Wednesday, November 2, 2016

How It All Began

Our Rhett was a perfectly healthy, aDORable, meeting all his milestones when the seizures began at eight months we were stunned.....and entertaining denial.  There couldn't be something wrong with our sweet baby. Every parent's fear.

How did the seizures begin? What did they look like?

Baby Rhett, "Bup" as Warner named him, had just woke from a nap. As I went to pick him up, his head was handing to the right and down and he didn't respond when I spoke to him. That was the beginning.

After two more of these episodes over the next two weeks, I knew something was very wrong. I was scared to even tell anyone. Can you imagine that? Witnessing something that is just not right with your babe, but being scared to voice these fears as then they are REAL. Was I simply a new (ish) mom over reacting? Was I exaggerating what I was seeing?

It wasn't until a month later, that anyone else witnessed these episodes other than me. First my mom. We were folding laundry together and Rhett was standing, holding onto the laundry basket. He wasn't walking or fully standing on his own yet. Suddenly his head dropped, his right hand let go of the basket and he wouldn't respond to my mom's voice.

 "Rhett. Rhett. Margo, what's he doing?" said my mom with alarm in her voice. For the record, my mom basically never shows alarm. Seriously. Rarely ever. So just the fact that she saw what I saw and that it scared her terrified me. Even all these years later, as I write this, my eyes tear because hind sight is 100%, and my mom's concern reiterates how obvious and scary those seizures were.

That was the beginning.

Soon, my husband witnessed a seizure.

Now my fears are shared and we act. An appointment is made with our family doctor. Of course, it takes two weeks to see her. In the mean time, the "episodes" are increasing in frequency. They have escalated from once every two weeks, to weekly, to hourly. The evening of the hourly incident we are dining at a friends. They see our baby drop his head onto my shoulder, his right arm stiffen, and the inability to respond when we talk to him. It is hard to share this with others. It is scary. Sad. Unknown. That night we forget about our upcoming doctor's appointment and head to the emergency department at our local Children's Hospital in stead. This is too much. This cannot wait another day let alone week.

Rhett and I spend hours there. Undergoing questions and questions and questions. Finally a psych staff member witnesses a seizure too and sees this is not in my head, he is not seeking attention (seriously, I was asked that), this is not about my marriage or finances or abuse, this is a beautiful baby boy having seizures.

I clearly remember driving home early the next morning, with a sleeping Rhett in his car seat, all bundled up in an ambulatory EEG, talking on the phone to my dear friend MJ, teary that our sweet Rhett has Epilepsy and we don't know why.

This is the beginning of Rhett's seizure story.

Tuesday, November 1, 2016

November Epilepsy Awareness Month

November is Epilepsy Awareness month. 

This year I will be posting and blogging Rhett's story. Although Rhett's seizures are quite controlled through meds and a past neurosurgery, it's important to share what he has been through, how far he has come and how the seizures affect him even though they are not visible to your eye. An observer may not notice Rhett's seizures and they are not of the "grand mal" (old term)...generalized tonic clonic type, yet they are still important, they still cause changes and damage. My decision to share is a reminder to everyone including myself how amazing Rhett is and that Epilepsy affects people, always. We all can handle a little more compassion and awareness towards our friends living with seizures. 

So, join us for a month of celebration (yes, we have much to celebrate!), education and remembering all we've been through.