Tag Archives: Child Loss

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.”

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A Brief History of Grief

“Mom, how does this look?” she asked seeking both confirmation and approval. “It looks good,” I tell her. And it does. Now in middle school, on the precipice of becoming a teenager, she’s starting to learn how to do her makeup. I don’t mind her growing up at all. I’m also glad she seems to enjoy many of the same things I do and that we can share those with each other. Then, there are ways in which she is solely her own person. Not I, not Loren, but a new person growing and changing, and becoming someone all her own. I relish it. I am thankful for it.

We, of course, weren’t granted such a happy fate with our youngest daughter. Not only did she die, but we knew she would, which, in the grand scheme of life and parenthood, may have been the cruelest fate of all (for us): living with the knowledge of her impending death at such a young age, and not only that, but before her death was to occur a relentless genetic monster would take away all of her physical and cognitive abilities.

Let me stop right there to make sure that you know that her life was nothing but a blessing to us. Every moment we were allowed to spend with her was a magical time that taught us the importance of unconditional love, and value of our own mortality. And it changed us in ways we’re still discovering only now, four years after her death. Some for the better, some for the broken.

We are strong, it’s true. Sickeningly so. We just don’t want to have to be, that’s the thing. That’s why people who are in our position often hear repeatedly how someone else couldn’t imagine. They just don’t want to. We don’t either, but unlike you, we didn’t have a choice. We hate to hear that you think we’re strong. Especially when we feel anything but. And when you tell us this, you may not realize it, but it often adds undue pressure to our burden. Pressure of an image we feel expected to maintain.

Four years later I know that the choice we had was whether or not to fight this battle together. We chose to do so with each other. And it’s not just that seven years ago, when we were told our daughter was dying that we walked out of the hospital and made a conscious choice to stick together, it’s that we continue to do so each and every day, even now.

Can we just be real? It is not easy. We have problems. Some of the same problems you probably have, but others that whether we would have had or not had we not been through the death of our child is only speculation at this point. The point is, they exist, so what do we do about them?

I think we’ve always tried to be proactive in acknowledging an issue and trying to work through it. I think communication is one of the cornerstones to ours or any marriage. But that doesn’t mean we always practice it. It’s worse when you can’t even put your finger on it yourself. How, then, are you supposed to communicate that to your partner feelings you yourself can’t understand? Especially if it’s something you’re not proud of, or you might even be scared to admit to yourself, let alone anyone else.

We haven’t always been kind to each other, but recently, with both of us separately on the verge of falling apart, we made a change. We both got honest, with ourselves, and with each other. It was a terrifying admission on both of our parts, but also, in some small hopeful way, freeing. A burden began to lift just by admitting our faults, and choosing to do something about them instead of continuing to spiral into oblivion. Neither of us wanted to live the way we were.

To be candid, Loren deals with fits of explosive anger. Deep seeded anger simmering below the surface that began in his childhood, but has been amplified into rage over time by the events of our shared life and the lack of dealing with these existing feelings for so many years. It’s all consuming. It lurks around every corner. It bleeds itself into every aspect of his life and affects his actions and behaviors in an unhealthy manner. No steps can ever be light enough as to not crack those egg shells. It’s something he’s realized cannot be mind-over-mattered through on his own.

I on the other hand have only recently become aware of the anxiety that’s swallowed me up and refuses to release its grip on my mind. In seemingly normal every day occurrences the fear of the what if overtakes my ability to remain calm and collected. To say I worry would be a vast understatement. The need to maintain the upper hand and to constantly reassure myself that everything is okay has turned me into fearful, controlling, unforgiving, judgmental shell of the formerly vibrant person I feel I can no longer recognize. I’m constantly on edge, lashing out, waiting for some other shoe to drop.

He’s become a scapegoat. I can’t admit I’m wrong.

Enough.

Enough trying to be strong.

Enough pretending to be ok.

Enough trying to prove that we are.

Our daughter died, and we are not ok.

It hurts so much.

But we want to get better.

We won’t let this form of grief be our undoing.

Loren has sought out counseling, recently, which has been a life changing experience for him, and for us. He’s gaining the tools to manage his anger, and to work through is feelings in a productive way. I have finally admitted to myself, and to him how swallowed up by fear and anxiety I feel I all the time. Why it is I’m so controlling, how scared I really am. I too, need to address this issue, and I think finding someone to talk to about it and mitigate the feeling would be a good idea for me as well.

We’re not there yet, wherever there is. Though we are getting there. We’re still staying the course. Someone recently asked me when grief goes away. “Never,” I replied. Grief is not a place to pass through and come out on the other side of, but a continual journey once you’ve been set on its path.

I don’t want you to read this and think that we think that we’re so awesome that even when we have an issue we make a spectacle of how awesome we are at working through it. I just hope that if you read this and you have any of these feelings that you can be real with yourself, and maybe even with your partner. I’ve had to learn that there’s no shame in not having it all figured out or under control. The only shame is in letting everything crumble around you without doing something about it. I know you won’t judge us, you can’t. You haven’t lived through our loss. And I want you to know that no one else can judge you, either. So if you read this and you suspect you might be a dark place like we were, please do something about it. It’s a lonely place to be, and I don’t want that for you.

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.

Growing Up Is Hard To (Watch Them) Do

Benson 11

“Mom, it’s embarrassing”, she said as we stood in the driveway. Spoken in her most astute voice with a dead-pan expression of resolve across her face that told me she meant what she was saying. She never minces words. “Ok”, I relented, begrudgingly, but unselfishly. I knew it was embarrassing. She’s in sixth grade now. She’s eleven. I get it. And the truth is, I want her to be independent; maybe not as independent as she wants to be, but I want her to learn to take care of herself, to speak up for herself (who am I kidding, she’s got that one down pat), and to explore the world. I’m just not ready to begin letting go and letting the world get ahold of her, that’s all.

The bus stop is only one and a half houses away on the corner of our street. I walked through two neighborhoods, and across the busiest street in town on my way to school when I was her age. I wasn’t offended, I would be embarrassed too if I were her and my mom was still walking me to the bus stop…all of 150 feet away. When she was younger I was the mom that would call the house of the sleepover to make sure she was “behaving herself”, but in reality it was because I needed confirmation that she was ok while out of my sight. I just don’t know how to not be there with her. How do I stop hovering so she can fly? I suppose that question is old as parenting itself.

As children grow they slowly become less and less under your care and guidance and more and more in control of their own mind and actions. I want this for her. I want her to feel secure enough to be able to make decisions for herself. I want to nurture that strong sense of self that tells her she is her own person who can be accountable for her own life. The kind of nurturing that instills the values I want her to adopt as her own, but gives her room to actually test them out in order to adopt them.

I want to be her best friend, not some overbearing annoyance. I want to give her room to come to me when she needs me, and not have to struggle to run away just to take a breath for a moment of solace away from me. I know that all parents have to find a way to keep that fine balance as their children become young adults, but for some reason I think parents of child loss generally have a more difficult time finding and keeping that balance.

When Miss Elliott was alive she needed me every second of every day for her every conceivable function. And not only are we mothers and fathers of severely disabled, terminally ill children in such high demand in caring for our children, but inherently we suffer their loss. Suddenly our established routine of being so needed diminishes drastically when that happens. We have suffered the worst nightmare a parent can have; our child has died and our responsibility as a parent (to them) is over. How do we move on with our other children? It’s an otherwise illogical thing to try to process, when generally one is once a parent, always a parent.

I’ve discussed this topic at length with other mothers in my position, most notably in our Women’s Group at the annual family conference for parents of terminally children of lysosomal storage disorders. One of two outcomes seems to transpire in each family’s loss. Some parents become hyper-protective of their other children, while others become disengaged, and in some ways even push their children away in an effort to distance themselves from the potential of yet another loss. In either scenario we’re acting on a vain attempt to try to control the future, but one that is ultimately born of the experience of love and loss in the first place.

You see, grief is something that we parents of loss live with, and will live with for the remainder of our lives. It affects every facet of and person in our lives as it is transmitted through us. It is a constant struggle to recognize, rationalize, work though, and remedy the ache in our hearts as it applies to those facets and those people in order to heal and not to further harm them, including our other children.

Children don’t ask for any of the circumstances they endure as children, be they good or bad, but they certainly do deserve parents who do everything in their power to prevent as much of the latter as possible when it applies to their growth as healthy human beings. And they definitely deserve parents who do not contribute any negativity or hindrances to that growth. I can’t ask my daughter not to grow up. I’ve already lived through the alternative. My responsibility to her is not to make her my pet, something I own and control, it’s to grow her into the amazing woman I know she is on the path to becoming. To help her realize her potential, and do everything I can to help her develop the tools necessary for successfully navigating life, both the triumphs and challenges. Ideally with a guarded, but not hardened heart.

When There Were Two

Sisters

“Because we have ‘only’ children”, she said. I can’t remember my response now. I’m sure it was something pleasant and agreeable, but in my head I was shouting that I don’t have an ‘only’ child. I have two children. And yet, the fact remains that my not-only child, is still, in many ways forced to grow up like one. After all, she is the only child currently living in our household. But in her heart, she knows she has a sister.

What a strange way to go through childhood; knowing you have a sibling, even remembering them, but not sharing in the sibling life together. Is it what children who find out they have half siblings somewhere, or come to know of another sibling given away for adoption before they were born feel? I don’t know. All I can know is that in our house, our oldest daughter, may be our only living daughter, but she’s not our only daughter.

Even as the mother of two girls, I’ll never know what it’s like to parent them together, in the conventional sense, anyway. We were blessed to have three years and four months where our two girls shared their early lives together, but even then we didn’t have a typical lifestyle. There was no fighting, no crying over unshared toys, no complaining about the other when one didn’t get her way. And while I longed for the normalcy of that life, I still cherished the one I had. It may not have been ‘normal’ at all, but to our oldest daughter, it was. It was all she had ever known.

There may not have been moments of playing dolls, or blowing bubbles together, but there was holding hands, and reading stories, and so, so much more that made our children’s lives wonderful. Even in our youngest daughter’s death, a sense of joy and peace was present in my ever-so-resilient older daughter. A gentle understanding that our sadness was all for us, and not for her younger sister who was now free from the earthly constraints of her immobile body and mind.

I see a lifetime’s worth of compassion and tenderness bestowed on her. I see tolerance, and understanding. I see acceptance, and most of all, I see an immense amount of love.

When I hear or read of ‘typical’ mothers complaining over the blessings in their lives I become ruefully angry with them. I want to shake them and tell them to stop. To get a grip. To woman up, so-to-peak. This is not to say we don’t all complain over ridiculous ‘first world problems’ in our society and culture from time to time, and yes, we all ‘vent’ once in a while too, but when it comes to complaining about your very children for being just that – children, especially the ones you have planned for, prayed, for, wanted more than anything who are happy and healthy my acceptance and tolerance level dips dramatically. How dare you.

Narratives that sound like, ‘no sleep, so tired, two kids at once, changing diapers, spit-up food, just need a break, etc…’ frustrate me immensely.

What I would have given to have those ‘problems’. Mine sounded more like, ‘seizures, choking, inability to chew or swallow, medication administration, can’t sit or lift head, can see, can’t think, PT, OT, neurology appointments, etc.’, and the part that really gets to me the most is never did I complain about my child’s life. I would beg for years of sleepless nights just to have ten more seconds to see her and hold her in my arms again.

This is my hindrance. My own bias, and personal issue. I get that. And would I have been one of the women complaining about my ordinary everyday life had I not had the experience of living with a severely handicapped and terminally ill child? I very well may have. It’s just that now I know better. And all I can do is be thankful that in the end those other mothers have no idea. Their children will grow out of sleepless nights and diapers. They will become little people who do the usual little people things. They will fight with their siblings, and go to each other’s ballet recitals and soccer games. And here in our life we and our not ‘only’ daughter will carry on, as she plays alone, not sharing toys or splitting Christmas gifts, the unbroken focus of our attention, just the three of us, holding the memory of the time when there were two, when we were four.