Category 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?

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

Adorned In Grief

Leave a reply

What was odd is that it wasn’t chilly. It was a February morning in Seattle and I remember not being cold. All the more odd because I’m always cold. Always. I can’t remember if it was sunny, but I know it wasn’t raining. Again, odd for Seattle on a February morning. February 12, 2012, to be exact.

I was wearing a black cotton spaghetti strap, v-neck dress with a satin lining that flowed over my knees. I’m not sure where I got it, because it was already in my closet and I hadn’t worn it often. It was a summer dress. I wore a black shawl over my shoulders and black patent leather heels. No pantyhose. Does convention still call for them? I was young enough not to care. I put on a black 1920s style cloche hat to hide my face. I had gotten it on vacation a couple of years earlier. I didn’t want to look at anyone and I didn’t want them looking at me. I wanted to shrink into that hat completely.

I can’t remember most of it, the funeral. I do remember someone telling me it was beautiful. I wanted to punch them in the face. I remember someone else telling my they had never seen a coffin so small. Again, mental face punch. Then, someone told me I was beautiful. Actually several people did. But someone told me it was the most beautiful I had ever looked. Really? At my daughter’s funeral? Jerk.

I don’t even remember who it was. I just remember thinking that maybe I was little more beautiful at my senior prom…or my wedding…or basically any other day than this.

They just wanted to be nice. I know they did. I don’t blame them. I don’t even count it as ignorant or outplaced. I was simply being swallowed alive in that moment by the death and subsequent burial of my daughter. All-in-all, I think I’ve held it together pretty well.

There were so many people there. I felt their eyes all over me and it burned. I didn’t look around. I will never know who actually was there, or how many people in total, but I know the cemetery was full.

Our preacher said some words. I think my brother lead a prayer. I said nothing. I watched as they lowered my daughter’s body into the hole previously dug for her. I wasn’t sure what to do. Was that it? Was it over? What did I do now? Just leave? How? How could I just go? Once I left, that was it. Never a reason to return. The last that remained of her physical being was gone from me forever. How could it be? How, after the years of caring for her day in and out, providing for her every need twenty-four hours a day, could I just go?

What mother leaves her baby cold in the ground and just walks away?

One face stood out to me. A friend, who was a light in the darkness of my day. She didn’t speak. She simply walked up to me and her searching eyes said everything there were no words for as she pressed her lips together and stared into my soul. I was grateful for her understanding, and though our eyes met, I was silent in my reply.

I don’t have the dress anymore. I don’t know where it went. Did I give it away to Goodwill? I think I did, but I don’t remember doing so. I knew I would never wear it again. The shoes and shawl are both gone. I will never wear the hat again, either, but it I still have. I see it in the back of my closet, a grim reminder of the one and only time it adorned my head. I don’t take it out. Sometimes it topples over when I’m digging for a pair of shorts or an old purse. And I remember.

Headstone

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.

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.

Taking Care of Yourself, and Taking A Step Back from Grief

Leave a reply

After the earth-shattering diagnosis of our youngest daughter’s terminal illness that was Tay-Sachs disease I immediately became an advocate, in my own right for awareness, education, and prevention.

I took to the new community of affected families that was there to welcome me in with vigor. Families from all races, religions, and walks of life banded together in this group because of the one thing they had in common, the one thing that trumped everything else they didn’t.

It’s desperately devastating. A club to which no one wants to belong. But at least we have each other. It may sound horribly cliché, and while it is, it’s also true. There is comfort in know you’re not alone. Solidarity in our plight, as it may be.

Technology has been a godsend against feelings of isolation. With most of us across the United States not having any local contact with another family like ours (for us, Miss Elliott was the only child with Tay-Sachs in our state) the internet, specifically Facebook is where we turn to communicate with others.

On our private group page families can post questions, most that their doctors can’t even answer, and expect to have a barrage of responses, usually within minutes, from the experts themselves; other parents living this same life. Conversations usually revolve around day-to-day care, medication dosages, insurance issues, and tips for comfort.

I dove in full force. I too was suddenly one of those experts and had information to offer new parents as they joined our group. In some ways, I relished the offering of my experiences. It helped make them meaningful, exponentially so. I felt altruistic in my efforts, shifting my focus from inward to outward, which I suppose was also helpful to numbing the pain of the reality of our life. I felt it my duty to help other parents, in any way possible. We were a small, but mighty group who rallied around each other. That sense of community has pulled me through some very dark times, and I would do what I could over the next several years to be there for those who needed someone to talk to, to listen to them, to be a shoulder to cry on.

It’s been seven years since Miss Elliott was diagnosed with Tay-Sachs, and just over four years since her death, and now I find that I’m tired. I’m tired of speaking up whenever a question is asked. I’m tired of offering advice. I’m tired of being pulled into the throngs of the high-level emotions of newly diagnosed parents. And I also see those parents, perhaps once new to the group themselves are now the experts. The ones quick to answer a question or supply some advice, and I know, my voice isn’t required in repetition. And that’s ok.

I see questions posed, and as I find that I can’t muster up the emotional energy to do so I think to myself someone else will answer this anyway. It’s not that I don’t want to help anymore, I do, I just need to channel my energy in a different way. To not live in the trenches, as that’s no life at all. I wince at first, in acknowledgment of this feeling, but I know it’s not unique to me. It’s a pattern I see repeated by so many families who have lost their children over the years; taking a step back with less involvement, less communication, less participation. And I think it’s because at a certain point it becomes so mentally and emotionally draining one must step away in order to keep some semblance of sanity, or perhaps to regain it after their child’s passing. Especially to continue on in the world outside our sheltered group.

Two years ago I accepted a position with the National Tay-Sachs and Allied Diseases Association as their Conference Coordinator. It is absolutely my passion. It allows me a way to help every family in the organization. A focus and drive for my energy and for my desire to honor Miss Elliott’s life in a broader sense that keeps me involved, but not on a level that feels detrimental to my own mental wellbeing. As a parent of an affected child first, it’s given me a unique outlook that I hope helps to serve our families in a way only someone in my position could.

I’ll never stop advocating for awareness of Tay-Sachs disease, but finding a way that allows me to carry on in life without being weighed down has been essential to my ability to carry on. Everyone must find the right fit for themselves, but recognizing what works for you and, perhaps more importantly what doesn’t is vitally important for your own survival through the ongoing stages of grief one lives with, forever, after the loss of their child.

Our family photo from the Annual Family Conference in Orlando, FL, April , 2016

To learn ore about Miss Elliott and her life with Tay-Sachs disease, get your copy of Three Short Years here.

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 Brief History of Grief

2 Replies

“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.

Grief. What’s Next?

Leave a reply

When I met Noah Mathew Leos last April at the NTSAD Annual Family Conference in Washington, D.C. his presence was magnetic. I was captivated by this beautiful child. His light shone so brightly you couldn’t look away. His mother and father like so many other parents were, both proud, yet humbled to be in that place with their son. Surrounded by those with children like theirs, those who understood their life. It was their first time attending this conference, and I could tell instantly; they were home.

They looked so much like many of the families I’ve seen over the years. Families like mine. Their son Tony, was so mature, wise beyond his years, and respectful of everyone. Little Marina dazzled everyone in her presence with her immense smile and constant dancing about.

These families share an unspeakable bond, and no words need to pass between us to communicate with each other. We just know. And one by one, we all must pass through the threshold of loss beyond the daily care routines and constant what ifs into the realm of loss and grief. When suddenly our know world is sent spiraling into oblivion, we often wonder, what’s next?

Zuraya, Noah’s mother beautifully and eloquently captures the heart of so many mothers of loss. Our days are upside down. Our lives are inside out. Here she gives a small window into her world since Noah’s passing and sheds light on some of the lesser seen personal struggles we endure.

Leos Family

“Today marks 40 days since Noah’s spirit transcended into heaven, following a fatal Juvenile Tay-Sachs Disease diagnosis at the age of 4 ½ years. After discussing prognosis we spent so much time planning what we wanted his future to look like, we never considered we would have to commemorate his life and struggle with such an atrocious monster like Tay-Sachs. The emptiness we feel without the constant care and routine of Noah has been suffocating at best.

As a baby, Noah had some developmental delays, but by the age of two he seemed to be “growing backwards” as his pediatrician would say. Gradually he stopped meeting his milestones altogether and began to physically and cognitively regress. After countless consultations with physicians and specialists, a neurologist discovered Leukodystrophy in Noah’s brain. On November 4th, 2014, we met the mother of all evil when we learned that the Leukodystrophy was the effect of toxic build-up in his brain caused by Tay-Sachs Disease. Slowly we picked up the pieces of our now shattered expectations for Noah’s future and created a list of 50 memorable moments we wanted to share with him. My husband, Hector and I were eager to take on the challenge of giving him a fruitful and inclusive life where he would never feel confined by his physical and mental limitations. Before his passing we managed to check off 27 experiences in the year after his diagnosis date. Quite unexpectedly, on November 1^st, 2015, our Noah Mathew Leos passed comfortably and peacefully at home in his sleep.

I wish we held the same fervor for our future as we did Noah’s. Shortly after Noah’s passing his physicians, family, friends and even total strangers approached us about how we would memorialize Noah. We documented his life and how it impacted our family via social media, and to our surprise our Earthly Angel quickly attracted a number of followers. After his passing, immediately we were inundated with what’s next and how will you honor Noah? With great intention, people readily wanted to do something and help contribute in the planning of a memorial for our son.

We were embarrassed to tell people that after the shock of having to arrange Noah’s funeral, we didn’t want the added pressure of planning a celebration of life. Our community was surprised we have no foundation or prodigious tribute established in his honor. We are dumbfounded on how to commemorate Noah’s life and we have no immediate plans for this massive undertaking. We feel we are not only disappointing Noah, but our community as well for blocking their blessings and willingness to help our family during this time of need. Honestly, we simply don’t have the courage to take on such cumbersome task so early in our grieving process, people can be inconsiderate of time when you’re mourning. We feel a constant, insurmountable pressure to appease these requests, and the guilt of not meeting the expectation of our community further aggravates our affliction. Our grief consumes our family physically and emotionally, we regret the task of piecing together a memorial is far too daunting to even consider at the moment.

The Tay-Sachs disease process is gut-wrenching yet Noah managed to smile everyday through his pain. We found grace in his happiness and with every step we kept pushing forward, it seems unfair fabricating an event for the sake of satisfying everyone’s need to want to do something right now. Noah has a six-teen year old brother, Antonio, and four year old sister, Marina, both actively participated in his care and need time for their hearts to heal as well. My husband and I both hurt over the loss of our son, but our hearts are in peace that Noah is no longer being confined by this agonizing disease.

Although Noah’s physical body may have succumbed, we feel his spirit conquered Tay-Sachs and his victory deserves to be celebrated in a memorable way, but at this juncture we want time to reflect on his life until we are ready to honor this momentous occasion. Our mission was to help carry Noah through the threshold of Heaven and we have the rest of our lives to celebrate the lasting impact he made here on Mother Earth. By choice we are not publicly acknowledging this milestone before we are ready to do so and we feel selfish about this. The four of us want the opportunity to remember Noah and celebrate him privately without the sense of urgency we felt when we learned of Noah’s fate. Now, we will take time for us.

Noah passed almost exactly a year later to the day he was diagnosed. Our family wasn’t prepared to lose him so abruptly. No one was. For now, we heal one day at a time and can’t look beyond into the next day, let alone the rest of our lives. We feel completely defeated that we could not find a cure to keep Noah alive. There is a sting of guilt just breathing at times. It is excruciating when as a new family we are out enjoying a sunny day and realize Noah isn’t physically present with us; as if we intentionally forget him. That is the paradox of our bereaved family: Noah has passed us, we are survived and often feel guilty we are still living.

Our bucket list was a tribute to Noah’s endeavor in his fight against Tay – Sachs disease. We want to pay homage to our little man for warming our lives with smiles he gave us despite his pain, for his encouragement, for redirecting our faith and for the timeless memories we will cherish. It is going to take some time for us to organize and think through the details of planning a dedication to him, but one thing is certain- his commemoration will be monumental and impacting, just like his toothy grin.”

Strength is not Enough

1 Reply

Time is slipping. I’m not really sure how it can move at such an accelerated rate, yet seem to progress so slowly all at once, but it does. It moves on its own accord. You can’t alter it. You may try, but only in vain. Earlier this month, August 6^th to be exact, I was tidying up the house for the evening, sipping some coffee, and heading up to bed-book in hand, to read for a bit, when suddenly a thought hit my like a truck: yesterday was DD. YESTERDAY. For the first time in six years, since its inception, I had missed it.

This was a win.

Diagnosis Day (DD) is when my world fell apart. It was when I learned our precious Miss Elliott was being consumed from the inside out by the ravenous genetic monster known as Tay-Sachs disease that, while first would rob her of every basic form of human functioning, it would also eventually kill her as well. August 5^th, 2009 was the day our world stopped. This was the point of no return. At that moment, I would never be who I had been for the entirety of my life pervious to this point, ever again. A change had occurred. I was a new person, in a new life, living a bad dream called Reality.

For years, even since her death, I’ve dealt with the grief and anxiety of that day preemptively as it approaches. It’s like watching your life on an old movie projector. Jagged scenes flash intermittently into your memories and the feelings behind them are so real they’re palpable. You wish you could look away, but you can’t so you squint through half-closed eyes between your fingers instead and try to take in as little as you can handle at a time. Knowing you’ve survived it already doesn’t make it any easier to see again.

This year it didn’t happen. I missed it, completely. I was ecstatic. Grief didn’t consume me in the days leading up to August 5^th. Normal life did. I was happy to feel that way, normal. Happy not to feel I had been gulping water instead of air. Happy not to feel the days ticking off the calendar just to get through them. Happy because I had been feeling this way a lot recently. It was energizing, reinvigorating.

I haven’t felt like myself in a long time. I’m tired, irritable, overwhelmed, stressed out. And it’s not me. Could I be anemic, have trouble with my thyroid, something else, I wondered. A visit to the doctor and quick blood draw tells me I couldn’t be healthier. My levels of everything couldn’t have been more precisely in the middle of the normal range…on everything. Great.

So what then?

Being a mom is hard. Being a wife is hard. Being a daughter, daughter-in-law, sister, aunt, friend, coworker, Christian, etc. is hard. I’m hard on myself. I expect a lot out of me. I absorb all the stress like a sponge. I expect to keep going, keep moving forward gliding along so gracefully that no one can see my feet paddling furiously below the surface. I put a lot of pressure on myself to make everyone else feel happy by being polite, sucking up their crap, putting my own thoughts and feelings aside to seem agreeable, showing up for everything, saying yes to it all, entertaining delightfully in a spotless home, all with a freshly baked pie and compliment ready to offer up to the next person I interact with. And all I’ve succeeded in doing is feeling like I’m losing myself for everyone else’s gain.

Losing Miss Elliott was hard. It still is hard. And when you feel like you have this image of I’m doing great to uphold, it’s the kind of pressure that builds up until the final straw drifts down on top of you and you break.

In talking this out with one of my few closely trusted friends she sent me a message that I really needed to hear:

“You know, you don’t have to be “strong” and no one expects you to be. You get to freak out, cry, scream, be sad and be pissed off. It’s your love for your family that keeps you moving forward, not strength. I think people confuse strength with determination. You are determined to live your life and carry on for Elliott, Skylar, and Loren. You are choosing to move forward out of love for your family and you do it with such grace. That’s not being strong. That’s being a mother. That’s being a wife. That’s being you.”

I needed that so much. She wouldn’t see me as less valuable if I had a less than stellar moment. Why should I see myself that way? What I don’t need is to try to live up to a false sense of strength that’s my own creation. It’s exhausting, it’s stressful and eventually, you’ll break. I couldn’t be further from perfect. I need to do a better job accepting that. I think everyone else would accept that of me, but somehow it’s harder to come by that acceptance of myself so I’m working on it. I’m taking care of me. Of my body, of my mind. I’m letting go of the hold that all those old obligations had on me. Of all the expectations that I’ve felt like were there from others, and imposed on me by myself. Of my difficult relationship with grief.

A date on the calendar doesn’t have to rule my emotional well-being. August 5^th came and went without so much an acknowledgement of it. I miss Miss Elliott every day. I will always be sad over her loss. It will most likely always be hard for me to deal with, but like my friend said, and even if I stumble, have set backs, or don’t always handle everything as gracefully as I should, I “choose to move forward out of love for my family”, “That’s being me”, and I’m determined to carry on.