Tough Days

Autism is a blessing and a curse all at the same time. I have lived with this over forty years with my daughter before the word “autism” was even a common diagnosis. We have good days most of the time, but today is one of the tough days. Her sugar levels are up which makes her grouchy and argumentative. As her mom, I want her to eat right. My daughter often wants to eat what she wants to eat. Where do I draw the line? At what point do I just let it go?

She’s in her forties and lives with us. We have been up one side of the mountain, and just when we go to zoom down the side to normalcy, we have another mountain to climb. After the liver transplant, the sugar was fine without any need for insulin. Since she has been taking the cancer treatments, the sugar has increased and is going crazy, so she went back on insulin. Her kidneys need to be replaced, although they may bounce back some since she is finally done with her treatments. I have to worry that on Monday, her sugar will be below 200 because she cannot take insulin for six hours, and she will not be able to do her PET scan if it is not below 200. This has been a vicious cycle. All I want for her is to have some normalcy back in her life. She needs a routine.

This weekend she is going to cousin camp at my oldest daughter’s house. It’s just overnight. I really want to go, too, but I also need a break. I have that guilt looming over me. She is so excited about it and obsessively talks about it whenever she feels okay. She’s riding up with her cousin. That makes her so happy. So, my stomach is in a quandary today. Do I take the break? Do I stop reminding her she should not eat some of the food she is eating or should get out and walk so that her sugar level will go down? Do I have to keep reminding her to drink water all day long? I suppose I need to follow my gut feelings, just as I have with every other decision I’ve ever made. I will continue to do my best to keep her on track despite the bumpy road.

Later…