Tag Archives: Grief

An Unlikely Hero

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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?

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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

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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

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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

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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.

Three Years Four Months and One Day

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Benson 6

That’s what June fourth will be this year.  Three years, four months, and one day since Miss Elliott died.  Which also marks one more day than she was alive on earth.  She will now, and forevermore have been gone longer than she ever was here.

It’s hard for me to stomach.  Hard to accept as a mother that my child is gone from this life forever.  The more time passes the more surreal it becomes.  Sometimes I conjure up memories of our life with her and they seem like they should belong to someone else.  Being in the throws of her life, consumed with the medical fragility of her tiny body and the severity of her condition was life as we knew it, but now, having been so far removed from that life for so long that in many ways, although it still feels like yesterday, in others I can’t recognize it at all.

And the nightmares I have because of her death still haunt me today.  For some reason my brain has decided to manifest completely unnecessary and inaccurate guilt associated with her life, and my care for her as a mother.   I dream repeatedly of her existing somewhere in the background of our lives and I have forgotten about her.  Forgotten to feed her.  She is starving.  She is sad.  She is lonely.  She is silent.  And she can’t do anything about any of it.  I fail her over and over in these dreams.

The truth is that in her lifetime I was never without her. She lived cradled in my arms.  I fed her five times a day.  I massaged her arms and legs to help her circulation.  I bent and stretched them to keep her muscles fluid.  I bathed and dressed her every day complete with a matching bow in her hair.   I sang to her.  I took her everywhere with me.  I loved her fully, and unconditionally until the day she died.  And I love her still.

I think these dreams come to me as a symptom of my guilt over her death.  As powerless as I was to stop Tay-Sachs Disease from ravaging her body, and as certain as her future was, I still, as a mother, could not accept that my child would die.  Of course, logically, I did understand it and knew it would happen.  But in my heart, the acceptance of this hard-fast fact has never come to be.

When we wrong our children, when we fail them we’re usually given the chance to explain or make it right at a later date.  With Miss Elliott gone, I do not and will not ever have the opportunity to do so.  So many times my worry takes over and leads to the entrapment of guilt.  Guilt that what if I didn’t feed her enough, hold her enough, massage and stimulate her muscles enough?  Was she hot when I was putting a blanket on her?  Cold when I was taking one off?  I will never have these answers.  Only wonder and only worry.    I’ll never have an opportunity to right my wrongs or do better for her.

The day before Miss Elliott was born I looked at Skylar and said “It will never be just you and me again after tomorrow”.  How I hate the thought of the false security of this statement now.

When I look back on the memories of the years she was with us sometimes I don’t recognize those people.  They seem so foreign.  And it saddens me until I remember all that who we are today is because of who she was.  She was a little girl with a perfect soul and a big message about the beauty and importance of every life, no matter how short, no matter how small.  I will be forever grateful to have been her mother for the three short  years she was here.

A Note on (Bereaved) Mother’s Day

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Miss Elliott and Skylar, to whom I’ll always be, “Mom”.
Sisters

I’ve only recently learned of International Bereaved Mother’s Day, and I have to say that my first thought was that I was not impressed.  After all, to be a bereaved mother you must be a mother first.  The one denotes the other.  So secondly, (here in the USA at least ) can’t I just celebrate my motherhood on the same day as everyone else?  What I need is for my child, my daughter to be remembered and celebrated everyday, not on some pronounced day of solemn reflection that further singles me out from the rest of the mothers.

If you are not familiar with the history of Mother’s Day, you might be surprised to know that it was not invented by the greeting card industry to sell fifty million five-dollar one-liners once a year.  It was actually invented by Anna Jarvis in 1908 to celebrate her own mother, Ann who though she gave birth to somewhere around twelve children, only four of them lived into adulthood.  So the purpose and focus of this day was actually created to honor Anna’s mother due to her bereavements in motherhood.

I should point out that I do understand that healing aspect of this International Bereaved Mother’s Day of being given one more outlet to be able to freely acknowledge your deceased child.  As the mother of a deceased child, society can make you feel that it’s not socially acceptable for you to talk openly about your child the way your friends and relatives talk about theirs.  That it’s actually taboo for you to wish to mention your own child in public merely because he or she has died.  But I personally still felt that I didn’t need any more segregation from myself and mothers of living children.  I felt that I would celebrate my motherhood along with everyone else, on Mother’s Day, as it was originally intended. 

Which is why, as I dug further into my investigation of International Bereaved Mother’s Day I was happy, if shocked to find that it is actually a temporary movement intended to refocus the true meaning of the original Mother’s Day, the acknowledgement of the bereaved mother.  As stated on the official website for International Bereaved Mother’s Day; “If you have experienced the death of one or more of your children, struggle to conceive a child or are unable to fall pregnant at all, this day can often bring up feelings of isolation, unworthiness, pain and sadness. Much of society has forgotten the true meaning of Mother’s Day and fails to support and recognize all true mothers.”

No matter the tangibility of her child, a mother is one of heart and mind first, before she is ever one of physical presence.  A mother’s journey begins long before she gives birth, and it doesn’t end when her child dies.  If you know a woman who is a bereaved mother, please take a moment to be a friend and neighbor to this woman.  Open your heart to her.  Acknowledge the child in her life that you cannot see every day.  Speak their name.  Tell her you remember them, or ask to get to know them.  Ask to hear their stories.  This is the kindest and most compassionate thing you can do for her.

To learn more about International Bereaved Mother’s Day, please visit: http://carlymarieprojectheal.com/

Tales of my Dead Daughter

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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

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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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Portrait of a Mother

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

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