Tag: cancer

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It Keeps Happening

Two posts in one day. Well I actually wrote the stones post yesterday, just didn’t post until today. I write because I just don’t know what else to do. I don’t want to go anywhere, I don’t want to do anything, I can’t concentrate on books, so I have to do something. I have so much I want to say, need to say but I can’t actually say it. So I write it. I know that so much of what I write is repetitive but that’s because nothing has changed. I’m still in this dark, dark place with no signs of emerging from this black hole of despair. I’m still at a loss as to how to go on living, functioning in this world without the person that completed me, completed us, completed our family.

It took a long time to come to terms with the fact that Ariella had cancer. It was surreal, it never felt like that was our real life. It was like living in an alternate reality. Even when she relapsed it was so hard to believe that we had a child with cancer. It was simply unfathomable. We did everything we needed to do but it was impossible to believe that was our life. Things like that didn’t happen to us. We were so fortunate and happy. We had a fiercely independent, sassy, smart, kind, and beautiful young girl who was rarely ever sick. Cancer and illness happened to other families. Not ours. Of course we thought she would beat it. You always think your kid is the one that’s going to beat the odds, the one that’s going to make it. Sure cancer is horrible but we would get through it and all would be fine again. So imagine how hard it was to come to terms with the fact that she died. I still find myself hoping that this is just a horrible, horrible nightmare and that I will soon wake up. How can this be real? How can this be our life now? What’s really sad to me is that I have gotten used to not having Ariella around. Actually, that’s not true. I’m still not used to the quiet. I miss her noise, miss the evidence that she is there, miss the activity, miss her running through the house and her larger than life spirit. I’m not used to that at all. But I no longer expect her to walk in the room any minute. I no longer pick up my phone to send her a text or show her a cute or funny picture or video I saw on Instagram. I no longer pull out 3 plates when serving dinner. I do still talk to her about my day but I no longer expect to hear her answer. And that makes it all the more real that she is never coming back. That we have to live the rest of our lives without her. That this is our new, shitty, reality.

Early this morning another little girl we know died. Different cancer but similar story to Ariella (though this girl had been fighting cancer for much longer than Ariella). They were in the hospital together with bone marrow transplants just a few days apart. This girl, like Ariella, had complication after complication, setback after setback. Tiny baby steps forward and huge steps backward. Earlier on in their hospital stays her mom and I would talk about the day they would both be out of there, how they would celebrate, and the stories they would share. How even though they had at that time only seen each other in passing we knew they would have an incredible bond with everything they both had been through. Be careful what you wish for, right? They both made it out of the hospital, not in the way any of us wanted. They are both together (I hope, still not sure what I believe) but again, not in the way any of us wanted. It hurts that much more that neither of the girls survived. My faith was shattered when Ariella died. But I did retain some hope that this little girl would make it. I checked Facebook daily for updates. Clung to that glimmer of optimism when she seemed to be making some improvements. Felt every bit of devastation with each setback. One of them should have made it. They both should have made it. My heart breaks even more each time I learn of another child dying, whether I know them personally or not. I don’t understand this world. I can’t make sense of it. There is no sense to be made. None of this is okay. None of this will ever be okay. I don’t understand why kids keep dying. This shouldn’t be happening and my heart cannot take it. But I continue to follow the kids’ stories. I continue to check on them daily. Because the stories need to be shared. The children need a voice. The parents need support. As long as people continue to look away kids will continue to die from cancer. It’s hard to see. It’s impossible to watch. Stories are often not shared. There is not enough awareness. I was blissfully ignorant until my child was diagnosed with cancer. Never thought it could happen to us. I will not allow that ignorance to continue. Our children are worth more than that. And one day it just may be your child. As much as it hurts I will not turn my back on kids fighting cancer or their families. They are my tribe. And if the unthinkable happens I will be there also with my arms wide open.

The difference between this girl’s mom and me is her mom’s seemingly unwavering faith (though I do not know if her faith has been impacted by her profound loss). I am jealous of people who continue to have faith even in the darkest of times. Faith gives them something to grasp, serves as a comfort, knowing for sure they will one day be reunited with their child. This does not take away the immense pain they have without their child beside them here on Earth but I guess gives some reason or purpose, some meaning, some hope, knowing they will one day see their child again. I wish I could have that kind of faith. Make some sense out of the senseless. But I just don’t. I just don’t have faith that a greater being or higher power would allow innocent children to suffer and die. So here I am, still trying to figure out some meaning or purpose to this new life I am living.

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Regrets

There’s not a whole lot in my life that I regret.  Even before Ariella was diagnosed with cancer we tried to live life to the fullest.  We spent time together, went on vacations, played games, imaginary play (so much imaginary play which I did not enjoy but would give anything to have her begging to play with me now).  Sure we were busy and had to do the regular day to day stuff but family and home always came before work for both David and me.  So I can’t say that I regret not spending more time together or saying I love you more or giving hugs, or things like that because I always did.  I have always known life can change in an instant from losing friends in high school and college and somewhat unexpectedly losing my dad (he had heart issues but I certainly didn’t expect him to die when he did).  I never wanted to be the person who regretted missing time spent with loved ones.  And I wanted to spend as much time with my girl as she would allow.  I always used to joke with her that one day she wouldn’t want me always around, that she would get annoyed with all the hugs and kisses and not want to sit on my lap.  She always disagreed, saying she would always want hugs and cuddles and to hold my hand, and it was true, even at 11 she often held my hand when we were out, she loved to cuddle together in bed, and had not reached the phase where she didn’t want to be seen with her parents.  We certainly saw the pre-teen attitude and eye rolls but mostly Ariella liked having us around.

Once she was diagnosed of course we saw things differently.  We always thought she would beat it but of course the thought was always there, what if she doesn’t survive?  So we did even more. Gave her as many experiences as we could.  Said yes to all the opportunities that came our way.  We did not put her in a “bubble” in between rounds of chemo and instead let her go to the dance studio, have sleepovers, go to Build-a-Bear of course, and do all the things a 9, 10, 11 year old should do.

So no regrets with how we lived our lives and spent our time before and after cancer.  But I do have a couple regrets and they are big ones.  I regret not trying to cuddle more with Ariella when she was in the ICU.  It was pretty challenging because of the vent and tubes and they said I could not lie in bed with her (I regret not fighting that too) but we both were aching to give each other hugs and just couldn’t.  I regret not trying harder to give her physical comfort.  I regret not trying harder to wake  her to hear me when she was so sleepy but not yet under actual sedation so she could hear me tell her I love her and goodbye every time I left the room, especially to go home.

But the biggest regret, and I know I am going to get all sorts of arguments and comments about this, is choosing to do the bone marrow transplant.  It was not guarantee of a cure, it is not standard treatment in sarcomas (it was a trial), and she was currently no evidence of active disease and having a good quality of life.  Of course we don’t know if the meds she was on would have kept the cancer at bay but I am certain she would have lived longer and would have had a better quality of life.  If she did decline due to cancer we would have actually been able to tell her goodbye, she could have told us her goodbyes, we could have gotten more hugs and kisses. She could have been made comfortable but maybe not as scared. Instead she had 2 of the crappiest months a child could have, only being able to communicate by writing, not being able to eat or drink, being uncomfortable with complication after complication, not being able to say goodbyes or know or be aware of the love that was surrounding her at the end.  She was scared she was going to die.  We never promised her she wouldn’t.  But we redirected and instead just tried to reassure her that that the doctors were doing everything they could. While of course we were worried about the same thing. Cancer is traumatic.  A dying child is traumatic.  But there is so much more trauma with the way that Ariella died than I can ever put into words and I will never not regret doing the BMT and nothing anyone says will change my mind.  The 3 of us walked into Hopkins together hopefully optimistic that the BMT would keep the cancer from coming back.  But only 2 of us walked out.  Wasn’t worth it.  It’s this, this is what plagues me a good amount of the time.  The actual medical and emotional trauma Ariella went through and that we went trough watching it. The not only not being able to help or comfort your child but feel like you’re the reason she’s in the pain and discomfort. I know we made the best decisions we could at the time given the information we had and we thought we were acting in the best interest of Ariella and everything else everyone is going to say about blaming ourselves.  Intellectually I know it.  But the regret will always be there.

As I said at the start, I don’t have a lot of regrets.  But I can’t let go of the one I do have.  And I’m sure I never will.

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Ordinary

It’s a beautiful summer evening. The type of night Ariella would be outside riding her scooter or bike or playing with the neighbors.  The type of evening we would have to argue with her when it’s time to come inside.  We would be outside with our neighbors all watching our children play. Maybe (definitely) having a glass of wine or a beer. Such an ordinary night in such an ordinary neighborhood and there is nothing ordinary about it.  I love watching the kids outside play but it also pierces my heart.  Because my kid should be out there with them.

The other day a boy knocked on our door.  He was an elementary school friend of Ariella’s, younger than her so they were not in school together this past year.  Anyway, they hung out outside together a lot when the weather was nice, mostly last summer.  Once school started in fall and they were inside more or at activities so they didn’t really see each other.  In all honesty he probably didn’t even know she was sick. Other than her bald head which was usually covered outside she certainly didn’t look or act sick. And actually thinking back she had hair when she hung with him.   So he knocked on the door the other day asking if she was home and could come out and play.  I had to tell this boy, this 10ish year old boy that probably had no idea that anything is wrong that she had died.  In our ordinary house in our ordinary neighborhood and shatter this boy’s ordinary existence.

We haven’t been ordinary since February 2017.  But we got used to it.  There was an end in sight.  Our new ordinary became ordinary but that was because of Ariella.  She never let cancer get in the way.  Even through relapse, we could almost feel ordinary.  Because she wasn’t in the hospital every other week and she was able to swim and go on vacation, dance, and go to school.  Her life was interrupted and out of the norm but not like it was when she went through treatment the first time.  Hell she relapsed in June and between that previous April and October we went to Disney, California twice, Ocean City, and North Carolina.  So actually that’s not ordinary but that’s the kind of extraordinary we like.  What I would give to just be ordinary again.

I always hated the expression the “new normal”.  But that’s what we had when Ariella was diagnosed.  I don’t think that changed when she relapsed, I think we were still in the same “new normal”.  But this, I cannot imagine this ever being our new normal.  What I would give to just be ordinary again. 

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Here I Am

I don’t claim to be an amazing writer but I have always found writing to be healing and maybe my publishing can help me and others at the same time.  For those who don’t know me my husband and I just lost our 11 year old daughter, our only child in May from cancer. Well actually from the treatment.  She had complications from a bone marrow transplant which ultimately led to respiratory distress and kidney failure.

Ariella died May 9, 2019 and here more than 6 weeks out I still can’t quite believe she is gone.  I still can’t believe I’m never going to hear her voice, her laugh, feel her arms around me, argue with me. 6 weeks is not a very long time but it’s a lifetime when you have a huge part of you missing that can never be replaced.  When Ariella died we not only lost our world, but our identities, our active daily roles.  People keep reminding us that we will always be Ariella’s parents and she is always here with us and her legacy will live on.  Frankly that’s little comfort.  We are not parents in the way we want to be, need to be, the way we should be. We are not running a child around to her activities, making sure she does her homework, taking trips together.  We don’t get to witness milestones like having her Bat Mitzvah, getting her driver’s license, graduating, becoming the nurse she always said she wanted to even after everything had gone through, getting married and having a family of her own. She always said she wanted 5 kids!  So yes, we may always be her parents but we are no longer parenting and we’re missing out on most of it.  I can’t speak for David but I feel as if all my purpose is gone. My reason for getting up, getting out of bed each day, all of it.  None of it matters. I don’t find joy in the things I used to.  People who are much farther along this grief journey (grieving a child they lost) have said they did eventually feel joy and happiness along with the sadness.  However that seems so far away from me right now and it’s everything I can do just to make it through the day.  I can’t imagine being happy in this world without Ariella present.

As for her always having her legacy, that’s true too.  David and I can assure she won’t be forgotten by continuing Ari’s Bears.  That gives us reason to continually talk about her.  But it’s so bittersweet because she is not here to see what she truly started.  Ari’s Bears was her passion and she never will get to see it reach its true potential. I absolutely love that her friends want to continue to spread her mission but it is also so painful that they are not doing it alongside Ariella.

People keep asking how I am and they are asking in a sincere way.  They truly want to know. The truth is I’m awful.  I have had few moments of smiles and even laughter but they are short-lived and while I had forced myself to get out a bit even that has been next to impossible lately.  Each day gets  harder and harder.  Some days it really is just too much for me to even reply to text.  I will forever be grateful for the support I have received and will say that support from “strangers” on the internet has forever surprised me.  But I’m also disappointed by how quickly support from some has waned or even disappeared.  What people need to understand is that parents who have lost a child are going through something no one can possibly understand unless they have been there.  It physically hurts and sometimes as I said we can’t make ourselves get out, or text, or answer the phone but it still helps to know we are being thought about.  So to those who continue to always let us know your presence, and you know who you are, thank you.  Please don’t stop even if it is some time before I reply or agree to do something. 

If people want to know truly how I am feeling, and how are are moving through this as a family, feel free to read.  I’m writing mostly for my own benefit.  I started 2 weeks after Ariella died by writing letters to her but there are some things that I don’t want to say to her.  I’m not looking for advice or platitudes, just trying to figure out how to get my feelings out there so I don’t constantly feel like I am crawling out of my skin.  And maybe this can help someone else too.  Who knows?