The Disability is Not the Hardest Part

This week as I made 100 phone calls trying to figure out where I could take Hailey for glasses through our insurance and who actually carried the two brands (Miraflex and Specs4Us/Erin's World) that I wanted to try for her face shape and uniqueness (lack of a nasal bridge and low set ears).  We have supplemental insurance for Hailey to help cover what our private insurance doesn't cover, but that was useless because there was no location that took our insurance, the supplemental insurance and had the glasses we needed.  Sigh....

So Thursday I packed Hailey a lunch to eat in the car, she is always starving after school.  We headed from her school to the eye center to pick out glasses...praying that she would behave since we were missing nap time. We spend about 15 minutes trying on glasses and taking pics (I didn't want to choose them on my own so I had to text a few :-)  I got them narrowed down to one size and we sit down to complete the paperwork and measurements.  That's when the lady looked at me and said, "I'm sorry, we don't take your insurance".  Bigger sigh....  I mention that I verified with our insurance company a few days ago and again this morning before leaving.  She just shook her head and said sorry.  I told her I would be right back.  Hailey and I headed to the car so I could call the insurance company.  Before I called them, I cried.  I think it was just the straw that broke the camels back.  I was tired...I'm worried about the battle that her glasses will be...and I had spent so much time researching where to get her glasses.  We spend 20 minutes in the car.  Hailey playing with her "doggie" and me talking and waiting on hold with the insurance company.  They finally get it resolved and we go in to finish the order.  We pick them up next week.  I'm sure that will be another blog post in itself..."Places we have found Hailey's glasses" or the "Strange ways she's using her glasses". 

Through the process this week, I came to a realization...most of the times, it is not Hailey's disability that causes anguish or pain...it's the processes and red tape that we have to work through.  It happens early on.  Fighting with insurance companies for therapies that will improve her quality of life or tests that should be considered preventative medicine.  It's the mound of paperwork that you fill out for everything.  I haven't had the issue at school yet, but I know that some parents deal with a ton of issues there as well.  It's the "oh, we can't proceed because you didn't submit form x, y and z".  It's tiring...it's emotionally draining.  I truly believe that is the hardest part of Hailey having a disability.  It is trying to do what is best for my daughter to make her life better and the roadblocks that we encounter.

In true Hailey fashion, we were at the end of her order and she says something to me.  I have no clue what it was, it was super fast and super high pitched.  I looked at her and asked what language she was speaking.  She started giggling and cackling and covering her mouth.  She repeated the exact same phrase three or four more times just so I could give her a funny look.  Every time, she followed it with that giggle that makes people stop what they are doing, look at her and laugh.  That infectious giggle that I love so much.  Just like that, all is right in the world again!

Here are a few looks we checked out while we were at the doctor's office....

She refused to go into the office without her "doggie".

I promised if she would good she would get a cookie.

The clerk at Kroger thought she was super cute and gave her 2 cookies!

This is what happens when you go to school, eat lunch in the car, are super good picking out glasses and at the grocery store and you miss naptime.....