Tag Archives: Motherhood

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:

I Want to Say I Want to Hold Your Baby, but I Don’t

Me and Miss ElliottBeing thirty years old, I’m smack in the middle of that time in life where everyone around you seems to be having a baby.  Friends, family members, PTA moms, the checker at the grocery store, you name it.  Everywhere you look, babies, babies, and more babies.  Babies make people happy.  They calm, and refresh, and inspire people.  They represent purity and an infinite world of possibilities.  Babies haven’t been around long enough to gather any of the stigmas we apply to other people we meet, grown people, that is.  They’re just new.  There’s nothing you can not like about them, and for that reason, everyone likes them…because you’d be crazy not to.

Social protocol calls for fawning, squealing, and cuddling babies when someone offers you the chance to hold one.  New mother’s, old mothers, god mothers, one-day mothers, never-going-to-be mothers, aunts, honorary aunts, and any other female incarnation you can conceive of, they all fawn over babies like twelve year olds (them too) at a Justin Bieber concert.  Only a stone-cold monster of a woman wouldn’t embrace the chubby thighs, fuzzy heads, and drool-filled kisses that come along with holding a baby.

Unfortunately, this is exactly what I’m afraid I look like, time and again, when someone offers up their most prized creation, beaming as though it had just taken the blue ribbon at the county fair, and rightfully so.  They should.  They made a person, after all, which is no small feat, and better than their Aunt Betty’s award winning peach cobbler any day.  They have every reason to want to share that joy with those around them.  They’re not the weird ones, it’s me.  I am.

“Would you like to hold her,” they ask.  “Oh that’s ok,” I  pleasantly and quickly reply.  Who says that?  Who says “no thank you” when someone offers up the opportunity to hold their newborn baby?  Well, I do.

Why?  It’s simple: grief.  It should really be spelled with four letters, that word.  It would be so much more appropriate.  It’s hard to explain to any of those new overly indulgent mothers, and honestly, I never want to rain on their parade by doing so, that my arms never feel emptier than when I hold a child who isn’t my Miss Elliott.  I just can’t handle it emotionally, because every time I close my eyes and imagine her there, I open them to find a heap of disappointment softly cooing in my lap.  Grief is; sitting there in front of a new mother trying your best to keep a smile on your face while you’re dying inside, living your cruel personal reality: you will never hold your child in your arms ever again.

Once, at church, a grandmother threw her new granddaughter into my lap before I could come up with a polite or at least viable reason to decline.  I braced her head against my chin and wrapped my arm around the back oh her neck as she transferred her to me.  When she wiggled her way out of my grasp and turned her head away, I realized that I didn’t even know how to hold an infant without Tay-Sachs anymore.  This child could move one her own.  She could support the weight of her own head.  It was instantly overwhelming.  I was very close to having a panic attack.  As my throat tightened and my eyes welled up I looked at Loren and told him to take the baby off my lap “right now”.  I bolted for the bathroom to cry in peace and solitude.

Another incident occurred last summer, when a close friend had her baby, I went to the hospital she had given birth at, the next morning to give her a present.  It was a nice visit, but she was overly apologetic that the baby was eating and that I couldn’t hold her while I was there.  “Oh that’s ok,” I said again, and we went on with our visit, but as I left I was just relieved that I had dodged the bullet.

My friend had never known that I felt that way (although she will now and so may the family from church).  It’s not an easy thing to explain to others.  Furthermore, it’s not an easy feeling to live with.  Often, it’s hard to see it coming.  I call these moments ‘snapshots of grief’, those instances when grief jumps up and overwhelms you before you realize its cold bony hand is gripped around your throat.  It’s an invisible pain that has a way of casting a shadow over seemingly innocuous occasions.  Creeping up and striking without so much as a moment’s notice.  It’s unnatural, to be perfectly honest, but so is losing your child, and that’s the dark and isolating nature of grief itself.

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.

True Confessions of a Momster

“Why are you so obsessed with me doing math?” my oldest daughter belted out in a huff with all of the dramatic tween nuances she could muster, as though she were Regina George from the movie Mean Girls.  Couple that with the email I received from the school district letting me know that it was time to register for kindergarten (for my nonexistent five year old, thanks for the reminder on that), and it was really a win/win morning for everyone around here.  Dad should be thankful he had already left for work.

I’m a momster, at least that’s what I’m calling myself today since I had the audacity to tell my tween that she has to do things like:

1. Speak to me in a respectful manner.
2. Follow my directions.
and (cue gasp)
3.Clean her own room.

Oh yeah, and things like doing homework and not spending too much time on electronics.  What a crazy world I make her live in!


Momsters Unite!  It was a rally cry from a friend after posting about my morning on Facebook.  Some other momsters relayed their horrific doings to me on the site.  One friend actually made her seven year old son…are you ready for this?  Take a shower!  Now, I ask you, why has no one called CPS on this woman?  Another’s three year old dubbed her the ‘meanest mom ever’ (is there a trophy for that?) for taking his toy away after chucking it at her from the top of the stairs, and her five year old told her it was the worst day of his life when she stopped him from sliding down the iron banister of said stairs while wearing his rain boots and a life jacket.  She did however, acknowledged she was evil for this.  I’m glad she could see that, because truly, her behavior was obviously atrocious.

How dare these woman, how dare they!  Who do they think they are?  What gave them the authority to act like a, a…MOM.  Oh, wait…

Kids are jerks.  Egocentric little jerks who can’t see past the tips of their own noses.  Everything is unfair when you’re a kid.  You’re short, you have to go to bed early, you have to go to school, you can’t eat candy whenever you want, you’re forced into the modern day form of slave labor known as chores, and you don’t get to choose what show the family watches on TV (and for some reason, unknown to you, your parents never choose the Disney Chanel).

Back to my morning.  One dead, and one thinks I’m soooo utterly stupid and mean. I stood there feeling like the world’s biggest failure as a mother in the drizzling rain, watching my daughter’s bus pull away as her tears streamed down her face…because of me.   Yep, I’m really relishing in the joys of motherhood these days.  I don’t wish on her having to go through this one day as a form of punishment for her childhood self, but, as trite as it would sound to her today, I do wish that when she inevitable does deal with circumstances like this as a mother, that in those moments she really begins to understand first hand that a mother’s love even entails rules and consequences for her children.

Deep breath.  I’ll try again at 3:40 this afternoon.

On a serious note, I will be forever grateful that my intelligent and precocious child has the gumption to speak up and speak her mind.  I think that will forever be a valuable personality trait and one of her biggest assets.  One that I never want to squash.  I like to encourage her to do so, although sometimes I think that’s where I’ve gone wrong myself.  I have always wanted to make sure that she is respected as a human being with her own mind, and as such, have always allowed her to have a ‘say’ in things…maybe a little too much.  Could I so have overdone it in trying to let her have her voice and opinions that she now thinks her vote counts for one third (along with her father and I) in this house, or is it just the snarling tween hormones that are always smoldering beneath the surface that flare up in times like these?  All in all, I give praise to my daughter for having such ‘normal’ problems in life at the age of almost ten, considering the death of her sister and all that her short life has entailed.  So at any rate, good for her for being so strong willed and bold (she does come by it honestly), but seriously kid, know when it would behoove you to pipe down and say just “yes mom” instead!

If you did, you might still have access to your video games this week…

On Love

I read an article recently posted by a friend that made reference to the romantic intoxication of letter writing as a form of courtship.  This peaked my interest and conjured up feelings of my own nostalgia, as I am still in possession of the enormous stack of love letters my husband wrote to me the entire second year of our courtship.  We were only teenagers at the time.  He lived three hours away and sent, on average, one letter per week.  With no internet access between the two of us back then, and very limited availability for phone contact, these letters were our connection to each other.

He was away training to become a wild land firefighter with the U.S. Forest Service.  His days were spent on the smoldering mountain tops of Washington State with a Pulaski and chainsaw.  Dressed in his government issued green and yellow FR gear, battling the heat of the sun and the tempers of the crew members, as well as the fire itself.  I was a senior in high school and just trying to finish up this last year of my childhood, all while dreaming of my life as an adult.  My heart was most definitely growing fonder in his absence upon every arrival of his next letter.  Every day I expected one to come, I would practically skip to the mailbox in anticipation, as giddy as a school girl, because, that’s exactly what I was.  To open the mailbox and find another shining new and private treasure was always accompanied by an elation that nothing else in the rest of my world could compare to.  We kept up our letter writing, seeing each other on average, one too-short weekend a month, kissing our good-byes, hand in hand, at the train station and holding on to each other as long as we could.

At the end of that year I graduated high school, he finished his training, and came home.  In the next year we were married and began our life together.  We moved to the rural town where he would serve the Forest Service and fight fire during the summers.  I began working at the local hospital.  A year into our marriage I became pregnant with our first daughter.  Having experienced, by this point in life the love one has as a child for their own naturally born family, followed by the sultry, all consuming, intoxication of romantic love, I was now beginning a journey that would lead me to know the intimacy of motherly love fist-hand as well.

When our oldest daughter was born it was yet another new high that had no comparison to any of the other experiences in life I had had thus far.  The second she was placed on my belly, I knew that for this tiny being, red, scrunched, and crying, I would lay down my life, here and now, and would do anything to make hers as wonderful as it could be throughout the extent of mine.  My heart didn’t feel capable to both exist within my own body, yet be large enough to encompass the oceans of the earth, yet that grand form of measurement was the capacity of my love for her.  The oceans, the lands, the universes, there was no end.  I was an entirely new being myself in her birth.  Never again would a single day of my life be lived with myself as my first consideration.  I thought my heart may very well beat right out of my chest.

A mother’s love is something that, although one can logically understand, one cannot truly know the feeling and the weight of the emotion unless they have experienced it for themselves.  When I was pregnant with our second daughter, four years later, I thought I truly knew all that a mother’s love could encompass.

Possibly the most primal form of love that exists is that of desire of protection of one’s own flesh and blood.  What good is a love story if at one point or another that heart, capable of containing all the stars in all the galaxies, isn’t broken into a million tiny pieces?  To understand the full circle of what love is, it is necessary to also experience the desolation of the elation the idea of it once brought.

My pregnancies were perfect, easy, ideal.  Knowing that we were expanding our family from three to four was a joy all it’s own.  The love you have for your child can never be divided amongst another.  A new supply is created for that child and the love that springs forth for each of them will never come from the same reservoir.  They occupy separate, but equal parts of your heart, with your heart being made fuller in the mere presence of their existence.

With a new child comes a new idea and expectation of life itself.  What will that life now look like, sound like, feel like, etcetera.  When something in your perfect plan doesn’t unfold the way you’d imagined, it can derail you before you ever saw it coming.  Being told that our precious ten month old child was terminally ill with a rare genetic condition for which there is no treatment, and is always fatal, hit me like a freight train, and I hadn’t even known I was standing on the tracks.

I was destitute.  I couldn’t even see the pieces of my life to know how to being picking them up.  What would I do with them once I had collected them anyway?  They couldn’t be glued back together, and even if they could, they would never again resemble the life I had once held.  That feeling of the willingness to lay down your life for your child came roaring back at me, only this time with the knowledge that even to do so wouldn’t help.  I would only wish I could lay down my life for her.  I would have done anything to fix this for her, to save her, to make it not so.  No amount of money, or power, or fame held the answer.  She was beyond worldly salvation.  Despair is a hole filled with quicksand.  The more you struggle with it, the deeper immersed in it you become.  You cannot know the feelings of desolate helplessness in watching your child die, had you not first known the monumental joy brought about by the love of being that child’s mother.

In the end, the same love your heart conjured in the beginning, is ever present, no matter the current form it takes.  It will wax and wan, pulse, and transform over and over again, but it remains with you, nonetheless.  Thankfully, for the compassion of my family, friends, my husband, and our daughter, and the focus of our love for one another, we were able to walk through this process and come out hand in hand, on the other side.  We will never be who we were before, love has changed us all, and because of each other we still have the capacity to continue to love today.