I feel like I have just had the wind knocked out of me. As though someone has told me of a death in my family. That is the heaviness I feel in every molecule of my body at this moment.
I just received a phone call from our insurance company from a representative that told me that the ABA services we have been receiving in-home since May...the ones I worked my ass off to get for two years...were 'authorized in error and will not be covered past today.'
I am beside myself. I am sobbing and screaming out loud and have no idea what to do next. The other half is in a business meeting and will call me afterward, but I don't know how we're going to counter this decision with his company.
M is a different kid since our therapist began working with him. He is happier and calmer from the engagement she provides him each afternoon. MY life has been happier and calmer since she started coming here. Holy shit, you guys, I am FREAKING OUT over here.
Please, please let this be a bad dream.
I know it sounds dramatic, but this is so important to our entire family.
I am absolutely crushed right now.
Tuesday, October 19, 2010
Sunday, October 17, 2010
Community...I Want One
For those of you readers living around me in my beautiful, coastal town...fear not! I totally realize that I have a community here--and a damn good one at that. It's pumpkin festival time here again and even though the traffic sucks, the vibe is delicious and fills me with the warmest of fuzzies. I love this little town. I love how excited my children (well, I'm making assumptions for M here) get when they pass by all of the pumpkin patches. I love the pumpkin weigh-off and the small town parade. I love my friends. I have such wonderful friends in my life here; friends who always have my back when I need them, who are always up for a wine playdate with the kiddos, and who listen to me when I just need to talk. Of the latter, I sometimes wonder why or how they can possibly want to keep calling me or inviting me to things. Sometimes I annoy myself with my autism talk. So, thank you, beautiful friends, for continuing to like me. No matter where the wind takes my family down the road, I sincerely hope you are still a part of my journey!
But back to the part about wanting a community...we move around a lot. It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood. A good friend often jokes that we must be a part of the witness protection program. I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992. That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space. I'm tired of not knowing where I am supposed to be. It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here. Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is. I'm sure that sounds absolutely ridiculous. It sounds ridiculous to me just typing it. I guess I am having trouble finding the right words to truly describe how I'm feeling.
Another problem is the other half. I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging. Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past) Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him. I need a village, he does not. I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult. I find myself going to things with only B. M's disability makes outings like yesterday's parade a bit more challenging. And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately. Our family is often divided as I am aware so many autism family's are. But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.
The question of where to live for the long haul haunts me daily. What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers. But that would be because it's his friend and family base...his comfort zone we'd be returning to. As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants. I love the California lifestyle. I love how easy going people are here about the way others look. (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense) I love the weather here. I love the ocean and the mountains and the trees. I love that I live in a small town where I see at least one person I know (and like) every time I go to the store. And on the other side of the coin, I love watching my children play with their cousins back on the mother ship. I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back. I love that it costs a hell of a lot less to live on the mother ship than it does here. And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.
Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad. For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities. And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half. But will we be in this same position in 30 months after settling down there? So many questions that I suppose no one can really answer for me.
I need to do a better job at living in the present, but my head sometimes just won't allow it.
But back to the part about wanting a community...we move around a lot. It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood. A good friend often jokes that we must be a part of the witness protection program. I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992. That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space. I'm tired of not knowing where I am supposed to be. It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here. Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is. I'm sure that sounds absolutely ridiculous. It sounds ridiculous to me just typing it. I guess I am having trouble finding the right words to truly describe how I'm feeling.
Another problem is the other half. I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging. Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past) Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him. I need a village, he does not. I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult. I find myself going to things with only B. M's disability makes outings like yesterday's parade a bit more challenging. And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately. Our family is often divided as I am aware so many autism family's are. But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.
The question of where to live for the long haul haunts me daily. What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers. But that would be because it's his friend and family base...his comfort zone we'd be returning to. As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants. I love the California lifestyle. I love how easy going people are here about the way others look. (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense) I love the weather here. I love the ocean and the mountains and the trees. I love that I live in a small town where I see at least one person I know (and like) every time I go to the store. And on the other side of the coin, I love watching my children play with their cousins back on the mother ship. I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back. I love that it costs a hell of a lot less to live on the mother ship than it does here. And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.
Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad. For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities. And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half. But will we be in this same position in 30 months after settling down there? So many questions that I suppose no one can really answer for me.
I need to do a better job at living in the present, but my head sometimes just won't allow it.
Wednesday, October 13, 2010
Hiatus
A little break will do a Mama good, but damn is it hard to jump back into reality!
I was fortunate enough to finally have an entire week without hands on parenting duties. I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival. I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day. Ouch. My liver hurts! I was so, so ready to get back and see my sweet boys. I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break! (which will likely not be for a very, very long time)
Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day. Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.
I got some news from a close friend yesterday that has sent me into a bit of a tailspin. One of B's best little buddies has just been diagnosed with leukemia. I can barely type that out without getting a huge lump in my throat. This little guy isn't even four years old and he has fucking cancer. Seriously...WHY?
Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours. I feel a heaviness in my bones and have been walking around in a daze. This is just too close. Too, too close. And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.
Isn't that fine line in so many of life's situations a bitch?
No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers. Light a candle. Meditate. Do a dance. Just send some healing power to this kiddo. D is truly one of the strongest and toughest three year olds I have ever met. This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long. He has a gusto like no other and I know it will serve him well in this fight.
I was fortunate enough to finally have an entire week without hands on parenting duties. I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival. I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day. Ouch. My liver hurts! I was so, so ready to get back and see my sweet boys. I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break! (which will likely not be for a very, very long time)
Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day. Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.
I got some news from a close friend yesterday that has sent me into a bit of a tailspin. One of B's best little buddies has just been diagnosed with leukemia. I can barely type that out without getting a huge lump in my throat. This little guy isn't even four years old and he has fucking cancer. Seriously...WHY?
Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours. I feel a heaviness in my bones and have been walking around in a daze. This is just too close. Too, too close. And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.
Isn't that fine line in so many of life's situations a bitch?
No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers. Light a candle. Meditate. Do a dance. Just send some healing power to this kiddo. D is truly one of the strongest and toughest three year olds I have ever met. This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long. He has a gusto like no other and I know it will serve him well in this fight.
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