23 May
Between 37 and 39 years old - The First Lesson continues...

After leaving the operation, the little star spent three days in the ICU recovering. We had to have a vest made to measure for her neck. Little Star's postoperative period was difficult. She went to her room and my dear wife stayed with her as she had to work. My brother from Emio had an apartment close to the hospital, so my father, mother, me and "badaró" moved there. With the use of the vest, unfortunately, the little star had the formation of a deep and very ugly sore on the head .. she had to undergo a specific treatment and I had to have adjustments made to the vest. In time, my mother went to stay with my wife and the little star. The little star improved over time compared to the operation, but the treatment process for the bedsores was more complicated. The little star stayed in the hospital for 64 days and left because we managed to get treatment for the bedsores at home.

Due to homecare, we had to go back to my father's apartment, since it was easier to provide care. I had to buy a hospital bed for the little star and things got better. It was very rewarding for me to stay at my parents' house. They had real star worship. We stayed at my parents' house for another 03 months. The doctor accompanied the little star during all this time. When we got back to the house, she was already released to have a "normal" life. What did normal mean? She would continue to wear a vest and could go to preschool. I was a little apprehensive, but we put the little star in the school. With time, the routine returned to normal... I left for work and took the little star to school. At lunchtime, I'd pick up the little star, have lunch and we'd go to the little star's activities... physiotherapy, occupational therapy and speech therapist. This routine was from Monday to Friday.

So, another year passed... and, again, a new one comes full of hopes and dreams... I dreamed of seeing my daughter able to walk... until after the operation, I began to observe some attempts by the little star to start walking. But, day after day, we saw progress, but she didn't walk. My routine remained the same, I took the little star, went to work, picked up the little star, activities, came back home and went to teach.... My wife's was to work, have lunch, do the little star activities and come back home. .. take care of the little star until she sleeps.

Something happened when I got back from college, the little star, most days, would wait for me to go back to sleep. I would come home, I would put my things away and the little star would always say: "Daddy?" So I would go to her bed and say "little girl, what are you doing up until this hour?", then she would laugh... I would kiss her and say "Now it's time to sleep, my daughter! Dream with the angels !"...incredibly, she'd give me a smile, turn over and go to sleep...how I miss that...

During the following year, we adapted to the reality of the little star. As things were happening, the continuation of the lesson was taking place. That environment in which we lived with other parents and children was challenging. We saw better and worse children than the little star. All being treated with extreme care and affection, whether in physiotherapy or occupational therapy. We heard real stories, in which there were structured families and dedicated parents, and there were dysfunctional families with children abandoned by their mothers. There were several reports of mothers who, when giving birth and discovering that they had a special child, were abandoned by their husbands. It was very heartbreaking to hear that. I wondered how a father could do that to his wife and child.

To my surprise, the Physical Therapist and Occupational Therapist told me that this was very common. The father, when he realized that he would have a "different" son and out of prejudice, left the family. In many cases, he and his family were ashamed of their child. I was heartbroken. There were cases in which the mother or father took advantage of the situation to act like a "poor thing", but in the end, they didn't take care of the child, they just passed the task on to a nanny and didn't have any patience. In that waiting room, lives and dramas were presented to me and my blindness came to an end... there was a hidden world that I had entered, invisible to most people, but it existed... a lot of pain and suffering, in fact. most of the time, but also a lot of joy and victories.

Another fact to be highlighted was the assistance provided by health plans in relation to this world. When we started, we were served by the health plan. However, as time went by, we realized that the Physical Therapy and Occupational Therapy sessions were becoming more crowded and shared. The little star problem was rare and required more specialized follow-up, which, unfortunately, the health plan did not adequately provide. We had to look for another solution. The professionals who attended the little star left the clinic for disagreeing with the policy and opened a clinic for them. They were specialized in the treatment for the little star. We went with them. Another question was about the speech therapist. The plan only allowed one session per month... the little star needed weekly sessions, so we opted for the best treatment in both cases... the private one.

So, as expected, I had to try to increase our income to cope with these expenses. It was a time of extreme difficulty. Everything we had was channeled into caring for the little star.

I cannot fail to take this moment to thank and express my gratitude to these professionals for all the affection and love they had for the little star. The dedication was huge. They loved and love what they do to this day. I can't thank you enough for what you did for my little star. Thanks!

The little star was shining brighter and brighter... everything was worthwhile, everything was rewarding... everything was love... her presence illuminated us and made us grow as human beings. And so, with the comings and goings of life, we continued our first lesson, humbly learning the importance of life, family, charity and love.

* The email will not be published on the website.