smartignani

So my son is sick again. He is turning 3 in two weeks. He is prone to febrile seizures.

The last time he had an episode was hours before he turned 2 then he had mini-seizures in his sleep. Like two more times. Now he caught a virus from daycare which would normally set other children back 24 hours. Fever and vomiting. For him, having a seizure is a constant threat hanging low over his head. At least for me. His father is stronger than I am.

I am fighting my own demons.

I am constantly watching his monitor. Even at night. It’s a sick obsession. 

I have joined support groups on Facebook that are made up of parents who are struggling with febrile seizures attacking their babies. When I first joined, I read about the sad story of a 3-year-old who was taken from this life by a seizure. It was debilitating. The story and the mother and her advocacy and trying to understand was beyond hopeless. My anxiety increased when I read that story and I started researching even more. There is no known cure nor prevention of febrile seizures. It seems the medical community has just accepted it as a “common event” for children and they “will grow out of it by the age of 5 or 6”.

What?! I can’t sleep out of fear and incapacitating anxiety for 5 or 6 years????

As a mother of a baby who suffers from seizures, I have to confess, there is nothing worse than seeing it happen. The pronounced  shakes, the foaming at the little mouth, the whole-body stiffness, the exhaustion afterwards and he does not even know what is happening. I read other parent’s encounters on Facebook and I write them comments to support them but it’s not good enough. I went to therapy and I paint, knit and even write songs but it’s not therapeutic enough.

We need more research about this. We need to give parents better ways to cope with this. I was told in the Emergency Room by the doctor who finally got around to seeing my son, 5 hours after his seizure- that even Tylenol and Advil and controlling his temperature will not stop a seizure.

So what will?

I wanted to let you know that my son is sick. It’s not a visible illness and it’s not chronic and so many parents tell me to be thankful that it’s not leukemia or a disease that is terminal. Yes. I am grateful. Yes I realize that this may or may not kill him. I know that seizures, on the broad spectrum of what can go wrong are fairly and legitimately unconcerning but…

I STILL HATE THEM!

I hate them every time they occur. Every single second that my son’s body is out of his own control with his eyes rolled up. Every time that he is not “conscious”. I hate their powerful hold over him and over me. I hate how scared I am and how tired he looks afterwards. I hate the fact that he has to get them. I hate not knowing when and how he will get them. I hate not being told that they can be deadly. I simply hate it all.

Despite the fact that they may outgrow the seizures, we will never forget the misery, the worry and the pain of seeing our child this way. Febrile seizures are killing our insides a little bit at a time. There is numbness on the edges of my heart.

I still pray but inside me I am filled with rage and frustration.

I question why certain children get it. Why others don’t? There has to be some research done on precursors- a gene, a chromosome, a virus, a predisposition, something.

There has to be an answer. This is incredibly hard. I can’t explain nor describe the sickening feeling of dread and tight knots in my belly as I watch him on the monitor tonight. It’s like waiting, and knowing, that something really bad will happen.

It’s being ready with clothes on in case you need to go to hospital or call 911. It’s having a packed hospital bag hanging off your stairs banister near the door. It’s having more than 10 bottles of Children’s Tylenol and Advil and Motrin everywhere. It’s the constant, gnawing, persistent and ever-slow tapping on your nerves.  It’s the fervent prayer in the night as you sleep with one eye open while the other watches and counts every rise and fall of the chest. It’s my palm on his chest to check his heartbeat. My heartbeat. We are one and we are connected. I don’t know if I can do this.

If you are reading this and you know how it feels, please know you are not alone. It may be common but that doesn’t make it easier. It may be minor but that doesn’t make it any simpler for us to digest or comprehend. It may be transient or temporary but it is no less traumatizing.

I am left with PTSD as a result of his seizures. I am always anxious and scared to be away from him. I hate the fever/seizure watch with a passion.

I am but a former shadow of myself. I used to be brave and so strong. Now, I am fearful that I will lose one of the sweetest gifts God ever granted me.

Please keep me in your thoughts. And keep him in your thoughts as well.