I get so frustrated when I hear the doctors, nurses, and many others say, "She can do anything she wants and can do things just like any other kids!!!" To be honest it makes me mad, sick, and just plain angry! Because it's a lie and I would like to do a play back of bits and pieces of our every day life and see how they explain their statement then.
Yes, she looks normal, but there's so much more to it than just looking healthy or normal!
Here's a recent example:
If Nevaeh can do just like any other kid I guess the other day we should have been able to go to the waterpark worry free! Instead, we had to decide how to handle the situation and prepare the day before since she is only suppose to suspend her pump for 1 hour! What!?! Yes, one hour. So I could have said ok Nevaeh have a blast for 1 hour and then we have to leave but I didn't because I want her to have fun and be normal. So instead I give her less insulin before we go in knowing she could go low because I've seen her do it before with alot of physical activity. Then at lunch I have to go out to the car. Get her pump. Reattach it. Check her blood sugar. Yes, she's high. Give correction. Does this sound normal to you? Then we get up to the food stand to order and I have Nevaeh on my hip and she is holding her pump in her hand in a water proof bag because she's still wet and what happens.......the tube gets hung on her arm and she rips the site off accidentally!!! I have no choice at this point but to tell the staff to hold my order (I've already paid), go home, get her an insulin injection because there's no use in putting on a new site if we are getting back in the water. When we get back to the park we have time to eat with twenty minutes to spare for her to swim before we have to leave for good. And I have highly educated people tell me she can do things like any normal kid!
There are many examples I could tell from only 8 months of experience with this disease! Here's a few short examples:
Several nights Nevaeh has asked me am I going to be ok? What if I go low in the night? How will you know? Is this normal?
Me pulling over because Nevaeh fell asleep in the car but I don't know what her blood sugar is and need to check it? Normal?
Nevaeh saying she's low on the way to somewhere we have to go. We pull over, check, give her what she needs to bring it up and then get to our destination late. Normal?
Snacks at 3am to bring a low up. Normal?
Checking to see if your 5 year old is breathing during the night? Normal?
And the list could go on.....
Please don't take this wrong....I believe we should have a positive outlook overall but be realistic as well!
Thank you for letting me vent a little it is well overdue. :)