So Very Tired

I don’t post much on Facebook, other than childhood cancer awareness posts. But the other day, I just felt so tired and fed up that I wrote a very long rant, which I accidentally deleted before finishing and posting. I didn’t have it in me to type it all again, which probably was a good thing. Because I am not looking to argue. I prefer to express my views and thoughts and feelings here, where people have to make an effort to read them. Sure it’s just clicking a link if I share it to Facebook, but that in and of itself is a choice, rather than maybe catching a glimpse of what I wrote when scrolling by. Some people use Facebook to share their lives and join groups and communities. Others may use it to spread information and share facts. But it seems so many use the platform to spread lies, rumors, hate, and racism. What I see there on a daily basis disgusts me. My friends list consists of people I actually know in real life, cancer families, and bereaved parents. Most of what I am referring to is not posted by people on my friends list. It’s comments on articles or other posts, or posts and comments in groups I’m in. But I have blocked friends for things they have posted and will continue to do so. Not for things that are a simple difference of opinion, but things that are clearly hateful and racist. It’s not about politics, it’s about human rights and basic decency. Anyway, I did not intend to write about Facebook, so let’s get to the point of my post.

I mentioned that I started my Facebook post because I was tired and fed up. I know many of us are, for various reasons. What prompted me to start that post was just one more comment about how mandating masks violates rights. Blah, blah, blah, whine, whine, whine, my rights, my rights, my rights. Requiring a mask in a store is no different than requiring shirts and shoes. You don’t like it, don’t go. Sure there may be some medical reasons why one cannot tolerate a mask, but I see so many, so many people say they can’t wear one and I highly doubt it’s that widespread. They are uncomfortable and hot but that doesn’t mean you can’t wear it for the short amount of time you are in a store or ordering food or whatever. If you truly cannot, this doesn’t apply. I certainly am not going to be the mask police because I don’t know someone’s reason for not wearing one, but I will certainly give you the side eye if you are say, not wearing a mask while walking through the gym even though it is the rules of the gym (you do not have to wear the mask once you begin exercising). If you can walk on a treadmill, you can wear the mask to get there. You know who I never seem to see complain about wearing masks? Children. I have seen children out at the stores, all wearing masks and wearing them correctly. I’m sure they pull them up or down at times, but mostly they seem to be keeping them on. Yet adults are throwing tantrums over this. Every time I put a mask on, every time, I am brought back to the oncology clinic when Ariella would have her port accessed. I had to mask up for that. This is what masks remind me of. Ariella getting jabbed with a needle so her toxic chemotherapy could be delivered. I see the needle and the room. I smell the smells. Wearing a mask physically brings me back there. Seeing masks everywhere I go brings me back to the ICU, when anyone coming into Ariella’s room had to wear a mask. It takes me back to that room, Ariella lying in the bed, connected to machines and the ventilator. I hate masks. They are a trigger for me and completely unavoidable. But I wear them. I wear them for the community. Many say those who are more susceptible should just stay home. But say they do? What about the people that shop for them or care for them? Those people do need to go out in the world and if they are exposed, they bring it to the people they are caring for. Masks work. But I know that I am not going to change anyone’s mind who disagrees, and that is not the point of this, so I will not say anything further, other than this. Even though I think anyone who can wear a mask, should, I do not agree with “mask shaming.”. As I mentioned, there are valid reasons why someone may not be wearing a mask and unless you know their reason, it’s not your place to enforce the rule. Just stay away from that person if they make you uncomfortable. Now if they are being an asshole about it, refusing to wear one just because “I can do what I want, I don’t have to wear a mask”, then handle that as you like.

I am tired that people complain so much about minor inconveniences when yet another family that we know had to say goodbye to their child because of cancer. America is a country full of selfish and entitled people who do not realize how good they have it. Does the pandemic suck? Yes! But most hate it because of the quarantine. What about the people that have died, or have lost loved ones? People like to quote statistics. They like to say it’s such a small number that die. But what happens when it’s you, or your child or loved one? Do you want to be treated as a statistic, or a person? People take comfort in statistics because they can think chances are low that it will happen to them. Well you know what is rare? Sarcoma. The chance is low that you will get sarcoma. Well that is little comfort to me. And if there was a way I could help prevent others from getting sarcoma, or any cancer for that matter, I would do it. There is a way to help prevent Covid, and that is a mask. Shit, back at the mask again. That wasn’t my intention here. It’s just such a minor thing when there are people out there with real issues. The constant complaining is wearing on me.

I am tired of the racist posts and memes I have seen on Facebook. If you find yourself unfriended or blocked, that is probably why.

I’m fed up with people who apparently seem to think that now that a year has passed, we are okay and there is no need to reach out anymore. It hurts. It hurts a lot when people disappear. I know people have their own lives and my loss is not first and foremost on their minds, but still. My circle has gotten significantly smaller. I do take comfort in those that are still there (hopefully you know who you are) because I know it hasn’t been easy. I still do not always respond to messages, I often do not want to get together, and I almost never will initiate any kind of plans, or even conversation. But I always appreciate the effort.

I’m tired of kids dying from cancer. I’m tired of the lack of attention and funding pediatric cancer gets. Imagine if there was the same attention and outrage for childhood cancer as there is for Covid-19. The difference is cancer isn’t contagious and statistics say childhood cancer is rare, so again, people think it won’t happen to them. But really, who the fuck cares if it’s rare?! Isn’t one child dying one child too many? Our children are worth more than that.

I’m tired of living. I’m tired of my empty life and quiet house. I’m tired of trying to figure out how to fill my days, especially now that I’m not working for the summer. I hated, HATED doing my job virtually, and I was so happy for the last day of school. But now I’m struggling with trying to find distraction, finding something to do to keep me from screaming in a rage. Trying to figure out how to just “be” is exhausting. Grieving is exhausting. I’m so tired.

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.

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?

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.

A New Month

Have turned the calendar twice now since Ariella died. Almost 2 months without her. Every turn of the page takes me further from her. On the other hand, I wish I could just keep flipping and flipping and flipping the pages to make time speed up. But it’s just the opposite. The days drag and sleep is barely an escape because sleep is elusive. Most minutes of most days are torture and I’m wondering once again how I am actually going to survive the rest of my life without my daughter in it. The okay day Saturday now feels so far away, just 2 days ago.

I can’t even explain what makes one day harder than another. There doesn’t seem to be any rhyme or reason. It’s just what I’m feeling at any given time. I will say that today I was triggered by a Facebook memory of Ariella and my father together at a baseball game. They are both gone now and I was so close to both of them. Ariella and my father very close as well. She was devastated when he passed in 2016. The picture was from 2012 so she was 4 1/2. Their birthdays are 1 day apart and were always celebrated together. I think they have a special connection. He died in February 2016 and she was diagnosed in February 2017. She had her bone marrow transplant in February 2019, one day after the 3rd anniversary of his death. I took that as a good sign, that maybe February would finally be associated with good. But nope February sucks. Now they are just 1 grave site apart.

I have a love/hate relationship with Facebook memories. I do like reminiscing but they make me so sad that we won’t get to make more memories. Facebook itself is a trigger. I actually don’t do much on Facebook but post my updates, check in on my bereavement groups, and check on the cancer families I have gotten to know so well. The rest is just too hard to look at. I may start scrolling but it’s all happy families, family vacations, Ariella’s friends doing things without her. It’s too painful to see what Ariella should be doing and what we should be doing as a family but can do no longer. We know our family and friends and Ariella’s friends are sad and miss Ariella, but it doesn’t consume them and it shouldn’t consume them. But I can’t lie, it is painful to see everyone else going on happily living their lives when we are stuck in the depths of despair.

Summer is a trigger. Not my favorite season but my favorite time of year usually. I haven’t worked the past 3 summers so got to do many mother daughter activities. Not so much in 2017 because Ariella was in the hospital much of that summer but even though she was in treatment 2018 we got to enjoy that summer the 2 of us and as a family. But generally during summers we would go to New York (started that tradition when she was 5 years old) and see shows on Broadway and take at least one other day trip. At least one family vacation every summer. Long days at the pool with evening swims. Hikes and finding waterfalls. Family bike rides. Parks and playgrounds. Snowballs and Rita’s. Strawberry and cherry picking. Going to baseball games and amusement parks. Ariella was fearless. The bigger, faster, and scarier the roller coaster, the better! Last summer as a family we went to Disney World through Make-a-Wish and Ocean City with Believe in Tomorrow. In addition to that Ariella and I went to LA for Dancers against Cancer. So much family stuff happens in the summer. I don’t have much to do this summer but haven’t even joined our pool (though I usually love the pool) because Ariella should be there with me, bugging me to watch this and throw this and play with me. Not sure I can go there without her. Not sure how I am going to survive this summer. I guess like everything else minute by minute, sometimes second by second. In no particular order by year here are some pictures from various summers.

One thing did make me smile today. Not one, but two of Ariella’s friends texted me today to see how I was and let me know they were thinking of us. They’ve reached out to me more than people I expected to and haven’t, and I am so grateful that Ariella had such good friends. I am grateful to her newer friends from 6th grade for welcoming her into a private school where the others mostly had been in school together since kindergarten. It didn’t take her long to have a good group of friends and they were amazingly supportive of Ariella during her treatment (she was in outpatient treatment during the entire time she was in 6th grade, all of 5 1/2 months) and when she was in the hospital. I am grateful to her dance friends as well for reminding her always that she was part of their family even when she wasn’t able to dance. I think many adults could learn a lot from Ariella’s friends.