There are many times I blog or write to help me remember where I am physically and mentally in challenging times. It always helps me when looking back to give myself credit for being resilient and strong when in the heavy moments I don’t feel I am.
So, My current state: shock. Absolute shock. It’s all relative though, right?
I mean, after all, I was in shock with my son’s diagnosis of Autism. Now I look at that diagnosis and realize I should have just been thankful it wasn’t something more.
By the grace of God, I pray that one day I won’t look back at this blog and say “I should have been thankful then because it wasn’t something more” – because right now – very little feels worse. Even though I know there is. But, this is my baby.
This morning started off early. Ben was up and atem’ by 5:40. In a good mood, we came downstairs and did our normal Routine – pop tart at the bar (don’t judge, he had milk too). Then, Ben then hit his elbow on the counter. He fussed more than usual which we thought was weird because he is so tough but this time asked for a boo-boo bunny. He was just hyper-sensitive. Within seconds I noticed his face became “empty” and from a high knee position on a barstool that sits feet above the ground, I literally watched from the other side of the counter my son fall completely sideways and slam his head on the way down and not cry, not move, not make a noise. Andrew immediately grabbed him and he was rigid and wouldn’t move. His eyes rolled in the back of his head and moved side to side. Andrew yelled “I think he’s having a seizure” as Ben lost
Control of his bladder in his arms. It lasted seconds but felt like an eternity. As I sat on the ground holding Ben, Andrew ran to get a phone and I looked over at Jackson who was watching the whole thing and knew we needed to keep it together. We sprung into action making emergency calls, getting the kids out the door, getting neighbors and family over and within 25 minutes were out the door in route to the hospital. The 25 minutes which Ben should have been on the bus on his way to school.
I can not describe the fear. I’ve seen countless seizures. Never from my baby. I had no blow by O2, no pulse ox, no warning, no diagnosis. I had my baby and no ability to change it.
Ben underwent several tests today. One of them – confirmed abnormalities in Ben’s brain and aided in his new diagnosis. A form of Epilepsy.
With Epilepsy there is a wide range of “stuff”. So much to swallow. We were told today it appears he has the type that he may outgrow, that won’t cause damage to his brain. We
Were told that his kind may happen while he sleeps or early morning. We were told that it could be all day though – we just have to wait and see. In that though, we were also told that he may have seizures once a day, once a month, never again – we just don’t know. Wait and see.
We have another apt Tuesday, to help us make more decisions but in the meanwhile – we are processing this.
We are processing the fact that we can’t leave him alone for a minute. We are processing feelings of not wanting him to leave us to go to school or ride the bus. Processing that any minute he may have another seizure – and will he fall, bite himself, hurt himself?
I’m terrified. I hate it. I hate all of it. I’m pissed. I’m pissed that it’s always one thing after another. I’m angry that I feel sorry for myself when it has nothing to do with me. I’m mad that a part of me wishes this was someone else’s kid, not mine. Not my baby.
So, tonight, I process. I get through. I give in and let him have anything he wants and let him get away with just a few more things. To be honest – that may be my weekend.
But – soon enough, I take charge. I talk to doctors, figure out a game plan, talk to teachers and my other kids. Figure out what I need to do to get through this new normal and not allow the fear of what could happen – control me.
Today is tough. Epilepsy is tough. Bens tougher.
Hi Kristen. I just wanted to reach out to you after hearing your story regarding your sweet baby and having a seizure. I have been EXACTLY where you are……..diagnosis of ASD and a subsequent seizure and diagnosis of epilepsy. I completely resonated with everything you’ve said above, EVERYTHING. His first seizure was 5 years ago. I just felt completely compelled to reach out to you as a Mom who gets it and if you need to just talk or ask questions, please know I’m here! I found from the beginning of our journey with both ASD and epilepsy that the best source of information and education was talking with other Mom’s who had gone through it or were dealing with it. And the comfort I felt from not being alone in said journey from people who actually get it was priceless. Epilepsy is so very scary and unless your child and family deal with it, there is simply no explaining it. You can find me on CBD Oil For Kids page. Best of luck and many prayers for you all. Maria Albright Miller
Thank you so much for reaching out. I obviously haven’t checked these messages much but so so much has happened this summer. It is 100% overwhelming and I am thankful for people like you who help soften blows by sharing your kindness.
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