All night I have been torn over whether to write or not to write. I can’t sleep – I am restless. The new year has not been the greatest so far and I’m only 3 days in.
3 days into the year and we are already battling with the Epilepsy Monster again. We left around 5:30 this afternoon to take a boat to a friend who asked us to bring it. It was something we needed to get done and I wanted it out of the way so our weekend would be free.
Fast forward to 10:30 when my phone rang. My sweet Emma was frantic on the other end. “Mommy come home! Jackson’s having a seizure.” My heart stopped. Dadwas dead asleep beside me. He had fallen asleep while we were watching a movie at the friends. He hopped off the couch so fast, he almost fell across the friend’s child laying in the floor. We hadn’t even dropped the boat off the back-end of our Tahoe.
I ran out the door but had to go back because I left my coat and it’s freezing outside. All I could think is how far away I was from my sweet Jack. I called my Mom back – she had hung up not long before. She had told me he was struggling to breath and I could hear his other Grandma in the background. They were wondering about a rash that was breaking on him – it was the blood vessels showing from his seizure.
It wasn’t long we were on the road – that was by far the longest drive in a long time, even though I know we were passing the speed limit. It’s an hour to my friends house from mine – an hour back to mine. I called to check on the baby again when we were halfway home. She said he was doing better – calming down and tired.
We stopped for gas – it seemed like forever but we finally made it home. Jack was asleep and looking normal thankfully. His white hair shining in the light of his Grandma’s lamp while he slept on her chest.
Laycie was still awake laying beside him and I could tell she was scared. Jackson seizures are a reminder of her own. It terrifies our entire family when they happen.
Winston was well-passed out in the other bedroom while Emma was still pacing the floor wide awake. My strong, brave girl. I cannot even begin to fathom the strength that lies within that child. She suffered these same type of seizures for years and now she watches as her sister and brother do the same. She’s the first to grab the phone and call me. She lets me know detail by detail of what’s going on. She doesn’t exaggerate, she simply tells what’s happening. She’s also the first to grab the Diastat and have it ready to go – ready to save her baby brother or her sister’s life.
Even though it scares her, she keeps her cool. “I hate to see him suffering”, she tells me, “I hate to see him seize. He’s just a baby.” She is so right – I’ve hated to see this happen to her, her sister and her brother for the past 10 and a half years.
It scares me. I admit that. I was never scared of this until Jackson came. I never lived in fear with it but this, this uncontrollable Epilepsy he has is the worst yet. Just when you think you have it handled, you realize it’s far from it. FAR from it. I long for the easy days I had when Emma was fighting this battle and pray to God to take away this devil we fight with every day now.
I hear people say every day who live with this disorder that we are in the same boat – we all fight the same fight. I used to say that very thing and be the most positive person when it came to Epilepsy. I have fought this fight for 34 years and now I have three beautiful children who are fighting it. I can say that no we are not in the same boat. We each have our own battle to fight with Epilepsy.
My boat is not your boat and I cannot understand what your child suffers – you cannot begin to understand what my life with 3 is like, except for following it on this blog and even then it will be a challenge for you. You have no idea how terrified I am that one day my baby girl won’t wake up or one day my baby boy’s breathing won’t return because of his seizures, because of his Epilepsy. You simply have no clue.
I don’t even pretend to understand anymore what each of my friends’ children who live with this and so many other disorders go through. I simply stop and I pray when I hear something is going on. That is all that I can do – and look at my own babies, thanking God that it is not them this time.
That’s the cold-hard truth.
I love all my friends and their precious children and I wish more than anything that none of them had to ever suffer again but I don’t know what their personal battle is and I cannot fight that battle for them. We are each on our own with this Monster, fighting this battle even though we may pray together for it to stop.
I will never stop advocating for Epilepsy. I will never again sugarcoat this life we live – this IS what living with Epilepsy is like. You can like that or not – this is the truth of it.
It’s not a kind disorder – it’s hard and it’s cold and it doesn’t care what age you are or what life you have to live. It just is and it consumes everything – it takes over and it’s not controllable and just when you think it is, it strikes you down to remind you that we are NOT in control of it.
And in the end, all you can be is just thankful to God that you have been blessed to live.
To read more posts from me about living with Epilepsy, please visit our Epilepsy Awareness section of the blog!