Tag Archives: Education

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.

Memories of a Lifelong Crusade

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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.

When There Were Two

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“Because we have ‘only’ children”, she said. I can’t remember my response now. I’m sure it was something pleasant and agreeable, but in my head I was shouting that I don’t have an ‘only’ child. I have two children. And yet, the fact remains that my not-only child, is still, in many ways forced to grow up like one. After all, she is the only child currently living in our household. But in her heart, she knows she has a sister.

What a strange way to go through childhood; knowing you have a sibling, even remembering them, but not sharing in the sibling life together. Is it what children who find out they have half siblings somewhere, or come to know of another sibling given away for adoption before they were born feel? I don’t know. All I can know is that in our house, our oldest daughter, may be our only living daughter, but she’s not our only daughter.

Even as the mother of two girls, I’ll never know what it’s like to parent them together, in the conventional sense, anyway. We were blessed to have three years and four months where our two girls shared their early lives together, but even then we didn’t have a typical lifestyle. There was no fighting, no crying over unshared toys, no complaining about the other when one didn’t get her way. And while I longed for the normalcy of that life, I still cherished the one I had. It may not have been ‘normal’ at all, but to our oldest daughter, it was. It was all she had ever known.

There may not have been moments of playing dolls, or blowing bubbles together, but there was holding hands, and reading stories, and so, so much more that made our children’s lives wonderful. Even in our youngest daughter’s death, a sense of joy and peace was present in my ever-so-resilient older daughter. A gentle understanding that our sadness was all for us, and not for her younger sister who was now free from the earthly constraints of her immobile body and mind.

I see a lifetime’s worth of compassion and tenderness bestowed on her. I see tolerance, and understanding. I see acceptance, and most of all, I see an immense amount of love.

When I hear or read of ‘typical’ mothers complaining over the blessings in their lives I become ruefully angry with them. I want to shake them and tell them to stop. To get a grip. To woman up, so-to-peak. This is not to say we don’t all complain over ridiculous ‘first world problems’ in our society and culture from time to time, and yes, we all ‘vent’ once in a while too, but when it comes to complaining about your very children for being just that – children, especially the ones you have planned for, prayed, for, wanted more than anything who are happy and healthy my acceptance and tolerance level dips dramatically. How dare you.

Narratives that sound like, ‘no sleep, so tired, two kids at once, changing diapers, spit-up food, just need a break, etc…’ frustrate me immensely.

What I would have given to have those ‘problems’. Mine sounded more like, ‘seizures, choking, inability to chew or swallow, medication administration, can’t sit or lift head, can see, can’t think, PT, OT, neurology appointments, etc.’, and the part that really gets to me the most is never did I complain about my child’s life. I would beg for years of sleepless nights just to have ten more seconds to see her and hold her in my arms again.

This is my hindrance. My own bias, and personal issue. I get that. And would I have been one of the women complaining about my ordinary everyday life had I not had the experience of living with a severely handicapped and terminally ill child? I very well may have. It’s just that now I know better. And all I can do is be thankful that in the end those other mothers have no idea. Their children will grow out of sleepless nights and diapers. They will become little people who do the usual little people things. They will fight with their siblings, and go to each other’s ballet recitals and soccer games. And here in our life we and our not ‘only’ daughter will carry on, as she plays alone, not sharing toys or splitting Christmas gifts, the unbroken focus of our attention, just the three of us, holding the memory of the time when there were two, when we were four.

Three Long Years

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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

How To Talk To The Mom Of A Dead (Or Dying) Child

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1. Don’t Tell Me How Strong You Think I Am
I didn’t choose to be strong. I didn’t pick this path for myself. Being strong is not the badge of honor you’re implying it is when you’re trying to compliment me and my efforts at not completely falling apart. I’m just doing my best to carry on. If there are others in the same position who didn’t make it as far or couldn’t handle being strong that day, don’t demean them by telling me how well I’m doing. It doesn’t change anything, for them or for me.

2. Don’t Tell Me My Child Has Survived So Long Because I Take Such Good Care of Him/Her
The cemeteries are full of people who were “good fighters”, and children whose parents took just as good of care of them.

3. Don’t Tell Me You’re Glad You’re Not Me
Duh. I wish I wasn’t in this position either. Thanks for pointing out how crappy it is, I didn’t realize…

4. Don’t Tell Me You Could Never Be Me Or Do What I Do
That’s a nice thought, again intended to compliment or praise, but the truth is that none of us ever thought we could handle something like this and more realistically still…you’re only saying this because just don’t want to imagine having to. It’s a natural defense, the inability to conceive of such a notion, but unfortunately I don’t have the luxury myself.

5. Don’t Talk About How Things Will Be “When This Is Over”
I don’t know how things will be, so you certainly don’t know how things will be. Furthermore, I can guarantee, that for any parent living through the terminal illness of their child “this” being over is unfathomable because that means their child will be gone.

6. Don’t Tell Me He’s/She’s In A Better Place
Assuming you know me well enough to know my religious beliefs, even so, please refrain from offering this useless platitude. For a mother facing the loss, or impending loss of her child, even one who believes in the idea of a better place, this does not help. What the mind can logically process the heart can never truly understand, and for that reason it will never feel ok that our children are not here with us and in our arms.

7. Don’t Tell Me You Understand
Unless you’ve lived the same life as me and suffered the same loss that I have, please, don’t ever tell me you understand. It doesn’t matter to me that your cousin, or parent, or dog died. It’s not the same. Even as another mother, your mind may allow you enough logic and reason to comprehend what the loss of a child is, but I tell you truly, you will never know what it is I feel.

8. Don’t Tell Me It Will Be Ok
You don’t know that, and for some of us it isn’t. Don’t downplay the magnitude of this trial.

9. Don’t Tell Me It’s Time…For Anything
There will be no “moving on”, there will only be moving past. Don’t tell me, based on your narrow outside view when it’s time for me to stop crying, start working, laugh more, yell less, go out, be social, or act “normal” again. I can’t predict when I’ll be ok doing those things, and you don’t have the authority to decide for me.

What you can do is:

1. Just Be There
Don’t stop coming around because it’s difficult for you. I’m sorry that it’s a sad situation. I’m sorry you don’t know how to talk to me. I’m sorry you’re sorry. I may not be best company, or the funnest party goer, but I don’t want to lose the people around me on top of losing my child just because it’s hard for you. I don’t want to be forgotten about.

2. Let Me Be, Let Me Feel
Don’t try to cheer me up or lighten the mood. Sometimes a mood shouldn’t be lightened. I need to process my feelings and get through my grief in my own way at my own pace. Sadness is a big part of loss, I won’t be happy all the time. Conversely, if I am happy, please let me feel my way through that as well. These emotions may change very quickly and I may experience them at inconvenient times, but it’s all part of the challenges of my learning to live life in a new way.

3. Tell Me About Your Problems
I still care about what’s going on in your life. I still want to be included in what’s happening around me. Yes, I’m dealing with something big, but it doesn’t meant that I don’t recognize struggles of any size. You don’t have to keep things from me because you think I already have enough to worry about

4. Don’t Ask What You Can Do For Me, Just Do
Yes, my laundry needs done, yes my grass needs mowed, yes, dinner needs to be cooked…no, I won’t ask you for any of it. And chances are that when you ask if I need anything, I say “Oh that’s ok, I’m fine.” Just bring a meal, come mow the yard, make arrangements for my husband and I to have a night out, give me a gift certificate for a massage, take me to get a pedicure, include our other children in activities. Show me that you care about me even when I can’t reciprocate.

5. Don’t Forget About Us Down The Road
When a crisis hits people tend to rally, and fast, but ever so slowly they taper off and the large group surrounding you offering support diminishes. A year or two or even more on we still need to know that you think about us, that you remember our situation, that you still care. As time goes on our trials may be different, but trials we will still have. No one ever wants to look up and feel deserted. Keep checking in with us, and keep showing us you’re still there for us.

6. Say My Child’s Name
It will not upset me. I will not be hurt. I did not forget that he/she died. Show me that you didn’t either. Say their name, it’s music to my ears. Give me a reason to talk about him/her. I need to know that’s it’s ok to say his/her name to you. I think about my child as much as you think about yours. You may have already heard the stories and seen the pictures, but please let me keep sharing his/her life with you. I don’t want to make you feel uncomfortable, but he/she is a person who existed, and I need to know that you remember that.

If you’ve lived through the loss of a child yourself, I invite you to respond to this post with information regarding what experiences from friends and family helped you, as well as what didn’t.

Miss Elliott, age two, in her mother’s arms. October, 2010.

People with Special Needs Do Not Exist as a Token for Your Entertainment

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I recently discovered an “article” (I say article while sarcastically surrounding the word in air quotes as I speak) online unbelievably titled “The Top 20 Special Needs Movie Character Ever”. One glimpse at the opening line, which was: “This list isn’t meant to offend” in an article consisting entirely of just five simple sentences, and you could easily see that this beginning statement was either a thinly veiled disclaimer or an attempt at a preemptive apology for the disgraceful content that was to follow.

This article serves to perpetuate the culturally prevalent idea in our society that applying the label of ‘special needs’ to individuals, whether they are people whom actually exist or those that have been fictitiously created, makes them novel or trivial and diminishes their contributions to our society’s idea of what makes a life important and valuable.

To set the record straight, let’s start by explaining what the term ‘special needs’ really means. Such a person is one whom has special educational requirements due to learning difficulties, emotional or behavioral issues, and/or physical disabilities. This could be a child in need of an aide in the classroom to perform certain tasks, a modified exercise in Physical Education for someone with a physical disability, even altering the environment to be understanding and supportive to the sensitivities of someone with sensory issues, or a myriad of other implementations. It boils down to making sure that an individual has what they need to succeed in their pursuit of education, and subsequently, in society.

In order to avoid funneling any more unnecessary traffic to this webpage, I will refrain from posting the actual link to the article here. I will however, post their list for the purposes of this discussion, which is as follows:

1.   Rosie O’Donnel in Riding the Bus with my Sister
2.   Leonardo DiCaprio in What’s Eating Gilbert Grape?
3.   Sloth from Goonies
4.   Billy Bob Thornton in Slingblade
5.   Hanson from Scary Move 2
6.   Tom Hanks in Forrest Gump
7.   Kristen Stewart in The Cake Eaters
8.   Jon Heder in Napoleon Dynamite
9. Warren from There’s Something About Mary
10. Cuba Gooding Jr. in Radio
11. Dustin Hoffman in Rainman
12. Booger from Revenge of the Nerds
13. Molly Shannon in Superstar
14. Sean Penn in I Am Sam
15. Hank from Drop Dead Gorgeous
16. Adam Sandler in Billy Madison
17. John Malkovich in Of Mice and Men
18. Elizabeth Shue in Molly
19. Juliette Lewis in The Other Sister
20. Robin Williams in Jack

The first and most obvious issue I take with this list is the fact that many of these examples are not even ‘special needs’ individuals, rather they are merely eccentric characters; goofballs, underachievers, and those who are just plain socially awkward. By lumping all of these characters in this article together as ‘special needs’, the writer has clearly reduced the idea of being a special needs person to that of a bumbling, idiotic, low level of intelligence, barely functioning ‘retard’, a term so often used in our culture, offensively to describe and make-fun of individuals such as those on this list. The idea that a list like this is acceptable as a form of entertainment to be mindlessly glossed over is atrocious.

The second issue I take with this is the fact that they are listed as the “top” characters. The top of what? In what category? For what reason? Are they the funniest, the stupidest, most ‘retarded’? What is the gauge by which these characters have been measured? What exactly are we to ascertain from this list? The writer, himself never explains his purpose in his five sentences. He almost leaves us to decipher the meaning of it for ourselves. If it weren’t for the tags listed at the end of the article, one being: “movies about retarded people“, you might have excused it away as nothing more than a compilation. This information, however, tells us the sad truth behind his unfortunate intentions.

This article is offensive. On behalf of the over one-billion people living with various forms of disabilities across the world, some cognitive, some emotional, some physical, and so forth, I take offense. I take offense for those who cannot speak up for themselves and act out against any of the deplorable stereotypes that continue to exist in our culture that tell these people they are not ‘normal’, that they are in fact, trivial, novel and something to be made examples of and discriminated against as a form of amusement for the rest of society.

A person who watches these movies, and reads (or makes) lists like these with the intent to laugh at the individuals who actually do have special needs, is someone lacking the most basic of human components; those of empathy and compassion toward the his fellow human beings. I pity these people, for they are truly missing out on a large portion of the purpose of life, and in reality, they, themselves are the ones with nothing meaningful to contribute to the human condition. Surely such a shallow existence must be novel and trivial in and of itself.