10 things you may or may not know/ have guessed.

I came across this 7 Things You Don't Know About A Special Needs Parent | Maria Lin the other and thought I'd do my own version. But mine will be condensed mostly due to number one.
#1 I like her number one. I am tired. So very tired.
#2 I worry. About every little thing. And when I try not to overreact and treat a symptom as a normal kid thing, I beat myself up and feel guilty about possibly missing/ignoring something important.
#3 I get so frustrated with doctors and having to defend my concerns that sometimes I really start to think they may be right, I may be crazy. Then Kotah has an episode and instead of validating, it makes me feel worse.
#4 I love monitors and oxygen/I hate monitors and oxygen. Kotah doesn't need them all the time, and I hate the burden they cause during the good times, but if we didn't have them, we'd be in the er a lot more, just to make sure she's ok. Like when her whole face was purple earlier this week..... but her sats were at 97. Or when she coughs and coughs but her sats are still up. I hate having to force the oxygen on her when she needs it. That is the worse for her. She has my sense of nose bubble space required.
#5 I like to tell people everything is going well, mostly because the reality of staying up all night hoping with don't have to rush to the hospital is too hard to deal with. Hearing myself speak how I really feel usually opens the floodgates, that is why I down play everything and seem like I have such a good attitude. Sorry to burst y'alls perception.
#6 I really have no clue how you can help. I get asked that a lot. But seriously, I don't know. I am not sure what I need. We have figured out how to make life work for us, and thinking about how someone can help or what I need usually just reminds me of how hard this can be and opens the flood gates - see previous number.
#7 I really want to hear about your life, about your family, but sometimes I can't even remember how to have a normal conversation. If we are talking, just bring up fun random things. I want to know. I enjoy hearing about anything. I might not ask, but just launch into whatever floats your boat. I will greatly appreciate not having to continuously talk about stuff that you have probably already heard from me before.

#8 This is a little more open then I would like to be.
#9 I love my life and while I wish it was easier, I wouldn't trade any moment of it
#10 When my heart is full, it leaks out my eyes :)