Tag: children

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The Days Keep Dragging

Another calendar month has come and gone. People keep remarking how fast the summer is flying by. For me it’s dragging. Every day is a lifetime filled with nonstop thoughts of Ariella. The thoughts change but are always about Ariella. About what we are missing. About how much I miss her. About how much I want to hear her voice and tell her about my day. About her days in the hospital. About what we could have done differently. She is all around me. Everything is a reminder. And I mean everything. Nothing is safe. She is a constant in my life no matter what I am doing or where I go. Some thoughts are happy memories though they make me sad, and some are tragic. Doesn’t matter. I can’t escape them. 24/7 I am missing my daughter. I count down the minutes until I can go to sleep once again. I survived another day. But then I wake up. Another day to get through. I force myself out of bed. I run or go to the gym, the only thing that remotely helps me right now. And I try to fill the rest of my day until I can sleep again. The summer can’t end soon enough. I’m anxious about going back to work but at least my days will be filled. I’ll have a routine. I’ll have no choice but to get out of bed. I’ll have no choice but to keep myself busy at my job.

Work though is going to bring its own set of worries. I work with children. Everyday I’ll interact with children near Ariella’s age. I will watch them learn and progress and grow. Some of my students I’ve known for several years. They know I have a daughter. They ask about her. They didn’t know she was sick. How do I respond when they ask about her now? Some of them are the same age, in the same grade Ariella would be. How? How am I going to watch these kids learn and experience all the things Ariella will never get to experience? I love my job and I love my students but this is going to be a real test. And not just the interaction with the kids, but interaction with the staff as well. I work in multiple schools so I don’t get to know staff at any individual school very well. But they are aware of the situation. I am mostly in the same schools as last year so I am dreading the first week or so back, having those conversations with people I don’t know all that well. I just hope that it’s far enough out that when they see me it’s not immediately on their minds. I am relieved to be in the same schools because the thought of adjusting to new schools on top of everything else was increasing my anxiety about going back. At least I’ll be dealing with the familiar (other than one new school).

I’ve got a little over three weeks left to fill before I go back to work. I’ve had so many offers for lunch, dinner, etc. and I appreciate them, I really do. I can’t accept them all. While doing nothing isn’t good, doing too much isn’t good either. I pay for it later. Interacting with others is exhausting. Making small talk is exhausting. No matter who I’m with it always hits me what I’m missing, what our lives are missing and as soon as I leave, the world comes crashing down yet again. I’ve always been introverted and even more so now I prefer to be alone most of the time. It’s actually quite the conundrum. I want to be alone but I need to fill my days. I don’t want to just mindlessly stare at the TV all day but I don’t want to go out and do much of anything. Nothing is the right thing so I am trying to find that right balance of not shutting myself completely off but also not exerting myself too much.

I never understood depression before. Anxiety and I had/have a very close relationship, I know anxiety quite well, but was not so familiar with depression. I just didn’t understand how life could feel so bad that one would have no motivation to do anything or be able to take pleasure in various experiences and activities. It made no sense to me. No matter how bad things seemed there was always pleasure and happiness to be had along with the bad times. I get it now. The root of the depression may be different, mine being situational, but I fully understand lack of motivation and being unable to experience joy. It is a dreadful way to live, feeling like there is no reason to keep on going. What is the point of living without happiness, meaning, or purpose? Why suffer through that? If anyone has the answer to that I’d love to hear it.

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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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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.