I created a lot of ruckus when I wasn’t able to register for the Mumbai Marathon of January 2012.
After coming back from my Diwali vacation, I started to look into their official website more closely. Somehow waiting for more than 14 months for the next marathon was not on my agenda. There has to be a way, I thought and there was! One could get registered for the marathon by donating for a cause to any of the NGO’s listed on their website. Here, was my chance. I clicked on the first name on the list…the charity bib status was “Sold Out” in red letters. Shit! I clicked on the next, and next and next….they have more than 213 organizations registered, wasn’t even one available? Just as I was losing hope, there was “Available” written in green. Yes! Actually, I did not mind as to which NGO I would donate as long as I got my bib. But, when I saw the name of the organization, I couldn’t help but, smile. God never ceases to amaze me. It was the “Epilepsy Foundation”….my son was an epileptic as a child!!
He was barely 6 months old, lying and playing on the cot. He started crying for no apparent reason. I lifted him up and tried to calm him, when his eyes rolled back and so did his head. ?? I just shook him. And, he was ok, just like that…! He seemed a bit tired and he slept. I thought this was one such incident and did not mention it to anyone.
This happened again after a month. My friend was with me that day and she freaked out more than I. We did take him to the Paediatrist. Nothing could be established, but the doctor told me to bring him immediately if the episode recurred.
Three months later, now 9 month old, when the crying began whilst he was playing. His dad picked him up and laid him down on his lap. First the twitching, then the jerks and a full blown seizure to the left side of his body. All I can remember now is that I picked him up and ran to the doctor’s clinic which was just across the street. I could feel my baby go limp in my arms. He was semi-conscious.
Series of tests began. My baby looked so vulnerable and tiny. The CT scan machine seemed to swallow him up. Wired to the EEG monitor with so many electrodes coming out of his head, the scene was surreal to experience.
There can be many reasons for a child to be an epileptic. Even insignificant things like worms in the intestine, teething, which is a natural process and of course a fall, high fever …anything can cause a seizure. But, fortunately he did not have any attacks while on medication.
His medication was stopped after 3 years. And then, a relapse! One night he just did not sleep, he was disoriented and lost. There was a blank look in his eyes and he failed to recognize me! That was an “Aura” of an epileptic seizure. Now, he had to take medicines for 5 more years.
He started school, and when he was introduced to writing; he used to write with both hands, sometimes right and sometimes left. I thought he was ambidextrous. But, I failed to recognize it as his confusion; it was an indication that he was dyslexic. This was limited to his academics only. It became more pronounced as he got to higher classes. He was also a borderline ADHD – attention deficit hyperactive disorder. He was fidgety, lacked concentration, could not sit at a place and always hurt himself. The doctors denied any association between epilepsy and his learning problem.
Today, almost four years since the discontinuation of the medication, he is fine. No ADHD at all. His learning capabilities have improved a lot. Academically, he is poor but, there is more to life than academics. He is healthy, that is all that matters.
HE has a way of connecting the dots or placing the pieces of the puzzle in such a way that the big picture becomes visible only when the last dot or the piece connects. I, donating to the Epilepsy Foundation became the Big Picture. It makes complete sense now.
P.S. – I have signed up for the marathon, awaiting confirmation.



Hello.
ReplyDeleteThank goodness for your determination Janu. If you'd have given up your search, you never would have come across the epileptic foundation. God does indeed work in mysterious ways.
I can't even being to imagine what you went through the first time you noticed your son having fits. I know when I saw someone have one at school, it freaked me & a lot of the others out because we didn't understand what was happening.
I wish your son a happy & healthy life. I hope you get your marathon confirmation too.
Great post.
Thanks for sharing & visiting. I love hearing from you.
For ref:
Eleven Roses And You
I am glad your son is out of it now,as a mother I can understand as to what you must have gone through,and as you said,as long as he is healthy,nothing else matters.
ReplyDeleteWishing you and your family all the happiness in this world.
Janaki, seems these medicines do not work n we become slave to modern medication n docs unnecessarily.
ReplyDeleteM glad to know us son s fine n look how every action s planned by God, u cud nt register at marathon n land up donating fr a cause u wud alwys love it coz its a part f ur life...
Janaki u r a woman f high spirits n i love tht u r positive for ur son's growth!
May god bestow all his love n blessings today, I sincerely wish from my heart....
Love
Mani
What a wonderful post, I am so happy that you kept clicking and found the epilepsy charity, what a bonus for you. I am happy to hear your son is doing well, being happy and healthy is so much more important than a lot of people realize. Good luck with the marathon...<3
ReplyDeleteYou never fail to inspire me. There is always a way, which we refuse to find. All the best for the marathon confirmation. And am glad your son is okay now. God bless :) xx
ReplyDelete1st of all, all the very best for your Mumbai marathon selection & then the marathon itself…
ReplyDeleteI know what all you went thru, as since past 2 years am also going thru same sufferings….Each time Peru has a relapse, it's different.
Initially she got all that jerks, foam from mouth etc, but after medications it stopped… but in Feb. this year when she again started having fits in her sleep I felt shocked & helpless...
Since this time her symptoms were different from previous one I was confused…on consulting her therapist they told yes it's a relapse, & I was shattered...
It was due to anxiety of her father’s departure & also lack of sleep…Visits to doctors, change/increase of medicines helped…but along with it came its side effects like drowsiness, behavioral issues, tantrums etc…
Again on doctor’s consultation we decided to stop the medicines & watch…luckily the episodes did stop along with her behavioural issues…
But since past 1 month again she stared to have her episodes with different symptoms this time…this time suddenly while playing she gets lost in her own world. She doesn’t make eye contact or respond to her name being called…
So now again waiting to get doctors appointment so as to ask what has to be done…all this even when she is on medicines foe epilepsy…
Never in my life have I felt so helpless…all parents whose kids have epilepsy will agree with this point. We feel most weak & helpless when kids get these episodes of fits…
Because all we can do is wait & watch for them to come out of it on their own… what I mean to say is if a child is hurt & bleeding, we try to stop the bleeding by applying ice, if child has fever, we give medicine & try to bring temperature down, if child has vomiting or loose motions we give medicine to control it… but when a child gets fits all we can do is try they don’t get hurt & nothing else as they have to come out of that trance on their own…we can do nothing to bring them out of it…that’s when we feel the helplessness & defeat…
Anyways Janu nice blog, all the very best for your selection…& wishing Nishu good health & life…
Andy, Alpana, Mani, Jan, Shreya....thanks for understanding. Hugs.
ReplyDeleteAparna - you are an inspiration. I am sorry to hear that Peru had a relapse. As a parent and as a mother I know what you have been going through, what you have sacrificing, your patience, determination...hats off to you lady.
It is like everything has come a full circle. And what better reason to participate in a marathon for the Epilepsy Foundation when you have gone through it all with your so?Bravo to you Janaki. God bless mothers like you
ReplyDeletethanks janu.. :)
ReplyDeleteOh, what a touching post! It showed what a great mother you are, Janu,and I humbly bow to you! I wish your sweet son all the best in the world. Marathon? What marathon? You have won the most arduous marathon of bringing up a child so fondly!
ReplyDelete-Portia
It's amazing how He crafts things for us, Janaki, even if we don't see it all the time. I'm so glad this worked out so well for you - it makes your marathon ever so meaningful! Let me know when and where I can hang around to cheer for you! ♥
ReplyDeleteGod is so good and there for us all the time!
ReplyDeleteI could so relate to your post, Janu, as I had an uncle who was severely epileptic. I'm glad your son is doing so well now and, that you were able to register for this marathon.
It will mean so much more for you now . . . :)
Blessings to you and yours!
Janu, Wow! Isn't life amazing how it steers us in the right direction. We struggle and fret, yet life moves steadily forward aiming us toward it's goal to make all things fit in somehow.
ReplyDeleteReading about your son's struggle with epilepsy was frightening. How small he was when it began and how brave you had to be. I'm so thankful that your boy is symptom free. I have a son with asperger's syndrome. He's thirty and quite gifted in many ways, yet struggles so much with social situations. They never seize to be our boys do they. Thanks for this post...and good luck with the marathon. You're an amazing lady!
Janaki so gald that your son is fine now. I can understand as I was diagnosed with seizure disorder in 1991 and had to take medicines for 7 years. I am fine now and am cheering for you both. I love the cause you are running for, will be there, just let me know when :)
ReplyDeleteI can't imagine what you've gone through as a mother...it must have been so scary. I am so glad he is doing well now though. I hope you are confirmed in the marathon! ~many blessings
ReplyDeleteThanks everyone for sharing, caring. It is such an overwhelming support.
ReplyDeleteSulekha and Corinne...it is wonderful that you want to cheer for me...will let you know. Your wishes are with me that is more than enough.
I for one do not think it was a co incidence . You had to go through the stages... your conviction in running for the marathon was strong but it could not go without effort!.
ReplyDeleteAm really happy for you and for you son....
i find this so inspirational. health is so much more important than academics. i am glad your son beat epilepsy like he did. he is blessed to have you as his mom.
ReplyDeletegood luck with the marathon.