This week, I will be posting a series in response to specific topics, as part of the WEGO Health Blog’s Advocating for Another Carnival 2012. You can do this too; click here for more information!
Day Three: Challenge Accepted
In this post, writers are asked to share three challenges faced as a parent.
As anyone living with Type 1 Diabetes and/or Sensory Processing Disorder knows, the challenges of these conditions are endless and can feel insurmountable at times. Add that to the everyday challenges of parenting in general, and, well, there are days when I feel like all I’m doing is clinging to a slowly-deflating life raft. On these days, it can be difficult to see the big picture, remember my supports, and think in a way that will help me stay afloat.
Even as I’ve become more knowledgable and competent about parenting a child with T1D and SPD, there remain a few issues that soak my soul with worry and fear. They are the issues that consume my thoughts at times and keep me awake at night. They are the issues that drive me to tears when no one is looking.
Here is the one that currently holds the number one spot on my list of worries and fears.
At the tender age of 7, Madeline has developed a hatred for her body and a fragile sense of self. In a given day, she endures about ten finger/toe pricks to check blood glucose levels and around six infusions of insulin (often more, if blood glucose levels are high). Fluctuating blood glucose levels lead to continuous changes in mood, energy level, appetite, vision, and “feeling-rightness” as Madeline’s body struggles to right itself every second of the day. She struggles daily with the fit and feeling of clothing, and with finding comfort in her own skin. T1D has a costly social impact at her tender age: it makes it so that Madeline can’t be dropped off at friend’s houses for playdates or sleepovers, and can’t attend daycamp independently during the summer. In the midst of fun, she has to disengage to test and treat. She’s beholden to a machine, attached to her body, to keep her alive.
There is no doubt that Madeline is a tough cookie. Living with T1D and SPD, she has shown incredible resolve, tenacity and courage. She’s taken on the challenge of learning about each condition as fully as she possibly can, and has great insight into how they affect her life. She’s increasingly invested in learning the skills and strategies needed in order to manage these beasts so that they don’t consume her life in ways that are unacceptable to her.
And, at the same time, Madeline has developed an intense hatred for her body. She’s internalized T1D and SPD as breakdowns in her body, and she feels angry and betrayed. She does not recognize her strength, her ability to carry on despite the challenges each condition presents to her. Right now, Madeline views her body as an enemy, and every day vocalizes a strong wish to be someone other than herself. Despite having pen pals and support group peers with T1D, she feels utterly alone in her battle. In her worst moments, she hits and bites herself in fury. Seeing her in such misery brings me a depth of sadness that is difficult to explain. Here is a child who gives so much to the world, who brings so much light and joy to those who love and care about her, who is simply magnificent… and she can’t see it through the storm of T1D and SPD.
Madeline lives with Type 1 Diabetes and Sensory Processing Disorder.