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Saturday, March 16, 2013

The most difficult decision I've ever made, so far

There are, generally speaking, three types of special needs parents. The first type are the extreme optimists, the movers and shakers, the ones that leave no stone unturned and spare no expense to get as close to a cure as they can for their child, and to help their child achieve his or her potential to the max. They don't factor in the toll it takes on their family, their finances, or their own sanity; their disabled child is foremost in their lives and takes precedence over anything else. I'll call this type "A". At the total opposite end, you have "C", the ones who are extreme realists; they know that there is no real 'cure' for their child's disability and they don't want caring for their child to impact their family severely. These parents don't exert themselves too much for their child; they get as much help as they can, sending their child to every respite program, summer camp, send their child to the cheapest/free school program, even if their child will not make progress there. Their sole aim is to keep their child comfortable and happy while trying to continue their lives as smoothly as possible. They don't want the rest of their children to suffer too much, and/or they are not capable emotionally and financially of throwing themselves into the width and breadth of focusing on this one child at the expense of the family's general sanity. Then you have the "middle of the road" kind of parents; the ones who do extensive research into their child's disability and try many different things, but they are realistic about the impact it has on their family and on their financial and emotional resources and don't overextend themselves to the point where it affects their lives into exhaustion and depletion. I'll call this type "B".

I have come across many As, Bs, and Cs even before Dovi's diagnosis. I have found that most special needs families start out as Bs, and eventually the toll on their family is too much and they slide into Type C just to survive. I've also met a few As; the chidren of A families are the ones who go the farthest, but many type A families eventually crumble and must slip into B or even C mode - especially if their child does not end up making as much progress as they had hoped.

Wednesday, March 13, 2013

The 2 craziest weeks of my life, Part 2

Continued from the previous post:

As I saw Chaim playing in the hallway, I was disturbed to notice that his gait was extremely weird - his feet were wide apart and he looked uncomfortable. Before heading for the shoe store I took him to my mother to check what was going on. I did not like what I was seeing. There was considerable swelling in a pretty sensitive area, which was obviously making it difficult for him to walk. I called his pediatrician and asked if I could come over. Luckily, they were able to see him, and the pediatrician's office is about 2 blocks away from my mother's house. On the way to the doctor I checked the shoe store - closed. I wasn't happy, but it turned out to be for the best. The pediatrician checked Chaim and his eyes opened wide in horror. "You have to see a urologist immediately," he said.

Um. What? How could I see a urologist immediately? It was 2 p.m., I was laden down with shopping bags, starved, Dovi was due home in an hour, and there are no urologists in my neighborhood. The front desk staff set to work immediately burning the phone lines. They set me up with a urologist at Mt. Sinai Hospital, called the emergency room, and told me to go right away.

I felt cold and hot all over. This could not be happening. WHAT????

Tuesday, March 12, 2013

The two craziest weeks of my life, Part 1

I apologize for the long lapse in posting. I started writing this post weeks ago, but then events happened which were larger than life, overwhelming and all encompassing and putting things like blogging on the back burner. I was ready to put this blog to bed for good. But thanks to the sweet, encouraging support from you, my faithful readers, I pulled out the half finished post and completed it for your reading "pleasure".


I'm about to detail two weeks, the two hardest, zaniest, unbelievable weeks in my life. (Note: that is, until the past month, which were emotionally infinitely harder.)  It starts on January 16 2012 and ends on January 29, 2012. You know how you can be so incredibly, insanely busy, that you can't imagine just one more thing cropping up on your to-do list? And then something even bigger happens, obliterating everything you're so busy with, forcing you to pay all your attentions and energies to the crisis at hand? (I just experienced something similar; my school choice crisis went on the total wayside with the unfortunate family tragedy we had.)

We absolutely hate when that happens. But sometimes it's necessary, to help change our perspectives and focus and realize what's really important in life and what's just trivial.

Monday, March 11, 2013


I'm overwhelmed by the amount of supportive comments to my previous entry. I want to thank you all. I didnt know how I have such a huge anonymous audience who are actually genuinely interested in hearing more of Dovi's story. And there is still so, so, so much to tell. So I've decided to still continue the blog. I'm not sure when - it might have to wait 'til after Pesach - but bli neder, I am not retiring the blog yet. Thanks so much for all the support.

Sunday, March 10, 2013

Still in limbo

I'm debating the future of the blog .I have completely lost my initial excitement to write; it's becoming tedious, especially as the next few entries are emotionally wrenching. I'm not sure I'll continue; it's not bringing in revenue, and since we're probably backing out of the super expensive school - we simply cannot afford it - and donations are not coming in anyway - the blog is not as necessary anymore as I thought. I am leaving it up here since it is definitely helping many people who stumble across it. But for now, just stay patient as I figure out what I'm planning to do. I might write new entries, I might not. Check back once a week or so if youre not on the RSS feed, and let's see what happens. My writing muse might return; it might not. Who knows.
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