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?
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.
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.
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.
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.
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.
If this pandemic has taught us anything, it’s that we, (the collective we) are quite adaptable. If we had been told a little over a year ago that soon we would be wearing masks wherever we want, that we couldn’t go wherever we want when we want, that school buildings would close, with learning to take place in the virtual world, that countries would literally be shut down, we would have a hard time imagining it. We would think there was no way we could get through it, that life could not go on that way. I recently read a science-fiction book about a pandemic, that was published in September 2019, so before our world became unfamiliar. Though the cause of the pandemic was different (in the book it was a series of terrorist attacks) it was eerily prophetic. From virtual school and concerts to social distancing and no physical contact, it was uncannily similar to our world today. Part of the story was from the viewpoint of someone who barely remembers the time before the pandemic and she can’t imagine being in a crowded room, standing near strangers on a bus, or attending a live music show. They adapted. The world adapted. In this novel it took quite a while for the world to return to what we consider to be normal, and it hadn’t come all the way back to the pre-pandemic times. This science-fiction novel is our reality and though we may not like it and we may be experiencing serious fatigue, we have adapted. We have moved to online learning. We work from home. We wear our masks, some of us all day long. If you had told me a year ago I would be exercising with a mask on, I would have said not a chance, and yet now I do. We still go to the store, or if not comfortable with that, we have our groceries delivered. We continue to participate in events and activities, mostly virtually or outside. In a nutshell, we have gone on living our lives, even though they look quite different than a little over a year ago.
It’s quite incredible, really, this ability to adapt. Almost against our will. Ariella adapted to her illness. She adapted to her frequent hospital stays, her new very unpredictable life, her symptoms and side-effects. She carried a puke bucket around, decorated her crutches and made them more comfortable, bought many beanies but often went without. This was life now. As a family we adapted. We made our hospital stays fun when we could. We decorated the rooms and brought comfort items from home. We brought food and games and even wine. It became normal. Every other week we packed our bags and made our way to the hospital. David and I took turns spending the night. It was just what we did. When Ariella was diagnosed we could not fathom being in the hospital every other week for 10 months. How would we get through it? But somehow we did. And we managed to have a good life outside of her illness.
In the same way, I’ve adapted to my grief. My body has adapted to my grief. This does not mean that I am not in pain everyday, or that I don’t think about Ariella every second of every day. My grief is a constant companion, clinging to me, that I just have to live with. Unshakable. In the early days… well really, it is still early days. Not quite two years. A blip when you consider I could live decades longer. It’s only been a minute. But in the very early days, weeks and months following her death, I couldn’t function along with the grief. I did not know how to do anything through the pain. It took up all my space, my whole soul. There was no room for anything else. It covered me, cloaked me in its darkness. Prevented me from doing anything else, including sleeping. It was a good day if I made it to the couch. A very good day if I managed to eat and shower. My body hurt. All the time. I was fortunate to not have to work for several months. I don’t think I could have. But slowly I got used to the empty feeling. I was able to go through the motions of living along with the pain. Though nothing can fill this hole that is the result of Ariella leaving this world, my body has gotten used to living with this despair. I still wake up every day wondering how I am going to get through this day, and the next, and the next. I still can’t wait to go to sleep at night. But somehow I have returned to “normal” living. Though I haven’t felt happy since the day Ariella went on life support I am able to participate in life. But the pain isn’t any less. I don’t miss her any less. In fact I miss her more every single day.
David and I went for a short getaway a couple of weeks ago, to a small town on Maryland’s eastern shore. It was a place neither of us have been (but for a few hours for a wedding) so it wasn’t fraught with memories of Ariella and family time. Or at least it shouldn’t have been. But the drive there was half of a drive we took many, many times with Ariella for beach vacations. There was the place I stopped to feed Ariella when she was a baby and wouldn’t stop screaming in the car. There was the place we stopped to clean her up because she got carsick. There was the restaurant we ate at and the outlet mall we shopped at. There were the low flying planes by the airport that she always pointed out. The drive alone brought back so many memories, with no more to be made. Playing the alphabet game, I Spy, other games Ariella made up. The excitement of the destination, the vacation that lay ahead. I don’t think I will ever be able to go to this beach where we spent so much time as a family.
You’d think, though, a place we never took Ariella would be safe. We had a nice time but there were still so many moments that I wanted to share with Ariella, or that Ariella would have loved. All the little knick knacks in the cute little shops she would have asked for. The candy shop with the “unicorn horns” (flavored marshmallows on skewers). The families that looked like ours once did enjoying ice cream in the sunshine. Riding bikes. A small little beach hide-a-way filled with shells and rocks to collect. It was good to get away for a few days. The change of scenery was therapeutic. But still. Life is full of moments that I will never again get to share with Ariella. And that is what is so heavy in my heart.
It’s been quite some time since I’ve written a post. I haven’t stopped writing, I just haven’t written anything I’ve wanted to share. Lots of rambling thoughts and emotions, stuff that didn’t make a whole lot of sense. I just needed to get it down. Anyway, this is a very difficult time of year. Between the anniversary of my father’s death, the anniversary of diagnosis-day, the anniversary of Ariella’s bone marrow transplant and the harrowing months until May, it’s exhausting enough that I just get out of bed each day, much less work and take care of what I need to. I’m tired. I’m fatigued to my bones and once I’ve taken care of the necessities I have nothing left to give.
I still don’t know what to do with myself. I crave a family, a child to take care of, and we are trying to make that happen but I’m not so optimistic. I don’t let myself get excited about it. If it happens, it happens (I am not seeking advice for adoption or IVF or any advice at all, we have explored many options and know what they are) but at this point I just don’t think it will. And though it’s been almost 2 years I still can’t imagine living the rest of my life without a child of our own. There are so many small, seemingly unimportant moments that I am missing greatly and I still don’t know how I am going to survive. You’d think by now I would have an idea, but that’s not how it works. Even living the unfathomable it’s impossible to believe this is my life. Where do I go from here?
David and I are currently taking classes to become licensed foster parents. We have not definitively decided that we will go that route but it is something we are strongly considering. It’s a long process so we decided to go ahead and start it knowing that we aren’t committing to anything at this stage. There is so much to consider but the thought of having a child in our home again is one of the few things that can bring me joy.
So here we are. Not a lot to say. Kind of in a holding pattern. I don’t feel peace or happiness and I’m still just trying to get through the days. I’m seeing friends’ children and Ariella’s friends growing up around me and it hurts so much. The feelings are impossible to describe. I feel like a spectator in life, watching with envy all that I can’t have. Each day the same as the one before. And all I want to do is sleep through it all.
When a girl imagines being a mother most of her life, what happens when that dream is cruelly stolen from her? I always wanted to be a mom. I had other dreams of course; I imagined myself in different jobs and living in different places, but always with a family. As an only child myself, I always thought I would have at least two children. But Ariella completed our family. David and I never felt that we needed more children. Our family of three was perfect. How lucky we were! We had everything we wanted.
While I always wanted kids, I never pictured myself as a stay-at-home parent. That desire to continue to work was most definitely reinforced after Ariella was born. Being home all day with a baby is hard! I needed time for me. Being a mom was my most meaningful and most important job, but being a parent was not my only role, and not the only way I found meaning. I am a wife, a friend, a daughter. I have a career that I love, that is quite fulfilling. I looked forward to getting out of the house each day, being with other adults, and having conversations that were not just about our children. As much as I loved being a mom and always wanted to be a mom, I did not want that to be my only identity. There was so much more to me than being a parent.
So why do I now feel like my only identity is that of a bereaved mother? That my child is dead pervades all of my thoughts, no matter what it is that I am doing. My experiences now are all viewed through the lens of a bereaved parent. Things that used to bring me joy, no longer do. Why is that the only thing that seems to matter now when trying to find meaning in life? All those things that gave me purpose before just don’t seem to matter now. All that matters now is that I am no longer a mom to a living child. Any sense of meaning and purpose has left me. Everything feels so futile to me. Rationally I know this isn’t true. I work with children. What I do is important. But it no longer feels important to me. It doesn’t give me the same sense of meaning it used to. Because nothing is as important as the fact that Ariella is gone. What it comes down to is life versus death. None of this shit matters as long as you are alive. Again I know logically this isn’t true. It matters very much to those who haven’t experienced such loss. It used to matter to me. But now I just cannot bring myself to care. All my purpose is gone. My reason for being, my reason for living. I feel like I have nothing to live for. Each morning I get out of bed and go through the motions of the day, not out of any sense of purpose, but because I have no other choice. I need to eat, I need to pay bills. If I could curl up in bed all day under a mound of blankets, I would. But against my will my heart continues to beat and lungs continue to breathe and because of that I have to go through my daily routines, such that they are.
Each day feels like the movie Groundhog Day, especially during a pandemic. Wake up, work out (the only thing that keeps me sane), work from home (no commute to help kill time), count down the minutes until I can reasonably make dinner so I can get the evening going and over with, and watch TV with my husband while counting down the minutes until I can reasonably go to bed. Of course there is some variation. I actually do go into work once or twice a week and I go to the gym a couple evenings a week. But mostly it’s the same day in and day out and not enough to distract from the pain and heartache and no other children to care for to keep my sense of purpose alive.
Even though parents have other roles, the role of parenting is generally the most prominent and most important. Lives are centered around their children. Their schooling, activities, family time. From the seemingly small tasks such as packing lunches, doing laundry, chauffeuring them around, to the big milestones such as birthdays, recitals, graduations, etc., being a parent is a 24-7 job. I never thought I would miss those mundane chores but I think they are what I now miss most of all. Because those chores are the essence of parenting. The daily tasks of keeping your child alive, healthy, and functional. I still, a year and a half later, do not know how to fill those hours that used to be taken up by parenting. So many hours that feel so empty and so very quiet.
So then how does one find meaning when their only child dies? The answer is I just don’t know. I’m certainly doing things that would be considered to be meaningful. Keeping Ariella’s foundation going is a way to find purpose again. But I wonder sometimes if the pain of running the foundation without her is worth it? Because it is so very hard to watch it grow when Ariella never got to see it through. She never got to finish what she started. It doesn’t feel good doing it without her and yet I know that’s what she would want. It should feel good, knowing I’m keeping her legacy alive, but I’m not there yet. Maybe I never will be. What about other ways to find meaning? The things I used to find meaningful I just don’t anymore. And the truth is, finding meaning will never make her death okay. I had meaning and it was stolen from me. I didn’t need to lose a child to find gratitude, to learn to appreciate life, or whatever other nonsense people spew that somehow should make it okay that your child died. There is nothing that will ever make it okay. Finding meaning does not make it okay. It just gives a reason for living. It makes life less miserable. But here is what I think. I think someone who has experienced such loss does not find meaning until they do. As in, it just happens, when that person is ready for it to happen. I read David Kessler’s book titled “Finding Meaning: The Sixth Stage of Grief” and I found it unsatisfying. I’m not sure why. I think it’s because he implies that healing and finding meaning are choices. I don’t disagree that there is some choice involved in living, in more than going through the motions. I can choose to see friends, exercise, get out of the house, or I can choose to completely disengage. However I cannot choose for those activities to be meaningful, or bring me joy. They lessen my suffering but don’t lessen my pain, and there is a difference between pain and suffering. They serve as a distraction, a way to fill my time, and that is why I do them. But happiness, purpose, that’s not the reason. I’m still too raw, too new to this pain and loss to experience the happiness those activities used to bring me. And to imply I have a choice in the matter upsets me. I feel what I feel and maybe one day I will find the meaning and happiness, but that day has not yet come. But even though I don’t particularly want to, I am choosing to live, choosing to engage, in the hopes that one day I will find moments of purpose and joy and peace. Because this existence I am living is miserable. I cannot fathom decades of feeling this way.
So what now? I continue with my routines. I get through life day by day, sometimes minute by minute. I fear that I will never again find something that was as meaningful as having a child. I can’t pretend to know what it’s like for bereaved parents who have living children. Not only are they grieving, but they have to be present for their grieving children. Does caring for their living children make things a little easier? Not their loss, nothing can make that loss any easier. But do they still have their sense of purpose? Do they have an easier time getting out of bed, going about their day? Or do they also feel lost and unmoored? I’ve heard from bereaved parents with living children that they feel pulled between two worlds. They want so much to be with their child that died, but they don’t want to leave their living children behind. How can you be fully present when you are straddling those two worlds? I’m not sure how they reconcile those feelings but I am jealous that they have other children they can nurture and watch grow, and parent daily. I miss that life with all my being and the only thing I wish for as much as I wish to have Ariella back is to be a parent again. Because I think parenting is the only thing that will bring me that same joy and purpose. Everything else just feels hollow. If only it were that simple.
Here we go again. The holiday season. The days of anticipation, the smell of cinnamon in the air, the crisp breeze, the family togetherness. The days get shorter and colder, but they also used to be cozy and inviting. Now they are just dark and dreary, lifeless. I used to love sweater weather, getting outdoors, then coming home and curling in front of the fire. Now I just want to hide, bury myself. I would love to just curl up into a tight little ball, lay under a mound of blankets, only to emerge in January when the joy and excitement has passed me by. I want nothing to do with any of it. I just want to envelop myself in darkness and ignorance, go through the motions to just get through the days, and hide away once again. And to be honest, that is probably what I will do.
Ariella loved Thanksgiving. She made placemats and decorations for the table. She wrote a menu. She set the tables hours before our family was going to arrive. Thanksgiving without Ariella is just not Thanksgiving. And while I know that there are many things for which I could be, should be, thankful, the only thing I really feel thankful for anymore is that I got to be Ariella’s mom. That I got to know, and parent, and love Ariella, and feel her love in return. That I got to feel her hand in mine, feel her arms around my neck. That I got to share in her joy, nurture her, see the world through her eyes. Otherwise, not feeling grateful for much of anything. Other than sadness and pain, I don’t feel much of anything. I am definitely not feeling any type of joy or happiness for the days to come.
Last year David and I went away for Thanksgiving. For several reasons, that isn’t possible this year. But the last thing I want is a traditional, family dinner where all I will notice is Ariella’s glaring absence. So we aren’t doing it. We aren’t spending Thanksgiving with the rest of our family, where people will be laughing and joyous and happy to be together (and with Covid numbers on an alarming rise it’s not a good idea to have gatherings anyway). We aren’t having a Thanksgiving that looks like our usual holidays. I don’t know how we will mark the holiday, if we even will mark it in some way. If I could go to sleep the Wednesday before Thanksgiving and wake up Friday, I would. If I could go to sleep Wednesday and wake up in January I would. Because Thanksgiving is just the beginning. I know there are plenty of people grieving the holidays because of the pandemic. Because they may not get to spend the days with their loved ones. Because the holidays will look different for most, not just us. But for us, it’s permanent. We will never get to spend another holiday with complete joy and excitement. We will always feel incomplete. We will always feel Ariella’s absence, not just on the holidays, but every day. And the last thing I want to do is celebrate anything without Ariella.
I don’t sing along with the radio anymore. I don’t dance. I no longer find joy in the simple things; a beautiful day, a field of sunflowers, a happy song. I’ve heard that one day I will feel happiness again but right now I just feel empty, numb. Wondering what the point of it is, the point of life. I am certainly not finding joy in the holidays. There is none, not without Ariella. Please consider this when caring for someone who is grieving. Don’t wish them happy holidays without thought. Sure, your intent may be good but there comes a time when intent just doesn’t matter anymore. Insensitive comments hurt, well-intentioned or not. If you have a relationship with a grieving person, you have to put thought and care into what you say. Don’t ignore them on the holidays. Let them know you are there, that you are thinking about them. If they don’t want to celebrate, bring them a meal so they don’t have to cook, or take them out for a drink, or go grocery shopping for them so they aren’t slapped in the face with the holiday décor and foods, or offer to take care of their pet so they can get away. Meet them where they are, not where you want them to be. It’s not fun walking on eggshells around someone you care about, but you may just have to at times if you want to keep a relationship with a person who is deeply grieving.
