I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Thursday, August 30, 2012

What I can't say out loud

"How's Johnny's Diabetes doing?" 
"Are you adjusting to diabetes yet?"

These questions, or the many variations of these questions are asked to me all the time.  First I MUST say they are asked by my friends and people who CARE.  Thank you!  Plenty of people don't ask.  Plenty of people don't know how to ask, scared to ask, or don't think its that big a deal.  Thank you for caring enough to ask.  I know you mean well.

Asking a mother of a toddler with type 1 "how's it going?"  Is like asking a woman who is pissed, "are you okay?"  She just says, "I'm fine."

My response is usually, "He's doing good."

What I can't say, because I can't bring myself to... because I know it upsets people... because if I upset people they might stop asking... because I feel weak saying it... but mostly because I am tired of crying is this.

He is three and covered in scars already.
He crys sometimes and asks me not to hurt him.
I HATE changing his pump site, but someone has to every 2-3 days.
His blood sugar is often over 400, making him feel bad.
We have to treat low blood sugars every other day or more and never for the same reason.
I got the news online that one of the other online mom's just lost their child due to low blood sugar.
He cries and tells me "I can't talk" because his BG is in the 40s and he is scared.
If he sleeps past 7am I wonder if he is alive... whats worse is if he isn't I don't want to find him so I send my husband to check.  This is my biggest fear, and it comes to mind every day. And now I know 1 in 20 type 1 diabetics will die of low blood sugar.
If I wake up to use the restroom at night, I feel like a bad mom if I don't check his blood sugar.
I obsess about his weight, the carbs, and how much candy/juice he eats to treat low blood sugar.  The doctor tells me he is "technically obese, but don't worry about that."  I worry about it with every bite he takes.
I know more than you do about his D so please stop making helpful suggestions.
If there was a cure, even if it was with organic food, or some herb... I would know about it before you.
Its not going to get better or easier.  We just are getting numb to it.  It isn't going to even out on its own until he is done growing.... like in his 20s.  This is my normal for the next 20 years.  I can't see that far ahead so it feels like it will be my normal forever.
I let my infant daughter scream her head off while I ignore her in the other room treating a low, maybe it takes 5 minutes, maybe it takes 30.  I am practically in tears listening to her.
Every day I am scared of the future, but put on a brave face.
Every day I look at my daughter and pray she doesn't get D until she is old enough to at least understand I don't want to hurt her.

But... "we are doing good," is going to be my response for a long time.  We are doing good because Johnny woke up this morning.  His kidneys are still working for now.  He hasn't lost his eyes to D.  He is in otherwise good health.  He is a happy caring toddler, a wonderful big brother, and the reason I do what I do. 


  1. That is exactly how I feel! I have had to let my new baby cry way more than his older brother ever had to, while dealing with lows or even just regular bg checks and I feel so guilty about it. We are doing "doing good" too. ;) My typical response is we are surviving. :)

  2. Oh how I relate to your sentiments! Thanks for putting it into words. Hang in there! Hugs to you from another d mom.