Tag Archives: Life

Help: On the Horizon vs. At your Door

It had been a particularly trying day. Disastrous, really. I had come home from grocery shopping in the middle of winter to find frozen pipes that had busted and thawed, and water was now gushing from the ceiling in my laundry room onto the wood floors below.

The valve to shut the water off to the whole house had frozen in place outside in the ground. After struggling unsuccessfully to wrench it free, I deemed it a lost cause and ran to the garage where I dumped the Rubbermaid trashcan full of garden tools onto the floor and frantically ran to place it inside the house to catch the water pouring from above. I opened the back door and began sweeping the water covering the floor outside.

Then I called my husband at work and screamed through frustration and tears into the phone; “GET HOME NOW”.

Taking to social media later in the day to lament and seek out commiseration, I suppose, I quickly had a message from my friend, Halcyon.

“Can I bring you dinner?” she wrote.

My immediate instinct was to respond with a no thank you, a how thoughtful, or that I appreciated it, but we’ll be fine. Then for some reason, I just accepted. I did want that dinner. It would help. It would be one less thing I would have to worry about in the midst of such a terrible day, and it felt like a win.

We were no strangers to acts of kindness at this point in our lives. Our daughter’s terminal illness and death were humbling in ways we never even considered needing to be humbled before her life, but the general idea of utilizing the village before you seems somehow, almost un-American. As if accepting help is an admission of our inability to pull ourselves up be our own bootstraps, rather than an act of love and concern for other humans that makes the world go ’round.

She brought warm soup and fresh baked soft bread from Panera (one of my favorite places). It was delicious. And so appreciated. The real gift she gave, however; was not the meal itself, and not even the act of caring, but the outreach she exercised to begin with. She didn’t let me know she could help if I needed, she didn’t even ask what she could do for us. She took action, and offered something specific, something concrete. She then placed it in a time frame and set to work on following through.

When facing life’s challenges, simply wanting to help or letting someone know you’re there to help is often not enough. Don’t make vague statements or plans that don’t amount to anything. While the thought is appreciated, the action always speaks louder.

When someone is struggling with a difficult situation, the burden of need is already on their shoulders. Don’t add to their overflowing plate by asking them to tell you how you can help. Often, it’s just too much for someone to even consider tying to navigate the map of help-need to be able to organize or convey those needs to you.

Perusing social medial recently I found a message from a friend, posted on her personal page, as a cry for help. She posted the following picture with the message, “Definitely me sometimes”.

rsz_quote_2 (1)

What followed, to be honest, as someone having been in need myself annoyed the crap out of me. The response, even though positive, genuine, and seemingly in an effort to be supportive, just wasn’t.

rsz_1quote_message

Simply telling someone you’re there for them simply doesn’t do anything. If you’re going to talk the talk, you’d better be willing to walk the walk and actually be there. Don’t wait for a friend to ask for help. They are already overwhelmed, so they most likely never will. Just take the initiative and go out of your way to be there without waiting to be asked.

I specifically remember the phrase “we support you” being uttered to us repeatedly when Miss Elliott was alive. How? I always wondered, because with certain people those words seemed to be all there ever was. Nothing to back them up, no outreach, no follow through.

What was interesting to me about the respondent’s message to “call me” was that someone else, yet another friend, liked the comment, in what I can only assume was a show of solidarity, or a me too response. But even when my friend reiterated that she always needs someone, and implores her to please just come over, the respondent again defaults to asking the person in need to call her.

Don’t do this. It’s painfully obvious that this person should have picked up the phone at that very moment. Should have gotten in her car and driven over. She should have done anything worthy of being called helpful, but what happened here instead was that this person did, literally the least she possibly could have done, and probably mentally checked off a box in her mind that allowed her to continue in her thinking that she reached out, did good, and helped. She didn’t.

Sometimes in our attempts at care toward others we place them into our box, our comfort, zone, rather than stepping outside of that zone ourselves to look deeper into what they really need. I think we usually just tend to look for what may be easiest for us to offer. We fail, so often at truly going that extra mile.

This interaction would have left me feeling even more alone.

There are many things that everyone needs, so make a list of what would help you because chances are, it would help someone else too. Some simple suggestions of ways to help that I like to give are:

Mow the lawn
Wash and fold the laundry
Clean the house
Let them take a nap or get a hot shower
Bring dinner
Take the kids somewhere for a bit (a movie, to the park, etc.)
Bring groceries
Run errands
Help coordinate appointments
Go to their house to visit
Help them have a night out aloneand most of all
Just listen without trying to fix their problems

Grief Doesn’t Die

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Memes and GIFs are two words that came out of virtual obscurity…literally, in the last several years and are now household words on the tongues and lips, assuming you can correctly pronounce them, of seemingly everyone in America. Pop culture and the world of the internet have wedged their way into every detail of our lives for better or worse.

Almost daily I find myself and my husband or friends texting these quippy little quotes back and forth to each other. Some are just either so profoundly fitting in a situation or, more likely, just incredibly funny.

Of course you can find memes, often comical or at least satirical, to suit any situation; political issues, to family gatherings, workplace frustrations, etc.. But sometimes there are those meant to speak to the deeper feelings we find ourselves dealing with when words of encouragement are needed.

As the mother of a child who has passed, I see a lot of these posted on Facebook, Instagram, and even Pinterest from others who have traveled the same road I am on myself. And occasionally I post them too. Once in a while one comes along that just speaks so clearly to how I’m feeling that it feels like it could’ve been taken from my own personal experience. I guess before the modern day meme came along this duty was reserved for song lyrics sang (specifically to us) over the radio or the occasional Hallmark card – sent via snail mail, of course.

All too often though, I find that while the sentiment may align with my feelings, the execution is lost on me. A metaphorical ball metaphorically dropped, if you will. I recently ran across one of these little posts which proclaimed that “When you can tell your story without crying, that’s how you know you’ve healed”.

meme

Now, “healed” is a relative term to varying personal degree for everyone. While it may be true for some, no blanket explanation could ever cover such a wide ranging, deeply emotional, and profoundly personal topic. I just want to say to the thought expressed in these seventeen all-knowing little words: bullshit.

If this has been your experience and you have gotten to this point, I am so utterly happy for you and I encourage you to celebrate the place you’re in in your journey and the accomplishment you’ve made. Hopefully the peace that encompasses it is a blessing to you in your stay. I can only account for my own experience, of course, but what I can say about my journey is that the absence of tears runs so much deeper than being considered healed at the lack of their presence.

I will never be healed of the loss of my daughter Not in the conventional, physical sense anyway. Not until my time on this earth comes to an end and am I reunited with her in spirit. Until that time, I am forced to wander around broken, like may of us are. Shattered like a mirror due to myriad circumstances we’ve encountered and endured. No matter how well you glue the pieces back into place the evidence of the break remains a part of the structure forever. The mirror may be reconfigured, but it will never not be broken. Broken is not bad or wrong, it’s simply the sum of the experiences that have taken you to become the person you are today. With rich experiences, both good and bad, we’re all weaving the intricate tapestries that are our lives.

Does that mean that healing cannot happen? No, it doesn’t. For some it may. Yet others may unsuccessfully or unwittingly chase it for the duration of their existence. Some may simply adapt to the new being they have become. And still many more find their new identity in the pieces of their life and spend the remainder of it romancing and nurturing their newfound brokenness, essentially becoming its prisoner. All of this in both positive and negative, healthy and unhealthy ways. It’s just that tears are not necessarily the barometer of health.

Not expressing tears for me, simply means I’ve become accustomed to my situation. I am used to it. There is no longer any shock or novelty in child loss in my life. I am desensitized to the idea of what most people would find too horrific to even entertain in their mind, i.e. the “I can’t imagines” because I have already lived it.

It’s simply another form of survival. It’s part of how I mitigate my pain. I have many wonderful aspects of my life to focus on, though they still doesn’t lessen the pain I feel in her loss. I just refuse to let that pain swallow me up. I can’t well up and break down every time my daughter’s name is mentioned or someone asks me how many children I have. In every part of my life; my job, my writing and speaking, my social relationships, my daughter, and her death are front and center. Not only would it not behoove me to break down at every retelling of her life’s story, but (for me) it wouldn’t honor her, either. I just don’t let tears overtake me. That doesn’t make me any more or less healed than anyone else. It’s simply a personal style of functionality.

I carry on with my life. I am happy, healthy, and productive. I tell her story a hundred times in a row and don’t shed a single tear. And yet, not always, but from time to time I may well up at the site of a dress hanging on a sales rack that I wish I could buy her. Or I pause to catch my breath whenever a particularly difficult hymn is sang during church services.

Grief and pain coupled with crying, though certainly not mutually exclusive, are not necessarily married to one another either. And with a situation so personal, so devastating, who is to say that everyone I interact with is worthy of my tears? For me, my tears are an intimate expression of my love for my daughter, and something that I’m accustomed to compartmentalizing, not sharing openly.

When it comes to grief, of any kind, please don’t oversimplify these nuances by applying generic thoughts on such a complex topic. There is no handbook to reference. There is no cookie cutter for grief. Someone may not be meeting what your expectations of grief are, but that doesn’t mean that they should adjust their expressions, barring physical and mental harm, of course. More likely it’s an adjustment of expectations of those grief expressions, and a more open discussion that’s required for deeper understanding.

Most importantly, just be kind and supportive. Offer a listening ear when needed, and don’t feel that it’s your duty, or even within your power to ‘fix’ them. Just allow your friend, coworker, or family member the time, space, and respect to grieve in the way that’s comfortable for them.

I encourage you to share you thoughts on what your personal barometers of healing have been in your own life, in regard to any event you’ve experienced. Let us come together to transform
the ideas of what both grief and healing look like to the world outside our doors.

Better Than Me

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“She’s beautiful!” they tell me. And I know she is, not just in my eyes, but by all conventional American standards, she is. Chestnut eyes, straight nose, high cheekbones, supple lips, long flowing dark, but sun-kissed hair, and easily tanned skin. She’s gorgeous.

“She’s a mini you, gorgeous like her mommy”, they say.

“Daddy’s got his work cut out for him,” they continue.

“Hope he carries a bat”, it goes on.

And it’s fine. I beam with pride at the shallow, and ultimately meaningless compliments, like any other mother would. But she’s so much more than that. And that’s the true, total package. She works hard, brings home straight A report cards. Is artistic, and creative, and thinks outside the box. She’s a friend to everyone, caring, compassionate, and thoughtful. Easy going, quick to lend a hand…obviously I could go on and on.

Skylar

Skylar, Age 11

My point is, that I relish it as my own success. As a mother, I want nothing more than the best for her and for her to be the best, at everything. I’ve never understood the theory that mothers and daughters clash because once a daughter comes along the focus is suddenly taken off of the women who had it on her since childhood. Essentially that her mini-replacement has come along and she’s no longer the star of the show.

What?! As a mother I truly don’t understand this. And I think if you feel that way, you probably shouldn’t have had children at all, at least not in this stage of your life because it seems to me that if you aren’t able to put them before yourself you can’t have their best interest at heart. I want my daughter to be prettier than me, stronger than me, smarter than me, and more successful. I want her to have it ALL.

“I’ll bet she looks just like you at that age, Becky”, someone recently told me. Ha! She couldn’t have been more wrong. I was gawky with no style, big glasses, and a bad perm. No, my daughter seems to have not had to endure the same awkward phase that plagued me from the ages of eight to fifteen.

Me Age 10

Me, age 10 with mid 90’s
style choker and Seinfeld Puffy Shirt.

Conversely, I’ve also endured comments related to my daughter’s looks as more of a consolation prize rather than a compliment. When Miss Elliott was alive, I distinctly remember one person, upon learning of her terminal status remarked , “Well she sure is pretty, and you can love her anyway”.

WTF?

I mean, thank goodness she was pretty too, right…or there would be no reason to love my dying child as I love my heathy one.

Miss Elliott, age 3 years 3 1/2 months

Okay, I know people don’t mean the stupid things they say to sound so ridiculously degrading, but honestly it’s so tiring that sometimes I would rather they just stay silent. And if they simply can’t muster up that ability and feel compelled to have to say something, let it be a simple I’m sorry.

I know you can’t imagine. I know you don’t know how I do it. I know (insert your own meaningless platitude here), but none of it matters or changes the situation. A simple I’m sorry, is really the only thing of value you have to give me anyway.

And for the record, Miss Elliott was pretty. She had bright green eyes, milky smooth skin and hair far lighter than I could have ever imagined any of my children being born with (all three thanks to her Daddy’s Irish ancestry). And I loved the hell out of her. I still do.

And I wanted better for her, too. Better than for me. And do you know what? She got it. She knew nothing in her Three Short Years but unconditional love. She never endured pain, rejection, or abuse. She lived and died a perfect being with a pure soul.

These things, more than just our little girls being pretty should be what we celebrate as accomplishments in parenthood, and life.

A Fixable Faux Pas

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As a mother, there’s not enough bubble wrap in the world for my liking. If I could have an infinite supply to wrap my daughter in for the duration of her (very long, and very happy, I hope) life, of course I would. Like I said, I’m a mother. Such is not reality. And in any case, I am aware of how that would prevent her from having as many good experiences as it would cushion the bad, I would assume. There’s never an easy way to find the right balance of letting go and letting grow, to protection and inadvertent smothering as a parent.

Three weeks ago a call came from my sixth grader’s school that she had tripped and fallen in PE while playing soccer. The teacher had helped her up, dizzy and pale. Realizing there was something to be concerned about given her reaction he lead her, slowly, up to the nurse’s office and immediately called me at home.

As I sped through the neighborhood at Mach Ten, daring someone to glare, gesture, or any police officer to pull me over, I was there practically before I had hung up the phone. My girl is a trooper. She never cries or complains, to the point that when she was younger we would have to tell her that it was okay not to be okay, and she needed to let us know so that we could help. A hard-headed quality that she comes by honestly. And she’s resilient. Thanks in no small part to her sister’s terminal illness and death.

That, of course is something that I never expected her to have to endure. Something that has most certainly shaped her young life in myriad ways, and will remain with her forever. Haven’t we all found our children’s childhood’s shaped by unseen factors that we never planned for and most certainly hoped to avoid? But alas, steel is only tempered by fire. Most parents of children who have passed seem to feel a heightened level of fear, be it rational or irrational, over the loss of their other children. That’s not so far reaching, if you ask me, merely a product of our experiences.

A trip to the sports medicine clinic, a few X-Rays, (broken radius) and a nice purple cast later we were on our way. It was a clean break, and a routine set. Everything was right on track, until two weeks later when another X-Ray showed the bone veering off course and not reattaching correctly. We were informed then that the next step would be surgery.

I may have been in actual shock to hear this and the wheels began spinning in my head. I was upset. Terrified, and thoughts of doctor’s offices, bad news, and hospital visits with Miss Elliott flooded my memory. We had had enough of all that to last a life time, but not with Skylar. She was my healthy child. I tried my best to remain calm in front of her. I didn’t want to further upset her with my own hysteria, and I needed to rein it in for my sanity’s sake as well.

Two days later at six am we were in the hospital prepping for surgery. I was nervous of her undergoing general anesthesia, as she never had before. She had never had anything wrong before, ever. I tired to hide my tears as they wheeled her back, IV in her arm, swimming in the hospital gown they put on her, and walked out to the waiting room.

I had brought a book, although I knew I couldn’t focus long enough to read a single sentence the moment I took a seat. She was now a color coded number on a monitor in the corner of the room, to which my eyes were fixed. It would tell me when she left the surgical prep room for the OR, and then once she was moved to recovery. I watched that screen like a hawk. Shaking with nervousness so profusely that a receptionist mistook my jitters for being cold came over to offer me a blanket.

In just thirty minutes, that felt like nothing short of an eternity, she was already being wheeled into recovery and the nurse was calling me back as she was waking up. A new blue full-arm cast encasing three pins now covered her newly set arm. Awake

She was groggy and in pain, but she was ok. As another Tay-Sachs mom put it, “Hope she feels better soon, sad for her but happy for you as a mom she has something fixable”.

I was certainly thankful for fixable, too.

Numbing the Pain

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They say it only makes it worse when you finally feel it. Addiction is a prison of its own making. A cycle that’s hard to break, to say the very least. And when loss or grief is added to the mix the welling up of emotion surrounding the issues at hand often seem to propel one further into that cycle, before if ever, propelling them out of it. Mackenzie Johnson is the daughter of a dear friend, Lynette Johnson. You may have seen some of my writings referring to Lynette in one way or another before, but you’ve undoubtedly seen her pictures. Any of the photographs of my family on this site are Soulumination photos. Lynette is the founder of this wonderful organization that provides the most lovely, candid, real-life photo shoots, free of charge for families of terminally ill children. Families like mine.

I met Lynette when living in Seattle, shortly after Miss Elliott was diagnosed with Tay-Sachs disease. A friend I’d made online, another mother of a child with Tay-Sachs had recommended I contact Lynette and Soulumination for photos since we both lived in Seattle. I found out that Lynette had traveled to the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference nearly every year, and that she had personally taken the photos of nearly every family in this community across the country, and here she was right in my own backyard.

This vibrant, caring woman who was such a bright and shining light of positivity in the lives of so many families suffering through anticipatory loss or grief itself, was stricken with Cancer. And what’s more, at the same time, her daughter, McKenzie was suffering through the depth of years of addiction and unable to come to terms with her mother’s illness.

In her own words below, Mac describes the process of finally feeling all those feelings she strove so hard to keep at bay for so long, and the impact they have on her now as she’s navigating her way through feeling them authentically and coming to terms with (and finding out) who she is.

“For years and years I wouldn’t let myself feel anything. When one drinks it shatters and suppresses all feelings, the good and bad ones. I did not realize exactly that this is what I was doing. It was a long time in the making, but eventually I found that out for myself.

All those years later when I got sober, it was the pain that hurt the most. Foreign and new it crept in and for the first time, I was powerless to stop it. Pain over the realization of what I had done over those years, pain over my mom’s recent cancer diagnosis. Pain over deaths I never allowed myself to grieve. When my grandparents died one by one, I hid away, not able to join in proper grievance, for alcohol was my comfort and my pain. My last surviving one shares in my disease. It goes untreated, and still I cannot connect.

I knew I drank differently from the very start, I also was aware that I was highly susceptible to becoming an alcoholic. I was already familiar with it because it runs in both sides of my family. Once I started drinking I could not stop. To have one or two drinks is impossible for me. Soon I was drinking every day. I noticed that I was different from most of my friends; my tolerance was greater and I had no end point. I would drink until I passed out. This kept me from visiting much or living near my family. I did not want them to be around this, to know this part of me. I also did not want them to try and stop me, and I knew they would. I made myself independent in every way so they could have no say in the way I lived my life. Until the way I lived my life would lead me very close to death.

When I found out my mom was diagnosed with lymphoma I got drunk immediately after getting off the phone. I maintain that my mom’s diagnosis got me to such a bad place that I finally accepted the help that had been long offered me. One day soon after, I woke up in my boyfriends’ bed, where I had not gone to sleep and I looked down at my wrist. It had happened again, a hospital bracelet. And no memory of it. I went to my phone and texted my sister. My recollection of that text is send me anywhere you want. It probably did not say that exactly. I then poured myself what I knew would be my last drinks. I was passed out by the time my sister had flown in that afternoon.

I was living in California when my sister came down to pick me up. We were going to a treatment center in Canada. I refused to stop in Seattle overnight because I thought I would change my mind about going, but I said we could still stop for a moment just to see mom. We stopped at our childhood home. Mom came out, very weak, sick, and bald, using a cane. She hugged me and whispered in my ear “I’m so proud of you.” How could she have been proud of her alcoholic daughter? At the time it surprised me, but gave me hope. It was not until much later that I knew exactly what she meant.

I’ve been sober for almost four years ago now, but the feelings didn’t flood in for me. They have never come easy for me. I’m still finding them today, still finding ways to express them. I still don’t like to feel them sometimes. I like to shove them away, to not show you that I can be vulnerable too, that I have feelings too now. I can cry in front of complete strangers, but not in front of my family. I struggle with relationships with those who are supposed to be closest to me, for it is them who can see the real me. And sometimes I am unsure of who that really is. Vulnerability is a scary word for me, when it should be one of empowerment, strength, beauty. But a part of me struggles and believes being vulnerable to be weak. What will happen to me if those I love see my weaknesses, my feelings, my shortcomings, struggles, my pain? They will only love me for them I am sure.

After all these years of struggling with acceptance, I know that I still haven’t let my feelings on my mom’s diagnosis fully surface. It is hard for me to listen to her talk about it. I refuse to touch her nodes when she wants to see if they have grown. I don’t know why. Maybe if I don’t then it means it isn’t real, that I can disconnect a little longer, protect myself from the pain.

She has been through treatment twice now and will more than likely venture into a third in the near future. When I agreed to my own treatment she was already in chemo. She was very weak and very sick, so sick that she vows she will never do chemo again. I honestly believe she would rather die.

I am a work in progress, I will attend meetings the rest of my life. I will work for my sobriety and sanity the rest of my life. For me there is no cure, only recovery. I spend a lot of time in the mountains now, alone or with a select few other people. I cannot describe it but it is special and spiritual for me. I also believe it is necessary for my being. I literally carry a lot of weight on my back out there, a burden I can control. I look at myself every day, my actions, intentions. I am far from perfect. I see myself do things and while I am doing them I know that they are not who I want to be. I try not to do them again. I try speak up when I am hurting, when I am sad, when I need help. It is hard. I have seen a lot of loss, from cancer and from addiction. I cannot control what my mom’s disease will do, but I can control how I act today and how I love today. I refuse to numb the pain anymore.”

Mac
McKenzie, with sister Llewelyn (center), and mom Lynette

McKenzie is raising money for her mother’s Big Climb effort to benefit the Leukemia and Lymphoma Society in their continued dedication to fund research for a cure. You can join Mac at the website below and offer your support as well.

http://www.llswa.org/site/TR/Events/BigClimb?px=1651338&pg=personal&fr_id=1510

The Remnants of a Life

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I bought a desk this weekend. I had been needing one for some time. I work from home, and in addition to that, it would also be great to have a place carved out just for me to do my writing. A place where I can sit, in solitude and think or clear my mind. Focus on the words in my heart and put them on paper, or the internet, as the case may be. A creative space sectioned off from the rest of our home; like the sofa downstairs in front of the TV where I currently sit, feet up on the coffee table, laptop on my legs in our family room.

It’s not an office, per se, it’s also the guest room. And until last year it wasn’t even that. It was, in what turned out to be nothing more that vain hopefulness, (if such a thing exists) a pip-dream perhaps, our son’s room. A boy’s bulldog-brown painted twin bed, and matching dresser adorned the space where dinosaurs covered the bedding, curtains, and walls. After nearly three years of pouring out our heart and soul, not to mention time and money, into our pursuit of adoption it was time to face the fact that no son was to be called our own.

We simply couldn’t expend any more time, emotion, or energy to what had not only been a fruitless, but also psychiatrically draining endeavor. And I couldn’t look at that empty room a moment more. Out it all went, the day I decided to make it so, and a guest room, with a queen sized bed, night stand, and new décor replaced it immediately.

This weekend, I finally added a desk. And in doing so was able to clean out the old filing cabinet that now sat in the guestroom’s closet. A long overdue exercise in organization came about today as I went through the paperwork inside of it.

And there, tucked away inside the drawers were the remnants of a life. Mountains of paperwork I haven’t looked at in years. The new family resource packet from the National Tay-Sachs and Allied Diseases Association, the organization I now work for, that I realized only today, during my daughter’s illness, during her life I never even opened or looked at at all. Expandable file folders filled with medical information. Assessments, intake evaluations, and numerous other documentation relating to Miss Elliott’s diagnosis of Tay-Sachs disease, and care afterward. I found forms for orthotics, medically necessary seating and mobility information, recommendations for such, medication lists, notes from doctor visits, appointment cards, insurance statements, bill after bill for services rendered; neurology, genetics, feeding therapy, physical therapy, occupational therapy…and on and on…

Paperwork

Why did I still have all of this? Why had we brought it with us when we moved? Why hadn’t I gone through it until now?

I guess I just hadn’t tackled it yet. Little by little. Not that long ago this was our life. These regimens were our routine; our known normal. It’s odd to realize how little our lives now resemble the one we were so accustomed to just a few short years ago. And it’s strange how these things, that all add up to medical fragility, immense care, time, and love, are now utterly meaningless. One thing you hear from families of medically fragile children is how that when their child is alive these things come to embody who they are, and once they are gone, they’re just a symbol of the disease, not the child. Nothing but a stack of papers exists, in physical form, as the remnants of our daughter’s life here on earth. And day by day the reminders of their being gone, the lack of a physical presence creeps in and take over our lives. Like the desk, or the guestroom, which would have been her room had she still been here with us.

But, out they went, that stacks of papers. We don’t need those remnants to be able to remember her, like some shrine to her physical being. She’s not there inside of those items anywhere. They may be tangible, but they’re meaningless. She exists in our hearts.

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 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.”

Growing Up Is Hard To (Watch Them) Do

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“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.

Holding On and Letting Go

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When you get a phone call that your ninety year old grandmother is in the isolation unit of the hospital with double pneumonia and a “leaky” heart valve, you go. It doesn’t matter what time of day it is or where she is, you just go. When we received this call about my husband’s grandmother two nights ago in the late evening we made arrangements to get on the road to go see her right away. Luckily she only lives a couple of hours away and we could be there shortly.

The time in the car was fraught with, what ifs? It had been four, maybe five years since we had seen Grandma Benson. Instantly, Loren felt guilty over this fact. Some family issues had caused tension in the past and things had not been the same these last few years.

Loren, his brother, and his mother were all abandoned by his father when the boys were just one and three years old. I don’t say that to be dramatic, but I won’t mince words, completely abandoned is what they were. He decided to walk out of their lives, as well as the lives of the rest of his family and never looked back for no other reasons than selfishness and cowardice. There were never any stray birthday cards, random phone calls, or sporadic visits. They just plain and simply never saw him again. His mother tried over and over to take him to court to at least make him financially responsible for the children he knowingly and willingly helped to produce and then walked away from three years later. But for a dead-beat who mainly worked under the table he always claimed he didn’t have any money to pay with and couldn’t produce a paycheck for the state to garnish so no financial support was ever given.

Their mother, suddenly finding herself alone with her two young boys went to school, earned her master’s degree, and became an artist and teacher. Their whole childhood she made a concerted effort to keep the boys involved in their grandparent’s lives. Time went on, the boys grew up, and became hard working men with loving, stable families who adore their children and are there for them in every way.

Then one day we hear from grandma that “Michael” had been stopping by to see her. A rift was born. Grandma forgives her son, of course, in the way that only a mother ever could. I’m told grandpa, whom I never met, wouldn’t be so lenient of this transient’s sudden resurgence, or her acceptance of it. We certainly weren’t. No one felt he had any right to access even the smallest corner of the boy’s lives. No one could stomach the thought of him in such close proximity after all these years of nothingness. What did he want? Why was he there?

What right did he have? What did he think as he sat in his mother’s house and gazed at her pictures on the wall? Did he just keep pretending his children didn’t exist? Leary of ever running in to him, and grandma misunderstanding, thinking their mother had told the boys (men in their thirties by now, mind you) not to see her anymore because of Michael’s presence, their time together over the holidays, and other visits and phone calls became strained, and eventually nonexistent.

We arrived at the hospital, flowers in hand, and grandma recognized Loren right away. Ninety years old, and still sharp as a tack and feisty as hell. Skylar had gotten so big, she had said. And she asked Loren what he was doing all the way over here (in her town). She had been in the hospital for almost two weeks. She told us how she was feeling, and talked about how bad the hospital was. The male nurses whom, she presumes must not be able to become doctors, and are settling for nurses instead. The constant poking and prodding. She doesn’t like the food, it’s bland. We offered to go out and get her anything she wanted to eat, or otherwise.

“Oh no,” she said. “Michael’s been bringing me KFC and Arby’s.” She floats his name across the room as if it’s nothing.

Stunned, Loren turns white. I know what he’s thinking, but we don’t say a word to each other. We had no idea Mike was still hanging around. Would we have to worry about possibly running in to him here? I don’t know how Loren would react. I don’t know if he could handle it.

The nurse comes in to start an IV. She looks at Loren and says “Are you Mike? I’m supposed to call Mike”.

“No, I’m not.”

If she only knew what a shocking question that was. Loren excuses himself to uses the restroom, but comes back shortly thereafter. “I got spooked,” he tells me. “I saw a man standing at the end of the hall that I thought looked enough like me that maybe I should know who it was. He just stared at me strangely until I turned around and came back.”

I’ve never seen a picture of Michael, and any of the ones Loren might have seen growing up would be thirty years old now. We stay for a while and chat with grandma some more. We tell her we’ll come back when she’s out of the hospital and take her to lunch. We write down our address and phone numbers for her, again, just in case they had somehow been misplaced over the years. It’s clear that she needs to rest, so we go. We ask the nurses to please notify us if her condition changes.

After we get to the car Loren tells me, “I couldn’t believe it when she said my dad’s name. I don’t know what I would have done if he had walked in there. I mean, they don’t even write movies about stuff like that,” he says. ” Who knows what kind of response you’re supposed to have. I don’t even know what the appropriate thing would have been to have done. I guess I would have just kept calm, and told grandma I love her, said goodbye, then left. She doesn’t need there to be a problem. I probably would have just ignored him, treated him like the stranger he’s made himself to be.

I’m glad he didn’t show up. And I’m glad I got to see grandma. I’ve been feeling guilty about not seeing her these last couple of years anyway.”

On the way home we discussed the reverberations parental abandonment causes for generations in society. The brokenness in children that leaves them unknowingly unable to function properly and all it’s many examples projected in abuse, neglect, mistrust, lack of intimacy, inability to form meaningful bonds, sexual promiscuity, drug and alcohol dependence, etc.

Broken homes, broken world.

In Loren’s case, he had no idea his lack of a father had even affected him until he became one himself. It’s been a painful eye opening road of acceptance and healing ever since. We talk of Miss Elliott. A child, so helpless, so innocent. How could anyone just walk away and never look back? He doesn’t understand it, couldn’t even begin to imagine how someone could commit such an injustice toward their own flesh and blood, a child nonetheless.

I’m proud of my husband for letting go of the anger and feelings of betrayal by putting others before himself. I’m proud that he doesn’t let his childhood define him. I’m proud of him for visiting grandma even though Michael could have shown up at any time. I’m proud of the husband and father he is: a bigger man, a better man, his own man.

New Year, Same You

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As the end of December nears we’re busy scrambling to end what was, and eagerly looking forward to what (we hope) will be in the new year, we also stop to fondly remember days of auld lang syne, or “times long past”. Auld lang syne is the fond remembrance of those meaningful times we’ve had, and times we quite possibly yearn for still. This year’s-end anthem has always made me particularly melancholy. I doubt I’m the only one. As we move forward and turn away from the old and toward the new, it’s also only natural to want to keep something of your experience with you to carry over into the what will soon be.

In some ways these lyrics also feel like a warning, or at least a cautionary tale:

“Should auld acquaintance be forgot and never brought to mind?
Should auld acquaintance be forgot and days of auld lang syne”.

Should we get so wrapped up in impending change that we forget what was the past? The song implores us not to forget what was because before you know it you’ll be looking back wishing for it once again. And by this point you’ll have most likely moved so far away from it that you realize it has slipped through your fingers long ago. The caveat here, of course is that we can also become so consumed with the past that we have just as much difficulty looking forward as others do looking back.

Things change. The world changes. You change. And nothing can stop it. Sometimes you don’t recognize the changes reflecting back at you in the mirror until you look back at an old photograph and pick out the comparative differences. And then again, sometimes you’re painfully all-to aware of the changes you’ve experienced in your life.

Photographs in my life from three, four, five years ago and more show a smiling family of four. Photographs today are sometimes painful examples of how one of these family members, who now exists only in a memory, is most often represented by a picture in a picture (as in this blog’s header itself). Auld lang syne.

Everyone seems to be forward focused this time of year, making resolutions about their new year and they new them they want to be. I sit here year after year, and try to figure out how, as another page turns on the calendar of life to keep my daughter’s memory alive…again.

Everyone else is changing around us. Their children are growing, their families are growing, their lives are shifting. We’re stuck in our own stalemate, and in some ways we always will be. Those who’ve experienced the loss of a close loved one often tend to group their own lives into two categories: before and after they died. I want to share stories, and pictures, even anecdotes of my daughter with you when you share with me or in a group in general, but I know you’ve already heard them, seen them, know how they go. I’m sorry. They’re all I have. They’re all I’ll ever have. As time keeps ticking away I’m perpetually faced with a new year, and same dead daughter who will always be three years old to me.

A new year, Miss Elliott, but you’ll always still be the same you.

I still want to speak her name and share her life the way you share the lives of your children. I don’t want you to pity me. And I don’t want to make you uncomfortable either, but please speak her name to me. You won’t upset me, I promise. I didn’t forget that she died. I just want, most of all, to know that you remember she existed in the first place. It helps me stay in the present by reassuring me that it’s ok to keep moving forward, all while yearning for the days of auld lang syne.

So speak her name unto my ears and let the music of her spirit flood my heart and soul.