This may be an 'out there' answer... but don't change a thing. Parent 'the right' way (meaning go with your gut, parent your way, be the mom to your kids that feels right to you... not necessarily anyone else), and try to let go of the inborn superpower that happens with kids (aka mom-guilt, or dad-guilt... it really is a super power. Leaps tall buildings, can see in the dark, faster than a speeding bullet to knock you down).
I may not always feel this way, BUT, I feel this way right now:
Living like it's your last day, your last time, isn't healthy. It puts waaaaaay too much pressure on a situation and the people inside of it.
For 6mo this year my son was dying. We'd manage to get home from the hospital for a week or two, but then his lungs would start collapsing again, filling with fluid, not responding fast enough to meds, and we'd be right back at the hospital for another few weeks.
I lived in constant fear. With lung problems, you've only got a few minutes. They fail, and they're gone. They're just gone. There's nothing you can do. No dialysis, no time to get on transplant lists, nothing. Minutes. And the first time your kid codes, when their heart stops, part of your soul just gets ripped away from you. I'm choking up even now, and he's sleeping happy and healthy up in his room.
In the back of your head is the constant running thought: My son's going to die. So you don't think of it. You shove it down, and ignore it, and ALMOST live in complete denial, because there is NO WAY you are going to freak them out by being sad or afraid. But the fact of the matter is... the way you live CHANGES when all of a sudden there's a clock running in the background.
You get happier. You don't mind losing sleep, if your kid's awake. You do a LOT of things you would never do (like eat out of vending machines and omelette bars and donuts, and watching TV/playing videogames 24/7, and, and. Rulebook? Tossed. All rules are officially out. the. window. when your kid is that sick. LOTS of misbehavior gets ignored (I mean, really, what are ya gonna do? Take away the remote???), ESPECIALLY when the temper tantrum is that they don't WANT to be poked for the 40th time that week, or that day, or they're TIRED of not being able to go outside, or play, or see their friends, and the medicine makes them throw up. And they want to go home, and you're a mean old mom and they hate you for not letting them. The last thing in the world you want when they might crash is to have the last thing on your lips be something disciplinary. And besides... they feel crappy all the time anyway. Yes. Lets make the possibly last days of your life be harder than they need to be. No. No we shall not.
But you CANNOT live the rest of your life that way. We don't live like we're dying, we live our lives in the present to have good lives now, and great lives in the future. That's WHY we teach balance (not all times are play times, and not all times are work times, and not all times are 'stay awake' times, and not all times are sleep times), and it's WHY we discipline (respect, not hurting others, being strong in yourself, etc.), and WHY we educate, and plan, and follow through... to become better people.
I don't know about you, but I choose not to live as if my son does not have the CHANCE to be a better person. We've been through (knock wood) the worst of it, and are mostly on the other side. We're home. And he goes on timeouts. And he has times where he's bored. And he has to do things he doesn't like. BECAUSE HE GETS TO LIVE, he GETS to do things he doesn't like. I get to take a nap when I have a headache without being afraid he won't be there when I wake up. He gets to learn to be compassionate for other people when he misses out on something (because mommy has a headache).
THESE are the good times. The perfectly normal times. The times where life ISN'T one for the record books. The everyday business of living. In all it's real, and wonderful splendor. I'm not raising my son as if this might be his last day. I'm raising him to be a GOOD man, and to have a GOOD LIFE. Which requires that there be a tomorrow to work for, and plan for, and a today to live. Headaches and boredom and timeouts and "not today, but tomorrow".... because there IS GOING TO BE TOMORROW.
How frickin cool is that?
There's going to be tomorrow.
