Be Fucking Merry

There are a lot of demands this time of year. Go shopping. Hit the sales. Buy gifts. Be merry. There are also a lot of complaints this time of year. Complaining about the chaos. Complaining about the money. Complaining about family obligations. The focus seems to be on what has to be done, rather than on what’s most important about the holidays; being with friends and family. What gets me though, is that people bring this on themselves. It’s not necessary to go all out. It’s not necessary to spend a fortune. Most of what is complained about is not necessary to have a meaningful holiday. And hearing the complaints now make me want to scream. I want to yell at the top of my lungs that none of it matters if you have your family with you. Because it doesn’t matter. Please, don’t lose sight of what is important. Because there are many people who would trade places with you in a second. There are family members missing from the dinner table. There are fewer presents to be bought. One less person to help decorate. Everything can change in an instant. Why spend precious time on things that don’t really matter? On things that aren’t bringing you joy but rather annoyance and frustration? When in the end it’s not what you have, but who you are with that matters.

I always loved this time of year. I enjoyed the festiveness. I liked shopping, trying to find that perfect gift. I would get so excited for Ariella to open her gifts, one small gift for each night of Chanukah with a bigger gift the last night. She appreciated everything she got, no matter how small or inexpensive. She was easy and fun to shop for.

So many traditions surround the holidays. We always made latkes and chicken noodle soup one night of Chanukah, both from scratch. We would drive around the see the light displays. Go to the train gardens. See the Nutcracker. After Thanksgiving Ariella would help decorate my aunt’s Christmas tree and set up the Christmas village. She would decorate cookies with her cousins. Though we are Jewish we have family that is not. We spent Christmas Eve with one side of the family and Christmas Day with another. New Year’s was spent with our neighbors and their daughters, last year adding a bunch of Ariella’s friends into the mix. There was always tons of food, sparkling cider for the kiddos, and then Ariella and I trying to make it to midnight. She made it twice. It was always a very busy time of year but I wouldn’t have changed a thing. I enjoyed the busyness. I looked forward to all the family time. We had a lot of fun.

Now all the traditions mean nothing. Ariella is not here to share in them anymore and I want nothing to do with them. Holidays are about family and my family has been torn apart, with the most important person gone. I don’t care about any of it and plan on ignoring all of it, including my birthday, over the next few weeks. I won’t be buying gifts for anybody. How can I shop for others when all I want more than anything is to be able to shop for Ariella. I don’t want to acknowledge any of it. Without Ariella the holidays mean nothing.

It is really hard to be anywhere this time of year, surrounded by reminders of the holidays everywhere. I had to run into a store the other day and I barely made it. Walking past the holiday displays. All the small gifts items that Ariella would love. The clothes she would ask for. Hearing the Christmas music. The holidays are the topic of conversation this time of year. I don’t want to be around happy, merry people who are excited for the upcoming weeks. I can’t relate anymore. I don’t want to be merry. I don’t want to partake in any of it. I don’t even want to hear about it.

Every day it’s a new obstacle. I’m constantly walking through a minefield and this time of year there are land mines everywhere, on top of the constant grief. No place is safe and I just want to curl up under the blankets and not emerge until January. Honestly, I would rather never emerge. I would prefer to go to sleep and not wake up. But against my will I keep on living.

Thanksgiving Weekend Part II

The rest of the holiday weekend was… a lot. Mostly good, but a lot. It is hard to be around a group of people who are happy and carefree when you are not. Most of Friday late afternoon and night was spent in one bar or another. Surrounded by the sounds of conversation and laughter. The noise of people having a good time. I was a bit player. Mostly observing, not really taking part. I tried. I didn’t want to be a downer. I wasn’t out to ruin anyone else’s good time but I just could not fully participate. Even in a completely different context, a situation in which Ariella would never be, I missed her immensely. She is never out of my thoughts and that makes the rest of life feel meaningless. I felt like I was observing from afar. I could see them and they could see me but with significant distance. That’s how I feel most of the time. That I’m in this bubble that filters out any feelings that aren’t related to sadness or anger, leaving me feeling alone and despondent even when among people. It’s not that I don’t necessarily wish to participate, but the shadow of grief surrounding me prevents me from being more than an bystander.

Despite the cold temperature I did enjoy the football game. When watching a sporting event it is okay to be a casual observer. I could focus on the game and not worry about anyone or anything else. But of course thoughts of Ariella continued to flood my mind. Remembering the last time we were at a Maryland v Michigan State sporting event. Remembering football games we went to. Wondering if she would have enjoyed this one, or if it would have been too cold for her? I was looking forward to the change of scenery but there is no escaping her absence.

Getting away was good but by the end of the trip I was really looking forward to being back home. I didn’t want to be “on” anymore. I was tired. So very tired. I’m still tired. Grieving is exhausting. Having to live when it’s the last thing you want to do is exhausting. Just existing in this state. In constant anguish and turmoil, is exhausting. Most nights I do sleep, but I never feel rested. I am mentally, emotionally, and physically drained.

And now here we are in the thick of the holiday season. I flip through the radio stations in my car and hear a snippet of a Christmas song. For some reason Ariella loved Christmas music. She would sing the songs all year long and she battled me in the car to listen to the 24/7 Christmas music station after Thanksgiving. We don’t celebrate Christmas but we did spend it with my mom’s family. Ariella loved decorating their tree and making cookies. The ads, the decorations, the music, the reminders everywhere of happy, festive celebrations. I walk through a store and see all the gifts I would buy her. All the things she would have asked for. One small gift for each night of Chanukah. There is no hiding from the holidays. As much as I try I get hit with one thing after another after another. I used to love the holiday season. Now it just mocks me. Flaunts itself. Dangling in my face what I no longer have.

Words have not been sufficient to express how I’ve been lately. I cannot effectively write how I am feeling. The words I use cannot begin to describe what life is really like. Each day I wake up with a sense of dread, even more now that it’s holiday time. And it’s everything I can do to get through the day.

Triggers Everywhere

Beeping. Flashing numbers. Pulse Ox. Alarms. Scrubs. Hospital bed. Dinner tray. Pink pitcher. IV bags. Things I never wanted to see or hear again. Things that immediately bring me back. To inpatient treatment when we were hopeful. The the ICU when Ariella lay dying, hooked to a machine keeping her alive, but not well enough.

The sights, sounds, and smells of the hospital should be easy to avoid. Until you have to visit someone in the hospital. Which I did. Seeing the numbers flash on the monitor brought me to our days in the ICU, staring at that screen for hours, willing the numbers to change in the right direction. The IV pole. When Ariella was feeling good she used to love to ride on the IV pole through the hallway. We spent much of 2017 in the hospital and I actually have many fond memories of that time. Because despite everything there were times she had fun, times she enjoyed. Fun visits with friends. Decorating her room. Playing games. It wasn’t all bad. In fact there were many smiles and much laughter through many of our hospital stays. Sitting in the hospital room the other day all I wanted to do was escape. Because it reminds of the fond times we had and I miss them. Because it reminds me of the horrific end of her life. Because if I’m going to be in a hospital I want it to be with Ariella.

There are the fond memories and then there are the memories of the ICU. And it’s traumatic sitting in a hospital room being reminded of Ariella with tubes coming out of everywhere, hooked up to an obscene number of machines and pumps, and not being able to be saved. I never want to see the inside of a hospital room again. I know that’s not feasible. Shit happens. Triggers can’t always be avoided.

Speaking of triggers, I wish there was a place to go from October to January, where there are no signs of holidays. No pumpkins, no turkeys, not a single strand of lights. I don’t know how I’m going to survive the next couple of months. The commercials, the decorations. The people who love the holidays, every second of them. The people who hate the holidays, because of the stress. Both make me angry. Those who love them because I used to love the holidays too. Thanksgiving was always my favorite and I just used to love the festiveness from Halloween through New Year’s. Now there’s nothing to love about this season. Ariella isn’t here to help me set the table for Thanksgiving and write the menu on her dry erase board. Her menorah will be left unlit this Chanukah. No one to anticipate the gift she will get each of the 8 nights. She was so grateful for all her gifts, no matter how small. No one to try to stay up with until midnight on New Year’s eve. Every wreath, every roll of gift wrap is a slap in the face. A reminder of what I am missing, of who I am missing. Seeing everyone happy and excited about the holidays just makes me long even more for what I can’t have. Those ranting about the stress of the holidays also make me angry. Because they should be grateful they have their families to celebrate with. Now I know many might also be dreading the holidays for the same or similar reasons as me. But those are not the people I am referring to. I am referring to those that only see the work, the stress in a holiday, taking for granted that they have a family to share it with. Holidays don’t need to be stressful. They should be about family and friends and spending time together. That makes a perfect holiday. The rest doesn’t matter. So it pisses me off when people complain about the trivial stuff that just isn’t important.

I don’t want to be in the world. This world is so fucking painful. It’s been almost 6 months without my girl and I am absolutely dreading the next couple of months. And then it will be February, the month my dad died, the month Ariella was officially diagnosed, the month that started the end of it all. The triggers, reminders, dates are never ending and I have years and years and years left of yearning, of anguish, of heartache. I just want it all to be over.

Halloween

Of all the days I have been dreading since Ariella died, I think I have been most dreading Halloween. Yes, even more than her birthday. Because I can’t escape Halloween. I am assaulted by reminders in stores, at work, in radio commercials. “Come to our fall festival.” “Come pick your pumpkin and get lost in our corn maze”. Parties, Trunk or Treats, festivals. Advertisements abound for costumes and decor and even Halloween cocktails (which may just be how I survive the night). Visual and tactile reminders everywhere of what Ariella is missing. Of what we are missing. I miss the excitement, the anticipation. I long for the days when we would spend hours at a local farm, letting Ariella lead us in the corn maze, visiting the petting zoo, going on hayrides, and of course choosing a pumpkin. We would go home and carve the biggest pumpkin we could find and then roast the seeds until they were fragrant and crispy. I miss having my house decked out with spooky decorations, a seasonal tchotchke on every surface, and the house smelling of apples or cinnamon. Ariella loved to decorate for Halloween and the creepier the better. This year there is not a fall decoration to be found in my home. It looks like any other day, like any other season. Which is apt, because every day is the same. Filled with intense longing and anguish that doesn’t disappear until I fall asleep at night. I don’t want the holiday trimmings without Ariella to enjoy it. But I can’t ignore it. It’s everywhere. Fall is fully in the air and I don’t want to participate.

What kid doesn’t love Halloween? Ok, there are some that don’t but for most it’s dressing up and parties and games and festivals and candy. More than just one day, the weeks leading up to Halloween are filled with excitement for children. Planning costumes, picking and carving pumpkins, events leading up to the big day. It’s a great time to be a kid. Ariella loved it so much it was probably her second favorite day of the year, her first being her birthday. She would be so excited about her costumes that she often had the next year’s costume planned before the current year’s Halloween had even arrived. Case in point, last year she was Hermione but weeks, maybe even a couple months before Halloween she already knew she wanted to be Harry Potter this year. She could be playing in a blizzard in February or swimming in the pool in the middle of summer, thinking about Halloween.

When Ariella was 5 we started the tradition of trick-or-treating with 2 other families, neighbors of ours. We would have pizza at one of our houses and then go trick or treating throughout our neighborhood. Each year I loved seeing the pictures of the previous years, watching the kids grow older and more independent with each passing year. They trick-or-treated together each year from that year through last year (well last year without one of our neighbors as they had moved) with the exception of 2017, when Ariella spent Halloween in the hospital. Last year Ariella had more freedom with trick or treating, leaving us behind while she and her friends made their way down the street. And she was already talking about the next year, when she wanted to go trick or treating with her friends from school, without parents at all. She never got the chance. She never got the chance to increase her independence from us, experience the teenage years, mature, grow up. She never got the chance to live her life as a fully formed person. She was growing up but still very much a child. And it breaks my heart that we will never get to see the adult she would have become.

I want nothing to do with Halloween. I don’t want to see it, hear about it, partake in any related activities, even be in my house because I don’t want to see or hear the kids having a great time, doing what any child would be doing, what my child should be doing. I don’t want to hand out candy and see the adorable kids in their adorable costumes. The chatter and laughter of the children pierces right through me. There is a laugh, a smile, missing. There is one fewer child knocking on doors, exclaiming over the candy she received, giggling through the streets. I don’t get to go home and check out her stash and steal her Almond Joys and then coax her to bed since it is a school night. Halloween is just one more reminder of everything we have lost.

The last place I want to be is at home. I was actually in the midst of trying to think of someone without kids, or with older kids, that would be available to go out to dinner with David and me so we would be away from home, away from the bustle, away from the trick or treaters. Our rabbi has brought dinner to us several times since Ariella died and it just so happened that he texted us to see if we were available on Halloween for dinner. I jumped at the chance and said as long as we we could go out this time, not stay at our house. So for the first time ever our house will be dark, uninviting. No pumpkin lights lighting our steps and no jack-o-lantern gracing our stoop. There will be no candy, just disappointed children if they happen to ring our bell.

This is my life now. Constantly navigating a battlefield trying to avoid landmines. Everything is a trigger but one false step and I hit the big one, and BOOM! It all comes crashing down again. It is exhausting and dispiriting. It is disenchanting to no longer enjoy activities and events and holidays that I once loved. I never used to want to escape from life and now I can only dream of getting far, far away from everything.

Since I can no longer partake in sharing of our kiddos in costumes here are pictures of Ariella through the years, in chronological order. Her first Halloween she was just 4 weeks old.

I still can’t believe that this is it. Any pictures I share of Ariella will be old, of memories, pictures others have seen before. No new ones. No new memories. No future milestones. I hate this. I fucking hate this and wish it all would just end.

4th of July

Ariella always loved the 4th of July. We spent several of them at the beach which she really loved, but we also enjoyed the 4th when we were home. Barbecues and fireworks with friends would be a typical 4th at home. She loved sparklers and poppers. Really she loved anything that made a lot of noise. She certainly was loud!

Two years ago July 4th was spent in the hospital. Ariella did not let that stop her from being festive. A friend brought us burgers and Ariella had a great time making fireworks decorations for her room. She had a chest tube at that time because of the 2nd pneumothorax but that did not stop her from getting to see fireworks. Nurses arranged it so that we were able to watch the fireworks from the helipad. It was definitely a neat experience. One that at the time I would have rather not had (because we had been in the hospital for quite a while by this point and who wants to spend any holiday in the hospital) but I would give anything to be back there. Because though she had cancer she was alive and we were optimistic that she would be ok in the long run.

David and I spent the 4th with some friends. It was bittersweet. Ariella should have been there. We are friends with the 3 families we spent the day with because of Ariella. Ariella danced with their children. Friendships made because of Ariella will be tricky to navigate. Because I have to watch their children do all the things Ariella should be doing. Many friendships were made because of our roles as dance moms. I am no longer a part of that world. Some friendships with the dance moms are stronger than others but I don’t want to lose the connections I made. And yet. As the kids continue with their dance and the next dance season starts I worry it will be too hard to see those moms. Because their kids get to move on, grow up, enjoy their passion for dance. So much of the time spent with the moms was at the studio or competitions. I don’t get to do that anymore.

Some of Ariella’s friends have been texting me, to check in and tell me about their days. I love hearing from them. I want to watch them grow up, celebrate their achievements and milestones with them, and basically just live vicariously through them. But that is also bittersweet. But I think maintaining a connection with her friends helps me forge a different connection with Ariella. Because she was different as a friend than as a daughter. So it’s worth it.

That all said, I truly do want to hear about friends’ children. Just know that sometimes it may be too hard.