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Grief is Not a Four Letter Word

I can’t. I can’t do this. I can’t live like this. I can’t live with this huge, gaping hole in my heart. I know I’m redundant. I repeat myself quite a bit. But that’s the theme here. How does one go on living when the person that made them whole is gone? How does one move forward when all she wants to do is curl up in the fetal position and stay there indefinitely? How can I interact with the world when it feels like the world is conspiring against me? I know we’re not the only ones in this world grieving or sad or angry or dealing with what feels impossible. But all I see are people living their normal lives. Carefree. Happy. Satisfied. And all I feel is anguish, intense longing, despair, heartache. Minute by minute, second by second. What a horrible existence.

Here’s the thing about grief, especially with the loss of a child. The sadness alone is overwhelming and intense. The yearning to hold your child again, hear their voice, feel their arms around you. But it’s not just about the sadness of missing the person most important to you in the world. It’s about all the unfulfilled plans and dreams. It’s about the guilt and regrets. The “What ifs?” It’s reliving their last few days, weeks, months, begging and pleading for it to just be a horrible nightmare. It’s being confronted with the reality of it every morning when you wake up. It’s about having to get through each day minute by excruciating minute with no reprieve. It’s about all the conversations you never got to have. It’s about not having nearly enough time with your child. Parents should not outlive their children. It’s about watching their friends live their lives, grow up, achieve their dreams without your child. It’s about losing your role/identity of being an active parent (especially if it was your only child). But even if not your only child, parenting roles and sibling roles change. It’s about getting used to this new life without that child. When a child dies so do all their dreams and wishes and goals. The parents have only the memories to carry them through and that is just not good enough when you have so many plans that can never be fulfilled. It’s just not the natural order of things. Your whole life changes in an instant and that makes grief that much more complicated. You’re not just grieving the loss of the person, but grieving the loss of everything else as well.

Everyone has heard about the 5 stages of grief. Denial, anger, bargaining, depression and acceptance  I have since learned that Kubler-Ross came up with the stages through observation of terminal patients. She never intended it to be a road map if you will of the grieving process. These were stages terminal patients were observed to go through when confronted with their own death. They weren’t linear or orderly and weren’t meant to describe the grief of those left behind. I think the misunderstanding of the intent of the stages complicates matters. I’m learning through my groups and interactions that bereaved parents are often expected to “move on”, “get over it”, not stay “stuck” in their grief. They are expected to move through the stages and then in a year or so are expected to be just fine. But they’re not just fine. Three, five, ten years later the pain and heartache is still there. They may have learned to live with it and maybe have started living again rather than just surviving, but they long for their child just as much. Attitudes like that towards grieving parents is isolating and makes the parents feel like they are abnormal, unhealthy, or should be medicated. So far I have been fortunate not to experience the negative attitudes but this is still very new or fresh. I have no idea what’s coming down the road and I would find it extremely hurtful if I was on the receiving end of comments such as those. When your child dies, a part of you dies with them. No amount of time can fix that. No amount of time will make it okay that your child died before you. No amount of time will heal that wound, cure the sadness, cure the longing. Just think about how much you miss your child when they are at camp, or when you go away and leave them behind for a week, or when they sleep out or are at their other parents house if parents aren’t together. Now imagine that, forever. Knowing you will never see them again. Time will not make that better.

I do think those stages have a place when describing grief, but not in a prescriptive way. They help to describe what someone may be experiencing but should not ever be used to prove to someone that they are “stuck” or should be in the next stage by a certain point in time. Everyone experiences grief differently and should not be held to some standard timeline. Some may experience all the stages, some may experience only one or two. You could go through all the stages in a single day, experience multiple stages at the same time, or stay in a stage for weeks. Grief is so much more than the stages. It manifests differently from day to day, hour to hour. Grief is being on the verge of tears all day some days but barely crying other days until a trigger sets you off. Grief is being irritable, getting frustrated with the smallest things. Grief is feeling lonely when you are in a room of people. Grief is physical pain and illness; nausea, headaches, body aches. Grief is being afraid to talk because if you talk, you’ll cry. Grief is antisocial. Being unable to make small talk, or smile when someone talks to you, unable to say okay when an acquaintance asks how you are. Grief is anxiety. Being afraid to do anything because you don’t know when the grief wave will overtake you. But. Grief is necessary. The pain, the sadness, the grief cannot be pushed aside. No matter how long it takes being with the grief is the only way to eventually survive. Do not try to hurry someone along their grief path.

The unconditional support I’m receiving is the only reason I’m surviving right now. I have a list of people I know I can call or text anytime and they will be there. But surprisingly the one helping me quite a bit is a friend of Ariella’s. She texts me everyday just to tell me about her day. These are the things I’m missing and I thought it would hurt too much coming from her friend and not her but it’s actually quite nice. I don’t think she realizes she’s helping me (well she does now), I think she likes maintaining a connection in a different way to Ariella. I took her to lunch today and it felt nice to have a conversation with someone Ariella’s age. We talked about Ariella a bit but she didn’t dominate the conversation. Her friend is a way for me to have a different connection with Ariella as well. She is a very sweet and caring soul. Ariella was lucky to have her. She even bought me the perfect gift. A necklace with three little birds, like the song, like the painting Ariella did, like my tattoo. Don’t get me wrong, I wish with every ounce of my being that I was taking them both to lunch. It isn’t easy to hear about the things her friends get to do. But I miss that life. I miss those conversations. I’m glad that in some way I can still be a part of that world.

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Trust

Ariella trusted us. From the time of diagnosis she trusted that we were making decisions based on her best interest. She dreaded chemo, dreaded radiation, dreaded all of it but she never really argued about it because she trusted us when we said it was what she needed to do to get rid of the cancer. We never kept things from her. When she was getting ready for her limb salvage surgery she knew it was a possibility she would wake up with part of her right leg amputated. But still she trusted us that the surgery was the right decision. We never promised her she would be cured. But we always said the doctors were doing everything they could. When treatment was working we shared that and when it wasn’t we shared that as well. She never lost hope because there were always other options. I remember one day getting scan news that wasn’t what we wanted. When I picked her up from school and told her about it and told her treatment would be changing she said “that’s okay, at least I still have options.”

When it came time for the bone marrow transplant Ariella was understandably scared. She knew about the radiation prior and the high dose chemo that would once again make her feel lousy. But once again she trusted us when we told her she would get through it just like she got through all her other treatment and it was her best chance to get rid of the cancer once and for all. And she went into the hospital with a positive attitude. Up until she started feeling the affects of the chemo she was dancing and singing with friends, playing games, roaming the hospital, and playing pranks. She was no longer scared. She trusted us and the doctors that all would be okay.

This is one of the images that plagues me. Ariella so hopeful and optimistic in the hospital, acting like she didn’t have a care in the world. Ariella receiving the bone marrow without complaint. Ariella and I watching TV and hanging out in her hospital room just talking and cuddling in bed together. Getting texts from Ariella when I wasn’t there. All that time just waiting until her blood counts came up so she could get out of there and get on with her life. She trusted me when I talked about all the things we would do once she had clearance from the doctor. She had no doubt at that point that everything was going well and it was just a matter of time before she would be sprung from Hopkins.

I guess this goes along with my regret and guilt. Ariella trusted us that the bone marrow transplant was the right thing to do and yet it ended up being the cause of her death. We let her down. We made the wrong choice. Yes I know hindsight is 20/20 and we made the best choice we could have with the information we had at the time but that still doesn’t change the fact that the two people who are supposed to keep her safe failed to do so by authorizing a treatment that has known severe complications. I see her happy and okay one minute and then everything changed in the next when she was intubated and scared she was going to die and always had sad eyes. And we couldn’t effectively comfort her. We couldn’t keep her safe and we couldn’t make her feel better.

Along with a lifetime ahead of missing Ariella and missing the memories we will never get to have, I have a lifetime ahead of having to live with those images of Ariella with sad eyes in the ICU, wondering how it all went so very wrong. She thought she would be fine, she’d get through BMT and have a lifetime of fun and friends and dancing ahead of her. At some point in the ICU she realized that was not the case and she might not be okay, even though we told her she would be. I made it a point to never lie to her about her illness but I didn’t think I was lying when I told her she would come through BMT just fine. I never thought death was a possibility. I just hope she never blamed David or me during that time. I know I blame myself enough. If only, if only, if only.

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I Miss…

I’m done, fried, exhausted. I honestly don’t know how I’m going to survive this. I don’t want to survive this. Everything hurts. Everything is a reminder of what I’ve lost or of what I’ll never get to experience in the future. I am aware 24/7 of what’s missing. I go to the gym for some distraction. Sometimes it helps. Most times I’m fighting back the tears even during my workouts. But that is the only thing that has remotely helped. So I keep going. I hate this. I hate everything about this. Each day is worse than the one before it. I don’t want this life.

Running through my brain on a constant loop are all the things I miss. I miss brushing and playing with Ariella’s hair. I miss watching her do her hair and make-up. I miss driving her to clinic appointments. We had some fun car rides and great conversation on those drives. I miss picking her up from school and hearing about her day. I miss helping her with her homework. I miss the sleepovers the two of us used to have in her bedroom. I miss movie and game nights. I miss watching her dance. I miss doing her make-up for dance competitions. I miss listening to her sing in the shower. I miss having her friends over. I miss taking her to Build-a-Bear. I miss delivering bears with her. It’s definitely not the same without her. I miss our vacations and day trips and seeing musicals together. I miss watching her swim in the pool and the ocean. I miss watching her on amusement park rides. The bigger and scarier the better. She was fearless. I miss watching her make up dances. I miss cooking for her. I miss her hugs and kisses. I miss her voice. I miss hearing her say “Mommy” and “I love you to the moon and back infinity times.” I miss going to her school activities and buying school supplies. I miss going for pedicures together. I miss her pranks. I miss her energy, her noise. I miss hearing her shows on the TV. I miss reading to her and I miss us reading quietly together. I miss helping her with her crafts. I miss riding bikes together and watching her play outside. I miss her messy room. I miss the silly faces she used to make. I miss how she had to completely clean her fork before using it for a different food. I miss how she was always spinning. I miss how she wiggled her tush. I miss her smile and her laugh. I miss her attitude and eye rolls. I miss hearing her yell in frustration when she was having trouble with her homework. I miss her arguing over nothing. I miss her company. I miss her presence. I miss how she took forever to do anything. I miss her comfort when I wasn’t feeling well. I miss her weirdness. I miss driving her to the dance studio. I miss our conversations. I miss her silliness and goofiness. I miss going places like the zoo and aquarium and science center and museums. I miss taking her ice skating. I miss taking her to baseball games and soccer games and concerts and mini golf. I miss binge watching shows with her. I miss going out to dinner with her. I miss stalking the camp website for pictures when she was at sleepaway camp. I miss taking care of her. I miss her needing me. I miss the days when she was giving us a very hard time. Her 8th year was a rough one. How naïve I was. We had no idea how bad it could really get.

I miss a lifetime of future moments we will never get. I miss watching Ariella get ready for her first date. I miss her Bat Mitzvah (was scheduled for 9/26/20). I miss teaching her to drive. I miss helping her get ready for prom. I miss watching her graduate high school. I miss sending her off to college. I miss watching her graduate from college. I miss watching her start her career (she wanted to be a nurse). I miss planning a wedding and having grandchildren. And I miss all the everyday moments in between.

Before I have said I’m surviving, but not living. But the truth is I don’t really think I’m surviving. I guess if by surviving one means waking up each day, then I am. But the pain and heartache constantly knocks me to the core. I’m not very good company, even for David. I barely talk, mostly just to answer questions. I don’t do much of anything. I may read, mostly grief books but sometimes other mindless type reads. Or I just lay around with HGTV on in the background. I can’t fake a smile for strangers and the thought of doing almost anything besides going to the gym and maybe seeing some friends terrifies me.

As I’ve mentioned before many bereaved parents have said they eventually did find joy, they did find a purpose, a reason to live. But the minimum amount of time I’ve seen before that happened was 4 years, often longer. Four years! Four years at least of feeling like this. That alone is terrifying. It hasn’t even been 3 months and I’m wondering if I will make it through. Every moment of my life right now is plagued with sadness and despair. This is no way to live and it’s already taking its toll. How? How am I going to survive this?

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Not Okay

Every time someone asks me how I’m doing I usually respond with “okay” or surviving”. The truth is though, that while I guess I am surviving I am not even close to being okay. I’m either not doing well or worse. There is no okay about it. Even when I look okay I certainly don’t feel okay. Words cannot begin to accurately describe how I feel. Words like shattered, heartbroken, devastated, broken, anguished, despairing, wrecked, traumatized and crushed could be used to describe how I feel but even they don’t grasp the depths of the emotions. I feel all those things to the extreme. What I do know is okay is not an adjective that fits. There is nothing okay about this. There is nothing okay about how I feel. So when I see you and tell you I’m okay, know that I’m really not. I don’t know when I’ll be okay again.

I’m sitting in Starbucks waiting to meet someone. Now playing on the radio is Elton John’s Tiny Dancer. A song played at Ariella’s funeral. Cue waterworks. How am I supposed to function in life when I can’t go in public without the threat of tears? How can I function when the smallest thing can trigger that huge wave of grief to come crashing over me? I did visit Ariella before coming here and asked for a sign. Maybe this is my sign. I don’t know. But it hurts.

No one really knows what to say to a grieving parent. Hell, I don’t even know the right words to say because there are no right words. And that may make it difficult to approach a grieving parent. That may be why grieving parents tend to lose friends and family. Because they stay away because they don’t know what to say. Don’t say nothing. That is isolating for the grieving parent. But be honest. Say “I don’t know what to say.” Say “I’m here for you”. Say “I’m listening.” Say “I’ll sit with you. We can talk or not.” No words are going to give comfort but your presence just might. We used to have a mailman that we talked with regularly. He did our route for years. He knew us and Ariella and always made sure to chat with us if we were outside when he was bringing the mail. He was also my father’s mailman and when my father was in Florida he always checked on him, asked how he was doing. After Ariella was diagnosed he always asked after her as well if he didn’t see her. We hadn’t seen him for a while recently and I guess his route changed. He knew Ariella had relapsed last year but we hadn’t seen him since she went in for bone marrow transplant so he had no idea about the ICU or any of it. One day a few weeks ago David saw him and he asked after Ariella. David had to tell him. The next day he was on our route again and he went out of his way to knock on our door to express his condolences to me. He didn’t say much. He didn’t know what to say. I don’t even think he said as much as sorry. Because he knew. There are no words. He just gave me a hug. And that was all that was needed. I know that had to be hard for him. Many just avoid the grieving parents. But he didn’t. Even though he didn’t know what to say he made sure to be there. To let us know he was there. Even when he didn’t have to.

I know most people are well-intentioned so I didn’t want to do a “what not to say.” But some things have been said to me that really rub me the wrong way. Not only do they not help, but I even found some of them to be hurtful. Things like “she’s in a better place.” I disagree. I cannot conceive of a better place for a child than with her parents. Whatever your beliefs, they are not mine. “G-d needed another angel” or “it’s in G-d’s plans” or any other reason having to do with G-d. Again that is not helpful at all. Because I don’t care what G-d’s plans are. Our daughter should be here with us. To me there is not a single good reason for a child to die. None whatsoever. Nothing about G-d’s plan can make up for not having our daughter here on earth with us. “Everything happens for a reason.” Another nope. Again there is no good reason for a child to die. And say there truly is a reason, to make parents suffer a lifetime without their child until they find out the ultimate reason or plan is not okay. If it truly is G-d’s plan (which I don’t believe) I want to know it right here, right now because this life I’m living, without reason or purpose, is torture. Any sentence that starts with “At least…” There is no single “at least” out there that will make the death of my child worth it. None, zero, zip, zilch. Again, I know it’s well intentioned but it really bothers me when it doesn’t occur to people that my beliefs may be different than yours. I’m not sure how many times I’ve been told that Ariella is okay because she’s with Jesus. We are Jewish, not Christian. Our beliefs about G-d and the afterlife are different. Telling me she is with Jesus completely disregards the fact that there are many religions out there with different beliefs so to just assume we believe the same thing is not okay. Comments like that are not helpful in the least, even if that’s what you believe. I’m happy for people who have strong faith because I just don’t anymore but putting your faith on me doesn’t provide comfort or peace. A simple “I’m sorry for your loss” will suffice.

Finally, if I’m talking about how hard things are or how poorly I’m doing, don’t turn around and make my grief about you. Don’t tell me you are feeling the same way about the loss of Ariella. Because you’re not. Only David can tell me that. We understand that everyone who knows and loves Ariella is sad and grieving in their own way. But it doesn’t compare to what David and I are going through and we cannot carry anyone else’s grief. No matter how much I write, how much I try to explain, no one other than parents who have been through this can begin to really understand how we are feeling. I am exhausted and can only deal with my feelings right now, and David’s. I don’t have the energy to comfort others. Just agree with me that it’s shitty. That it sucks. Don’t try to fix it by using meaningless platitudes or telling me that you feel just as awful. Don’t diminish my feelings by trying to make them go away. You can’t fix it, you can’t make me feel better. I can’t speak for all grieving parents but I do think it’s safe to say that most just want a comforting presence, someone who will listen or just be willing to sit quietly, and who will agree that the situation is horrific without trying to fix it.

I know people who make the above comments are just trying to provide comfort without really knowing the right words. But those comments do not take into account the fact grieving parents may have different beliefs than you. And all any grieving parent wants is to have their child here with them. Nothing else will make it better.

This post is kind of all over. But that’s how I’ve been lately. My mind doesn’t focus on one thing. I get distracted and can’t focus on anything and my mind wanders. I guess I’m just saying this to remind anyone who sends messages or texts, that if I can’t respond immediately I most likely will forget to respond. I’m not ignoring you on purpose. My brain just isn’t functioning well these days. Don’t take it personally.

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Baseball

Baseball games are fraught with memories. From a young child some of my favorite memories are of going to baseball games with my father, including when the Orioles won the world series in 1983. David and I carried on that tradition with Ariella, bringing her to games from a very young age. None of us are huge baseball fans but we always enjoyed the atmosphere of the games. We like the food, the energy, the music between innings, and the overall excitement. So with the memories of the games with my dad, the memories of the games with Ariella, and the memories of the games with my dad and Ariella together, I knew I was taking a risk going to an Orioles game. I also knew that I didn’t want to lay on the couch and stare blankly at the TV while David went to the game. So I told myself it would be okay, we would be among good company, and if nothing else it would get me out of the house.

And it was okay. The company and food were good. Better, the company and food were excellent. Yes there were tons of memories at the stadium but they didn’t take over. That’s the thing, I never know what I will be able to tolerate and what will sucker punch me in the gut until I’m in the situation. But even though the memories weren’t in the forefront, I just couldn’t find myself caring at all about the game or really enjoying myself. To be fair, the attendance was paltry so the energy overall really wasn’t there. In fact David and I were hoping to see the other team pull off a no hitter since the Orioles were playing so dismally. But really, I was just going through the motions. When previously I would dance between innings, get into the music and get into the atmosphere, now I just felt blah. I had no interest in any of it. And Ariella should have been there. I was missing trying to embarrass Ariella with my dancing, missing trying to get her to dance, missing her trying to get on the screen (which she did a couple of times), missing her waving her signs she always made, missing her booing the other team at the top of her lungs. Whereas before I could go to games without her and enjoy myself, now I know what is missing. This is how my life is right now. Just going through the motions. I can’t even fake it. Faking it takes too much energy. It’s too exhausting. And frankly, I don’t want to fake it. I know it may make others feel uncomfortable or awkward but I just can’t care about that. I don’t take pleasure in things I used to find enjoyable. Everything is dull, muted. Things that used to make me smile, just don’t. The pleasure I felt at the golf tournament seems so removed from how I feel overall that it’s hard to believe it even happened. This isn’t living. This is just existing.

Most parents I have communicated with that are further along this journey than we are have said they did start living again. It took a long time, years, but they began experiencing joy along with the sadness. I just can’t imagine that that day will ever come. I don’t know that I want it to come. How can I be joyful in a world where I am missing the most important part of me? But how can I survive with this incredible sadness? Which never will go away. That is the consistent theme among bereaved parents. The sadness never goes away. You just learn to live with it.

How does one survive a lifetime in such despair? I’ve read a lot of books on grief. Some have been helpful. They have been helpful by assuring me we are not alone in this and our feelings are normal. And in many of them you can see the long term and know that overall most bereaved parents end up doing ok. Many of the books I have found are Christian based, which I don’t relate to. Jews have different beliefs on the afterlife and in all honesty I have no idea what I believe anymore. It just devastates me to think that a sweet soul like Ariella and all the other innocent children who have died only get a short amount of time and that’s it. I do like to believe that there is more for them, but do I really believe it? I don’t know.

What I do know is that every experience now is tainted because Ariella is not a part of it. It just won’t be as good as it could have been. We know what’s missing. We will always think that Ariella should be there. How do we live a lifetime like that?

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Angry

I am so angry. Angry at everything. Angry at Ariella’s doctors for not saving her. Angry at science. Angry at medicine because with all they can do, they couldn’t fix her lungs. I am angry that it was Ariella and not me. From the moment of diagnosis to her last breath I begged and pleaded to let it be me. I am angry that childhood cancer is considered to be rare and only receives 4% of federal research funds for all childhood cancers combined. I am angry at G-d and I’m not sure I even believe in G-d but If there is one I’m extremely angry at him. I understand with G-d that there are still bad people because G-d gave us free will. The world wouldn’t be perfect even with G-d. But I really struggle to imagine that there is a G-d in a world where children die from cancer.

I get angry every time I see a post of a childhood cancer survivor. I’m happy for them, of course I am. But I’m angry that my child isn’t there with them. Ariella should be. Her prognosis at initial diagnosis was good. She had everything going for her with a Ewing’s diagnosis; her age (she was 9), she’s a girl, the cancer was localized, and it was in her leg. All indicators that she should have had a good response to chemo. She should have never relapsed. She should have survived. And yet. And as ugly as it is I’m extremely jealous. Jealous of those families even with kids still in treatment because their children are alive. Jealous of happy, healthy families with no significant worries. Again of course I’m happy for them. I wouldn’t wish this pain and heartache on anybody. But I’m angry that our daughter was taken from us. I’m angry that we lost our roles and identities and our carefree existence. And I’m angry every time I hear of another child dying or being diagnosed with cancer.

Someone close to us was just diagnosed with prostate cancer. I’ve been taking him to his appointments and been a source of comfort throughout this. I’m glad to be able to be there for him but I am so angry that cancer has touched us again already. Thankfully it hasn’t spread and is treatable. But it never ends.

I am angry and irritated with the people that complain about petty problems. Today at the locker room in the gym I listed to a lady rant about how someone parked for a good 5 minutes, dropping the f bomb left and right. I wish my problems were so minor that I can get so worked up about how someone parked. I see it all the time, people love to complain. They can’t see how blessed they are. And that makes me angry. Even though right now I feel the farthest thing from blessed, I was blessed to have the opportunity to be Ariella’s mom. I’m angry that people don’t realize what’s truly important in life.

I am so grateful for the outpouring of support that I am still getting. But I am so angry at those who should have been the first to reach out and the ones that should continue to check on us, that haven’t since Ariella’s funeral. I know I should let them go, not waste my energy on them but it’s hard when you are going through most horrific experience anyone can go through and those you expect to be there for you aren’t.

And finally I’m angry that this is me right now. I don’t like this version of me. I don’t like being angry and jealous and bitter. It’s so much to carry along with the sadness, which is crushing. My whole body feels leaden, weighed down with all of these emotions. Sometimes the emotions are so powerful that they literally bring me to my knees. And it’s sad and scary and overwhelming to imagine the rest of my adult life like this. I still beg everyday for something to take me, to end this pain, and reunite me with Ariella.

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Blue Orbs and Breakdowns

In my previous post about signs I forgot to mention the blue orbs. When we went to Jamaica two days in a row there was a rainbow circling the sun. In the pictures both days there is a blue orb. Some time about a month later at home I again saw a rainbow around the sun. And in the picture there is a blue orb.

I heard all sorts of different explanations for the orb. Some were quick to explain the scientific reason orbs may show up in pictures. Something about the light and dust and angle of the camera. Others truly believe that the orbs represent spirits trying to communicate with you. Blue orbs supposedly indicate spirit guides or a guardian angel. I have taken many pictures of many rainbows and sunrises and sunsets and not once have I had these show up in pictures until after Ariella died.

Ariella’s friend’s mom sent me some pictures yesterday she took of her daughter. Her daughter was talking about Ariella, about how they would have danced with the fountains together, right before these photos were taken. In every picture she took of her daughter, the orb was there.

She too has taken many pictures at this place and never once seen these in the pictures. As I mentioned in my previous post, I’m skeptical about signs but this does give me something to think about.

On another note, my safe place wasn’t so safe today. I’ve finally been going to the gym or running fairly regularly but today at the gym I was triggered by a song. I had to go in the locker room and have a good cry for several minutes. And that’s why I get so hesitant to go out. I never know what’s going to trigger me. Well right now everything is a trigger. Everything either reminds me of or makes me think of Ariella. But in this case it hit much harder and I couldn’t hold it back. After several minutes I was able to pull myself together and finish my workout. I just hate knowing that this could happen again at any time, even in public.

Going out alone right now is like walking through a minefield. I’ve only really been to the grocery store or post office by myself. Post office was generally okay but the grocery store has been difficult. I am worried about running into people, mostly people I don’t know well. I’m worried about having to talk to people if I’m not up for talking. I’m worried about having to tell someone who doesn’t already know. I’m worried about being triggered and having another public breakdown. I feel like I’m tiptoeing through the store, peeking down each aisle to make sure it’s safe. Have to dodge all the potential bombs. It’s exhausting. Forget about going to stores like Target or other retail shops. Just the thought makes me panic. The people, the lights, the noise, all the items I would buy for Ariella, it’s all so overstimulating and the thought of it alone is enough to raise my heart rate.

The other issue I have is my distractibility. I lose focus very easily so I find myself in the store staring off into space or just stopping in the middle of an aisle. It’s hard to find what I’m looking for on the shelves and I just feel so exposed. It’s crippling.

Some days it’s not even minute by minute. Some days it’s second by second.

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Signs

Two months. Two months she’s been gone. Two months filled with heartache and despair. Two months of quiet, of emptiness, of earth shattering sadness. I have minutes, even hours where I may feel okay. Especially when at the gym or running. But then. Then the grief wave hits me and knocks me to the core. I feel it physically, in my stomach, in my head, in my bones. Reminds me that this empty, quiet life is forever. Forever is a long time. Forever is too long. I’m two months away from my daughter. But two months closer to death.

I was never one that believed in signs. What others viewed as signs I viewed as coincidences. But now I desperately look for signs that Ariella is present. Rainbows. We had a lot of rainbows after she died including the day after at our house and again at the shiva house. We even had a couple of rainbows in Jamaica and then greeting us when we came back from our trip. Are they signs? Or would they have happened anyway?

When Ariella was in the hospital she painted this picture. I don’t recall if it was before or after bone marrow transplant but it was before the ICU. Ariella picked the quote from the song Three Little Birds. She believed everything would be all right. After she died I got a tattoo with the 3 birds. The other day I was walking our dog and saw three little birds in a line on the ground in front of me. Was that a sign? Or just a coincidence?

Ariella participated in a program at the hospital called Beads of Courage. For every treatment, every procedure, every needle stick, every transfusion, etc. she received a bead. The color and shapes each represent a different procedure. The last bead she got was the butterfly. That’s the bead for gaining angel wings. I got that butterfly tattoo on my foot.

The beads in the jar are from Ariella’s treatment at Sinai, including initial relapse treatment. The ones in the bowl are from her time at Hopkins, February to May.

So back to the butterflies. Butterflies in general are often viewed as signs from a loved one. But there are butterflies all over the place in the summer. How can that be a sign? They would be there whether or not a loved one had died. But five days in a row big butterflies flew around me and landed nearby. Three times I saw a bright blue butterfly and once I saw a yellow butterfly.

So I question once again, coincidence, or signs?

Other possible signs. Ariella always tried to catch 11:11. She often missed it but when she did catch it she always made a wish. Soon after Ariella died I often saw 11:11 without trying. I also saw 1:11 quite a bit. Recently I often look at the clock and see any hour with 11 minutes, like 8:11, 3:11, etc. Does 11 mean something? Do ones? Maybe I just notice it more now. Clouds too. Ariella and I loved seeing shapes in the clouds. But since she died I see shapes constantly that remind me of her; unicorns, a bear, a butterfly, the letter A, three little birds. Does that mean something, or is my mind wanting to see those images and I’m seeing something that isn’t really there? Ariella loved to draw, color, paint, and create things with clay. I do like to think of her using the clouds as her new medium for artistic expression. I can just imagine her drawing with the clouds and molding them to form her shapes. I can also imagine her getting frustrated with it since clouds aren’t stationary! I can just hear her grumbling in frustration that the clouds weren’t staying where she put them.

Finally, our dog. We adopted our dog, Sherman on June 4, close to a month after Ariella died. Sherman spends a lot of time in Ariella’s room by himself. He takes his toys out of the basket and brings them upstairs to her room and leaves them there. If I put them away he immediately takes at least one out and brings it back upstairs into her room. Does he know something we don’t? Does he sense her presence? Or does he just like that space?

I’ve been reading books on near death experiences and I like to believe that they are real. But I’m skeptical. I would love for the signs and the experiences people have had to be real. That means her presence is around and we will be reunited some day. But it’s hard for me to really believe even though I am constantly seeking signs. It just makes it even harder to think 11 years is it for her. That it’s over, done, nothing else. So are the signs I’m seeing real, or imagined because I need them for comfort? Who knows? I would love to hear about signs you have seen after the loss of a loved one. Or if you had a near death experience, I would like to hear about that too.

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Ari’s Bears

For those that may not know, I’ll give a little history about Ari’s Bears. When Ariella was in treatment initially she received all sorts of packages and goodies from various organizations. The gifts she received helped her get through the tough days. She was particularly inspired by Jessie Rees, a girl who had DIPG, but still wanted to help other children fighting cancer. She did so by creating Joy Jars that were stuffed with various toys and things such as earbuds and socks and all sorts of fun items. Ariella looked forward to receiving her Joy Jars and decided she also wanted to make sick children feel better. She had the idea to go to Build a Bear, make bears, and deliver them to children in the hospital. Instead of birthday or Chanukah gifts she asked for gift cards to Build a Bear. She earned points for tough treatments in the hospital and redeemed those points for Build a Bear gift cards to make bears for other children, instead of getting something for herself.

We started small, just by bringing bears to her clinic appoints and hospital stays. But Ariella really wanted the foundation to grow so we became a Founding Hope Fund under the American Childhood Cancer Organization. Ariella hand delivered bears to 8 local hospitals and respite houses and mailed many out of state. It was so great to see the joy she got by making the other children happy. Even when she was inpatient in the hospital she brought bears to distribute. And every weekend she wanted to go to Build a Bear to make more bears. She loved bringing friends along and we especially had fun dressing them and picking out cute accessories.

When Ariella died we knew we had to continue with Ari’s Bears, as hard as it may be for us. Ari’s Bears is her legacy, it’s what she will be remembered for, her impact on others. And it is hard to continue with Ari’s Bears, but it would be impossible not to continue. We are growing, and in the process of filing paperwork to form our own non-profit rather than stay under the umbrella of the American Childhood Organization. It’s heartbreaking that Ariella is not alive to realize her dream of having Ari’s Bears in several states. It’s devastating that she will never fully realize the impact she had on people. It feels wrong to do Ari’s Bears without her but I know she would be angry if we didn’t. And again, it was her passion, her idea, and we need to be sure her legacy lives on.

Today I went with a friend and some girls to the hospital where Ariella was initially treated, to distribute bears. I thought it would be impossible to step through those doors, but it was okay. Though Ariella had some rough times in that hospital, we always knew there was an end in sight. And she actually had some enjoyable times as well. Even going in the playroom was okay. She had a lot of good moments there, playing foosball, watching movies, doing crafts, playing games, and chilling on the waterbed. We spent so much time in the hospital that we got used to it, it felt comfortable, and we managed to make the best of a bad situation. But being there giving out bears without her, that was hard. She should have been there, setting up the bears just so (she was very particular about how she set them up). She should have been there, sharing her story, instead of me. She should have been there, challenging me to a game of foosball while we were there. Being there, without her, was so incredibly difficult. Only made up for by the joy we brought to the children.


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Exercise and Routine

It never ceases to amaze me how long it takes to get into shape, and how quickly we fall out of shape. I used to exercise daily either by running or going to the gym. I used to love running and was actually pretty fast. I hadn’t exercised since Ariella was in the PICU. Even though I was home some nights and still working part time I was too exhausted to drag myself out of bed to get to the gym before work. You see, nights in the hospital were not conducive to sleep. Nights were fraught with beeps and alarms, vital signs and transfusions. Some nights the lights had to be kept on and doctors were in and out throughout. So even though I did actually get fairly good sleep at home it was not enough to make up for the lack of sleep when in the hospital. After Ariella died I wasn’t motivated at all to do anything, much less exercise. I honestly didn’t care about taking care of myself. What was the point? Nothing mattered.

I finally decided that it was time to do something. Even though I don’t much care right now about my health I realized down the road I just might and would regret not taking care of myself earlier on. So a couple weeks ago I forced myself to go to the gym. Not necessarily on a regular basis but to try to get back into a routine. The gym is actually one of my safe places. I don’t know many people there and those I do know, know my situation and will ask how I’m doing but stop there unless I pursue it further. I’ve been doing some classes at the gym and it’s actually quite therapeutic. It’s an hour or so of distraction from reality. And it also helps to kill time. By the time I roll out of bed and get myself together, take our dog for a long walk and then go to the gym, I’ve managed to get through half a day. I’ve been running twice. I am nowhere near where I was when I was running on a regular basis. I think part of that is because I hadn’t exercised in a while, but I’ve also noticed that since Ariella died my heart rate and respiratory rate are higher. And sometimes I find it hard to breathe. Stress and grief impact your physical condition and that combined with an increased heart rate from exercise makes it quite difficult. But again it’s therapeutic. So I will keep trying.

Though it helps to have the structure and routine and to get out of the house for a bit so I’m not lying on the couch all day staring at the walls, it also saps my energy and at times makes me panicky. There comes a point anytime I’m out that all of a sudden, I’ve had enough. I need to be home. I’m careful about what I agree to do because I need to make sure I have an escape if I need one. I’m worried about going back to work because of this. On the one hand it will be good to be able to fill my days but on the other hand I’m terrified that I will breakdown and not be effective at my job. I have a very hard time concentrating on anything and I can only hope that work helps channel my attention into the job so I’m not so distracted by life.