Michelle Page Alswager is a long-time diabetes advocate, whose mission has taken on new meaning since the sudden and tragic passing of her son, Jesse, in February 2010 at only 13. She is a former Executive Director for the Western Wisconsin chapter of the Juvenile Diabetes Research Foundation, but continues to volunteer and participate in their Ride to Cure Diabetes, as well as working with the group Triabetes, a triathlon club for PWDs. Today, in light of her tragic news, Michelle shares some thoughts on her own experience and how to best help grieving parents:
The news has spread quickly about the recent loss of a 13-year-old girl to type 1 diabetes. Your initial fears escalate — after all, how many have you heard about since the death of my own son, Jesse, who also died at the age of 13 just eight short months ago? You’re scared, you’re confused, you want answers.
Since Jesse’s death, I have talked to many other people who have recently lost someone to diabetes. And — like you — I have to ask myself, “Are more kids dying from this disease or is it just more visible?” And you are saying, “I want to know more about how these kids have died so it doesn’t happen to my kids — or myself.”
I can tell you from my point of view that there are no answers from me or any of the other moms and dads. I can tell you not only are we baffled by our healthy, beautiful kids dying suddenly, but so are coroners and doctors. That’s not comforting, I know.
For now I offer you some advice — the same advice I have been giving to so many concerned friends out there who want to help people like me in this horrible time. I offer the following:
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 you are just trying to help.
If you see anyone posting negative things on the hundreds of message boards and Facebook walls, take it upon yourself to correct them and politely ask them to remove it. I can’t stress enough how painful it is to read untruths from scared parents who don’t know the details and are making assumptions. Stop them before the parent sees those kind of posts because I guarantee eventually the parents will be Googling for information about their children and the pain is awful when you read something ignorant or hateful about the death.
And please, if you do not know this person “personally,” understand that they may not accept a friend request on Facebook. While I loved hearing from so many people who care, getting hundreds of Facebook requests is overwhelming and impersonal even under the best intentions. Know if they do not accept the request it is not a slight on you as a person but a form of self-preservation.
Lastly, I want to tell you about something you can’t understand until it happens to you. And I guarantee every “diabetes” parent feels this with the loss of their child. I actually grieved the loss of diabetes in my life, along with my child. Yes, believe it or not, we wish it back every day. It is the routine of “caring” for someone that’s gone immediately. It has been 8 months and I still sometimes set the table for five — instead of four. And I still yell, “Time to eat!” and then stop myself from yelling, “Did you test yet?” I cry every time I say it. I cry when I hear someone else’s pump go off — I’m jealous and want it back. It’s loss of a community you once belonged or the fear of losing it. Make them feel they are still part of it.
And know that if you ever want advice talking to someone close to you, I’m here.