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
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