I had a bad day today.
My son, Kai, had a seizure. Actually, it was a small series of them. This was our second time with this experience and this time was worse than last time.
Last time, he zoned out and stared at the ceiling and then eventually passed out. This time he vomited. I thought it was due to a bad combo of foods so didn’t worry about it and put him in the bath. When he stepped out of the tub, he zoned out and pitched head first toward the wall. I caught him before his head made contact and helped him up while his body started to vibrate. His eyes looked vacant and his pupils grew steadily larger. I helped him to the bedroom, where his dad and I laid him on the bed. He came around briefly and then started up again. We quickly got him dressed, into the truck and to the hospital.
Kai has eight diagnoses. One of them is PVL (periventricular leukomalacia), which is damaged white brain matter. It is rare and often misdiagnosed as autism (which is another of his diagnoses). PVL is linked to cerebral palsy, which Kai doesn’t have, and to seizures, which he didn’t have until a couple of months ago. The hospital initially thought his first seizure was due to a quickly spiking fever, but I think that they are wrong. We have an appointment in the next couple of weeks, on my birthday (the first available date), with the neurologist and I anticipate that we will discover through an EEG that this will be ongoing. I don’t know this for certain but its what my gut is telling me.
This sucks.
EIGHT diagnoses. And just when I feel like I have a handle on everything, there is ALWAYS a curve ball thrown at me. I often say that if God doesn’t give you more than you can handle, God must think awfully high of me.
I try to always remain positive when it comes to Kai and living the special needs life. And I will be OK. So will Kai. But, right this second, I am…
I have no words.
This gig, 24/7/365, is rough. If I told you it wasn’t, that you wouldn’t have moments like this, where you felt like the weight on your heart is unbearably heavy, I would be misleading you.
But, this is what you, and I, need to remember. This moment is not forever. This feeling is not forever. I feel it. I feel it hard. It hurts. It’s bad.
These little earthquakes can rock you to your foundation.
But, eventually, the shaking stops. The situation may force you to relearn your special needs life. To learn your new normal, YET AGAIN.
Remember when you did that before? You did it, didn’t you? So if you did it, you can do it again. And again. We sure as heck don’t want to, but ultimately, we need to keep our eyes on the prize.
My Kai is a sweet, sweet prize.
I had a bad day today. But this is still the greatest job in the world.
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