They say you are only as happy as your saddest child. I have to say that most of the time this is true. This becomes even truer when you feel like there is absolutely nothing more you can do to help.
Imagine being 25 years old and unable to leave the house on most days due to horrible fatigue, pain, and anxiety. Imagine having your sleep schedule completely flipped and being unable to even go on a walk around the block on most days. Imagine going to doctor after doctor and taking medication after medication with not one thing helping whatsoever. Imagine having no-one understand.
After telling a doctor or others the things I have shared above, I cannot tell you how many times people have asked me if she is working. The ignorance of this statement floors me. We are telling them her illness is so overwhelming she cannot leave the house on most days and this 'work' question shows me how little understanding they have of anything we are trying to explain.
Imagine feeling, as a parent and as the daughter who is suffering, that it is impossible to explain and how this increases feelings of abject isolation and aloneness.
Imagine watching all of this as a parent and feeling hopeless to change anything. Imagine being reliant on state health insurance and feeling so incredibly guilty for not choosing a career where I could have more wealth, where I could throw more money at trying to find her solutions. But, I am not wealthy and the answers are probably few anyway. But the guilt I feel at not being able to afford more solutions is intense and wrenching.
Imagine watching others of the same age start careers and families only to know that my brilliant and caring daughter may never have either career or family.
Today, I pondered, if I should just 'radically accept this horrible disability and give up hope of her ever having any kind of a different life. After all, this has been ongoing off and on for 10 years with steadying worsening of symptoms, instead of improvement. I don't know that I can accept that this kid, who has much to offer the world is just stuck in a small room in a very small world the rest of her life.
Talking to people about this has become a nightmare. The other day when leaving yet another message for a grandparent letting them know she couldn't see them, I broke down in tears. This message has happened over and over again and her grandparents struggle to understand. I know they also feel equally as hopeless and powerless to change this circumstance for the granddaughter they love dearly. Talking to friends about it gets old as well as nothing changes and I know they don't understand unless they, too, have been there and most haven't.
My heart breaks today, the day I started my labor with her to start her journey into this cruel world. It wears on me day after day and it colors my perception and every aspect of my life and relationships. For our little family of 4, it is heart wrenching and effects all of us in different ways. For my girl, I can't even imagine how painful this must be. But, for the rest of us ,we also hope daily for an end to this nightmare while also being weighed down and exhausted by the pain of it.
I don't know how to tie this up with an easy ending. There is no easy ending in this case. Some of this heartache can be tied to failures of our healthcare and mental healthcare systems. But, that is for another post. Perhaps the only thing to do is keep hoping that around some corner there may be an answer. In fact, this is part of why I talk about it on social media, on the outside hope that maybe someone somewhere will be able to help or have answers. So, far, I have had no luck. But, for now, all we can do is treasure what she gives us when she can. Her vibrant, creative, caring self. Her movie loving, art loving, family loving, amazing writer self. She is still those things, even when she cannot share them with many. And all we can do is keep loving her and each other through it all. Happy 25th my girl. May life get easier for all of us.
