Month: August 2019

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Back to School

Here we go. The back to school ads are everywhere. School supplies, clothes, uniforms. Parents celebrating that the summer is over, the kids are finally getting out of the house. The parents lamenting that their kids are growing so fast. They wish time would slow down. They don’t want their children to grow up. Be careful what you wish for. My child never got the chance to grow up.

The first day of school posts have been here for weeks now. I try to avoid the posts. I don’t do much on Facebook. I post updates of course about Ari’s Bears, maybe share some articles, but mostly stay on social media to keep up with the children I follow. The other posts hurt too damn much. In all honesty, even the posts about the children with cancer hurt because they are still alive. They have hope. In many cases the posts are about celebrating remission, end of treatment, ringing the bell. And many of those kids are starting school and engaging in typical childhood activities. But I worry about them. I want those kids to be cured. I want them to survive. I know them, I know their families and it is important to me to know how they are doing.

So of course I inevitably start scrolling through my feed. Usually at the top of my feed are the bereavement groups I’m in and pages I follow. But then the regular posts come. They are in my face showing me everything I am missing. The happy, intact families on vacation. The children at a dance competition. The parents attending various events for their children. The parents upset because their kids are growing too fast. The parents missing their kids who are at camp. Parents crying about their empty nest now that kids are heading to college. Each post another punch in the gut, a knife through my heart, a slap in the face. I quickly shut it down, tears streaming down my cheeks, wanting to throw up. And now the first day of school pictures. I will never have another first day of school picture of Ariella. I will never again see her standing in front of our house with her book bag on her shoulders, smiling so big because she loved school. I will never again have someone to help with homework and projects. I did not enjoy helping with projects. There was lots of yelling and complaining. Papers slammed down, pencils thrown. But I would give anything to have another project, another math sheet, another book report.

I never again get to share in the anticipation of the first day of school. Hearing about the classmates and teachers. Which friends are in the same class. Which electives will be selected. I never get to have another first day of school picture. No more comparing how much Ariella grew from the previous year. No more pictures at all. So I will share all the first day of school pictures I was blessed to have. I had to dig deep to find some of them because I did not always post them on Facebook and I don’t keep all my pictures on my phone (I have them all printed). I figured it wasn’t anything special. Every child has a first day of school, why do we need to share all the pictures? Little did I know. It never occurred to me that we would not get to have first day of school pictures through 12th grade. It never occurred to me that Ariella’s life would be cut short, that her school memories album would end in the the middle of 6th grade. I never imagined that I would be so desperate to find her first day of school pictures because they are all I have now.

  • 1st day of preschool (2s)
  • 1st day of preschool (3s)
  • 1st day of preschool (4s)
  • 1st day of Kindergarten
  • 1st day of 1st Grade
  • 1st day of 2nd grade
  • 1st day of 3rd grade
  • 1st day of 4th grade
  • 1st day of 5th grade (in January when she returned to school after treatment)
  • 1st day of 6th grade

The pictures should not end there. We should get six more first day of school pictures. We should get a going off to college picture. This should not be it. How? How did this happen? Why did this happen? How could this beautiful life be cut so short? She had so much more to do, so much more to give. Look at that face. Pure joy and excitement. And that was a chemo week for her. Chemo wasn’t going to keep her from school. How can anyone look at this child and think this would be her last first day of school? That in less than 10 months, this child, this beautiful child with so much hope and potential would be dead? I still can’t fathom it. That this beautiful, dancing flame was extinguished. That this brilliant spark of light no longer shines. She was supposed to survive.

Today should be Ariella’s first day of 7th grade. But instead we have empty steps in front of the house, an unused book bag hanging by the door, unfulfilled dreams, milestones that will never be reached. This last picture was a new beginning for Ariella. A new school. Middle school. A private school where most of the kids had known each other for years. But that didn’t daunt Ariella. She jumped right in and made new friends almost immediately. A wonderful, supportive group of friends. To them she wasn’t the kid with cancer. She was just weird, loud, goofy, and outgoing Ariella. She very quickly planned get togethers and sleep overs. Her entry into this new school was seamless. The world was hers for the taking. She had so much promise. How did everything go so fucking wrong?

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Back to Work

First I just want to express my appreciation for all the kind messages and well wishes I received this week. I do appreciate the messages, even if I don’t respond. It’s hard to respond to those because I never used to be a person who needed taking care of. I don’t necessarily like being taken care of, even if it’s something I may need. I don’t like being the person that needs taking care of. I just want to be me. Nothing special, no extra attention. But on the other hand, the attention reminds me that I have all the support I could want.

Being back at work just outright sucks. I hate it. I work in multiple schools so there is plenty of staff in each school that I only know by sight. They know nothing else about me. The first person I saw when I walked into work on Tuesday was a teacher I just know from passing in the halls. She asked me if I had a great summer. What the fuck do I say to that? Do I say “my daughter died sooo…”? Do I lie and say it was great? I just said it was okay. And this is my issue with working. Some people know, some don’t but that doesn’t even matter. What matters is that I have to compartmentalize my life now. I have to go to a job every day and act like everything is okay. Act like I am anything but the shattered, broken shell of my former self. I have to participate in life and it is fucking exhausting. And it is painful.

Being privy to others’ conversations is just as difficult. Many talk about their kids, what they are doing, etc. I can’t join in those conversations unless I want to be a complete downer. Conversations not about kids don’t appeal to me either. It all seems so trivial and petty and I just can’t bring myself to give a shit. But those who don’t know my situation may just think I’m unfriendly.

Being back at work feels to me like I am “moving on”, living life, doing normal every day things. It feels so unimportant and meaningless to me. My daughter died. How can I care about anything else? How can I switch my focus from what’s most important to me? I can’t. All day at work running through my mind is “My daughter is dead. None of this matters.” There is nothing more important than Ariella and yet the world keeps spinning, the pages of the calendar keep turning, and life goes on. But I don’t want it to. I am not ready for life to go on. I don’t feel right doing these everyday, normal things and all I want to do is be at home, in my safe place, hiding from the world.

I cry everyday, multiple times a day. I never know when it will hit me. The tsunamis of grief come when they want. I can’t schedule them to drown me at my convenience. It takes all my energy to not allow them to overcome me at an inopportune time. What’s going to happen when the students return next week? Some of them know I have a daughter. They didn’t know she was sick or in the hospital but what happens if they ask about her or mention her? I need to be able to hold back the tears when I am with the kids. I just don’t know that I can do it.

I have found many things bereaved parents have in common but I think there is a split when it comes to work. Some, like David, have found work to be helpful. They welcome the distraction. They are relieved to be kept busy, so they can push the grief aside. I am the complete opposite. I am not distracted and all I am doing is counting the minutes until I can go home. The grief keeps asking me “Why are you doing this? What is the point?” And the truth is while I used to love my job I am only working now because I have to. Because I don’t see the point. Nothing else matters to me except that I had a daughter and she died.

Coming home from work is no easy feat either. There is no one to pick up from school on the way home. There is no rushing around trying to get to dance or get homework done and dinner on the table. There are hours to fill after work. And yes, without work I would have more hours of the day to kill but what is hard is the transition of coming home to that empty house without our regular after work and evening routine.

I really don’t want to do this. Before going back to work I was surviving. I don’t know how I am going to survive this. Life just feels that much more stressful and overwhelming. And all I want to do is cocoon myself in a blanket to never emerge.

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Not Strong

“You are so strong.” “You are inspiring.” “I don’t know how you do it.” “I wouldn’t be able to go on if my child died.” These are statements often heard by bereaved parents. And I hate them. I am not strong. Well, no stronger than anyone else. Burying a child does not automatically make one stronger. I go on every day because I have no other choice. Living each day without my child does not make me strong. I am living against my will, I did not make the choice to do so. My heart continues to pump, my lungs continue to breathe. My will has nothing to do with it. I don’t want to be admired. I am not someone to aspire to live up to. I am just here, trying to survive each day. Those who say they could not go on if their child died. Well tell, me what would you do about it? Because short of suicide you too would not have a choice in the matter. Don’t get me wrong. Suicidal thoughts are extremely common in the bereaved parent community. Not necessarily ideations, but wishing they were dead. Wishing they would go to sleep and not wake up. Wishing for a terminal illness, aneurysm, freak accident, anything to escape this life. I cannot speak for all bereaved parents but I do know many, many that would welcome death.

I am not strong. I go through the motions. I do what I have to do. I haven’t worked since Ariella died in May. I was fortunate to be able to take off the rest of the school year. Tomorrow I go back. Maybe some think that makes me strong. But it doesn’t. I don’t want to go back. Going back to work feels like I’m moving on with my life. That there are things out there more important than Ariella. But I’m not going back to move forward. I’m going back to work because again I have no choice. Bills have to be paid. Food has to be bought. I work in 5 different schools. That is going to be like 5 first days back at work, plus my orientation day. The thought of this terrifies me. Because I am not strong. Because I cannot hold back my tears. Because all I want to do is be at home with minimal interaction with the outside world.

I am already exhausted and overwhelmed. Everything just feels wrong. My whole life feels wrong now. I don’t know where I belong now, where I fit in. And I have no desire to figure it out. I don’t want to find new roles and identities. All I want is my job as Mom and I can’t have that.

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Grief is Everywhere

Grief is everywhere. It’s there as soon as I wake up in the morning, facing yet another day without my favorite person, the one that is and always will be a part of me.  When I look at the clock and wonder why I should get out of bed that day. What is the point? I have no purpose anymore. Nothing to live for. The one person that needed me. That truly needed me, is gone.  I have no one to take care of anymore.

Grief is there when I am walking my dog.  She should be walking the dog with me. Grief is in the rocks she would have collected, the pictures she would have taken of the flowers or the sky or the deer we sometimes see, and in the bugs she would have screamed about and run away from.  

Grief is there when I force myself to run or go to the gym.  It’s in the songs that are played that make me think of her, whether it’s the lyrics, a particularly meaningful song, or just a song she liked.  It’s when I take an exercise class I think she would enjoy. It’s when I think about being uncomfortable when exercising and then remember all the pain (physical and emotional) and discomfort that she tolerated and realize my exercise is nothing compared to that.  It’s when I then push myself even harder, almost to my breaking point, almost like a punishment.  

Grief is there when I am in the shower.  Nothing else to distract me, just thinking about my girl.  The thoughts vary but they are always about Ariella. Memories we have and memories we will never get to make.  I think about everything I am missing.  

Grief is there when I am in my car.  Again in the songs I hear. Listening to the talk radio show that we listened to whenever she had morning appointments.  Seeing the picturesque sunrises on the way to those morning appointments, maybe even pulling over so she could take a picture.  Remembering all the times I drove her to appointments. Remembering picking her up from school and then racing to the dance studio. Missing the silly things she did in the car; taking video of me driving, singing made up songs, sticking her head out the window, playing “sweet and sour” (waving to people in other cars and seeing who smiled or waved back), messing with the radio.  Mostly missing all the conversations we had in the car.  

Grief is there when I go to the grocery store.  Seeing the bear that is hidden in Trader Joe’s for children to find.  That was always her mission when going to the store, to find the bear.  And more recently she enjoyed having her own list of items to shop for. Grief is in all the food I no longer need to buy.  Cheese sticks and the yogurt she liked, granola bars, the snacks she liked. Every aisle a reminder of who is missing. Grief is seeing the employees who knew Ariella from a toddler. Who announced her birthday over the intercom and gave her flowers (before she was ever sick).  Who supported her and us throughout her illness and continue to support us now. They even sent us a Trader Joe’s bear and made a donation to our foundation. Trader Joe’s was actually the hardest place to return to after Ariella died because we know the staff there and until more recently was a place Ariella always went to with us (as she got older she often chose to stay home rather than shop with us).  But grief is not just at Trader Joe’s, it’s at any grocery store. In her favorite foods, in the toy aisle when she would beg for the crappy items, in the whining that it was taking so long. And grief is in the possibility that I will run into someone I know, and have to make small talk or talk about how I am doing.  

Grief is there when I watch TV.  In the commercial jingles that she would sing along to (“We are Farmers..”, Liberty, 1-800-Contacts, etc.).  In the shows we don’t get to watch together. I actually don’t watch much TV anymore. It just all seems so meaningless to me.  I mainly have HGTV on, often just for the background noise. But she would love some of those shows on there. The grief is in not being able to talk about those shows with her. It’s in not being able to watch the newest season of Stranger Things because she loved that show and was looking forward to binge watching this season with her cousin through FaceTime, who lives across the country. I can’t watch it without her. Without being able to discuss it with her.  It’s in never finishing even one season of Gilmore Girls with her. We started watching together when she was in the hospital.  

Grief is there when I am cooking dinner.  It’s in cooking for two, not three. It’s in not hearing her complain about setting the table and in not being asked for help with homework while I’m trying to cook.  Grief is missing her excitement when I was cooking her favorite foods. Grief is missing her potty mouth at dinner (I never could win that battle as it was her father and her against me) and her dumb jokes.  It’s the empty place at the table.  

Grief is there when I am with my friends.  It’s knowing their families are intact and mine isn’t.  It’s knowing their children are doing things Ariella should be doing along with them.  It’s knowing that the younger children will soon surpass Ariella. It’s in hearing about their children when all I can share about my child is memories.  

Grief is even in activities I find therapeutic.  In painting pottery or doing a canvas paint night.  I have found those activities soothing and yet grief is ever present.  Those are activities Ariella and I often did together. Even in the few months after Ariella was born I took her to a pottery painting place to paint her footprint on pottery pieces.  I see all the objects Ariella would want to paint. I remember all the times I took her to the kids canvas painting workshops. She loved those activities. We will never get to share them again.

Grief is there when I am settling down for the night. It’s in not having to pack Ariella a lunch for the next day. It’s in not having to check homework and then persuade her to get in the shower. It’s in not watching TV together before bed and in not reading together. It’s in not having her give me her special stuffed animal when I’m not feeling well and in not being asked for a back scratch. It’s in all the empty time I have to fill. Time that once seemed so hectic and busy but what made my life meaningful. Grief is in trying to fill all that time until it’s a reasonable time for me to go to sleep.

Grief is everywhere.  It’s in the conversations I hear around me.  “How are your kids?” “What grade are they going into?”  “Do they play any sports?” “My kid is so excited for…” “My summer was great.  How was yours?” It’s in a beautiful day I can’t share with my daughter. It’s in a funny story I can’t tell her.  It’s in the cute animal picture I can’t show her and in the funny video she can’t watch. It’s in every day, routine tasks because she is missing from them.  I was actively parenting and now I’m not. When your role shifts so dramatically there is no escaping the grief. Parenting was my life and now I’m lost. I’m missing Ariella immensely and along with that I am missing my identity, my most important role, and all the future moments we will never get to have.  I am not only grieving the loss of Ariella but also all the future milestones never to be reached, the unfulfilled plans and dreams. Every moment is touched with grief.

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Kindness

Running through my neighborhood I run past bikes strewn across lawns, kids running through sprinklers, scooters left haphazardly on the sidewalks, pictures drawn from chalk. A family packing up the car for vacation, two parents and two children. All evidence of the happy lives going on behind the front doors. But is it really?

You never know what’s going on behind those closed doors. Who is using those bikes? Should there be one more? Is the picture drawn by a child who is sick and cannot join in the more physical activities? One parent is supervising. Is the other parent inside, or is it something more sinister? What we see is just a tiny glimpse of someone’s life and we shouldn’t even begin to guess at the reality. What do people think when they see me? I probably look fine to others when I am out running. Maybe they think “good for her, she’s taking care of herself by running. She cares about her health.” Or when we are out walking our dog, talking with each other. Do they think “what a nice, happy couple walking their dog and enjoying their time together?” We go on with our daily routines which makes it appear that we are typical people just going about our lives. Rarely can others see what’s below the surface unless we show them. At our house there are no toys or bikes outside but a stranger happening past wouldn’t think anything of it. They might see our dog and cat looking out the door and think that a home with pets is a happy home. There is no evidence that I am broken. No evidence that behind the walls of our well taken care of home is unfettered grief and heartbreak. Even in public, though I feel like a shell of my former self, others may look at me and think I look unhappy but they certainly would not see the extent of my anguish (unless I am crying, which does happen quite a bit).

Even when Ariella was in treatment a bystander observing our family wouldn’t think anything was wrong (unless Ariella was showing off her bald head). We had fun, Ariella played outside, we looked just like any other happy family. We wore good masks. The worry and fear wasn’t evident. We looked carefree, like we had it all, when in reality we were facing our worst nightmare.

The point of this is that you never know what someone is dealing with. My temper is short these days. I rarely smile, and have no desire to make small talk. Strangers may take that as rudeness. But I can’t help it. But when someone shows kindness, by a compliment, or just with pleasant greeting, etc., it can offer a little brightness to someone who just may need it.

I have experienced a lot of kindness from strangers recently, even when I feel like I don’t deserve it. Here is an example. Well this man is not a complete stranger. He lives in our neighborhood and (I’m saying this in a joking way) accidentally traumatized Ariella one Halloween. I think it was her fourth Halloween so she would have just turned three a few weeks prior. She was a pirate. When we got to his house for trick or treating he opened the door but remained hidden by the wall. After a few seconds he jumped out wearing a gorilla mask and loudly roared. Well that scared the shit out of Ariella. She jumped, screamed, cried, and ran away, knocking off her bandana. For the longest time after that she wouldn’t walk past the house and would frequently talk about the “Gorilla House”. She even remembered that her bandana came off. She eventually outgrew her fear of the house and even trick or treated there, but she never forgot that one night.

I’m telling this story because we never knew this man personally. Trick or treating was our only encounter with him during all the 12 years we’ve lived here. And then Ariella died and he came to the Shiva house (I don’t know if he was at the funeral). I’m not sure how he knew our situation but I think he knows David’s mom (everyone knows David’s mom so it’s a good bet that’s the connection, and I’m pretty sure that’s what David told me). It took a minute before I realized who he was but then I joked with him that he was the one that traumatized Ariella years before. I hadn’t seen him since the Shiva but the other day when I was walking the dog he was sitting outside on his deck and saw me walking by. He made it a point to check in with me and sincerely said I could let him know if there was anything he could do. I didn’t even see him at first, he called my name to get my attention. He could have ignored me. Who wants to talk to a grieving mother you barely know? I truly was touched.

The number of people that followed and continue to follow Ariella’s story astounds me. Many, many strangers invested their thoughts and prayers and energy into Ariella. Following a child with cancer is no easy feat. While at times it can be quite uplifting it is often emotionally draining. Strangers get to know those kids, care about those kids, and too often the children do not survive. And yet these people we have never met followed her to her last day and continue to follow her legacy through Ari’s Bears. Strangers sent Ariella cards and gifts when she was in the hospital. They have sent us bears and donated to Ari’s Bears. They comment here, let me know I am not alone. Many who live local to me, whom I have never met in person, have offered real, tangible help (for example grocery shopping for us). In a world where it’s so easy to focus on the bad, we need to remember there are truly, kind people.

Acquaintances and strangers that go the extra mile when clearly they do not have to helps get me through. They remind me there is good in the world, that people are generally caring, that there is some lightness in the dark. We would expect this from our family and close friends and we have mostly gotten it (though for the record, a comment on a facebook post here and there does not equal support) but ever since Ariella was diagnosed I was surprised and pleased at support we received from people we had never met. Many of them have become our family. Especially the cancer families. The pediatric cancer world is supportive by nature. Though the families are each fighting their own horrific battles they still take their time and energy to support other families. And then when the unfathomable happens the bereaved parents community reaches out. Again, these parents are in a never ending state of grief and yet they want to support others who are going through the same thing. The pediatric cancer and bereaved parents worlds are the most supportive, caring clubs that we never wanted to join.

So again, you never know what someone else is dealing with. You don’t know what’s behind that smile, behind those doors, beyond the surface. Everyone is going through something. No one’s life is perfect and a little bit of kindness goes a hell of a long way. An act of kindness may make a huge impact on someone, even if you don’t see it right away. Even if someone is not kind to you, be the person who will show them some kindness. They just might be the ones who need it the most.

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Iced Chai Latte

I can’t. I just can’t anymore. I just wanted a fucking iced chai latte and that was too hard. Trying not to cry all day long but every fucking thing is a reminder. Drove someone to an appointment at the hospital where Ariella was born. The best day of my life. Never in a million years would I have imagined that less than 12 years from that day she would no longer be here. She was perfect and healthy at birth, even though she was born by c-section. She was rarely sick and I couldn’t imagine that I would only get to be a mom for 11 1/2 years. And don’t tell me I will always be her mom. It’s not the fucking same. I don’t get to see her grow up. I don’t get to teach her to drive. I don’t get to hear about boys and take her shopping for a prom dress. I don’t get to send her off to college and help her plan a wedding. I don’t get to brush her hair and tuck her in at night. I don’t get to hug and kiss her. I don’t get to cook her dinner, pack her lunches, share sushi with her, watch her dance. I don’t get to read to her, read the stories she wrote, receive the cards she always made. I don’t get to help her with her homework, take her to musicals, take her on vacation. I don’t get to see how she would have turned out. I don’t get to see the amazing adult she would have become. I don’t get to continue the amazing mother-daughter relationship we had. I don’t get to have grandchildren. I don’t get to just be with her, every day. I lost everything. I am missing out on everything. And I feel guilty about it because I should be sad for her, for her life being cut so short but I am sad for me, for all I’ve lost and all I will never have. And yet I am wasting this life I have. Maybe I should try to enjoy life, go on living because she can’t. It seems wrong to not “live” when all she wanted to do was live. But it also seems wrong to live when she can’t. When she deserved it. Why should I get to live when she can’t?

The second appointment of the day was at an imaging center. The same center where Ariella had her follow up x-rays. I will never forget the anxiety walking into that place. My heart pounding, adrenaline pumping. Literally shaking. And that feeling would linger until we got the results. It was an x-ray done at this place that showed her relapse. While waiting there I tried to distract myself. I read and watched a show on my phone. But my thoughts always went back to all the times I was there with Ariella. And the tears would start.

It had been an especially rough few days. I just wanted my iced chai before heading home after a long day. In the parking lot. A Baltimore Symphony Orchestra bumper sticker. Reminded me of watching the BSO perform Peter and the Wolf at Hopkins when Ariella was there for her BMT. She was feeling so good. I just don’t understand what fucking happened. And I just want to go back and change the variable that made everything go to shit. Remembering the good times, remembering the bad, makes no difference. It all leads to my child dying. Sometimes remembering the good is harder because it only reminds me that this never should have happened. Cancer didn’t kill her. It was a perfect fucking storm of everything that could go wrong with the treatment. So the good times, even in the hospital because there were some, just serve to show how naive our optimism was. How we should never have done the transplant. Because that transplant took the life of the girl in the hospital who was just days prior dancing in the hallways, silly stringing her teacher in her hospital room and pranking her nurse with a scary clown mask. She wasn’t sick. She didn’t look sick. She didn’t act sick. But still she died. It’s not fucking fair.

All of that from a bumper sticker. But I wanted my chai and after navigating probably the world’s most awful parking lot I couldn’t leave empty handed. So I composed myself and went in to get my drink . But right there in front of me in line, a girl about Ariella’s age, with her mother. They were joking with each other. Laughing. Ariella could always make me laugh. Even when I was angry with her. Sometimes I had to hide my laughing because she did or said something she shouldn’t have that I found funny. Sometimes her tantrums (and yes, even at 11 she had tantrums, she wasn’t perfect) were so over the top I couldn’t help but laugh, even though that set her off even more. But she was funny and silly. She made weird and funny faces. A few days after she had her trach placed I was having her make funny faces with me. She made up songs that made no sense and if you told her she was weird she said “thank you.” I miss laughing with her. I miss the sound of her laughter. It was contagious. I have laughed since Ariella died but it doesn’t sound the same to me and it doesn’t feel the same. Many times I’m laughing at something I wish I could share with Ariella because she would also find it funny. My laughter feels hollow now. It’s tinged with sadness. It’s not as loud, not as strong, fades as quickly as it started.

I made it through the line though my eyes were tearing up. While waiting for my drink I decided to check my phone. I wanted to check in on the writing group I’m doing which is on Facebook. I opened the app and had some notifications and I made the mistake of looking at them. One was a beautiful post by the mom of another girl with Ewing’s sharing Ariella’s page and website. I loved that she shared it but I wasn’t expecting to see it and it made me cry. Another had shared a picture of Ariella and her cousins 3 years ago, before it all went to hell. And at the top of my newsfeed was a post with pictures of the Dancers Against Cancers hope stories who are now angels. Just one year ago we were in LA with Dancers Against Cancer (fabulous organization by the way, check them out) for the Industry Dance Awards. Ariella met and bonded with other hope stories and was reunited with friends met that previous April. I never dreamed just a year later she would be there again, but this time in a remembrance video.

I make it home, finally. To this.

Just one more in your face reminder. Fuck you Amazon. Kind of ironic though because Amazon has been my lifesaver. If I need something but am not up for going somewhere, I don’t have to. And you can see from this post why I don’t want to go anywhere.

I just can’t do it. I can’t go on without her. We had so many plans. So many things we wanted to do. It’s not fair that I get to go on living when she doesn’t. I don’t want to go on living. Why couldn’t it have been me? She had her whole life to live. She had so much good to do in the world. She was only just getting started.

There is nothing good that will come from this. There is no lesson to be learned from my grief. Anything I may have needed to learn or do did not require my child to die. At the end of each day I feel like “Yay, I made it.” But for what? What am I making it for? I just have to wake up and do it again. Day after day after day. Just going through the motions. Not enjoying it. Suffering from pain and heartache most of the day. Who wants to live a life in pain and yearning for the one person you can’t have? It just seems so daunting, so hopeless. I don’t know how to continue.

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Friends

Yesterday afternoon I went back to Sinai Hospital to deliver more bears for Ari’s Bears. This time was so much harder than the first time I went back. This time I couldn’t tell her story to the parents without breaking down. This time I had Ariella’s friends with me, mostly school friends, and her absence was obvious. There was no one playing basketball or challenging me to Foosball. It was so quiet in there for having seven preteen girls and one preteen boy. That room was never quiet when Ariella was in there.

I love Ariella’s friends. They welcomed her into a new school with open arms and treated her like a normal kid. They were supportive of her and it was evident how much they liked her. She was the new kid and yet never felt like one. I am forever grateful to her friends for being so kind and loving and welcoming. She truly loved her school and went even when she wasn’t feeling her best. I am also so pleased that her friends are also passionate about Ari’s Bears. They too want to continue her legacy.

But being with her friends at the hospital was so very hard (any of her friends reading this, you guys were incredible and you will always be part of our lives and part of Ari’s Bears, it’s just hard for me to do it without her). Watching them interact, hearing their conversation, and just knowing a member of their crew was missing. Ariella loved being with her friends. She thrived on the interaction. I miss all of it so much. I miss hearing about her friends, having her friends sleepover, watching her become more independent, watching her come into her own. I have a lifetime of seeing girls her age grow up, surpass her, do all the things she will never get to do and that I will no longer get to do with her. As parents we take such joy in our kids. We take pleasure in watching them grow, making their way in the world. We live through them. Our jobs are to raise them into successful, independent adults. Watching the other kids do it just isn’t good enough. Watching other kids do it is so fucking hard. I want her back. I want my baby back. I don’t want to navigate this world without her. I need her to nurture, to love, to take care of.

This morning I was at an appointment with someone at a radiation oncology office. Figured it would be fine, I was just hanging in the waiting room. But while waiting I heard two patients ring the end of treatment bell. The sounds of celebration filled the waiting room. Ariella rang the end of treatment bell twice. First after she finished her first line treatment and second after she finished radiation as part of her relapse treatment. I was so happy when she finished that radiation treatment. For one thing, she was feeling pretty lousy from the radiation so I was hopeful that she would start feeling better soon. But mostly was thrilled to be finished with that phase of treatment and hopefully move onto the next, the bone marrow transplant. Radiation worked. Her tumors were dead. Nothing lit up on the PET scan. It was time to kill those cancer cells for good with new bone marrow. So much hope. Hearing the bells brought me back to those two times when we had hope, a positive outlook. We thought things would be okay. Only to have our hearts ripped out of our chests with nothing left to live for.

I don’t want to do this anymore. I don’t want to cry everyday, I don’t want to live with a gaping hole in my chest, I don’t want to watch or hear about the other kids getting to do all the things Ariella will not. I can’t go anywhere without the threat of a trigger. There is always a reminder, something that makes me think of her. In reality I am always thinking about Ariella. I am always aware of her absence. But some things just slap me in the face. Make it painfully obvious that she’s not there. Makes me miss her even more if that’s possible.

I think my friendships are ultimately going to suffer. Especially friendships made because of Ariella. Not because of them, but because of me. It’s too painful and I fear I may have to distance myself. But then I won’t have anyone outside of family. I don’t know how to do this life. This life is unrecognizable. I am unrecognizable. I am not sure how to go on from here.

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A Letter from Grief

Dear Erica,

You thought you knew me.  We were acquaintances. I have made several appearances throughout your life.  I was disruptive but not destructive. When your friend died in high school I hung around a bit, an almost comforting soul reminding you of the memories you cherished with your friend.  I was not the powerful force to come later.  

Even when your father died I had yet to be a destroyer.  I was a dark shadow dampening your spirit, darkening the days.  Initially I was everywhere, invading your every thought, creeping into your brain with my long, thin fingers.  But I did not have a powerful hold over you. After some time you grew stronger than me. You were able to push me aside and allow other thoughts in.  

But now, Erica, I am a force to be reckoned with.  I am no longer this frail figure hiding in corners, easy to overcome.  I am a monster. A huge, burly creature that will crush you with the weight of me.  I will pound you, shake you, batter you until you are hurting in every bone, aching in every inch of your body.  I am a mist, a fog that will seep inside your mind, spreading into every cell, until you will be so consumed that you will be unable to complete even the most simple of tasks.  No longer a mere acquaintance, I am your constant companion, never leaving your side even for a moment. I am there when you shower, there when you exercise, there when you are with your friends, there when you are trying to avoid me.  You can’t avoid me. Even when you think you can I am hiding under the bed, in a corner, behind the trees, ready to leap out at you when you least expect it.  

But I am not the bad guy.  You need me. Because the most important person in your life died.  The person who completed you, who made you whole, is dead. You cannot ignore that.  I will not let you ignore that. I am here for you. I am here to make you feel, to make you face your loss.  Because only once you face me, every hideous inch of me, can you learn to live with me. I will never go away.  I have picked you up, shaken you, and turned you upside down. I have dropped a bomb on your world, causing an explosion to reach the ends of the Earth.  That cannot be fixed. I cannot be defeated. However one day you just may be stronger than me again. You may be able to push me away sometimes. I may not always be able to flood your brain.  You may even find periods of happiness though they will be tainted with the shadow of me. And I will always return. You may not know when or how but I will be there, for the rest of your life. Get used to me.  Get used to my heavy presence, my oppressive soul because I will be weighing you down, causing you pain and shattering your world over and over again. You will never rid yourself of me but you will get used to me.  In fact, you will hold on to me.

Something else you should know.  Others will think you need to let me go. They will think you are stuck on me, that I am not healthy for you, that I am holding you back from living.  As I said, I am not the bad guy. I am here for you as long as you need me to be. But I cannot make others understand me. I cannot make them understand that though I am ugly and scary and invasive I am a necessary evil and not something to just “get over.”  I cannot make the others understand until I am the same companion for them. The only way to understand me is to know me. You and I have a complicated relationship. You may hate me and you may cling to me. You never know when I might appear and that makes you angry with me.  But you need me and will know me forever.

Yours to hold forever and always,

Grief

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The Retreat

This weekend David and I went to a retreat in Tucson, AZ.  It was for bereaved parents whose children died from cancer.  There is a lot to process from this weekend, but it was good.  We flew across the country to a vastly different landscape and though of course the heavy weight of our grief followed us there, while there it felt different somehow.  I didn’t feel like I was in my real life.  Real life felt far away.  There was a moment when I left dinner to grab a sweatshirt. It was so dark and quiet and peaceful when I was walking to and from the room. I just wanted to soak in that peace and beauty, knowing it wasn’t going to last. I wish I could have stayed there.  Pretend like my life now was a horrible nightmare.  But that would be pretending my past life didn’t exist, and I could never wish Ariella away. 

When David and I were first invited to this retreat we accepted almost immediately.  We were invited within the first month of Ariella’s death so I had no inkling as to how I would be feeling by the time the retreat rolled around.  As the weekend inched closer, I started becoming a bit hesitant.  Not to the point that I wanted to cancel but I was certainly nervous about what was in store for us.  Ariella’s death is still so raw.  There has been no healing, no scabbing over of the wound.  The cuts are still fresh and I don’t know how much more I can bleed from my wounds and still breathe.  I didn’t know if I would have the strength to share my grief with a room full of strangers.  And I didn’t know if I would have the strength to share in their grief either.  But what I realized almost immediately was that these families were not strangers.  It didn’t matter that we had not yet met. There was an instant connection.  Our hearts knew each other.  They knew me in a way no one else can.  This weekend bonds were forged, connections made, and a new family was formed.

David and I left at the crack of dawn Friday, our hearts heavy, leaden with sadness, but anticipating the weekend to come. Two flights, a couple time changes, an emotional breakdown in the Atlanta airport, and 9 hours later we arrived at a ranch in the hot, dusty, dry, Arizona desert with bugs on steroids, an abundance of massive cacti, and breathtaking views. We had time to explore before the retreat officially began and took in this scenery that was so unfamiliar to us. I wrote previously about the desolation and loneliness of the desert but there is so much beauty in the desert as well.

There were 15 families at this retreat. Fifteen dead children. Fifteen families forever changed. More than 15 siblings whose hearts are just as broken. Some, like us, were still fresh to this new life while others were further from their loss. But it made no difference. We all cried just as much, the pain was still evident and raw and present no matter how far along the path. We cried for ourselves and we cried for each other. We felt each others’ pain so deeply, in a way that those who have not been there cannot. But while I was worried it would be too much to share in the other pain, it actually made me feel lighter somehow. Not so weighed down underneath the burden. Because others were there to help me carry my grief, to lift it from my shoulders, to allow me to straighten up, lift my head and talk about Ariella while they really listened. We started to get to know each other. We talked about our children but not always. We are able to talk about other things as well. Where we live, what we like to do, just general life. But we never for a second forgot why we were there, why we met, why we felt so connected. Hugs were freely given, pictures were shared, and stories were told.

We decorated candles for our children and shared our messages that we wrote in a candle lighting ceremony. Most heartbreaking were the messages the children wrote for their siblings who had died. Some had never met their brother or sister while others just said “I want you back”. But deep down the messages were all the same. A deep love for the children that will never fade and persistent pain and heartache. A pervasive yearning for that child and knowing that something will always be missing. That no matter what the families will no longer ever be complete. The ceremony was tragic and beautiful.

Saturday was an emotional roller coaster. We talked about our children. Not so much about how they died, but about how they lived. Even the youngest of the children left their marks on the world. They all had cancer but the circumstances of their deaths were different. Some died from the cancer. Others, like Ariella, from the treatment. And others still from diagnostic procedures where the death of their child was the last thing on the parents’ minds at that time. All tragic. And no matter the official cause we all feel anger and guilt. But no one tried to talk us out of those feelings. No one told us to move on, or that time heals all wounds, or any other trite platitude. We could share anything without judgement, and without others trying to fix us and make it better. Because we all know that we don’t need fixing. Grief is not an illness. We are not sick. But we also all felt blessed to have been the parents of our children that died, even with all the pain we feel now. And it was wonderful to be in a room where everyone understands.

The mood was not always heavy and somber. Saturday evening we gathered for some drinks and then we all had dinner together (all our meals were together). Conversation varied and did not center around our children (though inevitably the talk would always circle back to our kids) and there were definitely lighthearted moments with smiles and laughter. But you could see it in everyone’s faces. The sadness behind the smiles. The smiles that don’t quite reach the eyes. The feeling of “how can I be laughing when my child is dead?” It was a comfort to have my feelings reflected in the faces of others. Grief is a very lonely road and while it can never truly be shared it is a relief to be with others who understand.

The last morning we (except for David-he rode a mountain bike) went on horseback through twisting, hilly, trails to an outdoor breakfast. Despite being bit by one of the horses in the beginning and then having my horse take off because he was knocked into by another horse I really enjoyed the ride. Though I was a bit (extremely) nervous going downhill I mostly relaxed during the ride. Just me and the horse and the beautiful scenery around me. I was able to really quiet my mind and just take in my surroundings. I wish I wasn’t there. I wish none of us were there because of the 15 reasons we were there. But I was grateful to be there. And it was the quiet morning on the horse when I really reflected on the weekend (well other than when we were going downhill and I felt like I was hanging on for dear life). And I started to experience another sense of loss. Because we would soon be leaving our people. These people we already knew before we met. These people who are now family.

The weekend wrapped up with a lovely remembrance ceremony. Pictures of the children were on display. Despite the horrible disease they were facing, their light and joy shone through in their photos. Such vibrancy, such zest, so much potential. A video was shown with the families describing their children in five words. How do you sum up a child in only five words? Those five words cannot begin to describe those children. We heard about each others’ children all weekend and the number of words it would take to capture them would fill a book. And there should be even more. As they were supposed to grow and change there should be more and more words to describe them. Their work here was not done. Their lives were way too short. Fifteen beautiful children who never got the chance to really live.

My words here cannot sufficiently describe this weekend and the emotional impact it had.  This weekend was hard.  At times it was excruciating. There were tears.  So many tears.  Some times quietly streaming down the cheeks and other times ugly, loud and relentless. But there were also smiles and even some laughter. Instant connections were made.  Many hugs were given.  We all understood each other.  It was a safe place. We felt our kids there. David received a blue iguana that he asked Ariella for as a sign. There were multiple rainbows the last day. The siblings bonded very quickly with each other. It was a very meaningful weekend. Humans desire connection. We need it. When your child dies it seems impossible to connect with those that don’t really understand. And we don’t want others to really understand. We wouldn’t wish this on anybody. This retreat gave us the opportunity to make uncomplicated connections. No explanation needed. That is what I have been craving, needing. I was worried it was too soon. But it was the place I needed to be.

Returning home was tough. It hasn’t felt like home since Ariella died. This weekend didn’t feel like my real life and I did not want to return to the quiet, empty, house yet again. I woke up feeling heavy again, bowed down with the weight of grief. I know that grief is here to stay. But that’s okay. Because grief is not the bad guy. I need grief. Because the most important person in my life died. The person who completed me, who made me whole, is dead. I will never learn to live with grief if I don’t face it head on. This weekend was the start of me realizing that one day, maybe, I will be stronger than grief. That I will be able to sometimes push it away, though knowing it will always return.

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The Desert

Another day that you get two posts from me. I wrote this for my group while on the first leg of a flight heading to a retreat. We had a layover in Atlanta and the tears that were threatening to leak out the entire today finally burst out of me while walking through the airport. I hate this.

The forest was my landscape, where everything was lush and green and spectacular.  I was surrounded by beauty. Life was in technicolor, vibrant and bright and exciting.  I couldn’t wait to see what was over the next hill, behind the next tree, hiding in the grass.  Even after D-day, diagnosis day, the forest sustained me. It fed me, nourished me. Was something to look forward to after the desert of the hospital.  Reminded me of the beauty to which we would one day return. The promise of the forest, of life, of renewal, kept me going. 

But then. Then everything changed.  The promise of the forest was gone. Back to the desert I went.  But this time it was even more barren, more arid, with no more promise of the rejuvenation of the forest.

The world around me is now brown, dull, devoid of color, smells and sounds.  The desert surrounds me like a bubble. Life goes on around me with the optimistic sounds and colors of the forest.  The birds chirping, the frogs croaking, the dew glistening on the leaves of the trees. Animals scampering about. A world of hope and beauty and adventure.  But here in the desert all is quiet. No signs of life. Nothing to do, no reason or purpose. The sand seeps into my every pore making me so uncomfortable in my own skin. It begins to pile up around me, threatening to bury me. People can see me in the desert bubble.  They see me suffering, panicking, in pain. They want to help. They try so hard to help. But they can’t break through the barrier. Even when seemingly surrounded by people it is lonely and oppressive inside this bubble. I am alone. 

I can see outside of this bubble.  I can clearly see everything I no longer have.  Intact families. Children. Motivation. Joy. Excitement.  Satisfaction. Contentment. Relief. Optimism. Something to look forward to.  I desperately want to pull it inside this bubble with me but the bubble is impenetrable.  I helplessly look out while the world goes on living, moving on. Wanting to join them but unable to.  

The desert is suffocating.  I can’t breathe in here. I start to cry and my anxiety kicks in. I scream and yell but no one hears me.  I want out. I am pounding on the walls trying to escape. I don’t know how to live here. I don’t like it here.  My body and soul weren’t made for this. I want the forest back. The beauty, the promise of new life. I want to go back to the way things were.  But I know even if I return, if I manage to tunnel my way through this dark hell hole, the forest will never look or feel the same to me again. All the hope and joy has been sucked out of me.  Instead of experiencing the beauty I will be frightened and sad. Wondering what is lurking in the dark corners where the sun doesn’t reach. Scared of the animals baring their teeth at me, ready to attack.  The forest is now filled with monsters that I can’t escape. Pouncing when I least expect it. No place is safe anymore, no matter the landscape.  

As I write this I am literally changing my landscape.  I am on a plane traveling from the hot and humid Maryland to the hot and dry Arizona.  Heading to a retreat for bereaved parents. I had always thought that there was something to be said about a change of scenery to help with a new outlook.  But now I realize it’s just one’s perception. You can be in the most beautiful place in the world and still feel hopeless and suffocated. It’s impossible to appreciate the beauty when you feel dead inside.  I haven’t yet learned to live in this new landscape. It is so different than what I am used to. It’s a place I would never voluntarily go. And yet I’m sentenced here for the rest of my life. I guess one day I’ll figure it out, even if it is just surviving minute by minute, but the world will forever look different to me.  The beauty is no longer in the simple things. Just one more thing I lost along with the death of my daughter.