I have red hair and feckles. I am 30 years old. I have a college education. I am a wife, a mother, a daughter, a sister. And I am a mother who's child almost died.
Yesterday, somebody very close to me called because her daughter had just had a seizure and she needed advice. And she sounded so scared and I felt so far away. I've mentioned on occassion here how we almost lost Samantha, but I've never gone into detail. At least not here. And as we're approaching the 5 year anniversary of that, maybe I will. But that is for another day.
I haven't brought it up much here because in a lot of ways, I feel like a broken record. It feels like it comes up in the most random of conversations and I don't want to be that mom that is all "yeah, my child almost died." But guess what? I
am that mom who's child almost died. For better or worse, it is a part of me. A part I wish wasn't there, but a part none the less. I know there are people who feel we should be over it by now, but the thing I've realized is that you never get over it. Life does get back to some sense of normalcy, you are able to sleep again, you are able to let your child of out of your sight. But then there are those times, like when they spike a fever for no reason, or they zone out just a little too long, or you can't get them to wake up to take their temperature when they are running a fever, where you are instantly brought back to that place. That place in time where you almost lost your child.
This person close to me, who experienced something similar the other day was by herself with her two girls when it happened. I was lucky in a way because I had people there with me who could help when I panicked (and I did) and who will always understand why I can't get over it. A sounding board for those days where fear strikes me. Who understand why I still cry everytime I talk about it. And who won't judge me because I'm not moving on as fast as some think I should. If she needs it, I hope I can be that person for her. Because
I do get it.
Today, I was researching information online for her because she desperately wants answers and right now there aren't any. And I remember (and she's smart enough to know) how scary doing internet research can be. I figure I can be her filter. So today, I looked up what Samantha was finally diagnosed with, which was status epilepticus, which basically means a seizure that lasts longer than 30 minutes. Samantha's lasted well over 2 hours before they were medically able to stop it. But while reading, I came across this:
Status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes [1], or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes (or shorter with medical intervention). There is some evidence that 5 minutes is sufficient to damage neurons and that seizures are unlikely to self-terminate by that time. First aid guidelines for seizures state that an ambulance should be called for seizures lasting longer than 5 minutes.[2] The mortality rate of status epilepticus is very high especially if treatment is not intiated quickly.[3](
courtesy of wikipedia)I knew we had been close to losing her, but I didn't know this. Even almost 5 years later, I didn't know this. And it brought to my knees again, so thankful for everybody around that day. To my stepmother who knew just by the look on my face and the tone in my voice when I said "help me" that she needed to call 911. To my brother-in-law who insisted she be brought to the better hospital even though it was further away because we didn't live around there and knew nothing about the hospitals. To the ER doctor, who later admitted she didn't know if it was a seizure and took her best guess. To my dad, and my sisters and my grandmother who held our hands and let us cry, who assured us she'd be fine, who sat in the emergency room, away from us with very little news, but who we knew were there fighting for our little girl on the worst night of our lives.
I went on to read the following
About one in five, a total of 42,000 annually in the United States, will die within 30 days of having an initial status epilepticus seizure.I didn't know this either. And it's better I didn't. We were barely getting any sleep as it was, so this would have completely done us in. And it proves to me that we do have a miracle living with us in our newly 6 year old daughter. She beat the odds, when they didn't think she would.
But I do know, and I guess I always did, that I had/have reason to be scared. Her seizure wasn't common, it was serious and it
was life-threatening. I am not exaggerating when I say that. I am not lying when I say we came minutes from losing her (per the ER director, btw, not my estimate). That whether fair or not, when people told me about how their neighbor's cousin's son had one and he was fine, it was ok for me to be angry (although never at the person because I do understand they were only trying to help) and to explain "this was different." Because it was.
And so, I will continue to talk about it because it's a part of who I am. And I will continue to be amazed by the young lady she is becoming and I will always be remember how lucky we are to still have her here with us. But there is a part of me that will always be a mother who's child almost died.
Martin Eric Nelson
