Tag Archives: Life

Kodachrome

Start and stops, beginnings and endings. We think about them a lot this time of year; as children complete another year of school. Some move up, and some move on, forever.

Skylar is finishing her eighth grade year next week, and the moment she does, she’ll begin her journey as a high school freshman; literally the next day. She’s enrolled in summer school courses to get the jump on her high school classes and start accruing some of those twenty-four credits she’ll need to graduate. She’s only thirteen. I often wonder how, and when we got here.
Skylar 2018

She has clear-cut ideas, plans, and dreams for her future. She intends to begin collage courses her junior year of high school. I’m proud to see her taking the necessary steps to begin accomplishing her goals. And of course, in the midst of it all, I can’t help but ruminate on the effervescence that was Miss Elliott’s short life with us.

Who would she be today? What would she look like, sound like, whose mannerisms would she have? I’ll never know. And it hurts too much to attempt to imagine.

In many ways these passing’s of time remind me how I’m still haunted by the words I spoke to Skylar one early fall afternoon; October 2nd, 2008 to be exact. Buckling her into her car seat to set out for a day of fun, just the two of us in downtown Seattle. She had just turned four years old. The next day I was to be induced and Miss Elliott would be born. I can still clearly see and hear myself saying to her,

“This is the last day it will ever be just you and me”

How wrong I was. How utterly, unknowingly, unfathomably wrong I was. Back when I saw the world in nothing but Kodachrome. It wasn’t so for me; not that what has been was any less magical or beautiful in its own way, just also heavier and more solemn than I would have expected. For Skylar, I hope, as all mothers do, that she has many, many years of nice bright futures ahead of her. I hope her world never stops glowing in the brilliance of adventure and possibility. Mama will never be the one to take her Kodachrome away.

Give us those nice bright colors
Give us the greens of summers
Makes you think all the world’s a sunny day

Oh yeah

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

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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.

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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

Love Them and Let Them Grow

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“If I know Becky,” my dad says, “she’s going to spend the next two weeks saying to herself, ‘Is she ok? Is she having a good time? Is everything going alright’? She needs me! And if I know Skylar,” he continues, “she’ll just be having a great time, being the life of the party, leading everyone around.”

He’s right. On both accounts.

It’s day one of her two weeks at sleep away camp. I miss her. I was on the verge of tears last night as she’s never been away from home this long. I am thinking all those things my dad said I would think. I’m also wondering how I get through these two weeks without her. I always do. I’m a worrier. More accurately, I’m a planner. I like things orderly and under control. I like to be able to anticipate the next move.

One common theme I hear from many parents who have lost a child is that they don’t sweat the small stuff anymore. Problems no longer seem so big, so daunting. Not after the unimaginable loss they’ve suffered. I wish I could say that was the case for me, but conversely, it had just seemed to make me into someone who now finds themselves acting neurotic. Suddenly everything seems to be an issue. Little things feel like big things. I struggle to keep every moving part in its place. I want consistency.

Some parents of child loss have told me that they actually find they are distancing themselves from their children. It’s a psychological need to guard their hearts. Hearts that can’t handle another loss like the one they’ve already suffered. A preemptive attempt to soften any oncoming blows.

I understand this thought process. My reaction after the loss of our Miss Elliott, however has been to grip everything tighter. To hold on a little longer. To savor every second, even after it’s gone. Feeble, I know, but nonetheless, if I could will time to stop I would never let another second tick by. I’d live in this current moment forever.

The struggle is to find balance. I haven’t (yet) let the neuroticism take over. I actively try to make sure that I’m allowing her to grow and thrive, and experience life on her own terms…well, sort of. Evaluating every day to ask myself; was I too strict, too permissive, etc. What’s the magic formula?

My husband tells me it’s the worry that let’s you know you’re a good mother, because really, when you break it down, worrying (within reason) just means you care.

First day of kindergarten, eight years ago. Ready to take on the world from day-one.

She’s strong and outgoing, and like my dad said, she’ll probably be running the place by the time the week is out. We joked that there’ll be no tearful phone calls home in the middle of the night asking us to come pick her up. And I’m proud. Proud of her strong will, gumption, and tenacity. Proud of her unbroken spirit, outspoken opinions, and every-present resiliency.

After the summer she’ll be going into eighth grade. I only have one more year until she’s in high school. How did it happen? Where did the time go?

The most important lesson my parents have taught me that carries over into my own parenthood is just to “love them”. In the end it’s the only thing you really do have control over. Just love them, and let them grow.

A Grieving Parent’s Growing Pains

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“Good night”, she said. “I love you.”

“Good night. I love you too my sweetheart”, I replied. I was reading on my bed when she came in. I watched her walk away and marveled at the amazing young woman she has become. And I questioned how it happened, when.

I blinked and here we are.

We spent the weekend attending various graduation parties. Life is in full bloom for these new young adults. Their wide eyes begging to take on everything in sight. The increasing pace of their beating hearts palpable to anyone near them as they overflow with the anxiousness to take that first step in their new journey. Laughter and joy abounds. Their parents, an incompatible mix of immense pride, yet also the lingering pangs of sadness over that fact that they will soon be leaving, the fact that they are no longer needed the way they once were.

“Five years and we’ll be here ourselves”, I tell my husband. I can hardly believe it. Just stop I plead with Time. Just wait. Just give me a little longer. Where did it go? Was I even present for it? I can’t remember it, I think to myself. Where was I? What was I doing? When had she stopped being a little girl? Have I done enough, taught her enough, instilled in her our values so she adopts them as her own?

I become misty eyed, feeling like every mother must, in losing my little girl to womanhood. I know my time with her is limited. And I know that she, like every other child who grows up, must want the freedom and ability to experience life on her own terms, too.

Then, on the other hand, I’m grateful for every bit of it because she’s growing and flourishing. When I look at her, I see all the same magic and inspiration I see in the eyes of those graduating seniors. And I want her to have every bit of goodness and opportunity the world can offer.

I try my best to prepare her. I’ve never wanted to fill her head with fairytales. I tell her it will be hard, she’ll have to fight for what she wants, push through her trials, and to never take a back seat. I encourage her to pursue her dreams, with the understanding that being smart, while she is (astonishingly so), isn’t enough on its own so she knows she has to be willing to go out there and go after what she wants instead of sitting around waiting for it her find its way to her.

As much as it pains me (but of course I’m proud of her and happy for it) to see my child changing before my eyes; becoming her own person, blossoming into a being all her own; not needing me, I know that the alternative is far worse. I know from experience. And there is deep sadness. The hole in my heart reserved for our Miss Elliott, gone more than five years now opens a little wider in these moments. In the undeniable moments that reaffirm each time we live through them that there will never be these milestones and celebrations for her.

I will never know who she would have grown into being. What she would have accomplished. Whose lives she would have changed. She will always be three years old.

As the gap between my girls continues to widen exponentially, I can only hope she will carry her sister’s memory with her as she navigates the roads of life. When she has no siblings at home to share secrets with, fight with, turn to, or champion one another I can only hope that in her heart she feels a connection to her sister and knows she’s not an only child, even if she has to live this life as one.

I hope she will use her loss to propel her to reach new heights in both love and life. I know that she is by far more compassionate and understanding of others and their own plights, at such a younger age than she would have otherwise been. And while I would have never asked to place this burden on her, as a grief counselor once told me:

“We must be good stewards of our grief.”

In that spirit I will not wallow in my sadness, I will not stunt her own growth and development, but I will use it to further advance my daughter’s dreams and aspirations as she grows and matures, to the best of my ability, in honor of a beautiful life cut far to short. In honor of the live I have, and always will for both my beautiful girls.

Pain, Power, and Finding Love on A Mountain Top

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McKenzie Johnson is someone to look up to, though she, herself would be uncomfortable with the moniker of role model, it’s true. I admire so much about this woman and what she has overcome in her life. A grief counselor once told me that we need to be good stewards of our grief, meaning that instead of allowing it to swallow us up and tear us down, we can use our experiences to help others facing similar trials. And likewise, Mac is a good steward of her pain, even through the struggle of overcoming addiction.

In my opinion it’s the individuals who have been through various forms of hardship who have the most to offer. It’s one thing to live your whole life on top, but it’s quite another to be writhing in the depths of despair at some point, and to choose to claw your way up to the top instead. That’s just what Mac does, every day. She literally climbs mountains, and somewhere along the way she found her voice, herself, and even though she wasn’t looking for it, she found love.

“Just over a year ago I wrote my first guest piece here, Numbing the Pain. In the past year a lot has changed, and a lot has stayed the same. My mom still has cancer, I am still in recovery, I still find it hard to show emotions to those closest to me, my past still haunts me from time to time. I have climbed Kilimanjaro; and found love doing so, I am building a home, I have become an aunt, I have left my job for the time being. I have stepped into many unknowns, and all my expectations have been blown away, like they usually are.

I was reading an interview with Pamela Abalu and her parting statement was, “fear is imagination used for the wrong purpose”. How true that is. When you have a loved one with cancer, and you yourself have the disease of addiction, there is a lot of fear. In fact, I think fear drives us all in ways we may not even realize. After almost five years of being sober my fears have evolved from say, wondering if I would wake up the next morning, to am I enough, have I done enough, am I treating my loved ones in way that I am proud of, will anyone find out that I am making it up as I go along?

They say addiction is a family disease, and it’s true, I know it from experience. I know now the many ways in which this disease of mine affected the people I love most. And I only know this after finally being forced to acknowledge it in treatment. I would say cancer is also a family disease, affecting all those around the one with the symptoms.

Mom has always understood me as a being, knowing things about me before I was ready to acknowledge them myself. In my teenage years, before I was an active alcoholic, I was deep in an eating disorder, anorexia and bulimia. One day she pulled the car over in our neighborhood, looked me straight in the eye and said, “I know what you’re doing to yourself, do you want help?” I said “Yes,” I still see my therapist she found for me. The same one who many years later would look me straight in the eye and say “You would benefit from inpatient treatment.” And I did. I see her tomorrow. Mom would hand write me letters in college, saying that if I ever needed help with drinking that they were there. I would throw them away. I wish so badly I had one of those now. Mom is the type of person who if I cry, she cries, and not just because I’m her daughter. She’s most empathetic person I know. She will move mountains for people and causes she cares about.

She is soon to start her fourth treatment in five years, this time a deadly yet potentially curative cocktail of chemo, immunotherapy and a stem cell transplant. There is nothing easy about what the next six months or more will have in store for us. There is nothing to really prepare any of us. There have been days where I thought I would implode. Around treatment time my depression and anxiety flare up, my thoughts of alcohol increase, fear is a constant companion. Work has been hard to manage, a new relationship has helped so much although has its own stressor of distance. But the process for me this time has been different; I have been more present, going to appointments, helping make decisions, telling mom the sometimes-hard truth that she does not like to hear, and looking at things from a different perspective. I’m focused.

Sometimes, the closeness of others and the reality it brings is still difficult for me to swallow so I show my love in different ways, like raising (a considerable amount of) money for the Leukemia Lymphoma Society again this year through the Big Climb. Events like these help me to channel my energy and desire to help in a positive and productive way, as much for myself as for the one I’m helping. I cannot say that I am a natural caretaker or the best person to be at your bedside, but I am a good decision maker, can ask hard questions and maybe push my mom a little more in areas others wouldn’t, just as she’s pushed me. She can be tougher than she knows. I’ve learned that I can be, too, but I still won’t cry in front of her.

In being more present for my mom and family, work has seen me through more than a few breakdowns recently. Again, being vulnerable in front of people who are not my loved ones is far easier for me than showing those who should be closest to me what I am feeling. I run a team that does over a million dollars in sales a year, I was assisting on teams doing over six million a year before I got my own. I have always put immense pressure on myself to be the best at everything I take on, my therapist would say I am a perfectionist, and I am not ok with being “ok”. I have a hard time saying “no,” and an even harder time asking for help. That’s part of the reason I climb. To get my mind frame out of focusing on the constant pressures I inflict on myself, to get out of my head, to just breathe.

Having a partner to balance and support me, to point things out that I miss, to have a different outlook on things; a healthy perspective has made a world of difference. I know that I should not go through this alone, but I have a disease that wants me to isolate, that will creep in through any vulnerability. If I have learned anything in recovery, it is that we cannot do it alone. This time I didn’t. I asked for help, maybe a little too late after one too many things were put on my plate, but I did and I am proud.

The last and only other time I took a significant amount of time away from work was when I went to treatment for my alcoholism. All in all, I was there for five and a half months. I then chose to live in the nearby community for a few months after that. It was the best, and hardest decision I have ever made. If you would have asked me a few months ago what could possibly take me away from work, my answer would have been, The Pacific Crest Trail or travelling the world for a year, but what has taken me away is that I am taking this time to take care of myself, and my mom. I don’t want to have to go to treatment again, I never want to have to tell my family I relapsed. I have a constant fear of this, and it is truly terrifying for me.

I was never the little girl who dreamed of finding a husband, getting married, and having kids. I have always been independent and self-sufficient, almost to a fault, living my life in near protest of it, almost as if I had something to prove. Or maybe just something to hide. I always knew that if I did happen to find that person it would have to a partnership, and someone who understood my independence, wasn’t scared of my past, could live with my current lifestyle of not being around alcohol, could draw my thoughts and feelings out, allow me to cry, to be the tough one, to celebrate my success and not be intimidated by it, make me want to share my life, and let me climb the mountains I love so much.

I found him, on the tallest mountain in Africa. When we first met I thought he was handsome, kind, quietly confident, self-assured and aware, and I remember not being able to tell how old he was. Over the next few days I was stuck by his patience, his ease with the locals, culture and language. He led our group of four incredibly independent, strong, wickedly funny, successful women without so much as breaking a proverbial sweat. We were on the mountain for seven days. He later told me he knew he loved me at camp two. But at camp two I was busy trying not to let my feelings show, maybe so I didn’t even have to acknowledge them myself. That day we all took a popular little side trip from camp. It was very busy and I was having some anxiety being around so many people, and the hike made it worse, I think he noticed that. When we returned to camp I heard him say to another guide, “I’m going to take her on a separate hike, she’s very active.” That awareness and kindness wasn’t lost on me. Our little hikes became a theme for the rest of the climb. This is where we really got to know each other, just the two of us, on little side trails on Kilimanjaro.

After the climb, we convinced him to join us all on safari. Following that, we both happened to have tickets to Zanzibar, so there we were able to spend our first time alone together. I have never had something feel so easy, right. In the following months, that has not changed, though so many things have not been easy. He was working and living at Crystal Mountain, me in Seattle. And now he is in Alaska, and me, in Seattle. But he has never once shied away from me, as I have with him, first because of our age difference (he is considerably younger than me), then distance, then because anytime I let someone get close, I try to push them away.

I know I am clearly still struggling with my ability to be vulnerable and at times I have even been willing to lose something that I care about so much because of it. That part of me has never made sense, and I am working today on why I can’t get over this wall or break it down. This is a theme not only with my partner, but family as well. I am never easy, add in my mom’s treatment regimen, the usual family dynamics, significant distance in a brand new relationship, all the opposite of easy. Yet he has never wavered, showing me his emotions, love and support all along the way, and not only for me, but for my family as well. I love him enough to cry in front of him, to ask for his opinion when making big decisions, to make us a priority, above myself. He gives me another reason not to drink, not to stay in my depressive tendencies, or act on them. He may not have experienced anxiety, or any of these other issues personally, but he cares enough to stand by me through them. And now I can let him which to be quite honest, feels foreign and scary and certainly does not come naturally. Just as I have to work on my sobriety, myself, my mental and emotional well-being, I have to work on allowing someone to love me, as I am. And believing that they will”

All photos courtesy of McKenzie Johnson

A Five Year Study in Grief

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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

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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.

Extending Kindness Through Grace

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In the ten weeks following the two very risky emergency surgeries my dad underwent in August we’ve spent our weekends visiting him in the hospital where he remains, due to myriad complications, and is working on his recovery.

He is being cared for in the hospice portion of the VA medical center, and while we are hopeful he can come home for his remaining time, the outlook is not certain.

Each Friday after work and school both myself and my brother and our families drive the two hours to the VA to sit with him over the weekend. Each Sunday we return home for another week. It’s difficult being so far away, difficult seeing dad in there week after week, difficult on mom working, being there, and trying to keep everything running in the meantime. Of course, I’m no stranger to caring for an ailing family member.

Our life with Miss Elliott taught us so much about the precious and fleeting nature of life and time. And even more about kindness, both what we’ve experienced from others and what we can provide.

good-thoughts
There’s a pizza place around the corner from the VA. We’ve taken to eating there on Friday nights. We walk over, place an order for carry out, and bring our food back to dad’s room so we can all have dinner together.

This last Friday, as my sister in law and I were waiting in line, next up, deciding what to get for everyone a woman behind us asked if she could go ahead of us. We had decided, but were still holding our menus and she let us know she was just picking up an order. I said yes. It was no issue, really. A few more seconds waiting wouldn’t hurt.

After we placed our pizza order we took our to-go container for the salad bar over to begin constructing our salad. A man, who was apparently also behind us in line came up to us and said,

“So, I have to ask, did you feel obligated to say ‘yes’ to that woman’s question of letting her cut in front of you? I mean, that was a little rude.”

“Oh, I suppose. It wasn’t really a big deal though. I didn’t mind,” I told him.

“It’s like she was saying ‘my time is more important than your time,'” he continued.

“Maybe, but I’m really just practicing trying to extend grace where I can, so it was ok,” I replied.

“Well, you’re nicer than me,” he admitted and walked away.

It really got to me. What would I have gained had I denied her? It really didn’t interfere with my time. What if she was in a hurry? What if she wasn’t? Maybe she simply had bad manners, was impatient, or generally inconsiderate? It didn’t matter. None of it undid my act of extending a moment of grace to her through this tiny kindness.

We should never regret the kindnesses we’ve extended to others, only the ones we didn’t.

And why would this man have wasted the opportunity to act kindly? What would he have gained? Even if this woman was acting selfishly, does a kindness not counteract that selfishness? His unkindness would have only multiplied it.

I think the issue at hand is the idea that two wrongs counteract each other. Isn’t that the problem with society today as a whole? Haven’t we stopped giving one of our loves away when we have two? I think we tend to greedily keep both for our self. Instead of just being thankful for one days’ portion we’re constantly looking to store up enough for tomorrow too. The problem here is that we get to a point where we feel we can never have enough, and in the midst of our search for more for tomorrow we forget to look out for who doesn’t even have enough to get through today.

Maybe terminal illness helps you understand what’s really important, and conversely what’s not. I would argue that it does. It’s a hard way to learn those things, and luckily most people are blissfully ignorant to the difference in the two, but many of us were not afforded the luxury. Although, honestly, I think it’s another luxury in and of itself to know what it means go forth and try to spread goodness.

One of the ways I continue to honor our Miss Elliott’s life, and to spread Tay-Sachs awareness is to give out Random Act of Kindness cards.

Front of Card

Back of Card

It just so happens that we had given some out, attached to some bags of candy for the nurses and family members in the hospice center that evening. I wished I could have given one to the man in the pizza place, but I’ll just have to hope my words to him about grace will have sufficed. I hope he carries them forward and finds a way to exercise extending grace to others too.

What it Feels Like for a Woman

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

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

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

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

“Don’t should on yourself.”

Yes!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

boxing-woman

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

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

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

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

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

NO!

Then turn around and walk away, tall.