This is an example of my instinct preparing me for the future. I wrote this a few months ago to a friend, but it turned out to be exactly what I needed to get through this time. Funny how things work that way.
Dr.'s and nurses are not your friends. Never get too comfortable with them, but treat them with respect..always greet them with the dr in their name, and even through in a few sirs or maams, and bring them greens from your garden, or a fresh baked bread (even if you just buy it) Make them like you, make them care, but never let your "like" for a physician stop you for a minute from trusting your instincts. Always, always speak up if you don't feel something is right, no matter how small it may seem. Change doctors, ask for new nurse....do whatever needs to be done, but do it with kindness and class. You know your child, you know her body, you know, and she knows what is right for you two.
Don't let anyone else tell you how to feel, or what to do. If people give you advice, take it if you want and leave it if you don't. Bad life sitations bring out really good in some of your friends and relatives, and really bad in others. Start now learning how to laugh about how stupid people can be, so when they eventually make hurtful comments, you can laugh about it, instead of cry. It's a long road just with the doctors and the decisions, don't let people watching the situation get you down.
Ask for help when you need it. Just do it. They only reason I am successful is I ask people to do things all the time. I create things because I'm not afraid to ask for anything, it's my most powerful skill, and it's not hard, it doesn't make you weak.. it makes you stronger. If your house is a mess and you can't get it done. Ask someone to do it for you. You don't need to be cleaning when you could be sitting in bed with your kiddo doing crosswords. If you need someone to bring over meals, ask... people want to help. They want to give their time, they just don't know what to do, they have all this emotional energy and it can be used for good or evil, use it in your favor. It's a gift to the giver sometimes to ask for help. Just remember that some people will offer, and will not come through. Don't let it get you down, just file it away and don't ask that person again. If people make you feel bad, just don't talk to them for a while. Like I said, some people are really good with the bad, and others really good with the good. It's only us of higher focus that actually try to be good all the time. They are still your friends, it is just something they are incapable of... it's not that they don't love you.
Laugh, be silly... ..make a fool of yourself, if it puts a smile on your child's face, its the perfect thing to do. Once you get inventive, its fun to see what you can find in the drawers of a hospital room. I've created sculptures, figuring out what else you could use that impliment for is a good one... Do extra things, like post a note on reddit/r/cards and ask people from all around the country to write a note about their first kiss (make sure you have a po box), or when you see someone performing in the hospital in the kids wing, ask them to come to her room and do her favorite song. Play people watching games, as you will be spending a lot of time waiting. You can play things like "mistress or daughter" or "mail order bride" or first person you see with glasses on their face and their head, or whole family's wearing crocs... or count the number of times that a teenager flicks her hair with her hand... strange things to keep your mind off things... it can be a lot of fun. Find a card game you really like and play for silly bets... like who has to go to the nurse station and ask for strange items or speak only gibberish to the volunteer at the front... whatever you can do to laugh.. laugh.. laugh...
Spread kindness, like wildfire. If you see someone who needs a hand, give it (so long as it doesn't overburden you). Don't hesitate, don't get lost in your own issues. Help others, it will make you feel fantastic, better than anything else does. And it will make asking for help when you need it, so much easier in your head.
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