HAPPY NEW YEAR 2019

Hey everyone! Wish you all A very Happy New Year!!
New Year brings with it new hopes, dreams, aspirations and a mind waiting to begin afresh, anew...
So with these feelings we have stepped into another year and we were very blessed to start it with the blessings of The Almighty.
This year I hope Vineet will put some of his time aside for his first year graduation studies.As for his musical journey, he has decided to continue his Octapad and Guitar classes, but not the Keyboard class. No amount of persuasion could change his mind, so we've left him with his decision.

           This new year started on a very very HAPPY note for us! We got to meet my long time (read over 10 years!! ) online friend , Sita Kumar and her family, all the way from California , US. We connected via " Orkut " (THE Happening social networking site before Facebook!). Yes, we connected even before Facebook via the #spinabifida group therein.

Sita has a 16 yo daughter with Spina Bifida and boy, she is one sassy girl I know now 😂. It was a different thing to know Sita, her 'Super-hubby'Vinesh, her 19yo son Suraj and of course, Isha , in person. We met in Kolkata and though we only had one day , it was enough to connect and bond like family. With Sita, time spent was like old friends, but thats another story, and this blog is about Vineet..
Of course, time is never enough with friends... 😕

We had dinner together ,and cussed the inaccessible places together 😈.

 I was quite ashamed of how inaccessible public places in Kolkata was even now in 2019 😖 I did what I always do - took pics and posted them all over the internet.(Wait for a blog on the 2 public places we went to in these 2 days and how Inaccessible they were!) Thats the least I can do to raise awareness...PLEASE PEOPLE, try and put yourself in the shoes of the disabled for one day and you will know how difficult we all have made their lives by #inaccessiblity . IT IS NOT THEIR DISABILITY WHICH MAKES THEIR LIVES DIFFICULT.
 ITS THE INACCESSIBLE PATHWAYS

As I write this, Sita is on her way back home to the US and we are wishful of meeting again!! Amen to that!
It still seems like a dream to me now...

Sita and Vinesh, you guys are heroes without the capes and we were humbled by your visit...

So much to learn from you and the kids! Much love... 💖💞💗

An Angel in Vin's life - MARIA LINNY THOMAS

It was 23rd June 2009.
 Me, Vineet and Papa were on a flight to Bangalore. To meet "Linny". Why? Coz Linny was flying down from US to India for her Annual India trip and Bangalore was a good meeting point for us for her break journey. So why were we meeting her? She was bringing down with her a spare #Quickie #wheelchair which was lying unused at home.With all its spare wheels and the heavy batteries.Yes, all the way from the US - ALL of that heavy stuff!! For whom? For Vineet, son of a friend she had barely known on a social networking site.Why? Because (Late)Teena ( Linny's daughter) had #spinabifida just like Vineet. And though Vineet and Teena were supposed to meet in this meeting, fate had it otherwise - Teena went to her heavenly abode just a month before on 18th May 2009.

I still remember 18th May 2009.

Linny and me had spoken 2 or 3 times over phone before this. Teena was sick and in hospital and on 18th evening, I felt like calling  up Linny, and when she answered, she was crying. Teena had just left. I was dumbstruck. Linny said she'd call me later. I was heartbroken... I had been looking forward to me and Vin meeting her. A sweet , innocent soul went back to where she rightfully belonged..That night I couldn't sleep. I felt scared...for Vineet. I still do. Whenever I know of young people with #spinabifida flying back... I die a little with them...

Lets just move on...life is such.
So when we reached the hotel where Linny and her family were staying, I was met with the warmest of smiles and hugs from her inspite of her heartbreak. Only then did our husbands heave a sigh of relief! 😂Two men who were loving enough to listen to their wives - one bringing a heavy wheelchair all the way from the US and the other equally believing in this good soul. We talked, we shared, Vineet got a brand new wheelchair (though he was a bit scared of the battery driven wheels, he was only 10 then) and today that wheelchair is still his Favorite!! 😃 9 years back, a #Quickie wheelchair in India was a dream. I'm very happy that today, kids in India have a great variety of wheelchairs to look forward to, but back in those days, it was a dream to have a kids' wheelchair here. Here's the pic we clicked 😍

We became like family. We were there only for 2 days and then we returned. Since then, Linny has been Vineet's guardian angel. She made sure Vineet had his year's stock of pull-ups and adult diapers when they were unavailable here in India.Along with that stock was always gifts for him and Vineet's sister and sometimes me too! If she wasn't coming down, she would send it via someone to India who would then mail that huge box to us! ( I still don't know how she did it! 🙃 ) Only an Angel  😇can have so much love for someone who was never known to her! She has been there for us whenever we need help. She has our back. Whenever I need any suggestions regarding Vineet, she's always there with her genuine advice. And a few years back, when there was a baby with #spinabifida in our neighborhood who needed immediate medical care and monetary help too, Linny was the one who raised money for the baby's tumor and brain surgeries. I could go and on about Linny. (I miss her now that I'm writing about her, I wish we could talk , though we keep in touch by messaging, but we are both busy with our worlds and the opposite time zones are the main factor). 

But she's always there for me and Vineet. Like a Guardian Angel. 😇

I had started drafting this post a long time back, but I didn't know how I could write a post about her in the most befitting manner. After all , she's a very very special person in Vineet's journey and I know she doesn't do things in the limelight. She lets God see her right hand, not her left hand (Matthew 6:3)

I will end this post here by wishing my very dear friend Linny "A very very Happy Birthday" (its her birthday today 😊 ) and I wish you all the happiness in the world for being the wonderful person that you are !! We are blessed to have you in our lives 💞 💖💗💕💝

#IFSBHCON2018

The 28th International Conference on Spina Bifida and Hydrocephalus #IFSBHCON2018
was organized by #InternationalFederationforSpinaBifidaandHydrocephalus #IFSBH in collaboration with the local body, Spina Bifida Foundation India #SBF.
It was held for the first time in Asia in New Delhi, India, from 10th August to 12th August 2018. It was a resounding success and Vineet and us were privileged to be a part of this important Conference.
There were representatives from Belgium, Switzerland, US, Canada, Norway, Uganda, Ethiopia, Zambia, South Africa, Sri Lanka, Taiwan, Malaysia, Spain, Tazikistan, Vietnam among others(25 in all I'm told) and of course from various states of India.(Sorry if there is something wrong in the list, but this is what I've gathered) 😬 The venue Le Meridian in New Delhi was as impressive as the participants. Parents of children with SB, adults with SB and high profile Doctors and Surgeons held parallel as well as plenary sessions relating to the numerous topics that Spina bifida brings with itself.

10th August 2018, Friday
When we checked into #LeMeridian #NewDelhi at Connaught Place around noon, we were captivated by the beauty of the place. Lunch was being served and after lunch,we proceeded to the Conference Room just beside it. Here I would like to mention that the Conference Rooms in Le Meridian,   New Delhi were in the basement at minus one floor and to reach that, you had to use the Service Elevator for wheelchairs. It wasn't much of a problem except that during those 3 days , we sometimes encountered the pantry car or the laundry car.
So, going back to my post,
A session was going on which was in collaboration with WHO and Neural Tube Birth Defects and the President of the International Federation for Spina Bifida and Hydrocephalus, Dr Margo Whiteford had already started the introductions. I saw some familiar faces (from Facebook and Whatsapp)and we met for the first time in person. It was like as though we had known each other since long. We introduced each other to others as well and settled down for the sessions which carried on till evening. I won't go into the details of the sessions here as the post will become very long. However, for those who might be interested, HERE 's the link to the programme brochure as put up on the Facebook Page of the IFSBH.
In the evening we had the very 1st National Committee Meeting of the Spina Bifida Foundation of India and as many as 13 State Chapters of the Foundation were formed to reach out to all states of India in creating awareness and preventing spina bifida which is still unknown about in our country. And if I might brag a bit, I've been nominated to convene the state chapter of West Bengal. A new begining... I'll try my best!

Here's the link to a few pictures I posted on Facebook (which is why the quality is not so good) - https://photos.app.goo.gl/tj5EDSBzy8uaSRej7

11th August 2018, Saturday

The next day our sessions were scheduled to start at 8 in the morning, but everyone had had a tiring day before, due to travels and such. So we finally started a bit late and I was eagerly waiting forward to hear from a host of very impressive speakers and #IraSinghal was one of them. I sat through each of the sessions coz I was very interested in each of them and the topics were as varied as the speakers. I was even asked to monitor one of the sessions and I gladly obliged to my utmost pleasure. 

     Towards the evening arrived #RaveenaTandon , a famous Bollywood star, and also the brand ambassador for #spinabifidafoundation . She is very supportive of all the events that the Foundation hosts and has a very golden heart. She even obliged all the kids with a group foto.

         After she had left , we had a group foto and look how diverse we are. I feel empowered to be a part of this big and beautiful family.

         That evening we had the Conference Dinner and I had taken permission from our Founder Dr Santosh Karmarkar, for Vineet to play the Octapad for the guests. And boy did he play! Vineet had accompanied us to the Conference only because we told him he would be playing for the guests. He played and enthralled everyone and they all became his fans! That evening , everyone came to know about Vineet the musician and I couldn't be more proud! 😊 Here's the video -

And here's another video to show you all how much we enjoyed that night with the DJ and danced away our blues and worries..😃😍
https://www.facebook.com/jacqueline.r.victor/videos/10217441007921877/?l=9166364116643071576

I for my part had gotten very very emotional that night..but that another story..

12th August 2018, Sunday

Today was going to be the last day of our wonderful Conference and it was a bit heartbreaking, coz we were just getting to know each other and so were the kids. Today there was a tribute to Mr #JavedAbidi , the pioneer of Disability rights and advocacy in India and he had Spina Bifida. May his beautiful soul rest in peace 🙏. Also there were 2 videos of a child and an adult with Spina bifida in India. Then at the very end I gave my speech for which a topic had been given to me beforehand - "What I want to tell my Doctor - A Parent's perspective"

Here it is - https://www.facebook.com/jacqueline.r.victor/videos/10217373013222052/?l=4828727102902456145

It was finally time to thank and say goodbye to each other and even then, we couldn't finish. So much to say and share and so less time! Here's hoping that the next National Conference will be longer and we will spend some more quality time with our new family in India.😊

So Thankyou once again for joining Vineet's journey here, looking forward to more happy times with my boy!

(And please do let me know in the comments if I've made any mistakes or do write to let me know what are your thoughts, I would love to go through them!)

Another milestone ! Vineet passed his Class 12 Board exams!

So now in the month of February, 15th February to be precise, Vineet's Secondary School Board exams were scheduled. He had a total of 7 subjects to appear for and he needed to pass in 4 of them apart from English Language and Literature which were compulsory.

Like before ( during his Class 10 Board exams), he was provided with a writer from a lower class. We waited for his results patiently for about one and a half months and on     May, the results were declared. Vineet had managed to pass! It was a great feat as this result was all his own hard work. Vineet is an intelligent boy, but has problems coordinating his learnt studies into answers for an exam. Orally he has no problems, but it's tough for him to construct and write an answer for exams in the way it is wanted/required. Nevertheless, we as his parents and Vineet too was happy that he had passed. Just passed.

Now came the important decision to be made- whether he would continue with college or not. Vin had already decided that he would not pursue studies anymore and concentrate on his music classes. So I enrolled him for his keyboard and guitar classes nearby.

Some well-wishers suggested long distance education for Vin as it would enable him to have a college degree as well as his health would not be affected by regular college. So we are thinking of going ahead with this .

So that's the latest happening in Vin's life . Thank you all for being such an important part of Vineet's journey.🙏

HAPPY NEW YEAR !! (SORRY, I KNOW I'M LATE ...)

Hey everyone! Wishing you all a Very Happy New Year! I know its a bit late in the day,😛🤦 but this being my first post for the new year, I had to wish first ...
So I think I left the story about Vin's broken leg incomplete. I shall continue now.
After about a month,  on 25th November 2017 (Saturday), we went for his X-ray to check if things were okay,  and we were pleasantly surprised when the technician told us that Vin's leg was perfectly healed!  He suggested we call him in a day or two to remove the cast. But papa said he'll do it himself! So next day in the evening,  papa removed  his cast. The main reason for hurrying was that Vin was going to perform in his School's Annual Function on the following Tuesday. It would be his last performance in school , and he as well as his Band friends didn't want him to be left out. Vin even went for the final rehearsal a day before with his legs in the cast! What else can he do for music! 

So after removing the cast, there was a problem. His knee wouldn't bend. The doctor said it would move only after physiotherapy for 3-4 days. But Vineet being Vineet, he still went for his rehearsals after 2 days with a knee bent at 30 degrees,and not 90 degrees🤦, with a tool at his feet. I hope I get the pic/video of that rehearsal when this post is ready😅

Concert was fabulous and Vin had a great time playing with his band, though I was worried about the leg. So as soon as his song got over, I brought him back home to his leg settings.After a week or so with regular physiotherapy, the knees were finally bending as before. Praise God! 🙏

Here's the link to the video -

https://youtu.be/g4XsWfzGV54

Accident ! Vin got a fracture in his left leg...

Today being the third day without fever, I can safely blog about this untoward incident. So to go back a little,  on 10th October,  there was a small cyclone crossing over us and it led to flooding in our area which is one of the lowest in our town. No matter what the civic authorities do,  we are the first to get flooded invariably. It has become our way of life. So as usual we removed all that had to be removed from the lower parts of our cabinet, etc and went off upstairs to the first floor where Vin's grandma stays.  There we waited for the water to recede from the house so we could start cleaning.  By evening when the house was all set,  Vin said he wanted to go back down.
There at the last 2 steps,  was a little bit of water and even though I was right in front of them, I couldn't stop Vineet in his dad's arms from slipping and falling with a loud thud. For a moment I didn't know what to do. Then other members rushed and helped Vineet and his dad. We checked them both for injuries, especially his dad coz we thought he might have broken something. But thankfully he was okay by the grace of God😇🙏 Vineet also looked okay. But he was shaken!
Then before we were off to bed in the night,  Vin got a light fever with chills. I brushed it lightly and went off to bed. The fever went away early morning but came back later in the day. I gave him paracetamol. The fever went off and came back just as its effect wore off after 6 hours. So naturally we took him to a doctor who prescribed medicine for flu and cold which was in the air. He also suggested we do an x-ray of his chest as he was coughing badly. Next day as we changed him to take him for x-ray, we noticed a big bulge just above his knee on the left leg. Something was definitely wrong there...  The x-ray confirmed our fears- there was a fracture in the femur bone just above the knees . And the fever wouldn't leave. Next we consulted an Orthopedic who prescribed some more calcium medicines along with a knee corset for Vin. 7 days passed and the fever wouldn't go. Then came the Urine culture report and it showed e. Coli infection. So now there was a UTI (Urinary Tract Infection) as well. So we consulted another Doctor who prescribed Antibiotic Injections (twice daily for 5 days!!) and also casts for the legs. She rightly observed that since Vineet had zero sensation in his legs,  the corset could move and he would not be able to sense the pain and hence the healing would take longer.
    So to make the story short,  his fever went off after 3 injections and I still wonder if it was a very big coincidence that the fever came the night he fell and also the UTI occurred the same time? And the mild chest infection too...

Update (24th October 2017)

So today he finally got his casts on. The last time I saw casts in the family was when Vin's grandma had a fall a few years back. Please pray for Vin's speedy recovery.. Thankyou!
(Poor thing, he's going to spend his 18th birthday in casts...)

A short 'afternote' about our Europe Trip with Vineet

Phew!! Feeling quite accomplished now that I've finished documenting Vineet's trip to Europe before my memory gave way! 😜 So there were a few small things I wanted to point out to parents with a child as special as Vineet.

1. So when we came back I found that Vineet's SB site had a blister kind of thing at the bony part. Big mistake on our part - we had forgotten all about his cushion in this trip! 😱 It did not occur to us at all that his travel chair had no cushioning at all. We had carried it to Mumbai (and even left one in the hotel by mistake) but this time we forgot in the hullabaloo. So now we had to take care of this blister which ultimately burst and is now healed, Thankfully by the grace of God Almighty 🙏

2.  I don't know if we searched less or what, but it was so difficult to find a bottle of milk, just plain milk in there. They came in different forms and flavours, but never just pure milk. Quite perplexing...or maybe we didn't try to hard, eh 😏 Nevertheless, that one glass of milk daily was quite irregular for Vin and it made him weak. So if your child is having food issues, carry lots of them with you in portable forms. It would have done us well to carry small milk cartons from here. Next time! 😌

3. Lastly, while writing my posts I was also able to find a lot of exciting things about Italy - especially the " ACCESSIBLE GONDOLAS in Venice!!! I was soooo excited for Vin! They ACTUALLY have them!
Click HERE for the official link for demo videos and online official bookings and you can also contribute to them for making this thing happen!! I will be in touch with them... ☺




Have a look at this awesome video 😃



4. And it also makes me make a note about our very own First Indian Travel Company for the specially challenged - www.enabletravel.com

They also have a Facebook Page - https://www.facebook.com/EnableTravel/

I am still upset at myself  why I didn't come to know of them earlier... Nevertheless, I love their stories and their services ,and after #DeepaMalik our very own Paralympic Champion went for a Europe Trip with them , she has highly recommended their services. They are having an Offer going on at the moment on the occasion of the country's 70 years of Independence - you can nominate a friend or relative with any disability and send them on one of their #70trips without any worry at all! Isn't that a great initiative?!! We won't be able to go on another vacation so soon again 😁 but naturally, but if you want to nominate anyone , here's the  link - CLICK HERE  Those who will nominate will get a Rupees One thousand travel voucher from 'Cox and Kings".
And if you want me to nominate someone for this, please leave a mail to - spinabifidainindia@gmail.com

HURRY!!!!