Keti Okitashvili, 47, Tbilisi

“I was 33 when I was pregnant with Niku. I had a difficult pregnancy. In my 32nd week, my obstetrician demanded termination of pregnancy because of undoubted signs that the child would not be born healthy. My husband’s family suggested abortion on the pretext that my health would be compromised. I refused point-blank. I thought my health was in that particular case of secondary importance. That conversation took place on July 1. Niku was born on July 28. I packed my things on July 1 and left for home but I did not think that I was parting with my husband forever. I just assumed I had better get away for a while to avoid conflict, and more importantly, to give my child the chance to live. We have never seen Niku’s father since then…

Not that I am badmouthing him. No. I think men are generally weak and cowardly… He was under the influence of misinformation from his family and was afraid of the responsibility, so he ended up altogether avoiding it. Before Niku turned five, I gave him two gifts on every birthday and New Year – one from me and one on his father’s behalf so that he did not feel abandoned. Once he grew up, however, he saw things as they were.

Niku was born with congenital spina bifida. And that’s when my battle started… My mother passed away soon – she was worried sick about my divorce. Only my friends and my spiritual father, who is also Niku’s godfather, stood by me and helped me both financially and emotionally. Spina bifida is not a well-researched condition in Georgia, so the latest methods of treatment are largely unknown. Most patients are wheelchair users or have speech disorders and carry a shunt attached in head… Niku underwent the first surgery a few hours after birth. Our purpose was to close the exposed nerve endings; however, the rehabilitation period lasts for the entire life.

Niku did not have sense of feeling in legs, but he still walked – something we achieved by frequent massage courses. I search the internet about this condition and try to use the information myself and share it with other parents, because children diagnosed with this condition need to be treated in the right way. Our government does not even have statistics about such children.

Niku is now 13. He has a slight impairment in lower limbs. I do my best for him to feel a full-fledged member of the society and I compensate his condition by letting him pursue his passion – travelling. We have been very lucky – he has already been to 22 countries and he is the one to plan all those trips. I just follow him.

I try not to miss a single conference concerning spina bifida. There is an amazing practice abroad of inviting parents together with their children – while the parent attends the conference, the child gets to meet other children with the same condition. Once, in the US, I went to see Niku in the neighboring building after the conference. I saw him coming out of the elevator and pushing a wheelchair of a boy. This was the first time he realized there are people around him that need his help, not vice versa, as it is in our country, where there is a stigma that people with disabilities only need to be taken care of and that they cannot bring any benefit to the society.

Nika already shows professional interests. He is into airplanes and anything related to aviation. I have no idea when and how, but he has compiled a book about the planes existing in the world and now he’s going to publish the advance copy with the help of his friends. Last year, I showed the mockup of this book in the U.S. and was strongly advised to publish it, but back then, it seemed so unrealistic that I just laughed it off.

He has installed a soft in his computer to know the models of the planes arriving in Tbilisi airport, and the times of the arrivals. Once I was at work, in the night shift, when he informed me that the largest airplane in the world, Antonov, was to land in the airport for fuel. I sent the car to take Niku to the airport. He took many photos to add to his album.

It hurts me to say that I don’t see any future prospects for my child in this country. The attitude of the wide society and the medical personnel towards children with disabilities is so different abroad that what puts him down here will push him forward there. In some countries, the government takes care of everything I’m struggling to solve here. Niku wants to become a pilot but here he has to pass the requirement criteria he won’t be able to meet. However, there are countries that even have pilots in wheelchairs. Recently, he has been thinking of going into navigation though.

What I fear most is the future. A few days ago, I had a heart attack and had to be hospitalized. I realized at that moment that if something happens to me there will be nobody to take care of my son. I don’t mean my friends. I have many friends and they give us a lot of attention, but your own flesh and blood is different… I even thought of getting him close to his father, so that he has someone to care for him. How can I rely on the country that does not even have updated information about Nikusha’s condition and I have to fight tooth and nail with insurance companies to receive any medical service!

He once told me “mom, I’m your LEGO constructor – the most expensive one that you will use to build others on.” We are only half way to accomplishing that mission. If I were given a chance to start my life over, I swear I would not choose another path for me. This is the path that will let my child grow into a full-fledged individual and give him the future equal to others.”

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