I decided to update friends and family in a blog post. It’s the only way I feel like I may be able to somewhat express the so many emotions that are going through my mind. And….it’s a lot of words.
So many of you, family and friends, have prayed for Benjamin over the past week for his testing and prayer for the outcome. So many have reached out in various ways to my family and I can’t thank you enough. To think, nothing “tragic” has impacted us, just a speedbump in our road – yet the overwhelming love has been remarkable. Almost makes me feel guilty. Undeserving of such an amazing tribe. I don’t deserve it.
With that said…I wanted to share the update on Benjamin. We weren’t supposed to get results until Monday, however, yesterday we received a call for Ben.
Background to this – Ben had his first witnessed – really big and really scary seizure in May 31st. We rushed him to the hospital where they did a bunch of tests. Since then, there have been activity at night time which seem to be seizure activity while he is sleeping. Ben’s EEG conformed he was having seizures and the results of his tests would indicate he would have more.
After more seizures and more follow up the Neurologist was concerned there was a vascular issue or possible tumor and in Ben’s left lobe of his brain – insert the waiting and MRI.
The MRI cleared his left lobe of his brain. No tumor. However, showed what appeared to be a “mass” in his right frontal lobe. After more review they believe the “mass” is actually something called grey matter heterotopia. This is when his brain was forming, cells clumped together in an area they shouldn’t have and his grey matter in his brain is where his white matter should be – creating this. The physician said “don’t think of this like a tumor, think of it like a scar” because “it will never go away, he will have it for the rest of his life”.
She explained – The concerns with this….seizures, developmental delays, intellectual delays. As far as the delays this could be with learning and processing, motor skills or emotional/behavioral skills. They could progress or show more delays as he gets older. He could age – but his brain could slow down. As far as the seizures. These seizures related to this – typically “show up” later. Within the second decade of his life.
So, while they think he will grow out of his diagnosis of “Rolandic Epilepsy” seizures he’s randomly been having (that has NOTHING to do with this new discovery) as he is growing out of those seizures, he will grow into these seizures caused by this heteropia.
She said “this will likely bring us challenges in the future”. She doesn’t want us to be scared – but wants us to be prepared and know that this is something we will forever watch and “wait” essentially for.
I did ask her as well as his PCP does this change his diagnosis of Autism. They both confirmed and agreed Ben does still have the diagnosis of Autism and this diagnosis has nothing to do with that.
We have a follow up in a few weeks to sit down with her, visualize the MRI, process what has been told and ask questions.
All of that to say…..
I know what it is like to witness great tragedy. I’ve been a pediatric nurse – and taken care of the unthinkable. I have friends most recently who have lost their babies and made decisions that even brought me to tears being several degrees of separation away. I know that I will forever be thankful that we didn’t get the news we could have. We didn’t hear the “C” word. So so much of me even feels guilty that I’m so upset when I have friends who have lost their babies.
While I tell people this news – and they focus on the good – I am focusing on the negative. This in a way makes me feel guilty.
I feel guilty for being upset. I feel guilty for being sad. I feel guilty that I’m losing sleep and hate this so much. I feel guilty for being mad as hell that it never ends. It’s always something.
I want to make it known….. I am thankful it’s not something worse. But I HATE that the baby I carried for 9 months was growing a brain inside of me that wasn’t developing the way it should. I hate that I carried a baby and while I carried that baby he was developing a “hot spot” for seizures. He was developing whatever was going to create a challenge for life with Autism. I hate that what I envisioned my life to be when I had kids – is everything opposite of what I live now.
Fiends and family, I’m thankful. I really am. I am thankful for so so much. I am thankful my son is not fighting a different battle – but he still has a battle to fight. MY BABY has a battle to fight and I hate it. And, it’s okay for me to not want to hear the “bright side” when I’m personally living the dark side. And just because the “dark side” isn’t as dark as others or as dark as it could be or as dark as you think the definition of dark is – doesn’t mean I don’t feel like the sun hasn’t set.