Tag Archives: Grief

Give Yourself A Medal

Give yourself a medal.  It’s what my friend, Jennifer Pastiloff urges the attendees of her writing and yoga retreats to do for themselves.  Her basic theory is that no one else is going to give you one, so you need to give yourself one.  Go ahead and be proud of any and all accomplishments you’ve made, and acknowledge them.

Today, I’m following that advice.  Today is the fourth anniversary of the day my daughter died, and you know, I’m giving myself a medal for not losing my effing mind.

This loss is hard.  This grief is hard.  Every day without her is a burden I am forced to bear for the rest of my life, and It. Is. Hard.

In the days leading up to her birthday and the anniversary of her death each year I find myself becoming increasingly scatterbrained, anxious, and worrisome.  I become short tempered with my husband and anyone else who has the unfortunate experience of being around me in those days.  And in small ways, I just sort of inwardly ‘lose’ it.

While texting with a friend yesterday who knows this type of loss firsthand, she mentioned how the mere anticipation of these days cause her to break down, and by the time the significant date rolls around she’s practically numb.

I so get that.  That’s me. Soul Pic

Acknowledgement helps.  Each time the people around you take a moment to say your child’s name, recant a memory, or just let you know you’re on their mind a layer of pressure is lifted.  Grief is lonely, and when those around you show you comfort and compassion, it can pull us out of the feelings of isolation we so often live in.

We may all have people in our lives who will never mention our children at all.   The anger, disappointment, resentment, and hurtfulness that I’ve had to reign in and snuff out has often caused me a great deal of animosity, and trepidation.  I don’t always deal with those feelings in the most graceful of ways, but such is the nature of grief.  More so, it can be an unnecessary burden, a challenge, in learning how to accept that those relationships are whatever they are, and there is nothing you can do, or should have to do to alter them.

She’s dead.  No one has to show up for a birthday party or buy her a gift.  It costs nothing to tell someone you are thinking about them.  It doesn’t take much time or effort to let someone know you remember their dead child.  And yet, for some, those outputs of miniscule effort never happen.  You may be thinking about the family or friend who lost their child, but they need to hear it.

It takes a lot of patience, love, and acceptance to move on when a call never comes or your child’s name is never spoken.

But when it is, the joy that fills your heart is unmatched.

My dad calls me all the time.  He makes a point to talk about my daughter throughout the year.  He tells me about his memories of her, and when he talks about her to other people.  And he makes specific effort on her birthday and the day of her death, even the days leading up to, to let me know she is on his mind, and in his heart.

It means more to me than he will ever know.  Ever.

And that’s all it takes.

So instead of focusing on who isn’t there, the phone calls that never come, or the messages I don’t receive.  I’m choosing to stay focused on the wealth of support I do have, and all the remembrances that come my way.  I’m giving myself a medal for not losing my mind, because I’m still standing, that shit’s hard sometimes.

***

If you’d like to honor Miss Elliott today, a donation to the National Tay-Sachs and Allied Diseases Association would be greatly appreciated. http://www.ntsad.org

For more amazing insight on humanity, wonderful writing, and info on how you can be a part of one of her retreats, visit Jen’s site: http://themanifeststation.net/

 

 

 

A Life, As Told In Numbers

Numbers have a way of driving our lives.  We use them in every manner possible to evaluate ourselves, or even our worth, sometimes literally.  One’s age, bank account, weight, the year of their car, square footage of their home, hours spent working in a day, children’s grades, and so on and so forth can lead to their feelings of personal value, or lack thereof, and even inadequacy.  While some numbers bolster the feelings of praise or satisfaction, others tare them down with relentless fury.

Yesterday was my thirteenth anniversary.  I’ve been married for thirteen years, but I met my husband sixteen years ago.  I am thirty-two; half my life I’ve spent with him.   Out of curiosity and nostalgia I tried on my wedding dress to see if it fit.  It didn’t.  I couldn’t get it zipped.  There’s obviously only one real explanation here: clearly my ribcage has expanded (haha).

For your reference, here I am in my wedding dress in 2003, and then again not
fitting into it yesterday.  Like I said…my ribcage must have expanded, but I digress…

So, I felt badly, of course. A stupid thing to fixate on, but don’t we tend to do this much more often then we should?  I immediately took the dress off, mustered my best pose and took a selfie in the mirror.  I sent it to my husband hoping to hear I was still pretty (and young, and slim, etc… [Which of course he said I was, but to be fair it actually was a good picture and magically made me look like I had a six pack, which in real life I certainly do not.])  But why was I punishing myself?  So I’m not the same size I was when I was nineteen.  I’m not that nineteen year old girl in any way.  I’m not sure I resemble her at all.  Why would she have anything to do with how I feel about myself?  Why let a number sewn into a dress (or a pair of jeans) I’ll never wear again hold any of my own worth over my head?

I am so much more than a number on a scale.  I have plenty of other numbers that matter a lot more than that one does.

How about that thirteen.  That’s a good long time to be married, especially for a thirty-two year old.  Two.  That’s how many children I’ve birthed.  Zero.  The number of epidurals I’ve had.  Eleven.  Our oldest daughter’s age today.  Three.  The number of years our youngest daughter lived.  Four. The number of years since her death.

A million.  The number of times a day I think about her.

Forever.  The length of time this grief will stay with me.

To be fair, there are plenty of other numbers I have no idea what their totals are.  Numbers that I’m not sure how to incorporate into my self-evaluations, but numbers whom I know will always be infinitely more important than the ones on the scale.  For instance, how many times I administered seizure medications, though twice a day for nearly three years is somewhere around two thousand.  How many times I bathed her.  How many diapers I changed.  How many times I told her I loved her.  How many times I’ve cried since she’s been gone.  How often I’ve tried to conceptualize what she would have been like if Tay-Sachs disease hadn’t taken her life.  And how many times I’ve failed to do so. Because I can’t.  Try as I might, I have no idea who she would have been.  She didn’t get the chance.  The chance to develop her own personality, thoughts, feelings, perceptions, ideas, convictions. One tiny missing enzyme in her body took it all away from her.

I would love to change my numbers.  Who wouldn’t?  I’d be richer, skinnier, with a newer car, and a second home.  I’d have a living child who was seven and not just the memory of a perpetual three year old for all of eternity.  I would have stopped time, at the very least to live in the moment I held her, forever.

Time.  Some of the cruelest numbers we encounter circle around this concept. To keep moving forward, to keep trudging through this life, we can’t fall victim to the folly of willing it to change.  It will continuing moving along its own path no matter what we feel we have to say about the matter.  No matter how many times I try to count the ever growing number of tears I’ve shed, and to organize them into an account of love through grief based on the time of their occurrence.

But all of those numbers, the good and bad, plotted across a graph do add up  to begin to eventually form the description of who I am.  They’re all part of what makes me, me.  No one’s graph has a trajectory consistently moving at a forty five degree angle straight to the top.  We all have ups and downs.  They shape our character.  If we let them, they mold us into three dimensional beings who have the ability to love, understand, forgive, relate, sympathize, and empathize.  People who, because of their own plights are sensitive to those of others.  People who can lend a hand, or shoulder, or ear when needed.  Tried through fire.  Sharpened with iron.  Bent and broken.  Clustered masses of infinite combinations painting the picture of humanity.

Each of us has a unique story to tell, and our numbers help us do just that.

 

 

 

An Unlikely Hero

I first met Karen Ledsham in 2009, shortly after my Miss Elliott had been diagnosed with Tay-Sachs Disease.  We met through the National Tay-Sachs and Allied Diseases Association, online.  I lived in Seattle, and Karen lives in the U.K.  One of the great things that I learned about Karen was that she was sending her daughter Abigail’s doll, Pippy around the world to see the sights that Abigail had never gotten a chance to see.  Karen shipped Pippy to me and I took her to Boston in 2011 for the NTSAD’s Annual Family Conference.  By this time I had made a scrapbook for Pippy so everyone could chronicle their journey and send the memories back to Karen each time.  I was happy to have a chance to escort Pippy across the USA.

NTSAD 2011
Miss Elliott and I (front and center) with Pippy, and several of the families at the NTSAD Annual Family Conference, Boston, 2011.

Having survived the unthinkable, the death of her daughter, Karen would soon embark on a new and horrific journey in which her seemingly healthy son, her only other child, would soon be battling bone cancer.  Still standing today, Karen writes about her unlikely journey to becoming a hero to so many families facing child loss, as well as to those who haven’t.

“Everybody keeps telling me or, commenting on Facebook at how strong I am. They tell me how much they admire me, but I’m feeling very anxious and worried after twenty one months of time spent staying at home with my grief about going back to work in just two days’ time.

At least that’s what I’ve been telling people, but what I’m really feeling is sadness and guilt about carrying on with my life. I’m feeling sick to my stomach of having to walk through the same doors, to the same rooms, and see same people, all carrying on as if nothing has happened or changed when everything has happened and changed for me in my life. Everything.

I haven’t worked since that Friday evening back in April 2014 when the Accident and Emergency doctor told us our son, Harrison had a probable bone tumor. It turned out that he did in fact have bone cancer. He fought hard, but his battle was cut short just over a year later.

The cancer first took his leg, then his childhood, then his life. At the same time it took my life. The life that I had learned to live again after the unimaginable loss of our daughter, Abigail six years before to the genetic condition known as Sandhoff’s. Within the next year, I would also lose my mum. I didn’t know how I would survive those losses, but eventually life was going good again, we were all learning to survive and even enjoying life again. I had gone back to work four months after losing Abigail and although it was extremely difficult, as I’m a nurse, it was the right time and we carried on as best and as normal as we could because we had Harrison to think of. He needed a mum who was capable of caring for him and attending to his needs. I felt that in going back to work, it would help me stay focused and present in my life, and his. I didn’t feel as though I had a choice not to carry on.

Abigail and Harrison
Abigail and Harrison Ledsham

I was constantly frightened that something would happen to Harrison after Abigail was diagnosed and after she passed. I suppose I wrapped him in cotton wool. But at the same time wanted him to have a full and varied life, one she had missed out on. We put everything and all our time and energy into him.

After going back to work part time and under no circumstance would I work any extra hours. All my free time was precious, precious time to spend with Harrison and Paul. Colleagues used to question why I wouldn’t I work extra as Harrison was in school. My answer was always the same, I wanted time at home and to not be too tired or exhausted when he came home so I could give him my all. We let him take part in evening and weekend activities. If he wanted to do them, we did. He was busy with activities seven days a week. He was nearly a black belt in Karate, played rugby, golf, the French Horn, piano, had Spanish lessons with tutor, Boy Scouts, street dancing and drama. He enjoyed it all, but most of all we enjoyed seeing him happy and healthy and experiencing and embracing all the things life had to offer.

Now, after losing Harrison too, I find myself trying to move on, but the fact is I don’t want to move on without my children. I have no other children so I don’t really see the point like I did before. What other choice do I have? I could end it all now, and I have constantly had this thought, every day since he died. Even so this pain is so unbearable, I couldn’t do that to myself, to my family, to the memories of my children. So I know I need to take baby steps.

My going back to work is not about the money. We have our savings, and to be honest what do I need much money for now anyway? In many ways I feel that I can’t face nursing, looking after sick people, seeing death daily, doing the job I trained for and loved for so long, but what else can I do.

I made a decision that the Cancer wasn’t taking my career so I’m just going to be working one day a week, doing none clinical job and going to see how I get on. It will be nice to see everyone again but I can’t say I’m looking forward to it. I’m not looking forward to not being with Paul, my husband during my hours at work. We haven’t spent much time apart in nearly two years and I’m feeling worried about that too. Paul isn’t working either yet. After he took his leave to be with Harrison, his company was bought out and moved to another location. All two-hundred plus employees were let go. Now, after 25 years of service, where does he go from here? He doesn’t have the energy to start over somewhere new.

We’re not sure who we are anymore. So much of what we spent our lives building is gone. So much of what defined who we are doesn’t exist anymore, but every day I wake up, and here I am. I didn’t ask for this, I don’t want to be strong, I don’t want to be an inspiration. I just want to be a mum. Although so many people look at me as a hero for what I’ve endured, my heroes will always be Abigail and Harrison.”

Grief. What’s Next?

When I met Noah Mathew Leos last April at the NTSAD Annual Family Conference in Washington, D.C. his presence was magnetic.  I was captivated by this beautiful child.  His light shone so brightly you couldn’t look away.  His mother and father like so many other parents were, both proud, yet humbled to be in that place with their son.  Surrounded by those with children like theirs, those who understood their life.  It was their first time attending this conference, and I could tell instantly; they were home.

They looked so much like many of the families I’ve seen over the years.  Families like mine.  Their son Tony, was so mature, wise beyond his years, and respectful of everyone.  Little Marina dazzled everyone in her presence with her immense smile and constant dancing about.

These families share an unspeakable bond, and no words need to pass between us to communicate with each other.  We just know.  And one by one, we all must pass through the threshold of loss beyond the daily care routines and constant what ifs into the realm of loss and grief.  When suddenly our know world is sent spiraling into oblivion, we often wonder, what’s next?

Zuraya, Noah’s mother beautifully and eloquently captures the heart of so many mothers of loss.  Our days are upside down.  Our lives are inside out.  Here she gives a small window into her world since Noah’s passing and sheds light on some of the lesser seen personal struggles we endure.

Leos Family

“Today marks 40 days since Noah’s spirit transcended into heaven, following a fatal Juvenile Tay-Sachs Disease diagnosis at the age of 4 ½ years. After discussing prognosis we spent so much time planning what we wanted his future to look like, we never considered we would have to commemorate his life and struggle with such an atrocious monster like Tay-Sachs. The emptiness we feel without the constant care and routine of Noah has been suffocating at best.

As a baby, Noah had some developmental delays, but by the age of two he seemed to be “growing backwards” as his pediatrician would say. Gradually he stopped meeting his milestones altogether and began to physically and cognitively regress. After countless consultations with physicians and specialists, a neurologist discovered Leukodystrophy in Noah’s brain. On November 4th, 2014, we met the mother of all evil when we learned that the Leukodystrophy was the effect of toxic build-up in his brain caused by Tay-Sachs Disease. Slowly we picked up the pieces of our now shattered expectations for Noah’s future and created a list of 50 memorable moments we wanted to share with him. My husband, Hector and I were eager to take on the challenge of giving him a fruitful and inclusive life where he would never feel confined by his physical and mental limitations. Before his passing we managed to check off 27 experiences in the year after his diagnosis date. Quite unexpectedly, on November 1st, 2015, our Noah Mathew Leos passed comfortably and peacefully at home in his sleep.

I wish we held the same fervor for our future as we did Noah’s. Shortly after Noah’s passing his physicians, family, friends and even total strangers approached us about how we would memorialize Noah. We documented his life and how it impacted our family via social media, and to our surprise our Earthly Angel quickly attracted a number of followers. After his passing, immediately we were inundated with what’s next and how will you honor Noah? With great intention, people readily wanted to do something and help contribute in the planning of a memorial for our son.

We were embarrassed to tell people that after the shock of having to arrange Noah’s funeral, we didn’t want the added pressure of planning a celebration of life. Our community was surprised we have no foundation or prodigious tribute established in his honor. We are dumbfounded on how to commemorate Noah’s life and we have no immediate plans for this massive undertaking. We feel we are not only disappointing Noah, but our community as well for blocking their blessings and willingness to help our family during this time of need. Honestly, we simply don’t have the courage to take on such cumbersome task so early in our grieving process, people can be inconsiderate of time when you’re mourning. We feel a constant, insurmountable pressure to appease these requests, and the guilt of not meeting the expectation of our community further aggravates our affliction. Our grief consumes our family physically and emotionally, we regret the task of piecing together a memorial is far too daunting to even consider at the moment.

The Tay-Sachs disease process is gut-wrenching yet Noah managed to smile everyday through his pain. We found grace in his happiness and with every step we kept pushing forward, it seems unfair fabricating an event for the sake of satisfying everyone’s need to want to do something right now. Noah has a six-teen year old brother, Antonio, and four year old sister, Marina, both actively participated in his care and need time for their hearts to heal as well. My husband and I both hurt over the loss of our son, but our hearts are in peace that Noah is no longer being confined by this agonizing disease.

Although Noah’s physical body may have succumbed, we feel his spirit conquered Tay-Sachs and his victory deserves to be celebrated in a memorable way, but at this juncture we want time to reflect on his life until we are ready to honor this momentous occasion. Our mission was to help carry Noah through the threshold of Heaven and we have the rest of our lives to celebrate the lasting impact he made here on Mother Earth. By choice we are not publicly acknowledging this milestone before we are ready to do so and we feel selfish about this. The four of us want the opportunity to remember Noah and celebrate him privately without the sense of urgency we felt when we learned of Noah’s fate. Now, we will take time for us.

Noah passed almost exactly a year later to the day he was diagnosed. Our family wasn’t prepared to lose him so abruptly. No one was. For now, we heal one day at a time and can’t look beyond into the next day, let alone the rest of our lives. We feel completely defeated that we could not find a cure to keep Noah alive. There is a sting of guilt just breathing at times. It is excruciating when as a new family we are out enjoying a sunny day and realize Noah isn’t physically present with us; as if we intentionally forget him. That is the paradox of our bereaved family: Noah has passed us, we are survived and often feel guilty we are still living.

Our bucket list was a tribute to Noah’s endeavor in his fight against Tay – Sachs disease. We want to pay homage to our little man for warming our lives with smiles he gave us despite his pain, for his encouragement, for redirecting our faith and for the timeless memories we will cherish. It is going to take some time for us to organize and think through the details of planning a dedication to him, but one thing is certain- his commemoration will be monumental and impacting, just like his toothy grin.”

Symbolic Mourning

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

Rebecca and Colby

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

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

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

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

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

Bracelet

#Problems

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

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

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

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

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

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

Strength is not Enough

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

This was a win.

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

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

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

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

So what then?

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

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

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

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

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

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