T1D and Parental Guilt: A Parent’s Response

WRITTEN BY: Cole Fenske

Beyondtype1.org recently posted a story by my daughter, Rachel Fenske, titled “T1D and Parental Guilt: A Child’s Reflection.” My story is a response to her story from a parent’s point of view.

All parents hope for is a happy and healthy baby, but parents also try to prepare emotionally and psychologically to take care of their child regardless of the circumstances of their birth or changes throughout their life. It is a challenging role and yet one we take on willingly.

A Type 1 diabetes diagnosis is cruel to everyone involved and evokes a host of reactions. From a parent’s perspective, yes, guilt plays a part. Are MY genes contributing to the problem, isn’t there something I could have done to help my child avoid this? Etc.

But a much larger part is love and compassion (and not out of guilt). Most parents love their child more than they love themselves. They will do whatever it takes to help their child grow, excel and succeed. And they will do anything to help alleviate suffering for their child. They won’t stop at shoving their child out of the way of a speeding car and taking the hit themselves, spending themselves bankrupt funding experimental health treatments or donating their own critical organs to their child.

Sadly, Type 1 diabetes brings much pain and almost no way to relieve it. For a parent there is no worse agony than to watch your child suffer relentlessly (endless needle pricks, frequent doctor visits and uncomfortable medical procedures, the confused, fatigued lows, the thirsty, dizzy highs).

And worst of all is the thought that if you or your child miss diagnosing and then treating a high or low that they could actually die. And you would never be able to see them or hold them or kiss them ever again. That is soul crushing. This you must live with every minute of every day for the rest of your life.

And yet this is nothing compared to what your child must live with every minute of every day for the rest of their life.

And so as a parent, you cling to the hope that T1D is survivable. That when it is well managed your child can live a long, productive life. Because the other thing a parent wants most is for their child’s life to be better than their own. To live longer, have a more fulfilling career, see more exciting places. And of course, to have the joy of having children of their own. Because as a parent you know there is no greater joy than when you come home and your 2-year-old runs across the backyard to jump into your arms.

And so yes, there is guilt. How could there not be? But there is also love. So much love. More than you can ever imagine.

Read T1D and Parental Guilt: A Child’s Reflection by Rachel Fenske.

Cole Fenske

Pushing 60, Cole has been happily married for decades to the most wonderful woman and he has three smart, beautiful daughters. He's a 30+ year veteran of the financial software business, who is a closet writer and loves science, history and travel. Our youngest daughter was diagnosed with Type 1 diabetes at age 17.