Time

Where does my time go? Well, as a parent, time just seems to evaporate. As a parent of a kid with medical needs, a LOT of time goes into therapy, doctors appointments and the general category of, it just takes longer to get anything done. The one that drives me nuts though, is the amount of time on the phone and doing paperwork for insurance. Don't get me wrong, I am thrilled that we have insurance. I do not know how we would pay for all things AJ without it, but it never ceases to amaze me the long process it takes to get things covered by the insurance. The amount of time on hold, the number of times they suggest to call ________. Sure, I will just pick up the phone, call the doctor, or business office, or lab or.... and get back to you in 2 minutes. Never mind the fact that whatever answer I get will not be the complete answer you need so it will have to be re done!

Today, I gave up on the idea of using the phone. We need genetic testing completed. Now, it is ordered by a Dr. 2 hours away, the blood will be drawn at our local hospital and sent to Greenwood Genetics. Sound simple? It took a trip to the business office to get confirmed that the hospital accepts our insurance, sent next to the lab, who sent us to registration. Registration needed paperwork from the lab so they had to go find it. I chose to wait, in person, not on a phone call.... In the end, I needed things precertified which was another phone call (and 10 miles) and fax away that they said they would handle. Do I trust them? Well, I will do my best to get through this afternoon... either way, we are doing the testing in the morning so that Wed. we can leave for the study in FL. It may end up costing us, but we have just decided the study is worth it.

Ugg. Okay, so that rant is over for now.

On another note, I have to say that now we are far enough into this journey to be able to look back. (just about 2 years since diagnosis) It is a wonderful view. When I look back I don't see the frustrating phone calls and paperwork, just the slow steady progress of one little Ayden Jane. The emerging of her personality. The accomplishments we were not sure would happen. The courageous little one that has worked hard with an amazing little independent spirit. The landscape of Drs. and therapists don't look so medical. They have become trusted friends who share in the beautiful story of AJ. Our perspective on many things has changed and the passing of time has in some ways been a blessing. The short look back was so overshadowed by the huge challenges of year one. The longer view now, is much prettier.