this situation we’re at risk for our sentiment being lost in translation, so to speak. Words convey thoughts, feelings, and emotions. With them we can tell stories and share moments in time. We can even recall memories and give those meaning as well. They can also be used to hurt. Though they may not break your bones the way we’ve been taught that sticks and stones will, sometimes words will hurt you even more. All the words in the world, all of their uses, meanings, and inferences, and sometimes we can’t seem to find a single one to do us justice.

What do we do when words escape us? How then do we convey those thoughts and feelings whelming up inside of our hearts and minds?

This week I found myself standing in front of the greeting card section of my local grocery store. I was there to buy a card to send to a friend. I wanted her to know I was thinking of her. I wanted her to know I was remembering her son’s life, the anniversary of his birth and subsequent death later that same day. I wanted her to know he is not forgotten.

I stood there, in front of the cards searching for the right one. The one to convey my sympathy, unfortunately, my empathy and also comfort to her as well. There were cards that expressed you were thinking of someone, cards of support, and cards of sympathy for loss of grandparents, parents, spouses…and even pets. Yes, pets. But there were no cards for loss of a son or daughter. Loss of pets, but not of children.

They don’t make cards for that, not that they stock at that store anyway. They don’t make words for that. When you lose a parent you are called an orphan. When you lose a spouse you are called a widow(er). The very idea of loss of a child in our society is so unthinkable, unimaginable, horrific, and taboo that we do not even have a word for it. It is literally unspeakable.

Nothing works more efficiently to keep uncomfortable, unenviable, hopefully ignorable pieces of society locked away in the shadows than lack of speech. And that’s exactly where society wants to keep it, us. Why? We’re scary. We know you want to keep us at bay. We get it. We know how daunting it is to talk about, how difficult to imagine, and truthfully, how alarming it is for you to even think to pull us from the shadows and to be forced into the light of knowledge to concede that you look just like us and in further consideration that you could, in fact, be us. After all, isn’t everyone afraid that if our light were to shine too brightly and you got too close that your wings might melt?

Nothing makes us feel like more of a monster to be hidden from than being expected to exist only in those shadows.

It’s a simple sentiment that means the entire world to parents of lost children; we want to know that you still remember. We know they are gone. You will never remind us of that fact. We live with the scars of their loss every day. We just want to know that you remember they ever were here in the first place. Not to make you uncomfortable, not to punish you, or push you away but for our own soul’s soothing. For our broken heart’s sake.

My child lived. She was a person. She mattered. I have thoughts and memories of her that permeate every day of my life.

Sing her name unto my ears and let the beauty and magic of her spirit radiate into my heart and soul.

“Say what you wanna say and let the words fall out, honestly, I wanna see you be brave” – Sara Barelilles, Brave