He has kept his wisdom and compassion! Maybe because of, may be in spite of.
I am caught by surprise several times a day by this boy and how he accepts his situation. There is no anger or resignation. Sometimes it scares me. The fact that he doesn’t express his emotions more scares me. Scream, yell, swear, tear, kick…! He would be in his right to do so. Yes, he would. He shows a warming compassion for those who support him through the days. Likewise, it is scary to witness how he blocks out and shields himself from those who don’t support him.
I think getting a disease this misunderstood and «foggy» which stops him from living while he survives, puts life in a perspective a healthy person can only imagine. The rest of us are busy with how we look, if we have enough money to spend on whatever we don’t really need, if we are perceived as successful, if somebody happened to hurt us, how many likes we get on Facebook, – this boy spends all his day trying to survive. This is a disease that – if you are to understand it – has to be experienced. You can try to understand from a distance but you will never fully get it.
The life of a person with ME consists of basic needs. Basic needs are very important to an individual’s growth and development. Food, drink, sleep, air, hygiene, safety, love and care. And when you are as sick as my boy somebody else has to prepare the meal, serve the food, and clean up afterwards… Somebody has to make sure he has a drink within reach… Preferrably with a straw, or a sippie-cup… Somebody has to arrange so that he can sleep well… pillows up, down, blankets, sheets, comforters… Somebody has to help him the very few and rare occasions when he finds the strength to go outside the door to get fresh air. (More on this later) He gets what I call constant hot flashes (more on that later as well) and he needs a fan aimed at his face. Off during meals, on again, off, on, off, on. Somebody has to make sure nothing is missing and nobody disturbs him when he is in the bathroom, get clean clothes, picking up after him…. The security of knowing that somebody is there ALWAYS – he just need to whisper or text. A tender glance …closeness! Unfortunately somebody has to act on his needs, – not my needs, – nor yours, but his!
We all have wishes and dreams, and basic, as well as less important needs. All throughout life. The boy also has these dreams and wishes! Every day. Actually, I think his dreams and wishes are stronger and more powerful than ours. Also, his gratitude towards the smallest of favors and things is far bigger than ours. He shows a rare maturity towards what really matters in life considering his age. It is my responsibility as his only close person to fulfill his dreams and wishes as far as I can in our little world.
– Mom, could you please …?
– Yes, I can!
– thanks, you really can, Mom!