Category Archives: Motherhood

In Support of Grieving Mothers

            The internet is a dark and scary place these days.  Everywhere you turn it’s full of divisive commentary, disheartening stories, and an endlessly unnerving string of insults lobbed back and forth between the nameless, faceless entities hiding behind their computer keyboards, typing with all the courage of someone who will never face the ramifications of their actions. 

            Nothing is sacred online.  It’s a paradoxical reality juxtaposed against the scenes we come into contact with, in everyday life, face to face.  A life that for most of us over the last six months, due to the limitations of COVID restrictions has been forced to be one lived further removed from the ever-important act of human connection. 

            While some find this form of isolation to be a hindrance and struggle with their mental and emotional health, others have found themselves freer than ever to use it as a shield as they perpetuate hate and spread cultural and societal dissonance all from the safety of their computer screens.

            Surely, one would think there must be some things we as a whole can agree on.  The belief that at heart, people are basically good tells us that in general and by majority most people wouldn’t want to harm us, speak ill of us, or degrade us in any way.  It’s this belief that keeps society running as we interact with each other on even the smallest account or inconvenience; such as bumping into someone with your grocery cart or shifting over on the sidewalk to make room as you pass by another person on their daily walk.  It’s these small circumstances in which we show the basic model of humanity in consideration for others’ wellbeing. 

            I’m not sure why the comments I read on the internet surprise me anymore.  Moreover, I’m not really sure why I continue to read any internet comments at all.  It’s a predictable cesspool of tirades, insults, and bizarre trajectories.  I often wonder where these people come from, and who talks like that.  As I mentioned before, you’d never see it face to face.

            If there’s anything at all you’d assume we could collectively agree on it’s the sanctity of the depth of grief for a mother of loss.  And if you did indeed assume this, unfortunately you’d be undeniably wrong.  In a world where every individual happening is readily available to be seen on an endless loop it’s also often picked apart by internet vultures like nothing more than roadkill on the highway.

            Earlier this week Chrissy Teigen and her husband John Legend announced they had suffered a miscarriage.  Furthermore, Chrissy was far enough along in her pregnancy that she then had to deliver their son, Jack, stillborn.  In a poignant and touching act of empathy for others and in commemoration of their son’s life that was never to be, they shared their most intimate photos of themselves holding him for their first and only time. 

            It should be noted that there are organizations devoted solely to the documentation process for these families.  In the midst of their grief and pain, they meet these families in their lowest moments to make sure they capture the only photos they will ever have of their child.  It’s an act of service few are called to offer, and even fewer will receive.  It’s akin to sainthood to crawl down into the chasm of the grief of the bereaved parent to offer a light in the darkness of their dwelling.  Sometimes, it’s a lifeline as well. 

            As with all parents of loss we want to know more than anything that our child’s life mattered.  That it does still matter, as much as the living children of anyone else.  We want so desperately to say their names, to show their photos, to share them with the world just as any proud parents would.  As I sit her typing these words on what would have been my daughter’s twelfth birthday, I’m so drawn to the heart and vulnerability behind the photos Chrissy and John shared, and grateful for the illumination it provides for those who have traveled down this emotional road themselves.  It’s a road that often leaves you stuck solely in the shadows.

            Parents of loss are enigmatic creatures to those who stand on the outside of the circle.  It’s not surprising that it is so difficult to fathom the enormity of grief when you’ve lost a child, and how it permeates every aspect of one’s life, if you yourself have not experienced it.  How do you describe the array of colors of the spectrum to someone who can only see in black and white?

            What is surprising is that even in the most heart rendering situation, like child loss, is that there are those who are so far removed from the ability to sympathize with even a modicum of  care, concern, or sorrow that they have conversely been propelled into the realm of criticism and judgment.

            I was astonished to find that on pictures of Chrissy and John holding Jack from Chrissy’s hospital bed, IVs attached, exhausted and crying, but looking at him with such love and longing that so much hate was spewed at them on the internet.  Comments came flooding in.

            “Doesn’t change the fact that you’re evil.  God doesn’t like what you’ve done.”

            “Typical behavior from celebrities.  It’s all about the publicity.”

            “You willingly sacrificed your unborn child.”

            “What is wrong with you?  Are you that desperate for media attention?”

            “Um who does a photo shoot after a miscarriage?”

            It was too much.  I honestly couldn’t believe what I was reading.  I shared with my husband what I had seen.  We were both incredulous.  No person who has been forced to hold their dead child in their arms would ever say these things.  It’s because we know.  We know the heartbreak and trauma.  We know the pain and isolation.  We know the feelings of longing, and loss, and failure.  We know these photos are all we will ever have.

            I share the same photo of my daughter over and over.  She’s sitting in her adaptable chair that provided safe, comfortable support, seemingly looking right at the camera, and has on an adorably brightly colored outfit, complete with feathered headband.  I love it.  She looks so animated here.  Her cheeks a rosy glow, and on her lips a hint of a smile.  Two weeks after it was taken, she died in my arms of the terminal genetic illness she was born with.  We knew our time was fleeting and now it’s the last picture we’ll ever have. If we don’t continue to say her name and share her photos, who will?

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 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/

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 

.

Portrait of a Mother

For the one who is, the one who was, and the one who never would be,
for all my children.

I had a daughter once who died.
I have another by my side.
I had a son I’ve never known,
he who will not know our home.
A girl who’s future so small and bleak,
The one whose life is gone, as we speak.
Lit softly in my arms to rest
and nestled her head against my chest.
Her sister survives in a world below
while she looks on as we onward go.
A distant mortal memory of heart,
but one that time nor space could part.
All of her, a part of me.
Shadows of her life I see.
Dancing in and out of time
reverberating through this rhyme.
Her life I carry with me now
as I trudge along somehow.
For her sister’s sake, I survive.
I’m learning how to be alive.
Though my son was never mine,
he existed within my mind.
A figment of imagined child,
With thoughts of him my mind goes wild.
A boy we were to never know.
A son, not ours to call our own.
I love him now, I loved him then,
I’ll love him ’til my days shall end.
For all my children near and far,
for all of them, for who they are,
My heart belongs to every one,
and will until my days are done.

Put Your Mask On First And Polish Your Nails If You Want To

Disneyworld

“Don’t worry if the lawn isn’t mowed, or the laundry is piling up”, they said. “Let the dishes rest in the sink, and the trash overflow. Who cares? You have more important things to focus on” I cared. The advice people tend to give you when you’re experiencing a monumental event in life (like caring for a terminally ill child) is often fraught with good intention, but can also be just plain devoid of reality.

The ironic twist here is this: did any of these people stop and offer to come wash my dishes or do my laundry? No. Funny, how did they think we would eat our meals and what would we wear after two weeks of denying our obligation to keep up our home? To the best of my recollection, no one ever offered to mow my yard or take out my trash. No, I did all of those things.

It’s true, I had some very majorly important things to focus on, and the point of their statements was well meaning and innocuous enough, but even so, life was still happening all around me.  Why can’t the little things be important things too?  Why did they have to suddenly stop mattering to me?  The grass didn’t stop growing, our clothes didn’t just stay clean. I still had to function within my household (and Life) aside from just my role as caretaker to my child(ren).

One thing I can tell you is that if these tasks weren’t taken care of, I would have felt even more stressed out, and unstable in my life at that time. It was important to me to maintain my established routine, no matter how trivial it may have been, in order to keep going. I needed something I could count on. Something that was regular, mundane, and consistent. Plus, I needed clean clothes and plates to eat off of.  And even more shocking…I wanted a clean house!

I wanted my makeup applied and my hair curled every day. I wore heels, I put on jewelry, and I polished my nails. These were the things that made me feel like myself. These were the things within my control. This attempt at continuing on with life in general, despite my very important circumstances is what allowed me some sense of normalcy and helped propel me through my grief.

If I would have been forced to set it all aside and focus on nothing but the fact that my child was dying, we would have existed in a rabbit hole. I wasn’t willing to take us down into that dark place. Instead, I sailed gracefully above the water with my head held high, and kept my feet underneath, where no one could see them, flailing about mercilessly as I attempted to keep us afloat.

Tending to your daily obligations that exist outside of what may be the main factor in your life, does not mean that you will automatically be falling short in tending to that main factor. The two are not mutually exclusive. If our ability to love, nurture, comfort and care for others is a well, we must make sure we replenish it from time to time before we realize in a moment of crisis that we’ve completely diminished our resource.

The reason that you’re told to put your oxygen mask on first on airplanes is so that you’ll be taken care of and will still be useful to others. A mother’s instinct is to help her child first, but you can’t help anyone if you’re passed out and slumped over. You can’t help anyone if you can’t focus because you haven’t had a shower, or a hot meal, or you feel disgusted by the three inches of roots showing on the top of your head or the fact that you’re still wearing your three-day-old yoga pants with yesterday’s mascara.

As a mother in this society it’s constantly thrust upon you that in your every waking breath you must be attending to your child’s needs.  Well I believe that taking a moment to refresh your mind and body does not make you selfish, it makes you human.  It gives you a fresh perspective and your ability to care for others will be strengthened in your resolve to also care for yourself, so put your mask on first, and by all means, polish your nails if you want to.

The Sunday We didn’t go to Church

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

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

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

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

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

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

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

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

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

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

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

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

Karla

You are Not Entitled to be Happy

It’s alarming to me the way I see and hear young mothers in particular speaking about their children and their lives in general.  Whether it’s casually flippant complaints in conversation, or long rants over the internet, women seem to be complaining more and more over less and less.

As I pause to consider the possible reasoning behind these expressed thoughts, I truly wonder what the contributing factors are.  Could it be the popular portrayal of women in our society as shown through movies, television, and on the covers of countless magazines?  Is it the headlines of How to Have it All, Headlines that tell you how you can look younger/thinner/smarter/prettier/…better?  How to balance having a career as well as a family.  I fully believe these statements do only one thing the moment you read them: They tell you that you’re not good enough.  You have to have more, do more, BE more…to be happy.  They tell you that you’re not happy where you are right now.

Is it our culture’s addiction to social media?  Being constantly plugged in and turned on to incessant notifications you see that “Sally” just ate the world’s best salad, or “Randy” ran 3.46 miles (and you can even view the map).  You read these updates and suddenly wish you had eaten the world’s best salad, or you now focus on the fact that you didn’t run today.  Now you’re disappointed with yourself, now you’re focusing on how sluggish you’ve been, how much you weigh, how tired you are, etc.  Then you go and shove another donut down your throat.  All better!  Wait…you just made it worse.  And then you post:  FML.

FML (Fuck My Life) is one of those acronyms I see written far too often for trivial reasons:

“Standing in line at the pharmacy for my son’s prescription for over fifteen minutes, grrr! FML”
“My son keeps asking me to play his stupid game over and over.  Twentieth time today.  FML”
“My daughter decided to finger paint with her pudding and now I have to shampoo the carpets.  FML”

You get the idea, right?  Now it may just be me…but I don’t think any of these situations, or others like them call for spelling out on the internet that you’ve had a MINOR setback in your life today and subsequently not only feel the need to complain to everyone you know about it, but also to condemn your very life.

Yes, we all have trials to deal with, and yes, we all have frustrations that plague us.  Do things always go right in my day?  No.  Do I weigh what I want to weigh?  Who does?  Is my husband always happy with me?  Of course (insert sarcastic overtone).  Am I a perfect mother?  Absolutely not!  Just ask my tween (remember my Momster post), she’ll tell you how big of a failure I am if you ask, I’m sure.  But I recognize, as a wife, a mother, and a person that things won’t always go my way.  I willingly signed up for this job, even with that understanding.  The reason is that life is not all about what makes me happy.  I am not the center of my world.  I have two children, as well as a husband, who, in conforming to the traditional expectation of marriage, that you put your partner above yourself, makes three beings whose happiness is far superior to my own.

It’s not a resignation of happiness, being a mother, it’s a readjustment of expectations and acceptance of situational outcomes.  It’s about learning to choose happiness, as well as learning to let go of the weight of the clutter brought into your mind by those previously held expectations, or even the things we see others post online.

I tend to think of it as the “Friends With Better Lives Effect”.  When we see someone posting about their great day, the thing their significant other did for them, the vacation they went on, the food they just ate, the run they just took, and so on, we tend to automatically compare ourselves to them.  Our lives to theirs.  We want what they have.  Our deficits begin to form within our own minds and we suddenly feel that we’re at a disadvantage.  The problem with this is that it’s like hearing only part of a conversation or seeing half of a picture.  Once the rest of the story gets filled in, or the photo is zoomed out, a greater understanding begins to develop, and may not always be as desirable as you first thought.

“Thank goodness there’s a prescription to help my son.”
“I’m glad my son is able to play and asks me to join him.”
“I’m so happy my daughter is able to enjoy her pudding, and is even trying to feed herself!”

Perspective is a powerful weapon in the arsenal against unhappiness.

Never, not once have I ever posted or said FML.  Not when my daughter was diagnosed with a rare terminal illness.  Not when she went blind.  Not when she lost her cognition.  Not when she began to suffer from daily seizures.  Not when she stopped eating.  Not when she died.  Do not say or write FML.  When you do, you spit in the face of the fact that you are alive and have been granted another day on this earth.  A day not to squander, but another chance to make a difference.  Your life is a blessing.  There are many reasons for trials, and chances are that while you’re enduring them you may not understand any of those reasons.  You may never understand those reasons.  You may never fully understand their purpose, and their purpose may not even have anything to do with you.  No one ever said life would be easy.  No one ever signed a contract on your behalf procuring you an obstacle-fee existence in this world.

Do not complain about your children.  There are many of us who can never get ours back, and many more who have never had to opportunity to have them in the first place.  When we stand in front of you, in life or online, with our empty arms and you complain about the blessings that are your children and your daily life with them, you spit in our faces too.

I am sick of lack luster mothers posting about how they’d rather be out for the night shooting shots with friends at a club or on to the next party, basically anywhere but home.  How they need to get away from their kids because they’re driving them insane. How they’re bored and tired of their monotonous lives.  To these mothers I say:  Grow up.  Stop being so selfish.  Gain some perspective, if you will.  You are right where you need to be.  This life is not all about you.  Once you made the choice to bring a completely helpless human being into the world, your very own flesh and blood, this life ceased being centered around you and your wants forever.  Your happiness isn’t paramount to anyone else’s.

You are NOT entitled to be happy, your children are.

A Paralyzing Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

The Son I’ve Never Known

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

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

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

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

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

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