Jesse Alswager’s Cause Of Death
Editor’s Note: Jesse Was Here – A Program of Beyond Type 1 was inspired by Michelle (Alswager) Bauer’s experience after her son Jesse’s death. Michelle’s unwavering commitment to the type 1 diabetes community + her support for others is the basis for this program supporting + building community for those who have lost someone to type 1.
February 3rd— 6 years after
When I first sat down to write this article for Beyond Type 1, I decided to do a simple Google search on myself to see if I had ever offered advice on the subject of losing a child to type 1 diabetes (T1D). To my alarm, as I scrolled past the columns and stories about me from the last six years, Google itself told me what others have searched for most often when searching my name:
“Jesse Alswager cause of death”
I’m trying to adequately describe the feelings that coursed through me—the thoughts, the pain, the memories—my first reaction, honestly, was anger. It felt intrusive. Is that what people want to know most about me, my life, my work and my family? Those details are for my family to know, understand and try to come to terms with. I understand why you want the answer. I need you to understand why I’m not sharing it though.
The news spreads quickly in the Diabetes Online Community (DOC) when we hear yet another life is lost to T1D. Your initial fears escalate—you want answers. You want to know how to protect your child. You want to be able to have a handbook of what not to do, so your child will be around for their 16th birthday. Their first date. Their first love. Grandchildren. You want to reach out to the family who lost—even if you don’t know them, you feel some kind of empathy for this family because after all, you have a child with type 1 diabetes and this family is living your worst nightmare. In fact, you want to say to them via their funeral home condolence page or their Facebook page, “‘I understand your pain because I have a child with T1D.’”
If you don’t know them, here is my advice:
- Let them be. These people are breathing in and out only. The pain these families are feeling is more than you can imagine. Let those close to them be the ones to grieve with them.
- Don’t gossip. Don’t write all over Facebook or other forums of the DOC, “I wonder what happened. Has anyone heard?” I guarantee—GUARANTEE—that the parent will see what you write, and your words will cause them more pain.
- Don’t make this about you. Your post for example that says your child has T1D and they are living your worst nightmare is really about you. Because you have to understand the person receiving that message would do anything within their power to hold their child, to poke their finger, to smell insulin in their house. So don’t compare yourselves.
- When they are ready to share their story publicly, listen. Not everyone who loses a child wants to share. Because as we’ve all heard, “Everyone grieves differently.” So if they choose to share via a blog, a Facebook page, etc., then please feel free to offer genuine condolences without asking what happened (if the parent chose not to share what happened detail by detail).
Please hear me out as the person who has lost a child. Those questions are simply inappropriate unless you know me, and you know me well. While I cannot speak for everyone who has lost a child, I can speak from experience that your questions hurt. Please understand we are trying to live our lives. It has been six years since I lost my son and I still hate those questions. My answer has been and most likely will remain, “He died from complications of T1D and you won’t learn anything from his death to save someone you love. All I can tell you is to not hold your child back, and let them go live their life.”
If you know the person who lost a child:
First, there is no exact “right” thing to say. But saying, “I don’t know what to say” is actually saying something. It’s OK to not have the right words because we don’t know either. It’s OK to reach out, whether it’s a phone call or an email or showing up on their doorstep. Go ahead and help make funeral plans if you are close to the person. Offer to help set up the memorial fund or bring food to the house, not for the person grieving but for the other guests there to help her/him. Assemble a list to use over the next month or so of people signing up to bring dinner to the home. The family isn’t going to ask because they are in excruciating second-to-second pain. They won’t think of their own well-being. They are only thinking of pain. A simple meal may sound trivial, but when you are hurting the last thing you want to think about is grocery shopping or making dinner.
- Do NOT say, “Call me if you need me,” because he/she is not going to call. They just don’t know what their needs are yet. Just be proactive and be present.
- Do NOT ask for details. If he/she is ready to give them, you’ll know. It takes time to be able to speak about it. Be patient.
- DO let the person talk nonstop about their loss and their loved one. A huge step for healing is to be allowed to talk about the person and share memories. It heals, I promise. I know because it heals me.
- Do NOT compare the death of your 17-year-old cat that was “like family” to the loss they are experiencing. And if you DO say something that later you are kicking yourself for saying, it is OK to say, “I’m really sorry I said that. I just didn’t know what else to say.” It will go a long way, because of course, we know that you are just trying to help.
I ask you to remember me more for what I try to advocate for and less about what happened to my Jesse, gone at 13, the most beautiful soul I’ve ever known. It’s more important to me that you remember Jesse was here and how he lived, not how he died. And I hope that this might help guide people in how to respect other families who have lost children. Small courtesies can go a long way.
Read more from Michelle – Ironman — A Woman’s Continued Advocacy for her Son and A Tired T1D Parent — A Unique Perspective.