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Finding Meaning in Running

8:00 PM, double check my training plan, what’s on the schedule for tomorrow? Check the weather for the morning and refer to multiple apps and graphics to determine what to wear for my pre-dawn run. Lay out my clothes, not so simple for winter running. Time for the overanalyzing to begin. Need multiple options in case the weather forecast changes between now and morning (capris versus full length leggings, lined or unlined tights, how many shirts? Fleece-lined? What thickness? Do I need a shirt underneath? If I do this shirt I can go with just a vest but that shirt I need a jacket. Which socks? Calf-length wool or regular ankle length? Decision overload!

Wake-up bright and early. Well not so bright but definitely early. Check the weather again along with the apps to make sure I’ve got the right gear. Finally decide on my layers and get dressed. Head downstairs and finish getting myself ready with yes, even more decisions to make. Hat or ear-warmer? Lined or unlined? Buff for my neck or is it not needed today? Vest or jacket? Which jacket? Mittens without question. Get those extra items on, add my Garmin, headphones, reflective vest and headlamp and am finally ready to head out the door. Winter running takes a lot more preparation than any other time of year but it is worth it.

Step out the door and take in the crisp, cold air. I can see my breath. I’m feeling chilled but I know it won’t be long before I warm up. Make a couple final decisions (where do I want to run today and what do I want to listen to; music, Peloton run, podcast, or nothing (depends on my mood and type of run I’m doing)), press start on my watch, and I’m off!

I have been struggling to find meaning since Ariella died. What does anything we do, matter? What is the point of any of it? My reason for living is gone and I haven’t found new reason. I’m not happy and even if I have joyful moments they are tarnished; bits of happiness existing with exponentially more pain. I think the most I can settle for, at least for now, is some sort of peace and calm. And that’s what running gives me. Running forces me to focus on the here and now and block out the static buzzing in my brain. My long, easy runs give me time to take in the scenery, appreciate nature, and be appreciative of what my mind and body can do. I spend much of those runs thinking about Ariella, sometimes bringing tears to my eyes and sometimes a smile. I often shut off whatever I’m listening to (if anything) and just listen to the rhythm of my breath and the sound of my feet hitting the ground, the wind rustling through the trees, a dog barking in the distance. Not quite worried about pace, these runs are great for reflection or to just let my mind go blank.

What exactly is meaning? What makes a life meaningful? Is it having a purpose? Working towards a goal? In that sense, running gives me meaning. Currently my goal is to run another marathon. More specific my goal is to run a marathon with a PR and Boston qualifying time. Even when not training for a specific race, each run has its own goal. Whether it be to achieve a certain distance or pace, or just to get outside, get some miles in, get a bit of exercise, there is some purpose to every run. If I am doing these things just for me, is that really giving my life purpose? It’s giving me purpose, something to achieve, but what about greater meaning? Greater purpose? What about what I am living for. Running is not a reason for living. I still haven’t figured out my identity since Ariella died. Running gives me something to do and something to achieve, and maybe that’s enough meaning for now.

My marathon training began in earnest this past Saturday with a 10-mile run. The group training hasn’t started yet so I was solo. I felt unencumbered and at ease. I think even with the pain and discomfort often felt with running, especially during hard workouts, running is the only time I can quiet my anxious brain and feel some sense of calm. Running is not something I have to do, it’s something I get to do. And when I’m hurting and feel like I can’t go one step further I remind myself that this is a choice. Being able to run is a gift. Ariella did not have a choice in her fight. So for her I run. What better purpose is there?

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Spent

I am drowning. I am underwater and overwhelmed. And it’s not my grief submerging me. At least not completely. I have never before felt so overloaded that I actually want to quit my job. I won’t quit. Mostly I love my job and there are too many benefits for me to leave, but I keep getting dragged under and cannot seem to crawl my way out and catch up with the demands for which I am being inundated. It has been one thing after another and I wish I could just throw in the towel. And while trying to survive with a part of me missing is not the cause of this specific stress, it certainly doesn’t help me manage it.

Exhausted does not begin to describe how I’ve been feeling. I am spent. I started this post 2 weeks ago and just left it because I haven’t had the energy for writing. And writing does take energy, a different energy than working, exercising, getting through the day. I’ve had a myriad of thoughts but not the wherewithal to put them on paper. Though I always feel better after, it’s draining to process and get it all out. When I’m finished with my responsibilities for the day I just want to lay on the couch and not have to think or act.

Since Ariella died, what used to be my most favorite time of year has become my most dreaded and painful. When I once looked forward to the crisp air, sweater and boots weather, apples and pumpkin spice, I now wish I could burrow myself under the blankets and hibernate until January. This is the third fall and holiday season without Ariella’s exuberance and delight at the apple picking and hayrides and festivals. The third first day of school with no one to take a picture of. The third time the best day of my life (and now one of the most heartbreaking) has passed without Ariella celebrating another year older. The third Thanksgiving without Ariella writing a menu, making place settings, decorating, and helping to cook (for about 5 minutes before abandoning me in the kitchen). A time of year that used to feel like new beginnings and fresh starts and family now feels just empty and meaningless.

I can’t seem to finish this post. Not sure why. I think just between working and trying to survive I can’t take on much else. It’s been another week now since I started this post and the hits at work just keep on coming. It seems like I get one step closer to getting caught up then knocked 2 or 3 steps back. I try to tell myself it doesn’t matter, it will get done, in the grand scheme it’s not a big deal, but as a person with anxiety that doesn’t work for me. So while I was counting the days until Thanksgiving break, now I am counting the days until winter break.

So Thanksgiving. Not sure what to say about that. The day as a whole mostly was fine. Turkey Trot with friends and family in the morning was a good start to the day. I thought just maybe I would be okay. This was the first year since Ariella died (the 3rd Thanksgiving) that we attempted a “normal” Thanksgiving with family. And it just wasn’t good (not the fault of any of the people in attendance). No sooner did we arrive than I wanted to leave. Sitting at a table, listening to the chatter and conversation around me, no one acknowledging the missing daughter, granddaughter, cousin. Smiles and laughter and celebration and it was just wrong. I had no appetite, no desire to interact with anyone, and finally told David I had to get out of there. Pretty much ran out without saying goodbye to most people. David and I are fortunate that we have understanding family. They would have supported us if we chose not to attend at all and they supported us when we cut the evening short. I have friends in similar positions whose families aren’t so understanding. They aren’t allowed to grieve in the way the need to, to take care of their needs. They are made to feel selfish. Honestly, those grieving especially an untimely loss need to be selfish sometimes. The pain is so excruciating that the only way to protect ourselves and get through is to be selfish, avoid the events, stay home, whatever we need. On a day of thankfulness it’s awfully hard to be grateful when your child is dead. But I am thankful that I don’t have to pretend like I’m okay and fake being normal and put myself in situations that are not good for me.

David and I are going to another bereaved parents retreat. When we were invited immediately we jumped at the chance and booked our plane tickets. But there have been periods of time where I’ve had mixed feelings. These retreats are a rollercoaster of emotions and at times I’ve been wondering if I have it in me right now to let those feelings out and absorb the grief of others. In the past couple of weeks I’ve realized how much I need this retreat right now. It again won’t be easy but just the promise of reuniting with friends is what has been getting me through lately. We have also been planning a couple other trips and just having something to look forward to and keep us busy planning makes a difference. Getting away from home helps a lot. Sometimes I think it would just be easier to move away, start somewhere else, in a place that feels “normal” without Ariella. There is no right thing to do. What feels good in one moment may feel terrible in the next. Ultimately it is still just getting through the days minute by minute.

I have been taking up running a lot more lately. I was considering starting a running blog but after some thought I don’t think I need a separate place for that. This blog is about living after the death of a child and running has become a large part of my life again to help me get through the days. Getting back into running as much as I have is as much for my mental health as it is for my physical health. Actually more for my mental health. So I’ll be sharing my running journey here as well. I ran a bit in high school and college but really got into it in my late 20s/early 30s. After an injury sidelined me I was frustrated when I couldn’t get back to where I was. While I never stopped running I did decrease quite a bit because I was worried about getting injured again. I continued running recreationally but had sworn off further racing. In February 2020 I was convinced to sign up for a 10 miler that June, pretty much for the shirt. Well we all know what happened there but I did do the run virtually. When in-person racing resumed earlier this year I felt the need to be a part of it and even though the race itself was pretty miserable (the hills were so ridiculous as to be defeating) it actually felt good to be a part of something bigger, a part of a community, even though that is usually the opposite of my whole being. So here I am. Back to signing up for races, running marathons, joining a racing team and a training group. Joining a team or group by the way, is way out of my comfort zone. But while one reason I love running is because it is a solitary sport, I have recently discovered the value of also running with others. I have set some goals, with the ultimate goal to qualify for the Boston Marathon (I wasn’t too far off with the Baltimore marathon considering the pain I was in and the difficulty of the course). So that journey will also be documented here, because having a goal, having something to work towards (who am I kidding, something to obsess about) is giving me some of that purpose I have been looking for.

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What do you do when parenting ends?

When a child dies, parents grieve not only the child, but all the missed milestones, big ones as well as those that seemed so unimportant when the child was alive. We don’t just miss our child, her presence, her hugs and her voice. But we miss the future she will never have and the future we will never share. We miss watching her achieve her dreams, become independent, have a family of her own. All the things that make a parent proud, big and little, we grieve. Ariella wanted to achieve so many things. She had so many friends and ideas and activities. We never got to see her become a Bat Mitzvah, learn to drive, have her first date. All the things we were excited for for her. We have watched her friends do some of these things and have seen younger friends surpass her in age and it shatters me every time that we will never get to witness Ariella’s excitement, independence, and growth as she moves forward through the stages of life.

When your only child dies you grieve all of those not just in the context of your child, but in life in general. Not only will we never get to be the proud parents of Ariella as she becomes a Bat Mitzvah, as she tap dances at a dance competition, or watch her walk across the stage in a cap and gown. Not only will we not have the opportunity to panic while teaching her to drive, bemoan an empty nest as we drop her off at college, cry happy tears as we walk her down the aisle, or experience the joy of being grandparents as we babysit her children. We will not get to have these moments ever, at all. We didn’t just lose our daughter. We lost parenthood.

David and I have been trying in several different ways to become parents again for over two years now, and that journey, trek, road, voyage, roller coaster, whatever you want to call it, has officially come to an end. So that’s it. Our parenting experience is over. After just 11 years. Once a parent you are supposed to always be a parent. Watch your child grow to adulthood, not bury your child. I miss Ariella more than words can possibly explain and I miss being a parent just as much. And they are two very separate things. It’s hard enough being forced to live in a world without my daughter in it, but add to that that I am now an outside observer of a life I want so much to be a part of and it is just brutal. No more proud Mama moments. No more perfect fall family outings. No more silly game nights and no more carry-out and movie nights. And I’ll never get to experience what it’s like when your child is an adult, and can be your friend more than your child. Parenting was my life and I’ve had to accept that that part of my life is over. There is no silver lining that accompanies the death of a child. There is no “at least.” But being able to continue to have the parenting experience would have given my life the meaning it is so sorely missing. And the grieving process has started over again with this path definitively coming to an end. I am sad. And lost. And don’t know where to go from here.

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Grief is a Stealthy Bitch

The definition of grief, according to Mirriam-Webster: deep sadness caused especially by someone’s death. Seems quite simple. Grief, however, is anything but. Especially when it is the complicated grief of an out-of-order death, such as the death of a child. Sadness does not begin to describe the feeling of this grief. And grief changes as time goes on. It doesn’t go away. It is ever present, but not always as oppressive as it once once. It was almost easier in the earlier days. You expect to be in pain all the time. You expect to want to wallow, you expect to cry multiple times a day. You expect to be sad and broken and shattered. Grief isn’t surprising. It’s a part of you now. And though the pain is unfathomable, you know what to expect. You aren’t blindsided on a daily basis. It just, is.

As time has gone on, though the pain is still very real, I have moments where I am no longer completely consumed by grief. And this is hard. Because I don’t know when those tidal waves will appear full force, knocking me down, washing over me, threatening to drown me. several years ago in 2015 Ariella and among with some great friends discovered an acai bowl place in New Jersey, when we were there for a dance competition. We went at least three times and though there are similar places by us, none that compared to the place in NJ. Well they just opened one up in my area and I decided to head there opening day. There was a line out the door as expected but it was a cheerful mood, a sunny day, and a DJ playing some tunes. While I waited there were 3 songs played in a row that I always connect to Ariella; “High Hopes” because she loved that song and always sang it at the top of her lungs, “Shake it Off” which she danced to during the very weekend in NJ where we discovered these bowls, and “Better when I’m Dancing” which was her tap solo when she could finally dance again., and the last dance she ever performed on stage. This song was also playing as she took her last breaths. I’ve heard all of these songs many times since Ariella died but for some reason this day, the tears instantly hit and I could not stop them. There was chatter and laughter all around and here I am with tears streaming down my face. Grief is a stealthy bitch.

Grief is unpredictable. It’s hard to make plans. I worry I will regret it later. I’ve learned that I need to make sure I have my time to myself. We’ve had so much going on lately it’s been exhausting. But by continuing to run and cycle I’ve kept that outlet I very much need. And if I’ve learned nothing else in living with grief, it’s essential to do the “self care.” I do not like the term self-care. We all know self-care is important but I think it is such a buzz word now that it has lost meaning. I know in my job for example, we have professional development sessions on self-care when that time could be much better spent getting actual work done. When it becomes a chore, it’s no longer self-care. But anyway, we do need to take care of ourselves and that is especially true for person grieving and in pain. All that to say, sometimes I just can’t make the plans. I just can’t go see people. Whether it’s because I’m just exhausted by interaction (as an introvert by nature this was the case even prior to Ariella dying) or because it’s just something I cannot face (I have not been able to attend any of the Bar Mitzvot we have been invited to), I am not able to put myself in situations that I can’t easily escape. When I’m seemingly “fine” grief comes along and kicks my feet out from under me and I’m often trapped in my current situation. I never know when that may happen. It was easier when grief was just there, smothering me but leaving me with no question as to what to expect. And the stages of grief are crap. In fact, they were not described for people who have lost loved ones. They were defined for people who were the ones actually dying. So to expect to follow specific stages just makes it all the more confusing and overwhelming for those grieving and their loved ones.

We ended up having to put our dog, Sherman down. And while Sherman is not a person, taking care of him was very reminiscent of taking care of Ariella. David and I taking turns sleeping on the couch so we could be near him, help him outside, help him settle down, just like we took turns staying with Ariella in the hospital. Waiting for test results, trying to make sure he wasn’t in pain, talking to the vet about quality of life. Making the gut-wrenching decision and holding him as he took his last breaths. We had been there before. With our child. And while I never forget any of it, it brought it all back to the forefront. We should not have to grieve another loved one so soon. Especially the pet we got in our grief, to give us some purpose, to give us someone else to love. Losing a pet is NOT the same as losing a child (it really burns me up when people say that) but it is still a heartbreaking loss and just felt so horribly unfair after everything we have been through and are still going through.

You’d think that those who have been through the worst, would get a free pass for the rest of life. But we all know the universe doesn’t work that way. So life is now spent expecting the worst, waiting for the other shoe to drop, wondering what will go wrong next. It’s a pretty sad existence, but well even though people further along in their grief say there will be joy again, I have not yet found it. I have found enjoyment in moments but not happiness in everyday life.

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The Evolution of a Marathon

The morning of, hours before the start. Gotta get up! Gotta get moving! The race is in 3 hours! Gotta get dressed, gotta eat, gotta get there super early to secure parking, use the porta potty at least 3 times, figure out logistics, stand around and wait.

Ok, we’re here, just 2 hours until the start. Let’s wander. Let’s wish people luck for the 5K. Ok, now back to the starting line. Just 20 minutes to go. Where do I line up? Where I expect to be or where I hope to be? I know, somewhere in between. Oh, they’re moving forward, good luck kisses goodbye, let’s do this! Just 10 more minutes to start! Let’s stand around more and wait. Finally, the National Anthem and the wheelchair racers (amazing athletes by the way) and now it’s our turn! There’s the gun! Let’s.. walk slowly in a large pack to the starting line. Okay, hit the starting line, let’s go!!! I’ve got this!

Wow, the beginning is straight uphill. But feeling good and strong. I’ve got this. No music, just listening to the sounds around me. Hey, “Fight Song” is playing on on someone else’s music. Ariella is here! Heading toward the zoo. Maybe we’ll see some animals! Ooh, lots of downhill. This is wonderful. Didn’t see any penguins, bummer. But loved the guy in the lounge chair just chilling who gave me a thumbs-up! Hey camera man, feeling good, don’t make me look weird! Leaving the zoo, still lots of downhill.

Some boring stretches of the run but soon heading towards miles 8 and 9. A spot where David may catch me. Great crowd with lots of excitement, but no David. Oh well, I know I’ll see him at the halfway point. Nearing mile 10. Shit my foot is cramping. Prone to cramps but not usually while I’m running. My ear just popped, what the fuck?! Everything sounds like I’m under water. I hope this isn’t a sign of things to come. Not even halfway done. What a boring stretch of run but I see runners coming back this way so there must be a turn around soon. Where the fuck is that turn around? Is that it? Nope, that’s the turn around for the 5K. Still going. This road is boring and long. Oh hey, there’s the Under Armour Headquarters! That’s where I got my Covid vaccine. Ah finally, we get to turn around and I get to head back to the large crowd of supporters. Oh hey! Some cheers from friends through RaceJoy! And text messages! So cool to be able to get that support while running.

Coming down the stretch and my bright pink arm sleeves paid off because David spotted me from pretty far away and I saw him wave to me. The cheering is incredible. Feeling strong and fast! Grabbed some water and continued on. The next few miles unremarkable. Feeling some twinging in my calves, especially my right one but doing okay. Still on pace to finish under 4:00. And now my other ear popped. This has never happened when running before. My breathing sounds even worse, like Darth Vader breathing directly in my ear. Not distracting at all. Hear my name being called! It’s my ex-sister-in-law! So glad to see another friendly face. Especially during such a quiet stretch. Slowing down a bit but here comes Patterson Park and mile 16! The crowd support is incredible! Can’t slow down here!

Who the fuck knew Baltimore was so damn hilly? I’ve done this before, I must have blocked it out. Where the hell is Lake Montebello already?! I need to see that mile 20 sign. Have to keep stretching my calf. Not only is it sore but I can feel it spasming or twitching or moving like some sort of weird alien invading my body. Ah here we go, heading into Lake Montebello. But what the fuck is that hill I see after we exit the lake? I thought the last 5 miles were mostly down hill? Ok well let me make my way around the lake. What the fuck RaceJoy app! I am not at mile 21! I just passed mile 20.

Okay, made it up those hills after the lake. That’s all the uphills, right? Right? Shit, nope. Still on pace to finish at around 4:00 but I am hurting. Feet keep cramping and forcing me to change my gait. Now my quad is hurting. But I am going to make it. Maybe. Just going to walk up this hill to the traffic light. Okay, just across the intersection. Okay, after I drink some water. Shit, I’m out of water. Okay I’ll run to the next water station. Oh hey, someone handing out water. Just what I needed. Thanks to the person who said go Ariella Strong. You helped me through another block. Hearing her name was a fantastic gift. Thanks to the person who yelled go pink sleeves! Oh hey, these people are talking about a dog named Sherman! What are the odds? Evidence of both Ariella and Sherman. Hey guy in Winnie the Pooh outfit. I appreciate the distraction because I am really starting to worry here. My calves hurt, I can’t hear, and my water keeps leaking. I AM GOING TO FINISH. These kids on my back endured a hell of a lot more and they had no choice. Also I am way more than 2/3 done this King Crab Challenge and that medal is badass. I did not come this far to not get that damn medal! Ok, let’s do some walk run intervals. Still on pace to crush my PR. No sub 4:00, but hopefully sub 4:30. Ah Eye of the Tiger guy. A fixture at every Baltimore Running Festival.

Mile 25 and Gatorade. Thank you thank you thank you. A great excuse to stop running. Holy fuck my calf just complete seized up and I can’t move it. Let’s try stretching it. Thanks volunteer at the water stop but I do not want the medical tent right next door. I have 1.2 to go and I WILL make it across one way or another. I am running for those who can’t so I have to finish. These names are keeping me going. Plus people are tracking me so gotta keep going. Okay, let’s walk while I drink my Gatorade. Quick text to David to let him know where I am and that I’m hurting. Phone away and I am running to the end. Or not. Fuck you again RaceJoy! I did not finish! I am not even at mile 26 yet! Somewhere between mile 25 and 26. Quick stretch of my calf. Shit shit shit. My entire leg is one big charley horse. Fuck! Okay, easing up. Now to stretch the other. Fuck! Another one. Ah hell. Not now. Please let me just finish this thing. Thank you nice strangers who stopped with me to see if I needed help. Thank you for walking with me and then running with me. It’s the camaraderie that makes these races so special. Woo hoo! Mile 26. There is no stopping me now! Yes sir with the sign, I will make this last .2 my bitch. No one will see my pain. Hey, I hear my name again, where is it coming from? Ah over there! It’s David! And my mom! Just a few steps to the finish! And I’m done! And I’m in pain. And I’m sobbing. So glad that’s over. No thanks, I don’t need a wheelchair, probably should try to walk and keep moving. Okay, let me refuel and meet up with David and my mom. Maybe I should have taken that wheelchair. Nah, I’ll be alright. What the hell was my finish time anyway? Didn’t even notice the clock. Shit, now I have to wait until results are posted. Ah here they are, 4:20:20. Okay, not what I was hoping for but crushed my PR by 35 minutes and under 4:30. Going to enjoy this delicious beer and then relax and not think about running for a while.

Advil and the Theragun seemed to help with the calf pain and our sushi dinner hit the spot. So glad to have an excuse not to workout the next few days. Hmmm, I wonder what the best marathons are?

The next day, calves and quads are sore but not debilitating, though steps are not my friend. I wonder what kind of time I would need to qualify for Boston? Hey, I would only have to cut 30 minutes off my time. I could do that on a flat course, right? And if I can get these muscle cramps under control. Let’s look up some marathons…

But seriously, this doesn’t even capture all the emotion and and euphoria and pain I experienced throughout. When I started getting foot cramps at mile 10 I started getting a little worried. And my calf pain showed up in full force at mile 16. The names on my back, the kids still fighting, and all my supporters are what kept me going. I am so proud of my accomplishment but I am also disappointed because I had such a difficult time. It may have been my fastest time but I felt much better the last marathon I did (New York in 2006) and I was hoping for that experience again. So the journey continues…

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Fuck You, Universe. Fuck. You.

Today is a shit day. It shouldn’t be. It should be a celebration of Ariella turning 14. It used to be the happiest day. Because it is the day I became a mom for the first, and only, time. It’s hard to believe that I could be the parent of a 14 year old, of a high schooler. I see everyone else with their perfect children and perfect families celebrating the new school year, being another year older, celebrating all the milestones. And I am left with remembering Ariella at her last birthday, her 11th birthday. And it’s shit. There is a world of difference between 11 and 14 so I honestly cannot begin to imagine what she would want to do to celebrate, what she would want as a gift, what she would wear. I knew her so well and now I don’t know what she would be like at 14. The only thing I do know is that if they were both here, we would have some kind of celebration together with my father. His birthday is tomorrow and he loved his birthday and he loved (almost) sharing it with Ariella. So tomorrow is a shit day too.

On top of all of this Sherman, my dog, the reason I got up in the morning in the months after Ariella died, the reason I set foot outside, the one who came to our home with a big giant bear and tons of unconditional love to give, is not doing well at all. There is a very strong possibility that we will lose Sherman and it is devastating. When we get pets we expect to outlive them. But we don’t expect to lose them at just 4 years old after only having them for just over 2 years (unless you are a saint and purposely adopt older or sick pets).

I am tired of being shit on by the universe. You’d think after suffering the worst loss a parent can experience you would get a free ride the rest of your life. But of course the universe doesn’t work that way. So here we are. Dad died in February 2016 (we of course expect our parents to die before us but he died younger than he should have), Ariella diagnosed with cancer January/February 2017, relapsed 2018, died 2019. Unable to become parents again despite exploring many avenues for parenthood for two years now. And now facing the loss of our dog who helped us through so much of the initial pain. What. The. Fuck?!

I am really at a loss as to how to even deal with all of this right now. Today (as many days) I threw on my running shoes and did some running. Back on the subject of shoes, my running shoes have carried me many, many miles and are better than any therapist. I just wish they could whisk me away from this life and into a better one. One without all of this pain and heartache. One without this black cloud hanging over me.

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Shoes

1,800 pairs of shoes were displayed at the Washington Monument as part of CureFest, representing the 1,800 children that die from cancer each year. Those shoes held 3,600 feet that once walked or ran or crawled or were carried (babies get cancer too) on this Earth for far too short. They are no longer here but the shoes remain to tell part of their story. Did they walk or did they run? Were they still in the crawling stage or were they an infant, needing to be carried? Did they play in the mud and jump in puddles on a rainy day? Did they doodle on them when they were bored in school? Did they prefer comfort to fashion, or fancy to casual? Were they active or laid back? Or did the shoes just reflect their favorite color or character? Whatever the shoes said about their owner, their personality was reflected in some way. These shoes traveled to hospitals and clinic appointments. Went to schools and back. Provided some sense of freedom when their owner would run in them. These shoes climbed jungle gyms, hiked trails, pedaled bicycles, rode scooters, jumped on trampolines, kicked soccer balls, danced, skipped and galloped. Maybe traveled the world or maybe stayed close to home. Whether they traveled hundreds of miles or just a few, or none at all, these shoes held the feet of 1,800 brave souls who were taken way too soon. These shoes are now still. They sit, unworn, empty. Nothing but a reminder of the lost lives they once adorned.

When I went through Ariella’s things not long after she died, there were some things I just could not part with. Among those items were were two pairs of shoes that were Ariella. Ariella was all about comfort. Sweatpants and oversized hoodies and t-shirts. Perfect with her Uggs. They were cozy and easy to put on and went with everything. Ariella was not a dress and skirt kind of girl. She agreed to wear a dress to a Bat Mitzvah if she could get black Chuck Taylors to wear with it. And she did. And that was Ariella in a nutshell. Often a contradiction but she didn’t take herself too seriously and didn’t care what others thought.

How fitting that the Uggs are in the picture also. The Uggs experienced many adventures with Ariella. The Chuck Taylors not so much but both of those pairs of shoes represent distinctive parts of Ariella’s personality, and I don’t think I will ever part with them. Death changes your perspective of everything. Something seemingly so meaningless as a pair of shoes represents so much more than we would ever consider. As noted above they represent lives lost from cancer. Beautiful souls that were extinguished. They represent the lives that were and the lives that will no longer be. These kids did not grow out of those shoes. They never had the chance.

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CureFest and More

It has been a very rough end of August and September. I’ll go into the whys in a bit. I want to write about CureFest while I’m still processing and it’s still fresh in my mind. For those that don’t know, CureFest is a powerful weekend of advocacy for childhood cancer awareness. There are speakers, performances, rallies, and families. Families still with hope, and families that have been destroyed. If you are new to the blog you can read about our previous CureFest experiences here; https://lifeafterchildloss.net/curefest/

CureFest is both terrible and beautiful. It’s harrowing and poignant. Filled with hope and despair. But no matter who you are and why you are there, it’s a weekend filled with extreme emotion. Friends reuniting, bonds being forged, a family reunion. Because they are our family. My favorite CureFest memory was in 2018, our first time attending. Ariella was looking forward to seeing her friends Ava and Emma that she met a month earlier. When they saw each other it was pure joy. Arms spread wide, huge smiles on their faces, they ran to each other full speed and embraced in a tight group hug. Ariella had an incredible support group here, but Ava could be described as her soulmate. They both “got” each other immediately and formed an instant connection. They could just be themselves, no explanation needed. This was what CureFest was all about for us. That connection, the support, the smiles, and the hugs. Even though Ariella was in treatment for her relapse, we felt the hope and it was contagious. We felt for the bereaved families and were grateful it wasn’t us. We knew it could be yet we were so sure Ariella would be fine. It was an emotional but mostly joyous weekend.

This year one of the first families we saw were Ava, Emma, and their parents. The girls ran over to us to give us hugs and we hugged our friends and all I could see was Ariella running to the girls with pure love and joy. And my heart shattered even more. Because I knew the girls were feeling the same way. Missing Ariella. We actually weren’t even planning on attending this year. It wasn’t on our radar, we had so many other things going on, and it’s a hard, terribly hard weekend. But we were asked to come, to have a table and give out bears for the children to adopt. So we talked about it. And decided attending was the right thing to do, but for our own health to attend just that evening. It is very different being there as a bereaved parent and life has been so hard I couldn’t let it take a further toll on me. But I’m glad we went. To see the happiness on the kids faces when they got to make their very own Ari’s Bear to bring home. And not just the young kids, but older kids and teens as well. To meet the families who are still fighting for their kids and advocating for research. To meet the other bereaved families, some we knew from following their stories and some meeting for the first time. To keep Ariella’s legacy going. And we even had a sign from Ariella, if you believe in that sort of thing.

All in all I’m glad we went and I’m glad we left when we did. I know the rest was beautiful and sad and moving. There was a vigil and a shoe display (1800 pairs of shoes to represent the number of kids that die from cancer each year) but I’ve lived it. All of us there, lived it, are living it, will be living it forever even if their children survive. I don’t need to physically see it to understand the enormity of childhood cancer’s devastating effects on families. The people that really need to see it, to grasp, are the ones that aren’t there. CureFest is wonderful for bonding and crying and sharing and supporting, but it’s preaching to the choir. We still have so far to go to make that awareness far reaching so that the world takes notice. So while touching and heartfelt and necessary, it’s also quite frustrating.

Fall is always a difficult time of year, and this year is no exception. In fact, it’s much worse. I have never hated the start of a school year so much. In part yes because Ariella had her last first day at 6th grade. This year she should be in 9th grade. A high schooler. No more first days of school for us. But I work in the schools and my start to the school year has been simply awful. And I know I’m not the only one who works in schools feeling this way. For the first 2 weeks I literally almost cried no less than 3 times. And I do mean I was at the point where I was fighting back tears. A long story that I don’t think is necessary to go into, just to say that related service providers tend to get the short end of the stick, not treated as regular members of the school staff, not treated with the same respect. Life is already so hard and I am just over it. And I can’t even blame it on the pandemic. Not really. Some of it is indirectly due to the pandemic but mostly it’s crap administration and ridiculous policies and protocols and lack of communication. It is all just very overwhelming and I usually want nothing more than to curl up with a blanket over my head and block all of it out.

On top of all of this, our dog isn’t doing well. He’s young, only 4. Overnight he had a complete personality/behavior change. Vet so far found nothing wrong but had given antibiotics and steroids. Stopped the steroids but they may still be lingering in his system so we aren’t sure yet what is now side effects of meds and what is original condition. But I’m inclined to believe whatever his condition is has gotten worse. And I don’t think I can handle this. But of course I can. I’m living through much worse. But still. You get pets knowing they aren’t going to be with you forever but you also expect to have a pet longer than a couple of years without health issues. Sherman is the dog we brought home because I needed company after Ariella died, when David was at work. Sherman is the dog that forced me out of the house and into fresh air because he would need to be walked. Sherman is the dog that came with a big giant bear. If that’s not a sign he should be with us, I don’t know what is. Sherman is the sweetest, least needy dog and it’s breaking my heart that he can’t tell us what’s wrong. That he doesn’t feel well but he doesn’t understand why. That he can barely walk right now, that he can’t jump up on the couch or bed with us, that he is agitated and restless and scared and can’t calm down. When we brought Sherman home the quiet in our house wasn’t so deafening, the house didn’t feel quite as empty. I had someone to pay attention to. Maybe I’m jumping the gun, maybe, hopefully, whatever his issue is, is fixable. But I’m no longer an optimistic, hopeful person and I can’t help but to jump to worst case scenarios. I’m in this position again of being scared and worried for someone I love and though it’s not the same, it still hurts. Especially with a helpless animal who loves unconditionally.

As always, writing and exercise are my outlets (even though I don’t post as much I write all the time) and I did a thing. I have been a runner off and on since high school, but started more in earnest in my late 20s/early 30s. I used to run in a lot of races but then stopped for a while just because I didn’t want to do them anymore. After Ariella died I needed movement. I felt itchy and restless, and it was all I could do to keep from pulling my hair out and scratching at my skin, screaming at the top of my lungs at all hours of the day. I started walking Sherman. And then went back to the gym. And then began running again. In 2020 I signed up for a 10 miler which went virtual because Covid. I wasn’t going to run virtually but I was brought back to spring after Ariella was diagnosed. We had signed up for a cure Sarcoma fun run. Ariella was so sad that she couldn’t run, that she had to walk. She felt left out and was looking forward to the day she could run again. So in June 2020 I ran my 10-miler for Ariella and everyone else that couldn’t. Began training again and though I said I was probably done racing, when racing came back in person earlier this year, I couldn’t pass that up. And running has helped me in other ways. I am currently volunteering for the Ulman Foundation for their Cancer to 5K program. I’m getting to do what I love amongst a very supportive group of people. And it’s pushing me to get out more, meet new people, something I was always anxious about and even more so in my grief. Running was always a solitary sport for me. I like my alone time, I need it, and running was perfect for that. I almost never ran with others. But since volunteering my eyes have been opened to how great running with others can be as well. I have a friend training for the NY Marathon and I ran 20 miles with her on Sunday. Which brings me to the thing I did that I mentioned at the beginning of this paragraph. The 20 miles flew by when running with a friend (the first 12 were with a few others as well). Sometimes we talked, sometimes we were quiet, but we were always there to offer support. And the 20 miles never felt out of reach. So I decided to upgrade my Baltimore half-marathon registration to the full marathon. This will be my fifth marathon, my first since 2005. But it is the one I feel most prepared for. I don’t have plans to run with anyone in particular but my goal is to ditch the headphones and make friends along the way. And I am trying to let go of any time expectations other than to finish faster than my last (and fastest) marathon. The race is October 9.

I know this post was kind of all of the place but that’s my life and my thoughts these days. I will be sure to update on Sherman once we know more. As always, thanks for reading and please share with others you think this may help. I write for me but I post to hopefully help others realize they are not alone in their grief.

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Southwest Hope and Healing Bereavement Retreat (Part 2)

Seems as if I start most posts the same way lately, that I haven’t blogged in a while. I write almost daily, even if just a line or two, but nothing that feels worthy of sharing. There just doesn’t seem to be much point. I don’t do very much, especially now that it’s summer (which is sadly nearing the end) and my emotions and motivations or lack thereof haven’t changed very much. I am by no means the only one going through a difficult time and with the grief, loss, fatigue, and malaise surrounding covid, I haven’t felt right putting all my thoughts out there. I do know anyone reading this wants to hear them, wants to know how I am really doing, but much hasn’t changed for me. Just plodding along, trying to survive day by day.

For those that have been following my story since the beginning or close to it, will have read about our experience with a bereavement retreat that we attended in Arizona just 3 months after Ariella died. If you haven’t read that post you can find it here: https://lifeafterchildloss.net/the-retreat/ The retreat was for parents whose children have died from cancer and it was a heavy, poignant, in some ways beautiful, and therapeutic weekend. So when given the opportunity to attend again, we booked our flights without hesitation.

This year, in anticipation of the emotions and heartbreak, and the weight of shared grief that we knew was ahead, David and I decided to travel to Arizona a day early and just take some time for us. This time we knew what to expect and we knew how incredibly hard it was going to be, and we wanted to ease into it. So we once again travelled across time zones, into a desert landscape with a hot climate (but it’s a dry heat!) and took in the beauty of our surroundings while preparing for the work ahead (and facing grief head on, sharing stories, meeting other bereaved families is indeed work). We spent our first day and night at a beautiful resort, having some drinks at the pool, getting in some exercise, and doing some hiking. The the desert can seem quite unforgiving but the scenery is picturesque and the beautiful surroundings add a sense of calm and peace.

Our grief clings to us like an unwelcome visitor and yet being away from home provides some relief from the ever present suffocating feeling. It felt easier to breathe, easier to move, easier just to “be”. At least in the day prior to the retreat. Whenever I’m away from home I look for signs that Ariella is there with me and this trip was no exception. I choose to believe she was there in the butterflies that kissed my arm and flew all around us on our hike. There were so many things Ariella would have loved about that hike we took (and a few she would have hated) and I wish she was there with us. Of course if she could have been there we wouldn’t have been there at all. We crashed early that first night due to the time difference and of course were up ridiculously early the next morning, which gave me plenty of time to get in a run. Some things don’t change and I continue to need to exercise to manage my anxiety. I do love running in a new place and this was no exception, though I planned poorly and went downhill for the first half of the run, meaning the second half was straight uphill. But I beat the worst of the heat and it was a good start to what I knew would be a challenging day.

Onto the retreat. Though we had done this before and knew what to expect, there was still some anxiety about what was ahead. But I needn’t had worried. Going into the dinner, decorating our candle for the candle lighting ceremony, and talking with other bereaved families, was like returning home. Some families we knew from the previous retreat, some we knew from a virtual retreat we attended, some we knew from following each others’ stories on Facebook, and some were complete strangers. But in the bereaved parents of childhood cancer world there are no strangers. We all have this one tragic thing in common and that makes us family. There is no better support than another parent who knows just what you are feeling. That dining room at that ranch in the heat of the Arizona desert was where we belonged. I haven’t felt such a sense of belonging since the retreat in 2019 and I didn’t realize I needed it until I was experiencing it.

This was a very difficult weekend. We shared our stories. We shared them without fear of judgment, without getting cliches and platitudes in return, and without toxic positivity. We didn’t censor ourselves and we didn’t worry about making others uncomfortable. We were just heard. We were seen. We listened, without distraction, even though our stories were often similar and brought us back to our own nightmares. We talked about our children and our loss and our grief in a safe space and that is a rare thing for bereaved parents to be able to do. Grief is ugly and messy. It’s disorganized and scary and oppressive and stifling, but being able to share that grief with someone else is beautiful. And I have found that sharing others’ grief helps to lighten mine in the moment.

When we first showed up at the retreat I was asked how it was different now, 2 years later, than it was when we were still so fresh in our grief. I replied that I wasn’t sure but that it didn’t feel quite as raw and that I could now talk about Ariella without crying. Except that as soon as I started to share, I started crying. And I realized that this is still new. Two years later and I feel like I am still learning to navigate this world without my beautiful daughter. Though it’s easier for me to get out of bed every day, the loss feels much heavier than it did initially. Because the numbness is gone and reality hit that this is truly forever. As the months tick by I am reminded of all the experiences Ariella missed out on and will continue to miss out on, and all that we will miss as her parents. Ariella should be starting high school next week and developing crushes and becoming more independent with her friends. Instead friends that were younger have now surpassed her and they are experiencing the milestones she never did. This really does not get easier. I guess the difference between now and then is that I know that I will survive, even if I don’t want to.

Connections were made once again and we are lucky to have yet another opportunity in the next few months to meet with these families again, this time in Florida. Many felt there wasn’t enough time in this retreat. I think there were enough days, but we spent so much time sharing our stories (which is a necessary thing) that there wasn’t time for a facilitated session. I expressed a need for more workshop type sessions such as for self-care, and more time just to be with the other families. Others expressed similar. And our gracious host generously has arranged one more retreat for the same families and already I’m looking forward to seeing everyone again. Because those are our people.

  • Blue Orb… Ariella?
  • David taking a selfie of the 2 of us…
  • Rainbow in the Pic.. a sign?

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Grief Lives in Me

Someone recently shared a picture with me of her with Ariella from 4 years ago, so a few months after Ariella was diagnosed. In it Ariella is wearing a shirt that says “Kind Heart, Fierce Mind, Brave Soul”. These words describe Ariella quite well. I don’t think at this point we realized just how fierce and brave she would ultimately be but we already knew that she was not going to let cancer stop her. In this picture Ariella has a huge smile and if you didn’t know any better you would think she didn’t have a care in the world. And at that moment, in that picture, she probably didn’t. When she was in the hospital, when she was feeling bad, cancer was all she could think about. But in between treatments, when she was feeling good, she lived like any other 9, 10, 11 year-old-girl. She was having fun and in that moment, that was all that mattered.

Grief is different. I can put on a smile, take a picture, and also look like I don’t have a care in the world. But my grief lives in me. It’s not just moments in time, it is all the time, even when I may be enjoying myself, living my life, not wallowing. This grief, it’s a part of me, always. My good moments, my bad moments, all viewed through the lens of my loss. I still feel this grief in my body. It starts in my chest, my heart. When grief waves crash over me my heart races and the waves ripple outward. The waves spread upward, a lump in my throat, silencing me. But then upward still, to my head, where the tears and throbbing start. I lose focus, forget what I’m doing, become confused. At the same time the waves move down, into my legs. I can’t sit still. The only way to quiet my legs and quiet my grief is to move. I exercise. A lot. Over two years later and the grief still manifests in physical and cognitive symptoms.

Grief has made me a liar. Everyday when I exchange the perfunctory greeting with others, hey, hi, how are you, how’s it going, etc. etc. I lie and say good, okay, fine. No one would know this constant pain I’m experiencing. Outward appearances mean nothing. I am so tired of being in pain, of feeling this heartache both emotionally and physically. But at the same time, I don’t want it to go away. Because I should be hurting. My daughter is dead. How an I feel anything but hurt?