Well today Samuel started his first day of school at the private school here in town. He did a great job and went the whole day. The teacher seems very passionate about teaching the students and great with Samuel. Time will tell as we continue on the journey….
I have struggled with whether I should share Samuel’s test result from our trip to Boston…..Well for those of you that are new to following the blog, we went to Boston to participate in a study on children that were exposed to valproate in utero. They were testing to see if these children are on the autism spectrum….Well today the results arrived in the mail. As I looked at the envelope, my heart began racing…I was hoping that it was some additional paperwork to fill out for the researchers yet I knew in my stomach that it would be the results from the testing. As I stood there and read a 5 page summary from the doctor tears began to fall. I read the words that that I had heard from some therapists and doctors in the past. Samuel is on the autism spectrum. I began to cry uncontrollably and thought I can’t breathe… for so long we have made sure that there was not anything on his records about autism. All I could do was read the words that have been for so long spoken but not written….The thoughts that came to my mind were how I took the seizure medicine…The guilt began to creep back into my life as I stood there rereading the report. All I could do was stand there helpless and grieve once again. Would this nightmare ever end? What would become of my sweet little boy?
I called a friend to share about the results and all they could do was say “breathe and I wish I was there…” I needed to breathe and cry…It has taken me several hours to process the things that were already known but now written on paper. I know that there is a bigger plan through all of this….I have had the opportunity to meet so many wonderful people because of this journey and they have forever changed my life……Now it just confirms that woman’s health related to epilepsy is my top priority for the “My Epilepsy Story”. We will focus on females from infants through adulthood. Our story is one that is not talked about and shared. I am driven even more to share about what has happened with our family. These tears and fears will be used for something bigger. I am so glad that we have had the opportunity the participate in research. I would encourage everyone to participate in medical research so we can further the cause for epilepsy.
These tears are tears of guilt, sadness, and so much more…..I know that Samuel will continue to amaze us as he continues on his journey…This will not define him and this will not stop me from sharing but rather encourages me to push for more in the area of woman’s health related to epilepsy. So tonight as I sit here and think of the last 8 years, I am encouraged that today was a start to our new life….
I will leave you with this…
“In the end, it doesn’t matter how many breaths you take, but how many moments took your breath away.” ~Anonymous
