I'm sure that there's some message from the Divine in all of this. My faith is muddled but I've lived too long with my beautiful siblings to not have a belief in a higher power.
Facing mortality is hard. I've lost my father, an uncle and an aunt. I know my siblings won't live to an old age but lately I've had my brother's mortality thrown down in front of me like a gauntlet. Maybe raging against the inevitable. But i just do not believe that the only answer to my brother getting sick is aspiration and Down Syndrome.
I know a lot of people don't see the blessing my siblings are. Sometimes I don't see it. But when the moments come, when the tiniest action of your brother holding your hand or your sister brushing your hair, they come with a beauty that is brilliant.
They aren't broken. Nothing needs to be fixed. They just are who they are and helping them achieve their potential is as much their gift to us as it is our gift to them.
I know the day will come when they will get sick. Too sick to hope for them to get better totally. But I just don't think its now. And I don't have to give up quite so easily. I'll figure something out.
In the meantime, there is something I've been thinking about: http://larcheusa.org/
Sunday, September 27, 2009
Saturday, September 26, 2009
A Family of Strangers
Let me preface this by saying I'm sitting in the hospital at 9AM and I have been here since Tuesday at 9:40/10:00am. My brother, who has been treated with a strong antibiotic because of pneumonia and a fever four times beginning in April of this year, was brought to the ER because his fever spiked to 102 and that's been our experience of the first sign he's getting sick. and since he's been really good at getting sick lately, his group home manager rightly brought him to the ER to be evaluated. They put him on a broad spectrum antibiotic and his fever went down. Then they admitted him. I was assured that 'this time' we'd figure out what was going on. Well that didn't happen.
He is being discharged today with a 14 day course of two antibiotics, one that he's had before and responded to and a new one recommended by the infectious disease doctor. His doctor came in today to follow up on what he had told me last night.
John has Down Syndrome and his body ages faster because of the translocation of the genes. John is getting pneumonia because he's aspirating. Even though I have concerns about his mouth/swallowing muscles atrophying if he eats pureed food all the time, a)i'm not a doctor and b)i'm not a speec therapist so I should just accept that they know more than me and he needs pureed food with sips of liquid basically forever. Also, while he didnt' get pneumonia this time and the culture didn't grow anything, I should accept that he has Down Syndrome and that he won't be around forever and 'this kind of thing just happens because things change with people.'
We played a few word games when I explained my sister is older and doesn't have these issues, although John is different behaviorally and he jumped on that to explain that first I was telling him they were alike but now I was telling him they were different. He also suggested that I should visit someplace like Children's hospital where they treat more patients with Down Syndrome.
In a lovely recommendation for the empathy of said doctor, he praised my 'advocacy' for John and when I blurted out 'what else do you expect me to do, not care?' he asked - well what would you do if there were no John.
I think it was at that point that I agreed to respectfully disagree and he said 'you are a smart lady and we're just talking.'
The manager of John's group home also talked to this doctor and arranged the discharge for the time we'd mentioned and she/the home have his antibiotics already. But per the doctor, John could spike a fever at any time because 'that's his life now'. What a life.
The case manager here at the hospital has been in to see me twice - once while we talked about John's experiences last time and once to give me a copy of paperwork I already had.
John's group home attendants have come up three times with clothing and to check on us so they've heard my point of view.
The nurses have all been good, particularly the ones that had John before. He is ready to go home. At 11'ish last night while I left the room to get an ice cream bar, he got out of bed, alarm and all and walked down the hallway in his diaper. I switched him to shorts, let him sit up in a chair for a half hour and then ushered him back to bed. I have fresh scrapes, bruises and scars.
I'm his sister and I love him. I get told how awesome that is but while I appreciate the compliment, seriously what other choice is there? I love him and I've spent half my life taking care of my brother and sister. But that too was thrown in my face by the doctor 'what would you do without john'? Well, as a matter of fact, I was married, I brought my sister to live with me, then I divorced and then I moved to milwaukee and then I came home because John and family needed me here and I was lonely. What options are there when you love your brother and he needs you?
The hardest thing for me is the lack of control in all of this. Medicaid caseworkers. People sitting in his group home talking to his county worker about his health. People making decisions about what kind of food he should eat. Doctors deciding his problems are just 'normal' for Down Syndrome patients. State and Federal Government who would rather pay strangers, well meaning and organized, trained strangers, more than my mother and my monthly salary combined to take care of John even though if they paid half that amount to my mom or I, we could take care of him at home and it could be a full-time job for us but life doesn't work that way. And then comments about money - what the nurses make by the same people who make 9x what mom and I made to take care of him. But its not really income the powers that be say. It was just his social security and a little bit set aside by the state. Does ANYONE wonder why families can't take care of their disabled children at home?
So we give ourselves up to being part of this Family of strangers who in many ways have more power than your own blood. Doctors and lawyers, nurses, caregivers, house managers and caseworkers. In the end, I think I end up feeling as powerless as John must feel.
But we must all get along because its the best its going to get for John.
He is being discharged today with a 14 day course of two antibiotics, one that he's had before and responded to and a new one recommended by the infectious disease doctor. His doctor came in today to follow up on what he had told me last night.
John has Down Syndrome and his body ages faster because of the translocation of the genes. John is getting pneumonia because he's aspirating. Even though I have concerns about his mouth/swallowing muscles atrophying if he eats pureed food all the time, a)i'm not a doctor and b)i'm not a speec therapist so I should just accept that they know more than me and he needs pureed food with sips of liquid basically forever. Also, while he didnt' get pneumonia this time and the culture didn't grow anything, I should accept that he has Down Syndrome and that he won't be around forever and 'this kind of thing just happens because things change with people.'
We played a few word games when I explained my sister is older and doesn't have these issues, although John is different behaviorally and he jumped on that to explain that first I was telling him they were alike but now I was telling him they were different. He also suggested that I should visit someplace like Children's hospital where they treat more patients with Down Syndrome.
In a lovely recommendation for the empathy of said doctor, he praised my 'advocacy' for John and when I blurted out 'what else do you expect me to do, not care?' he asked - well what would you do if there were no John.
I think it was at that point that I agreed to respectfully disagree and he said 'you are a smart lady and we're just talking.'
The manager of John's group home also talked to this doctor and arranged the discharge for the time we'd mentioned and she/the home have his antibiotics already. But per the doctor, John could spike a fever at any time because 'that's his life now'. What a life.
The case manager here at the hospital has been in to see me twice - once while we talked about John's experiences last time and once to give me a copy of paperwork I already had.
John's group home attendants have come up three times with clothing and to check on us so they've heard my point of view.
The nurses have all been good, particularly the ones that had John before. He is ready to go home. At 11'ish last night while I left the room to get an ice cream bar, he got out of bed, alarm and all and walked down the hallway in his diaper. I switched him to shorts, let him sit up in a chair for a half hour and then ushered him back to bed. I have fresh scrapes, bruises and scars.
I'm his sister and I love him. I get told how awesome that is but while I appreciate the compliment, seriously what other choice is there? I love him and I've spent half my life taking care of my brother and sister. But that too was thrown in my face by the doctor 'what would you do without john'? Well, as a matter of fact, I was married, I brought my sister to live with me, then I divorced and then I moved to milwaukee and then I came home because John and family needed me here and I was lonely. What options are there when you love your brother and he needs you?
The hardest thing for me is the lack of control in all of this. Medicaid caseworkers. People sitting in his group home talking to his county worker about his health. People making decisions about what kind of food he should eat. Doctors deciding his problems are just 'normal' for Down Syndrome patients. State and Federal Government who would rather pay strangers, well meaning and organized, trained strangers, more than my mother and my monthly salary combined to take care of John even though if they paid half that amount to my mom or I, we could take care of him at home and it could be a full-time job for us but life doesn't work that way. And then comments about money - what the nurses make by the same people who make 9x what mom and I made to take care of him. But its not really income the powers that be say. It was just his social security and a little bit set aside by the state. Does ANYONE wonder why families can't take care of their disabled children at home?
So we give ourselves up to being part of this Family of strangers who in many ways have more power than your own blood. Doctors and lawyers, nurses, caregivers, house managers and caseworkers. In the end, I think I end up feeling as powerless as John must feel.
But we must all get along because its the best its going to get for John.
Wednesday, September 2, 2009
Hollie's book
My family has had a complicated life.
I have had a complicated life.
The challenges of a dairy farm, broken marriages (mom's and mine) and extended family misunderstandings were barriers that we've had to deal with. Overcoming wasn't and couldn't be the goal because family is blood and you always have them. Only time gives us perspective on the past.
I'm writing a book and at first I was trying to write just my story but I honestly cannot talk about myself without talking about Angie and John. We are bonded together. A bond of little gestures, challenging moments, goofy outbursts, tears of frustration and joy of reunion.
I've been feeding my brother for as long as I can remember. We used to run around the house while he chased me. I held him when he had his anger seizures. My sister has been my anchor - she's learned how to help me by putting dishes in the sink, laundry in the basket and now even getting soda from the refrigerator. She plays with my hair and dances with goofy abandon.
When I was 17, I was starting my senior year in college. All of my life had wound around family, caring for my siblings and the responsibilities of the farm. When my dad's heart attack coincided with giving over the farm to other members of the family, mom looked at the big picture and chose a place for Angie and John to go. I have no doubt it was the best place for them.
St. Coletta's was run by an order of sisters that I'll have to look up again but they are unofficially known as the Lake Franciscans from Milwaukee. Its in Jefferson Wisconsin and its three hours away. Rosemary Kennedy was there though in a separate house. It was a school setting like dorm rooms. John and Angie had had six week 'camping' trips there for a year or two until the year they went there full time.
I have said many times that because John requires more care, due to division of labor, Mommy took primary care of John and Angie was mine. But I still played with my little brother. He'd chase me around the house. He'd giggle at the silliest things. He'd love to watch football. He'd roll balls around. My sister - well how do you explain feeling 'complete' when you just sit in the same room with someone?
It was the best thing for our family. I had to strike out on my own, have a life, figure out who I was - not just an older sister, the oldest daughter but everything else. What kind of music would I like. What kind of job would I have. Who would be my first real friends. College was waiting. Life was waiting for me and my mom and my brother and sister all made that sacrifice to give me a chance at living my life as Hollie - not just Hollie, Angie and John.
So I had my life - I got drunk, I wrote blogs, I dated, I figured out it took me 10 years to finish college and six years to go from married to divorced. I met new friends and made new enemies. I started to really grow up. Now I'm home again and living with one sibling and spending time with the other because he's in a group home close to where I live. This is not what I expected when I left home. But I wasn't the only one of us who changed and grew.
St. Colettas was a wonderful school; my sister even had first communion. But my sibs were 14 and 15 when they moved out. We were all split up - Mom and Dad stayed in Wisconsin until Dad got a job in Nebraska. I was in Seattle, North Carolina and then DC. Angie was at Colettas for several years until she aged out of the program and moved home into a CBRF. John also aged out and went to a different kind of institution.
Their journeys were different. We touched base every few months and the small changes became big changes. But our journeys have come around to a new height.
My sister now makes her bed better than I do but when she plays with my hair, all my stresses melt. My brother struggles with behavioral issues and when he's not pinching me, I tickle him and his giggle gives me tingles in my heart.
My sister now livess with my mom and I. My brother lived with us after his first bout with pneumonia until he moved out into a group home.
There are so many stories there. Who were they when they were younger? How have they changed? Why? What happened to them when they were away from home? What happened to me? Yet we spent every thanksgiving, christmas and Easter together. Each reunion was bittersweet - it was rare that we were all together and until 2004, good byes meant taking everyone home to different places.
There's more and I'll stop rambling now but that's our story. Complicated. Crazy. Compassionate. Challenging.
But its my life and even as I sit in the hospital with my brother, a few bruises on my arm because he had a bad day yesterday, I feel loved, tired and special. I miss my sister - I wish she was here to tussle my hair and dance with me and John. I'm not married, I don't have a job right now and I'm still happier than I've ever been because my brother and sister are an integral part of my life.
I have had a complicated life.
The challenges of a dairy farm, broken marriages (mom's and mine) and extended family misunderstandings were barriers that we've had to deal with. Overcoming wasn't and couldn't be the goal because family is blood and you always have them. Only time gives us perspective on the past.
I'm writing a book and at first I was trying to write just my story but I honestly cannot talk about myself without talking about Angie and John. We are bonded together. A bond of little gestures, challenging moments, goofy outbursts, tears of frustration and joy of reunion.
I've been feeding my brother for as long as I can remember. We used to run around the house while he chased me. I held him when he had his anger seizures. My sister has been my anchor - she's learned how to help me by putting dishes in the sink, laundry in the basket and now even getting soda from the refrigerator. She plays with my hair and dances with goofy abandon.
When I was 17, I was starting my senior year in college. All of my life had wound around family, caring for my siblings and the responsibilities of the farm. When my dad's heart attack coincided with giving over the farm to other members of the family, mom looked at the big picture and chose a place for Angie and John to go. I have no doubt it was the best place for them.
St. Coletta's was run by an order of sisters that I'll have to look up again but they are unofficially known as the Lake Franciscans from Milwaukee. Its in Jefferson Wisconsin and its three hours away. Rosemary Kennedy was there though in a separate house. It was a school setting like dorm rooms. John and Angie had had six week 'camping' trips there for a year or two until the year they went there full time.
I have said many times that because John requires more care, due to division of labor, Mommy took primary care of John and Angie was mine. But I still played with my little brother. He'd chase me around the house. He'd giggle at the silliest things. He'd love to watch football. He'd roll balls around. My sister - well how do you explain feeling 'complete' when you just sit in the same room with someone?
It was the best thing for our family. I had to strike out on my own, have a life, figure out who I was - not just an older sister, the oldest daughter but everything else. What kind of music would I like. What kind of job would I have. Who would be my first real friends. College was waiting. Life was waiting for me and my mom and my brother and sister all made that sacrifice to give me a chance at living my life as Hollie - not just Hollie, Angie and John.
So I had my life - I got drunk, I wrote blogs, I dated, I figured out it took me 10 years to finish college and six years to go from married to divorced. I met new friends and made new enemies. I started to really grow up. Now I'm home again and living with one sibling and spending time with the other because he's in a group home close to where I live. This is not what I expected when I left home. But I wasn't the only one of us who changed and grew.
St. Colettas was a wonderful school; my sister even had first communion. But my sibs were 14 and 15 when they moved out. We were all split up - Mom and Dad stayed in Wisconsin until Dad got a job in Nebraska. I was in Seattle, North Carolina and then DC. Angie was at Colettas for several years until she aged out of the program and moved home into a CBRF. John also aged out and went to a different kind of institution.
Their journeys were different. We touched base every few months and the small changes became big changes. But our journeys have come around to a new height.
My sister now makes her bed better than I do but when she plays with my hair, all my stresses melt. My brother struggles with behavioral issues and when he's not pinching me, I tickle him and his giggle gives me tingles in my heart.
My sister now livess with my mom and I. My brother lived with us after his first bout with pneumonia until he moved out into a group home.
There are so many stories there. Who were they when they were younger? How have they changed? Why? What happened to them when they were away from home? What happened to me? Yet we spent every thanksgiving, christmas and Easter together. Each reunion was bittersweet - it was rare that we were all together and until 2004, good byes meant taking everyone home to different places.
There's more and I'll stop rambling now but that's our story. Complicated. Crazy. Compassionate. Challenging.
But its my life and even as I sit in the hospital with my brother, a few bruises on my arm because he had a bad day yesterday, I feel loved, tired and special. I miss my sister - I wish she was here to tussle my hair and dance with me and John. I'm not married, I don't have a job right now and I'm still happier than I've ever been because my brother and sister are an integral part of my life.
Subscribe to:
Comments (Atom)
