A Fixable Faux Pas

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

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

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.

Give Yourself A Medal

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

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

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

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

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

I so get that.  That’s me. Soul Pic

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

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

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

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

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

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

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

And that’s all it takes.

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

***

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

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

 

 

 

A Life, As Told In Numbers

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

An Unlikely Hero

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

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

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

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

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

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

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

Abigail and Harrison
Abigail and Harrison Ledsham

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

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

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

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

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

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

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.