Tag Archives: Love

When Love Dies Slowly

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain, Power, and Finding Love on A Mountain Top

3 Replies

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

Better Than Me

Leave a reply

“She’s beautiful!” they tell me. And I know she is, not just in my eyes, but by all conventional American standards, she is. Chestnut eyes, straight nose, high cheekbones, supple lips, long flowing dark, but sun-kissed hair, and easily tanned skin. She’s gorgeous.

“She’s a mini you, gorgeous like her mommy”, they say.

“Daddy’s got his work cut out for him,” they continue.

“Hope he carries a bat”, it goes on.

And it’s fine. I beam with pride at the shallow, and ultimately meaningless compliments, like any other mother would. But she’s so much more than that. And that’s the true, total package. She works hard, brings home straight A report cards. Is artistic, and creative, and thinks outside the box. She’s a friend to everyone, caring, compassionate, and thoughtful. Easy going, quick to lend a hand…obviously I could go on and on.

Skylar

Skylar, Age 11

My point is, that I relish it as my own success. As a mother, I want nothing more than the best for her and for her to be the best, at everything. I’ve never understood the theory that mothers and daughters clash because once a daughter comes along the focus is suddenly taken off of the women who had it on her since childhood. Essentially that her mini-replacement has come along and she’s no longer the star of the show.

What?! As a mother I truly don’t understand this. And I think if you feel that way, you probably shouldn’t have had children at all, at least not in this stage of your life because it seems to me that if you aren’t able to put them before yourself you can’t have their best interest at heart. I want my daughter to be prettier than me, stronger than me, smarter than me, and more successful. I want her to have it ALL.

“I’ll bet she looks just like you at that age, Becky”, someone recently told me. Ha! She couldn’t have been more wrong. I was gawky with no style, big glasses, and a bad perm. No, my daughter seems to have not had to endure the same awkward phase that plagued me from the ages of eight to fifteen.

Me Age 10

Me, age 10 with mid 90’s
style choker and Seinfeld Puffy Shirt.

Conversely, I’ve also endured comments related to my daughter’s looks as more of a consolation prize rather than a compliment. When Miss Elliott was alive, I distinctly remember one person, upon learning of her terminal status remarked , “Well she sure is pretty, and you can love her anyway”.

WTF?

I mean, thank goodness she was pretty too, right…or there would be no reason to love my dying child as I love my heathy one.

Miss Elliott, age 3 years 3 1/2 months

Okay, I know people don’t mean the stupid things they say to sound so ridiculously degrading, but honestly it’s so tiring that sometimes I would rather they just stay silent. And if they simply can’t muster up that ability and feel compelled to have to say something, let it be a simple I’m sorry.

I know you can’t imagine. I know you don’t know how I do it. I know (insert your own meaningless platitude here), but none of it matters or changes the situation. A simple I’m sorry, is really the only thing of value you have to give me anyway.

And for the record, Miss Elliott was pretty. She had bright green eyes, milky smooth skin and hair far lighter than I could have ever imagined any of my children being born with (all three thanks to her Daddy’s Irish ancestry). And I loved the hell out of her. I still do.

And I wanted better for her, too. Better than for me. And do you know what? She got it. She knew nothing in her Three Short Years but unconditional love. She never endured pain, rejection, or abuse. She lived and died a perfect being with a pure soul.

These things, more than just our little girls being pretty should be what we celebrate as accomplishments in parenthood, and life.

Memories of a Lifelong Crusade

Leave a reply

Memories tend to spring up in unexpected places.

Some recent remodeling led to our reorganization of the bookshelf in our downstairs family room. As we were sorting through our treasures, deciding what to keep and what we could bring ourselves to part with (as we tend to be book hoarders, and as such there were overflowing piles stacked against the shelf along the floor), I came across an anthology from a local library contest I had entered in 2011. In it was the poem I had written specifically for the contest about Miss Elliott.

At the time I wrote this poem Miss Elliott was still alive. Our lives were consumed with her care, in the best possible way. I railed against the pitying looks and downward glances I caught in the eyes of others as we navigated our days. My drive and desire was to share with the world how wonderfully beautiful, how extremely important her tiny life was. And to rid it of its feelings of sorrow for us. It was the same drive and desire that would lead me to write my book about her life after she had passed. Purchase your copy of Three Short Years here.

Reading the words I had so carefully crafted brought these feelings flooding back. It was always clear to me that I was to be her voice. Although I still strive to educate others about Tay-Sachs disease and share the story of her life, my platform has changed dramatically from when she was alive as I now carry on in her memory rather than for her honor.

One of the key pieces of information I was determined to convey to the world was that her life may have been different from most, from what was expected, but it was not in any way bad. It was not sad. It was full of unconditional love. As a parent, I feel that many of the things we hope for our children, which the world will inevitably rob them of, were freely granted to Miss Elliott. She was never to know rejection, disappointment, abuse, fear, or unrequited love. She never toiled through pain or loss. She lived a life of nothing but love, acceptance, and care, and she died with a pure soul, having never even unintentionally harmed or disappointed another being.

Sketch Original sketch artwork of a Soulumination photo of Miss Elliott.

She was different, but she was perfect.

And I’ve always wanted the world to know it:

I see her existence on a parallel plain.
I watch as she sits alone in her silence.

When I look into her eyes and I can see forever,
yet out of hers she cannot see at all.

I carry her from place to place and know I am her legs,
for try as she might, hers will not propel her body.

Bound by dependence and no free will,
I am her voice as she cannot speak.

While her failing shell deteriorates
her soul shines brighter and brighter.

Its light, like the sun, escaping its cage
in a feeble attempt to bar it in.

By our paltry standards she may be physically broken,
but her spirit grows stronger each day.

Tired and weak she carried on.
As change comes to her, she also is changing our lives.

Always giving more than she receives,
she asks for nothing in return.

What can you learn from a dying child?
Enough to change the world.

Three Long Years

Leave a reply

We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away. A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time. I worry about her memory. To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them. She is alive in my heart and soul. She is imprinted onto my being. I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours. Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet. This was our life, the one we share. It didn’t look exceptionally pretty to others. It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult. No one coveted it. I kept it close, as close as I could, for as long as I could. No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book. I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here. She taught me so much about life itself. I am eternally grateful to have had the opportunity to be her mother.

To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here:
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Three+Short+Years+by+Becky+A.+Benson

My Husband Does Not Complete Me

2 Replies

He doesn’t fill some void within me, or make me whole. He’s not my best friend or my other half. He’s my husband. My partner, my equal, my rock. A whole separate person of his own who chooses to share his life with me, and I, mine with him.

We were married very young. We knew we wanted to be together, to do this ting called life together, so just one month after I turned nineteen we eloped. We had met when I was sixteen and been dating for two years at this time. We knew that we were ready to begin a life with each other. I know people questioned and even worried about our decision, after all what could we possibly know about love and life at the ages of nineteen and twenty? The answer surely must have been nothing. Close, but not quite. There was one important factor that we did know; we knew who we were. We also knew what path we wanted to go down. We decided to take that path together, for better or worse, to grow with each other by our sides. We made vows and we meant them.

No marriage is ever easy. No marriage is ever fully without trial or tribulation. Everything in life doesn’t always come up roses. Here we are, going on twelve years of marriage later. In that time we’ve experienced career changes, moves across country, and back, the buying and selling of homes, the birth of two wonderful children, and unfortunately the terminal illness and subsequent death of one of them. So here we are, going on twelve years later, and now I feel like I can say I know quite a bit more about love, and life in general, and most importantly, I still know who I am.

I am a whole person on my own. I was not looking for love in order to gain completion of my half-self. I was not looking for someone to make me the person I would be. I am who I am on my own accord. I have family, friends, and an entire community that does not revolve around my husband. I have my own mind. We have separate interests, and hobbies, and thoughts, and passions. Likewise, my husband does not need me in order to function (despite what I may tell people). Without me he would still have his career, his life and avocations entirely his own.

What we do complete, together is our family. Every day, we wake up and make the choice again and again to keep doing this thing called life together. To be Mom and Dad. We don’t always agree, we’re not always on the same plan, but every day, over and over, we choose each other and the life we have built together. We make time for one another. We make room for one another. And aside from just being Mom and Dad, we let each other be Becky and Loren as well. We encourage and celebrate each other’s successes and shoulder the burden’s of each other’s failures.

It is one of my greatest hopes for our family that in this way we will have lead through example so that our daughter will grow into a level headed person of her own who knows who she is and what she wants in life. Someone who will never let her individuality, or thoughts and opinions be swayed or suppressed. (who am I kidding, she already is)

We are strong, not because we have melded ourselves together into the single thought line of one super-person, but because we allow our individuality to exist so that we may each contribute the best parts of ourselves to our family and our life together. Where one has a deficit the other fills it in. On top of this and above all else we respect each other. We are present with each other, while still allowing each other room to grow. We communicate and make every attempt to follow the same strategies to be a united front, so-to-speak.

We argue and fight and get annoyed with one another from time to time because that’s what you get when two strong willed people don’t see eye to eye, but the truth is, I wouldn’t trade what makes my husband him any more than (I’d like to think) he would trade what makes me, me. There are a lot of people who’ve spent a good portion of their life trying to find such a person, and who’ve encountered several bumps along the way. I’m happy to have found my husband at such a young age. I’m happy with the life we’ve built in the time we’ve spent together.

My husband does not complete me, instead we compliment each other, and he does complete us.

Note: Remember how I mentioned at the top that we eloped?
The pictures embedded in this post are not actually those of our wedding,
but of the reception we held for our family and friends three months later.

She Never Told Me She Loved Me

2 Replies

She didn’t show me either. No grand gestures. No small ones for that matter. No kisses or hugs. No cards made at school for Mother’s Day. No birthday presents wrapped in crayon covered tissue paper. She didn’t help out or ask how I was doing. She never even said thank you. So how do I know if she loved me?

Sometimes early on, as I held her she would smile. In those moments my world only extended to the crook of my arm, the safe haven in which she lived. Nestled in my lap she would relax her posture and her breathing would slow. Hey eyes would drift and she would fall asleep in my enfoldment, softly cooing against my chest. Contentedness. She loved me. This is how I knew my love was not unrequited. It couldn’t be told or shown to me, I had to feel it, and I just knew.

My every waking moment I spent caring for her, attending to her needs. Happily foregoing showers, curled hair, or freshly applied make-up. That’s what unconditional love is. It’s something that we discuss incessantly in our society, but not something we practice much of in return. Instead, we spend so much time qualifying what our ideas of true love are, that we forget to put them into practice when they are not self-serving. True love-unconditional love that is, is never self-serving. The terms are mutually exclusive of one another. Unconditional love involves making a choice, and choosing to place someone else before or above yourself is the exact definition of not serving yourself first at all.

We place many conditions on the love we claim to have for others. We put on their shoulders the responsibility to be deserving of receiving our love. Of our spouses, children, parents, friends, we decide first whether they are worthy of our love before we give it, then of how much, to what extant, and finally, we continually reevaluate that worth as time goes on. Through our circumstances and experiences, their actions and behaviors, our expectations gradually evolve. Sometimes for the better, often for the worse.

By holding our love back from freely loving without condition we also hold ourselves hostage from the ability to receive the same love in return from others: to receive unconditional love, you must know how to love unconditionally. As human beings we all fall folly to the trap of qualification by nature. A vicious cycle of lack of love emerges. Unfortunately this is what we know to be the norm. We become so comfortable with these deficits in our lives that we no longer recognize them as such, rather view them as standard operating procedures.

Have you ever asked yourself, by accounts of your own behavior, if you would live up to the standards and stipulations of love in the eyes of others? For true love to reign, shouldn’t the expectation of qualification simply fall away? If the output of one does not begat love from another, and so on, would our paltry justifications of eye for an eye still not eventually make the world blind?

So how do I know I have experienced unconditional love? I have given my all, every fiber of my being to someone who could do literally, nothing for me. Someone who could never repay me. Someone who couldn’t even say thank you. Someone who never told me she loved me, though I told her so all the time. It was never about what I was receiving from her, I was about what I was giving, but she also never placed any standards on my behavior to receive her love either. I expected nothing in return, yet my ability to love was strengthened, my capacity for love was deepened, and my heart was made fuller by it all. Yes, I have experienced unconditional love. Most certainly I have. And I have no doubt that if she could, she would have said she loved me too.

The Sunday We didn’t go to Church

Leave a reply

Two years ago this July I received an unexpected phone call from one of my very dear friends who was in somewhat of a panic. A panic only someone in my position could fully understand. Her daughter was turning sixteen and she needed a favor for her birthday. There was no party planned, no driver’s license test to be taken, or presents waiting to be opened. There was only the grave of a little girl who had died when she was just five years old.

“It doesn’t hit me like this every year,” she said. “It’s just that it’s her sixteenth birthday and I can’t be there to be with her. I’d ask my sister but she’s gone too.” My friend lives far away from where her daughter was buried, here in Seattle, all those years ago and even though her sister, usually able to be there, happened to be out of town as well.

“Would you mind taking some flowers to her?” she asked me.

She asked because she knew I’d understand. Not because I could logically comprehend what that must feel like, but I would understand because I was in the same position. Even though I had never met her daughter, she had died of Tay-Sachs disease just like my Miss Elliott had and we had been brought together in recent years in our shared losses. My own daughter was buried at such a tender age and I too would one day be missing those parties, presents, and milestones. I would be suffering the same heartache she was.

It was a Saturday when she called. Part of her panic was that time was ticking away. Her daughter’s birthday would be here the very next day and she just needed someone to be with her. She couldn’t stand the thought of her daughter being alone on such a special day. At this point, my Miss Elliott had been gone for just five months, and I had yet to have to celebrate one of her birthday’s posthumously, but I knew what she meant about not all birthdays hitting her like this. I knew that her grief comes and goes in waves, but always lingers under the surface of the veil of functionality. Today, it was ripping right through it. Today, it was breaking her down.

Of course I would go. We would leave in the morning, drive into the city, and navigate our way through the maze of the cemetery to her grave.

I heard a parable once that went like this: A boy and his mother were on their way to church. They stopped because they saw a motorist out of gas on the side of the road. When the mother pulled the car over the boy questioned her, asking “Mother, if we stop to help, won’t we be late for church?” “Son, if we don’t stop to help, there’s no point in going to church at all,” his mother replied.

What’s the point of a relentless and intensive study of life’s guidebook if you forget to look up and put it into practice once in a while?

That Sunday we did not go to church. We picked up the flowers from the florist and drove to the cemetery. We walked as a family to her grave and carefully placed the flowers on her bench. We did our best to honor this so-loved child. We wept for her, for her mother, for her brother and father. We wept for Miss Elliott, and for ourselves.

I knew I would call someone in a panic myself one day. I will need someone to bring flowers to my Miss Elliott at some point too. We will all be in the position of needing help from others to some extent at some point in our lives. Thank goodness for the kindness of the motorist who notices you standing on the side of the road and slows down to help.

This year her daughter would have been attending her senior prom. She would be graduating right now. She would be turning eighteen next month. Soon she would be off to college to start a new chapter in her life. Glowing with the excitement of young adulthood. Buzzing with the energy to make her way in the world. Unfortunately for her, it was a life that never was to be. In the hearts the mind’s eye of her family, those who love her, and all who were here for her as she left this world behind, she will forever be that five year old little girl.

That Sunday we didn’t go to church, but we put into action the sentiment behind the words in The Good Book, nonetheless.

A Paralyzing Fear

1 Reply

Since we’ve returned from the NTSAD Annual Family Conference several children in our community have lost their battle with these devastating diseases. It’s oddly unsettling how these events; diagnoses as well as deaths, seem to occur in cluster form. Beginnings and endings. As is the circle of life itself, such is life as part of the rare disease community. When you’re dealing with diseases that only allow for a few years as a total life-span, unfortunately, this process is exacerbated immensely.

A little over a week ago, aside from the phone call and messages I sent via email, I ventured out specifically to purchase a card to mail to a family who lost their special little girl. She was just three years old. The same as Miss Elliott. She was her family’s world. Suddenly, the life they had known and were so focused on cultivating and maintaining, with a rigorous feeding and medication schedule, positioning and comfort care, as well as every attempt possible at memory making was gone. Just like that. Now her family has to adjust their routine to suddenly allow for the “freedom” (terrible word, as if their loved one had been a shackle), that they most likely do not want the luxury of having. This young girl’s older brother, the only other child in the family, will now be forced to live life not as an only child, but as the only living child, just like Skylar has had to do. Not what his mother had planned or wanted for him at all.

As the days passed and I had trouble knowing what paltry sentiment to express in the card, as nothing can do comforting justice to the loss they’ve experienced, and then missing the mail truck over and over, too much time had passed and at that point it would have seemed like more of an afterthought, so I never sent it. A good intention, but we all know what road is earnestly paved with those. The worst part of not sending this card was tucking it away in my drawer for future use. What a truly horrific thought. I already know that at some point yet another child will die and this card for sympathy in the loss of a daughter will be queued up for use once more.

Shortly after this child had passed, another took a steep turn health wise and suffered that same terrible fate. These precious, perfect children fight so valiantly, and yet the end is the same for all.

As if living through you’re child’s life and death as a very medically fragile, terminally ill person isn’t disturbing enough, a sort of secondary effect, or phenomenon of happenstance seems to occur with many of the parents like myself. At first, when your child is diagnosed with a terminal illness and you’re able to gain your bearings enough to carry on, you may experience some level of acceptance. Whether you want to or not, there’s no altering the course of your path so acceptance may come your way begrudgingly, but you have no choice in the matter. You decide you don’t like this, you hate it, but you’re paying your dues here, and as such are absolved of any future debt. The problem is: it isn’t true. You’re not in the clear to side-step cancer, car accidents, or any of the other atrocities of life. Once you realize you cannot control the future, even after suffering the world’s worst heartache, you’re back at square one, except you’re not. You’re worse off because now you live with the paralyzing fear that something will happen to your other child(ren) as well.

It seems that most mother’s in my position, those who have experienced the death of a child, all suffer from this phenomenal amount of fear that reigns over their lives and causes them to hover over their children’s every move. These fears are indeed paralyzing. A restriction from a typically functioning life, if you will. I can barely stand to let Skylar out of my sight. On play dates and sleepovers I’ll call the parents to ask if she’s “behaving herself”, when really the reason for the inquiry is to have confirmation of her wellbeing. I find myself not wanting to take her into crowds or even simpler places, such as the roller skating rink she so often begs to patronize (too hard to keep an eye out as she circles ’round and ’round). It’s unnecessary and controlling, logically I know this, but emotionally, I can’t help myself. No one ever, ever thinks they can get through losing a child. Once you’ve been forced to, you know you can, but you never, never want to have to prove your capacity for strength and resilience regarding one of your children ever again. You try as hard as you can to surround yourself in your own protective bubble and never leave its perimeter.

As the clustering of terrible news in our community continues, I learned that one of my dear friends, across the pond, as they would say, who has already suffered that unimaginable loss, was suddenly struck with another paralyzing blow. Her healthy older son, her only other child, was diagnosed with bone cancer. I read this information as it came across the newsfeed of my phone and my heart sank. It sank for my friend, but also for me. This was an incredibly selfish feeling to have, but I couldn’t help myself. My fear took over and my mind turned to my Skylar. I broke down and cried for my friend and the position she’d been put in. I cried at the thought of being her. The worst of what she said about it was that she had to explain to her son what was happening to him. The shock of such a notion. No one should ever have to entertain this thought. No one has to explain to our affected children that they have Tay-sachs, Sandhoffs, GM-1, or any of the other allied diseases. She now had the daunting task of telling her fully cognizant child what exactly he was facing. The definition of agony as a parent.

How does one do this? How does one find the courage to keep going, day by day, not only for themselves, but for their child as well? A Dragon Mother has no choice. A Dragon Mother puts her children first, every step of the way, and while she may be stressed, exhausted, worried, or completely broken down, she keeps moving along seamlessly because the protective all-enduring love she has for her child is a spring with an endless flow.

Dragon Mom: a term coined by my friend, Emily Rapp, the mother of a child with Tay-Sachs herself.

“We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high.”

The mothers and fathers in my community are all Dragon Parents. We know that most outsiders are afraid of us, or rather, of becoming one of us. The thought alone is usually unsettling enough to keep them at bay. It makes it increasingly more difficult as time goes on to associate with those outside of our dragon’s lair, but matters to us none in the least. All that matter’s, at every turn, is our children’s here and now. This is the only thing we can concern ourselves with. We will fight for them with every ounce of our being. We will absorb the fear and frustration, the discouragement and pettiness of the rest of the world, and we will exude only love, in it’s purest form toward them. A mother’s love trumps all. Our bodies have at one time, miraculously consisted of two hearts, and our children are the only ones who know the sound of the beats of ours from the inside as well as out. Every beat of my heart is a call out to my children, and the beats of theirs, the echo back.

You can read Emily Rapp’s article, “Notes From a Dragon Mom”, here:
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=0

The Son I’ve Never Known

Leave a reply

It’s an odd form of grief, pining away for the son I’ve never known. Odd, but unfortunately, I’m used to a large part of my life revolving around grief these days. I love him, I miss him, and I truly feel that he is missing from me. Is he cold? Does he have a coat? Who is caring for him? Is anyone showing him love? Did he receive any presents at Christmas? What kind of situation is he living through right now? These and many more, are the questions that relentlessly plague my mind when I think about him. We don’t know what he looks like, sounds like, or what kind of personality he has, but we love him wholly and though we’ve never met, there’s already a space within our hearts carved out specifically for him. That space will only be filled when he finally comes home to us.

For two years now, our oldest daughter, Skylar, has waited patiently for the brother she’s never met. She talks about him, makes plans for him, and put presents of drawings and craft creations in his room, all while dreaming of some day knowing him as a living breathing part of our family, instead of just an abstract idea. He exists already, in theory, in spirit, and somewhere in the world, in the flesh.

The longing for our son started several years ago. Loren and I had always wanted to adopt some day. That was the plan, from the beginning. Someday, down the road, when the time was right. In the meantime we had two beautiful girls, but when we discovered that our youngest daughter, Miss Elliott, was terminally ill at the age of ten months old with a rare genetic condition that we had unknowingly passed on to her, we could see that our path had been made clear. There was no treatment or cure for her condition, and she would pass away, most likely by the age of four years old. Our grief for our daughter, our family, for what we would never have, and what we would lose, began in that very moment. Understanding that from this point forward, adding to our family biologically would never again be an option again was devastating in itself, but remembering the idea for adoption we had first held so many years earlier was comforting and secured our belief that it was the right choice for us. Losing our daughter to Tay-Sachs Disease, just over two years later, was nearly an unfathomable occurrence, even with a preemptive understanding of the situation itself, it did nothing to diminish our pain.

We had never intended to stop growing our family at two children. Even if we had made that decision, as a woman, suddenly not having the ability to make it for myself made me feel as though I were being robbed of a part of my femininity. We didn’t want Skylar to grow up as an only child. We wanted to round out our children, our two beautiful daughters, with a son of our own as well. We wanted Skylar to have a brother. A sibling to play with, laugh with, fight with, to tell secrets to, and even to gang up against mom and dad with. Adoption was the answer, and our chance to expand our family. This was our chance at having the son we may, under other circumstances, have never known. Beyond that, we felt that it was our duty to do so. Who knows what life would have had in store for us had we not lost our Miss Elliott. Would adoption have been nothing more than a pipe dream or a well intentioned idea that we never got around to, slowly cooling off on the back burner of life? I don’t know. What I do know is that we felt that because of the blessing of Miss Elliott’s, albeit, too-short life, we had been given the chance to help another child in need. A child that may not otherwise be able to experience the love of a family that he so deserved.

Another blessing of Miss Elliott’s life came in the form of Skylar’s ability to express a deep and sincere sense of compassion for others. She is so kind, patient, selfless, and accepting of everyone. She amazes me with her strength and resilience every day. She gives me reason to move forward. Her sister was different, but not to her. Miss Elliott was the only sibling Skylar had ever known, and Skylar has always been proud to be her big sister. Though she couldn’t walk or talk, couldn’t see or function cognitively, it never mattered to Skylar. She loved her sister for who she was, not what she could or couldn’t do. There were no qualifications for her love. She gave it willingly, without condition or reservation.

When I see Skylar welcoming and befriending a new student in class, helping a special student to achieve a task, tending to the younger children in a group, excitedly pointing out her sister’s name on a sign, or even praying for her brother to come home soon, I know how truly blessed we are and how wonderfully all of our children have changed our lives. Whether they’re here with us, have moved past us, or have yet to come home to us, all of our children have given us extraordinary gifts in life that we couldn’t imagine living with out. From the daughter I knew for a short while, to the daughter who continues to teach me every day, and the son I’ve not yet come to know, I am blessed with riches beyond worldly compare.