Tag Archives: Family

Breaking with Tradition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I feel done with it too.”

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

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

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

 

 

 

 

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Grief Doesn’t Die

Memes and GIFs are two words that came out of virtual obscurity…literally, in the last several years and are now household words on the tongues and lips, assuming you can correctly pronounce them, of seemingly everyone in America.  Pop culture and the world of the internet have wedged their way into every detail of our lives for better or worse.

Almost daily I find myself and my husband or friends texting these quippy little quotes back and forth to each other.  Some are just either so profoundly fitting in a situation or, more likely, just incredibly funny.

Of course you can find memes, often comical or at least satirical, to suit any situation; political issues, to family gatherings, workplace frustrations, etc..  But sometimes there are those meant to speak to the deeper feelings we find ourselves dealing with when words of encouragement are needed.

As the mother of a child who has passed, I see a lot of these posted on Facebook, Instagram, and even Pinterest from others who have traveled the same road I am on myself.  And occasionally I post them too.  Once in a while one comes along that just speaks so clearly to how I’m feeling that it feels like it could’ve been taken from my own personal experience.  I guess before the modern day meme came along this duty was reserved for song lyrics sang (specifically to us) over the radio or the occasional Hallmark card – sent via snail mail, of course.

All too often though, I find that while the sentiment may align with my feelings, the execution is lost on me. A metaphorical ball metaphorically dropped, if you will.  I recently ran across one of these little posts which proclaimed that “When you can tell your story without crying, that’s how you know you’ve healed”.

meme

Now, “healed” is a relative term to varying personal degree for everyone.  While it may be true for some, no blanket explanation could ever cover such a wide ranging, deeply emotional, and profoundly personal topic. I just want to say to the thought expressed in these seventeen all-knowing little words:  bullshit.

If this has been your experience and you have gotten to this point, I am so utterly happy for you and I encourage you to celebrate the place you’re in in your journey and the accomplishment you’ve made.  Hopefully the peace that encompasses it is a blessing to you in your stay.  I can only account for my own experience, of course, but what I can say about my journey is that the absence of tears runs so much deeper than being considered healed at the lack of their presence.

I will never be healed of the loss of my daughter  Not in the conventional, physical sense anyway.  Not until my time on this earth comes to an end and am I reunited with her in spirit.  Until that time, I am forced to wander around broken, like may of us are.  Shattered like a mirror due to myriad circumstances we’ve encountered and endured.  No matter how well you glue the pieces back into place the evidence of the break remains a part of the structure forever.  The mirror may be reconfigured, but it will never not be broken.  Broken is not bad or wrong, it’s simply the sum of the experiences that have taken you to become the person you are today. With rich experiences, both good and bad, we’re all weaving the intricate tapestries that are our lives.

Does that mean that healing cannot happen?  No, it doesn’t.  For some it may.  Yet others may unsuccessfully or unwittingly chase it for the duration of their existence.  Some may simply adapt to the new being they have become.  And still many more find their new identity in the pieces of their life and spend the remainder of it romancing and nurturing their newfound brokenness, essentially becoming its prisoner.  All of this in both positive and negative, healthy and unhealthy ways.  It’s just that tears are not necessarily the barometer of health.

Not expressing tears for me, simply means I’ve become accustomed to my situation.  I am used to it.  There is no longer any shock or novelty in child loss in my life. I am desensitized to the idea of what most people would find too horrific to even entertain in their mind, i.e. the “I can’t imagines” because I have already lived it.

It’s simply another form of survival.  It’s part of how I mitigate my pain.  I have many wonderful aspects of my life to focus on, though they still doesn’t lessen the pain I feel in her loss.  I just refuse to let that pain swallow me up.  I can’t well up and break down every time my daughter’s name is mentioned or someone asks me how many children I have.  In every part of my life; my job, my writing and speaking, my social relationships, my daughter, and her death are front and center.  Not only would it not behoove me to break down at every retelling of her life’s story, but (for me) it wouldn’t honor her, either.  I just don’t let tears overtake me.  That doesn’t make me any more or less healed than anyone else.  It’s simply a personal style of functionality.

I carry on with my life.  I am happy, healthy, and productive.  I tell her story a hundred times in a row and don’t shed a single tear.  And yet, not always, but from time to time I may well up at the site of a dress hanging on a sales rack that I wish I could buy her.  Or I pause to catch my breath whenever a particularly difficult hymn is sang during church services.

Grief and pain coupled with crying, though certainly not mutually exclusive, are not necessarily married to one another either.  And with a situation so personal, so devastating, who is to say that everyone I interact with is worthy of my tears?  For me, my tears are an intimate expression of my love for my daughter, and something that I’m accustomed to compartmentalizing, not sharing openly.

When it comes to grief, of any kind, please don’t oversimplify these nuances by applying generic thoughts on such a complex topic.  There is no handbook to reference.  There is no cookie cutter for grief.  Someone may not be meeting what your expectations of grief are, but that doesn’t mean that they should adjust their expressions, barring physical and mental harm, of course.  More likely it’s an adjustment of expectations of those grief expressions, and a more open discussion that’s required for deeper understanding.

Most importantly, just be kind and supportive.  Offer a listening ear when needed, and don’t feel that it’s your duty, or even within your power to ‘fix’ them.  Just allow your friend, coworker, or family member the time, space, and respect to grieve in the way that’s comfortable for them.

I encourage you to share you thoughts on what your personal barometers of healing have been in your own life, in regard to any event you’ve experienced. Let us come together to transform
the ideas of what both grief and healing look like to the world outside our doors.

Better Than Me

“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.

photo 1

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.

 

 

 

 

 

 

 

 

A Fixable Faux Pas

As a mother, there’s not enough bubble wrap in the world for my liking.  If I could have an infinite supply to wrap my daughter in for the duration of her (very long, and very happy, I hope) life, of course I would.  Like I said, I’m a mother.  Such is not reality.  And in any case, I am aware of how that would prevent her from having as many good experiences as it would cushion the bad, I would assume.  There’s never an easy way to find the right balance of letting go and letting grow, to protection and inadvertent smothering as a parent.

Three weeks ago a call came from my sixth grader’s school that she had tripped and fallen in PE while playing soccer.  The teacher had helped her up, dizzy and pale.  Realizing there was something to be concerned about given her reaction he lead her, slowly, up to the nurse’s office and immediately called me at home.

As I sped through the neighborhood at Mach Ten, daring someone to glare, gesture, or any police officer to pull me over, I was there practically before I had hung up the phone.  My girl is a trooper.  She never cries or complains, to the point that when she was younger we would have to tell her that it was okay not to be okay, and she needed to let us know so that we could help.  A hard-headed quality that she comes by honestly.  And she’s resilient. Thanks in no small part to her sister’s terminal illness and death.

That, of course is something that I never expected her to have to endure.  Something that has most certainly shaped her young life in myriad ways, and will remain with her forever.  Haven’t we all found our children’s childhood’s shaped by unseen factors that we never planned for and most certainly hoped to avoid?  But alas, steel is only tempered by fire.  Most parents of children who have passed seem to feel a heightened level of fear, be it rational or irrational, over the loss of their other children.  That’s not so far reaching, if you ask me, merely a product of our experiences.

A trip to the sports medicine clinic, a few X-Rays, (broken radius) and a nice purple cast later we were on our way.  It was a clean break, and a routine set.  Everything was right on track, until two weeks later when another X-Ray showed the bone veering off course and not reattaching correctly.  We were informed then that the next step would be surgery.

I may have been in actual shock to hear this and the wheels began spinning in my head.  I was upset.  Terrified, and thoughts of doctor’s offices, bad news, and hospital visits with Miss Elliott flooded my memory.  We had had enough of all that to last a life time, but not with Skylar.  She was my healthy child.  I tried my best to remain calm in front of her.  I didn’t want to further upset her with my own hysteria, and I needed to rein it in for my sanity’s sake as well.

Two days later at six am we were in the hospital prepping for surgery.  I was nervous of her undergoing general anesthesia, as she never had before.  She had never had anything wrong before, ever.  I tired to hide my tears as they wheeled her back, IV in her arm, swimming in the hospital gown they put on her, and walked out to the waiting room.

I had brought a book, although I knew I couldn’t focus long enough to read a single sentence the moment I took a seat.  She was now a color coded number on a monitor in the corner of the room, to which my eyes were fixed.  It would tell me when she left the surgical prep room for the OR, and then once she was moved to recovery.  I watched that screen like a hawk.  Shaking with nervousness so profusely that a receptionist mistook my jitters for being cold came over to offer me a blanket.

In just thirty minutes, that felt like nothing short of an eternity, she was already being wheeled into recovery and the nurse was calling me back as she was waking up.  A new blue full-arm cast encasing three pins now covered her newly set arm.  Awake

She was groggy and in pain, but she was ok.  As another Tay-Sachs mom put it, “Hope she feels better soon, sad for her but happy for you as a mom she has something fixable”.

I was certainly thankful for fixable, too.

Numbing the Pain

They say it only makes it worse when you finally feel it. Addiction is a prison of its own making. A cycle that’s hard to break, to say the very least. And when loss or grief is added to the mix the welling up of emotion surrounding the issues at hand often seem to propel one further into that cycle, before if ever, propelling them out of it. Mackenzie Johnson is the daughter of a dear friend, Lynette Johnson. You may have seen some of my writings referring to Lynette in one way or another before, but you’ve undoubtedly seen her pictures. Any of the photographs of my family on this site are Soulumination photos. Lynette is the founder of this wonderful organization that provides the most lovely, candid, real-life photo shoots, free of charge for families of terminally ill children. Families like mine.

I met Lynette when living in Seattle, shortly after Miss Elliott was diagnosed with Tay-Sachs disease. A friend I’d made online, another mother of a child with Tay-Sachs had recommended I contact Lynette and Soulumination for photos since we both lived in Seattle. I found out that Lynette had traveled to the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference nearly every year, and that she had personally taken the photos of nearly every family in this community across the country, and here she was right in my own backyard.

This vibrant, caring woman who was such a bright and shining light of positivity in the lives of so many families suffering through anticipatory loss or grief itself, was stricken with Cancer. And what’s more, at the same time, her daughter, McKenzie was suffering through the depth of years of addiction and unable to come to terms with her mother’s illness.

In her own words below, Mac describes the process of finally feeling all those feelings she strove so hard to keep at bay for so long, and the impact they have on her now as she’s navigating her way through feeling them authentically and coming to terms with (and finding out) who she is.

“For years and years I wouldn’t let myself feel anything. When one drinks it shatters and suppresses all feelings, the good and bad ones. I did not realize exactly that this is what I was doing. It was a long time in the making, but eventually I found that out for myself.

All those years later when I got sober, it was the pain that hurt the most. Foreign and new it crept in and for the first time, I was powerless to stop it. Pain over the realization of what I had done over those years, pain over my mom’s recent cancer diagnosis. Pain over deaths I never allowed myself to grieve. When my grandparents died one by one, I hid away, not able to join in proper grievance, for alcohol was my comfort and my pain. My last surviving one shares in my disease. It goes untreated, and still I cannot connect.

I knew I drank differently from the very start, I also was aware that I was highly susceptible to becoming an alcoholic. I was already familiar with it because it runs in both sides of my family. Once I started drinking I could not stop. To have one or two drinks is impossible for me. Soon I was drinking every day. I noticed that I was different from most of my friends; my tolerance was greater and I had no end point. I would drink until I passed out. This kept me from visiting much or living near my family. I did not want them to be around this, to know this part of me. I also did not want them to try and stop me, and I knew they would. I made myself independent in every way so they could have no say in the way I lived my life. Until the way I lived my life would lead me very close to death.

When I found out my mom was diagnosed with lymphoma I got drunk immediately after getting off the phone. I maintain that my mom’s diagnosis got me to such a bad place that I finally accepted the help that had been long offered me. One day soon after, I woke up in my boyfriends’ bed, where I had not gone to sleep and I looked down at my wrist. It had happened again, a hospital bracelet. And no memory of it. I went to my phone and texted my sister. My recollection of that text is send me anywhere you want. It probably did not say that exactly. I then poured myself what I knew would be my last drinks. I was passed out by the time my sister had flown in that afternoon.

I was living in California when my sister came down to pick me up. We were going to a treatment center in Canada. I refused to stop in Seattle overnight because I thought I would change my mind about going, but I said we could still stop for a moment just to see mom. We stopped at our childhood home. Mom came out, very weak, sick, and bald, using a cane. She hugged me and whispered in my ear “I’m so proud of you.” How could she have been proud of her alcoholic daughter? At the time it surprised me, but gave me hope. It was not until much later that I knew exactly what she meant.

I’ve been sober for almost four years ago now, but the feelings didn’t flood in for me. They have never come easy for me. I’m still finding them today, still finding ways to express them. I still don’t like to feel them sometimes. I like to shove them away, to not show you that I can be vulnerable too, that I have feelings too now. I can cry in front of complete strangers, but not in front of my family. I struggle with relationships with those who are supposed to be closest to me, for it is them who can see the real me. And sometimes I am unsure of who that really is. Vulnerability is a scary word for me, when it should be one of empowerment, strength, beauty. But a part of me struggles and believes being vulnerable to be weak. What will happen to me if those I love see my weaknesses, my feelings, my shortcomings, struggles, my pain? They will only love me for them I am sure.

After all these years of struggling with acceptance, I know that I still haven’t let my feelings on my mom’s diagnosis fully surface. It is hard for me to listen to her talk about it. I refuse to touch her nodes when she wants to see if they have grown. I don’t know why. Maybe if I don’t then it means it isn’t real, that I can disconnect a little longer, protect myself from the pain.

She has been through treatment twice now and will more than likely venture into a third in the near future. When I agreed to my own treatment she was already in chemo. She was very weak and very sick, so sick that she vows she will never do chemo again. I honestly believe she would rather die.

I am a work in progress, I will attend meetings the rest of my life. I will work for my sobriety and sanity the rest of my life. For me there is no cure, only recovery. I spend a lot of time in the mountains now, alone or with a select few other people. I cannot describe it but it is special and spiritual for me. I also believe it is necessary for my being. I literally carry a lot of weight on my back out there, a burden I can control. I look at myself every day, my actions, intentions. I am far from perfect. I see myself do things and while I am doing them I know that they are not who I want to be. I try not to do them again. I try speak up when I am hurting, when I am sad, when I need help. It is hard. I have seen a lot of loss, from cancer and from addiction. I cannot control what my mom’s disease will do, but I can control how I act today and how I love today. I refuse to numb the pain anymore.”

Mac
McKenzie, with sister Llewelyn (center), and mom Lynette

McKenzie is raising money for her mother’s Big Climb effort to benefit the Leukemia and Lymphoma Society in their continued dedication to fund research for a cure. You can join Mac at the website below and offer your support as well.

http://www.llswa.org/site/TR/Events/BigClimb?px=1651338&pg=personal&fr_id=1510

The Remnants of a Life

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

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

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

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

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

Paperwork

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

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

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

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.