Carpe diem…seize the day…
When Sammy was only a few hours old, he showed signs of seizure activity. As the day continued, so did the seizures.
A prenatal ultrasound revealed to us that Sammy had HPE, and my research on the condition told me that infants and children with HPE are prone to seizures, among many other secondary conditions. Just the word “seizure” scared me, and I prayed fervently that Sammy wouldn’t have them.
After his birth, doctors ordered an MRI of Sammy’s brain, and those scans would reveal that Sammy’s severely malformed cortex made him susceptible to seizures that would be difficult to control with medications. It didn’t take long before we discovered just how difficult it would be.
Sammy began having seizures so soon after birth that I suspect he was probably having seizures while in the womb. Most of the seizures were short in duration, but the frequency of the seizures was disturbing. We would try to count the seizures, but often times, there were just too many to count, and we would lose track of the total.
Sammy had an excellent neurologist who was aggressive in treating the seizures and who was on the same page as we were (not to mention the fact that we were also all on each other’s speed dial). Through Sammy’s life, we tried different medications and multiple medications, but it seemed the seizures just kept coming.
As a parent, it was heartbreaking and distressing to watch our child’s body seize, and there was no way for us to stop it. I remember countless prayers begging God to calm the storms that were overtaking Sammy’s body for sometimes hours on end.
When Sammy was about 6 months old, I received some clarity on the subject. I was by myself in the car and I distinctly remember exactly where I was on the highway; I remember the time of day and the weather conditions in that moment. Although I never found myself questioning God about why Sammy was born with HPE, I did have another “why” question for Him. I remember reasoning with Him and saying, “Lord, I understand why he has the seizures. I understand that his brain didn’t form correctly in the very earliest days of his development, and I understand how his cortex is malformed. I understand why Sammy has seizures, but what I don’t understand, Lord, is why he has to have them. No matter how his brain developed or how the scans look, I know that You have the power and authority to take those seizures away, and I don’t understand why You haven’t.”
Immediately, He answered me. It wasn’t a voice I could hear with my ears, but my spirit heard it loud and clear. He said, “Seizures are a part of who Sammy is, and you must accept them. When he ceases to have seizures, Sammy will cease to exist.” It wasn’t the answer I was expecting or wanted, but God had spoken, and I understood.
From that point on, I still asked Him to calm the storms that wracked Sammy’s brain, and while we still continued to try medications to get better control over Sammy’s seizures for his overall quality of life, I had a different peace about them, and I no longer feared them. I still didn’t like them, but I understood them.
Over time, we would see Sammy go from 100+ seizures on a bad day to maybe only 25-30 seizures on a good day. I often prayed that Sammy would experience the love and presence of God during his seizures…that in those moments, he would know God. Over time, Sammy’s seizures would begin to change, and he typically had partial, focal seizures, not the tonic-clonic (grand mal) type of seizures. In time, he began to have seizures that many people didn’t even realize were seizures. The seizures would present as posturing to one side, rolling his eyes in that same direction, and his mouth would break out into a huge smile–the kind of smile where his eyes would disappear behind his chubby cheeks. Sometimes those big smiles turned into laughter, and I often wondered if in those times he was experiencing the Hand of God reaching down to tickle him.
I have never forgotten the explanation I heard that day in the car, and I often thanked the Lord that He made Sammy’s seizures to be “cute” seizures so that I could endure witnessing them day in and day out.
At the end of Sammy’s life, he developed sepsis and a respiratory illness that made him very sick and unstable. Even the act of changing his diaper or touching him caused him distress and made his vital signs drop. While hospitalized and on a ventilator, he had a very rapid respiration rate and was working too hard to breathe. In order to allow his body to rest for healing, he was prescribed a paralytic medication that essentially paralyzed his body so that he would breathe with the ventilator and save his energy for healing.
The last time I saw his physical body have a seizure was a Sunday morning, and by the next afternoon, we knew that it was time to let him go to the Father. Later as I would reflect back to that day in the car and my conversation with the Lord, it was then when I realized that during the period of time from Sunday morning to Monday evening, we didn’t witness a single seizure for the first time in Sammy’s life.
“Seizures are a part of who Sammy is…When he ceases to have seizures, he will cease to exist.”
Sammy Yammy and HoPE 