Juvenile Diabetes: Grieving the Loss of a Normal Childhood

Patient Expert

Ever since my son's diagnosis with diabetes, the Easter holiday has been a tough one for me. It's not so much the holiday itself, but it's the preparation that gets me - specifically shopping for the goodies that go in the Easter baskets.   I know the tricks (which are akin to surviving most holidays laden with treats, like Halloween or Christmas) where I should   buy small presents instead of candy or focus more on the family or friend get-togethers than the goodies. But I still cling to tradition and want to put some sweets into the baskets.

So, there I found myself, standing in the eight-foot tall seasonal candy aisles at my local Target, surrounded by thousands of solid chocolate bunnies, gooey Cadbury eggs, a rainbow riot of all types of Peeps, jellybeans, robins eggs, pastel M&Ms and orange Reese's pieces in carrot shaped bags. I wanted to sample everything, and I knew my kids would too. This thought set off a longing in me for the carefree days before the Type 1 diagnosis when eating, particularly sweets, wasn't such a hassle. I stared down the closest display of smiling white chocolate bunnies, shaking my fist angrily in the air like Lucy Van Pelt, and hissed at them, "It's not fair, you stupid carb-laden bunnies. It's just not fair." I felt like grabbing hold of one of them and decapitating it in one swift bite. I refrained, and sadly went back to selecting a few "acceptable" pieces.

I was still steaming mad about the situation a few days later when I'd been talking to a fellow parent with a Type 1 child, and she'd clued me into why I was feeling as I did: "Most parents don't realize this," she'd said to me, "But when their child is diagnosed with Type 1 diabetes, they typically go through the seven stages of the grieving process, and what they're grieving is the death or loss of their kid's normal childhood."

Bingo. A big 100 watt light bulb went on in my head. Although I vaguely was familiar with the seven stages of grief, like shock, denial, anger and depression, I'd never equated this process with all of the feelings that I'd been experiencing since my son's diagnosis.

Curious, I did a little research on the seven stages of the grief process for my own edification. I was astonished at how closely I had tracked to each stage. After talking to a few other parents whose children have been diagnosed with chronic or serious illnesses, many experience most of these stages and agree that they are grieving the loss of a more carefree childhood without the illness hanging over their heads.

The following are the stages as they typically are experienced, although the stages can occur in any order and some of the stages can happen simultaneously and seem closely related:

  • Shock and Denial: Which often happen immediately following the news of the diagnosis. In order to avoid confronting the reality of the news, we often will deny that it's even occurred.
  • Pain andGuilt:   Once the initial shock has worn off, pain - at times unbearable --sets in. This pain is heightened by a sense of guilt, and the feeling that we as parents should have done something more to protect our child from this condition. I still am badgered from time to time by the guilt.

  • Anger and Bargaining: If I were Faustus, I would sell my soul to the devil to change places with my son and be the one coping with diabetes. And as I mentioned above, I still feel the anger of being forced to contend with the condition.

  • Depression, Reflection and Loneliness: Unfortunately, once the initial shock of the situation wears off, a mood of depression can be intertwined with each step, ideally lessening as one has that upward swing. Too, I felt, and often do feel, a great sense of being alone, that so few others can really understand what I am going through.

  • The Upward Turn: Feelings of sadness, guilt and others begin to lessen, and you look to begin moving forward.

  • Reconstruction and Working Through: This is when life becomes more manageable, and you face the condition and situation realistically in order to move forward rather than standing still.

  • Acceptance and Hope: This is where I wish all parents find themselves on their journey, although it can be a difficult road. Life can be wonderful, even with Type 1, and our children have many successful role models to look to, as do we as parents.

It's important to understand that it's normal to go through this type of grieving process with a diagnosis as tough as Type 1 diabetes, particularly when it's your child. Turning to your support network, whether it's family or friends, can be immensely helpful. Too, consider a support group, whether in person or online. These groups can help lessen the feelings of being alone. Online resources can be helpful as well, like Coping and Hoping, which is for parents of Type 1 children. And if you feel overwhelmed and unable to move past the diagnosis and feelings of depression, loneliness or anything else, consider turning to professional counseling support.

In the end, I did buy some candy for my boys' baskets (having naturally compared all labels for carb contents) as well as a few small presents. And all of my kids can eat a chocolate bunny in one sitting, as long as it's no more than 15 carbs. I may not be completely happy with this arrangement, but at least I'm accepting it, which I feel indicates that I've been able to move past the feelings of anger and guilt and am looking forward with hope.

And I've just decided to buy some peeps on clearance. I've heard that Peeps melting in a microwave oven is a cool science experiment. I wonder if revenge to compensate for anger, even if it's on a sugar coated marshmallow candy, is a form of acceptance?

I think so.