Author: stein28

Posted on

The Evolution of a Marathon

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

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

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

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

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

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

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

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

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

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

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

Posted on

Fuck You, Universe. Fuck. You.

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

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

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

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

Posted on

Shoes

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

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

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

Posted on

CureFest and More

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

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

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

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

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

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

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

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

Posted on

Southwest Hope and Healing Bereavement Retreat (Part 2)

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

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

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

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

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

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

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

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

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

Posted on

Grief Lives in Me

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

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

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

Posted on

Mother’s Day/Second Anniversary

It’s Mother’s Day and two years to the day I became a childless mother. What does it mean when my dear sweet girl, the one that made me a mother, the only one to whom I am a mother, dies? If she made me a mother and she is no longer living, no longer here to care for, am I still a mother? Yes of course I am still a mother. But I feel stuck in some kind of limbo. All the Mother’s Day ads and store promotions and displays and commercials don’t seem to consider the bereaved moms, the moms with no children (except for Home Depot; someone shared a picture in one of my support groups of Home Depot’s Mother’s Day display and they had flowers considering all. I’m also not forgetting those who are grieving their moms, this day is hard for them as well). I’m not the kind of mother these ads and displays are targeting. I have no child making me a handmade card and gift, or searching for the perfect item. Ariella was good at that. She made cards for no reason at all and was thoughtful with her gifts. The last gift she bought me, with her own money were matching mother/daughter necklaces. She was buried with hers and I am never without mine. Sometimes I feel like I need the reminder that I was a mother. That I AM a mother. Because it doesn’t feel like it.

I never put too much stock into holidays like Mother’s Day. It’s not like we ignored the day. Growing up we always did something as a family and once I became a mom that continued. I always did reserve time on Mother’s Day to do something with just Ariella or just the three of us, like getting pedicures, or going to the zoo, or such, but we also didn’t need a designated day to have our family time. Family time was very important to us and weekends, especially nice weekends would find us at some outing or another. So until recently, until I became a mom, one Mother’s Day wasn’t more memorable than the other. My first Mother’s Day of course I will always remember and then there are a few more that I will never forget.

Mother’s Day 2017. The first after Ariella was diagnosed. The first where I actually wondered if it would be my last with my beautiful daughter. We went as a family to the aquarium with my mother and David’s mother. We got the tickets through Casey Cares and were between treatment cycles. Ariella always loved the aquarium. And there is something so calming about watching those fish. Sinai Hospital, where she was treated, actually has an aquarium cam. There is a camera in one of the tanks so you can watch the fish from the TV in the hospital room. We had a blast searching the tanks trying to find the camera so we would know which fish we were watching during the next hospital stay. After that we went to a sandwich shop for some lunch. The weather was beautiful and it was so special to have such a lovely day in the midst of something so horrible.

Mother’s Day 2018. Oh but how hopeful we were. At that time Ariella was cancer free. We went to a Mother’s Day tea hosted by Casey Cares. We had food and made crafts, and even met some Ravens players. Ariella loved to wear hoodies and she always had her hood on. There was news coverage of the event and in the background there was Ariella working on her craft, with her hood on! I do not remember what we did after that tea but it is highly likely we went out for snowballs. On this day I most definitely wasn’t worried that it would be my last Mother’s Day with a living child. All I felt was joy and relief. Little did I know it actually would be the last.

Mother’s Day 2019. Was I even a mother anymore? This day I don’t remember because it was a blur of the days before and the days to come. Ariella had died three days earlier and we were burying her the next day. I was mostly numb. Isn’t that fascinating? How one can be numb but in colossal pain at the same time? The fact that it was Mother’s Day wasn’t even on my radar.

Mother’s Day 2021. The two year anniversary of the day I became a childless mother. The anticipation of these milestone/anniversary/holiday days is often worse than the actual day. Having these two days in one just increased my anxiety twofold. But on the other hand, I would only have to endure one day rather than two. In the end, I don’t really know if the days leading up were worse, or if having both on the same day was worse. I can’t, nor is there any reason to, quantify my anguish and heartache on really any given day. Some days are better, some are worse. Sometimes there is a reason for it, like a holiday or diagnosis day, or anniversary of death, and sometimes, though the pain and shadow of grief is there every day, the pain increases exponentially and crashes over me out of nowhere, like a tsunami, for no apparent reason other than I miss Ariella. And that of course is reason enough.

We have recently learned of the death of a friend’s son. You’d think I know what to say. But I don’t. Because I know the despair and desperation, torment and grief this family is living. And I know that nothing can make it better. And I know that it’s two years later and my grief still feels so raw and so new and I don’t want to put that burden on another grieving family. I can’t separate my pain from theirs, to give any semblance of hope that things will be okay. The truth is, it will never be okay. And no one has found the magical words that make things better. That doesn’t mean you say nothing. It means you say “I’m here”, “I’m listening”, “Tell me about your child”, “I’ll just sit here quietly next to you”. Or anything else that isn’t advice or some crappy platitude.

To the one that made me a mother, my dear sweet Ariella. The day you were born was the best day of my life and the day you died I had to learn a new way to be your Mommy. Not a day goes by that I don’t think about you. I still cry everyday, missing you, thinking about all the happy times and grieving all the moments we will never have. I will never forget your big, bright, smiles and your tight bear hugs. I miss those squeezes. I hear your giggle, and your evil laugh and am devastated that I won’t get to witness any more of your pranks (though the smoke detector going off at 1:00 AM, was that you?). You lit up the stage when you danced and you were a true leader who would have gone on to do great things. Who am I kidding? You already did great things. Your kindness and generosity, your ability to make friends wherever you went, and of course Ari’s Bears. I know that had you lived there would have been no stopping you. On this day, 731 days since you died, I want to share some of my favorite memories. There are too many to list them all, but of course not nearly enough. We were supposed to have a lifetime of memories. When you were little you had a funny way of saying some things, as all children do. You used to say “little billet” instead of little bit, “gulk” instead of milk, “man old man” instead of man oh man, “goofall” instead of goof ball, “what you said”. I sometimes say little billet even though it had been so long since you had said it. We had such great family moments; going to the beach and amusement parks, Disney World, California. I will never forget your fearlessness. How the bigger and scarier the ride, the better. How you raced down hills on your scooter and couldn’t go fast enough on Mr. Randy’s boat. How much you loved diving through the waves in the ocean. We had so many adventures. Fruit picking, going to the zoo and museums and the aquarium, girls trips to New York, dance competitions. But I loved more our quieter moments. Our family movie and game nights. Reading to you in bed and us quietly reading our own books together. Helping you with crafts. Just being in the same space as you. It is so quiet without you. I still haven’t gotten used to the silence. Noise and joy and laughter and yelling and exuberance were your essence. I still cannot fathom how someone so filled with life and enthusiasm can just be gone. But as I’ve told you many times, life just isn’t fair and sometimes we have to figure out how to live without the ones that make us whole. I still haven’t figured out how to live without you, but somehow I’m doing it. I’m still breathing despite the pain I feel with every breath. Dearest Ariella, the world is a less bright place without you in it. Your flame was extinguished way too soon and I will do everything I can to keep your legacy alive. I miss you more than you can possibly know and I have a hole in my heart that can never be filled. I love you to the moon and back, infinity times. Love, Mommy

731 days without my sweet girl. It doesn’t seem possible. And yet here we are. This second year was harder than the first. Year three is now ahead of us. Just two years down with a lifetime to go. Still doesn’t seem survivable.

Posted on

Adapting

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.

Posted on

It’s Been a While…

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.

Posted on

How do you Find Meaning when your Only Child Dies?

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.