I was asked yesterday how I was doing. You know, the way someone genuinely asks and wants to know and makes you answer somewhat thoughtfully instead of just saying “I’m fine”. Because of the morning I have had inside my brain and anxiety, here is my for real no-sugar-coating answer:
I am overwhelmed and exhausted. In other ways, I am making serious head-progress as it relates to accepting the reality of my life with Kiran. At the same time, I want to cry and scream and crawl under the covers and refuse to come out. Also, I am determined, now more than ever, to figure out how to make the world a safely accessible place for Kiran. But, that leaves me often overwhelmed and exhausted.
I want insurance companies to think more holistically and stop being lured in by the present dollar. I found out this morning from our medical supply company that apparently, our insurance doesn’t cover Nourish (This is a real food enteral (tube-feeding) formula that we have used as a back-up for travel and now during Kiran’s school day). Apparently, we shouldn’t have even gotten our last shipment of it – and we certainly can’t count on any more. They will cover the sugar-laden enteral feeding formulas that no dietician would ever declare it was fine for an oral-eating kid to live off of, but they won’t cover real food that would actually make the child healthier long-term. It’s frustrating. If we choose to continue to use this as our school and travel food, right now, it would cost us an extra $100 a month out of pocket. We will probably just do the harder thing and pack blended food instead once our current supply runs dry.
At least once a week, I find myself wishing I could just put Kiran in the car and go somewhere. Anywhere. The grocery store, a friend’s house… without packing a million things. It is the cycle of forever grief, living with the reality of Kiran’s limitations. Not only do I still have to pack diapers and wipes, but I also have to pack feeding supplies – syringes and tubes and blended food – and then there is the wheelchair. And there is the constant thinking and plotting of how. How will I navigate this space – is it accessible? Is there a ramp? How many stairs? Will there be enough room? Am I going to look like a complete idiot trying to maneuver him in his wheelchair? I’m not a complete newbie anymore – but this is still going to be my first winter, and the ice and snow are going to bring added challenges and worries to what is already taking up a lot of space in my brain. Constantly.
But I refuse to hide out at home with him. Kiran deserves a life. He deserves to be out in the world, experiencing things, being with people, like any kid. So even though I have a million extra steps and considerations, I keep plugging along. Exhausted and overwhelmed – let it be damned. Kiran deserves a life, and I am determined to give him the best one possible. He will not be subject to his mama’s limitations too.
I live on this rollercoaster of determination and fear, joy and grief, confidence and utter judgement of myself – how am I doing? Well. I’m still out of bed, and I’m still fighting to live my best life and give Kiran his best life. But I wouldn’t say I’m fine.