The next step

So we spent Friday afternoon at NYU getting more detailed information, which allowed us to confirm that surgery is the right option for Toren, it is actually the only real option, other than waiting for the next seizure and the damage that it could cause. The doctor was wonderful and clear, very open about the complexity of Toren's condition and of the complicated nature of the surgery. Still we move forward, and pray that Toren's guardian angels are well enough rested to get him through this next stage.

We are all scared and anxious, but equally determined and sure of the path ahead. Helaini being with us for the consult made the world of difference to me.

On Wednesday Toren will have more MRIs and on Thursday he will have the Wada - a brain angiogram.... We are lucky enough to have the Rudin's apartment to stay in on Weds and Thursday nights, if all goes smoothly we will be home on Friday in time for Shabbos dinner.

Details around surgery dates are still unresolved, hopefully we will know more today. If we are very fortunate it might be in July - otherwise we have to wait until September, which for so many reasons would be challenging for us all. Still it is clear that these things unfold ways beyond simply the obvious to my mortal comprehension.

As of now they will do a grid and strip study on the left side of the brain, with depth probes in the three specific areas that are suspect on that side... that will be the first surgery, then we wait, and hopefully the data gained allows them to do a surgery that will either eliminate the seizures, or at least reduce their severity. The doctor candidly said he has about a 50% chance of a successful outcome with this surgery. However, we all know statistics are one thing and reality is somewhat different.

Right now we are doing what we can to be as organized as possible for the next long haul. Life is sometimes about gathering good memories around you to cushion the challenges. So Friday night we got together with the McNeills and the Westchester Zobels and enjoyed a chatty dinner. Saturday we lazed around at Eve's and visited with her and Elliot, enjoyed a lazy shabbos lunch in the mid afternoon. Eve and I took a walk and caught up. Yes later we all dipped in the pool, and soaked up some rays. Helaini and I watched movies on Saturday night. It was good to just have a change of scene.

Yesterday included picking up a poorly Winston, he has a tummy bug! He is a little under the weather. But cheerful enough, in his sweet puppy way. We all went to the lake with Mummy later in the afternoon, and it was perfect. Toren swam quite a bit, he is determined to be in the best shape possible going into the operations.

This morning I did my usual early morning walk, having been awakened 3 times during the night - poor Winston!

Then we went off to daven at Shul... it was so lovely to be in our routine again.

This is a strange time for us, an in between time... we are trying to stay present, to soak up the rich sweetness of our lives, while looking ahead at a tough journey and planning for it, without allowing it to diminish the joys of today. We are in a limbo, and we are so grateful for the love and support we receive. Everyday another blessing unfolds, or several. On Friday we got to see a new friend, another family traveling a similar path. There is a unique connection built between those who sit and watch and pray for the well being of their children, for closed doorways to pop open by the miracle of skilled medical teams. It is hard to find words to express it all... but in uncharted waters, the similar journey of others allows specks of light to pour into one's own path, and then walking forward into uncertainty becomes a little less impossible.

Blessings to all

Martina