Tag Archives: Support

What it Feels Like for a Woman

Key the whining and complaining.  The ugly-crying and drowning of sorrows in a pint of mint chocolate chip.  The “Man-Hating”, and ultra-feministic points of view.  You know, or whatever stereotypical depiction you may have envisioned in your head.

While the following post doesn’t necessarily follow the mission of this blog, which is to put forth everyday experiences and information about “Grief, Love and Life After Loss”, it is my blog so I’ll indulge my creative whim and also attempt an (admittedly weak) tie in, but as the mother of daughters, it’s a form of grief, and  very real fear in life I have for her.  Yes, her, not them.  If you’ve read any of this blog before you’ll know I have one living daughter, and one who has died.  If you’re a new reader, I encourage you to read more about our Miss Elliott, whose beautiful but ultimately too short life was the inspiration for this work, as well as her book: Three Short Years

As women, we’re barraged by shoulds constantly.  A woman should be ____________.  You decide.  But don’t worry, if you can’t (and really, why should you worry your pretty little head over it?) someone else will inevitably fill in the blank for you .  We’re told to smile more, but not too much.  Be strong, but gentle.  Speak up, but don’t be loud.  A woman should be all thing sugar and spice, and everything nice.  A woman should Lean In, but not make a habit of wearing too many pantsuits.  A woman should…oh geez, even I’m getting tired of reading this…and I could go on and on.

Yesterday on a call for work I was speaking to a grief counselor local to the area we’ll soon be hosting our next conference and asking her about helping to facilitate some of the sessions we hold for grieving parents.  One of her quotes, in particular stuck with me:

“Don’t should on yourself.”

Yes!

So here’s the point I’m getting at:  don’t take a snippet of a woman, her attire, her expression, her anything, and tell her who she is or who she has to be.  You don’t get to decide.  And what makes you think that who you view her as is a relevant factor to her, anyway?  And women, listen up:  none of that needs to determine your self-worth.  YOU decide…that’s why it’s called SELF worth.

I was frustrated after what was just an otherwise boring trip to the grocery store, when my husband called and asked how my day was going.

“Just another incident that reiterates how difficult it is to be a woman in our society today,” I told him.  Please let me clarify.  I know that in the United States we (all of us) are afforded many basic rights and needs that are often denied to others.  I have no political agenda in this post, and this is not a global issues blog.  I’m just opening up from a human perspective of very small and ultimately inconsequential happenstance in my own life.

While rounding a blind corner with my cart I nearly collided with another patron.  It was neither of our faults, but being a generally courteous person and upholding a very low level of human decency I said, “Oh, I’m sorry, excuse me!” and smiled.

This must have been where I went wrong, but women smile sometimes.  It’s not an invitation for anything.  It doesn’t mean we want you.  It’s just a pleasantry.

“You don’t need to apologize for anything,” the man said.  “And besides, you’re really pretty.  Do you know that?”

“Oh, well thanks,” I sing-song cooed over my shoulder as I tried to keep going.

“No, you really are.  And I know how long it takes to do all that hair and makeup stuff because I watch Amy Schumer.  Do you know who she is? She’s a little crass sometimes, but she tells us guys how it is and how much work it takes so I try to work it in to my compliments and I just wanted you to know that.”

WHAT?  I think to myself, feeling pretty creeped out.

“Um ok, well thanks again…” I spat out quickly and I was practically wheels up rolling away as fast as I could (before he said something else) while he just stood there watching me leave, wondering if this creepy dude was about to follow me out to my car.

I was wearing my super chic ripped jeans and a striped tee, by the way, so you know, all that effort and all…

Be friendly, but not too friendly.  Smile, but don’t over do it.  You don’t want to be a bitch, (which is what someone will inevitably call you if you don’t conform to their momentary standards), the voices swirl.

All these things society continually puts on women, and here I was reiterating to my husband how due to nothing more than probability in genetics he will never have to know what encounters like these make a woman feel like. He won’t have the onslaught of unwanted and unwelcomed interactions that most women contend with, often daily.

Last week my best friend went to her regular tanning salon.  She checked in and waited for the bed to become available.  A man at the desk said to the clerk, “So you’re gonna give up my bed to her?”  “Oh, I’m sorry.  We’re you waiting for that bed?  You can go ahead of me.” she replied.  “Nah, I just thought maybe we could share it.” he retorted, and smiled, obviously proud of himself for such a witty come on.

“And that’s how daddy and I met,” #saidnowomanever (Google this hashtag if you’re not familiar with it).

boxing-woman

“Uh, no thanks.” she told him.  Suddenly he wasn’t smiley and suave anymore, but instantly became sullen and rude.

Though they may seem anecdotal, stories like these are an ongoing issue for many woman.  Interactions that should be of no consequence whatsoever become a source of stress and discomfort and unfairly put women on the defensive.  They cause women to question their everyday actions such as how they do their hair or makeup, what they wear, where they go, who they interact with, and how, etc.  All of these factors, amongst many, many others contribute to what it feels like to be a woman in society today, and perpetuate the victim blaming mentality.

Without going completely off topic on another tangent, this reminds me of the best anti-rape article I ever read.  It explained that when we tell our young men and boys the reason not to rape a woman is to think of her as your sister, mother, daughter, etc. all we’re doing is reaffirming who she is in relation to a man.  The real reason to not rape a woman doesn’t have anything to do with who she is to them, it’s because she’s a human being, all on her own.

So?  Don’t should on yourselves, ladies.  Don’t apologize for your existence.  Chauvinism may be alive and well, but in the immortal words of Meghan Trainor:

“…listen up…lick your lips and swing your hips, girl all you gotta say is…”

NO!

Then turn around and walk away, tall.

Help: On the Horizon vs. At your Door

It had been a particularly trying day.  Disastrous, really.  I had come home from grocery shopping in the middle of winter to find frozen pipes that had busted and thawed, and water was now gushing from the ceiling in my laundry room onto the wood floors below.

The valve to shut the water off to the whole house had frozen in place outside in the ground.  After struggling unsuccessfully to wrench it free, I deemed it a lost cause and ran to the garage where I dumped the Rubbermaid trashcan full of garden tools onto the floor and frantically ran to place it inside the house to catch the water pouring from above.  I opened the back door and began sweeping the water covering the floor outside.

Then I called my husband at work and screamed through frustration and tears into the phone; “GET HOME NOW”.

Taking to social media later in the day to lament and seek out commiseration, I suppose, I quickly had a message from my friend, Halcyon.

“Can I bring you dinner?” she wrote.

My immediate instinct was to respond with a no thank you, a how thoughtful, or that I appreciated it, but we’ll be fine.  Then for some reason, I just accepted.  I did want that dinner.  It would help. It would be one less thing I would have to worry about in the midst of such a terrible day, and it felt like a win.

We were no strangers to acts of kindness at this point in our lives.  Our daughter’s terminal illness and death were humbling in ways we never even considered needing to be humbled before her life, but the general idea of utilizing the village before you seems somehow, almost un-American.  As if accepting help is an admission of our inability to pull ourselves up be our own bootstraps, rather than an act of love and concern for other humans that makes the world go ’round.

She brought warm soup and fresh baked soft bread from Panera (one of my favorite places).  It was delicious.  And so appreciated.  The real gift she gave, however; was not the meal itself, and not even the act of caring, but the outreach she exercised to begin with.  She didn’t let me know she could help if I needed, she didn’t even ask what she could do for us.  She took action, and offered something specific, something concrete.  She then placed it in a time frame and set to work on following through.

When facing life’s challenges, simply wanting to help or letting someone know you’re there to help is often not enough.  Don’t make vague statements or plans that don’t amount to anything.  While the thought is appreciated, the action always speaks louder.

When someone is struggling with a difficult situation, the burden of need is already on their shoulders.  Don’t add to their overflowing plate by asking them to tell you how you can help.  Often, it’s just too much for someone to even consider tying to navigate the map of help-need to be able to organize or convey those needs to you.

Perusing social medial recently I found a message from a friend, posted on her personal page, as a cry for help.  She posted the following picture with the message, “Definitely me sometimes”.

rsz_quote_2 (1)

What followed, to be honest, as someone having been in need myself annoyed the crap out of me. The response, even though positive, genuine, and seemingly in an effort to be supportive, just wasn’t.

rsz_1quote_message

Simply telling someone you’re there for them simply doesn’t do anything.  If you’re going to talk the talk, you’d better be willing to walk the walk and actually be there. Don’t wait for a friend to ask for help.  They are already overwhelmed, so they most likely never will.  Just take the initiative and go out of your way to be there without waiting to be asked.

I specifically remember the phrase “we support you” being uttered to us repeatedly when Miss Elliott was alive.  How?  I always wondered, because with certain people those words seemed to be all there ever was.  Nothing to back them up, no outreach, no follow through.

What was interesting to me about the respondent’s message to “call me” was that someone else, yet another friend, liked the comment, in what I can only assume was a show of solidarity, or a me too response.  But even when my friend reiterated that she always needs someone, and implores her to please just come over, the respondent again defaults to asking the person in need to call her.

Don’t do this.  It’s painfully obvious that this person should have picked up the phone at that very moment.  Should have gotten in her car and driven over.  She should have done anything worthy of being called helpful, but what happened here instead was that this person did, literally the least she possibly could have done, and probably mentally checked off a box in her mind that allowed her to continue in her thinking that she reached out, did good, and helped.  She didn’t.

Sometimes in our attempts at care toward others we place them into our box, our comfort, zone, rather than stepping outside of that zone ourselves to look deeper into what they really need.  I think we usually just tend to look for what may be easiest for us to offer.  We fail, so often at truly going that extra mile.

This interaction would have left me feeling even more alone.

There are many things that everyone needs, so make a list of what would help you because chances are, it would help someone else too.  Some simple suggestions of ways to help that I like to give are:

  1. Mow the lawn
  2. Wash and fold the laundry
  3. Clean the house
  4. Let them take a nap or get a hot shower
  5. Bring dinner
  6. Take the kids somewhere for a bit (a movie, to the park, etc.)
  7. Bring groceries
  8. Run errands
  9. Help coordinate appointments
  10. Go to their house to visit
  11. Help them have a night out aloneand most of all
  12. Just listen without trying to fix their problems

Grief Doesn’t Die

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

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

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

“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

Soul Pic

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 

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