The silver lining in all this has been a few new additions to Team Noa (most significantly Joy Lynn and Jenny), and the opportunity to revisit some we haven't seen in a while. It really has been a team effort; sometimes including a tag team of 3-4 sitters plus me and Ben to get through the day. Overall, Noa has handled it quite well - and why not? We're all at her command. She misses school when she can't go and will repeat "skoool skoool skoool" if she's been a days out. But for me and for Ben it's as difficult a stretch as we've ever experienced.
Usually I try to keep this blog to things directly relating to Noa, but in light of that last amazing statement I'm going to veer slightly off track here. Considering all we've been through (everything with Noa, plus my MS and Breast Cancer) can it really be that this is the most difficult stretch??? Yeah. I think so.
Without going into all the gory, tedious details - we have to reserve and pre-pay for a wheelchair car service every day ($114/each way). The City will reimburse us but we have to fill out weekly forms and get them in on time - of course 4 weeks in we have yet to see a cent of reimbursement. They have a voucher program, but for those in wheelchairs, frankly it just would take forever to call all of the services to find one with an accessible van that will actually take the voucher (they don't all really take it when you call).
If Ben and I can't go, then we sent Noa with a sitter - which is really great and we certainly can't complain about that because we're so grateful that she can get there. But that tacks another $100-plus to the cost (because the sitter is then up there all day), and although we're going to try to recoup that money from the City, we have no guarantee that they'll pay up (they are supposed to provide a matron for transportation). SO everyday that Noa goes to school we're fronting around $350 BUCKS! She hasn't done a full 5 days since this started, but even if she just does three days over $1000/wk - and there is no end in sight for this strike because the side are not talking and not planning on talking.
Then there was the process of having to find and interview all these new sitters - since most of the folks already on the team didn't have day times available at all. The amount of time I spend finding, interviewing and training sitters and getting cars in place, and filling in forms and badgering the Board of Ed for relief is crazy. Every day is a whole new battle.
Add to all this, Noa's been having issues with leg cramps so we've been trying to get that taken care of - connecting all her various doctors to all get on board with some muscle relaxants to help her out until May when we can get in to see a specialist for injections to help keep her legs and feet from totally twisting inward and impeding her ability to walk without pain.
Oh, and the Cobra insurance Ben and I have been on runs out in April, and some other stuff with the Bd of Ed that I'm not even going to go into yet AND I'm scheduled to go to San Francisco next week for work. I'd bag it, but we need the dough to pay for all the sitters - though I know it will be stressful week for Ben being home all alone.
Speaking of stress - as many of you know, all this stress and anxiety sent me to the hospital on MLK Day with chest pains (at least we hope that's what it was). Since then I've been exhausted as hell. I wasn't having a heart attack, but still need some tests to make sure there is nothing else going on but I've continued to have the chest discomfort and exhaustion. I have a battery of tests with a cardiologist on Thursday, so wish me luck on that.
I could go on, but why? The point is - it's been a very stressful month. The Land of Noa is a beautiful place, but it takes a lot to keep it going!!!
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