Ups and Downs

Last night we came back to NYU for some follow up video monitoring. Over the past week Toren has started to have seizures again. They are mild, compared to his past history... but have been increasing in severity and length. He remains conscious during them (which is very good news), but one's limbs shaking for 10 - 15 minutes again and again during the day and waking you up at night is exhausting, scary and painful. On Sunday night he seized for over an hour on and off.

When we got here he had a CAT scan and then got hooked up to the video EEG. The drive down took quite a while, and thank goodness for David calling me and insisting I had company on the ride... it would have been too much to drive with him seizing next to me, and not having someone to hold him and comfort him. Helaini, of course came to the rescue, traveling down, handling frequent rest stops with me... seizures - equal frequent bathroom breaks. She also administered his meds on the way down, and mine (chocolate - not covered by insurance - go figure, it must be because it is preventative not just curative)

Kristen was wonderful yesterday. She was so supportive, calm and level headed, and is going to care for 'the four legged kids' while we are down here. Tara was really good at helping me keep it together yesterday as we figured out what was the best course of action. I am so blessed to have friends and family to help strengthen us. It is so important to know that one's back is covered. I slept at the hospital in a cot.. it was just fine. I have already received reminders that homes are open to us, and that dear friends are available day and night to talk through things, or just to listen and comfort.

While I know that this could very well just be a bump along the path to recovery, it is very painful. Toren is so good natured about it all, worrying more about disturbing my birthday weekend than his own discomfort. He keeps apologizing for the upset and concern. We assure him that he is a beloved priority, and that he merits our continued support. I am drained and hanging on. While I feel loved and cared for and held up by all of you who love and care for us, I equally feel very alone... Helaini is so brave and strong, but it is tearing her up to see me saddened, and to see Toren struggling. She is only 21 and it is so much to deal with. I feel the weight of single parenting most strongly these days, because in the end the choices the decisions fall on me, I can reduce their weight by leaning on those who love us, on resting into the cushion of faith when I am too weary for human comfort. But I would like to be able to let go a little more... ahhh well - not today Scarlet

The medical team has been wonderful, readily available, and supporting us during the week and weekend. I am confident we are in the right place with the right people. And hopefully we will know more sooner rather than later, and that what we know will allow the very determined Toren to continue along his journey of recovery.

Well... enough whining... it wont fix it... sky has lightened and in sharing and reaching out I feel your love holding us up. Today is yesterday's tomorrow - it will for sure home some unplanned joys.

with love

m