Don't feel like hearing a pity party? Well then come back another day. Because today, it's a pity party here.
I'm having one of those days where I can barely breathe. The fear, it is consuming me. Luca was fussy yesterday and again today. Unlike other parents, I can't just say "oh she's having a fussy day." The fact is, she may just be having a fussy day like any other baby. But then, the fussiness could be a clue that she's on the verge of a metabolic issue. And the constant worry consumes me.
Every move she makes is under a microscope. Did she sleep too much? Did she sleep too little? Was she just staring at that [baby object of some sort] too long? Is she as alert as she normally is? Is she taking too long to console? The questions just play on repeat like a record is stuck.
And then, I hear of a family who has recently lost their 18 day old baby. He had a urea cycle defect and did not make it. My heart aches for them, knowing all too well that that could've been us. And in the same instant, thanking God that Luca is here.
I have tried to find another family who has a child with CPSI. I have found many who have some type of urea cycle defect (hi!!) and it has been incredibly helpful to find others in similar positions. But I haven't had much luck in finding another family with Luca's specific defect. I couldn't understand why until I looked into it more. It's because neonatal onset (in normal words, a baby who presents with symptoms in the first few weeks of birth) of CPSI normally has a very dreary outcome. Babies with CPSI don't normally make it through that initial period. And that, that scares the living shit out of me.
So while I sit and have a pity party of why us, why does Luca have this?, I also sit and think, why? how did she make it through that initial period?
As parents, when our child is hurt or sick, we want to make it better. We give them medicine, cuddle and love them, and within time, all better. But any person that has a child with a life-threatening ongoing illness can't do this. I do everything I can - I set my alarm clock for every single feeding, medicine, etc. so that she is on time to the minute. But at the end of the day, she still might have a metabolic issue. The most common misconception about Luca's condition is that since she's out of the hospital, she's all better. Oh and people say the medicine must make her all better. It's not really like that at all. Yes, L is no longer in a crisis state. But that could change at any hour of the day. The medicine helps, it doesn't cure.
I hate this disorder. I don't wish it on anyone. I hate that my daughter will never have a normal life. I hate that we could do everything in our power, the doctors can do everything in their power, her transplant could happen and the surgery could go beautifully. And at the end of the day, we still might lose her. And that, that fear, suffocates me.