grief - Living with Grief

October 16, 2023

A Song

A song. One single song. Can cause me to become undone and completely derail my day. Without fail “Fight Song” has this affect on me. No matter where I am or what I am doing, when I hear that song my eyes immediately tear up, I start shaking, I get a lump in my throat, a pit in my stomach. I find it hard to breathe and every part of me just wants to flee. Sometimes I can prevent the tears from escaping, but not often. They sneakily push their way out, drawing salty lines down my cheek, making it impossible for me to pretend like everything’s okay. “Fight Song” became Ariella’s anthem during treatment. She sang it frequently and even recorded the song in a professional studio. “Fight Song” was synonymous with Ariella. “Fight Song” was playing as Ariella took her last breaths. “Fight Song” Ariella’s version was played at her funeral. This song will never not be tied to Ariella and her spirit and sass and spunk and resilience. It brings me back to our house, out front, on a beautiful day when she was using her phone to record herself singing it. It brings me back to that recording studio and the pure joy on Ariella’s face while she was singing, which was just a small part of a much bigger day celebrating her end of treatment. It brings me back to the harrowing moment in the hospital room when her soul left her body while David and I were holding her. And it brings me back to her funeral. Hundreds of people and the only sounds you could hear were Ariella’s sweet voice and the sobs of her loved ones.

As counterintuitive as this may sound, I have “Fight Song” on some of my running playlists. Because while it has the affect on me that I explained above, it never fails to remind me of how Ariella never let cancer stop her. I typically do not prefer using words like “fighting” or “fighter” or “warrior” or “battle” when describing those diagnosed with cancer. It implies that if you fight hard enough, you will survive. That there is some choice in the matter. Ariella didn’t fight cancer. Her toxic chemo tried to fight the cancer. But Ariella lived her best life despite cancer. She gave cancer a giant FU by continuing to live joyfully, by participating in her activities, by continuing to dance, and by spending time with her friends. And this song motivates me to do the same in hard times. And it’s perfect for running. Because when the run gets hard this song reminds me that Ariella endured so much worse so I can certainly endure a tough run. The other day I had a long run in the rain. And towards the end “Fight Song” began playing. And it was glorious. The rain mixing with my tears, no one around, and I could cry with abandon. Rain and tears both cleansing my soul, and I felt such a release and sense of renewal following that run.

Trauma. It follows you, clings tightly, and will not release its grip. Trauma is sneaky. Because as time goes on you think its hold on you has lessened. You breathe more easily, you start living again. You smile and laugh more and think you just might one day be okay. But the landmines are still there. They are further apart which makes them more dangerous. Because you are less cautious, less prepared for when you step on one so it catches you off guard. And the explosion hits and completely takes you down. And you have to claw your way out of a deep, dark hole to recover. Sometimes it’s a bit easier to dig your way out but other times, when you find something to hold onto as you drag your way up, you hit another landmine and another part of the wall comes crashing down, bringing you back down with it. These past few weeks have been like that for me. I celebrated Ariella’s heavenly 16th birthday, my Dad’s heavenly 80th birthday, someone I know was killed by a drunk driver, I’ve learned of kids relapsing with cancer and others that are not doing well with their treatments. Israel is being attacked and it’s a scary and uncertain time to be Jewish even here in the US. There’s more but that’s not for me to share here. I didn’t think it was possible but my heart continues to break and it’s getting harder and harder to put the pieces back together. Inevitably each time it breaks pieces get lost. With the death of Ariella I knew my heart would never be whole again, and the hole she left behind keeps growing.

All this to say you never know what someone is going through. People wear masks, pretend like everything is fine when inside they are barely hanging on. But then they step on one of those landmines. And they drop the façade. Maybe they just heard their own trigger song, reminding them of a loved one they lost. Maybe they were grocery shopping and passed the cereal aisle with that giant box of sugary goodness that was a favorite of their child that has died. Maybe they stumbled upon their person’s favorite place, evoking bittersweet memories. I know that when I hear “Fight Song” my mood can change instantly. However sometimes it is for the better. I always cry when I hear the song, but sometimes I smile too.

May 22, 2023May 22, 2023

Anniversaries, Mother’s Day, Signs…

Another Mother’s Day. The 5th without my daughter. We buried her the day after Mother’s Day in 2019. I do everything in my power to avoid this day. After all, I am a childless mother. There is no word for that. When I’m asked do I have children I don’t know how to answer. Really just depends on the day, the moment, the person. I am a mother but I am not mothering. No more handmade cards, no more special mother-daughter outings, no more thoughtful gifts. Ariella was good at that. And now I hide. I try to protect my heart, spare myself from the jealousy and bitterness I feel with the constant bombardment of the pictures, the perfect families, the mom messages, the special days. But it doesn’t work. There is no hiding. The grief finds you, it takes hold, it wraps its tentacles around you and squeezes you until you can’t breathe.

Grief doesn’t go away, you learn to live with it and it becomes a part of you. In some cases grief has just made me “more”. More anxious, more introverted, more quiet, more solitary AND more empathetic because you truly never know what someone is going through. AND it also has changed me at the core. It has made me cynical, pessimistic, jealous, resentful, and bitter. Traits I never used to carry.

Right before Mother’s Day was the 4th anniversary of Ariella’s death. Our rabbi used to talk about the first year, how we would get through the firsts of everything, the first birthday, the first holiday, the first death anniversary, etc. like that would be the hardest, like once we got through that it would be easier. Or maybe not that it would be easier, but that we would learn that we could survive it. The truth is in many ways each year feels harder. We get further away from Ariella, further away from being able to picture clearly her face, hear the sound of her voice, feel the weight of her arms around us. That first year we were surrounded by people, everyone remembered, and on those hard days there was no shortage of people to turn to. People expected us to be sad, understood it, and didn’t try to fix it. As the years pass others move on and can’t grasp the extent that we still hurt (nor would we want them to) even though we smile and have fun and have started living again. Some still reach out on those hard days but not as many, and it happens much less now throughout the year. I get it. I do. But it gets lonely. It feels like we are stranded on this little island with no way off and relief coming only periodically, when the conditions allow. Sometimes the island is calm, the seas are smooth like glass and you feel safe. You’re still trapped and there is nowhere to go, but for a moment you are okay. Then a storm rolls through. Sometimes it’s forewarned and you can prepare yourself and sometimes you are completely blindsided. The waves come crashing, the wind is howling, the island is under water, and you feel like you are going to drown or get knocked out by a falling tree. You try to find a cave or shelter in which to curl up and hide until the worst passes. Eventually though the waters do recede and the winds subside. Overtime there are fewer storms and more periods of calm. The grief gets carried differently but the pain is always there. It’s just now there is room for some I can’t say happiness but I guess enjoyment and purpose alongside.

I do have to share a recent sign I got, mostly so I have a record of it. I like to ask Ariella for obscure signs as it’s harder to wave them off as mere coincidence. A few weeks ago the song “It’s so Hard to Say Goodbye To Yesterday” by Boys II Men very randomly (considering it’s from the early 90s) popped into my head. I cannot tell you the last time I heard it but I distinctly remember hearing it playing at the ice rink when I was in high school, right after my friend died. The lyrics hit so hard at that time and thinking of the song brought me back to that moment. So anyway, for whatever reason I thought of that song and asked for the song, or anything Boys II Men as a sign. What were the odds it would actually happen? I thought slim to none. When I was at PT on May 9, the anniversary of Ariella’s death, the song “One Sweet Day” (also random since that song is from 1995) by Mariah Carey came on. Similar sentiment to what I was looking for but not quite what I asked for (or so I thought). Exactly one week later, at PT again, “One Sweet Day” came on again but this time I was paying attention to the male part because clearly something or someone was trying to make me pay attention to this old song. I always knew the song as a Mariah Carey song and didn’t know who she sang with so looked it up and was surprised/not surprised to see it was Boys II Men. So there you have it. Another unlikely sign, two weeks in a row because I ignored it the first time.

“It’s So Hard to Say Goodbye To Yesterday” by Boys II Men (originally by G.C. Cameron)

How do I say goodbye to what we had?
The good times that made us laugh
Outweigh the bad

… I thought we’d get to see forever
But forever’s gone away
It’s so hard to say goodbye to yesterday

… I don’t know where this road
Is going to lead
All I know is where we’ve been
And what we’ve been through

… And if we get to see tomorrow
I hope it’s worth all the wait
It’s hard to say goodbye to yesterday

… And I’ll take with me the memories
To be my sunshine after the rain
It’s so hard to say goodbye to yesterday

… And I’ll take with me the memories
To be my sunshine after the rain
It’s so hard to say goodbye to yesterday

“One Sweet Day” by Mariah Carey and Boys II Men

Sorry I’ve never told you
All I wanted to say
And now it’s too late to hold you
‘Cause you’ve flown away, so far away

Never had I imagined
Living without your smile
Feeling and knowing you hear me
It keeps me alive, alive

And I know you’re shining down on me from Heaven
Like so many friends we’ve lost along the way
And I know eventually we’ll be together (Together)
One sweet day
(And I’ll wait patiently to see you in heaven)

Darling, I never showed you (No, no, no, no)
Assumed you’d always be there (Always there)
I thought you’d always be there
I, I took your presence for granted
But I always cared (But I always cared)
And I miss the love we shared (Yeah, and I know)

And I know you’re shining down on me from Heaven
Like so many friends we’ve lost along the way (Lost along the way)
And I know eventually we’ll be together (Oh, no, I know)
One sweet day
(And I’ll wait patiently to see you in heaven)

(Although the sun will never shine the same again)
(I’ll always look to a brighter day) Yeah, yeah
Lord, I know when I lay me down to sleep
You will always listen as I pray

And I know you’re shining down on me from Heaven
Like so many friends we’ve lost along the way
And I know eventually we’ll be together
One sweet day (One sweet day)
And I know you’re shining down on me from Heaven
Like so many friends we’ve lost along the way
And I know eventually we’ll be together (Yes, we will)
(One sweet day) One sweet day

Sorry, I never told you
All I wanted to say

May 1, 2023

Memories

This time of year, from March through May, I am flooded with memories. Memories that are in direct contradiction to each other, memories that have completely different emotions to them. Back in March 2017 Ariella had just begun her treatment. Our days were awful, our lives put on hold. We were scared and sad and feeling helpless. And we had so much hope. Less than a year and she would beat this thing. We could get through a year and then we would be back to normal. Her prognosis was good. In between hospital visits, when Ariella was in between treatments, those brief periods when she was feeling well, we could live our lives. We had a lot of fun. We even had fun times in the hospital. We had some terrible, terrible times in those early days, especially just trying to figure out this new life, adjusting to our new normal but I never felt completely defeated. Honestly I followed Ariella’s lead. I can’t say she never complained but she mostly had a great attitude. She never doubted she would get better and she cared more about comforting other children. And I would do anything to go back there. For better or worse those hospital rooms were our second home. We knew the doctors, nurses, child life staff and volunteers. We got to know other families. We decorated the rooms and brought comforts from home. Even when times were better, when Ariella finished her treatment, I missed those days. We had fun but there was also a sense of safety. While Ariella was there, we were fighting the cancer, keeping it at bay. Once we were out of those rooms we were doing nothing to stop it from coming back.

In March 2019 everything had changed. The promise of a cure from a bone marrow transplant quickly vanished when Ariella had to be admitted to the ICU, and then a week later was intubated. Of course we still held onto hope because without hope, you just can’t continue living. But I knew, I just knew if she was intubated she was not going to come off life support. I tried not to despair. We had some steps forward. But ultimately with each step forward there were larger steps backwards. As the weeks went on I lost more and more hope and began to fear more and more that we would lose her. Days and nights were spent staring at her vitals, listening to the beeps. We were terrified and exhausted and completely helpless. Ariella would have a great day here or there which inevitably would be followed by another setback. There was nothing fun about those days, just constant vigilance. I do not look back at those days with any sort of fondness. Even when Ariella’s room was overflowing her last day, visitors spilling out into the hallway, waiting to say their goodbyes. I’m glad people got to say their goodbyes. But following those moments I have to remember the machine being turned down, step-by-step until it was no longer keeping her alive, hearing Ariella take her last breaths, and feeling her leave us.

With the calendar having turned over to May I’m not filled with the sense of renewal that the promise of spring and warmer weather often brings, but instead filled with dread about facing the anniversary of the day Ariella died. Remembering those awful days leading us to making that impossible decision. Leaving the hospital without our girl after spending over 2 1/2 months there just hoping we would be leaving as a family, only coming back for check-ups. We went into the hospital on February 19, 2019, one week before her transplant, filled with hope and excitement, ready to celebrate her re-birthday. We left the hospital May 9, 2019 as a broken family of two with a hole that can never be filled.

October 3, 2022

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

September 30, 2022

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.

September 8, 2022

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.

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!

June 2, 2022

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…

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!

May 9, 2022May 9, 2022

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.

April 19, 2022

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.

February 5, 2022

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.