Tag Archives: Life

Three Long Years

We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away.  A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time.  I worry about her memory.  To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them.  She is alive in my heart and soul.  She is imprinted onto my being.  I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours.  Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet.  This was our life, the one we share.  It didn’t look exceptionally pretty to others.  It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult.  No one coveted it.  I kept it close, as close as I could, for as long as I could.  No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book.  I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here.  She taught me so much about life itself.  I am eternally grateful to have had the opportunity to be her mother.

To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here:

To Let Them Live

“I just try to let them live their lives,” she said.

“I say, just try to remember every moment. She won’t be two months old for long,” she told her seat-mate. “Soon she’ll be walking and talking.”

Or she won’t, I thought grimly.  The rest of the world doesn’t seem to share the same outlook as me with their constant expectation of a bigger, better, brighter tomorrow that they seem to feel entitled to, but I couldn’t help it. As the mother of a now deceased child who never did those things it’s just the automatic thought that springs to life in my mind. A consequence of my position, I suppose.

“I worry about them,” the petite, approximately mid-fiftiesish Asian woman continued from the seat behind me. “I just see them working all the time, and I know it’s rough on them. I know they want to get a house, and now they have the baby so you wonder when it will work out, but what can I do?  They’re adults and I have to let them live their lives. I just can’t wait to see my grand kids this weekend…,” she continued.

This eavesdropped upon conversation was a reminder to me that parents never stop parenting. Not when your children are grown, not even when they’re dead. It was an all too familiar thought, and ironic given the timing as we were wheels down in San Francisco after the first leg of our flight on our way to a good friend’s wedding.

Like me, this friend has also lost a child. Again, like me, she lost that child to Tay-Sachs disease. She knows the pangs of grief that accompany never hearing those first words or seeing those first steps that, like everyone else, we also thought we were entitled to as a mere byproduct of giving birth to our children.

Like me she’s never stopped being a mother to her child, even though he now exists in some form and realm beyond her reach. Even so, here we are this weekend to celebrate with her and for her. She’s found new love and recently become a mother again to a beautiful new daughter named, in part, after my own daughter.

She relayed to me in one memorable conversation how strange it is to see her wiggle and crawl around. It’s something foreign to us, uncharted territory, as our deceased children were never able to achieve such praise- worthy accomplishments.

This trip marked my first official face-to-face meeting with this tiny, magic girl. Holding such a precious child, my daughter’s namesake in my arms was a salve to my deeply broken heart. I whispered in her ear that I loved her so and had since long before she was born. I watched my husband cry as she was placed into his arms and I marveled at the beauty and joy she brought into the world.

It’s a relearning about the process of life. A continuation. Another chapter. Time matches on, and so must we. Old wounds may sting somewhere from below the surface, but new joys may also be just around the corner. Incessant worry won’t change what’s already there waiting for us, it simply distracts us from the pleasures of the present.

Living without entitlement doesn’t mean living without hope. We each have to choose to have the courage to ’round the bend as the road begins to curve. None of us know what the future holds for ourselves, let alone anyone else. You just have to let them live their lives. And as a parent, or child, or lover, or friend, you just have to live yours. And know that even in times of extreme pain and suffering this life, your life, and theirs too, can always circle back around and turn out to be better than you ever thought possible.

A life in Kindnesses

October 3rd tends to swoop in and cover me in an eerily unusual calm.  In the week leading up to it however, I’m a manic, grief stricken, emotional mess, inwardly.  Outwardly I’m a mess that looks exactly like a person with perfectly manicured nails, expertly applied lipstick, and a perma-grin who goes around saying “I’m fine, really, but thank you for asking”.  I find myself counting down the days until it’s over.  Counting down the days until another of my deceased daughter’s birthday’s pass and I can get on with feeling the preemptive grief of Thanksgiving and Christmas, then New Year’s, then her death date.  Then I get to swim along with eight blissful months of only my day to day grief, without some calendar specific date slapping me in the face.

This year was harder.  It was easier.  I don’t know what it was.  I just know I’m fine, and also, I hurt, all at the same time.  It’s just another day, and it’s not.  I tend to start compulsively baking, eating, making craft projects, and shopping for all of the aforementioned during this time.  Anything to take my mind of my lonely longing heart.  Sometimes the pain is multiplied when combined with fear.  Fear that she’s no longer my child, in the active sense, but just a memory to those who knew her, and worse, only a story to those who didn’t.

The thing you should know about grieving parents is that every time you want to tell family and friends about your child’s accomplishments, funny anecdotes of their behavior, or important memories you want to share, we do too.  The problem is they’re physically gone, and you’ve most likely already heard everything we have to say.  That’s one of the things that hurts me the most, I find.  I want to talk about her.  I want to tell about “the one time that…”, but there are no new stories share, no new pictures to show, nothing you haven’t heard before.  So we talk in a loop, and keep bringing them up, not to make you sad or to make you feel badly about sharing your stories and pictures, but because we desperately want to be included, and don’t want our children to be forgotten.

I firmly believe that the purpose of my Miss Elliott’s life was to spread the message that every life is valuable and important, no matter how short, and no matter how small.  I also believe that her work can continue, and that we can all help spread this message.  This year as her sixth birthday approached I decided to start a campaign I called “Six Years Six Acts for Miss Elliott”.  I challenged everyone to spend the week leading up to her birthday committing one random act of kindness per day.  I further challenged people to move outside of their comfort zone by not simply purchasing a latte at the local Starbucks, but by trying to spend little or no money a few of those days and to do something they might otherwise not.  The point of the exercise wasn’t to make it easy, it was to have some actual forethought, combine it with resolve, and take action for good.

Furthermore, I challenged individuals to reflect back at the end of the week to how their random acts of kindness affected not only the person they were kind to, but themselves as well.  I took this challenge too, of course.  And over the period of the next six days I found that on some days I used money for my kindnesses and some days I didn’t.  Sometimes I spoke to the person/people and sometimes my kindnesses were anonymous.  I also found that no matter what happened (even when certain stores refused to let me hand out my free kindnesses to customers, and I came home crying with Loren telling me her was sorry Corporate America ruined my attempt at changing the world), I gained something every time.

When I woke up on the morning of October 3rd this year, I felt relieved.  I was overwhelmed by pictures and messages of people telling me about their kindness experience.  I was blanketed in comfort which served as my armor against grief that day.  Instead of wallowing in my sadness over her absence I had made the day meaningful for not only myself, but others as well.  I don’t know how much exponential impact these kindnesses had on the world, but  I hope it gave people a reason to smile, and I know it gave my daughter’s name relevance.

Front of Card Back of Card

My Husband Does Not Complete Me


He doesn’t fill some void within me, or make me whole.  He’s not my best friend or my other half.  He’s my husband.  My partner, my equal, my rock.  A whole separate person of his own who chooses to share his life with me, and I, mine with him.

We were married very young.  We knew we wanted to be together, to do this ting called life together, so just one month after I turned nineteen we eloped.  We had met when I was sixteen and been dating for two years at this time.  We knew that we were ready to begin a life with each other.  I know people questioned and even worried about our decision, after all what could we possibly know about love and life at the ages of nineteen and twenty?  The answer surely must have been nothing.  Close, but not quite.  There was one important factor that we did know; we knew who we were. We also knew what path we wanted to go down.  We decided to take that path together, for better or worse, to grow with each other by our sides.  We made vows and we meant them.

No marriage is ever easy.  No marriage is ever fully without trial or tribulation.  Everything in life doesn’t always come up roses.  Here we are, going on twelve years of marriage later.  In that time we’ve experienced career changes, moves across country, and back, the buying and selling of homes, the birth of two wonderful children, and unfortunately the terminal illness and subsequent death of one of them.  So here we are, going on twelve years later, and now I feel like I can say I know quite a bit more about love, and life in general, and most importantly, I still know who I am. 

I am a whole person on my own.  I was not looking for love in order to gain completion of my half-self.  I was not looking for someone to make me the person I would be.  I am who I am on my own accord.  I have family, friends, and an entire community that does not revolve around my husband.  I have my own mind.  We have separate interests, and hobbies, and thoughts, and passions.  Likewise, my husband does not need me in order to function (despite what I may tell people).  Without me he would still have his career, his life and avocations entirely his own.

What we do complete, together is our family.  Every day, we wake up and make the choice again and again to keep doing this thing called life together.  To be Mom and Dad.  We don’t always agree, we’re not always on the same plan, but every day, over and over, we choose each other and the life we have built together.  We make time for one another.  We make room for one another.  And aside from just being Mom and Dad, we let each other be Becky and Loren as well.  We encourage and celebrate each other’s successes and shoulder the burden’s of each other’s failures.

It is one of my greatest hopes for our family that in this way we will have lead through example so that our daughter will grow into a level headed person of her own who knows who she is and what she wants in life.  Someone who will never let her individuality, or thoughts and opinions be swayed or suppressed. (who am I kidding, she already is)

We are strong, not because we have melded ourselves together into the single thought line of one super-person, but because we allow our individuality to exist so that we may each contribute the best parts of ourselves to our family and our life together.  Where one has a deficit the other fills it in.  On top of this and above all else we respect each other.  We are present with each other, while still allowing each other room to grow.  We communicate and make every attempt to follow the same strategies to be a united front, so-to-speak.

We argue and fight and get annoyed with one another from time to time because that’s what you get when two strong willed people don’t see eye to eye, but the truth is, I wouldn’t trade what makes my husband him any more than (I’d like to think) he would trade what makes me, me.  There are a lot of people who’ve spent a good portion of their life trying to find such a person, and who’ve encountered several bumps along the way.  I’m happy to have found my husband at such a young age.  I’m happy with the life we’ve built in the time we’ve spent together. 

My husband does not complete me, instead we compliment each other, and he does complete us.

wedding 2

Note: Remember how I mentioned at the top that we eloped? 
The pictures embedded in this post are not actually those of our wedding,
but of the reception we held for our family and friends three months later.

What Could Have Been Never was to Be.

We walked slowly, strolling around the shopping center aimlessly, my husband and I.  It was a Saturday evening and we had reservations at an upscale restaurant overlooking the water on the twenty-first floor of a building in downtown Bellevue, WA.  We were dressed quite nicely, in my opinion, and as I walked, hand in hand with my lover, my friend, and my confidante of fourteen years I thought about what we looked like, and what we felt like.

It was Loren’s birthday and I was taking him to a premier local steakhouse for dinner.  We were too early to arrive for our reservation so we chatted about nothing in particular as we strolled.  Then we passed a little boy who ran out of a storefront across our path to his mother.  He was young, maybe four years old.  Nothing remarkable happened.  And then Loren said “That little boy had Down Syndrome”.  “He did?”  I replied.  I told Loren that I hadn’t noticed which was odd, because I usually find myself gazing intently at children who are different.  He had noticed this about this little boy for the same reason I usually did.  I feel so connected to them.  I stare so lovingly and longingly whenever I see such a childI told him how I sometimes worried that the parents would catch me staring and think- “That you’re staring for the wrong reasons”, he said as he finished my yet unspoken thought.

“Exactly. Look at us”, I said.  “We look like two young affluent city-ites out on the town without a care or a clue.  No one knows what we really are.  No one can see it.  They would never know that in many ways we’ve lived their life, or at least a completely different one than we appear to live now.”

It feels odd for me to be out without my children.  I feel naked somehow.  Not in a shameful sense, just too exposed and a little disconnected.  It feels as though a part of me, a part of my identity even, is missing.  Although Elliott is gone, she will always be with me but you can’t see her.  And Skylar, who is here was away for the night.  She’s growing up and living her own life.  She had plans of her own that didn’t include us, which is good and constructive for her as a person, to be her own person and not just our child, but that’s a whole other lesson of it’s own in letting go as a mother.  One I’m hoping to navigate in tiny instances such as these over a long, long period of time.

It’s a problem that often plagues me: the feeling of being an outsider in society.  I further remarked to Loren that his turning thirty-two that evening, now made him twice the age I was when we met.  “Thirty-two”, he repeated while pondering the meaning of the number.  We regarded our lives together, and how we’re not as young as the teenagers we once were, but we’re not that old either.  They didn’t card us at dinner for our glasses of wine. Either we don’t look young enough to be carded anymore, or they just don’t care as long as you can afford to purchase one of their sixty dollar steaks.  We laughed together at the prospect of somehow feeling seventy-five and twenty all at once.  So young, but so much life lived and so many lessons learned already.

After dinner, while walking back to our car we came upon the Disney Store.  I stopped at first to go in, but soon realized our nearly ten year old daughter has mostly outgrown her interest in this store.  I also had the overwhelming urge and want to be able to buy an Elsa dress for my five year old like everyone else in America is doing right now.  I miss so many things about my daughter, and as time goes on, I miss seeing her grown up and have the experiences that I see children all around me experiencing.  Of course I wish she had never died, but I also wish she never had Tay-Sachs to begin with.

Loren’s thirty-second birthday which is actually today, May fifth: Cinco de Mayo, marks the beginning of change in our lives.  He accepted a new position at a new company in a new city, which he started today.  This will entail the selling of our home and our moving to this city, which is several hours away.  After waging a civil war, of sorts within our own lives over the last few years we see these events as our own personal victory and newfound sense of freedom. Cinco de Mayo, how apropos.

So much change always makes me emotional and nostalgic.  I suppose it does for everyone.  Change is difficult, even change for the better.  So much of it so fast could potentially be unsettling for anyone.  I began to cry at the thought of Loren leaving for his new position.  I would miss him while he was away, and before we could come join him, but it was my feelings of missing Elliott that were heightened with all these changes swirling around us.  It was another new chapter in our lives, that would only involve her as a memory.  It would be the same for every new chapter from here on out.  I told Loren that I still wish she could have been here and been with us as we move forward, doing all the things a five year old would do and being a living part of our lives.

He held me tightly and consoled me and also told me that he knew I did, but that it just never was to be.

And of course, he was right, but it still doesn’t make those feelings any easier. C’est la vie.

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.

An Insider’s View Looking Out

“Just the three of you?” they ask.
“Yes, just the three of us,” we reply, every time we walk in to be seated at a restaurant.

No one can tell, but we know, of course, that it’s not just the three of us.  It’s just that the three of us are the only ones people can see.  This last week I had the opportunity to attend my fifth Annual Family Conference, hosted by the National Tay-Sachs and Allied Diseases Association.  We have attended every year since we received Miss Elliott’s diagnosis.  I knew after our first attendance, that I would never not return.  Even now after her death, I continue to return, year after year, not only for aid in my own continued healing, but also because unfortunately, I have a very special knowledge base that I feel it is my duty to assist in transferring to newly diagnosed families attending for their first time.

It’s hard to describe the level of comfort you feel in being around these perfect strangers who look and sound just like you, whose daily lives so closely resemble your own.  Especially when no one else around you in your daily life can compare or understand first-hand the way they can.  It’s an instantaneous bond that’s formed upon your first meeting with any of these families.

In my travels last week I unexpectedly met up with another family at the airport in my connecting city, who were traveling to the conference as well.  This family has not one, but two affected children.  I eagerly embraced them and their children, and we struck up conversation about our impending weekend.  Time passed and as the boarding calls began, people shuffled around, and I went back to my seat with Skylar and our bags in the terminal.  This family’s belongings were quite cumbersome.  They had special seats, a special stroller, medical devices and machines.  As the mother turned on the portable suction unit to clear her son’s airway when he began to gasp and gurgle, the onlookers ability to keep from openly gawking waned significantly.

Suddenly, unbeknownst to this family, as they went about their daily routine of caring for their children, all the eyes in the surrounding area were firmly fixed on them.  It was as if the room had darkened and a spotlight shined only over their heads.  It was an odd position to be in; an insider looking out.  I was that mother.  I was that family. But, in that moment, no one could see that.  Traveling with Skylar, I looked like any other “normal” mother.  You would never know that I had lived the intricacies of their life at one time myself.  I saw the stares, the whispers, the shifting away of the bodies around them.  While everyone had their eyes on them, I had my eyes on everyone else.  I had never watched this scene play out from this angle before. It was unnerving.  I wanted so badly to protect them, to shield them from this.  I wanted to stand up and yell to the onlookers that they couldn’t catch what these children had, or to stop looking at these people with such pity in their eyes.  I felt my blood boil, and my stomach turn.

Like I said, it’s odd to be an insider in the life of family with a terminally ill child, yet look like everyone else.  To look like an outsider, like the rest of them.  A “normal” family, if you will.  The only time I feel normal, is when I’m around the other affected families at this conference because the truth is, I am an outsider, from normal society, most people just can’t tell anymore because Miss Elliott is no longer physically with us.  When I’m with these families, I belong.  We belong together, for better and worse, in love, support, and strength for one another.

One of the new families that I met, attending for the first time this year posted this description
on their daughter’s Facebook page after their experiences over the weekend.  I couldn’t sum up the feelings of attending this yearly conference any better than Annabel’s mom, Casey has done:

“This past weekend, our family, along with about 60 other families, attended the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference. I cannot even adequately express what this experience was like for me. Maybe half, or less, of these families brought their children currently battling either Tay-Sachs, Canavan, Sandhoff or GM-1 (all very similar diseases). The other families have already lost their children to these same awful diseases, but they continue to come every year to not only reconnect with the lifelong friends they have made at the conferences, but also to offer support and advice to the new families like ours. These long bereaved parents are not only surviving, but smiling and laughing even. To be able to see living, breathing examples of what it’s like to walk through this fire and come out on the other side is such a blessing. I often wonder if a parent can ever be happy again after going through this, and the answer is a resounding YES. The way these parents honor their children with their fundraising and advocacy is amazing. They also provide us new families with invaluable information regarding managing this disease. Due to the rareness of this disease, there are no “specialists” in the medical community, so the parents become the experts. If I have a question about a medical or equipment issue, I can ask these people and get an immediate response. They have a genuine desire to help.Another wonderful aspect of the conference is just feeling normal. It’s the one place where every single person knows what it’s like to be me, and there is no pity and no praise for being strong. No one is afraid of me or my child and no one says the wrong thing. Even though we may not have anything in common except this disease, the bond it creates is so strong. I am grateful for these people and am grateful for the NTSAD for providing a way for us all to connect. If you want to read more about this organization, what they do for families like ours, and what you can do to help our kids, visit NTSAD.org.”

Annabel and her mom, Casey.

One final thought I want to leave you with is the sentiment portrayed in the photo below.  Every single one of these beautifully smiling women have lost a child.  How can we all sit there and still have the ability to smile, to continue on, you may ask? The answer is easy; because we have each other.


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 Physicality of Extended Grief

Even though I’m not old enough to go around saying “I ain’t no spring chicken anymore”, I’m certainly not a twenty something and I’m starting to feel my age catching up with me, or so I thought.  I’m not that old…to quote the band One Republic:  “Old, but I’m not that old.  Young, but I’m not that bold”…anyway, I turned thirty last year and it just seems that weight, tiredness, and forgetfulness come with the territory.

My mother suffers from Hypothyroidism (underactive thyroid), and I had recently started to wonder if I may be starting to show symptoms of this as well.  Things like this tend to pop up as we age, right?  As I looked up the symptoms, which included, tiredness, weight gain, and even the inability to be able to stand the cold (I really have that one, bad), it sounded like the nail was being hit right on the head, and it also said that it often goes undiagnosed because of the attributing the symptoms to age itself.  I made an appointment to have my levels checked because I want to make sure that as a mom, I’m not too busy caring for everyone else, that I forget to care for myself.

No one is ever happy with not feeling their best, that is, the idea they hold of themselves of what their best either is, or could be.  One of my friends once told me that we don’t always compare ourselves to others (friends, TV, magazines), we compare ourselves to the idea of the best ‘us’ in our heads.  It’s oddly interesting how our body image can take up so much room in our consciousness and become one of the pieces of the foundation of who we are.  We often hold ourselves hostage to an unrealistic standard of beauty or weight or whatever imposed on us by the media, as well as our own comparisons to who we were when we felt our best, and allow it to all get wrapped up in our sense of self worth.  For me, that ‘best me’ would be the me I was when I was a seventeen year old senior in high school.  Young, thin, and my whole life ahead of me.  I’m 5’3″ and back then I weighed 112-115 pounds.  Why would I now, as I thirty year old woman, even compare myself to the child I was in high school?  Haven’t I changed in mind and spirit sense then, and gladly embraced those changes?   Why would I still hold out mentally for my physical past self?  Are we or are we not more than just the sum of our parts?

As of this very morning, I weighed 126.2 pounds.  I know, I know, no shock and awe.  I get it, that’s not a lot, and no, I’m not overweight.  I seven still wear the same size I wore back then, but It’s not the ‘me’ I feel like I am.  My weight has always been pretty steady, never fluctuating more than a few pounds, even after having two children.  I’m currently about six pounds heavier than I typically tend to be, which is the heaviest I’ve ever been as an adult (save pregnancy) and even with a healthy diet and exercise (which I detest, but try to keep up for the sake of my health), I just can’t seem to make that number come down.  Trust me, I’m not looking for sympathy for the skinny girl here, it’s just that for me, this isn’t the me I want to be.  The tiredness, the constant run-down feeling, the scatterbrained forgetfulness of my daily tasks.  This had never been me and I don’t want to just sit back and accept that it has to be who I am now.  Is there another explanation for it all?

I think that most of you who read this blog are aware, but for those of you who aren’t, you should know that this blog is a rolling account of our life since our daughter’s passing.  Last year, I wrote a book about the wonderful blessings that were the lessons I learned in her three short years of life, hence the blog title.  In pondering these physical issues I began to wonder if any of my fellow grieving mothers have been experiencing any of the symptoms I have been.  I certainly wasn’t prepared for the firestorm of comments that came flooding across my computer screen when I posed this question on a board in our online grief group.  My daughter died of a very rare genetic neurological condition known as Tay-Sachs Disease.  The woman who are a part of the grief group I mentioned have all had children pass of either Tay-Sachs itself, or a related genetic condition, so they have all come to experience loss in the same manner that I have.

Nearly ever single woman on the feed echoed the words of the others.  Almost any one of the responses I received, I could have written myself.  The continuing effects on their health since their children’s passing was a reflection of the sentiment expressed by everyone else in the group, and none of these symptoms had been present before their children’s deaths.  Maybe my symptoms, to which I attributed to growing older, or even other issues, such as Hypothyroidism, were really a manifestation of my ongoing grief.  It’s comforting, even if unfortunate, to know that someone else out there understands how you feel because they are experiencing it for themselves first-hand.  In this way, we know that they not only understand logically what it would be like, but they know through living it what it is like.

From The sleeplessness, to the tiredness even if you can sleep, the body aches, weight gain, hair loss, anxiety and panic attacks, even outbreaks of hives, our grief is most definitely being manifested physically.  We focus so much on our mental and emotional health after a death, that I think, it’s easy to forget how it can affect you physically too.  The stress accompanied with this kind of life event can be crippling and not just in the first few days and weeks afterward..  When I first broke out in hives, around six months after my daughter passed, I tired everything to remedy them.  Nothing, not Benadryl, Cortisone cream, not even Calamine lotion would calm them.  After suffering for nearly a month, it got to the point that I couldn’t sleep.  The sheets scratched my body so badly that I couldn’t rest.  My hair, my clothes, it was agony for anything to brush against my skin.  I scratched relentlessly, ripping my skin apart and covering my body in scabs.  I finally went to the emergency room when I couldn’t take it any longer.  They ran a battery of tests and asked all kinds of questions about the detergent I used, where I had recently been, and even what I had eaten lately.  They ran allergy tests that showed nothing, and eventually they came to the conclusion that it was stress related.  I didn’t believe them.  I didn’t even feel stressed.  I was carrying along just fine, just like I always did.  A prescription for a very strong anti-itch cream, and a steroid finally cleared up my hives and  went about life just like I always had.

It wasn’t until a year and a half later, when I had another bout of hives (after an admittedly stressful experience) that I finally realized this was my body’s way of reacting to the stress I was continually stuffing down inside.  As mother’s there’s no time for us to get sick.  There’s so much to be done every day, that there’s often no time to acknowledge what we’re dealing with personally.  When everyone else needs something from you, your reserves for helping yourself have all been depleted by the time you get around to doing so.  Then, there’s no time to sit around and feel sorry for yourself about it, so you just keep chugging along.  I couldn’t believe that other grieving mother’s had even experienced outbreaks of hives as well.  I couldn’t believe how closely all of our issues mirrored one another at all.

Our grief has been wreaking havoc on our bodies in the years since our children have passed away, sometimes even without our realizing it.  Grief can wreak havoc on all facets of your life.  No one has a prescription for a magic fix to these problems.  This is the reality of living with extended grief.  There is no magic cure for grief and it’s symptoms, there is only learning to not let it overcome you.  It takes time to understand the hold grief has on you, and it’s severity can grow and change over time.  Though we hope that as it changes it shrinks and holds on to less of us, when you lose a child, it is not a hut that can ever be healed, only one we can try our best to manage as we will live with it every day for the rest of our lives.