Friday, February 22, 2019

One moment in time


Empathy is a tough one. Every human is born with the capacity to understand and feel what others are experiencing. But psychologists agree that putting one's self in another person's shoes is a learned behavior and that innate capacity needs to be developed. It also varies in different situations. Not everyone will feel the same level of empathy towards the same person at the same time. Our personal experiences, histories, relationship to that other person as well as their own histories and what we know of them all play a role in how much and in what way we empathize. 

And sometimes, there are moments in time that are so universal in their intensities that all subjectivity fades away. 

This morning I had to take Jad for a brain MRI. 

He has sleep issues and keeps waking up in the middle of the night. This has been dragging for way too long and we cannot sustain it anymore. Well, actually, he seems to be able to run on four hours of sleep. But Zombie Mommy is on the verge of a breakdown. Actually the whole house is affected and it is causing unnecessary stress and hardships. And even though Jad is functioning on the outside, sleep deprivation is definitely affecting his therapy and learning. He is cranky and less patient and obviously, sleepy most of the time. 

This is common with people on the spectrum. I have read so many posts from families suffering from the same. 

Our neurologist decided to proceed by elimination in order to assess whether in Jad's case the issue is medical or if it is behavioral and consequently, find the right treatment and therapy. 

The first time I went to the radiology floor at the AUBMC was brutal. 

I had to prepare all the insurance documents for pre-approval and I spent some time there. While waiting in line a man in his thirties stood behind me, waiting for his turn to settle his bill. He was talking to a lady, begging her "you know the truth, you have seen these so many times here, tell me the truth" and she eventually answered "it is bad". He proceeded to tell her how he did his research and read the statistics and survival rates were lower than 10% in that case and he burst into tears. A grown man, crumbling like a child in this strange woman's arms. His desperation hit me like a knife in the heart. That man. So tall. Looking healthy and even handsome. He suddenly became as small as my Jad and all I wanted was to hold him. 

I have no idea what the case was but as he was crying, a wheelchair passed by us. On it was a child, maybe 8 years old. His head was shaved and he looked so pale and frail in his hospital gown. Right behind him, on a bed, rolled another child looking like his twin. He stared at me with blank eyes and it hit me: the radiology floor. This is where all the children come for their tumor scans. My heart sank. 

I hate hospitals. I know they save our lives most times. But there is something about death always lurking around in a hospital. The smell. The walls. The people in the waiting rooms. Just waiting. It makes me sick each time. 

Today I walked in determined to be strong. After all, I had been there before and I knew what to expect. 

We prepped Jad and took him to the MRI room and he was the cutest thing in the world. For some reason, he loved it and decided to climb on his own, without anyone prompting or even asking anything of him. He was all smiles and in that instant my heart was finally at peace. 

And then it happened. The anesthesiologist held Jad's head and two technicians grabbed his arms and legs and they put a mask on his face. All he needed were five breaths and he would be asleep but of course it turned into eternal hell in front of me. They were pinning him down and he was fighting the mask, staring at me, begging to be saved. I kept trying to calm him down but it all looked liked a bad movie. His eyes started to roll back and he kept trying to look at me and then he fell asleep in the most horrible way I have ever witnessed a human fall asleep. It was heartbreaking. I cried. The doctors and technicians were absolute angels. They kept reassuring me and even tried to make me laugh by saying we always forget we need to anesthetize the moms first. Clearly, I was not the first one to cry in that room. 

And then I left. I had to get a nurse from the laboratory to come down and take blood samples from Jad, while he was asleep so he wouldn't fight the needles or the IV. We came back and we met  Jad in the recovery room where everything was also a bit of a fight but this time, he was still out so it made things easier. She took so much blood. And when he woke up, he tried several times to remove the IV but we managed. 

My hero, My Jad 

As we waited for him to be completely awake, a child rolled in his wheelchair. Head shaved. Bandage on his chest. He looked grey. His mother was a shadow of a human. She looked at me, nodded and then started to look frantically around the room. She wanted tissues. I directed her to the sink and she hid behind the wall and cried her eyes out. The second her son realized she wasn't by his side anymore, he started crying, calling for her. I swear, I died a little. He was probably 9 but he looked so helpless and afraid. A child calling for his mom in fear and desperation. She came back running and he calmed down instantly. It all took seconds. It felt like hours. A nurse came and talked to him and that boy, so small and so helpless asked "you will make me sleep and I will not feel a thing like my last surgery right?" and I looked at his mom and both of our hearts cried. he had been there before. He had be under the knife before. And there he was, again. How unfair and devastating. I walked to her and she knew I was feeling all of her pain if that was ever possible. I looked at him and told him what a cool mask he had on and what a hero he was for being so strong. He smiled a little while his eyes were screaming "I am not strong, I am so afraid".   

And I turned and cried, with that mom. Silently. Hidden from our children. 

And in that moment I wished so hard for God to exist and miracles to happen. I am not an atheist but this time, I really needed God to be there more than ever and actually do something. To save that boy. To save all the children. 

Life is not fun. 

Humans are so fragile.

And sometimes it just hurts to be alive. 




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