Tag Archives: Child Loss

Symbolic Mourning

I couldn’t be more thankful to Rebecca Chappell, whom I’ve (unfortunately) had the pleasure to get to know over the last year through the National Tay-Sachs and Allied Diseases Association, for sharing her story of Symbolic Mourning after the loss of her beautiful and precious Colby earlier this year.

Rebecca and Colby

When my son died, his absence felt almost tangible. There is of course the absence of his physical presence, but because of his special needs there was also the absence of the machines and the people that helped us provide the extra care that made his life possible. Colby was diagnosed at eight months with Canavan, a degenerative neurological disease, where he would never develop skills beyond that of a 2 month old. In addition to always having the needs of a newborn, he also needed a suction machine to clear his airways, a stander to prevent problems to his muscles and joints that would come from not being able to stand and walk, special chairs that held up his head and kept him from falling sideways, a nebulizer that helped him breathe. He required constant attention.

While the reality of having people and machines in my home and the constant demand of a completely dependent child were not something I would have chosen, they had become my way of life. Now that they were all gone, the house was empty and my life had changed overnight. I felt lonely and without purpose. My arms that had constantly held Colby were now empty and the pictures from his life didn’t feel like enough to fill such an enormous void. I wanted to scream at people when they asked how I was doing, “my son just died, how do you think I am doing?”  I also felt offended when people didn’t ask or didn’t know. I began to feel that I needed some way to remember him, to share him, to literally mark myself as the mother of an angel.

As I struggled with feelings of grief that I didn’t know how to express, I realized that what I needed was to “mourn” my son. In years past people would go into “mourning” after the death of a loved one. They would follow social conventions of the time, including wearing black for a designated period. This allowed the person that had lost a loved one to express their grief, but also let others know so they could offer condolences.  Today most people don’t wear black or even have a time set aside to mourn. It left me feeling like life is just supposed to go “back to normal”, which of course it never would for me. Every time I left the house or did “normal” things I felt like I was betraying Colby’s memory. A part of me died with my son and I could not return to life as if he had never existed. I decided what I needed was a symbol of my grief, a symbol that I was in mourning.

I wanted something to represent my grief, to remind me of the special bond between Colby and I and give me the opportunity to talk about my son all at the same time.  My first thought was a tattoo, but depending on where it is placed it wouldn’t be as visual as I had in mind. Some people are able to wear or carry something that belonged to their loved one, but Colby didn’t have a lot of things that could be used for this purpose. I also researched different types of jewelry but nothing really fit my image of what I wanted. So I decided to put together my own bracelet, which itself ended up being a therapeutic process. I wanted it to be mainly black as a traditional representation of mourning, so I purchased some black beads and a black ribbon to string them all. Next I found charms that would remind me of him; a heart, a prayer charm, a dragonfly, the first letter of his name, his birthstone, and finally a tiny frame for his photo.

Creating my mourning bracelet has had the desired effect for me. I am proud to wear it. It is my outward symbol that while my life may have changed, Colby is not forgotten. The beads softly click together as I move my arm, quietly paying tribute to my angel son as I go about my day. More than one person has mention that it is beautiful, and one mother, who had also lost a child, even said she would buy one from me it I wanted to start making them. The void he left is still enormous but the heavy feeling that I am not doing enough to remember him has been lifted and no matter where I am I can look down on my wrist and see him smiling back up at me.

Bracelet

#Problems

Have you seen the recent cultural trend of people taking to social media to complain about their problems, which are actually just minor inconveniences? #firstworld  (e.g., they spelled my name wrong at Starbucks, I really want to wear white pants but it’s after Labor Day, my cell phone is dying but my charger is all the way upstairs…etc.)  Well, I had a big one yesterday. I stood in my kitchen and thought, “I don’t have enough Halloween decorations in here to coordinate with the rest of my home. I need to get to the store today to buy a few more things –stat”.

Admittedly, I have a lot of these moments. It’s easy to become so hyper-focused on every minute detail of our polished lifestyles that we actually forget what a real problem is. But is it ok to care about frivolity too? I have had my share of problems. Actual problems. Problems other’s aren’t even willing to try to comprehend because they’re so earth-shatteringly terrifying, but standing in the middle of my kitchen concerning myself over decorations may not be a ‘first world’ problem at all. I mean, it is, but what if it’s actually also a tell-tale sign that I’m doing ok? What if it means that I haven’t allowed myself to be so consumed by the grief I feel over losing my child that I can actually still function in a normal capacity? What if it means that I’m doing alright?

I hope it does. I’ve seen others lose themselves as they follow their grief down the rabbit hole. I’ve seen them spiral into oblivion as they, step by step, move away from society, family and friends, and even their lives outside their own mind. What’s worse, is when someone becomes so consumed by their own misfortune that they become immune to recognizing it in others and lose their capacity for compassion.

I think that when an issue occurs is when you start to take your ‘first world’ nonsense and see is as an actual problem. Not having enough Halloween decorations is not only not a problem, it’s not even a minor inconvenience. It’s just a testament to my following suit of the consumerism mentality of my culture and my buying in to the idea of materialism itself. Whether they’re ‘first world’ or third world, when an issue in your life becomes so polarizing that you can’t see past it and you fail to pick up on the hardships faced by your fellow man, you begin to lose your humanity.

Last night I had dinner with a group of women from church. It’s a dinner we have once a month at various restaurants around town. A time to try new places, socialize together, and get out of the house…alone (which can seem like a big deal when you’re a mom and wife). We had a new member in our group. She was excited to be there because she “never gets to go out to restaurants”. And she had never been out to a girl’s night before. She’s pregnant and has no support. The baby’s father is not involved in her life. She lives with a friend, for now. She had another child that was taken away and adopted out permanently a few years ago. She just got out of prison. She has no car, no job, no skills, and no GED. She doesn’t qualify for most of the assistance programs available because of her imprisonment. Her mother is also in prison, is addicted to drugs, and is not even emotionally supportive of her. She had wandered into our church a few weeks ago spontaneously to ask for prayers. In these few short weeks she’s been attending services, Bible studies, and was even baptized. She told us at dinner how she feels that God is giving her a second chance with this baby and she desperately wants to do things right this time, for his sake.

She asked if we would be willing to come to the hospital when she has her baby. Here she was asking a group of practical strangers to be with her because she literally had no one else. It was evident throughout the dinner as she divulged the details of her life that she just wanted to talk, about anything. She just wanted someone around her to sit and listen. To see her, to hear her, to care. Here was a very young woman with no one, grasping at straws, reaching out to any of us asking us to care about her. And I think I don’t have enough Halloween decorations? That was my big issue of the day? We go out to dinner whenever I just don’t feel like cooking, and she hadn’t been out to a restaurant in who knows how long. I felt ashamed in so many ways for the things I complain about in my privileged life, but I also felt pangs of sorrow for her, and in such, knew that I was able to sympathize with her. I may have suffered an inconceivable personal loss in the death of my daughter, but my experience has not hardened me. It has made me more sensitive to the plights of others. I have not lost my humanity to my own sense of grief and sorrow. Only that would be a real tragedy (#problem) in my life.

Growing Up Is Hard To (Watch Them) Do

Benson 11

“Mom, it’s embarrassing”, she said as we stood in the driveway. Spoken in her most astute voice with a dead-pan expression of resolve across her face that told me she meant what she was saying. She never minces words. “Ok”, I relented, begrudgingly, but unselfishly. I knew it was embarrassing. She’s in sixth grade now. She’s eleven. I get it. And the truth is, I want her to be independent; maybe not as independent as she wants to be, but I want her to learn to take care of herself, to speak up for herself (who am I kidding, she’s got that one down pat), and to explore the world. I’m just not ready to begin letting go and letting the world get ahold of her, that’s all.

The bus stop is only one and a half houses away on the corner of our street. I walked through two neighborhoods, and across the busiest street in town on my way to school when I was her age. I wasn’t offended, I would be embarrassed too if I were her and my mom was still walking me to the bus stop…all of 150 feet away. When she was younger I was the mom that would call the house of the sleepover to make sure she was “behaving herself”, but in reality it was because I needed confirmation that she was ok while out of my sight. I just don’t know how to not be there with her. How do I stop hovering so she can fly? I suppose that question is old as parenting itself.

As children grow they slowly become less and less under your care and guidance and more and more in control of their own mind and actions. I want this for her. I want her to feel secure enough to be able to make decisions for herself. I want to nurture that strong sense of self that tells her she is her own person who can be accountable for her own life. The kind of nurturing that instills the values I want her to adopt as her own, but gives her room to actually test them out in order to adopt them.

I want to be her best friend, not some overbearing annoyance. I want to give her room to come to me when she needs me, and not have to struggle to run away just to take a breath for a moment of solace away from me. I know that all parents have to find a way to keep that fine balance as their children become young adults, but for some reason I think parents of child loss generally have a more difficult time finding and keeping that balance.

When Miss Elliott was alive she needed me every second of every day for her every conceivable function. And not only are we mothers and fathers of severely disabled, terminally ill children in such high demand in caring for our children, but inherently we suffer their loss. Suddenly our established routine of being so needed diminishes drastically when that happens. We have suffered the worst nightmare a parent can have; our child has died and our responsibility as a parent (to them) is over. How do we move on with our other children? It’s an otherwise illogical thing to try to process, when generally one is once a parent, always a parent.

I’ve discussed this topic at length with other mothers in my position, most notably in our Women’s Group at the annual family conference for parents of terminally children of lysosomal storage disorders. One of two outcomes seems to transpire in each family’s loss. Some parents become hyper-protective of their other children, while others become disengaged, and in some ways even push their children away in an effort to distance themselves from the potential of yet another loss. In either scenario we’re acting on a vain attempt to try to control the future, but one that is ultimately born of the experience of love and loss in the first place.

You see, grief is something that we parents of loss live with, and will live with for the remainder of our lives. It affects every facet of and person in our lives as it is transmitted through us. It is a constant struggle to recognize, rationalize, work though, and remedy the ache in our hearts as it applies to those facets and those people in order to heal and not to further harm them, including our other children.

Children don’t ask for any of the circumstances they endure as children, be they good or bad, but they certainly do deserve parents who do everything in their power to prevent as much of the latter as possible when it applies to their growth as healthy human beings. And they definitely deserve parents who do not contribute any negativity or hindrances to that growth. I can’t ask my daughter not to grow up. I’ve already lived through the alternative. My responsibility to her is not to make her my pet, something I own and control, it’s to grow her into the amazing woman I know she is on the path to becoming. To help her realize her potential, and do everything I can to help her develop the tools necessary for successfully navigating life, both the triumphs and challenges. Ideally with a guarded, but not hardened heart.

When There Were Two

Sisters

“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.

Strength is not Enough

Time is slipping. I’m not really sure how it can move at such an accelerated rate, yet seem to progress so slowly all at once, but it does. It moves on its own accord. You can’t alter it. You may try, but only in vain. Earlier this month, August 6th to be exact, I was tidying up the house for the evening, sipping some coffee, and heading up to bed-book in hand, to read for a bit, when suddenly a thought hit my like a truck: yesterday was DD. YESTERDAY. For the first time in six years, since its inception, I had missed it.

This was a win.

Diagnosis Day (DD) is when my world fell apart. It was when I learned our precious Miss Elliott was being consumed from the inside out by the ravenous genetic monster known as Tay-Sachs disease that, while first would rob her of every basic form of human functioning, it would also eventually kill her as well. August 5th, 2009 was the day our world stopped. This was the point of no return. At that moment, I would never be who I had been for the entirety of my life pervious to this point, ever again. A change had occurred. I was a new person, in a new life, living a bad dream called Reality.

For years, even since her death, I’ve dealt with the grief and anxiety of that day preemptively as it approaches. It’s like watching your life on an old movie projector. Jagged scenes flash intermittently into your memories and the feelings behind them are so real they’re palpable. You wish you could look away, but you can’t so you squint through half-closed eyes between your fingers instead and try to take in as little as you can handle at a time. Knowing you’ve survived it already doesn’t make it any easier to see again.

This year it didn’t happen. I missed it, completely. I was ecstatic. Grief didn’t consume me in the days leading up to August 5th. Normal life did. I was happy to feel that way, normal. Happy not to feel I had been gulping water instead of air. Happy not to feel the days ticking off the calendar just to get through them. Happy because I had been feeling this way a lot recently. It was energizing, reinvigorating.

I haven’t felt like myself in a long time. I’m tired, irritable, overwhelmed, stressed out. And it’s not me. Could I be anemic, have trouble with my thyroid, something else, I wondered. A visit to the doctor and quick blood draw tells me I couldn’t be healthier. My levels of everything couldn’t have been more precisely in the middle of the normal range…on everything. Great.

So what then?

Being a mom is hard. Being a wife is hard. Being a daughter, daughter-in-law, sister, aunt, friend, coworker, Christian, etc. is hard. I’m hard on myself. I expect a lot out of me. I absorb all the stress like a sponge. I expect to keep going, keep moving forward gliding along so gracefully that no one can see my feet paddling furiously below the surface. I put a lot of pressure on myself to make everyone else feel happy by being polite, sucking up their crap, putting my own thoughts and feelings aside to seem agreeable, showing up for everything, saying yes to it all, entertaining delightfully in a spotless home, all with a freshly baked pie and compliment ready to offer up to the next person I interact with. And all I’ve succeeded in doing is feeling like I’m losing myself for everyone else’s gain.

Losing Miss Elliott was hard. It still is hard. And when you feel like you have this image of I’m doing great to uphold, it’s the kind of pressure that builds up until the final straw drifts down on top of you and you break.

In talking this out with one of my few closely trusted friends she sent me a message that I really needed to hear:

“You know, you don’t have to be “strong” and no one expects you to be. You get to freak out, cry, scream, be sad and be pissed off. It’s your love for your family that keeps you moving forward, not strength. I think people confuse strength with determination. You are determined to live your life and carry on for Elliott, Skylar, and Loren. You are choosing to move forward out of love for your family and you do it with such grace. That’s not being strong. That’s being a mother. That’s being a wife. That’s being you.”

I needed that so much. She wouldn’t see me as less valuable if I had a less than stellar moment. Why should I see myself that way? What I don’t need is to try to live up to a false sense of strength that’s my own creation. It’s exhausting, it’s stressful and eventually, you’ll break. I couldn’t be further from perfect. I need to do a better job accepting that. I think everyone else would accept that of me, but somehow it’s harder to come by that acceptance of myself so I’m working on it. I’m taking care of me. Of my body, of my mind. I’m letting go of the hold that all those old obligations had on me. Of all the expectations that I’ve felt like were there from others, and imposed on me by myself. Of my difficult relationship with grief.

A date on the calendar doesn’t have to rule my emotional well-being. August 5th came and went without so much an acknowledgement of it. I miss Miss Elliott every day. I will always be sad over her loss. It will most likely always be hard for me to deal with, but like my friend said, and even if I stumble, have set backs, or don’t always handle everything as gracefully as I should, I “choose to move forward out of love for my family”, “That’s being me”, and I’m determined to carry on.

Three Years Four Months and One Day

Benson 6

That’s what June fourth will be this year.  Three years, four months, and one day since Miss Elliott died.  Which also marks one more day than she was alive on earth.  She will now, and forevermore have been gone longer than she ever was here.

It’s hard for me to stomach.  Hard to accept as a mother that my child is gone from this life forever.  The more time passes the more surreal it becomes.  Sometimes I conjure up memories of our life with her and they seem like they should belong to someone else.  Being in the throws of her life, consumed with the medical fragility of her tiny body and the severity of her condition was life as we knew it, but now, having been so far removed from that life for so long that in many ways, although it still feels like yesterday, in others I can’t recognize it at all.

And the nightmares I have because of her death still haunt me today.  For some reason my brain has decided to manifest completely unnecessary and inaccurate guilt associated with her life, and my care for her as a mother.   I dream repeatedly of her existing somewhere in the background of our lives and I have forgotten about her.  Forgotten to feed her.  She is starving.  She is sad.  She is lonely.  She is silent.  And she can’t do anything about any of it.  I fail her over and over in these dreams.

The truth is that in her lifetime I was never without her. She lived cradled in my arms.  I fed her five times a day.  I massaged her arms and legs to help her circulation.  I bent and stretched them to keep her muscles fluid.  I bathed and dressed her every day complete with a matching bow in her hair.   I sang to her.  I took her everywhere with me.  I loved her fully, and unconditionally until the day she died.  And I love her still.

I think these dreams come to me as a symptom of my guilt over her death.  As powerless as I was to stop Tay-Sachs Disease from ravaging her body, and as certain as her future was, I still, as a mother, could not accept that my child would die.  Of course, logically, I did understand it and knew it would happen.  But in my heart, the acceptance of this hard-fast fact has never come to be.

When we wrong our children, when we fail them we’re usually given the chance to explain or make it right at a later date.  With Miss Elliott gone, I do not and will not ever have the opportunity to do so.  So many times my worry takes over and leads to the entrapment of guilt.  Guilt that what if I didn’t feed her enough, hold her enough, massage and stimulate her muscles enough?  Was she hot when I was putting a blanket on her?  Cold when I was taking one off?  I will never have these answers.  Only wonder and only worry.    I’ll never have an opportunity to right my wrongs or do better for her.

The day before Miss Elliott was born I looked at Skylar and said “It will never be just you and me again after tomorrow”.  How I hate the thought of the false security of this statement now.

When I look back on the memories of the years she was with us sometimes I don’t recognize those people.  They seem so foreign.  And it saddens me until I remember all that who we are today is because of who she was.  She was a little girl with a perfect soul and a big message about the beauty and importance of every life, no matter how short, no matter how small.  I will be forever grateful to have been her mother for the three short  years she was here.

The Victory of Love

I laugh, I cry, I scream, I fly, I sink, I swim.  It’s all the same.

I twist, I shout, I turn about every time I call your name.

And on deaf ears my words do fall, and off cracked hearts me feelings roll.

Into darkness, depth, despair, where love and pain are a kindred pair.

A gruesome scene, torn all to shreds; the elation within a mother’s head.

What once was so is so no more, and there she stands at fate’s closed door.

The hounds have come and named their price.  Her bounty ransomed, stolen yet.

Upon her knees her body falls.  Darkness kisses her eyes, now wet.

She hangs her head low in her hands, and rages at Satan’s evil demands.

For in this world she may be scorned, but soon, in death she’ll be reborn.

A fury lights within her soul and through the night in haste she rides.

When at last the light draws near and the realms of heaven and earth collide.

The battle done, her prize is won, and it in spirit she reclaims.

For through the pits of hell she’s come and nary a tinge of charring remains.

Though the lamb was slaughtered here not even death can cause her fear,

for all of Satan’s grief he hurled, the blood was shed to cleanse the world

That which by faith we onward go, for love is the victory we know,

that overcomes the world.

A Note on (Bereaved) Mother’s Day

Miss Elliott and Skylar, to whom I’ll always be, “Mom”.
Sisters

I’ve only recently learned of International Bereaved Mother’s Day, and I have to say that my first thought was that I was not impressed.  After all, to be a bereaved mother you must be a mother first.  The one denotes the other.  So secondly, (here in the USA at least ) can’t I just celebrate my motherhood on the same day as everyone else?  What I need is for my child, my daughter to be remembered and celebrated everyday, not on some pronounced day of solemn reflection that further singles me out from the rest of the mothers.

If you are not familiar with the history of Mother’s Day, you might be surprised to know that it was not invented by the greeting card industry to sell fifty million five-dollar one-liners once a year.  It was actually invented by Anna Jarvis in 1908 to celebrate her own mother, Ann who though she gave birth to somewhere around twelve children, only four of them lived into adulthood.  So the purpose and focus of this day was actually created to honor Anna’s mother due to her bereavements in motherhood.

I should point out that I do understand that healing aspect of this International Bereaved Mother’s Day of being given one more outlet to be able to freely acknowledge your deceased child.  As the mother of a deceased child, society can make you feel that it’s not socially acceptable for you to talk openly about your child the way your friends and relatives talk about theirs.  That it’s actually taboo for you to wish to mention your own child in public merely because he or she has died.  But I personally still felt that I didn’t need any more segregation from myself and mothers of living children.  I felt that I would celebrate my motherhood along with everyone else, on Mother’s Day, as it was originally intended

Which is why, as I dug further into my investigation of International Bereaved Mother’s Day I was happy, if shocked to find that it is actually a temporary movement intended to refocus the true meaning of the original Mother’s Day, the acknowledgement of the bereaved motherAs stated on the official website for International Bereaved Mother’s Day; “If you have experienced the death of one or more of your children, struggle to conceive a child or are unable to fall pregnant at all, this day can often bring up feelings of isolation, unworthiness, pain and sadness. Much of society has forgotten the true meaning of Mother’s Day and fails to support and recognize all true mothers.”

No matter the tangibility of her child, a mother is one of heart and mind first, before she is ever one of physical presence.  A mother’s journey begins long before she gives birth, and it doesn’t end when her child dies.  If you know a woman who is a bereaved mother, please take a moment to be a friend and neighbor to this woman.  Open your heart to her.  Acknowledge the child in her life that you cannot see every day.  Speak their name.  Tell her you remember them, or ask to get to know them.  Ask to hear their stories.  This is the kindest and most compassionate thing you can do for her.

To learn more about International Bereaved Mother’s Day, please visit: http://carlymarieprojectheal.com/

Tales of my Dead Daughter

Soul Pic

I was recently having a conversation with someone where I referenced my daughter and used the line; “before Miss Elliott was dead…”.  I instantly recoiled at the chastening sound of my words and began to feel as though I should apologize for not using a euphemism like the word passed instead, as society has taught us all to do in order to act mannerly.  Other than perhaps catching her a little off guard with my bluntness, I don’t think the person I was with minded at all.  And then I was annoyed at myself.

In a situation like this why would I let the feelings of others (even those only perceived or imagined) make me feel guilty over my word choice?  Was she any less living?  As if to say she had passed and was not just dead would somehow be kinder or less emotionally charged for the person hearing the words?  No matter how I put it, I still have a dead daughter.

We all use euphemisms from time to time either out of respect to those we are speaking to or to gird our own feelings, but when should we refrain?  When should we realize that to use them actually downplays the significance or magnitude of the event and that we should instead just spell it out frankly?  Give it the credence it deserves.  Does not a dead child demand such an overture?

Be thoughtful, but also be bold.  Don’t shrink away from the intensity of the situation just because it makes you uncomfortable.  Recognize it.  Respect it.  Embrace it.  Show those whom you are speaking to that you understand the level of importance this event holds in their life and honor it with your words.

I Don’t Cry For You

Soul Pic

I cry for me.

I wear my smile like a garment.  I take it off each night and carefully fold it up, setting it beside my bed.  I gently pack it into its box.  I wake and lift the lid to check and see if it’s still there.  Every day it is.  I rise, smooth it out, repair the fraying edges and put it on again every morning.  In the solace of the evening I allow myself to feel the weight of my empty arms.  To acknowledge the burden of a heart that will never numb.   To choke with each rise and fall of my chest in every breath I take.   And to smear mascara across my wet cheeks when I blot my eyes. But all day long, I smile.

I cry for me.

Because I miss you.  Because I love you.  Because you’re not here with me, and you never will be again.

In two weeks I’ll be at a conference with most of the children like you who exist in this country.  Families like ours.  Mothers, fathers, children all around who live the life I live.  I will wear my smile.  I will carry my head high.  My clothes, my fingernails, my hair, my eyelashes will be perfect.  I will look “put together”.  I will both laugh and lament.  I will both console and commiserate.  I will not hold those children.  I will be offered the chance to do so with each and every one passed around by mothers who are proud, or worried, or hurting, or desperate to connect who will speak to me and offer but I will not hold their children.  I am scared.  It hurts too much.  I know my limits.  It is the only time my smile would break.

And I would cry for me, because of you.

I cannot let that happen.  I have to be very careful with my smile.  I have to wear it every day.

The 37th Annual NTSAD Family Conference will be held April 16-19, 2015 in Reston, Virginia.  Families will gather from all across the USA and beyond to learn about research, support one another, grieve together, and just to be with those who truly understand what living life with a terminally ill child means, no explanations or apologies necessary.   To learn more, visit: http://www.ntsad.org 

.