Another birthday coming up and over a hurdle

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.