getting the courage to let the world know our private journey
This week, I chose to share Hunter's PANDAS/AUTISM video on Facebook.
I originally created the video for a presentation that I did, but as we drew closer to PANDAS Awareness Day, I thought I would post it in FB to raise awareness. After all, if you don't have a family to tie a cause to, awareness days come and go, and are soon forgotten.
October 9th arrived, and I chickened out. It wasn't that I was embarrassed, but I didn't know if I was ready to take the step and tell the world that Hunter has Autism just to raise awareness.
A couple of weeks went by, and as I made breakthroughs with my patients, sat on the phone for hours with insurance companies, and went through our stack of medical bills, I realized that it was time.
When Hunter was first diagnosed, I felt like I had to tell the world. At that point, I think it was more of a "martyr" type outlet. Yes, he is having a fit in the store. Yes, he is hitting me- feel sorry for me! My son has Autism!
As I moved through the stages of grief, I sat in the denial and anger period. I was sitting in therapy almost 20 hours per week and thinking NO ONE needs to know this sadness. No one needs to know the other side to my story, why I am late to pick up Paige from dance due to driving downtown for an intensive outpatient program, or why we were leaving church early yet again due to non-compliance. Let those people think what they want. I don't CARE!
Finally, I came to the stage of acceptance. I didn't accept that this was the life we were going to live, for I still believe that one day we will recover this sweet boy. I accepted that Autism wasn't just a word- it was "our" word. Our normal. Our journey.
I finally took ownership.
Once you can own something so devastating, so heartbreaking, so life changing, you let go of the anger, the imminent sadness, and the self-pity.
There are days when it is all I can do to keep it together- but then I see a breakthrough, a pat on the shoulder, a simple note from a teacher telling me what a joy Hunter is in class- and even though I know how hard he has worked, and how far he has come, it makes every fight worth it to hear another person tell me they see it, too.
After a diagnosis, I think we go through an identity crisis. Who am I in this new life? How am I going to go on when my normalcy has been stolen?
As a friend, how would I devote enough time to keep those relationships strong, when support is what I needed the most?
As a wife, I tried to figure out the role I would play in balancing the emotional and physical toll parenting a child with special needs takes, and just how to have enough energy for my husband, the one that I used to give my everything to- the one who I vowed to love for better and for worse.
As a Christian, I tried to figure out where I sinned great enough to deserve a lifetime of sadness and struggles. How could a God who loves so much allow so much pain? Was it really his will to take away our normalcy?
As a mother, I tried to figure out where I failed. How did I not figure this out from the start? Why didn't I pursue a diagnosis sooner, and how did I let this awful disease progress this far?
It was then that I realized this wasn't about me.
We were given this journey, yes, truly GIVEN this journey, to live this life and fight not only for our son, but for every other family who has lost a child into the world of Autism.
So I shared it.
I linked it.
And others linked it as well.
I couldn't have asked for a better compliment- the kind words were wonderful and I will go back and read those on the hardest of days when I feel like giving up, but every "like", every "thumbs up," every "share" meant someone heard our story.
Someone was made aware of PANDAS.
And someone was made a believer in Autoimmune Autism.
We will win this battle. We will be part of something bigger one day-
and Hunter will emerge victorious in the fight with Autism.
I originally created the video for a presentation that I did, but as we drew closer to PANDAS Awareness Day, I thought I would post it in FB to raise awareness. After all, if you don't have a family to tie a cause to, awareness days come and go, and are soon forgotten.
October 9th arrived, and I chickened out. It wasn't that I was embarrassed, but I didn't know if I was ready to take the step and tell the world that Hunter has Autism just to raise awareness.
A couple of weeks went by, and as I made breakthroughs with my patients, sat on the phone for hours with insurance companies, and went through our stack of medical bills, I realized that it was time.
When Hunter was first diagnosed, I felt like I had to tell the world. At that point, I think it was more of a "martyr" type outlet. Yes, he is having a fit in the store. Yes, he is hitting me- feel sorry for me! My son has Autism!
As I moved through the stages of grief, I sat in the denial and anger period. I was sitting in therapy almost 20 hours per week and thinking NO ONE needs to know this sadness. No one needs to know the other side to my story, why I am late to pick up Paige from dance due to driving downtown for an intensive outpatient program, or why we were leaving church early yet again due to non-compliance. Let those people think what they want. I don't CARE!
Finally, I came to the stage of acceptance. I didn't accept that this was the life we were going to live, for I still believe that one day we will recover this sweet boy. I accepted that Autism wasn't just a word- it was "our" word. Our normal. Our journey.
I finally took ownership.
Once you can own something so devastating, so heartbreaking, so life changing, you let go of the anger, the imminent sadness, and the self-pity.
There are days when it is all I can do to keep it together- but then I see a breakthrough, a pat on the shoulder, a simple note from a teacher telling me what a joy Hunter is in class- and even though I know how hard he has worked, and how far he has come, it makes every fight worth it to hear another person tell me they see it, too.
After a diagnosis, I think we go through an identity crisis. Who am I in this new life? How am I going to go on when my normalcy has been stolen?
As a friend, how would I devote enough time to keep those relationships strong, when support is what I needed the most?
As a wife, I tried to figure out the role I would play in balancing the emotional and physical toll parenting a child with special needs takes, and just how to have enough energy for my husband, the one that I used to give my everything to- the one who I vowed to love for better and for worse.
As a Christian, I tried to figure out where I sinned great enough to deserve a lifetime of sadness and struggles. How could a God who loves so much allow so much pain? Was it really his will to take away our normalcy?
As a mother, I tried to figure out where I failed. How did I not figure this out from the start? Why didn't I pursue a diagnosis sooner, and how did I let this awful disease progress this far?
It was then that I realized this wasn't about me.
We were given this journey, yes, truly GIVEN this journey, to live this life and fight not only for our son, but for every other family who has lost a child into the world of Autism.
So I shared it.
I linked it.
And others linked it as well.
I couldn't have asked for a better compliment- the kind words were wonderful and I will go back and read those on the hardest of days when I feel like giving up, but every "like", every "thumbs up," every "share" meant someone heard our story.
Someone was made aware of PANDAS.
And someone was made a believer in Autoimmune Autism.
We will win this battle. We will be part of something bigger one day-
and Hunter will emerge victorious in the fight with Autism.
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