Author: stein28

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My Chicago Marathon

Almost exactly a year ago I wrote a recap of my Baltimore Marathon experience (can be seen here: https://lifeafterchildloss.net/the-evolution-of-a-marathon/). The actual marathon was October 9, 2021, exactly 1 year before the Chicago marathon! The Baltimore marathon was not my day and I was looking for some sort of redemption. During my winter training for the spring marathon I was in the best shape I had been in for a long time and knew a Boston qualifying time was in reach. But then injury struck and I did not get my redemption. After that I just hoped I would be recovered enough to run the Chicago marathon.

I’m not able to recap the Chicago marathon the way I recapped Baltimore in part because I just don’t know Chicago so I don’t remember certain streets or where certain miles were, etc., but also because it was just so incredible and I was having so much fun (until I wasn’t, read on for the details) that nothing stood out for me in any particular area. It was all just great and the miles blurred together. I will do my best to share my feelings and emotions throughout the day, and really the whole weekend.

We arrived in Chicago Friday night, too late to do anything but settle in and try to relax a bit before the busy weekend ahead. The check-in line was long but the excitement was palpable. Mostly runners, all there with different goals but the same purpose, to run a great city. Saturday morning I joined a very large group for a shakeout run put on by Tracksmith Running. I was looking forward to meeting Tina Muir, former elite runner, and host of the Running for Real podcast. She is open to sharing her vulnerabilities so I felt comfortable approaching her to tell her my story and how a recent podcast guest who lost his son to cancer, resonated with me. We chatted a bit and I shared my story with her on the run as part of her podcast (neat episode, lots of different stories). The run was beautiful with lovely scenery and even lovelier people. I was nervous about my leg so it was a confidence booster to get out there and run a few easy miles. Really helped the nerves settle but also build the anticipation for the race the next day.

After this we hit the expo to pick up my race packet. I was looking forward to this but once there was completely overwhelmed. The crowds were ridiculous (which makes sense, over 42,000 runners descended upon Chicago) and after looking in a few booths David and I both felt the need to get out of there. Was a bit disappointed that I couldn’t just take it all in but I knew for my sanity it was not a good idea to continue to try to navigate the crowds. It would just exhaust me so instead of spending hours there we relaxed a bit before a pasta dinner, followed by dessert with his sister and family. We don’t get to see them often and it was a joy to spend some time with the kids whom we haven’t seen since 2016, when we took Ariella there to visit. My niece reminds me so much of Ariella that it was like she was there with us. The eye rolls, the attitude, the way she spoke. But by the same note, Ariella loved her cousins and they adored her, and her absence was glaring. But we talked about her and reminisced and before we knew it it was time to head back to the hotel for much needed sleep.

Sunday morning. Alarm goes off at 4:30. It’s race day!!! I got flat me ready last night so I wouldn’t forget anything this morning. I even made sure to have Ariella’s lucky panda tucked into the pocket of my hydration belt. I do all the things and join the thousands of runners heading to the start line. There is a buzz in the air, it’s electrifying. Not feeling too nervous yet, or much of anything else, just cold! Take in some more food and hit the bathroom a few times and then head into my start corral about 20 minutes before my wave starts and that’s when it all just hits me. What I’ve been through to get there. What I’ve overcome. Who I’m running for. Ariella literally on my back. All those that can’t run. That I don’t have to do this but I GET to do this. And I just start crying. And I don’t mean some quiet tears escaping, I mean full on bawling. And I’m pretty sure I wasn’t the only one. There was lots of nervous energy and the last 10 minutes before the start of the wave lasted a lifetime. Finally it’s time for wave 2 to start but as I was in the second corral of wave 2 I didn’t cross the start line until 8 minutes later. Oh but what I feeling once I did! The months of training, the injuries, the leg that’s not quite right, all the things that threatened to keep me from running this race, all in the past. As I stepped over that start line all I said to myself was “I am going to finish this race.”

Runners have different goals when running a marathon and though I said over and over (more to convince myself) that I wasn’t expecting to reach my A goal, and that wasn’t even my goal for this race since I was coming back from injury, it really was my goal. My A goal was a Boston qualifying time (3:50), B goal was sub-4:00 and C goal was to finish with a PR. And through 2/3 of the race I thought the farfetched was actually within reach. For 18 miles of the race I felt great! The first mile was electric. The crowd support cannot be described and I felt like I was flying. I was careful not to go out too fast. I was soaking it all in. The noise and cheers of the crowd, the music, the shared experiences. I saw David and after hitting that 1st mile mark I thought, that was easy, just 25 more to go! And it was easy. I was having so much fun and nothing could stop me. My pace was comfortable and I picked it up just a little after the first 10K. I wasn’t looking at my watch (which wasn’t accurate for most of the race anyway, hitting the miles too early) but just running by feel. I actually felt like my A goal was achievable. When I felt like I may be pushing too hard, I pulled back. I was trying to run smart and it was truly exhilarating. Nearing the halfway point I saw David again amongst hundreds of other people and was happy to still be feeling strong at that point. I allowed myself to imagine crossing the finish line achieving everything I wanted, but was still cautious. And it’s a good thing I was. Around mile 18 was when I thought I was in serious trouble. Out of seemingly nowhere both calves started cramping. That wasn’t enough to stop me initially but it certainly slowed me down and I saw my A goal slipping away along with the 3:50 pacing group. I almost wish it hadn’t felt like that goal was within reach because it made it that much harder when it disappeared with “just” 8 miles to go. I was begging my body to keep going, to not quit on me. To allow me to just run through it. I was thinking of Ariella, all the pain she went through and how she came through even stronger, how it didn’t crush her spirit even a little bit. And I kept running. And then I had to stop. I had to stretch. And I just started crying. I was so frustrated. I did everything I was supposed to do. The only thing slowing me down were the cramps. And they wouldn’t let up. The remainder of the race went on like that. I would run as long as I could at a pace my legs could handle and stretch when needed. I began walking through the water stops to give them even more of a rest. I downed pickle juice at mile 22 which is supposed to stop cramps in their tracks, but did nothing for me. Was hoping at some point they would just go away, but they didn’t. The sun was beating down and I started feeling really hot but I did not go that far to only go that far. Ariella never quit so neither would I. Between miles 22 and 23 you could see the sign for mile 24 on the other side of the road and I cannot express how much I just wanted to cut the course and get to mile 24! I didn’t of course but that 24 mile marker was just there, taunting all of us running by before we could make that turn to head back down towards the finish. At mile 23 I did the math and realized that a sub 4:00 marathon was within reach. To force myself to keep running I would find various markers and tell myself I just had to run to that marker, and then the next, and then the next. Less than 30 minutes to go, less than 20 minutes, less than 10 minutes, less than 5. I can do anything for 5 minutes. I know for sure that B goal is going to be achieved. At the top of a hill just 200 meters to go. Most were groaning up the hill but I welcomed it because my calves felt much better running up that hill rather than on the flat ground (plus that hill was nothing compared to what I trained on!). I practically sprinted up that hill. And then turn the corner and the finish line is in sight. I gave it everything I had. And I came in at 3:56:22, a 24 minute PR and my B goal for sub-4. Frankly I’m glad if I wasn’t going to make 3:50 that I wasn’t super close because I think that would have been more frustrating. I crossed the finish line and just started sobbing again. Tears of joy and tears of frustration. It wasn’t the race I wanted. But it was for a large part of it. I limped my way through the finish area, got my gear, changed, and then made the seemingly endless walk to meet David.

I was on a high the rest of the day. As we spent time in the city we could easily identify the runners by their awkward walking gaits (and of course the medals and other marathon gear)! All of us that ran wore our medals with pride the rest of that day. All around you could hear people talking about the race, their successes and disappointments, their accomplishments, their favorite signs, what it meant to them. The magic was still in the air as the city was overtaken by runners. As for us ,we spent time with dear friends of ours, also members of the childhood cancer community. Ariella and their daughter Ava were immediate friends and remained great friends in the short time they knew each other. Of course Ariella’s absence was once again at the forefront of my mind during our dinner but we were sure to leave her mark behind.

And just like that it was our last day in Chicago. We went to Under Armour to get my medal engraved, had a delicious breakfast and then headed home. The airport, just like the city, was taken over by runners and it was fun to be among them. I have run other big races before, Marine Corps Marathon in 2001 and NYC Marathon in 2006 but this one felt extra special. Maybe because with the advent of social media there is much more awareness about the race and activities surround the race, and more hype. Maybe it’s because more and more people seem to be taking up running. Being a part of a training group and also social media groups builds up the anticipation to race day. There is so much support and encouragement it’s impossible to not get caught up in the excitement. And following the race there are so many ways to share our stories. The city of Chicago, the various neighborhoods, the people, made this experience exceptional. I pushed through, didn’t quit, and had the experience of a lifetime. As for what’s next, I’m not sure. After the Baltimore marathon I was immediately ready to sign up for another race for my redemption. This time, not so much. This training cycle and race beat me up and I’m looking forward to a couple of weeks of no strenuous activity before deciding what I will do next. Thanks to all who supported and followed me on this road to marathon redemption. I was disappointed when I had to cancel my spring marathon but this marathon more than made up for it. And yet I know I still have room to grow so stay tuned!

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Dear Ariella,

Happy Heavenly Birthday. Yesterday you should have turned 15. It’s hard to believe that I could have a 15 year child. And I do. I have you even though I no longer physically have you. You are with me, and have been for 15 years. You will never leave me and yet you are missing from me. Each year now on your birthday I try to imagine how we would celebrate and what you would want. And each year it gets harder and harder to picture. And that breaks my heart even more. I no longer know what your passions would be, your dreams or goals. I don’t know how you would dress, how you would wear your hair. I don’t know if you would still be dancing or if you would have picked up a new hobby or sport. I used to know almost everything about you and loved it when you surprised me with something new. When I picture you it’s as an 11-year old girl, not as a teenager who would be on the verge of learning to drive, going to dances with friends, dating. Your friends are growing up and I hate that they are leaving you behind. To be clear, they are not forgetting you. They love and miss you and are keeping you alive through Ari’s Bears. But it’s not fair and it will never be fair that you don’t get to experience this life. How much you will miss out on. You were going to take the world by storm and you did, but you had so much left to do. I wish I could know you now, and in 10 years, 20 years, for my entire life. What I do know is that no matter what you would have continued to be an amazing, spunky, generous, kind, loving, goofy person who brought joy to all who knew you. I hope you partied it up for your birthday with your too many young friends that have joined you and of course Pop-Pop and I’m sure you are celebrating his birthday today. Give him a birthday hug from me. I love you to the moon and back infinity times and will miss you every second that I am alive.

Love,
Mommy

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Fall

You would think February through May would be the toughest time of year for me and it certainly isn’t an easy or fun time for me, but fall is harder. Fall was my favorite time of year. Fall was Ariella’s favorite time of year. Fall was the time for family. Apple picking, pumpkin picking, hayrides. Ariella’s birthday. My father’s birthday. The crisp air, the bright colors, the new beginnings. New school year, fresh starts, cool evenings, and the beginning of boots and sweater weather. Fall was comforting, like a warm blanket warding off the chill. Now it just mocks me, taunts me with what I no longer have. The quiet has replaced the laughter, the daily grind of just trying to survive has replaced the pranks, avoiding trick-or-treaters has replaced excited costume preparations, and while I still enjoy the fall weather and colors I miss everything else we used to do so much that it still physically hurts when I think about it. Fall is also when something was first wrong with Ariella but none of us had any idea how serious it would be. At that time Ariella had begun losing weight. We were working with the pediatrician to determine the cause but all her labs were coming back normal. Ariella had also been complaining of pain in her leg but it was off and on and an x-ray at the time showed nothing serious. She was given crutches but used them sporadically. She had them the last time we went apple picking, sometimes using them and sometimes just holding them and walking without any problems whatsoever. What if? What if we took that injury more seriously? What if we went for more follow-ups? What if we told her pediatrician about the leg pain? Would he have connected that to the weight loss and explored further? What if she started treatment sooner? What if we started treatment then instead of months later and maybe the tiny cancer cells wouldn’t have broken off and removing the tumor would have removed all the cancer? What if, what if, what if? Fall brings me back to all the things we could have done differently. I know this is illogical. I know hindsight is 20/20 and maybe none of that would have made any difference. But we will never know.

Last weekend we again went to CureFest, a childhood cancer rally. The first year we went was with Ariella, in 2018. She was in treatment for the second time and we were optimistic. You can’t lose hope. Hope is what carries you through. And CureFest for most is a time of hope and advocacy and seeing the possibilities. But for bereaved parents it’s different. The hope is gone. The only thing we wish for we can’t have. It’s important to advocate and make our voices heard so other children and families don’t have to go through it. Childhood cancer research is grossly underfunded and without all our voices it will continue to be so. But still. It’s still too late for our children and I would be lying if I said that I didn’t harbor jealousy, resentment, and bitterness. CureFest is very tough for me but I also plan to keep going. Anything we can do to provide even a little bit of comfort and joy to the children makes it worth it. And judging by the smiles that day and how busy we were, we were able to make many kids happy that evening. But even more valuable to me is getting to see other families we have met along the way. Especially the other bereaved parents. Because there is nothing like just being with others who understand.

I’m trying to keep busy and maybe even change the meaning of fall for me a bit. Trying to bring back some of the positive connotations so I don’t feel like I’m drowning. I’m winding down my training for the marathon which is good because my leg still isn’t feeling perfect. Nothing serious but not being able to give it as much time to rest has been a challenge. Fall is my favorite time to run so not being able to run as often as I would like is also difficult. But I am looking forward to the marathon and then exploring new opportunities, like becoming a run coach. I say if I ever were to change my job (which I’m not, I love what I do), I would go into something fitness related. Being a run coach would allow me that but also continue doing what I do. But I need to do something. Something meaningful, something with purpose, outside of my day job. I feel lost. I haven’t found my new identity, other than bereaved mother, and I want to be more than that. I just haven’t figured out how. Because no matter what I do, that person is in me, is me, even if those around me don’t realize it. I still find it to be such a strange dichotomy, suffering this terrible loss and being in significant pain every day, but also going about my normal life and even laughing and having fun. It shouldn’t make sense. And yet. Life goes on.

I still pay attention to signs everywhere, especially when times are especially tough. In addition to this rainbow, the name “Ari” was an answer in my crossword puzzle yesterday.
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My Colorado Vacation, Etc.

It’s been a while. Not sure why. Just haven’t felt like putting my thoughts down I guess. Not much has changed and I bore myself with writing the same things over and over. I have been wanting to write about my vacation but I also haven’t because nothing I write will be able to capture how I truly felt. I’ve been on vacations since Ariella died and all have been good, but not like this. This didn’t feel like a vacation. This felt like a respite and it felt like coming home. For the first time since May 2019 (actually probably since February 2017 when Ariella was diagnosed) I felt like I could just breath (well other than not being able to breathe due to the altitude). I finally felt calm and at peace even though we were active the entire time. It was the mountain scenery, the fresh air, and the sun. It was the laid-back pace and the nice people. It was having so much to do outdoors and just being able to soak up nature. For a moment I didn’t have the constant feeling of despair and lump in my throat. Since Ariella died I have been plagued by physical symptoms. I just never feel quite right in my body. And I always feel anxious, uncomfortable in my own skin (honestly that’s been the case all my life but has increased to the nth degree since Ariella died). That feeling was much diminished for the two weeks we were away. I’m not going to recap our entire trip because it’s not about what we did but, but rather about how I felt, what it did for my soul. I felt Ariella there. I missed her of course. I imagined doing the activities with her. She would have loved the zip lining and rafting and the hiking. And the donkeys! She would have adored the donkeys! She would have loved all of it. There were signs everywhere. While I was thinking of her the entire trip, her loss and presence was felt in a different way, a way that I cannot really explain. And I finally felt like I may one day be, while not truly happy and never whole, at peace. I hope that we can actually move to Colorado in the near future. It gave me something I didn’t know I needed.

Leadville Pack Burro Race
Garden of the Gods
Black Canyon of the Gunnison
Rocky Mountain National Park
5K on the Mountain in Snowmass
Top of Pikes Peak
Broadmoor Seven Falls
PHOTOS DO NOT DO IT JUSTICE!!! (Images in no particular order, I have a lot of trouble uploading pics to this site)

Every September (childhood cancer awareness month) since 2017 I have filled my newsfeed with facts about childhood cancer and my feed is filled with gold and facts from other childhood cancer parents. I don’t have it in me to do this year. I changed my profile and cover pictures and that’s the extent of it. I’m preaching to the choir and I’m just tired of having to educate others. September is overwhelming and sad and frustrating and inspiring and triggering and hopeful but mostly I just want to ignore it. I’m bitter and resentful. No matter what I do, no matter what changes with funding and research and medications, it’s too late for my child. And of course I don’t want any more parents to hear those words “your child has cancer” and of course I don’t want kids to keep dying. But I’m jealous. And every time I see a post about ringing the bell, clear scans, 5 years NED, I am so happy for that child and family AND I am so sad that it wasn’t also my child. All that said, I minimize my consumption of social media in September (I’m posting on Instagram for my running and Instagram and Facebook for Ari’s Bears but don’t scroll much) and just trying to get through the days as per usual. It is a shame that childhood cancer awareness directly relies on those experiencing childhood cancer. Some businesses/organizations get involved but not enough. I do hope for a day that September is as gold as October is pink.

I had intended to incorporate my running in this blog since it’s my way of working through my grief but I’ve neglected to do that as well (I am sharing my running on Instagram but not much here). Running is once again frustrating for me at the moment. I have finally almost returned to my fitness level pre-injury and am again feeling something going on in my right thigh/hip/groin area (same leg that had the stress fracture). I only ran one day last week, an 18-miler to try to give my leg some rest. My leg was okay during the run, no pain, but could feel twinges and niggles and some achiness. I wasn’t sore after and could walk normally so after a couple of days of rest I did my track workout last night. Same thing, could run with a normal gait without actual pain but definitely feel something going on. Rule of thumb is it’s okay to run through up to a 3 or so/10 pain level as long as you’re not limping and your stride doesn’t change but my fear is that I am at the start of an injury so if I continue running on it even without pain now, it will get worse and by the time I feel pain when running it will be too late. If I wasn’t training for a marathon I wouldn’t be so concerned. I would either lay off for a while OR try a couple more runs since if I was sidelined I wouldn’t miss a race. But I feel like it’s no win for me right now. I can take time off now and be undertrained and derail the fitness I gained back, or try a few more runs and risk injury. It’s really not a choice, I definitely am going to take some time off because I really want to get to that starting line. But it’s frustrating not knowing what actually is going on. Is it muscular, a nerve? Bone? There’s just no way to know. With my world being so overwhelming I rely on running to help clear my head and relieve some of my anxiety and stress. Life just seems that much harder when I can’t run. I don’t think this is a serious injury and that I will be back to it, but I wish that just one thing can go smoothly for me. Despite my leg being not quite right, I had a great run this weekend. I was scheduled for 18 miles and had a 12 mile race that day so added 6 miles at the track prior to the race. I thought running 24 laps would be awful but I actually found it quite meditative. Didn’t have to think or plan and could just enjoy the quiet. When it came time for the race I had no intention of actually racing it, was planning on doing it like all the long runs, at an easy, conversational pace. But I was feeling great and my pace was a lot faster than I planned or expected, giving me some needed confidence prior to race day. But of course my leg is putting a damper on things. There are just over 4 weeks until race day. Here’s hoping!

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The Outsider

I am the outsider. I can’t speak for David if he feels it as well but I most definitely feel out of place. Like I don’t belong. I’m there but not fully participating. In life, in gatherings. Not by the fault of anyone else. It just is. I am the outsider in my family. They always include us, always. And understand when we don’t join. And yet I am on the fringes. Because I am always stained with sadness. I cannot fully revel in the joy or excitement of my surroundings, in the happiness of others. Especially when the whole family is together. Because it’s the whole family minus one. And the missing piece is glaring. When it comes to family gatherings I do much better if it’s just some of us. Ariella’s absence isn’t so obvious. She may or may not have been there when she was still alive. But the whole family, she would be there. And now she’s not. And so rather than being able to enjoy myself my heart is on the one person that should be there but isn’t. It’s too painful to be so aware while seeing the rest of the group smile and laugh and have a great time like everything’s okay. I am the outsider, the downer.

I am an outsider amongst my friends. Especially when in groups. Also through no fault of their own. Inevitably conversation turns to their kids. I don’t mind that. I like hearing about their lives. But I have nothing to contribute. I have no living children and I have no new stories about Ariella to share. I can’t comment on the bitter sweetness of watching our children grow up too quickly. I can’t commiserate about the trying teenage years. I can’t share the excitement of my child’s achievements. Ariella was not my only loss. I also loss my identity as a mother. Yes I’m still a mother. I will always be Ariella’s mother. And yet. I’m not parenting. Plenty of people choose not to have children. This is not the same. Because of the pain that accompanies these situations. Knowing we once had the same promise and hopes and now we don’t.

Even among other bereaved parents I feel like an outsider, except among those that also lost their only child. Those parents still have their purpose. They still get to raise kids, watch them grow up, maintain their identities as parents. As someone who has always had social anxiety, I feel even less able to relate now. It can be a very lonely place. I’ve been doing what I can to keep busy, meet new people, and just stay active. I’ve joined running groups and actually started golf lessons. It’s good for me. Good to be involved in specific activities, to be involved in something that revolves around that activity.

I have found that while my grief has changed, meaning mostly that I’ve learned to live with it and even enjoy myself sometimes, the hurt has actually gotten worse. I’m witnessing Ariella’s friends grow up, her younger friends surpass her and find myself thinking more and more of everything that was lost, the future she will never have, that we will never have. David and I went to a wedding a couple of weeks ago and for the first time I had the parents’ perspective rather than the perspective as a peer. Listening to the father of the bride’s toast and watching the father daughter dance hit me so hard. We will never have that. And in those moments that was all I could think about.

This was a difficult post to write. I’ve had a hard time getting my thoughts together and I still don’t think I’ve captured my true feelings. Someone said to me that she had hoped that I’ve turned a corner in my grief. Not because she thinks I should be “better” but because she doesn’t want to see me in such pain. I feel like I have turned a corner. I do have more moments of fun and I no longer beg to die. I don’t have moments of true happiness and I don’t think I ever will. But I can experience joy and even peace at times. It’s a dichotomy though. I don’t feel guilt, but I don’t understand how I can have those joyful and peaceful moments. It doesn’t feel right. Mostly what I’ve realized is that there is no linear pattern to grief. Just when I think I’m doing okay I’ll have a day or even just a moment that completely disabuses me of that idea, when I think there’s no way that I will make it. I still cannot fathom another lifetime of feeling this way and in fact I dread it, but I also know that somehow I will survive it and will even have some fun along the way.

On a completely unrelated topic, I’ve been pretty vocal about my feelings on signs. I ask for them and have received every sign from Ariella that I have asked for and yet am still cynical that they are just coincidences. I wish I was a true believer. I think that would make life a little easier, knowing she really is there and that we really will be reunited one day. In that sense I am jealous of those that have such a strong faith. That there is no doubt in their minds that they will see their loved ones in the afterlife. But that isn’t me. Yet I continue to ask for signs. I rarely ask my dad for signs but decided I wanted one from him. My dad always used to say “don’t take any wooden nickels” so I asked for a wooden nickel as a sign. It’s not a very common turn of phrase and I don’t think I’ve heard or seen any reference to a wooden nickel since he died. I figured the chances of getting the sign were slim to none. And then this happened…

Also has the word “heaven” Coincidence?

Still not sure what to think but I do like to think that signs are real. So I will continue to ask for them and be skeptical when I receive them!

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Do Something

It shouldn’t take tragedy to elicit change. After yesterday’s horrific tragedy, yet another school shooting, you once again see all the news, all the social media posts. “We need change”. “Something needs to be done”. And my favorite, “thoughts and prayers”. Social media statuses will be updated. Profile pictures changed. The same posts shared over and over. Parents will post about being blessed, not taking anything for granted, hugging their children tighter. This will go on for a couple news cycles and once again the country will move on. And you know who the new advocates are going to be? The 19 sets of parents mourning their young children. The families of the the two teachers. How do I know this? I know this because 1800 children die of cancer every year (47 diagnosed every day) and yet the ones who advocate for more funding, more research, are the parents of cancer warriors. I am not comparing cancer to a school shooting. I am just speaking from my experience as a parent who lost a child, who is fighting for a different kind of change. This is about fostering real change rather than empty promises. Instead of just making a post, commenting with a broken heart emoji or crying face, DO SOMETHING! Start a petition, send letters, push for safer schools, anything. Not just in the immediate aftermath of a tragedy but all the time. Don’t leave it to the parents who will be grieving for the rest of their lives. They need help.

As a bereaved parent I am so heartbroken for these parents who lost children to something that could have been prevented. And I am angry on their behalf that there is not enough outrage in between these tragedies to actually cause some sort of visible change. I’m sick of the platitudes. The common theme is that something needs to be done. But when? Too late for too many. Actual action needs to be taken before the next tragedy. Because it will happen again. And it may just be your child next time.

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1095 Days

Three years. 1095 days. 26, 280 hours. 1,576,800 minutes. 94,608,000 seconds. And I feel every one. Painfully aware of my missing piece in every second I have lived without you. Written out like that it looks like a lifetime. It feels like a lifetime. It feels like a minute. I didn’t think I would survive a minute, a second, and somehow I have survived three years. Yet I don’t feel like I can survive another lifetime.

This just doesn’t get easier. I don’t want it to. Life shouldn’t be easy without you in it. You were too special, too precious for me to live easy without you. I know what I’ve lost. I know what you’ve lost. And every day I’m reminded of it. What can possibly be easy about that? Life continues to go on. People forget. Well not forget, but for them it’s no longer as intense. They no longer realize the intense pain I experience every one of those seconds. It’s not foremost in their minds. It’s been 3 years. For most it seems like a while. For me it’s like yesterday. They have their own lives, their own joys and celebrations, their own pains, their own traumas. They think I’m okay. I’m not. I hate the question “how are you?” Most don’t want the real answer. Most are just making conversation. I feel like an imposter. Leading a double life. The one in which I act like everything is fine and the one in which I feel like I’m dying inside.

To watch your friends grow up, reach milestones shatters me. Your younger friends and family surpassing you in age. Experiencing things you never had the chance to and yet in an ironic twist of fate you had to grow up much too quickly and were wise beyond your years. How can I ever be okay with the constant reminders of what never was and what never will be? There are days I want to just scream out loud that you died. That my lovely, only child died. It feels like such a disconnect to be out in the world and living my life when you are no longer and I just feel like the world should know. Especially when I don’t feel like smiling, when I don’t feel like making small talk. Especially when people start talking about their children and their perfect lives. I smile and nod and desperately want to run away.

I am futilely trying to fill this hole that seems to be growing bigger. Maybe it will continue to grow and grow and swallow me whole. I have learned to live without you but I don’t like it. The things I do are meaningless without you. They are just time killers, a way to get through the days. That’s not to say I don’t have my moments of fun. I do. And they are more frequent as time goes on. But they are fleeting and always tainted, never pure joy. The highs often turn into lows because I don’t have you to share them with. And that disconnect. How can I be happy in a world without you? Bittersweet. Always on my mind.

It pains me to not know who you would be today. Your likes/dislikes. Your friends. Your aspirations. Your hopes. Your dreams for the future. I used to imagine you in different scenarios but it’s getting harder and harder to do that. I can’t picture you dating, choosing colleges, becoming a young woman. Well I can a little but the picture is probably not accurate. This life is just too hard and empty. No one should have to live like this and yet too many do. I will continue to do what I have been doing, just finding ways to pass the time knowing that one day it will all be over.

Three years ago we made an agonizing choice that no parent should ever have to make. We made the decision to turn off the machine that was breathing for you, keeping you here with us. The only thing separating life and death. We laid in bed with you, holding you, as the settings were lowered, and then lowered again, continuing to be lowered until it was off. Until there was only you and us and silence, and clinging to the last minute unrealistic hope that maybe, just maybe, you would take a breath on your own, then another, and another. Because hope is all we had. Without hope, how could we keep going? Hope is what carried us through from the time of diagnosis until the time of your death. Our hopes changed throughout but it was always there. Always a glimmer. Until there wasn’t. Until there was nothing left to hope for. We did not get the miracle that so many were praying for and we continued to hold you until the time of death was announced. That was when “Fight Song” came on. That was when the sun came out outside. That was when my world was shattered into pieces and that is how it remains today. I’ve tried to put back together some of those pieces but it’s impossible. Many are missing. One very important one that can never be put back, that will always leave me less than whole. They don’t fit together well. There are scars and cracks and they are sharp and jagged and cut me. I am fragile and know that it won’t take much to shatter me again, and again. And yet I’m still here. Broken.

I will forever be honored that I got to be your mom. I like to think that I was chosen for the job, that somehow G-d had so much faith in me that I would be able to parent you through an illness in the way that you needed. That I was the one picked for you to love and support you through all of your trauma. If I had to go back and do it again I would always choose you to be my daughter. Even with the pain and heartbreak, getting to be your mom makes it worth it. Those 11 years and 7 months. Not nearly enough time. But yet. I got to be your mom for 11 years and 7 months. And I wouldn’t trade that for anything.

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Dominican Vacation

Just came back from vacation in the Dominican Republic. This was a long time coming; we were supposed to go in June 2020 but maybe it worked out for the best. With the way this school year has been going I certainly needed the vacation so it came at the perfect time. This was an all-expenses paid, all-inclusive vacation gifted to us by Team Campbell Foundation (https://teamcampbellfoundation.org/). Unlike our other trips for bereaved parents, the various retreats we have attended, this was just a vacation. The retreats are extremely beneficial, therapeutic and sometimes healing, but they are most definitely not relaxing. They are agonizing and heartbreaking. Not really a chance to connect with your partner but more a chance to connect with other families which is incredible but also exhausting. Sharing your own grief can help lighten the load but taking on the grief of others can be burdensome. This vacation was just that, a vacation. Relaxing mostly, active when we needed a change, and overall just peaceful.

After a long Saturday of travelling we toasted our arrival with some beers.

Arriving at the resort we were eager to explore the property and take in the beauty of the area. We quickly settled into our routine of relaxing at the pool or beach, eating, and sometimes working out. The weather was beautiful and you couldn’t beat the scenery. It was quite calming just being there.

Though calm is good, after several days of taking it slow and easy David and I were both getting antsy so decided to go on a couple of adventures. The first was zip lining. This was something that fearless Ariella would have loved and it was impossible not to imagine her with us, soaring over the trees, screaming with laughter.

Our other off-resort adventure was dune buggies. Another one Ariella probably would have liked though it’s difficult to completely say. She would have loved the bouncing and speed but not so much the dust blowing in her face. As part of this excursion we got to swim in a cool little cave, taste some coffee and chocolate, and learn a little about the Dominican history.

It was a nice vacation. Plenty of downtime with just the right amount of activity. Time to reconnect without life to get in the way. But there were lots of families with children there. And I couldn’t stop thinking about what a beautiful family vacation that would have been. I couldn’t help but wonder what Ariella would do. At 14 she probably would have ditched us and spent her time in the teen area. She would have complained about being bored in the ocean. The waves weren’t big enough for her. She would have loved the ziplining and would have wanted to go snorkeling. But I can’t know for sure. The Ariella I know is forever stuck at 11. Who knows what her likes and dislikes would be now? Who knows who she would be? So I’m left imagining. Even though this was a place none of us had ever been, her absence was immensely felt. This is life now. Never completely content. Never able to be fully at peace.
We are so grateful to Team Campbell Foundation for giving us the gift of time free from distractions, the gift of connection, the gift of sunshine and warmth, and the gift of some quiet. It was much needed and quite restorative.

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February Sucks

I stay away from Facebook memories, especially this time of year. I don’t need them to remind me of how terrible things were. How much sickness and angst and worry and fear we were all going through. February through May are impossible. February is the anniversary of my father’s death. I remember how heartbroken Ariella was. We were on the way to her dance class when my aunt called to share the horrible news. I immediately turned the car around and went home where I told David and we all just held each other. Ariella was so close to her Pop-Pop. He played countless games of Candyland with her (and I don’t think he cheated with her like he did with me so I would win to end the games sooner) and silly games that she made up. He made the same dumb dad jokes he did with me, thrilled to have a new audience to appreciate them. She missed him when he was in Florida and asked to see him all the time when he was in town. She was devastated when he died. She felt guilty because she didn’t respond to his last text message. She frequently read it and did respond after he died, and she would often call his phone to leave a message on his voicemail telling him how much she loved and missed him.

February is the anniversary of Ariella’s diagnosis. I wanted to do something fun for the month of Valentine’s Day. Each morning before she woke up I was going to tape a heart on the door with a trait written on it that Ariella exhibited, such as funny, loving, generous, etc. I didn’t realize that by the 3rd day I would be writing traits such as strong, resilient, fierce, fighter, brave. Because even though we pretty much knew a day or so prior, February 3rd, after a full day of tests and exams, was the day we were told definitively “Ariella has cancer”.

February was the last month Ariella ever danced. It was the last month in 2017 she danced before her treatment started and after she eased back into it, it was the last month in 2019 that she ever danced. Ever.

February is the anniversary of Ariella’s bone marrow transplant, the beginning of the end, though of course we didn’t know that at the time. We were filled with hope, that this was the answer to keep those pesky cancer cells from returning. If only.

If you ask me how I am, I always say “I’m okay”, “hanging in there”, “taking it one day at a time.” I am hanging in and I am taking it day by day or sometimes hour by hour, minute by minutes. But though I may look and seem okay, I am not. I’ve just learned how to fake it, how to cover it up. We’re nearing three years without our girl and it doesn’t get easier, or it hasn’t yet for me. I still beg and plead to be taken early. I don’t feel the need to be here. Not only do I not fear death but I still would welcome it so I can be with Ariella and free from this constant, relentless ache. I still cannot fathom that this is my life. That I had a daughter. That I had a daughter with cancer. That I no longer have a living daughter. It doesn’t feel real and yet it feels all too real. It feels like a lifetime, it feels like a minute. Flashbacks to those days in the hospital, the truly horrible moments, make my heart pound and and my breath quicken, like I am physically there. Like I never left. Thinking about the happy moments make me smile and cry at the same time. Thinking of what we had and what we will never get to experience. What Ariella never got to experience. Thinking of her beautiful flame being extinguished way too soon. That we will never hear her infectious laugh or feel the warmth of her hugs. How could such a lively, exuberant girl be gone? It doesn’t seem possible. When I think of the many years I have ahead of me I feel physically sick. I don’t want to suffer through 40 more years. I don’t want to suffer for another minute. And yet somehow I do. Somehow it’s been 5 years from diagnosis, 3 years from bone marrow transplant and almost 3 years without her extraordinary soul here on Earth. This is not to say I haven’t had my moments of enjoyment and things to look forward to. I have. But they just aren’t enough.

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Running Towards Memories

On this frigid but beautiful sunny day, my marathon training took me to the BWI Airport bike path. As I was getting myself together to run 16 miles I was able to watch the sunrise and planes land. I don’t thank the weather app was right about the actual feel because it wasn’t windy. Though the temp was lower it felt better than last week’s long run, which was quite windy.

I have only been to this bike path once, with David and Ariella. We took her there to ride bikes. At the time we weren’t sure she could manage the more than 10-mile loop but she was a tough and fearless 8-year-old girl and did so with no problems. Though it has been almost 6 years since biking the path, I was running towards memories as I made my way around the loop. I remembered the horse we said hi too and then sitting on the bench nearby for a little break. Could one of the horses I saw today be the same one?

I remembered the long, steep hill she rode up without stopping, with not only David and me cheering her on but others on the path. Remembering Ariella’s strength going up that hill is how I got up that hill today. But of course remembering Ariella’s strength always is what gets me through tough times.

I remembered the nervousness I felt that she would crash into another person, or would fall when crossing an intersection. I remembered the wooden bridges and the overpass like it was yesterday. I remembered the relief that I felt when we completed the loop, making it unscathed. Had you asked me to describe the path before running today I would have vaguely mentioned a couple hills and horses. But while out there experiencing it once again it was as familiar to me as my own neighborhood. And it was both painful and beautiful. Because it felt like she was there with me, cheering me on like we had once cheered her on.

There’s not much to do but think when on long runs. My mind drifts but today Ariella was with me the entire way.