Category Archives: Grief

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.”

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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.

The Victory of Love

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

that overcomes the world.

Tales of my Dead Daughter

Soul Pic

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

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

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

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

I Don’t Cry For You

Soul Pic

I cry for me.

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

I cry for me.

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

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

And I would cry for me, because of you.

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

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

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Sorrow, Strength, and Seahawks

I’ve lived in Washington state (nearly) my whole life.  As a child my family moved here from Oklahoma, where I was born, when I was just one year old.  My husband and I traveled to Texas for his work and put in a two year stint there.  It was just long enough to get the job done before we came running back up to the Pacific North West.  Both of us having lived on the eastern side of the state before, this time we were one our way to Seattle, just about as far west as you could go.

Eastern Washington and Western Washing are two very distinct worlds all their own separated by the Cascade Mountains.  I grew up in three hundred day of sunshine a year surrounded by desert foot hills covered in sand an sagebrush.  I’ve been told that Rattlesnake mountain, just outside of town is the highest peak west of the Mississippi that doesn’t have a single tree on it.  If you don’t know much about Washington state, you’d probably never guess that we have a vast desert at the center of state itself.  Western Washington, on the other hand is a lush green oasis.  There are rivers and streams everywhere, forests so thick that you can’t see them for the trees, and mountains topped by alpine glaciers, and the cliff-lined vast Pacific Ocean.

Moving to the other side of the state, and back from Texas was an adventure.  It was January, 2008 and on the road home, I discovered I was pregnant with our second child.  New job, new place to live, new baby, oh what and adventure it would be.

Miss Elliott was born on October 3, 2008 and we would live just outside of Seattle for the next six years.  Of course, as it so often does in life the adventure we had dreamed up came to resemble nothing of what we had planned.  Miss Elliott was born with Tay-Sachs Disease and she would die on February 3, 2012.

I despise the winter.  The cold, and death it brings.  The darkness of Seattle, inundated with it’s never ending rain.  Sometimes it’s just too much to bear.  But in 2013 the Seattle Seahawks began a winning streak that was encouraging and uniting the city, giving all of us something to look forward to, and something to be proud of.  That might sound petty, or stupid, or even superficial but being a part of the synergy of the city itself was electric.  It was as if everyone came together for a common goal.  It inspired, and strengthened, and for me, it distracted.

As the Seahawks continued their winning streak and went into the playoffs I was lucky enough to go to the game in which they defeated the New Orlean’s Saints.  You couldn’t believe the roar of the crowd in Century Link field.  The intensity was palpable.  With just one game left in the post game season, if they won they would be on their way to the Super Bowl.  The previous Super Bowl had been held on February 3, 2013, and marked one year since Miss Elliott’s passing.  Some friends invited us to a party.  Loren said yes before he realized the date, but we kept our obligation and attended anyway despite my desire to remain home in bed.  In the end, I was glad for the distraction.  So this next year, as we made plans to attend their party again, on February 2, 2014, I was happy that our Seahawks were going to be playing and it gave us something positive to look forward to.

Last summer we moved away from Seattle and back to where I spent most of my childhood to what I consider to be my hometown.  Here we are in a new house, with new jobs, and a new school for Skylar, and oh yes, finally, the sun.  But now for the first time since we’ve moved, as we circle back on another year and our Hawks have done it again, I find I miss Seattle.  I miss the energy and camaraderie swirling around the atmosphere.  I miss the unification of all Seattleites in a common goal.

February 3, 2015 will mark the third anniversary of Miss Elliott’s passing.  This thought is especially troubling to me because of the fact that she passed when she was three years old.  Meaning that this year there will come a point at which she will have been gone longer than she ever was her here.  I’m happy that we’ll be going back to our friend’s Super Bowl party again this year, to be there in Seattle with the friends who knew Miss Elliott throughout her life and to cheer on our Seahawks as they defend their title of Super Bowl Champions.  I’m happy our boys made it to the big game once again.  And on February 1, 2015 I’ll once again be happy for the distraction that takes my mind off of the sorrow I feel, especially strong, at that time of year, this year in particular.

It may only be just a game, but oh, for so many people it’s so much more.  Go Hawks!

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.

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