November 5th marked 4 years that our son has had Type 1 Diabetes. He and I have entered a new phase, one I’d love to say is positive, but the reality is far from it. After Evan was diagnosed in 2015, I had a short time period spent wallowing in my own despair for the loss of what I saw as a normal childhood and life for my then 5-year-old. I cried and googled and worried and went to worst case scenario repeatedly. But it was short lived.
As a parent, you realize you have a little one struggling with their own grief, anxiety, and despair, so you put on a new face and go straight into problem solving mode. You spend countless hours learning how to medically care for them, how to navigate special needs at school, how to deal with insurance companies and medical equipment providers (which is so much harder than it should be!), how to train others to care for them when they can’t be with you. And you hold on for dear life and dive straight in to an organized approach to your new normal. Even though you hate it.
And at many times over the last four years I’ve done everything I can to scrape the barrel for a silver lining on this diagnosis. The amazing people I’ve met, the strength I’ve seen in my son, the support we have from our family, the resources we have (that many don’t) to financially deal with this disease, my friends who have been there for it all. I know I have more support and resources to deal with this than most, and I see the people that struggle without it and my heart breaks. All the time.
But now, even I’m tired. Exhausted. Beyond words. Isolated. And worn-out hiding behind my positivity.
The reality of this disease isn’t happy, positive, or uplifting. Despite the best caretakers, support, finances, technology, medicine, and care team possible, our every moment is clouded by T1D. It’s the ghost or the elephant in the room or in our minds all the time. It’s what wakes me at night. It’s what distracts me at work. It’s what keeps me from the self-care I know I need. It requires somewhere around 100-150 decisions in a day. For me, for my young child, for school staff who have a million other things to. And there is no end in sight, no cure.
This year has been the year of burnout and depression for us. What was wrapped up in energy and problem solving at the beginning, after 4 years, has turned into such a chore, as we deal with the day to day. It’s watching our nine year old sob about T1D and the exhaustion of having to deal with that rather than just be a child. It’s the anxiety I face about the gravity of the decisions and care for him, worrying that with a mistake I make or someone else makes, it could take his life or put him in the hospital. It’s seeing the bruises and bumps on his body from the medical devices he wears 24/7. It’s keeping us all up later in the evenings most nights to switch out infusion sets and sensors. It’s feeling the stressors on my body and emotions due to lack of sleep, being up multiple times in the night to deal with his T1D. It’s realizing this disease has taken so much from our son’s childhood and worrying about what else will be taken from his life as he gets older.
This isn’t to say I don’t have a large amount of gratitude, for our son’s school, his school nurse, his nanny, our family support, my friends who check on me, my co-workers, my flexible job, his care team at Barbara Davis Center, and so much more. But some days, the raw and difficult truth is all I can muster.
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