Sometimes I want to sit down and I want to ask people if they understand?
Do they get the finances? Do they get the medical bills? I mean do they understand that on top of all the things that we have like the house and car and all that there are bills for each ER visit and each surgery and each hospital stay. There are bills for the equipment that he has to have and so we have to get it. There is the money for each co-pay and for gas (driving at least 23 miles one way) and for parking. I hate having to decide if we can do this or that because we have been to so many doctors appointments there isn’t money for anything else. I hate telling Aden that we can’t go to the playground because Zach will overheat. I hate telling Aden that we can’t go to Monkey Joes (or fill in the blank) cause Zach is sick or the money just isn’t there this week.
Do they get that waiting sucks? I mean we are 6 weeks out on waiting for tests and we still have no idea, some people have waited over a year on these tests. Waiting is so hard, you don’t know when you will hear but you want to know if finally you will know the name of whatever it is that is causing your baby pain. You want to be able to tell people yes, he has ______? I want to know that I am doing all that I can do, I mean how do you know that you are doing all that you can if you don’t know what you are dealing with. We are always waiting… waiting to see if meds work, waiting for the doc to call, waiting for results, etc. Waiting sucks