This week I will share a nightmare with you...a real-life, wide-awake nightmare. Imagine you are slowly losing your mind. You are aware that you are forgetting recent events, and you know that person who is sitting next to you, but you just can't place her. Then someone says she is your mother. You know that is a special relationship, but you don't understand why she just doesn't ring any bells. You've been deaf for awhile, but you can hear now thanks to technology you have a device that helps you hear. Then suddenly you can't see anything. You are in complete darkness, and then you hurt, and all you know is you can't hear, or see, and these people are telling you to go 'down there' in your mind.
Picture this: a new baby, perfect in every way. They have trouble with choking when they are a toddler, and a congenital anomaly is found, and surgically corrected. At that time, everything checks out fine, no sign of any other health problems. Fast forward to grade school. Your little boy who is as sweet as can be is not paying attention and the teachers are upset. You take him in for a check up and find he is going deaf, and by the time he is 12, he is deaf. Well, that's okay, he was fitted for cochlear implants and he is able to communicate with you fine when his processors are on. He goes to the special school for the deaf and throughout adolescence he is a normal boy. He is an intelligent boy too, taking advance math classes and doing what any teenage boy might like to do. Now it is the start to senior year. The boy who was acing his tests is now failing, and he is unable to tie his shoes. He is becoming forgetful, his movements become slow and jerky, his speech becomes slow. When he is tested by the specialists, it is found he has dementia at 17 years of age. He also has features of Parkinsons. The seizures he has had for the last three years suddenly start becoming harder and harder to control. Then all of a sudden, he gets severe migraines, bad enough to land him in the hospital, and seizures that are long and scary. You stay in the hospital for a couple of days, then are sent home and told these are migraines, he'll be fine. Then three days later, your son is blind. He cannot see. He is so wobbly he cannot go to the bathroom by himself. He cannot walk. He forgets things from the day before.
Your doctors don't really know what is wrong, there are three wrong answers for every possible one that is brought up, each leading to more and more tests. They want to take out his implants so they can do another MRI, and your son, who is confused and scared will be left in utter silence and complete darkness. The only way you can communicate to let him know you are there is to kiss his face. He can smell you. He asks questions, only to be unable to hear the answer. This may be the longest 24 hours on Earth, until he can have his devices replaced so he can hear.
I have been working with a young man with a similar story . I am losing sleep over his case and the things he is facing. I almost broke down when his mother was telling me he told her good bye. That he had a feeling that he was not going to be on this Earth much longer, and the next time they would dance would be in Heaven. I am fighting the sting of tears right now. He knows things are not right. He told me he wishes he could get better. He made my day a couple days ago, without even trying...I was dressed nicely for clinic, but doing my hospital rounds. We chit chatted and then I went about examining him and he says to me, "You smell good." My response with a smile was simply, "I took a shower." Then his mother says, "Oh, L__. I wish you could see her. She is beautiful and she is dressed in purple and her stethoscope matches her clothes. She has the prettiest short curly hair. She is what I want to look like when I grow up." Here, I'm blushing and trying not to shrink into a hole, when his answer is, "Oh, I really wish I could see you. I just wish I could get better and see again."
Fast forward two days and I hear a heart wrenching story from his mother about him telling her good bye and asking her to snuggle up to him in the hospital bed, he is 18 but terrified. He is just a little boy. None of the typical adolescent bravado common to the age. He is fully dependent on his mother for everything. They have already discussed his funeral, what color his coffin will be...He asked his mom if she would be okay when he left. Her brave answer was "Yes, but I will be okay, I'll see you in heaven."
I have tears streaming down my face, and a sharp lump in my throat. This could be my son. His mother and I had a discussion, when his implant was turned off, she didn't want him to hear. She worried, because one doctor told her not to worry, he should have a normal life expectancy. But she felt awful, because she did not want him to live like this, possibly becoming completely demented and oblivious to those who love him.
Contrast this with a little 5 yr old girl, who has not been really aware since she was six months old. We struggle to do everything to keep her breathing. I spent hours sitting with her, reassuring her mother we would keep her breathing longer, get her blood pressure up, correct the temperature her brain is too damaged to regulate. She would recover this round of infection.
Where is the mercy? Where is the peace? Only in God.