Tag Archives: Grief

In Support of Grieving Mothers

The internet is a dark and scary place these days. Everywhere you turn it’s full of divisive commentary, disheartening stories, and an endlessly unnerving string of insults lobbed back and forth between the nameless, faceless entities hiding behind their computer keyboards, typing with all the courage of someone who will never face the ramifications of their actions.

Nothing is sacred online. It’s a paradoxical reality juxtaposed against the scenes we come into contact with, in everyday life, face to face. A life that for most of us over the last six months, due to the limitations of COVID restrictions has been forced to be one lived further removed from the ever-important act of human connection.

While some find this form of isolation to be a hindrance and struggle with their mental and emotional health, others have found themselves freer than ever to use it as a shield as they perpetuate hate and spread cultural and societal dissonance all from the safety of their computer screens.

Surely, one would think there must be some things we as a whole can agree on. The belief that at heart, people are basically good tells us that in general and by majority most people wouldn’t want to harm us, speak ill of us, or degrade us in any way. It’s this belief that keeps society running as we interact with each other on even the smallest account or inconvenience; such as bumping into someone with your grocery cart or shifting over on the sidewalk to make room as you pass by another person on their daily walk. It’s these small circumstances in which we show the basic model of humanity in consideration for others’ wellbeing.

I’m not sure why the comments I read on the internet surprise me anymore. Moreover, I’m not really sure why I continue to read any internet comments at all. It’s a predictable cesspool of tirades, insults, and bizarre trajectories. I often wonder where these people come from, and who talks like that. As I mentioned before, you’d never see it face to face.

If there’s anything at all you’d assume we could collectively agree on it’s the sanctity of the depth of grief for a mother of loss. And if you did indeed assume this, unfortunately you’d be undeniably wrong. In a world where every individual happening is readily available to be seen on an endless loop it’s also often picked apart by internet vultures like nothing more than roadkill on the highway.

Earlier this week Chrissy Teigen and her husband John Legend announced they had suffered a miscarriage. Furthermore, Chrissy was far enough along in her pregnancy that she then had to deliver their son, Jack, stillborn. In a poignant and touching act of empathy for others and in commemoration of their son’s life that was never to be, they shared their most intimate photos of themselves holding him for their first and only time.

It should be noted that there are organizations devoted solely to the documentation process for these families. In the midst of their grief and pain, they meet these families in their lowest moments to make sure they capture the only photos they will ever have of their child. It’s an act of service few are called to offer, and even fewer will receive. It’s akin to sainthood to crawl down into the chasm of the grief of the bereaved parent to offer a light in the darkness of their dwelling. Sometimes, it’s a lifeline as well.

As with all parents of loss we want to know more than anything that our child’s life mattered. That it does still matter, as much as the living children of anyone else. We want so desperately to say their names, to show their photos, to share them with the world just as any proud parents would. As I sit her typing these words on what would have been my daughter’s twelfth birthday, I’m so drawn to the heart and vulnerability behind the photos Chrissy and John shared, and grateful for the illumination it provides for those who have traveled down this emotional road themselves. It’s a road that often leaves you stuck solely in the shadows.

Parents of loss are enigmatic creatures to those who stand on the outside of the circle. It’s not surprising that it is so difficult to fathom the enormity of grief when you’ve lost a child, and how it permeates every aspect of one’s life, if you yourself have not experienced it. How do you describe the array of colors of the spectrum to someone who can only see in black and white?

What is surprising is that even in the most heart rendering situation, like child loss, is that there are those who are so far removed from the ability to sympathize with even a modicum of care, concern, or sorrow that they have conversely been propelled into the realm of criticism and judgment.

I was astonished to find that on pictures of Chrissy and John holding Jack from Chrissy’s hospital bed, IVs attached, exhausted and crying, but looking at him with such love and longing that so much hate was spewed at them on the internet. Comments came flooding in.

“Doesn’t change the fact that you’re evil. God doesn’t like what you’ve done.”

“Typical behavior from celebrities. It’s all about the publicity.”

“You willingly sacrificed your unborn child.”

“What is wrong with you? Are you that desperate for media attention?”

“Um who does a photo shoot after a miscarriage?”

It was too much. I honestly couldn’t believe what I was reading. I shared with my husband what I had seen. We were both incredulous. No person who has been forced to hold their dead child in their arms would ever say these things. It’s because we know. We know the heartbreak and trauma. We know the pain and isolation. We know the feelings of longing, and loss, and failure. We know these photos are all we will ever have.

I share the same photo of my daughter over and over. She’s sitting in her adaptable chair that provided safe, comfortable support, seemingly looking right at the camera, and has on an adorably brightly colored outfit, complete with feathered headband. I love it. She looks so animated here. Her cheeks a rosy glow, and on her lips a hint of a smile. Two weeks after it was taken, she died in my arms of the terminal genetic illness she was born with. We knew our time was fleeting and now it’s the last picture we’ll ever have. If we don’t continue to say her name and share her photos, who will?

When Love Dies Slowly

1 Reply

I’m going to call her, M. I’ve known her for a long time. When recounting the fallout over the ending of her marriage, something she never expected to happen in her life, M mentioned to me that she “holds space for those who held Space for her”. I can’t tell you how much I appreciated this sentiment. In the loss of our daughter I became a different person. It all began with her terminal diagnosis. In many ways I’m softer now. I’m less rigid, more patient, but that wasn’t always the case. For a while I was angry. I was harsh. I was unyielding. I pushed people away. Luckily, through it all there were those who were strong enough and committed to loving me through it, those who gave me time and grace. Indeed, I hold space for those who held space for me. M held space for me, and in the midst of it all she was fighting her own battle. One no one around her knew she was fighting.

The themes of Grief, Love, and Life After Loss can stem form many situations, not just from physical death. M found herself in a position dealing with all three of these in a way she never thought possible. Like me, M tried to do her best to keep pushing forward in the midst of her situation without focusing on her grief, or on herself. She did everything possible to keep her carefully crafted walls in place. The walls she had built to feel secure. Slowly, but surely a crack emerged, and eventually her vulnerability began to show through. Only then did she learn the way to make it through that grief was to face it head on. Only when those walls finally came down did M find her freedom in not being contained by them any longer.

“What do I say about grief when it comes to the ending of a marriage? Lots, I say lots. There are so many layers and varied themes in my story…in anyone’s story. I’ll start with the backstory to give you some perspective, but I intend to focus on one theme throughout: grief. I come from a long legacy of lasting marriages. Both sets of my grandparents celebrated fifty years. and my own parents are coming up on that same milestone. I am proud of this legacy and had every intention of adding to it. So, divorce, when it came to my own marriage, was not in my vocabulary. It was unfathomable.

It all began when “good” Christian girl married “good” Christian boy. They had a huge, lovely wedding and went on what was to her, the most bewildering ten-day honeymoon. He barely touched her the entire time. She was baffled. Based on their belief culture, (read: they had saved themselves for marriage) she anticipated his response to being married would be sex, lots of sex, but strangely, that was not the case.

The pattern continued for the entirety of their marriage. Along with a lack of physical intimacy came a lack of emotional intimacy. He worked long hours, played online computer games, and slept more than most adults. They did not talk about feelings, he didn’t want to. They did not go on dates, he didn’t want to. If she asked for these things, or any things at all, he made it clear that he felt burdened and pressured. In disagreements she was always the one to take the blame and need to change to make things right between them. She felt like he was willing to throw her under the bus to get what he needed or just to be right. She did not feel valued by him, she did not feel like a priority in his life. They were not partners, and what friendship they had started with faded yearly. She felt she must be doing something terribly wrong. But, she kept trying to be the good little Christian wife. She would lean in, and he would pull away. She would lean in even more until she was worn out. He sometimes would give her just enough, just a trickle of love to keep her in the ring. She’d regroup and go again. She had committed herself before God, family, and friends that she would do this with everything she had. And, she was not a quitter.

Somewhere in there they got something right, and made two really amazing humans. She got busy being Mom, and that filled some voids in her life. Daily doses of affection can do amazing things for a person’s heart, so do appreciation, and fulfilled purpose. They can also help to mask other underlying issues, for a while anyway. Motherhood gave her all these things. She had hoped that her husband’s heart would be softened by the little people. Maybe it was, but there were no outward signs that it was softened towards her.

Right around the eleven-year mark, she started feeling something she had never felt before. Trapped. Desperate. She prayed a prayer to be released. Oh no! What had she done?! God certainly was NOT going to answer THAT prayer. She re-committed herself to being the best little Christian wife she possibly could be. Guess what? It did not change things for the better. He detached even more. He kept rejecting her. He gaslighted her left and right (she just didn’t know what that was yet.) By thirteen years in, she felt another new thing: Done. She felt spent, drained, hopeless. Then, ugh, she found herself dwelling on thoughts of another man, a friend. What?! This was not her, not at all. She was shocked by herself. Of course she had been hit on before, flirted with by cute coworkers, even attracted to men who crossed her path, but never once had she considered anything romantic with any of those. She was NOT okay with this. It scared her. Once she realized just what she was doing, that her marriage was in such shambles that she’d even go there, she got herself into counseling.

She told her “good” Christian husband about all of it; about the other man in her thoughts, about the counseling, about the hopelessness and the brokenness of their marriage. He was blank, initially. He listened in silence with zero emotion shown. She made demands. He needed to get into counseling, and then they would eventually go together. He got angry as if her asking for him to get counseling implied that he held some blame. She could see it in his eyes: blame and contempt. Why should he go to counseling when she was the one with the problem? But he did go.

Right away counseling uncovered the landmine that decimated her heart and explained everything simultaneously. She was married to a sex/pornography addict. His counselor identified it in his first session, and he told his wife about it that same evening. Her husband said he was flabbergasted. How did the counselor know, she wondered?! Why hadn’t she known?! She was in shock. Waves of disgust and self-loathing descended upon her unexpectedly as she would go about her life in the days just after his revelation. The ick factor was huge for her. At their first joint counseling session, the female counselor, unprompted, identified his addiction as well. This time he was angry. Why would that woman say such a thing about him?! (Side note: men who regularly partake in pornography tend to objectify and undervalue women in general. Notice the difference in his responses to being found out.) As counseling progressed, he walked a fine line of rationalizing/defending his behavior and owning up to it. He did enough to look like he was working, but not enough to actually change. He had been addicted since he was fourteen. At this point he was over forty. It was his coping mechanism. It was his release, his escape. It was the most nurtured, and deeply hidden piece of his identity. It was one that needed to protect at all cost.

She understood that no marriage was perfect. She knew one person isn’t solely responsible for a breakdown of this proportion, but by this time, all the deception and lies, all the rejection, all the detachment, all the holding his wife in contempt, they were all byproducts of his addiction. She could see, in hindsight, the signs that should have clued her in years ago. She was an unwitting enabler. When he blamed the dirty movies that would pop up in Netflix’s “recently watched” tab on a glitch in the system or the sweet teenage babysitter; that should have been a red flag. When she found Archie McPhee figurines posed in a variety of sex acts each time she and the kids would pick him up from work and he would quickly knock it off the shelf to keep her from seeing; that should have been a red flag. When he would turn down sex with his wife and then fifteen minutes later disappear into the bathroom with his phone for forty-five minutes; that should have been a red flag.

Again, she tried to be proactive, but after much counseling, studying, support grouping, separating, praying, and soul-searching, she decided she couldn’t do any more. She couldn’t fix this. She called for divorce. There was fallout…so much fallout. He blamed her and shamed her, threatened suicide, got angry, but never once took ownership of what he had done to their marriage. She was criticized by several people. She was shunned by a few. Her kids didn’t understand. Mainly, sorting through her own feelings was the hardest part. Guilt. Hope. Uncertainty. Smallness. Heartbreak. Grief.

Grief. The big one. Overarching all the feelings was her grief.
My grief.

I was grieving my marriage long before my divorce. Or, I should’ve been
grieving it, because it was dying since the get-go. I don’t know if it’s the way I was raised, the way I’m wired, or the years of being objectified and undervalued, but I did not feel worthy of my grief. I did not allow myself to grieve. I would tell myself, “Hey, look around! There are so many people who have legitimate reasons to grieve.” I just got stuck with in a horrendous marriage. That doesn’t compare to losing a loved one, or a limb. He didn’t beat me. He was never blatantly awful to me, just subtly awful. Do you see that? That’s what I do. I minimize my grief. It was my coping mechanism. It’s too hard to feel. I don’t deserve it. My life is not hard enough for me to deserve grief. All told, my life is pretty good…if you ignore a few little moments here and there:

• a cross-country move leaving my childhood friend/sister behind
• rehoming a beloved dog
• a miscarriage
• rehoming another dog
• a fourteen-year long marriage that was empty, lonely, and devoid of affection
• grappling with my husband’s porn addiction and mental illness
• a divorce
• the loss of independence that comes with a smaller income
• watching my children’s lives be turned upside down

Don’t let me lie to you like I lied to myself. Those things deserve to be grieved. Along with the loss of love, the loss of trust, the loss of one’s sexuality and sexual identity, the loss of a plan or a goal. And sometimes, hard times bring the loss of friends. That happened too, and needed to be grieved.

So, what happens when we minimize our grief? Give it a brief nod and then go on with life? What happens to that grief that doesn’t get acknowledged? That doesn’t get truly felt? I believe it eats us up in a variety of ways. I believe it can be responsible for physical ailments. I believe it can be responsible for the inability to move on with life in a healthy balanced way. I believe it skews our view of the world and of the people in it. When I minimized my grief, when I didn’t allow myself to feel what I felt it ate me up. Literally. I lost a large amount of weight quickly which, on my small frame led to other health issues. I lost sleep. I lost my temper. I lost my focus.

My faith wavered. This was a first for me. Nothing had shaken my faith
before, and it was scary. Unresolved grief can weaken the faith. I mentioned the title “good Christian” several times. It’s because I am a Christian, and I try to be good. I really try. I love Jesus and He loves me. But, questioning the state of my marriage and my beliefs about marriage certainly made me look long and hard at my faith.

I eventually came back around…to the grieving. It took time. It took coaching and it took some really great counseling. It took me learning my worth. I did that by trying to see myself through God’s eyes. It took me humbling myself to realize that I am not strong enough to avoid feeling. I couldn’t stuff it down inside myself any longer. (Side note: Isn’t it funny how pride can make us feel unworthy and overly confident at the same time? That’s another discussion, though.) It took me learning that when the wave of grief comes crashing down on me, the best thing to do is ride it. To go with it wherever it takes me. If I’m driving down the freeway when looms the icky realization that he preferred online sex with airbrushed, silicone-filled porn stars over sex with his wife, then I will pull over and scream and cry if I feel like it. It’s okay. Feel it. Feel all of it, and feel it fully. It’s not easy, but it is necessary.

Then what? Feel it all forever? For me, the waves gradually became smaller and more spread out. They still come sometimes. I acknowledge them, feel them. But, I don’t dwell. I won’t wallow. That gives the hurt too much power. I’m not sure I’ll ever be completely “over it.” My filters have certainly changed. For instance, Hugh Hefner’s recent passing was a personal trigger for me. Previous to all this, I would have hardly noticed. I certainly did not grieve him, but how he is praised for the legacy he left behind sure did a number on me. It brought a wave of pent up grief and unresolved anger crashing down on me. I still get triggered, which usually brings one of these waves. The difference is they’re manageable now. I no longer need to pull over on the side of freeways to scream-cry. And, the grief no longer fills me. Since I’ve learned to let it pass through, the space it took up has been freed to hold other things. Joy. Love. Wonder. Patience.

And where is this “good” Christian girl now? As I said, I am divorced. It was the hardest thing I’ve ever done. I wouldn’t say it’s like pulling the plug on a loved one who’s brain dead, but it shares these similarities: technically my marriage was still alive, but in all respects other than technicalities, it was dead. And, I had to let go of the hope I had held for so long that it would eventually be what God had intended marriage to be. So, now I have found happiness again. I put all the weight back on, and then some… My kids are okay. I am remarried, happily so. I am married to a man who understands grief and feelings and intimacy. He’s faced his own losses, dealt with them, been honest about them, felt all the feelings, and grew from them. He shares his struggles with me. I feel safe sharing mine with him. We verbalize that we have it as a goal to talk about whatever we need to talk about, to stay connected, to be partners, to be lovers, and to be friends, to hold each other accountable, and to keep our faith as the keystone of our marriage. It’s a very good thing. It is real and honest and ugly at times, but that’s how I believe it’s supposed to be.

A word about pornography: For me, pornography was a betrayal. It was an act of infidelity. It was secrecy and lies. It was cheating. It went against everything we “good” Christians believe and hold virtuous in our marriages. But, ultimately, it was my now ex-husband’s unwillingness to recognize this that lead to the demise of our marriage.”

For more information about how pornography use kills love, please visit fightthenewdrug.org

Running Away and Joining the Circus (and Finding Myself in the Process)

Leave a reply

I first met my dear friend, Shelly Ogden in the most unfortunate setting; the hallway of a hotel in St. Petersburg, FL after our first session of the NTSAD Annual Family Conference in 2010. We were both attending for the first time. Miss Elliott, who had infantile Tay-Sachs and Kaleb, who had infantile Sandhoff were nearly the same age, and had both recently been diagnosed. What I remember most clearly is Shelly stopping me in the hallway and telling me that she just wanted me to know that I was saying all the same things in that session that she was feeling, but couldn’t bring herself to say.

The thing about living with these rare diseases, and impending loss is how instantly, and how intimately the bonds we parents forge are. Both Miss Elliott and Kaleb died in 2012, and while Miss Elliott died in February, Kaleb died on October 3; Miss Elliott’s birthday. Shelly texted me early that morning to let me know that Kaleb must have wanted to go be with her to help her celebrate. I was gutted for her.

And the thing about outliving your medically fragile child, is that in many cases you’re suddenly, nearly completely lost. When your everyday life revolves around continuous care, medications, positioning, appointments, therapies, etc., the silence can be deafening. Constricting in your lungs like a lack of air leaving you writing in pain, desolation, and despair.

As Shelly shares below, though she couldn’t run away from the pain she was feeling, she was desperate to find a reason to be, and to find meaning, and value in her life. She was desperate to find Shelly again. And she did so, by looking in the last place she would have expected to go searching:

“I ran away and joined the circus after the death of my son. Okay, not really, but let me explain. Kaleb had infantile Sandoff disease and died just eight days after his fourth birthday. Grief can consume you, especially when you are grieving the loss of a child, if you let it, and I was determined that I was not going to let it. I never wanted my surviving child, Christopher, to feel like his life was less important, so I decided to show up for him, and continue to live for Kaleb, who didn’t get that chance. Even when I didn’t want to do it. Even when it was a struggle to make myself do it. I owe that much to the rest of my family – and also to Kaleb.

Ogden Family

After his funeral, when family went home, and Dave went back to work I had nothing. I felt lost. I felt like I was wandering without a purpose. I’d go window shopping to kill time but even that was too hard. I’d see a mom walking with her son and I’d literally have to run out of the store or risk breaking down in front of everyone. I then found myself making daily trips to the cemetery because that is where I felt close to him, and because I couldn’t stand being inside our empty house. On my way back from one of those trips, I stopped into a women’s only dance studio and bought a membership. I decided it was time to start taking care of myself. I thought I’d start off easy and attend an aerial yoga class, but when I got there, the instructor warned me that what I was about to take was an aerial silks class. I was already there, and I didn’t know the difference, so I decided I’d stay.

Little did I know what I was in for. I am a retired law enforcement officer, and I’ve been through some tough training but this class was the most physically demanding Shelly Aerial thing I’d ever done. First and foremost, I am afraid of heights which was a challenge. The silks physically hurt my feet, and my forearms, hands, and biceps felt like they were one fire. My entire body was screaming, but for one hour I found that I could focus on something other than the pain in my heart, and that was an amazing feeling. One thing I have discovered, as I dove head first into the world of circus arts, is that the more I learn to “fly” the closer I feel to Kaleb, I no longer feel the need to visit the cemetery every day.

The friends I have made in the aerial world are some of the most supportive and caring people I have ever met, and they’ve changed the way I look at a lot of things. My first instructor, Jessie, played such an instrumental part in my healing process. There are countless times when she would sit with me and just let me cry on her shoulder, which was very therapeutic. She’d encourage me to join class when I was ready during those difficult days where I felt like I was constantly on the verge of tears, and I always felt better out of class.

This past August, I asked my current instructor, Lauriel, to choreograph a piece for me to Danny Gokey’s “Tell Your Heart to Beat Again”. I told her I wasn’t the kind of person who could perform in front of an audience, but I wanted to record this piece and post it on social media in honor of Kaleb’s angelversary. I explained that this anniversary would mean that Kaleb would be gone, longer than he lived. What she came up with was even better than what I expected, and was packed with so much emotion. I was so proud of what she had done and when I finally got it recorded we sat together hugging each other and crying. The release of having finished it, was more than just finally recording the piece, but the emotion of the song and the action that was put into the routine all hit me at the end.

I have always been the quiet observer, the wall flower if you will. I like to see everything going on around me, but I prefer to stay out of the lime light, until recently Shelly Circus when Lauriel talked me into performing. I stepped out of my comfort zone and become a performer equipped with identification that titled me “Talent”. So, for one night, I joined the circus, and the spotlight was on me. It was oddly both terrifying and exhilarating at the same time. I was bolstered by the fact that my oldest son and husband were in the audience to support me and I know Kaleb was in the air right next to me.

I’ve decided to continue to live even when my world has been turned upside down. It was a choice I had to make, and it didn’t come easy. Some days the grief is crippling, but I think about the life Kaleb had to live, one that left him paralyzed, in silence, tormented by seizures, unable to enjoy the taste of food, and he reminds me, if he can do that, I can do this – I can live fully and honor him. I have discovered that in order to navigate through life after the loss of a child you have to find your “thing,” your passion. My faith gives me hope, my family gives me a reason, and my aerial world gives me wings.’

“There is freedom waiting for you,
On the breezes of the sky,
And you ask, ‘What if I fall?’
Oh but my darling, what if you fly?”
Erin Hanson

Onward, Soldier. Onward In Love.

Leave a reply

The dark does not my steps impede
Your memory, now the guiding light through my crucible
My drive, steeled by the absence of your beating heart
to seek out a world of love and hope
They must connect;
future born of past
in order to become new
To rise after the fall
To toil evermore
Growing
Searching
Reaping for all mankind

A Five Year Study in Grief

Leave a reply

This last Friday marked five years since our daughter died. Five years. Five years? Sometimes it’s so close to the forefront of my mind that it overtakes me. The reality of it weighs me down and my mind spins out of control. Other times I can’t put my finger on it being factual at all. It’s surreal. It’s visceral. It’s confusing, and overwhelming, and still unbelievable.

Each anniversary of her death seems to strike me in different ways. I never know how I’ll feel as the date approaches, but usually I’m OK. This year I wasn’t. I’ve come to realize the physical toll grief takes on me. And every year at this time I get sick. Headaches, fever, sore throat, sometimes vomiting. My symptoms seem to run the gamete, but no matter what they may be their cause seems to be psychosomatic.

Realizing this feels like a big step in helping myself mitigate these factors, or rather it should, but I’m not always able to mind-over-matter my way through them. Sometimes, usually in the week leading up to February 3rd I’m susceptible to them despite my best efforts to stave them off.

This year I cried. A lot. I felt an overwhelming sense of impending dread. I felt weighed down and unable to perform the most mundane of tasks that day. My mind swirled. It was scattered. I paced in circles throughout the house without reason. I lost my breath and suffered a panic attack. I prayed. A lot. I just couldn’t seem to be still or calm.

I granted myself these moments, moments I usually deny myself, to let it out, to feel my pain and sorrow. To be human.

It’s been so long since she’s been gone, much longer than she ever was here, that sometimes it’s hard to remember what our life with her was like. The fact that our life with her was all-consuming doesn’t change that fact. The fact that our life looks so drastically different now only makes it harder to connect to what it once was, in my mind.

Loren left for work, but not before asking if I was ok. Unable to put a brave face on this morning, “Just sad,” I told him. “I know,” he responded. He told me he loved me, kissed my forehead, and recounted that he was so in tune with my stress that he can always tell if something’s off.

An hour later I called him for no reason other than to hear his voice. I needed his comfort. He assured me he could come home if I wanted or needed him to. Gathering myself I declined his offer. I was determined to get through this day without further disrupting it for anyone else.

I forced myself to shower. It took a long time to go through the motions. I dressed, and eventually went outside to once again shovel the drive as it had now been snowing heavily all morning. It needed to be done, regardless of what day is was. The weather didn’t care.

In the midst of my shoveling effort my brother pulled up. He stepped out of his truck and presented me with a bouquet of pink and purple carnations.

I cried again.

Skylar texted and asked me to pick her up after school and go to the orthodontist because the wire on her braces had shifted and was sticking into her cheek.

Life keeps moving forward.

As she opened the door and got in the car after school she too asked if I was ok. Crap, even she can see it on my face, I thought. I’m normally much more adept at masking it. “I’m ok,” I lied. I’m sure she didn’t believe me. I struggle with wanting to tell her what day it is for her to share in remembering and honoring her sister, and vice versa to shield her from feeling the sadness I feel on this day if she doesn’t already realize the significance of the date on her own. I didn’t mention it further.

At the orthodontist’s office I waited while she went back into the ortho chair. I was the only one in the waiting room at this time, except the receptionist at the front desk. Once again, preoccupied with my own issues and becoming overwhelmingly emotional I began to cry. Noticing my obvious breakdown the receptionist came over to ask if I was ok. I lied again that I was fine, but it was a pretty poor performance so she leaned in to give me a hug. I apologized. I wasn’t necessarily sorry for making someone else uncomfortable, just for the fact that I was causing a scene and let my emotions get the best of me in public, which I am usually able to contain. I told her today was the anniversary of my youngest daughter’s death. She began crying as well and told me that her son died in June.

And there it was. I don’t have the market cornered on grief, even though I had been wallowing in my own loss all day. At least I knew she understood and didn’t think I was crazy.

Skylar came out. We finished up the appointment, and then the receptionist told her they were having a game that day. She told Skylar she could win a prize if she threw the beanbags through the hole in the board she was holding. Two out of three in and Skylar won a pair of movie tickets and a t-shirt. She was ecstatic.

A friend texted with her remembrances of Miss Elliott and commended me on always carrying myself with such grace in light of my loss.

Ha. Not today.

It wasn’t until later that I realized I hadn’t seen the staff at the ortho office offer this game to any of the other patients as they left the office that day. The receptionist had just been exceptionally kind due to my emotional distress. It reminded me that it’s ok to be human. It’s ok to show my feelings of sadness and grief. As uncomfortable as it may make me, sometimes it’s necessary to let it out.

By the time we got home my eyes were blurry and stinging so badly from all of my crying that out came my contacts and I wore my glasses for the rest of the night.

Walking in the door my husband tells my I’m beautiful. I laugh at his seemingly horrible judgement, but he means it. He truly believes it. Even in that moment with my red, puffy, makeup smeared eyes. He loves me fully; in spite of my flaws, mistakes, and the ways I’ve let him down over the years. It reminds me that even through the ups and downs, even in the midst of grief, being here at home with the two people who mean more to me than anyone else in the entire world, the only two other people who can share in this level of grief, as intimately as I can, is all I need to get by.

Breaking with Tradition

Leave a reply

Four Christmases. That’s how many we’ve celebrated without our sweet Miss Elliott at home in our arms. She remains now, only in our hearts and memories. A life remembered becomes a culmination of ever changing milestones from the moment your loved one passed.

In church yesterday our class leader asked the group about their sense of time, and how they measure it. Nearly everyone gave examples of moments like x amount of time since graduation, x amount of time since we were married, x amount of time since my children were born, etc. I remained silent, but in my head I whispered to myself; four years and ten months since our daughter died.

I whispered this in my heard for several reasons. One, the more time that goes by people seem to know your answers to questions like these before you speak them. They already know you’re the lady whose daughter died. Furthermore, they don’t like to be reminded about it. Second, it’s also so solemn that I wind up not wanting to bring down the group, so-to-speak. And third, I worry that when I speak these things aloud people will think I’m looking for sympathy, which I am not. You learn over time, that outsiders don’t understand your loss or grief and you tend to keep it closer and closer to heart.

Our society does not want to grief to be something brought out of the shadows that they have to face. They’re much more comfortable knowing, somewhere in the recesses of their mind that although it does exist, for others, they do not what to come any closer to its unpleasantness.

Milestones of any kind for those who’ve experienced a loss can be overwhelmingly emotional. The holidays tend to amplify these for many people. We developed our own new traditions to incorporate Miss Elliott’s memory into our holiday routines. Things that made us feel happy and were right for our family. A way to honor the fact that we are still very much a family of four, even if Miss Elliott isn’t physically present with us.

One of these new traditions was to set up our Miss Elliott Tree. A little white tree, lit with white lights, covered in pink and purple ornaments. Miss Elliott’s favorite color was pink. Thought she would eventually become blind, lose her mental and cognitive abilities, and never spoke a single word due to being born with Tay-Sachs disease we knew it was her favorite because her older sister, Skylar, five or six years old at the time assigned it to her.

For the last four Christmases we’ve made a point to purchase new ornaments for the tree each year, and Skylar has even taken to setting it up in her room. We would carefully unwrap each of these special decorations and hang them thinking about how they represented Miss Elliott and her memory.

This year, after Thanksgiving we finished up our traditional tree in the living room, a tree trimmed entirely by Skylar for the first time this year.

“Let me do it. I think I know where you want the ornaments and how you like them,” she told me.

Now in seventh grade and on the verge of teenagehood Skylar has watched me carefully place each of the perfectly color coordinated and themed ornaments over the years and wanted to try her hand – on her own. I agreed, and she did so with perfect execution. It’s wondrous watching her grow and evolve into her own autonomous being. A touch of myself, a touch of Loren, and wholly her own person.

“What about the Miss Elliott tree,” she asked?

“You know, I just wasn’t going to put it up this year,” told her.

“Oh. Are you just done with it, then?”

“I think I am. How do you feel about that?”

“I feel done with it too.”

We told Loren about our decision, and he agreed. That was that. None of us felt the need or desire to set up the tree any longer. It had served its purpose for us during those first few difficult years after losing Miss Elliott. I don’t really see it as any sort of advancement through grief with this fifth impending Christmas since her passing. I don’t like that kind of terminology because it denotes that one day we will stop grieving her loss. As if grief over losing your child were something to move past. That there is some sort of end point to it. Rather, like most things our ideas and feelings about it have changed over time, and continue to evolve year after year.

Miss Elliott still holds the same place within our hearts that she has since she was conceived. And her memory is still cradled just as softly there as when she passed. We honor her life in so many ways, but we no longer felt beholden to this tradition to do so. The little white tree decked out in pink and purple isn’t something I needed to utilize in order to celebrate anymore, and that’s ok. I still continue to hang four stockings over the fireplace. To me, it’s a reminder that we are, and always will be a family of four. I cherish this thought and it makes me happy when I look up and see the four of them hanging there together. In a very small way, it gives me a sense of peace.

If you are grieving a loss this year I hope that wherever you are on your journey you find traditions that are right for you and your family. Ones that help you have a little peace in your heart and add joy to your holidays. Whether that mean keeping up time honored traditions, putting them to rest, or discovering new ones altogether; there are no wrong ways to celebrate your loved one.

Grief Doesn’t Die

1 Reply

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.

The Remnants of a Life

Leave a reply

I bought a desk this weekend. I had been needing one for some time. I work from home, and in addition to that, it would also be great to have a place carved out just for me to do my writing. A place where I can sit, in solitude and think or clear my mind. Focus on the words in my heart and put them on paper, or the internet, as the case may be. A creative space sectioned off from the rest of our home; like the sofa downstairs in front of the TV where I currently sit, feet up on the coffee table, laptop on my legs in our family room.

It’s not an office, per se, it’s also the guest room. And until last year it wasn’t even that. It was, in what turned out to be nothing more that vain hopefulness, (if such a thing exists) a pip-dream perhaps, our son’s room. A boy’s bulldog-brown painted twin bed, and matching dresser adorned the space where dinosaurs covered the bedding, curtains, and walls. After nearly three years of pouring out our heart and soul, not to mention time and money, into our pursuit of adoption it was time to face the fact that no son was to be called our own.

We simply couldn’t expend any more time, emotion, or energy to what had not only been a fruitless, but also psychiatrically draining endeavor. And I couldn’t look at that empty room a moment more. Out it all went, the day I decided to make it so, and a guest room, with a queen sized bed, night stand, and new décor replaced it immediately.

This weekend, I finally added a desk. And in doing so was able to clean out the old filing cabinet that now sat in the guestroom’s closet. A long overdue exercise in organization came about today as I went through the paperwork inside of it.

And there, tucked away inside the drawers were the remnants of a life. Mountains of paperwork I haven’t looked at in years. The new family resource packet from the National Tay-Sachs and Allied Diseases Association, the organization I now work for, that I realized only today, during my daughter’s illness, during her life I never even opened or looked at at all. Expandable file folders filled with medical information. Assessments, intake evaluations, and numerous other documentation relating to Miss Elliott’s diagnosis of Tay-Sachs disease, and care afterward. I found forms for orthotics, medically necessary seating and mobility information, recommendations for such, medication lists, notes from doctor visits, appointment cards, insurance statements, bill after bill for services rendered; neurology, genetics, feeding therapy, physical therapy, occupational therapy…and on and on…

Paperwork

Why did I still have all of this? Why had we brought it with us when we moved? Why hadn’t I gone through it until now?

I guess I just hadn’t tackled it yet. Little by little. Not that long ago this was our life. These regimens were our routine; our known normal. It’s odd to realize how little our lives now resemble the one we were so accustomed to just a few short years ago. And it’s strange how these things, that all add up to medical fragility, immense care, time, and love, are now utterly meaningless. One thing you hear from families of medically fragile children is how that when their child is alive these things come to embody who they are, and once they are gone, they’re just a symbol of the disease, not the child. Nothing but a stack of papers exists, in physical form, as the remnants of our daughter’s life here on earth. And day by day the reminders of their being gone, the lack of a physical presence creeps in and take over our lives. Like the desk, or the guestroom, which would have been her room had she still been here with us.

But, out they went, that stacks of papers. We don’t need those remnants to be able to remember her, like some shrine to her physical being. She’s not there inside of those items anywhere. They may be tangible, but they’re meaningless. She exists in our hearts.

Give Yourself A Medal

1 Reply

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 Life, As Told In Numbers

Leave a reply

Numbers have a way of driving our lives. We use them in every manner possible to evaluate ourselves, or even our worth, sometimes literally. One’s age, bank account, weight, the year of their car, square footage of their home, hours spent working in a day, children’s grades, and so on and so forth can lead to their feelings of personal value, or lack thereof, and even inadequacy. While some numbers bolster the feelings of praise or satisfaction, others tare them down with relentless fury.

Yesterday was my thirteenth anniversary. I’ve been married for thirteen years, but I met my husband sixteen years ago. I am thirty-two; half my life I’ve spent with him. Out of curiosity and nostalgia I tried on my wedding dress to see if it fit. It didn’t. I couldn’t get it zipped. There’s obviously only one real explanation here: clearly my ribcage has expanded (haha).

For your reference, here I am in my wedding dress in 2003, and then again not
fitting into it yesterday. Like I said…my ribcage must have expanded, but I digress…

So, I felt badly, of course. A stupid thing to fixate on, but don’t we tend to do this much more often then we should? I immediately took the dress off, mustered my best pose and took a selfie in the mirror. I sent it to my husband hoping to hear I was still pretty (and young, and slim, etc… [Which of course he said I was, but to be fair it actually was a good picture and magically made me look like I had a six pack, which in real life I certainly do not.]) But why was I punishing myself? So I’m not the same size I was when I was nineteen. I’m not that nineteen year old girl in any way. I’m not sure I resemble her at all. Why would she have anything to do with how I feel about myself? Why let a number sewn into a dress (or a pair of jeans) I’ll never wear again hold any of my own worth over my head?

I am so much more than a number on a scale. I have plenty of other numbers that matter a lot more than that one does.

How about that thirteen. That’s a good long time to be married, especially for a thirty-two year old. Two. That’s how many children I’ve birthed. Zero. The number of epidurals I’ve had. Eleven. Our oldest daughter’s age today. Three. The number of years our youngest daughter lived. Four. The number of years since her death.

A million. The number of times a day I think about her.

Forever. The length of time this grief will stay with me.

To be fair, there are plenty of other numbers I have no idea what their totals are. Numbers that I’m not sure how to incorporate into my self-evaluations, but numbers whom I know will always be infinitely more important than the ones on the scale. For instance, how many times I administered seizure medications, though twice a day for nearly three years is somewhere around two thousand. How many times I bathed her. How many diapers I changed. How many times I told her I loved her. How many times I’ve cried since she’s been gone. How often I’ve tried to conceptualize what she would have been like if Tay-Sachs disease hadn’t taken her life. And how many times I’ve failed to do so. Because I can’t. Try as I might, I have no idea who she would have been. She didn’t get the chance. The chance to develop her own personality, thoughts, feelings, perceptions, ideas, convictions. One tiny missing enzyme in her body took it all away from her.

I would love to change my numbers. Who wouldn’t? I’d be richer, skinnier, with a newer car, and a second home. I’d have a living child who was seven and not just the memory of a perpetual three year old for all of eternity. I would have stopped time, at the very least to live in the moment I held her, forever.

Time. Some of the cruelest numbers we encounter circle around this concept. To keep moving forward, to keep trudging through this life, we can’t fall victim to the folly of willing it to change. It will continuing moving along its own path no matter what we feel we have to say about the matter. No matter how many times I try to count the ever growing number of tears I’ve shed, and to organize them into an account of love through grief based on the time of their occurrence.

But all of those numbers, the good and bad, plotted across a graph do add up to begin to eventually form the description of who I am. They’re all part of what makes me, me. No one’s graph has a trajectory consistently moving at a forty five degree angle straight to the top. We all have ups and downs. They shape our character. If we let them, they mold us into three dimensional beings who have the ability to love, understand, forgive, relate, sympathize, and empathize. People who, because of their own plights are sensitive to those of others. People who can lend a hand, or shoulder, or ear when needed. Tried through fire. Sharpened with iron. Bent and broken. Clustered masses of infinite combinations painting the picture of humanity.

Each of us has a unique story to tell, and our numbers help us do just that.