I discussed this issue in depth with another mother around 5 years ago. Her daughter lives on a vent 24/7. Some would say “what quality of life is that?” So, where do you think the line should be drawn, friend? That is some big heavy. That is some thick, real, hard talk. People who say such things, don’t understand.
The sad part is that we are the creators of said “imaginary line”.
The hard part comes when you begin blaming yourself or shaming yourself for the what if’s and what not’s. Did I do enough? Did I do too much? Why did I push too hard? Why wasn’t I pushing harder? I did this all afternoon today. It is relentless torture, trying to define this line.
Regardless of other folks opinions on quality of life, love is why we drive ourselves crazy looking for the best means of care. Love is the driver. Love is the cause. Love is in the tears and the hugs, even when you can’t give another ounce of effort. The harder days. The moments when we are so emotionally frail. The fact that we are trying, doing our best, pushing every limit, that is love. Lines, my friend, are simply irrelevant.
We love our kids. Some can’t hear. Some need assisted breathing. Some need wheelchairs and feeding tubes. Some need an extra pill, or extra time and attention. And that’s ok.
Nobody has the same “line”.
After harshly beating myself up mentally today, when I looked into the eyes of my child, there was a deep, rich, indescribable “thank you” that echoed back from his. In that moment, I was content with all my efforts. His life is worth far more than anything could practically define with words.
Creating lines that are imaginary just takes more work. I know you and I certainly could use less, not more of that.