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 of this year at only 13. Michelle 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 last week’s tragic news, Michelle shares her thoughts on her own experience and how to best help grieving parents:
A Guest Post by Michelle Page Alswager
The news has spread quickly about the loss of 13-year-old Eilish 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.
Michelle has graciously made herself available for support — to reach her, email her at curejesse@gmail.com.
Tears…the last paragraph…well, it really got to me.
What a beautiful, knowledgeable post about something so intimate.
Simply, “Thank You”
`Hello, I must say that when I came across your page I broke down tears rolling down my face I have lost my son to. four years ago still seems as if it was yesterday. to the monster I call type one . he was told that he was a diabetic at the age of 8 and we had a hard time with him he just did not want to accept what was happing to him and we fought a long hard battle we lost Thomas at the age of 19 and even thought he was 19 he was still my baby he was my first born and I tried to make him ok he didnt like the idea that he could not get a good job or insurance to cover his meds I was hleping him with this and this was not sitting well with him he felt that he was never going to be a man . in my eyes he was a great young man the report stated that he negletctied him self and did not take his insulin so that he killed him self this is a hard idea to live with I could not do what all mothers are made to do and that is to protect him. I feel as if my world stoped that day and it has not been fair to my other two boys who are now the age he was what is a parent todo how do i move on and keep the good alive yet let the anger go at my self for not helping him more. thanks for listining at me ramble you lost in the monster,.
How brave and kind of this woman to guest post and offer advice.
I really, really appreciate it.
Michelle, that was beautiful. Thank you for opening your heart like that.
Michelle, thank you so much for opening your heart and sharing with us. I am so sorry for the passing of your son and that you must live with the intense, consuming grief that you talked about here. You are incredibly strong for living day-to-day– and for offering your wise advice to us. As a person who frequently “doesn’t know what to say,” I really appreciate it. I so admire your grace and courage. Thank you.
Thanks for the post. My throat swelled when I read the last paragraph. What a moving statement and a reminder to us with kids with diabetes to be grateful for every day with our precious kids.
Thank you
Michelle:
How beautifully and poignantly you captured the essence of your experience this year on so many levels – from how others can effectively support the bereaved to the wrenching final paragraph that underscored an unexpected aspect of your irreconcilable loss… thank you for your guidance and your willingness to share your pain.
Hugs to you.
Thanks for sharing.
What a beautiful, heartfelt, helpful post, Michelle.
Thank you for your courage – you will always be a very important and integral part of this worldwide diabetes community -through your continuing advocacy, we will push to have researchers stand up and take notice of this “dead in bed” syndrome, to get more answers and help do whatever can be done to prevent this in the future. All of this should also drive everyone to do everything in their power to find a cure, sooner rather than later.
Words that so many needed to hear! When something tragic happens, food and a listening ear go a long way. Thank you for reaching out Michelle. Much love to you and your family. You are a vital part of our community!
I get it, sadly. Very well written, I love you Michelle. I love you for all you are to my family and how you have helped me go through what you went through and what we both are always going to feel… Forever. I used to hate diabetes, now I miss it. Jen
Michelle,
Thank you for your heartfelt words and wisdom. I realize we’ve never met….and, perhaps, this means nothing at all, but…I’m really proud of you for speaking out and assisting all of us to learn how to handle such difficult tragedy.
Michelle,
Thank you for sharing. I saw you on DLife too and it breaks my heart to hear of loss due to diabetes. My son is 12 and I am so afraid of that 13th year now. We have been dealing with diabetes for over 3 years now and it is such a big part of our lives I don’t know how it would be to just stop. I cannot say I know how you are feeling, I can only imagine. Thank you for putting a voice to the loss.
Sue
Thank you for your honest and open answers that we all needed to hear. You inspire me. Thank you -
Michelle,
Thank you for writing this. It helps to know what to do and say when a family loses a child…or any other family member. And the part about missing the diabetes does make sense…I can see how that would happen. Take care.
Thanks Michelle. And I’m really sorry for all the stupid stuff I’m said – I really didn’t know what to say.
You continue to help so many people so much more than you will ever know. Thank you.
I appreciate hearing your perspective. Thanks so much for sharing. You are still part of our community and always will be.
Michelle, You are a real inspiration. Thank you for reaching out and sharing your heart
Michelle,
Thank you so much for your strength and bravery and for writing these important words.
WOW! What a beautifully heart-wrenching expression of the kind of love that can only exist for your child.
I am responding from the other side of that love equation. I want to offer the perspective of the diabetic child… because until I became an adult, that’s what I was….
A few years ago I read a story in the Boston Globe about a teenage girl who died from the toxic marriage between diabetes and an eating disorder. I immediately recognized myself in the story. You see, I lived 22 years with diabulimia. Today I am 49, healed, and whole. I have no major complications of diabetes and I have 17-year-old twins. Mostly I want to offer hope to any parent out there who suspects his/her teen may be afflicted with the same double-edged sword. I am here to tell you that not everything that is broken can be fixed, but healing is ALWAYS possible!
I am here to help. It deepens my own healing to believe that I might make a difference for those children who still suffer. Please email me at: maryjeannehunt@comcast.net
Thank you for sharing the last paragraph. When I lost my child to SIDS I still woke up every morning at 3am to feed him. This lasted a year.
We didn’t have help from others besides my parents taking our other 2 girls for a week so we could mourn. When a parent loses a child its easy for others to look away because it is a taboo subject and they dont know what to say or do. It is tough to do basic things like shopping. We drove 15 miles into town and there were times we had to pull along side the road and cry then gain the ability to keep driving. If anyone knows of someone who lost a family member help them even if they say they dont need it. Buy some groceries or make a meal and leave it on their porch if you have to.
Thank you for this post.
Thank you..from a D Mom. You are an inspiration. Jesse and Eiliah will never be forgotten in our home.
Thank you – from another D mom. I can’t even imagine what you are going through, but the thought of losing our daughter is never far from my thoughts. Thank you from the bottom of my heart for sharing. You are an inspiration to us all
Michelle, Thank you for your honesty. Thank you for bravely reaching out to a community that is scared! Your words are so powerful. I know I will remember them always – although I pray never to need to use them. I gave a speech about JDRF tonight – and I mentioned Jesse. He will not be forgotten. You are both an inspiration to us all and reminder of why we do what we do. Love to you and your family!
Michelle,
I am sitting at my computer with tears streaming down my face. How beautiful it was of you to share your story in order to help others. My brother and I have lived with Type I diabetes for more than 38 years.
I still recall my mother sobbing when she learned of my brother’s diagnosis (just 2 months after mine.)
To think you lost your beautiful son at age 13 is so very sad. My heart goes out to you.
June S.
You are a courageous person and as a d mom of now two kids I thank you for giving us insight into this scary world we live in. My heart aches for u and others having to go thru this. Thank you for all u ate still doing.
Michelle, you are the BEST mom in the whole world!!! I hope you know this. Jesse was sooooo lucky to have you. And so are the rest of us. THANKS for all that you do, you are an inspiration to the rest of us who are still hanging in there.
Michelle,
I sit here crying.. I have no words. None.
I worry every second of every day about every complication of this horrible disease. I wake up 3-4 times a night and walk into Jonny’s room to make sure he’s OK.. I’ve done this every night since he was diagnosed. I don’t sleep any more and I don’t ever stop worrying. I try.. I try.. but knowing that diabetes can rear it’s ugly head at any time and do terrible things, I worry.
I miss my Megan — who is away at college, in a dorm room, with her Type 1 Diabetes always in tow. I still worry about her and call her more than I really should.
And, though I don’t know your personally and never met Jesse, I go to your pages and look at the pictures to remind myself that he was here — and that you and him have made a difference in the world — and in my life..
You inspire me every day to keep fighting the fight. You have taught me more about commitment and love than I ever thought I’d learn.
And now you’ve taught me more — and I thank you.
Donna
[...] Tenderich, author of the blog Diabetes Mine, ran a guest column from Michelle Page Alswager, who lost her 13-year old son Jesse in February to ‘dead in bed [...]
Thank you for sharing your heart, Michelle!
WOW talk about emotionally moving! Thank you so much for sharing, trully an inspiration!
[...] the fourth one she has heard about in 2010. Amy Tenderich, author of the blog Diabetes Mine, ran a guest column from Michelle Page Alswager, who lost her 13-year old son Jesse in [...]
How do you continue your life, when your child who had diabetes, is no longer with you?