Tuesday, February 12, 2013

To live at all is miracle enough....Mervyn Peake

‘How about visiting Mahima and Mohan family today evening ?’ Asked Anil on Sunday afternoon. I replied - should be fine, its been some time we visited them and Unni. (Unni their 14 year old son wheel chair bound suffering from Muscular Dystrophy MD)Almost a month back we had pizza lunch together, with Mahima Didi , Mohan Achachen and Appu their younger son (Appu's first time Pizza - and guess he didnt like it much :)), and at the end of it I asked to pack one Pizza for Unni who was at home. That day Mahima didi informed us that finally Unni has got an Automatic Wheelchair, we were very happy to hear that , as Anil had been telling Mohan and informing him about the various options of automatic wheelchair for Unni ..

Unni now is very happy to move around home on his own. Till then he had to be lifted and supported by atleast 2 peoples help. At school, there is no special chair or facility for him, he sits in a ordinary chair with no back support and by the time he is back home his legs are swollen, but he has no complains .. He likes going to school, and says he does not want to trouble anybody at school ... and i tell him, its not troubling anybody, you have the right to ask basic facility for you to study and sit comfortably ... and i stopped the discussion there seeing tears in his eyes ... So Sunday evening we went to meet Mahima didi and family -- Appu gave Ezekiel one his toy car to play , then Esther and Appu went inside to play their games , Unni came on his own in his chair, he looked happy - Then Mohan told us that this year, Unni performed in his School Day celebration - he gave a keyboard performance and it was well appreciated by the audience , I was so happy and excited to hear that and immediately I asked Unni if he could play the piece for us and he did :)

While he played , Mahima didi told me that this was his one of wishes, last time he went for School day celebration was when he was in Class 3 , after gap of 6 years he was attending and participating in the school celebration, though they could not take the new wheelchair to school as it is pretty heavy to be lifted, Unni sat on a ordinary chair supported with big cushions, he did not have any support to keep his hands to play the keyboard and somehow managed ... (Arms down he cannot move any of his body parts and his hands are also getting weak slowly ...) She then said that her transfer (Didi in govt job) is due and she is trying for another 1 year extension at the current place on compassionate ground(she has to do this exercise almost every year)Mohan who is also in govt job tried getting his transfer to Trivandrum but that didn’t happen , he travels every weekend and whenever possible to Trivandrum , both of them asked us to pray that Mahima's extension would be granted ... I was so angry to see their plight ... it seems for Employees with Mentally challenged children Transfers are spared , but not in Unni's case unless the sitting officer is convinced - and every year Mahima and Mohan have to explain the whole thing ...Unni was diagnosed with MD when he was 5 yr old, now 14, he needs more care and support, Mahima almost cried (She knows she wont get all the years with Unni and his muscles are weakening ...) By this time Unni finished his song , we all clapped , he smiled and moved his chair and all of them (Unni, Appu , Esther and Ezekiel) went to unni's room for playing game ...

This Sunday was the first Sunday of the Lent Season , and the reading was about the first Miracle Jesus performed in Cana - turning water to wine , Unni believes in miracle and no wonder is always so cheerful and hopeful, wish i had faith like his, wish I could see the miracles which happen everyday , every moment , miracle of love , miracle of life .......

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