And the verdict is...

I realize that I totally forgot to write about our recent court experience. For those that don't know, we've been fighting the system to get Lily on disability and hopefully social security income. We first started the process at UNC when the diagnosis, the fear, and the unknown was fresh in our hearts. The nurses pleaded with us that we should fight the good fight, "They will deny you at first. It's just what they do. Keep fighting.. Lily has a long road ahead of her with a lot of medical bills that will come and go. You need this." So we filed. And we were denied. 

And so the real fight began. We were frustrated with Lily's diagnosis and still processing the changes in our lives so I can't recall if we appealed then. I know that when we got our act together we filed again, and again we were denied. They seemed to base their decision on the fact that she was not considered blind. I wanted to pull my hair out! I was not filing because of her eye sight, I was filing because she had no pituitary gland! The eye sight was just a sideline factor for us. Our biggest concern was, and is, her lack of pituitary gland, the medications, the doctors, the worry and fear of an adrenal crash and the constant monitoring and changing of medications. I wanted to drill this into their heads but all they could see was words on a paper, not a face or a voice from a mother. 

So, we appealed. And were denied.

So we appealed again. And were denied again.

At this point we were more mad than anything. All this time wasted. Time wasted going through hospital forms, calling doctors, asking doctors to write reports for me, hours of filling out government paperwork and heartbreaking trips down memory lane. It was at this time that we sought out a lawyer. That, in and of itself, was another hurdle, but a lawyer finally got back to us and said she would take our case. She assured us that they only take cases they think are valid. 

And so, more paperwork, and lots and lots of more waiting. In fact, we waited a whole year just to get a court date. It was so intimidating to me. I, who have never gotten a speeding ticket or had to even pass by a court room before, was now going to have to face a judge and plead the case of my heart and soul, my daughter. 

Even after getting the date, we waited. And finally it was upon us. Dennis, Lily Belle and I walked into the SSI building - just a regular building, no major courtroom or anything like you'd think of from TV. We finally met our lawyer and chatted with her. She had prepped me the day before and I felt confident that, of all things, I could discuss my daughter and her condition. 

I'll skip the minor details and go to the hearing. It was, again, intimidating! The judge was a woman, which immediately put me at ease. She met Lily and spoke to her for a few moments and then asked Dennis to come get her. I was left alone to speak for my family. The judge opened up her questioning to me with this bomb, "I have a note here from Lily's endocrinologist that says she is doing quite well with her medication. Why do you think she should be considered disabled?" I could feel my face heat up. Who was I to refute the doctor!? 

And then I mustered up my mom-courage, looked the judge in the eye and told her the truth, that Lily's condition is not black and white, that it is constantly changing, needing close monitoring by me, and that things aren't always "quite well" though overall I guess if you looked at her, you could say that to sum her up. 

The judge asked a few questions and then the lawyer guided me through some questions we had discussed the day before. We talked about her sensory problems, the medicine routine and sleeping/DI problems. I felt like almost everything was covered in a very short amount of time. And then it was over. 

So again, we waited.

And this week we got the letter from the judge and much to our surprise, she granted a "fully favorable decision!" It was what we needed! And before you ask what this means, we're still unsure (laughable, right!?) We are expecting another letter that explains our "benefits" in a few weeks. At this point we don't even know what to hope for - anything would help us! And the letter came on Monday, my defeated day, a day that we had gone through 5 pull ups in one night (do you know how much big kid pull ups cost!?) 

For those wondering, Lily was found "marked" in 2 categories, which is what we needed. Her first was easy to determine with her medical disabilities: "Marked limitation in health and physical well-being." The second was the one we were fighting for "moving about and manipulating objects" referring to her weak upper body, weaker hands, hard time writing, stringing beads, buttoning and unbuttoning, getting around unfamiliar environments etc. 

This judge definitely seemed to really listen  to me. She even added "I give great weight to the mother's opinions." and explained why the previous medical consultants' assessments were not given much thought with her decision, because they did not "adequately consider the combined effect of the impairments." 

We are relived. We are thankful. And we are hopeful again. We hope that all this hard work paid off and that something good will come from this. In the meantime, it does feel nice to have someone listen to me and acknowledge that this was a good fight worth sticking around for.