Tag: child loss

Posted on

Vacation

I’ve been wanting to write about my vacation since we got home but just hadn’t gotten to it. Not sure why. I had plenty of time considering my winter break was extended but for some reason when I have nothing to do it’s even harder to be productive. As much as I did not want the extended break because those days will be added to the end of the school year, it was nice to be home with nothing to do. But now, with this snow day I am officially bored and figured it was finally time to write about our trip.

As always, it feels good to get away. It doesn’t lessen the pain of missing Ariella but going to a place that is not fraught with memories helps to soften the edges of grief. We started our vacation in Delray Beach, FL where we got to spend time with my aunt and David’s grandmother. We don’t see them enough and it was good to be with family. We didn’t have to put on any kind of act or brave face, we just had to enjoy each others’ company. I made sure to get my run in, we paid a visit to the beach, and had some tasty meals (Chinese food on Christmas Eve; can’t go wrong there). But mostly we were just together.

On Christmas day we headed to Ft. Lauderdale to spend the evening with a friend and her girlfriend. I have mentioned before about how grief changes relationships in many ways. Some relationships don’t survive but others grow and you find people there for you that you wouldn’t necessarily expect. This friend we visited wasn’t a close friend. We all went to school together but our relationship didn’t really go beyond that. But she has reached out sincerely many times since Ariella died and we have learned that she will always be someone we can rely on for support. We had a nice evening on her roof just shooting the shit and enjoying sushi and again just hanging out with no expectations. The thing about making or growing friendships after a traumatic event is that they don’t know who you were before so they can’t see how you’ve changed. No pressure to be the carefree people we were before.

After our visit with our friends it was time to head down to the keys. We spent a night in Key Largo where I got David on a paddleboard and we had a brief visit from a manatee. The place we stayed was a neat little resort with our own little bungalow right on the beach. We had dinner on the water, I of course got my run in the next morning, and our entire stay was peaceful.

Finally it was time to head to our final destination, Key West. The drive was easy and while we had a great trip until then, it was nice to know we were going to stay put for a few days. There was a stark difference between Key Largo and Key West, with Key West bustling with much more activity, especially in the downtown area. We did all the touristy things; the southernmost point of course (David made me wait in line for a picture, I would have been happy taking a picture at the southernmost bar) and next to that was a menorah so we decided to take a picture as the southernmost Jews as well, the butterfly conservatory where I had a friend land on my head, sign from Ariella? It did land where a unicorn horn would be…, Hemingway’s house with the many 6-toed cats, Truman’s Little White House, and of course meandering along Duval St.

We were certainly not idle in Key West. I continued to get in my runs which were so nice to do along the water with flat terrain. It was hot, even early in the morning, but it was great to not have to think about what to wear or layer up and I could just enjoy the lovely surroundings. We went kayaking through the mangroves one day where we saw manatees, nurse sharks, and lots of jellyfish, and spent hours biking around the island another. We saw a beautiful sunset with three birds (another sign from Ariella) and took a ghost tour where we learned about the darker side of the island’s history.

Though we kept busy we also were able to relax by the pool and just enjoy the calm. That’s not to say there was no sadness this trip. Though this was not a place we had been before it was easy to imagine Ariella there with us. We would have spent hours in Hemingway’s House to see all the cats. She would have stopped to pet every dog that passed by. She would have been on the paddleboard and kayak and ridden her bike alongside us (who am I kidding, she would have left me in the dust on the bike-that kid was fearless). She would have been in awe at the butterfly conservatory and the ghost tour would have been her idea. Watching other families have amazing vacations feels like a sucker punch right in the gut. This vacation was proof that joy can exist with sadness and pain but those moments of happiness are fleeting and the pain often overrides.

Our trip home was a clusterfuck from the moment we arrived at the Key West airport. The security line was the length of the airport, the departure board wasn’t updated regularly, and I don’t think a single flight took off on time. The waiting area was standing room only and barely even that. We were cutting it close for our connection but would have made it had they been able to get the jetway to the plane and open the door in a timely manner (took at least 15 minutes after we arrived at the gate). We sprinted to our gate with ~10 minutes until departure (reinforcing that sprinting and distance running are two very different beasts and I am not a sprinter) to find the plane still there but the gate closed. We were both furious because we were on the ground while the flight was still boarding and there were 5 of us trying to make that flight. They should have held the plane. Anyway, they didn’t and fortunately we were able to get on a flight a couple hours later. We made some friends that had also missed the connection and had some food and drinks in the bar. Ultimately I think missing our flight may have been another sign from Ariella. While in the airport in North Carolina I texted a friend that we met at our bereaved parents retreats that we have gotten close to. They live in North Carolina but I knew they had been away as well. I was curious if they were still on vacation and it turns out they had just landed when I texted! Not only that they were deboarding at a gate right by ours. So we got to have a lovely, albeit brief reunion in the airport. Most of the vacation it was nice to be just us, not the bereaved parents. But there were times I wanted to shout “MY CHILD IS DEAD!” It is just so surreal to do “normal” things with others having no idea of the turmoil inside. So seeing our friends, this beautiful family in the airport, gave me that brief moment of being with someone who just knows and who feels the same, without having to talk about it. So maybe I needed that and maybe that’s why we missed our connection (sorry to the others who missed that flight!). We left with plans for a weekend together in the near future and then finally made our way home.

This was a much needed getaway and did both of us a world of good. The pain doesn’t go away just because our location changes but being out of normal routine in a place that doesn’t have memories tied to it is certainly a refreshing change.

Posted on

Just Run

7:00 Saturday morning. Still dark with just enough light at the horizon to hint at the sun beginning to rise. Gathering with the running group to prepare for our scheduled 10-mile run. I don’t really know anyone in the group yet but chat with others while waiting to begin the run. As we start off I have no idea of anyone’s pace, whether I will be running with or near anyone. But it doesn’t matter. The camaraderie in knowing we are all there for the same purpose holds me accountable. We are running in an area I have never run before. The sky is beginning to lighten and we are surrounded by trees. It’s cool and overcast, the perfect running weather.

Runners are running various distances on this out and back course. We start as a group heading down the steep hill and quickly settle into our personal paces. I found myself alone much of the time on this run but not really. Plenty of other runners and walkers and even a couple of dogs. There were runners ahead and behind and mostly I just focused on the beauty of the world around me. The course may have been out and back but there was nothing ordinary about it. As I was running along the curvy road up and down the gigantic hills I couldn’t help but notice the splendor of the trees, the peacefulness of the reservoir, and the stillness. Much needed respite from the chaos of the world. On this run I was listening to my Peloton playlist (when on the bike you can “like” songs and they will then be put in a playlist on Spotify). The music was quite random, ranging from pop to rock, to 90s hip hop, to punk, to new wave, to Broadway, to classical. I love running to classical music, especially on long, easy runs. The classical songs that played on my run served as the perfect soundtrack to running in my picturesque surroundings. The music allowed me to run without distraction and just enjoy being in the moment.

The course was challenging but flying down those steep hills brought some joy. Memories of being a child with no limitations and no fear. Doing everything at top speed with no fear of falling. Running fast downhill brought a sense of freedom and flight, like I was temporarily escaping the pain and pressures on Earth. The moments were brief but exhilarating. Of course after every downhill there was a steep uphill, but oh what a sense of accomplishment as I crested the top and got to soar once again.

It felt great to gather with the others after the run and just share some of the experience, knowing that while we all have the same goal (to run a marathon) ultimately we are there for different reasons. And for now this is the place where I am just “me”. Not the bereaved mother, not the person wearing a mask pretending all is fine, but someone just there to run. Maybe my story will come out later, maybe not. In the meantime, I am going to just run.

Posted on

Chicago Here I Come!

This will be a short post but I think important to note. I haven’t blogged about many of the positives that have happened, but in all honesty I feel like not much great has happened for me since Ariella died. Life has had its ups and downs but since Ariella died it has just been so many more downs than ups. With our non-fruitful efforts to have another child and our dog dying and struggles at work (for both of us) there hasn’t been so much to cheer for. Things just haven’t been going my way. So I want to share when they do. May not seem like big things but for me they are. It’s these tiny things that make life bearable, that give me something to look forward to.

First, David managed to score tickets for the Foo Fighters contest in May. And not on the lawn, but actual seats. I haven’t been to a concert in a long time and I have to really love a group for me to spend the money and deal with the hassle. Tickets don’t go on sale to the public until tomorrow but David got a presale code and was able to secure tickets on Tuesday (one day after I saw that they would be in town).

Second, this just happened;

I entered thinking there was little chance I would get in. I have been selected for every race that I have entered by lottery (3 times prior to this) and thought it wouldn’t happen again. But it did! Not only is this supposed to be such a fun and fast marathon, it will continue to give me something to look forward to and a purpose, something to work for. I feel more grounded when I have something to achieve. I don’t feel quite as aimless. So Chicago, here I come (in October)!

That’s really it for the moment. I haven’t experienced many positives since Ariella died so I want to note them when I do. Kind of a reminder that with the pain there can be moments of gladness.

Posted on

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?

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.