Its been a little crazy lately but that's typical for us. Our Thanksgiving went the way it usually goes. We spend the day together - Mom, Angie, John and me. Mom cooks, Angie sits as far away from John as she can, John eats, and eats, and eats and I try to mediate.
John was really good for about two-three hours but as soon as he saw food on the table that's all he wanted. So the last couple hours he was really frustrating because he kept wanting to go into the kitchen and the man is strong.
I did pick him up and take him back and he was almost perfect in the car. He loves music playing in the car. I also brought Betsy, my dog with me, on the ride back and she made some new friends in John's group home.
I'm thankful this year but still preoccupied with not having a job. Angie is feeling better after being sick for a few days. I just programmed the DVR so Mom can watch her Christmas shows.
Saturday, November 28, 2009
Sunday, November 22, 2009
November and all its cracked up to be (part II)
on a meandering path through weddings and families, reconciliations and reaffirmations, and finally an exclamation point. October 10th saw the marriage of one cousin, on my mother's side, a young woman who lost both parents in the last decade. She's in her twenties and her parents were in their fifties. I don't socialize with most of that side of the family - not quite hatfield and mccoys but the drama of daily life. But the wedding was nice and my sister clapped when she shouldn't have - it was cute. The reception meant I had to dodge and encounter the uncle I despise most but otherwise I survived and as Fr. Tim would say, I had to leave the door open so people could walk through.
Six days later, there was a wedding on the other side of family. While I normally refer to myself as their version of hellspawn, I'll clarify that my stepmother had something to do with their attitudes toward me and now that she's gone back to Indiana and my father is dead, that side of the family has reverted to small town practicality. I'm his oldest daughter, he could be a real jerk, my mother raised me and two handicapped siblings oh and his so called loving second wife pretty took him for all or what little he had. Which doesn't bother me - I don't care about that kind of money but others do, plus they shunned me because of what she told them so they are a little peeved. Like I mentioned before, the door was open, I walked through it, they walked through it and my status as hellspawn as been reduced to somewhat erratic but invited to family events. Most importantly, they let down their grudge against my mother which means I'm not caught in the middle anymore.
The final wedding of Oct/Nov was the most important. Yes, I am VERY biased. Renee is the one pictured with me, Angie and John and she's like a younger sister but more. There are people you would do anything for and she is one of the reasons I'm home - she's 'grounded me' but in a good way. Her wedding was the most fun and I talked to my cousins more that night than I had in years. Her wedding was a bridge between families since her husband knows everyone. It was an amazing night.
Finally, drained but eager to get out of dodge I headed east for one of my adventures - a sci-fi convention. I love to travel outside my comfort zone and Gareth David Lloyd from Torchwood and John deLancie from everything else was going to be there. Leonard Nimoy was in the building but he wasn't worth the $60 dollars I didn't think I had. Of course, the best laid plans...
I hooked up with three other solo con attendees who were all there for different people and we wandered about together, particularly at dinner and breakfast where we sat with the celebrities. My group sat with Corin Nemec (look him up - short version, he's tall and hot). We had a blast. He was charming, funny and extremely easy to talk to. Granted, I've been unemployed for three months, spent far too much time in hospitals, physical and psychological therapy and in really annoyingly uncomfortable interviews but given all of that, it was easily the highlight of the convention. My brain was fairly unfiltered - by nervousness, xanax or not eating enough but I laughed, joked, teased and probably embarassed myself though, I don't care. Its that feeling of freedom when for a moment in time, you're just you, with a tablefull of strangers, listening and contributing and it all feels like this amazing human connection. While I did have a glass of wine or two, I was far more intoxicated by the human interaction buzz.
The rest of the convention had its moments - a picture with Corin giving me a hug and signing it 'Cuddles are for Winners' - trite or not, its not a bad motto.
The universe is an amazing and complicated thing. It hasn't ever been easy and its not meant to be but when it gives back these little glimmers of hope. Reconciliation, freedom to speak freely, a charming man that made me feel accepted - all of that is a message. And before I signoff, be brave and go where you may not have gone before. We know the twisted life we lead as brothers, sisters, mothers, fathers, caregivers and managers of adults with developmental disabilities. We need humor to get through our day and its not always perfect humor. I find this web series refreshing - satirical, raunchy, certainly not for the faint of heart but on those darkest days when you need a laugh, check it out.
http://www.crackle.com/c/Star-ving
Six days later, there was a wedding on the other side of family. While I normally refer to myself as their version of hellspawn, I'll clarify that my stepmother had something to do with their attitudes toward me and now that she's gone back to Indiana and my father is dead, that side of the family has reverted to small town practicality. I'm his oldest daughter, he could be a real jerk, my mother raised me and two handicapped siblings oh and his so called loving second wife pretty took him for all or what little he had. Which doesn't bother me - I don't care about that kind of money but others do, plus they shunned me because of what she told them so they are a little peeved. Like I mentioned before, the door was open, I walked through it, they walked through it and my status as hellspawn as been reduced to somewhat erratic but invited to family events. Most importantly, they let down their grudge against my mother which means I'm not caught in the middle anymore.
The final wedding of Oct/Nov was the most important. Yes, I am VERY biased. Renee is the one pictured with me, Angie and John and she's like a younger sister but more. There are people you would do anything for and she is one of the reasons I'm home - she's 'grounded me' but in a good way. Her wedding was the most fun and I talked to my cousins more that night than I had in years. Her wedding was a bridge between families since her husband knows everyone. It was an amazing night.
Finally, drained but eager to get out of dodge I headed east for one of my adventures - a sci-fi convention. I love to travel outside my comfort zone and Gareth David Lloyd from Torchwood and John deLancie from everything else was going to be there. Leonard Nimoy was in the building but he wasn't worth the $60 dollars I didn't think I had. Of course, the best laid plans...
I hooked up with three other solo con attendees who were all there for different people and we wandered about together, particularly at dinner and breakfast where we sat with the celebrities. My group sat with Corin Nemec (look him up - short version, he's tall and hot). We had a blast. He was charming, funny and extremely easy to talk to. Granted, I've been unemployed for three months, spent far too much time in hospitals, physical and psychological therapy and in really annoyingly uncomfortable interviews but given all of that, it was easily the highlight of the convention. My brain was fairly unfiltered - by nervousness, xanax or not eating enough but I laughed, joked, teased and probably embarassed myself though, I don't care. Its that feeling of freedom when for a moment in time, you're just you, with a tablefull of strangers, listening and contributing and it all feels like this amazing human connection. While I did have a glass of wine or two, I was far more intoxicated by the human interaction buzz.
The rest of the convention had its moments - a picture with Corin giving me a hug and signing it 'Cuddles are for Winners' - trite or not, its not a bad motto.
The universe is an amazing and complicated thing. It hasn't ever been easy and its not meant to be but when it gives back these little glimmers of hope. Reconciliation, freedom to speak freely, a charming man that made me feel accepted - all of that is a message. And before I signoff, be brave and go where you may not have gone before. We know the twisted life we lead as brothers, sisters, mothers, fathers, caregivers and managers of adults with developmental disabilities. We need humor to get through our day and its not always perfect humor. I find this web series refreshing - satirical, raunchy, certainly not for the faint of heart but on those darkest days when you need a laugh, check it out.
http://www.crackle.com/c/Star-ving
November and all its cracked up to be
John. Oh what can I say about John. He's currently apparently not sick. Woohoo!
However, he's not 'better' either. He keeps spiking fevers and there continues to be miscommunication between doctors and nurses and caregivers - oh my! Theoretically, should he show signs of congestion again and he's in the right hospital, the pulmonologist (lung specialist) that he's supposed to see is going to rush in and save the day.
If only.
However, everyone is fairly well aware finally that hey, maybe this isn't freaking normal even if he has 'Down Syndrome'. There are days, when I really get frustrated with my brother, usually after he's pulled my hair and left claw marks on my chest but that's nothing compared to these doctors who don't respect that he is loving, living, beautiful person and treat him like an afterthought. That attitude is going to hasten his demise and while most people don't see my temper, its fairly pronounced when you threaten someone I love.
So the last ER visit turned out to be a false alarm but if protocols had been followed, the extra special wonder doctor would have been called and could at least have evaluated John. It hasn't been long enough for the pneumonia scars to heal but he could get a sort of baseline (and also understand why I stay in the hospital with him since he's difficult.) I get tired of explaining to nurse after nurse after doctor after doctor that "He's 18 months old living in a 31 year old body, if you want to poke and prod him, he'll be fine but if you try to put an O2 monitor on him or O2 in his nose/face, he'll fight."
I'm scared because this antibiotic-sick-antibiotic-sick-stronger antibiotic-sick sequence just can't go on forever. People have suggested g-tubes, thinking he's silently aspirating. Imagine a man-child who LOVES to eat, not being able to. I don't even know if they could keep a g-tube in. They can't keep a CPaP on him unles his meds have him drugged out.
And physically holding him down for treatments isn't fun for him or for those who have to do it. And the worst part is, very few people get it. Even I didn't for awhile. You lull yourself into wondering why is this all happening. He's mentally, physically and behaviorally sick - how much value does his life have?
But I grew up with him. I remember the joy, I still feel the enduring, unconditional love, I see the smile when I sing "a Bicycle built for two'. He is in there and when I mean he, I mean whatever was meant when someone said the meek shall inherit the earth. I'm as untrusting of most things written down thousands of years ago with double and triple meanings. But I see my brother, the weakest of us all, and my family is pretty messed up. He has something about him that glows. Not all the time. He drives me crazy some days. But when I reach him, for those moments, I believe in something. I remember the race we're in only matters sometimes. We all suffer in our own ways. Maybe this is John's final journey but I won't let him face it without a fight.
He is my brother, my baby brother and there are answers yet to be found.
However, he's not 'better' either. He keeps spiking fevers and there continues to be miscommunication between doctors and nurses and caregivers - oh my! Theoretically, should he show signs of congestion again and he's in the right hospital, the pulmonologist (lung specialist) that he's supposed to see is going to rush in and save the day.
If only.
However, everyone is fairly well aware finally that hey, maybe this isn't freaking normal even if he has 'Down Syndrome'. There are days, when I really get frustrated with my brother, usually after he's pulled my hair and left claw marks on my chest but that's nothing compared to these doctors who don't respect that he is loving, living, beautiful person and treat him like an afterthought. That attitude is going to hasten his demise and while most people don't see my temper, its fairly pronounced when you threaten someone I love.
So the last ER visit turned out to be a false alarm but if protocols had been followed, the extra special wonder doctor would have been called and could at least have evaluated John. It hasn't been long enough for the pneumonia scars to heal but he could get a sort of baseline (and also understand why I stay in the hospital with him since he's difficult.) I get tired of explaining to nurse after nurse after doctor after doctor that "He's 18 months old living in a 31 year old body, if you want to poke and prod him, he'll be fine but if you try to put an O2 monitor on him or O2 in his nose/face, he'll fight."
I'm scared because this antibiotic-sick-antibiotic-sick-stronger antibiotic-sick sequence just can't go on forever. People have suggested g-tubes, thinking he's silently aspirating. Imagine a man-child who LOVES to eat, not being able to. I don't even know if they could keep a g-tube in. They can't keep a CPaP on him unles his meds have him drugged out.
And physically holding him down for treatments isn't fun for him or for those who have to do it. And the worst part is, very few people get it. Even I didn't for awhile. You lull yourself into wondering why is this all happening. He's mentally, physically and behaviorally sick - how much value does his life have?
But I grew up with him. I remember the joy, I still feel the enduring, unconditional love, I see the smile when I sing "a Bicycle built for two'. He is in there and when I mean he, I mean whatever was meant when someone said the meek shall inherit the earth. I'm as untrusting of most things written down thousands of years ago with double and triple meanings. But I see my brother, the weakest of us all, and my family is pretty messed up. He has something about him that glows. Not all the time. He drives me crazy some days. But when I reach him, for those moments, I believe in something. I remember the race we're in only matters sometimes. We all suffer in our own ways. Maybe this is John's final journey but I won't let him face it without a fight.
He is my brother, my baby brother and there are answers yet to be found.
Monday, November 2, 2009
Where oh where did October go?
So many changes in the last month. I may ramble a bit but I should cover everything. First John was discharged from the hospital and I am pretty sure everyone knows how I feel about that. Short version: there are still no answers except 'he keeps getting sick and we'll keep treating him with antibiotics'. Of course the underlying issue is that at some point, the antibiotics won't work. That scares me as it would anyone facing the mortality of a loved one. But one day at a time. He has a doctor appt tomorrow. He also starts his new Day Program tomorrow. Mom and I both giggled when we saw the ad in the paper for a one-to-one person needed at his new Day Program. As I've mentioned before, John can be challenging so she/he will be in for a challenge.
In sadder news, the woman who managed John's group home was laid off. I feel this blow deeply because I feel like we've lost someone we trusted who was on John's side. This economy frankly keeps kicking us all while we're down. But on we march.
Angie has been much like her namesake this month. At both weddings she was an Angel - completely delighting everyone she met. I'm so proud of her and of my family both those who have helped integrate her and those who were open to really seeing her for the first time. It really validated my decision to bring her out of the CBRF she was in 5 years ago. Of course it hasn't been an easy journey but to see her fitting in was awesome. We have one more wedding this weekend - the 'big' one and I'll be attending to the bride who is my cousin so Mom will be Angie's chaperone.
Mom and I have both been able to visit John more since he moved and when he's not in the hospital. One of the challenges with John is wondering if he notices when we aren't there. While the hospital stays weren't fun, they helped me connect with John on a different level and that has made visiting him easier.
I've been job hunting and its been three months now. It hasn't been going all that well. I've been trying to do some soul searching as well and I've come back to the idea of being a teacher, specificially a special education teacher. I've applied to a program. There are lots of hoops to jump through and while its a recurring theme in my life (this rethinking of my career), its still a big change. Patience though and prayer/meditation.
In sadder news, the woman who managed John's group home was laid off. I feel this blow deeply because I feel like we've lost someone we trusted who was on John's side. This economy frankly keeps kicking us all while we're down. But on we march.
Angie has been much like her namesake this month. At both weddings she was an Angel - completely delighting everyone she met. I'm so proud of her and of my family both those who have helped integrate her and those who were open to really seeing her for the first time. It really validated my decision to bring her out of the CBRF she was in 5 years ago. Of course it hasn't been an easy journey but to see her fitting in was awesome. We have one more wedding this weekend - the 'big' one and I'll be attending to the bride who is my cousin so Mom will be Angie's chaperone.
Mom and I have both been able to visit John more since he moved and when he's not in the hospital. One of the challenges with John is wondering if he notices when we aren't there. While the hospital stays weren't fun, they helped me connect with John on a different level and that has made visiting him easier.
I've been job hunting and its been three months now. It hasn't been going all that well. I've been trying to do some soul searching as well and I've come back to the idea of being a teacher, specificially a special education teacher. I've applied to a program. There are lots of hoops to jump through and while its a recurring theme in my life (this rethinking of my career), its still a big change. Patience though and prayer/meditation.
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