It’s hard to be a parent to a child at any time but when that child has seizures you begin to look at life differently. Each moment becomes special. Every breath means something. It’s a hard thing to understand when you haven’t experienced it.
Being a Mother is special. Being a Mother of a child who has Epilepsy is even more so. We are blessed each day. We don’t know what our tomorrow holds, if we will even be able to hold our little one, if it will be the last breath they take.
A little over a year ago, a dear friend of mine lost her daughter in a car accident. Her baby. I can’t imagine. Yet, I can.
I’ve held that same fear. I’ve wondered if this was my last chance to hold my child. I’ve wondered just how long the seizure will last, if it would stop and is my baby okay.
From my second child to my fourth, I’ve spent every day asking how to do this every day. To see your child lifeless, breathing stopped, body out of control in a convulsion is something you can never forget.
I can still see my Emmalee’s face when I close my eyes, the motions of her body and feeling her small self in my embrace as I held her and talked her through her seizures. I remember the day I went shopping and had her crash into my arms at Walmart. For the longest time, we didn’t go shopping unless we had to.
I can see my Laycie, arms above her head as they did X-rays to make sure she was okay in a wooden device that looked like torture to me. I can see her laying in a crib with uncontrolled convulsions, wondering if she’d be okay, if God was going to take her away from me that day. 9 gran mals and 23 petit mals before I lost count. Surely, her little body would give out before it all stopped.
I see my Jackson, who I prayed would be like his big brother and not have this, laying in my arms as the seizure took him over, his face much like Emmalee’s. His breathing stopped and I would wonder how much more of this he could take before it took him from me.
I’m thankful that my babies are here each day, that God blesses me with another day to love them. I cling to them because of these things. I will never let go, even when I have to.
Unless you have lived it, it is hard to understand, to know what it’s like to be a Mother of a child who has Epilepsy. It’s hard to know what it is to hold a child who has seizures, to wonder what your morning will bring or if you’re child will make it through the night as you lie down to close your eyes. Many nights I stay awake and watch them sleep, just thankful for a lack of twitches and jerks as they rest. I’ve spent the last 15 years of my life doing this.
I know I am rambling at this point. It’s been so long since I’ve written about our life with Epilepsy. I have so much to say, so much left unsaid.
Until next time…