To anyone but my friends, for whom this blog was intended, please go elsewhere. I never knew everyone all over the globe would be tearing this blog apart. This is just our story - it is not more important than anyone else's story, it is the only one I have to tell. And I think Julia wants me to tell it. (Stolen, yes, from a friend - you know who you are).
Thank you to my friends....... and to those who judge me and what I have written - why don't you stop wasting your time....do yourself a favor and don't read it..... I am busy trying to heal my daughter and support my family.
Thanks
Julia's Mommy.
Tuesday, May 24, 2011
Wednesday, May 4, 2011
I was asked by an autism researcher to write a narrative from Julia's perspective...
Hello, my name is Julia. I am unable to speak, but my mom has got me pretty well figured out, so she is going to tell you all the story of my life from what she believes is my perspective of my life with a significant disability. I have a severe brain injury.
I was born a normal, happy, healthy baby on December 28, 2005. What a wonderful Christmas gift I was to my family - my mom, Susan, my dad, Mark, and my big brother (well, he was 2 1/2 years old), Jack. I was big and beautiful and full of personality. Everyone that met me LOVED me! I was blessed with just over a year of what most would call a "normal life".
On December 26th, 2006, my mom scheduled me for my one year wellness exam with my pediatrician. I didn't like to go to the doctor, because it seemed I always got shots when I went there, but mommy tried to explain to me that it was for my own good and though they hurt, they would keep me healthy. That day in December, I got two shots which contained a combination of 5 different live viruses poked into my left shoulder. It really hurt, but I was a trooper, because, as mommy said, the shots would keep me safe and healthy. Mommy was wrong.
On January 4th 2007, I was sent home from daycare because I had a really bad headache and a pretty high fever. My dad picked me up from daycare because my mom was working until 8pm that night. My dad fed me, bathed me, and put me to bed early - assuming I had a bad cold or something. Dad was wrong, too. Mommy never saw me "normal" again because I was in bed when she got home from work.
On January 5th, 2007, at 7am, my dad found me in my crib unconscious, in a full blown seizure, covered in poop and vomit. My mom and dad thought I was very close to dying. Long story short, I flew in a helicopter to a hospital and I spent a month in PICU. I was on a ventilator, had feeding tubes, catheters, etc. They did lots and lots of tests on me. I am glad I was unconscious for most of the tests, because mommy said they probably hurt. The doctors weren't sure what had happened, but mommy knew - she is smart - she is an animal doctor and had seen similar things happen in animals after vaccines. Mommy pursued her thoughts on why I got so sick, and she eventually won in court for damages done to me by the MMR vaccine. Thank you, mommy.
So, about my life since January 5th, 2007. When I left the hospital, I was so confused. I couldn't walk anymore. The left side of my body didn't work. I couldn't roll over or even sit up anymore. I couldn't sleep at night because I was uncomfortable and couldn't move my body to get comfortable. Before my injury, I LOVED to eat EVERYTHING, but now my food had to be modified or it would go into my lungs when I swallowed. I had to take all kinds of yucky medicine to keep my brain from having seizures. I had so many more doctor appointments than I had ever had before! My mommy and daddy cried a lot. My mommy and daddy screamed at each other a lot. I cried a lot because my voice wouldn't make words anymore - the only noise I could make was screaming and crying. I didn't get to go back to daycare to see my friends anymore because of my disabilities and fragilities. People stopped coming to our house because they didn't know what to think of me and they didn't know how to help my mommy and daddy.
As the years went by, I did get somewhat better. I started to be able to sit up. Two years after the injury, I started walking again - not normally, and I can't run, but I became MOBILE again! Praise God! I regained my ability to swallow and went back to eating like a horse! My mommy and daddy decided not to live together anymore because of all the screaming that they did to each other. I miss my daddy - he moved far away, but I get to see him sometimes. I have a "bonus" dad now, too, named Shawn. Mommy calls him my step-dad. I really love him a lot - he and I have really connected in an amazing way.
There are still things I can't do. My ABA therapist told mommy and Shawn that I have no concept of "play". I don't play with toys like most other five year old's do. I don't really have any friends because people don't understand me and why I do the things I do. They think I am weird. I still don't understand that whole "potty" thing and I wear diapers - people think that is weird, too, since I am 5 1/2 years old. I still can't talk - but I am working on some very good noises and I am trying so hard! I still scream and cry a lot because I get so frustrated not being able to tell people what I am thinking, or if something hurts, or if I am tired. When we go out to different places, sometimes adults and kids stare at me when I am screaming and they think I am a bad kid. I am not, I just can't tell anyone what is going on in my head. I have so much to say, but no way to really say it.
I have a hard time concentrating on any one task for more than a few seconds, so I am constantly on the go looking at different things and sometimes getting into things that can hurt me. When we go out, I will walk around and eat off of strangers' plates - I LOVE food, but people think I am a bad kid and my mom is a bad mom. They are wrong. Sometimes I wander away if nobody is watching me constantly....I just want to go on an adventure, but mommy always says something about how I could get hurt or lost - I don't understand what she means. Luckily, I have never gone too far, except that time the neighbor found me in the middle of the street and brought me home...mommy was helping my brother Jack with something upstairs, and I opened the front door and walked out. It was a nice day outside and I wanted to explore!
Mommy is still very sad about what happened to me. But, I don't blame my mommy for what happened. I am frustrated living in this body of mine that doesn't work the way I want it to, but, I do the best I can. I am happy most of the time. I am developing quite a personality, and have found ways to make my needs known to those who spend the most time with me. I am trying so hard to make some words, and I think someday my mouth will be able to do what I want it to do, so I can talk. I may never hold a conversation, but I really want to be able to let people know what I am thinking. I am very smart. I want to be able to control some of my behaviors so that I can make a friend or two or fifty! I also want to be able to control my behaviors so mommy isn't so sad and mad when people judge her because of what I do. I want my mommy to be happy, and I want her to know that I love her even though she thinks what happened to me was all her fault. I want mommy to forgive herself and love me for who I am now. I will get mommy there someday! And, I am going to surprise everyone with what I will do! Look out world, here I come!
Julia
I was born a normal, happy, healthy baby on December 28, 2005. What a wonderful Christmas gift I was to my family - my mom, Susan, my dad, Mark, and my big brother (well, he was 2 1/2 years old), Jack. I was big and beautiful and full of personality. Everyone that met me LOVED me! I was blessed with just over a year of what most would call a "normal life".
On December 26th, 2006, my mom scheduled me for my one year wellness exam with my pediatrician. I didn't like to go to the doctor, because it seemed I always got shots when I went there, but mommy tried to explain to me that it was for my own good and though they hurt, they would keep me healthy. That day in December, I got two shots which contained a combination of 5 different live viruses poked into my left shoulder. It really hurt, but I was a trooper, because, as mommy said, the shots would keep me safe and healthy. Mommy was wrong.
On January 4th 2007, I was sent home from daycare because I had a really bad headache and a pretty high fever. My dad picked me up from daycare because my mom was working until 8pm that night. My dad fed me, bathed me, and put me to bed early - assuming I had a bad cold or something. Dad was wrong, too. Mommy never saw me "normal" again because I was in bed when she got home from work.
On January 5th, 2007, at 7am, my dad found me in my crib unconscious, in a full blown seizure, covered in poop and vomit. My mom and dad thought I was very close to dying. Long story short, I flew in a helicopter to a hospital and I spent a month in PICU. I was on a ventilator, had feeding tubes, catheters, etc. They did lots and lots of tests on me. I am glad I was unconscious for most of the tests, because mommy said they probably hurt. The doctors weren't sure what had happened, but mommy knew - she is smart - she is an animal doctor and had seen similar things happen in animals after vaccines. Mommy pursued her thoughts on why I got so sick, and she eventually won in court for damages done to me by the MMR vaccine. Thank you, mommy.
So, about my life since January 5th, 2007. When I left the hospital, I was so confused. I couldn't walk anymore. The left side of my body didn't work. I couldn't roll over or even sit up anymore. I couldn't sleep at night because I was uncomfortable and couldn't move my body to get comfortable. Before my injury, I LOVED to eat EVERYTHING, but now my food had to be modified or it would go into my lungs when I swallowed. I had to take all kinds of yucky medicine to keep my brain from having seizures. I had so many more doctor appointments than I had ever had before! My mommy and daddy cried a lot. My mommy and daddy screamed at each other a lot. I cried a lot because my voice wouldn't make words anymore - the only noise I could make was screaming and crying. I didn't get to go back to daycare to see my friends anymore because of my disabilities and fragilities. People stopped coming to our house because they didn't know what to think of me and they didn't know how to help my mommy and daddy.
As the years went by, I did get somewhat better. I started to be able to sit up. Two years after the injury, I started walking again - not normally, and I can't run, but I became MOBILE again! Praise God! I regained my ability to swallow and went back to eating like a horse! My mommy and daddy decided not to live together anymore because of all the screaming that they did to each other. I miss my daddy - he moved far away, but I get to see him sometimes. I have a "bonus" dad now, too, named Shawn. Mommy calls him my step-dad. I really love him a lot - he and I have really connected in an amazing way.
There are still things I can't do. My ABA therapist told mommy and Shawn that I have no concept of "play". I don't play with toys like most other five year old's do. I don't really have any friends because people don't understand me and why I do the things I do. They think I am weird. I still don't understand that whole "potty" thing and I wear diapers - people think that is weird, too, since I am 5 1/2 years old. I still can't talk - but I am working on some very good noises and I am trying so hard! I still scream and cry a lot because I get so frustrated not being able to tell people what I am thinking, or if something hurts, or if I am tired. When we go out to different places, sometimes adults and kids stare at me when I am screaming and they think I am a bad kid. I am not, I just can't tell anyone what is going on in my head. I have so much to say, but no way to really say it.
I have a hard time concentrating on any one task for more than a few seconds, so I am constantly on the go looking at different things and sometimes getting into things that can hurt me. When we go out, I will walk around and eat off of strangers' plates - I LOVE food, but people think I am a bad kid and my mom is a bad mom. They are wrong. Sometimes I wander away if nobody is watching me constantly....I just want to go on an adventure, but mommy always says something about how I could get hurt or lost - I don't understand what she means. Luckily, I have never gone too far, except that time the neighbor found me in the middle of the street and brought me home...mommy was helping my brother Jack with something upstairs, and I opened the front door and walked out. It was a nice day outside and I wanted to explore!
Mommy is still very sad about what happened to me. But, I don't blame my mommy for what happened. I am frustrated living in this body of mine that doesn't work the way I want it to, but, I do the best I can. I am happy most of the time. I am developing quite a personality, and have found ways to make my needs known to those who spend the most time with me. I am trying so hard to make some words, and I think someday my mouth will be able to do what I want it to do, so I can talk. I may never hold a conversation, but I really want to be able to let people know what I am thinking. I am very smart. I want to be able to control some of my behaviors so that I can make a friend or two or fifty! I also want to be able to control my behaviors so mommy isn't so sad and mad when people judge her because of what I do. I want my mommy to be happy, and I want her to know that I love her even though she thinks what happened to me was all her fault. I want mommy to forgive herself and love me for who I am now. I will get mommy there someday! And, I am going to surprise everyone with what I will do! Look out world, here I come!
Julia
Wednesday, April 20, 2011
What a day!
So, today was my first "day off" of work in almost six days....not counting last week when we realized we had no caregiver anymore due to personal reason......So, starting last monday, it was me and shawn....and I was scheduled with Dr Larry last Monday, and overtime with my job in Ft Lupton - Thursday, Friday, Saturday, Monday, Tuesday, etc.....BUT, we held it together and made it through, though yesterday was not the greatest job performance for me....had to leave "on time" and not stay late, and got all but four of my over load of surgies done....had to come home for two reasons - sleep deprivation due to stress, and an interview for a caregiver.
The caregiver seemed very sweet and had MUCH experience with brain injured children....it is her passion and she hopes to open a clinic someday for pediatric brain injured kids.....I hope she will decide to work for us. We have learned some things about drawing the line between friends and caregivers - very hard lesson - very painful lesson - as I do care very much for Julia's former caregiver.....
Today, the ABA therapist came out....she is coming tomorrow and friday, and then wants to start may 9th - FIVE DAYS A WEEK! WOW, more than what I was expecting, but I think it will be worth it....the therapist seems very knowledgable and is excited to work with Julia. YAY!
During all of the ABA chaos, we also had a child proofer here at the house and the house is like Fort Knox.....the adults can't even figure it all out! Haha! My mom suggested asking Julia to open everything for us...she is good at child proof things!
Also during all of this (child proofer here, ABA therapist here, etc), Dr Larry stopped by to drop off my "new" Dr bag to start working with Caring Pathways! YAY! I'm on Friday and Monday...and then one to two monday's a month until things pick up! YAY! So excited to start doing some of this work!!! I hope things pick up with his business so I can do more!
Julia has been ROCKING with her Ipad!!!! She is showing great strides!
BUSY day, but very good day!
Susan and Julia
The caregiver seemed very sweet and had MUCH experience with brain injured children....it is her passion and she hopes to open a clinic someday for pediatric brain injured kids.....I hope she will decide to work for us. We have learned some things about drawing the line between friends and caregivers - very hard lesson - very painful lesson - as I do care very much for Julia's former caregiver.....
Today, the ABA therapist came out....she is coming tomorrow and friday, and then wants to start may 9th - FIVE DAYS A WEEK! WOW, more than what I was expecting, but I think it will be worth it....the therapist seems very knowledgable and is excited to work with Julia. YAY!
During all of the ABA chaos, we also had a child proofer here at the house and the house is like Fort Knox.....the adults can't even figure it all out! Haha! My mom suggested asking Julia to open everything for us...she is good at child proof things!
Also during all of this (child proofer here, ABA therapist here, etc), Dr Larry stopped by to drop off my "new" Dr bag to start working with Caring Pathways! YAY! I'm on Friday and Monday...and then one to two monday's a month until things pick up! YAY! So excited to start doing some of this work!!! I hope things pick up with his business so I can do more!
Julia has been ROCKING with her Ipad!!!! She is showing great strides!
BUSY day, but very good day!
Susan and Julia
Monday, March 21, 2011
Monday, March 14, 2011
Will it ever end................................................
So, Julia has been crying a lot for the last few days. Finally tonight I was at my wits end (along with her caregiver), and took her to the Dr. Yes, mother of the year, she has a severe double ear infection......................Dr recommended seeing an ENT dr..........since she can't blow her nose and constantly has her hands in her mouth, she is always sick. He recommended "another" MRI to check her sinuses and may need some surgical work on them, along with tubes in her ears...............oh, the joys.
I am so tired of not knowing if she is crying and screaming because she is who she is, or because she is sick. I feel so bad for not taking her in sooner........well, live and learn I guess.
Susan and Julia
I am so tired of not knowing if she is crying and screaming because she is who she is, or because she is sick. I feel so bad for not taking her in sooner........well, live and learn I guess.
Susan and Julia
Friday, February 25, 2011
IT IS DONE! Well, almost!
Conservator hearing was done today! Julia should be all set within the next few weeks! I am very happy the Vaccine Injury Compensation Program worked for my daughter, and I am hoping it will not fail the many of you out there that need the help! I will do what I can to help you all out when I can!
Susan
Susan
Sunday, January 16, 2011
Then and Now
As I layed awake most of the night last night, throwing myself a pity party, dissappointed in myself, my life, my choices, etc....I started going back to that place of "what if's".....I tried to think of it objectively and I came up with lists of the differences between life before Julia's injury and after....and tried to decide which was better - not that it really matters now, because it is what it is.....but, I just wanted to write it out. Maybe then I can decide for myself the goodness that has come out of her injury, regardless of the stressors of this life.
BEFORE - normal baby girl......had she continued on this path, here are the things I think about.....
Julia is five now. Had this injury not happened, she would be riding her bike, she would have friends and playdates, we could go places, like the movies, without any ordeal. We could find regular teenaged babysitters and I wouldn't have to worry everytime I went out about the possibility of another life threatening seizure. She would be involved in school activities. She would talk and say the same sorts of funny things that Jack does. We could go get our nails done together. I could put her hair up and she would like it. She wouldn't be so frustrated with herself and us for things she cannot express. She would be done with the terrible two's. I would still be working in typical veterinary medicine, making good money, and being able to get the kids everything they wanted/needed. I would not have the financial disaster that I have right now. I may have been able to salvage the marriage to their father and not have the stigma of being divorced twice. My father would not have disowned me. Shawn's sister wouldn't have disowned him and removed Shawn from his niece's life. I wouldn't have lost the beautiful house we lived in in florida. I wouldn't have lost so many of the friends and family that just don't call anymore due to our circumstances. I wouldn't have my weeks filled with rehab appointments for julia, and dr appointments for julia. Julia would not be on medication for seizures which can have long term complications. I would have more free time. I wouldn't have an "aura" of chronic sadness following me around all the time which is difficult for everyone. Julia would be happy, thriving, and normal. Sure, it wouldn't be perfect, nothing ever is, but, it would be "typical" stuff, not overwhelmingly stressful stuff that affects every aspect of our lives.
AFTER - severe brain injury due to MMR vaccine at one year of age...
Julia IS happy most of the time. At this point, I don't think she realizes she is that different from other kids. Julia is beautiful and alive and touches so many different people's lives. Julia loves us and everyone. Julia is a trooper with her dr appointments and rehab appointments and WILL get better - to what degree nobody knows. Julia is SMART. Though I have lost many friends and my father, I have made SO many other friends that matter more to me than anything - I will list some here - sorry if I forget anyone - Shawn, Bernie, Jess, Susie and clan, Kayanna, Pam, Anna, Kory, the whole "sprucewood" clan, Juliette, Lisa (bless your heart), all of Julia's teachers and the school director, Mark, my mom and roger of course, Leticia, Wendy, Sydney, Colton, Stacey, all of Shawn's friends who have stepped up, Dawn, all my fellow mom's of brain injured kids that are facebook friends, Katie, Jeff, and I am sure there are so many more I have left out - NOT intentional - just having a brain freeze. I have educated myself on vaccination in people and animals, and I now KNOW better and can see the corruption and the herd health mentality. Due to this education, I moved away from typical vet practice, and have met so many people who do strive to really help animals and their people. Most notably Larry - thank you for entering my life - your compassion is unbelievable, and I hope to accept my loss as well as you have with your son one day. I am working, for much less money, but for what I feel is a better cause. Spay and Neuter - boring, maybe - but when you walk the halls of these shelters, and see all the dogs and cats that will not be adopted, the reality of the loss of healthy life really hits you - so I am doing what I can in my small little portion of the world to try to help these animals. I have met MANY new people at these jobs, who I believe will become friends soon, who share the same passion. I have become a more compassionate person trying to help those in need to the best of my ability. If not for this injury, I would have NEVER learned so much about the legal system and FIGHTING for what is RIGHT and ADVOCATING for my daughter and her needs. Most typical parents do advocate, but multiply this by a billion - I have learned to do this and take pride in it. I have educated MANY people through talking to them about vaccines and through Julia's blog. Even my new boss is listening to me and agrees! How good does that feel! I have a roof over my head (a NICE roof), and I am able to take care of the basic needs of my family, along with Julia's special needs school which has brought her so far! I have help, support, and understanding from many.
So, though there are many unkowns about the future, and many thing I miss about "before injury", I would have to say that "after injury" isn't all that bad. It has changed the course of many lives, but I think in many ways for the better.....so, I pick "after". Not that I would ever WISH this injury on ANYONE, especially a child, it is not a death sentence. It is what it is, and, though very stressfull at times, watching your child, who you love more than anyone or anything struggle at life, it will all be OK. I am grateful for all I have learned. AND, I will keep Julia going and happy.
Thanks for listening.
Susan
BEFORE - normal baby girl......had she continued on this path, here are the things I think about.....
Julia is five now. Had this injury not happened, she would be riding her bike, she would have friends and playdates, we could go places, like the movies, without any ordeal. We could find regular teenaged babysitters and I wouldn't have to worry everytime I went out about the possibility of another life threatening seizure. She would be involved in school activities. She would talk and say the same sorts of funny things that Jack does. We could go get our nails done together. I could put her hair up and she would like it. She wouldn't be so frustrated with herself and us for things she cannot express. She would be done with the terrible two's. I would still be working in typical veterinary medicine, making good money, and being able to get the kids everything they wanted/needed. I would not have the financial disaster that I have right now. I may have been able to salvage the marriage to their father and not have the stigma of being divorced twice. My father would not have disowned me. Shawn's sister wouldn't have disowned him and removed Shawn from his niece's life. I wouldn't have lost the beautiful house we lived in in florida. I wouldn't have lost so many of the friends and family that just don't call anymore due to our circumstances. I wouldn't have my weeks filled with rehab appointments for julia, and dr appointments for julia. Julia would not be on medication for seizures which can have long term complications. I would have more free time. I wouldn't have an "aura" of chronic sadness following me around all the time which is difficult for everyone. Julia would be happy, thriving, and normal. Sure, it wouldn't be perfect, nothing ever is, but, it would be "typical" stuff, not overwhelmingly stressful stuff that affects every aspect of our lives.
AFTER - severe brain injury due to MMR vaccine at one year of age...
Julia IS happy most of the time. At this point, I don't think she realizes she is that different from other kids. Julia is beautiful and alive and touches so many different people's lives. Julia loves us and everyone. Julia is a trooper with her dr appointments and rehab appointments and WILL get better - to what degree nobody knows. Julia is SMART. Though I have lost many friends and my father, I have made SO many other friends that matter more to me than anything - I will list some here - sorry if I forget anyone - Shawn, Bernie, Jess, Susie and clan, Kayanna, Pam, Anna, Kory, the whole "sprucewood" clan, Juliette, Lisa (bless your heart), all of Julia's teachers and the school director, Mark, my mom and roger of course, Leticia, Wendy, Sydney, Colton, Stacey, all of Shawn's friends who have stepped up, Dawn, all my fellow mom's of brain injured kids that are facebook friends, Katie, Jeff, and I am sure there are so many more I have left out - NOT intentional - just having a brain freeze. I have educated myself on vaccination in people and animals, and I now KNOW better and can see the corruption and the herd health mentality. Due to this education, I moved away from typical vet practice, and have met so many people who do strive to really help animals and their people. Most notably Larry - thank you for entering my life - your compassion is unbelievable, and I hope to accept my loss as well as you have with your son one day. I am working, for much less money, but for what I feel is a better cause. Spay and Neuter - boring, maybe - but when you walk the halls of these shelters, and see all the dogs and cats that will not be adopted, the reality of the loss of healthy life really hits you - so I am doing what I can in my small little portion of the world to try to help these animals. I have met MANY new people at these jobs, who I believe will become friends soon, who share the same passion. I have become a more compassionate person trying to help those in need to the best of my ability. If not for this injury, I would have NEVER learned so much about the legal system and FIGHTING for what is RIGHT and ADVOCATING for my daughter and her needs. Most typical parents do advocate, but multiply this by a billion - I have learned to do this and take pride in it. I have educated MANY people through talking to them about vaccines and through Julia's blog. Even my new boss is listening to me and agrees! How good does that feel! I have a roof over my head (a NICE roof), and I am able to take care of the basic needs of my family, along with Julia's special needs school which has brought her so far! I have help, support, and understanding from many.
So, though there are many unkowns about the future, and many thing I miss about "before injury", I would have to say that "after injury" isn't all that bad. It has changed the course of many lives, but I think in many ways for the better.....so, I pick "after". Not that I would ever WISH this injury on ANYONE, especially a child, it is not a death sentence. It is what it is, and, though very stressfull at times, watching your child, who you love more than anyone or anything struggle at life, it will all be OK. I am grateful for all I have learned. AND, I will keep Julia going and happy.
Thanks for listening.
Susan
Wednesday, January 5, 2011
Four years ago today - life changes....
To read the whole story, see posts from December and January of last year..not going to rehash it tonight.
I spent most of the day in bed, after, FINALLY, being able to go into Julia's room this morning, with Shawn, to get her up. I haven't done this since the injury four years ago when Julia's father found her in her crib. The following year, I couldn't get her up, and thankfully Mark got her. Last year I had Shawn get her. And this year, I was able to go with him to get her. Her head popped up like a little gopher, and I felt better. I picked out her favorite dress for her to wear today to school. She looked like a princess!
Jack had a dental appointment today - 7 to 8 cavities. Nice. He brushes everynight, but, I will admit, I had not taken him to the dentist in quite some time, as Julia's appointments and my previous full time work schedule, really did not allow much time - and he never complained. But when I took my "break" from veterinary medicine, I scheduled lots of Dr appts.....Julia never got her four year check up - I guess since she is at the Dr weekly, I forgot, or figured if something was wrong they would have caught it.....and Jack, well, the dentist just wasn't on my mind. Well, Julia had her five year check up yesterday - the Dr was very impressed with her progress - all things considered...and today, Jack went to the dentist and was a trooper. He actually LIKED it! Little does he know what is in store for the next two appointments - lots of cavities to fill....but the Doc said he would give him some gas before the shots to numb his gums to do the cavities...so hopefully that will go OK. Next Tuesday - 8am.
Shawn wrote a wonderful letter today ("from Julia") that brought things into perspective for me. Not that I haven't felt or thought these things before, but it was very heartwarming for everyone who read it....I will post it here...
Dear Mommy,
I know today is a really hard day for you and it brings back a lot of bad memories. But I wanted to tell you some things that I hope will make you feel better and a little happier.
You feel like you lost me on that sad day four years ago. But you need to know that you really didn’t. The little girl you knew before that scary time is still here, and so is the little girl you know now; we are the same person! And I am a lot like you and that makes me really happy.
I do remember those first few months and couple of years after it happened. It was really scary for me and I could tell it was for you, too. Although I screamed a lot and was really hard to handle, it wasn’t because I didn’t love you. It was because I couldn’t tell you.
And I still can’t. I can’t tell you that I know how hard you’ve been fighting for me and to make me better and how much you have cried and how you almost gave up. I am so glad you didn’t! You have taught me more about being strong and fighting and love than you may ever know. I am also really happy that you have been helping so many people that had something bad happen to them.
I have really been trying to be closer to you and hang out with you more, and I know that you have been trying, too. It makes me really happy when we play together. Please keep trying and not looking at me as someone other than your little girl! The things you thought I would be doing or should be doing don’t matter so much. What matters is that we all have this amazing family; that I am getting better at who I am; and especially that I’m doing things no one said I could do. In a weird way, maybe that’s cooler than being able to brush my teeth or paint my nails right now. I have a lot of other things I am working on! And I couldn’t be doing all of these things without what you did for me. You need to know that I really am very happy!
I don’t really get it either, but somehow I do know that this is the way it is supposed to be. The other night I had a dream where an angel came to talk to me and she said not to worry, that it was all going to be alright, and that this was my path and your path and that no matter what we have each other and that He is watching us. I guess she meant the man in the white robe with all the pretty lights around him that was standing by her. It made me feel really good and that it really is going to be okay.
I said earlier that I can’t tell you what I am thinking, but I know now that I do have a voice. It is because of you, through you, and with you that I do. And we are going to keep doing amazing things, you and me, and everyone will hear us.
Because I am your little girl and you are my Mommy.
I love you,
Julia
Enough said....thanks everyone who still hangs in there to support us. We will all be fine! Today is just another day.
Susan, Julia, Jack, and Shawn
I spent most of the day in bed, after, FINALLY, being able to go into Julia's room this morning, with Shawn, to get her up. I haven't done this since the injury four years ago when Julia's father found her in her crib. The following year, I couldn't get her up, and thankfully Mark got her. Last year I had Shawn get her. And this year, I was able to go with him to get her. Her head popped up like a little gopher, and I felt better. I picked out her favorite dress for her to wear today to school. She looked like a princess!
Jack had a dental appointment today - 7 to 8 cavities. Nice. He brushes everynight, but, I will admit, I had not taken him to the dentist in quite some time, as Julia's appointments and my previous full time work schedule, really did not allow much time - and he never complained. But when I took my "break" from veterinary medicine, I scheduled lots of Dr appts.....Julia never got her four year check up - I guess since she is at the Dr weekly, I forgot, or figured if something was wrong they would have caught it.....and Jack, well, the dentist just wasn't on my mind. Well, Julia had her five year check up yesterday - the Dr was very impressed with her progress - all things considered...and today, Jack went to the dentist and was a trooper. He actually LIKED it! Little does he know what is in store for the next two appointments - lots of cavities to fill....but the Doc said he would give him some gas before the shots to numb his gums to do the cavities...so hopefully that will go OK. Next Tuesday - 8am.
Shawn wrote a wonderful letter today ("from Julia") that brought things into perspective for me. Not that I haven't felt or thought these things before, but it was very heartwarming for everyone who read it....I will post it here...
Dear Mommy,
I know today is a really hard day for you and it brings back a lot of bad memories. But I wanted to tell you some things that I hope will make you feel better and a little happier.
You feel like you lost me on that sad day four years ago. But you need to know that you really didn’t. The little girl you knew before that scary time is still here, and so is the little girl you know now; we are the same person! And I am a lot like you and that makes me really happy.
I do remember those first few months and couple of years after it happened. It was really scary for me and I could tell it was for you, too. Although I screamed a lot and was really hard to handle, it wasn’t because I didn’t love you. It was because I couldn’t tell you.
And I still can’t. I can’t tell you that I know how hard you’ve been fighting for me and to make me better and how much you have cried and how you almost gave up. I am so glad you didn’t! You have taught me more about being strong and fighting and love than you may ever know. I am also really happy that you have been helping so many people that had something bad happen to them.
I have really been trying to be closer to you and hang out with you more, and I know that you have been trying, too. It makes me really happy when we play together. Please keep trying and not looking at me as someone other than your little girl! The things you thought I would be doing or should be doing don’t matter so much. What matters is that we all have this amazing family; that I am getting better at who I am; and especially that I’m doing things no one said I could do. In a weird way, maybe that’s cooler than being able to brush my teeth or paint my nails right now. I have a lot of other things I am working on! And I couldn’t be doing all of these things without what you did for me. You need to know that I really am very happy!
I don’t really get it either, but somehow I do know that this is the way it is supposed to be. The other night I had a dream where an angel came to talk to me and she said not to worry, that it was all going to be alright, and that this was my path and your path and that no matter what we have each other and that He is watching us. I guess she meant the man in the white robe with all the pretty lights around him that was standing by her. It made me feel really good and that it really is going to be okay.
I said earlier that I can’t tell you what I am thinking, but I know now that I do have a voice. It is because of you, through you, and with you that I do. And we are going to keep doing amazing things, you and me, and everyone will hear us.
Because I am your little girl and you are my Mommy.
I love you,
Julia
Enough said....thanks everyone who still hangs in there to support us. We will all be fine! Today is just another day.
Susan, Julia, Jack, and Shawn
Sunday, December 26, 2010
Four Years Ago Today
Four years ago today, my ignorance overtook me, and I allowed my daughter to get 5 different live virus vaccines poked into her left shoulder. I remember it like it was yesterday. Visions of the day keep going through my head. She screamed and cried, and so did i, well cried anyway, having NO IDEA what I had just done to my baby girl. I would find that out nine days later. Brain damaged - severely - forever.
Once again Julia, I am so very sorry that I just believed what all the Dr's told me. I was trying to do what was best for you. I now know better.
I have learned so much over the last four years. About vaccines, about careers and career changes. About the support from (most) family and friends. About loss of those who I NEVER thought would leave my side. About NEW friends to take the place of the family members I have lost. About GIVING and helping people in need. I think I have become a more compassionate person through this horrific nightmare.
I am thankful this year, that ALL of Julia's needs will be taken care of soon through the Vaccine Injury Compensation Program - that was a long four year battle, but we did it Julia! Soon, the financial worries for your care will disapppear! I just need to hire a really good attorney for you and an even BETTER accountant for me, as paperwork has always been a difficulty for me to keep up with, but I will, with everyone's help - especially an accountant.
Life is good, and I love you more than ANYONE would ever know. Love you baby girl - now and always.
Mom
Once again Julia, I am so very sorry that I just believed what all the Dr's told me. I was trying to do what was best for you. I now know better.
I have learned so much over the last four years. About vaccines, about careers and career changes. About the support from (most) family and friends. About loss of those who I NEVER thought would leave my side. About NEW friends to take the place of the family members I have lost. About GIVING and helping people in need. I think I have become a more compassionate person through this horrific nightmare.
I am thankful this year, that ALL of Julia's needs will be taken care of soon through the Vaccine Injury Compensation Program - that was a long four year battle, but we did it Julia! Soon, the financial worries for your care will disapppear! I just need to hire a really good attorney for you and an even BETTER accountant for me, as paperwork has always been a difficulty for me to keep up with, but I will, with everyone's help - especially an accountant.
Life is good, and I love you more than ANYONE would ever know. Love you baby girl - now and always.
Mom
Wednesday, December 22, 2010
Unemployment ROCKS!
Since I quit my job on Nov. 11th, here is what I we have done..........still working on finding another more suitable job for myself, but in the interim, have been trying to "pay it forward"....if kharma is real - we will get paybacks someday..........not to brag, but........it feels so good we have to share.....
1. Shawn and I got one of my future bridesmaids, Wendy and her two kids out of an abusive household, and they are living here in our unfinished basement until she gets on her feet.
2. Shawn found someone willing to sell Wendy his car for $500 (she has no transportation right now) - which I am going to buy for her and she is going to pay me back.
3. I managed to raise the $100K needed for my daughters therapeutic horse back riding facility, SaddleUp!......from ONE person (with the help of my mother and others) - plus the other small donations I got from fellow veterinarians. And I got a job offer for marketing from home with SaddleUp on a part time basis - AT HOME, so it won't interfere with anything I will do with the hospice/euthanasia job when it gets going.
4. I took on a part time job (just until January) cleaning for my other future bridesmaid, Pam, whose Nanny quit with no notice, who is buried in her home - she has her family of five (one brain injured), and another family of five - two adults and three children (one brain injured) living in her house right now - temporarily.
5. Shawn found someone willing to donate a cleaning crew to help clean up Pam's house - DEEP CLEANING - so she won't be so overwhelmed by the clutter and that is there simply because she doesn't have time to deal with it being a single mom to four of her own kids, and housing 5 others. AND the cleaning crew is donating close to $400 for her to get new sheets, towels, pillows, etc.
SO, that's what we have been doing. It feels SO GOOD to help those in need! WE LOVE IT! BUT, it doesn't pay the bills, but that will come...kharma is a GOOD thing!
Susan, Shawn, and Julia
1. Shawn and I got one of my future bridesmaids, Wendy and her two kids out of an abusive household, and they are living here in our unfinished basement until she gets on her feet.
2. Shawn found someone willing to sell Wendy his car for $500 (she has no transportation right now) - which I am going to buy for her and she is going to pay me back.
3. I managed to raise the $100K needed for my daughters therapeutic horse back riding facility, SaddleUp!......from ONE person (with the help of my mother and others) - plus the other small donations I got from fellow veterinarians. And I got a job offer for marketing from home with SaddleUp on a part time basis - AT HOME, so it won't interfere with anything I will do with the hospice/euthanasia job when it gets going.
4. I took on a part time job (just until January) cleaning for my other future bridesmaid, Pam, whose Nanny quit with no notice, who is buried in her home - she has her family of five (one brain injured), and another family of five - two adults and three children (one brain injured) living in her house right now - temporarily.
5. Shawn found someone willing to donate a cleaning crew to help clean up Pam's house - DEEP CLEANING - so she won't be so overwhelmed by the clutter and that is there simply because she doesn't have time to deal with it being a single mom to four of her own kids, and housing 5 others. AND the cleaning crew is donating close to $400 for her to get new sheets, towels, pillows, etc.
SO, that's what we have been doing. It feels SO GOOD to help those in need! WE LOVE IT! BUT, it doesn't pay the bills, but that will come...kharma is a GOOD thing!
Susan, Shawn, and Julia
Monday, December 13, 2010
santa
if you show julia santa.....she says "ho ho ho"..........her first words....since she was 12 months old - awesome!
Saturday, December 11, 2010
She DID IT!
Among other things....
JULIA POOPED ON THE LITTLE POTTY THIS MORNING!!!!!!!!!!!!!!!!!!!!
YAY!
JULIA POOPED ON THE LITTLE POTTY THIS MORNING!!!!!!!!!!!!!!!!!!!!
YAY!
Thursday, December 2, 2010
WOW, long time no blog......
Not that nothing is going on, but, just been a while since I posted anything!
Julia is doing well. She got a new brace which is pretty complicated, but she seems to tolerate it well and is ACTUALLY keeping her shoes on for the most part! Had to buy two different sizes of Stride Right shoes, which are spendy, but, hey, if it works, it works!
I have officially been unemployed for about three weeks now and am going crazy. In my spare time, I am trying to help Julia's hippotherapy facility with fundraising. They are in dire need of $100K before Jan 31st....so, I am doing what I can. Shawn and I have 7 news lined up to do a story in the next week or so (hopefully). And tomorrow I plan on going to every place I can think of to pitch an effort to raise funds to keep this place going! SaddleUp! Foundation is the name - you can google, and even a small donation will help. Tomorrow I plan on going to all the vet clinics in the area to talk to the owners about the work they do. And possibly all the therapy clinics and special needs schools I can find. What else do I have to do! HAHA!
Actually, I am meeting with Julia's new ABA therapist to go over a behavior plan here tomorrow around lunch time....she will be starting with Julia soon, and most of the work will be done, eventually, by Shawn and I, and her teachers at school once everyone gets trained. Thank God, that I learned at Julia's hearing last month, that this will be covered for the most part when the settlement goes through...another 3-8 months. In the meantime, I have some savings.
Julia has made some great strides lately - still no words or anything, but I think she has a lot going on in that little head of hers! I hope someday she is able to express it!
Anyway, I will try to post more regularly! Thanks to everyone still sticking with us!
Susan and Julia
Julia is doing well. She got a new brace which is pretty complicated, but she seems to tolerate it well and is ACTUALLY keeping her shoes on for the most part! Had to buy two different sizes of Stride Right shoes, which are spendy, but, hey, if it works, it works!
I have officially been unemployed for about three weeks now and am going crazy. In my spare time, I am trying to help Julia's hippotherapy facility with fundraising. They are in dire need of $100K before Jan 31st....so, I am doing what I can. Shawn and I have 7 news lined up to do a story in the next week or so (hopefully). And tomorrow I plan on going to every place I can think of to pitch an effort to raise funds to keep this place going! SaddleUp! Foundation is the name - you can google, and even a small donation will help. Tomorrow I plan on going to all the vet clinics in the area to talk to the owners about the work they do. And possibly all the therapy clinics and special needs schools I can find. What else do I have to do! HAHA!
Actually, I am meeting with Julia's new ABA therapist to go over a behavior plan here tomorrow around lunch time....she will be starting with Julia soon, and most of the work will be done, eventually, by Shawn and I, and her teachers at school once everyone gets trained. Thank God, that I learned at Julia's hearing last month, that this will be covered for the most part when the settlement goes through...another 3-8 months. In the meantime, I have some savings.
Julia has made some great strides lately - still no words or anything, but I think she has a lot going on in that little head of hers! I hope someday she is able to express it!
Anyway, I will try to post more regularly! Thanks to everyone still sticking with us!
Susan and Julia
Thursday, November 4, 2010
It is DONE
We met with the special master today, along with Julia's attorney and Life Care Planner, along with the opposing Dept of Justice's attorney and LCP.....Our side was highly favored, and the last issue was settled in what I believe was a very fair way. The rest of the issues have been agreed upon by both sides.....I do not have any numbers to report on her settlement - should have the check and annuity set up within the next six months. Though I do not know ANY numbers, aside from ABA therapy which was settled today, I suspect it will all be very good for Julia. Praise God!
Thank you to all of those who have not left my side during this ordeal. It has been very up and down for everyone. Thank you mostly to my mother, who has told me she would always stick with me no matter what. Thank you to Roger, for loving Julia, with all her quirks (more than I think you love the others). Thank you for stepping up and fulfilling the role of grandpa for my kids. Thank you mostly to Shawn secondly, who stepped into this relationship, and was probably blindsided by what he got himself in to. Sure, the kids were cute when we were dating, but as time went on, and his time with us became more of a permanent nature, not three days here four days home, and with all of the realities of it hitting him - he did not run. (well, a couple of times, but he always came back...haha). And now we are going to marry in June. Thanks for your patience. Thanks for understanding my fight. Thanks for understanding my integrity. Thanks for supporting my job change in such trying times. Thanks for EVERYTHING you do for the kids. And thanks for putting up with me and my up and down emotions....sometimes down for long periods of time.
Thank you to my new friends I have met along the way - most notably, Pam, who sticks by me even when I just want to go shoot my gun out my car window. Who thinks I am crazy for quitting my job, but "gets it" and supports me. Who takes time out of her hectic days as a single mom to three typical boys and a brain injured daughter, to do things, like be my matron of honor, to come to fourth of july with us, to come for jacks birthday, to come to MY birthday last night (allbeit, 45 minutes late!! haha). For being MY ROCK, even when weeks go by that we don't talk. Thank you Pam for teaching me about advocating and not being afraid to tell it like it is and stand up for yourself.
Thank you Leticia, a single mom of two, one typical, one 21 yr old not typical child. Your patience and sense of humor and positive outlook on your kids lives really resonates with me - even if I don't show it just yet.....you have been doing this much longer than I have, and I hope to get to the place where you are in the next 15 years. I have only known you a short period of time, but would consider you as one of my close friends - I would never hesitate to share anything with you or confide in you in any way.
Thank you Kayanna, Anna, and Trina for all your help with Julia during the days and nights. Anna, you have stuck it out the longest and I truly appreciate all the time and understanding you give to Julia and our family. Kayanna - you took over the daycare after Dawn moved away like you knew exactly what you were doing - like it was a job created for YOU. I cannot thank you enough. Trina - I know with five jobs, fitting Julia in is an option for you, yet you continue to help when you don't have to, and that means so much to us too. I hope you know that.
There are many more friends and family members to thank, but these few are the ones sticking out right now.
Thank you to the many compassionate doctors and therapists who have helped me with this legal battle over the last four years. Many of you know me by my first name. Dr Stage, thank you for meeting me after hours twice now when Julia was tantruming and I just KNEW something medical was wrong - but it wasn't. Thank you for watching Julia and making cookies with her that night so that shawn and I could take Jack to a movie. Thank you for being an awesome pediatrician - nonjudgemental, real. Thank you to all of Julia's specialists, most notably, Dr Bjorker, who with two days notice, wrote a letter to the court stating the needs of ABA therapy for Julia - YOU helped us win today....in an amazing way. Thank You Harla Frank, who, during a midst of her own issues, took the time to prepare for and come to the hearing today - HARLA - YOU DID THIS. Your testimony was fabulous! I hope you know how much it meant to us. You are HIRED! Lets get you going!
Thank you to the Rise School of Denver. Without you, Julia would have never come this far - though she has a ways to go for sure! Your patience with this process has surpassed my expectations. I hope you understand how thankful we are for your presence in Julia's life and education.
And to the Dr's at Miami Children's hospital who told me it couldn't possibly be the vaccine the caused her injury - I hope someday you will accept the fact that vaccines DO cause brain injuries. THEY DO. Please do not cover it up to other families in the future. If you would like a copy of her settlement when I get it, you are welcome to it. I just want people to be honest and real.
I know there are many I have forgotten, and many that have "fallen by the wayside" that may or may not get this message...but it is primarily written for those who stuck it out and believed in my family and MY ability to get this done. IT IS DONE!
Thank you GOD for taking me down this path - it has been a long and difficult one, and I'm sure there is more to come, but you have reintroduced yourself into my life and I am forever grateful!!!!
Susan (Jack,Julia,and Shawn)
Thank you to all of those who have not left my side during this ordeal. It has been very up and down for everyone. Thank you mostly to my mother, who has told me she would always stick with me no matter what. Thank you to Roger, for loving Julia, with all her quirks (more than I think you love the others). Thank you for stepping up and fulfilling the role of grandpa for my kids. Thank you mostly to Shawn secondly, who stepped into this relationship, and was probably blindsided by what he got himself in to. Sure, the kids were cute when we were dating, but as time went on, and his time with us became more of a permanent nature, not three days here four days home, and with all of the realities of it hitting him - he did not run. (well, a couple of times, but he always came back...haha). And now we are going to marry in June. Thanks for your patience. Thanks for understanding my fight. Thanks for understanding my integrity. Thanks for supporting my job change in such trying times. Thanks for EVERYTHING you do for the kids. And thanks for putting up with me and my up and down emotions....sometimes down for long periods of time.
Thank you to my new friends I have met along the way - most notably, Pam, who sticks by me even when I just want to go shoot my gun out my car window. Who thinks I am crazy for quitting my job, but "gets it" and supports me. Who takes time out of her hectic days as a single mom to three typical boys and a brain injured daughter, to do things, like be my matron of honor, to come to fourth of july with us, to come for jacks birthday, to come to MY birthday last night (allbeit, 45 minutes late!! haha). For being MY ROCK, even when weeks go by that we don't talk. Thank you Pam for teaching me about advocating and not being afraid to tell it like it is and stand up for yourself.
Thank you Leticia, a single mom of two, one typical, one 21 yr old not typical child. Your patience and sense of humor and positive outlook on your kids lives really resonates with me - even if I don't show it just yet.....you have been doing this much longer than I have, and I hope to get to the place where you are in the next 15 years. I have only known you a short period of time, but would consider you as one of my close friends - I would never hesitate to share anything with you or confide in you in any way.
Thank you Kayanna, Anna, and Trina for all your help with Julia during the days and nights. Anna, you have stuck it out the longest and I truly appreciate all the time and understanding you give to Julia and our family. Kayanna - you took over the daycare after Dawn moved away like you knew exactly what you were doing - like it was a job created for YOU. I cannot thank you enough. Trina - I know with five jobs, fitting Julia in is an option for you, yet you continue to help when you don't have to, and that means so much to us too. I hope you know that.
There are many more friends and family members to thank, but these few are the ones sticking out right now.
Thank you to the many compassionate doctors and therapists who have helped me with this legal battle over the last four years. Many of you know me by my first name. Dr Stage, thank you for meeting me after hours twice now when Julia was tantruming and I just KNEW something medical was wrong - but it wasn't. Thank you for watching Julia and making cookies with her that night so that shawn and I could take Jack to a movie. Thank you for being an awesome pediatrician - nonjudgemental, real. Thank you to all of Julia's specialists, most notably, Dr Bjorker, who with two days notice, wrote a letter to the court stating the needs of ABA therapy for Julia - YOU helped us win today....in an amazing way. Thank You Harla Frank, who, during a midst of her own issues, took the time to prepare for and come to the hearing today - HARLA - YOU DID THIS. Your testimony was fabulous! I hope you know how much it meant to us. You are HIRED! Lets get you going!
Thank you to the Rise School of Denver. Without you, Julia would have never come this far - though she has a ways to go for sure! Your patience with this process has surpassed my expectations. I hope you understand how thankful we are for your presence in Julia's life and education.
And to the Dr's at Miami Children's hospital who told me it couldn't possibly be the vaccine the caused her injury - I hope someday you will accept the fact that vaccines DO cause brain injuries. THEY DO. Please do not cover it up to other families in the future. If you would like a copy of her settlement when I get it, you are welcome to it. I just want people to be honest and real.
I know there are many I have forgotten, and many that have "fallen by the wayside" that may or may not get this message...but it is primarily written for those who stuck it out and believed in my family and MY ability to get this done. IT IS DONE!
Thank you GOD for taking me down this path - it has been a long and difficult one, and I'm sure there is more to come, but you have reintroduced yourself into my life and I am forever grateful!!!!
Susan (Jack,Julia,and Shawn)
Wednesday, November 3, 2010
prayers
PRAYERS for tomorrow...damages hearing...only one issue they are fighting over...her BEHAVIOR, and NEED for therapy....seriously???????????????? Julia's LCP, who has been doing this for over 17 years, has NEVER had to go to hearing over one issue, especially BEHAVIOR in a BRAIN INJURED CHILD. But, alas, everyone has flown in from all over the globe, and we will be there for the whole thing tomorrow starting at 9am....Julia included....hahahahahahahaha that will last about 25 minutes. She WILL be there until the special master asks her to leave. HHHHMMMM......WHY ARE WE HERE???????????????????? BEHAVIOR??????????????????? AND YOU ARE ASKING HER TO LEAVE???????????????????????? Plantiff rests its case. Met with the Life Care Planner and Attorney tonight at my 40th bday party...WOO HOO!!! but it was good. Everything will be OK. Everyone is just shocked it has come to this. I KNOW WHY, and anyone who wants to know can private email me.....has to do with ABA and its "primary use"....for autism.....enough said???
Wednesday, October 20, 2010
Dr Wakefield!
I MET HIM! WOO HOO! What an honor to hear him speak and to actually speak to HIM briefly. I have been reading his books, listening to his interviews, following his knowledge for the last four years, and TONIGHT - I MET HIM! Even got a picture! I admire him for sticking to his guns on his controversial issues - as I have as well with leaving typical practice because of my views on the vaccination protocols for animals. Two peas in a pod, I guess! :)
Monday, October 18, 2010
Tomorrow.......
So, tomorrow is more than a "typical tuesday" of PT, OT, Aug Com....we have to get fitted for julia's (8th??) brace before her therapies....we were hoping the botox she had last month would restraighten her leg enough for the current brace to continue working, but, alas....NOPE. Time for a new one. This one is going to be pretty "complex"! It can work is two ways - as a tall one up to her knee, or as a short one only to her ankle.....so HOPEFULLY, we can make EVERYONE happy with this one, as none of her therapists can agree on what is best...and what do I know.....So, this convertible one should be great!
Expecting to hear from Julia's attorneys soon - if not, hearing is set for the fourth of November.....then at least this part will be done....then just to figure out how to go forward....which attorney do I need for this? So confusing. NEVER thought I would need so many attorneys. YUCK!
Anyway, it will all work out. As far as job prospects - I have a potential spay/neuter ONLY practice that wants me for at least two fridays in November...and they may hire me on for Friday, Saturday, and Sunday for a while. OR, if they don't....I have a potential offer with a mom of a 21 year old CP child (adult) who needs care every weekend....from $50 an hour to $15.....but, hey, if I can learn what may lie ahead for Julia - it would be great experience until Caring Pathways takes off! I am excited about either. AND excited to start exercising on my "days off" until Caring Pathways needs me! It will all work out. Forget the bad dreams I've been having lately.....as one friend put it - "I have always been a firm believer that if you are doing what is morally right, the creator of the universe will make a way out for you and provide abundant blessings." So, I am counting on that! :)
Good night all - and pray for julia's patience tomorrow during all the therapy and brace fittings!
Susan
Expecting to hear from Julia's attorneys soon - if not, hearing is set for the fourth of November.....then at least this part will be done....then just to figure out how to go forward....which attorney do I need for this? So confusing. NEVER thought I would need so many attorneys. YUCK!
Anyway, it will all work out. As far as job prospects - I have a potential spay/neuter ONLY practice that wants me for at least two fridays in November...and they may hire me on for Friday, Saturday, and Sunday for a while. OR, if they don't....I have a potential offer with a mom of a 21 year old CP child (adult) who needs care every weekend....from $50 an hour to $15.....but, hey, if I can learn what may lie ahead for Julia - it would be great experience until Caring Pathways takes off! I am excited about either. AND excited to start exercising on my "days off" until Caring Pathways needs me! It will all work out. Forget the bad dreams I've been having lately.....as one friend put it - "I have always been a firm believer that if you are doing what is morally right, the creator of the universe will make a way out for you and provide abundant blessings." So, I am counting on that! :)
Good night all - and pray for julia's patience tomorrow during all the therapy and brace fittings!
Susan
Monday, October 11, 2010
WHEW!
My brain has felt like a walking contradiction for the last four years since the vaccine injury to Julia. I have 30 more days to deal with that. Looking for work in a totally different field....and will find it...We will be ok. Its going to be tight for some time until I figure it out, but, I just have this calm feeling that it is all OK. It is HIS plan, and we will be fine! No more vaccines for me - in 30 days.
Thank you God, and Larry Magnuson, and Don, my future former boss, for being so understanding.....And Lord help me Kohls, or Rod letting me be a snow plow driver. Time for something new!!!! SO EXCITED, yet scared. I may be doing wrong by my kids for the next few months, but the potential of the years after is outstanding! Larry, I am here for you!
Susan, Shawn, Jack, and Julia
Thank you God, and Larry Magnuson, and Don, my future former boss, for being so understanding.....And Lord help me Kohls, or Rod letting me be a snow plow driver. Time for something new!!!! SO EXCITED, yet scared. I may be doing wrong by my kids for the next few months, but the potential of the years after is outstanding! Larry, I am here for you!
Susan, Shawn, Jack, and Julia
Wednesday, October 6, 2010
Settlement is almost DONE!
We are 99.9% done with the settlement......no numbers yet.....they can't tell me until all attorneys agree - but we are almost there. Yeah Julia - you WILL be taken care of forever. I LOVE YOU BABY GIRL!
Written (supposedly) by a child with autism......very true.....Julia and our family to a "T"
I understand that we will be visiting each other for some get-togethers this year. Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt or silly and out of control, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities. Some may not speak, some will write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are ALL different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you – I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Get-togethers are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if I had a private place set up to where I could retreat every time I go to get-togethers.
If I cannot sit at the meal table, do not think I am misbehaved or my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people – I just have to get up and move about. Please don’t hold up your meal for me – go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not picky – I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.
Don’t be disappointed if Mom hasn’t dressed me in the best clothes there are. It’s because she knows how much stiff and frilly clothes drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear crabby. Things have to be done in ways I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things – just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation” or “stimming.” I might rock, hum, flick my fingers, tap a string, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, laughing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kinda like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverating behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support and not rude remarks.
Gatherings are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person – an interesting person. I will find my place at these celebrations that is comfortable for us all, as long as you’ll try to view the world through my eyes!
-Author Unknown
I do not know who wrote this, I do feel it can help so many, Bless the child that wrote this letter.
Sometimes I may seem rude and abrupt or silly and out of control, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities. Some may not speak, some will write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are ALL different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you – I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Get-togethers are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if I had a private place set up to where I could retreat every time I go to get-togethers.
If I cannot sit at the meal table, do not think I am misbehaved or my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people – I just have to get up and move about. Please don’t hold up your meal for me – go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not picky – I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.
Don’t be disappointed if Mom hasn’t dressed me in the best clothes there are. It’s because she knows how much stiff and frilly clothes drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear crabby. Things have to be done in ways I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things – just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation” or “stimming.” I might rock, hum, flick my fingers, tap a string, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, laughing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kinda like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverating behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support and not rude remarks.
Gatherings are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person – an interesting person. I will find my place at these celebrations that is comfortable for us all, as long as you’ll try to view the world through my eyes!
-Author Unknown
I do not know who wrote this, I do feel it can help so many, Bless the child that wrote this letter.
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