The last few weeks in dealing with Daniel’s health, the insurance company, and stress at work have literally pushed me against a wall….and I’ve come out with both fists flinging, flailing and fighting for dear life. Just when I really thought we beginning to turn a corner in his health, it all came crashing down with him too exhausted to get out of bed for two days in a row. My first thought was, “oh crap, here we go again”. Not a pretty thought,,,but I’m not sugar coating anything anymore. So, we’ve spent the last two days trying to analyze what he’s eaten, what he’s done and how did this happen.
In some ways, it makes me even more determined to find out what else is really going on and what do we need to do to make him better. So, I’ll be making phone calls to the Cleveland Clinic to find out what we need to do next. We’re going to another specialist at MCV on Monday. I’m not backing down or letting go until my son is completely well.
We received a letter from our insurance company yesterday indicating they were reviewing our appeal and it could be up to 30 days before a decision is made. I’ve got news for them…this stubborn redhead will not back down until they pay for medical services. I pay my hefty premiums and followed all protocol, they ought to be ashamed to deny services to a child. By the time I finish this appeal, they might even have to pay for my flight to Cleveland.
There’s a part of me that is so tired of fighting, so exhausted from all the red tape, so frustrated from recurring circumstances, but then I see Daniel trying so hard to do everything the doctors have told him. I see him measuring out his supplements every morning and trying to eat dairy free foods. I see him trying so hard to keep up with homework when he feels so lousy,,,and I know I can NOT back down. This battle is not about me…it’s about him to get better. I have to be his advocate, his behind the scenes caretaker, his chef of new foods and the one who stills tucks in his blanket around his 6 foot frame when he’s sleeping. I have to be the appointment maker, the one who intervenes on his behalf for school, the mom who buys supplies at Walmart at 9:00 pm when he needs it for a project. I have to keep on keeping on and not back down, not even for a fleeting moment. I may cry tears of frustration and exhaustion, I may get really mad, and I might even think “WHY?” at times…but I will never back down.