GUILT
Tears. Lots of tears. Arms flailing, screams echoing through the house. A chorus of doors slamming and stomping feet rattle the walls. Dr. Jekyll, meet Mr. Hyde.
So often people tell us that Isabella seems so happy, always full of smiles. We share photos of her with her silly grin, stretching from ear to ear, proud of this and happy about that. To the outsider she seems like a toddler full of so much joy, conquering each daily challenge with a hop in her step and a shine in her eyes.
But not today. Today she is losing … and so are we.
One of the many challenges of type 1 diabetes is that its effects can vary person by person. Some can feel their lows coming, getting tired and shaky. Others, like Isabella, show no sign that their blood sugar is falling to a dangerous level. In fact, Isabella is almost always giddy and laughing when she is low.
As difficult as it is to tell her lows, her highs are hard to miss. The happy, goofy 4-year-old disappears and an anger-filled stranger takes her place and, as has become routine, she is exiled to her room until she calms down … usually falling asleep, exhausted from screaming and crying.
And I feel guilty.
I feel guilty because I know her body is playing a mean game of “Perfection”… just waiting for the sand timer to run out while trying everything to get her blood sugar back in range before scattering all of the pieces to the ground. No matter how hard we try, it always seems like the sand is faster than the insulin running through her body and we lose … a lot.
But there she is, sent to her room to cry it out and sleep it off. Kept home from a classmate’s birthday party because of her diabetes-assisted tantrum. Punishment for a disease she didn’t choose and for effects she can’t control.
And I feel guilty.
We get home from the party and prepare for bath time. I’m still angry at Isabella for her earlier fit, and even more frustrated that she doesn’t understand why she couldn’t go with her brother and sister. As she steps into the tub a mix of emotions hit me as I catch a glimpse of the technology keeping her alive. An insulin pod attached to her arm and her continuous glucose monitor embedded in her lower back … my robotic daughter.
And I feel guilty.
And I am mad. Mad at this disease and mad at what it does to my beautiful little girl. Mad that I can only control so much and mad that I feel guilty for trying to parent the best way that I can.
And tomorrow we’ll flip the sand timer again …
Read The Organ that Matters Most and Losing Sight by Kristina Dooley.
