Author: stein28

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Desperation

Each day I feel more and more desperate.  Desperate to have my child back.  Desperate to have our perfect family back.  Desperate to have our complete family back.  Desperate to find something, anything to help me not feel this way.  I’m crawling in my skin trying to figure out how to function when I can’t have what I want most in the world. It feels like the walls are closing in yet I have no motivation to get out.  Nothing brings me joy or pleasure.  I can be distracted at most for minutes at a time but the memories and thoughts come rushing back in and I’m devastated and desperate once again.  

I was remembering the other day something Ariella said years back.  She was probably about 5 or 6.  Some times she did say she wanted a brother or sister but she didn’t say it often and this one time I’m remembering, out of the blue she said “I love our family. It’s perfect.” And it was perfect.  Until we actually had Ariella David and I thought we would have at least 2 children.  But we had Ariella and our family felt complete.  And it felt perfect.  I loved our family of 3.  We had our moments as all families do but mostly we were a very close family that enjoyed spending time together.  We had dinner together most nights if she wasn’t at the dance studio, we had family game or movie night at least once a week, and we could talk to each other about anything.  We had everything we needed.  What do you do when you are missing something that is a part of you, that you can never get back, that made you whole?

No matter what I am doing, who I am with, thoughts of Ariella are constant.  Some are memories of happy times, some are more recent, but most are just about how I wish she was still here to share my moments with me.  Or heartbreak because of the things she will never get to experience.  Everything is a trigger, a reminder of life without our perfect, beautiful, child.  Last night especially.  We had our first board meeting for Ari’s Bears in the process of becoming our own non-profit.  She should have been there.  She should have been running the meeting.  I know she would have had incredible ideas none of us thought of.  It’s so hard to continue this without her.  But it’s impossible not to continue it.

The point of this blog is to truly express what life after losing a child is like.  And it’s extremely dark.  Every day I beg to die.  I DO NOT HAVE SUICIDAL IDEATIONS.  But I no longer fear death, in fact I would welcome it.  I do not want to live in this world without my daughter in it. The pain is too great. Missing her and never getting to see who she would become.  In talking with bereaved parents who have other children, they too have said they feel the same. And that if they didn’t have to for their other children they too don’t know how they would go on.  But we do go on.  We exist.  But it is just existing.  It’s not living. Parents further out promise that one day, years from now we will learn to live again, experience joy along with the sadness.  But do you know how daunting that is?  It’s not even been 7 weeks and I just feel so hopeless and shattered and sad.  Maybe one day I won’t feel that way but this existence right now is pure hell. 

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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?