I have been really bad about updating the blog very regularly. When I started writing this blog, I was hoping that it would help at least one parent/child. Based upon the calls/emails I received I hope that it has helped at least one life positively. When I finished writing all of the hardest phases, it seemed to be a catharsis. I was done shedding all the unshed tears, recalled all of the instances I would rather not and was moving forward. As I moved forward, the day-to-day existence did continue but we were all so positive that the worst was indeed past. And so it is I believe.
Convincing other parents that this route truly helped, that it requires time, patience, dedication and discipline is something that is really challenging sometimes. People will not really understand how they can dump their vegetarian beliefs for their child's health or how they could just take matters in their hands and not follow what the neurologist said even though their child may be suffering a great deal. Some truly have no idea how and why to resort to alternative therapies while others do not understand the medication aspect and how it truly impacts the brain. I think each one must find their path but in the process I do hope that the child is not at the point of no return. Someday maybe there will truly be a cure.
One of the superstitions I lived with until yesterday was not travelling back home on the 31st of December. This stemmed from the fact that V's first seizure was on the night of the 31st of December about 2 hours after we had arrived home from a long trip. So when my husband booked return tickets for our recent trip on the 31st, I was still wary. I insisted that the flight be booked for the morning. We reached fine, everything went fine and for the first time ever, V stayed up until midnight to usher in the New Year - and seems to have done fine so far. Yes, he did have a meltdown soon after waking up - his body still does not take to the changes well and continues to need his sleep routine but after the meltdown for a few minutes, went about his day just fine. To me that is a big step for him and me in this journey of life.
As V turns 11 on the 3rd, there is so much to be grateful for. His initiative in taking his diet in his hands, figuring out what might and might not work, coming up with various alternatives, recipes, understanding what and why he should and should not do things, my daughter's growing up and handling of the situation, my understanding and empathy for the children who suffer this way and what their parents may be going through... So much learning and so much more to learn....
The food stays more or less the same but V has learned several new options as workarounds and travelling is so much more manageable. Less to carry, less to worry about. He continues to struggle with being at a more mature level, making more friends, Math and his number concepts but the kid works really hard. It is sometimes so hard to see him work hard over something that should come so much easier but he understands why he needs to and continues plodding along, happy almost always.
And so as he turns eleven, I think of all of the various people who have had such a positive impact on his life, who have helped him (or us) in any way big or small, from the time he was a baby, through preschool and elementary (he moves to middle school in the fall) and who continue to look out for him, knowing that V is truly blessed.
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8 comments:
It has been absolutely wonderful to see Vinay's progress over the years. All your hard work and his perseverance is definitely yielding positive results. We wish him a very happy birthday and a happy and healthy year ahead.
Hi- I'm just reading your blog on night watch over my five year old daughter during her peak seizure window. We are one difficult year into life with e. The only med so far is trileptal but we are pretty unhappy with our medicated daughter. We started with meds out of fear, but having seen the worst are starting to really understand the trade offs.
Thank you for taking the time to share all your experience. Every word has value for us. You can't imagine how helpful it is.
Just stumbled upon your blog today. I have a 9 yr old son who started having seizures last year. After a trying year on medication, we are looking into alternatives. I plan to look over your blog for food choices. Thanks for taking the time to post all of this!
Thank you for your comment. I hope your son is doing better. The hope with this documentation was that it would help other children/parents going through something similar.
Thank you, Mitun.
Anonymous, you are welcome. I could not imagine when I wrote this. I wish your daughter the very best as well as you as you go through this journey.
After reading through your documentation, I understand and see what you have been dealing with over such a long period of time. As someone who has dealt with the same disorder, I also believe sharing your experience will only help others. I wish you and your son the best and look forward to your next update.
Hi, Smita. I wanted to know what will possibly happen to my son when he is in school age. He has Epilepsy for 2 years since he was 5 months old. He does not walk or talk. I understand how difficult it is to talk about it, yet you shared your experiences and feelings with us. I have asked our neurologist if my son will have language disability and learning disability, but I didn't get an answer. I think that your blog has some answers, although I know the consequences vary. Thanks and hope the best for your son.
Trileptal is an anti-epileptic medication, used to control the frequency of seizures.
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