Dear FDA, YOU made me this way! (Part Two)

After receiving her inoculations, Pooka recovered seemingly symptom free within a day or so.  I was back off to Howard University in Washington, DC.  Returning to complete the Spring semester of my sophomore year.  I was fortunate enough to be able to leave the girls with my mother on the long commute from Washington, DC to upstate NY.  I traveled this route every week, leaving DC on Thursdays and returning on Monday nights.  Having been doing this commute for nine months, the drive was becoming easy...or at least the commute had become habitual. 

Traveling back and forth had presented its own set of challenges.  Over the course of nine months, I had seen so many accidents and had quite a few near death experiences.  Every successful trip home proved to be a glorious victory.  Coming home to be with my growing girls was exactly where I wanted to be.  I knew if I wanted to provide the best life for them, I would need to finish college and I would need to make this sacrifice.  There were other sacrifices that came with the commute from DC to NY.  Time for one, suddenly became in extreme demand with a very scarce supply readily available.  Every minute of every day proved to be of utmost importance.   And my time to be "Mommy" for the three and a half days was so treasured that I often got lost in my longing to just stay in that space.  The space of unconditional love and devotion that I gained from my life giving force and support.  My children.  Nothing feels so good as having these little girls that I so much adore and to know that the adoration and love that is returned is so pure, so unconditional, so perfect.  Being in this space for three and a half days was such a dream, it was always hard to leave and return to the hustle and bustle - the road to success...

In addition to time, another sacrifice made was the gaps in space.  Coming home in the middle of the night on a Thursday and staying until early Monday morning created gaps in my ability to recognize and monitor the development of my children.  While I still felt connected to my girls, even when away, I was not able to discriminate between normal and abnormal behaviors.  When I left home after Pooka received her most recent dose of inoculations, she was saying a few words.  At some point over the next few months, it seems as if she stopped saying the words but because of the gaps in space, I can never seem to recall when it happened and the prerequisites leading up to the loss of language.  I do remember that at some point she seemed to be growing and developing into a social, budding butterfly and within a few months, she began to develop into an isolated, antisocial little girl.  It appeared that Pooka may have suffered a loss of hearing.  This theory always proved itself false whenever we decided to watch a Disney video.  As soon as a Disney movie was put into the VCR, Pooka would awaken out of a deep sleep from the top floor of the apartment just to make it in time as if it were the premiere.  Seeing this occur numerous times over, we soon ruled out that hearing was a problem.  But...there was definitely a problem.

Over the space of the next six months, Pooka wanted nothing to do with people.  At some point, speaking to her seemed totally useless.  It's like she was completely lost within herself.  Her desire for small shiny objects, preferably in pairs left us baffled and confused.  And her sleep schedule suddenly became totally and completely off course.  Beginning at 15 months of age, Pooka suffered great bouts of insomnia.  Regularly, I would wake at 3 am and find Pooka wandering around the apartment, climbing on the dining room table.  Sometimes I wouldn't catch her awake, but after not finding her in her crib, or on the table in the dining room, I would find her sleeping on the cold tiled floor of the kitchen. 

At 18 months of age, after putting Pooka to bed, and putting myself to bed, I was awoken by a loud thump, subsequently followed by shrieking screams of pain.  Running into my girls bedroom, I found Pooka on the floor.  She had apparently jumped out of her crib and injured herself.  After bringing her into my bedroom and observing her for a while, when it seemed her moans of pain were not subsiding and with the development of a slight fever, her father and I decided to bring her to the emergency room.  Following her check up and x-rays, it was discovered that Pooka had broken her elbow when jumping out of her crib.  The idea of her crash landing was so absurd to the medical professionals on duty that they decided they were going to report the incident to Child Protective Services.  Hysterical, I called my family members who rushed to the hospital.  After seeing the rush of support, the doctor on duty had second thoughts about the report.  Oddly enough, while in the ER, I got to know another family who claims they are in the ER every week with their son.  This time, he was suffering from 2nd degree burns.  Last week, he needed several stitches on his leg for playing with an ax while outdoors.  The doctor on duty didn't think it was necessary to report this loving couple to Child Protective Services, despite their frequent visits to the ER for their 5 year old son.

I began to realize that this was just the beginning of a tumultuous journey regarding Pooka, misunderstandings and character judgments.  As a young, unmarried, minority mother, I would soon learn that I would have to fight twice as hard for support services and be subjected to twice as much blame and prejudice.

Over the next six months Pooka continued to isolate herself.  Speaking to loved one's and even the pediatrician about Pooka's dilemma, I was told that children "grow out" of these things and that I "shouldn't worry."  Inherently, I knew something drastic happened affecting Pooka's life path.

I continued my commute from DC to upstate NY the next semester. During winter break, a long time family friend came to visit.  He had a niece the same age as Pooka.  As he observed her, he told me straight-forward, "you need to take her to see someone, her behavior is not normal."  This was the first time my own feelings were confirmed by someone outside of myself.  I welcomed his comment as a relief and was glad that he was able to identify that whatever Pooka was going through was not just growing pains.  I scheduled the doctor's appointment for the next day.

We've been here before. 

For some reason, Pooka isn't running away from the familiar, jolly pediatrician's office today.  She has a pair of the shiny something in her possession so she seems contented.  She doesn't seem fazed by the crowd of sniffling, sneezing youngsters and their doting parents.  It doesn't appear that she even sees them.  She is so consumed with her shiny pair of something, I wonder if she even sees me.

We're next to be called.  I'm nervous.  I don't think there is anything that could prepare me for what I was about to hear.  I was prepared to hear that she needed speech therapy for loss of language - and I was pretty sure that would do the trick.  I was not prepared to receive what actually came next. 

As the nurse practitioner observed Pooka with her small shiny something's, she asked me several developmental questions.  It didn't take her long to deliver the news.  When she told me that Pooka probably has autism, I thought she was speaking a foreign language.  I mean, I had heard of the word autism but I had no notion of what it was, what caused it, what cured it.  She delivered this blow and left the room.  But, she didn't leave before telling me that Pooka would have this for the rest of her life, there was no cure and that she would probably never speak.  And she left me there, alone.

So alone...and lost...and...

What does this mean? How could this have happened?  My budding social butterfly oppressed with an incurable brain disorder.  How?  Why?

I look up autism in the dictionary.  The dictionary explains that it is a childhood version of schizophrenia.  It's really hard for me to make the connection of Pooka being a schizophrenic.  Unsatisfied, I turn to the world wide web.  There's not much information available but with enough seeking, I am able to find some truly valuable resources.  And the resources that I find, enable me to think.  I begin to retrace time and gaps in space.  I begin to retrace the sacrifices made over the past year.  I am forced to fill in the gaps and use my valuable time to remember the events that took place leading up to the change in Pooka.  Nothing is making any sense.  I find articles on this growing surge of "regressive autism."  Parent's dumbfounded at the negative development of their sprouting toddlers.  That's me!  That's us!  I continue my search.  So many people are pointing the finger at the MMR vaccine.  Really?  This cannot be.  I can't believe this.  I continue researching, more MMR, more autism.  It really cannot be that simple.  MMR = autism.  No way.  I've had all my MMR shots, my eldest daughter, my siblings, my friends - I mean everyone I know.  There should be more autism than this if MMR = autism.  And then I'm thinking, and filling in the gaps in space. 

And then I remember.  I remember that I could not have my final MMR vaccine at 17 years old because I was pregnant with my first daughter.  I remember after having her I still could not comply because she was nursing.  I remember after weaning her I was still non compliant with my University's mandates. I remember having my final MMR at 18 years old.  I remember speaking to my daughter's pediatrician about side effects.  I remember him saying not to conceive for at least three months after being administered the vaccine.   I remember conceiving three months later.  I remember wondering if this shot would effect my growing fetus.  I remember thinking that it wouldn't since it's been three months.  I remember a healthy pregnancy.  I remember a smooth, quick delivery.  I remember a strong healthy baby. 

And then I remember bowel dysfunction of a newborn baby.  How does a 100% breastfed infant have constipation?  I concentrate the focus of my research on bowel disorders of infants.  That leads me to bowel disorders and measles.  But Pooka hasn't had the measles vaccine - at least not a birth.  Ahhh - but I did.  Three month prior to conception, I had a measles vaccine. 

And then I remember thinking that Pooka may not need the vaccine herself, since she may already have immunity from me.  I remember asking the pediatrician if her immunity can be tested prior to vaccine administration since I had already had the shot shortly before conception.  I remember him saying that she needed the shot herself.  I remember not pushing the issue.  I remember the eerie feeling I had the day that Pooka received her shot.  I remember her crying and running toward the glass doors.  I remember feeling that I should put it off for some time in the future.  I remember testing my judgment and following doctor's orders.  I remember feeling that I did the right thing.  I remember Pooka recovering from the inoculation.

And then I remember, my recent memories of loss of language, loss of self.  My budding social butterfly evolving into an antisocial, isolated little girl.  This connection with MMR = bowel dysfunction = autism seems so abstract, so unreal.  But it also seems very real.  I often wonder if I had not given Pooka that shot that day, if I had waited until she was a few years older and her own immunity were stronger - I wonder if the result would have been the same.  I wonder if my budding butterfly would have continued to spread her butterfly wings or if without the shot, she would have still climbed back into her cocoon. 

Given the opportunity to relive this - I would have followed my feelings and I would have listened to Pooka.  I would have listened to the pleading that I saw in her eyes.  I would have listened to her running towards the glass doors.  I would have given her more time.  I would have run from the safety threshold of the pediatrician's office and safely wrapped her in my arms.  I would have run towards doubt and shied away from confidence.  I would have...

Science is an amazing thing.  It's amazing how what is perceived to be true can change in an instant under the right conditions, with the right controls and proper variables in the testing environment.  It is absolutely astonishing how what is thought to be can change if any of the factors of the testing environment change and science has to adapt a new truth, until someone else disproves that truth. The fact that we base our whole lives on experimentation amazes me.  Laws and regulations are set up and based upon scientific experimentation.  Scientific experimentation that can change in an instant.  I believe wholeheartedly that Pooka became autistic from exposure to the MMR vaccine.  I believe her immunity was compromised prior to birth and inoculations were not in her best interest.  I believe there is a good chance that she would not be "autistic" if she had not received the MMR vaccine at such a young age.  And as a result,

I don't have to defend what I believe to be true;
I don't have to vaccinate;
I don't have to buy into pharmaceutical propaganda;
I don't have to debate with those that choose to follow FDA/CDC protocol;
I don't have to believe that things can't change;
I don't have to accept that Pooka can't grow;
I DON'T HAVE TO!

Because no one, not the FDA, not the CDC, not government lobbyists, not pharmaceutical manufacturers, not the President of the United States - no one can change the events that lead up to Pooka's diagnosis.  So...

I don't have to.

© Heather Berg 2015