Category Archives: Life

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.

Halcyon 1

        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

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Pain, Power, and Finding Love on A Mountain Top

       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. 

 Mac2

       “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.  Mac6Mom 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. 

Mac5

        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.

        Mac3After 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

Extending Kindness Through Grace

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.

 

 

 

Memories of a Lifelong Crusade

Memories tend to spring up in unexpected places.

Some recent remodeling lead 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.

SketchOriginal 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.

A Life, As Told In Numbers

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Sorrow, Strength, and Seahawks

I’ve lived in Washington state (nearly) my whole life.  As a child my family moved here from Oklahoma, where I was born, when I was just one year old.  My husband and I traveled to Texas for his work and put in a two year stint there.  It was just long enough to get the job done before we came running back up to the Pacific North West.  Both of us having lived on the eastern side of the state before, this time we were one our way to Seattle, just about as far west as you could go.

Eastern Washington and Western Washing are two very distinct worlds all their own separated by the Cascade Mountains.  I grew up in three hundred day of sunshine a year surrounded by desert foot hills covered in sand an sagebrush.  I’ve been told that Rattlesnake mountain, just outside of town is the highest peak west of the Mississippi that doesn’t have a single tree on it.  If you don’t know much about Washington state, you’d probably never guess that we have a vast desert at the center of state itself.  Western Washington, on the other hand is a lush green oasis.  There are rivers and streams everywhere, forests so thick that you can’t see them for the trees, and mountains topped by alpine glaciers, and the cliff-lined vast Pacific Ocean.

Moving to the other side of the state, and back from Texas was an adventure.  It was January, 2008 and on the road home, I discovered I was pregnant with our second child.  New job, new place to live, new baby, oh what and adventure it would be.

Miss Elliott was born on October 3, 2008 and we would live just outside of Seattle for the next six years.  Of course, as it so often does in life the adventure we had dreamed up came to resemble nothing of what we had planned.  Miss Elliott was born with Tay-Sachs Disease and she would die on February 3, 2012.

I despise the winter.  The cold, and death it brings.  The darkness of Seattle, inundated with it’s never ending rain.  Sometimes it’s just too much to bear.  But in 2013 the Seattle Seahawks began a winning streak that was encouraging and uniting the city, giving all of us something to look forward to, and something to be proud of.  That might sound petty, or stupid, or even superficial but being a part of the synergy of the city itself was electric.  It was as if everyone came together for a common goal.  It inspired, and strengthened, and for me, it distracted.

As the Seahawks continued their winning streak and went into the playoffs I was lucky enough to go to the game in which they defeated the New Orlean’s Saints.  You couldn’t believe the roar of the crowd in Century Link field.  The intensity was palpable.  With just one game left in the post game season, if they won they would be on their way to the Super Bowl.  The previous Super Bowl had been held on February 3, 2013, and marked one year since Miss Elliott’s passing.  Some friends invited us to a party.  Loren said yes before he realized the date, but we kept our obligation and attended anyway despite my desire to remain home in bed.  In the end, I was glad for the distraction.  So this next year, as we made plans to attend their party again, on February 2, 2014, I was happy that our Seahawks were going to be playing and it gave us something positive to look forward to.

Last summer we moved away from Seattle and back to where I spent most of my childhood to what I consider to be my hometown.  Here we are in a new house, with new jobs, and a new school for Skylar, and oh yes, finally, the sun.  But now for the first time since we’ve moved, as we circle back on another year and our Hawks have done it again, I find I miss Seattle.  I miss the energy and camaraderie swirling around the atmosphere.  I miss the unification of all Seattleites in a common goal.

February 3, 2015 will mark the third anniversary of Miss Elliott’s passing.  This thought is especially troubling to me because of the fact that she passed when she was three years old.  Meaning that this year there will come a point at which she will have been gone longer than she ever was her here.  I’m happy that we’ll be going back to our friend’s Super Bowl party again this year, to be there in Seattle with the friends who knew Miss Elliott throughout her life and to cheer on our Seahawks as they defend their title of Super Bowl Champions.  I’m happy our boys made it to the big game once again.  And on February 1, 2015 I’ll once again be happy for the distraction that takes my mind off of the sorrow I feel, especially strong, at that time of year, this year in particular.

It may only be just a game, but oh, for so many people it’s so much more.  Go Hawks!

No Words

“You can be amazing you can turn a phrase into a weapon or a drug” -Sara Bareilles, Brave

Words hold power.  The power we assign to them.  We get to decide what they mean, and we can do so on an individual basis.  They can mean one thing to one person and quite another to someone else.  In this situation we’re at risk for our sentiment being lost in translation, so to speak.  Words convey thoughts, feelings, and emotions.  With them we can tell stories and share moments in time.  We can even recall memories and give those meaning as well.  They can also be used to hurt.  Though they may not break your bones the way we’ve been taught that sticks and stones will, sometimes words will hurt you even more.  All the words in the world, all of their uses, meanings, and inferences, and sometimes we can’t seem to find a single one to do us justice.

What do we do when words escape us?  How then do we convey those thoughts and feelings whelming up inside of our hearts and minds?

This week I found myself standing in front of the greeting card section of my local grocery store.  I was there to buy a card to send to a friend.  I wanted her to know I was thinking of her. I wanted her to know I was remembering her son’s life, the anniversary of his birth and subsequent death later that same day.  I wanted her to know he is not forgotten.

I stood there, in front of the cards searching for the right one.  The one to convey my sympathy, unfortunately, my empathy and also comfort to her as well.  There were cards that expressed you were thinking of someone, cards of support, and cards of sympathy for loss of grandparents, parents, spouses…and even pets.  Yes, pets.  But there were no cards for loss of a son or daughter.  Loss of pets, but not of children.

Cards

They don’t make cards for that, not that they stock at that store anyway.  They don’t make words for that.  When you lose a parent you are called an orphan.  When you lose a spouse you are called a widow(er).  The very idea of loss of a child in our society is so unthinkable, unimaginable, horrific, and taboo that we do not even have a word for it.  It is literally unspeakable.

Nothing works more efficiently to keep uncomfortable, unenviable, hopefully ignorable pieces of society locked away in the shadows than lack of speech.  And that’s exactly where society wants to keep it, us.  Why?  We’re scary.  We know you want to keep us at bay.  We get it.  We know how daunting it is to talk about, how difficult to imagine, and truthfully, how alarming it is for you to even think to pull us from the shadows and to be forced into the light of knowledge to concede that you look just like us and in further consideration that you could, in fact, be us.  After all, isn’t everyone afraid that if our light were to shine too brightly and you got too close that your wings might melt?

Nothing makes us feel like more of a monster to be hidden from than being expected to exist only in those shadows.

It’s a simple sentiment that means the entire world to parents of lost children; we want to know that you still remember.  We know they are gone.  You will never remind us of that fact.  We live with the scars of their loss every day.  We just want to know that you remember they ever were here in the first place.  Not to make you uncomfortable, not to punish you, or push you away but for our own soul’s soothing.  For our broken heart’s sake.

My child lived.  She was a person.  She mattered. I have thoughts and memories of her that permeate every day of my life.

Sing her name unto my ears and let the beauty and magic of her spirit radiate into my heart and soul.

“Say what you wanna say and let the words fall out, honestly, I wanna see you be brave” – Sara Barelilles, Brave