The Battle Between Why and How

My parents are doing all they can to ensure that their granddaughter can visit them in dusty ole Amarillo and for Christmas they asked us kids for an air purifier. I am so touched that they are going out of their way to ensure Sloan gets to come play in Amarillo from time to time. This is a huge deal to me as I never want to forget where I came from and always want our kids to feel at home with their grandparents.

Their gift request prompted me to start my much dreaded research for the best of the best purifier, air filters, vacuums.. etc. to ensure that our home is not acting as a catalyst to her condition. We knew the medical equipment was outrageous but I was totally caught off guard by the prices for the purifiers. I was thinking for a really good one we would be spending no more than 400 dollars for the main one and maybe 150 for a smaller one for her room and ours…. WRONG!. We are looking at a grand for each unit and the downstairs would take two and we would have one in each bedroom. Additionally, the best vacuum retails at 1500 (scientist took it up to space to collect some particles for the same reason that we need it for our home. It lets no particles escape) but the guy I am talking to will sell it at 1200 to me. The air filters are 125 a piece. UGH. I am not complaining. There is not a cost out there that we wouldn’t pay to ensure Sloan has every opportunity to have as normal a childhood as possible but geez!!

Before forking out 4K on air purifiers I decided to check and see if insurance would cover them. The call started off well, we have a great insurance company (as great as one can be anyways) and the lady was more than happy to talk with me and answer my vague questions. She told me that purifiers, in general, are not covered but if I got the HCPCS code from the Dr. along with the medical necessity note they might be able to get them covered. This was encouraging.

As the conversation continued though, the thought that I keep suppressed was rising. I kept trying to push it back down because I won’t allow CF to take the joy of having this baby away from me. But it kept coming “WHY” “why are we having to go through this” “why is our daughter to carry this burden” I HATE IT!! I REALLY HATE IT!! I HATE that we did everything right and it is SO out of our control. It was the best I could do to end the call with the insurance lady as fast as I could but it was too late. They Why’s won this round and I was left feeling defeated.

Becoming a parent to any kid is stressful, life changing, and scary but I don’t even know what those emotions are like because our senses have elevated 100 times. How are we going to take care of this child, and worse, how are we not going to feel responsible when she does get sick? How are we going to trust anybody to be around our precious little girl? I am petrified of EVERYTHING. I have found myself NOT washing my hands and thinking “I better enjoy it while I can” because my hands will be raw between the anti bacterial gel and hand washings..

Today the Why’s and How’s won and that is ok because this is a long battle and my daughter is a warrior and we will stand strong against this horrible disease and do the best we can (I want to punch CF in the face, it makes me so mad!!!!) My spirit is not broken, just needs to be recharged. Tomorrow will be better J