Tag: Build a Bear

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It’s Okay that you’re Not Okay

My sister-in-law has been searching for a way to help. She doesn’t live local to us and she knows words are pretty meaningless. But that doesn’t stop her from texting to let me know she’s still here, and I appreciate that more than I think she realizes, especially since I don’t always respond. She recently sent me a book that I found to be pretty helpful. It’s called “It’s Ok that You’re not Ok” by Megan Devine and it’s different in that it is helpful for the person who is grieving, but is also helpful for those who are trying to support the grieving person. It’s not specific to child loss but this book doesn’t need to be. There are practical tips for trying to relieve some suffering, and she makes a significant distinction between the pain and suffering. The gist is that the pain is not going anywhere. It’s here to stay. But the griever can try to reduce some of his or her suffering.

The book follows the premise that society and our culture want to fix everything. Humans don’t want to see others in pain. “Healthy” people are happy, motivated, enjoy life. There is something wrong with you if you can’t get beyond the pain of the loss, if you’re unhappy, if you are withdrawing from people and life in general. This book negates that. This book is trying to change our view as a whole on grieving and loss. Rather than perpetuate the common thoughts and cliches the author of this book makes it clear that none of it is okay, that it never will be okay, that how you want to deal with it is okay, and it’s about the griever, not those trying to support them. She does not encourage staying in the dark period forever but she is also realistic that it’s unlikely for someone who experienced a significant loss to one day go back to having a “normal” happy life. She encourages trying to find that middle path, trying to go back to living with the grief rather than trying to overcome it.

This book really resonated with me. Her strategies for trying to reduce the suffering are doable and some that I am already incorporating (writing and exercising to name two. She actually offers an online course “Writing your Grief” which is intriguing to me but the price is a bit steep). None of what she wrote was surprising to me. I felt like she was reading my mind. But it’s encouraging to know my thoughts and behaviors are okay and to be expected. I like that she didn’t paint a rosy picture at the end of it all. Because I wouldn’t trust that. I like that she is realistic and normalizes the experience of grieving. And I like that she is brutally honest that profound loss forever changes you and despite what any of your supporters may say your goal should not be to go back to the person you were before the loss. That will never happen.

The reason I am mentioning this book here is because so many people say they wish they knew how to help. I think their idea of help is to help get rid of the pain, help the griever move on. That isn’t going to happen. But it does offer concrete ways to provide support. The first couple parts of the book explain what is going on in the mind and body of someone who is grieving and why they may react certain ways to those trying to help. The third part of the book has a chapter for the supporters. It will help the supporters provide comfort and help more effectively but also remind them that if they are rebuked it’s not personal. For those that want to try to understand a bit more I encourage you to pick up this book. The author also has a site and Facebook page, Refuge in Grief.

I have mentioned before that so far I am fortunate that my supporters have met me where I am. No one is trying to push me out of my safe places and they all are following my lead. Today for example. I had rallied some of Ariella’s friends to go to Build-a-Bear and use up some of the gift cards she had received to build up our inventory for Ari’s Bears. When David and I got there to meet her friends I could not set foot into the store. We had been there so many times with Ariella and her friends and I just couldn’t do it without her. We had so much fun in the store. Selecting the different animals and dressing them in the perfect outfits and accessories. Sometimes we were there for several hours. The staff and managers knew her. We had met strangers in the store who donated to us on the spot when they heard about what we are doing. Many weekends were spent making bears. That was what she wanted to do. I don’t know why I was able to go to the hospital to deliver bears but Build a Bear did me in. There is no rhyme or reason to it, no predicting what will be impossible and what will be okay until I’m in it. But the point is that my friend whose daughter was there sat with me outside the store, didn’t try to encourage me to go in, and was just there.

I really hate this life I’m living right now. I don’t like being crippled by the idea of going into a store. I also don’t like how exposed and vulnerable I feel when I am out. The pain is ever present but on the other hand it doesn’t feel right that the pain should ever soften. How can it? The person who completed me, completed our family has died. How does the pain of that ever go away, or even soften? I don’t want to live with this pain forever but I also don’t want it to go away. The pain is my strongest connection to Ariella. It’s real, it’s tangible. Relief of some of the pain seems like a betrayal. But living a lifetime like this is not feasible either. There is an extremely long, windy, and rocky road ahead of us and I just don’t know how I’m going to make it through.

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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.