On faith intersecting with watching your child suffer

One of the things that has been bothering me since Eli got sick is the lack of scripture pertaining to watching your child suffer (and death being a possible scenario). I hear a lot from Christians about taking joy in suffering. Paul (of the bible. Author of a lot if the New Testament) talked a lot about having joy in all circumstances, taking joy in suffering, suffering for his faith, guaranteeing trouble in this life, and on and on. But people that talk about joy in all circumstances (including Paul), I don't think watched their child suffer from a life threatening illness. Or laid in a hospital bed, holding their child's listless body while a team of people wheeled the bed to the PICU while others were administering drugs on the way. There's not a lot of joy there. Mostly fear.
To me there are two applicable stories in the bible about losing a child. The first is where Jesus heals Jairus' daughter. Jairus sought out Jesus because his daughter was so sick, near death, and he appeared to think Jesus was his only hope at that point. By the time Jesus gets to Jairus' house, the girl is dead. But Jesus says she's not dead, she's sleeping. He tells her to get up and she does. It's a miracle. I'll get to the second story about losing a child in a minute.
My issue with the story of Jairus is that there's no guarantee that if I just ask Jesus to heal my son, he'll do it. And I know this because I'm not the only parent with a sick kid who could die. There are TONS of parents begging Jesus to heal their child and let them live (here. On earth. Not heal them in death or in heaven, but nice argument.). I know some of these parents. They are some of the best people I know. However, it's not my favorite club to be in. And let me just say that I cannot believe or trust a God who would perform a miracle because someone believed enough, had enough faith. My faith IS shaky right now. But I don't think that's why God hasn't swooped down and miraculously healed Eli yet. (And if I do lose my son and you think it's because I didn't believe or trust enough, please come to my house so I can personally punch you. No, I mean it.)
Here's what I mused about today. God gives us gifts with an open hand. When we hold those gifts with an open hand both us and others are blessed by it. It's not diminished. When your kid gets a life threatening diagnosis the knee jerk reaction is to grasp more tightly, more desperately to them, so as not to let them go (as if you have any control). But what if I am to hold my children, as a gift, with an open hand? Will that change the outcome here on Earth? Nah, I doubt it. It might change me. (Not that I particularly want to change, I really just want Eli to be healthy again and life to go back to normal. Regardless of what happens, healed in life or healed in death, I don't think I get to go back to "normal". Dammitsomuch.)
Okay, so here's the other part of scripture about losing a child, connected through an experience of mine. I have a friend who lost her teenage daughter very suddenly a couple years ago. It was even more terrible and heartbreaking for my friend than you are thinking. At some point in the months following her daughter's death, I remember praying and weeping and begging God to relieve some of my friend's complete and total shattered heart. I remember telling God that it wasn't okay and no one should have to feel what my friend was feeling. That I could hardly breathe thinking about it, and I wasn't the one who had lost a child. That it was too much, and who was He anyway? And you can doubt me or dismiss me, but in my weeping and begging God told me He lost his son, too. He knows what it's like to lose a child because he lost his son, too. (Even in my shaky faith that's kind of a profound statement that still causes me to step back. So take it in for a minute.)...........Sure, in the last few months I've questioned God on that because he knew from the beginning what was going to happen, and his son DID ascend to be with him....but I can't argue too much with the fact that God did watch his son suffer and die.
So where does that leave me? I don't know, man. I'm not going to stop praying for my son to be healed (miraculously, or through medicine, or miraculously through medicine), even if I'm unsure about the receiver of my prayers. Maybe I could try holding him slightly less desperately in my heart with more of an open hand for receiving and giving....although that sounds like a joke because have you met any mothers? We specialize in desperate love. And "Here Lord, I trust you enough to take my son if that is your will" makes me ragey and want to puke.
So I have no way to tie this all up with a bow, nor do I really care. It's just some of the better thoughts I've had in the last few days. Go forth and kiss your loved ones.

"I just can't imagine"

One thing Jerry and I hear a lot from other people regarding having a kid with a life-threatening illness is, "I just can't imagine!" It's okay, it's not offensive. Perhaps it's a bit distancing, but I get why people say it. I probably would have said it too, six months ago. 

Except I think it's a lie. I think people tell us they "just can't imagine" because they actually CAN imagine just a tiny bit and it is utterly horrifying and terror-inducing. Yes, it is those things as well when it is real life and not just an imagining. But what can we do? We wake up every day to fight the good fight. It is exhausting, but it's what any parent would do. Which is why so many people just can't imagine. They know they'd go to the ends of themselves and the ends of the earth for their kid. But they maybe don't know what those places look and feel like. I've been there. I kinda live there right now. It's survivable. You could do it, too, if you had to. I hope you don't.