Leading the Blind

                            I can't think of any better life motto for Christian than this. Christian can't be like the rest of the world even if he tries. Everywhere Christian goes, he stands out. He is different. That is just a fact. No need to dance around it. He is marching to the beat of his own drum in life. And I couldn't be happier about it. Christian and others like him are changing the dialogue about disability and life BECAUSE they are different and because they are not like everyone else. What's so great about being just like everyone else anyways? And what is so wrong with not being like everyone else? Who even gets to decide where the range  of "normal" looks like? I heard a line in an episode of Supernatural once (years ago, before kids, when I actually got to watch TV sometimes). Dean Winchester said "Most people live and die without ever moving more than the dirt it takes to bury t...

When someone doesn't have personal experience with sensory issues, when neither them nor someone they are intimately antiquated with have sensory issues, I can only imagine what that looks like from the outside looking in. A few things that I often wonder if people see when they see my kids struggling with sensory issues include "What a brat!" "If that was my kid I would.....X, Y, Z." "Why doesn't she just spank that kid and make him stop acting like that." "If she would just X, Y, Z, then her kid wouldn't have these issues." That's not an exhaustive list.  In my on going effort to make the world more knowledgeable about disabilities and to promote the acceptance and integration of people with disabilities fully and wholly into our society, I want to talk about what sensory issues really are, and what they really mean to the people who have them and the people who love people who have them. I hope this post s...

There has been a lot of heated debate lately on my social media accounts about children with special needs. What could anyone possibly find to debate about them, you wonder? Their value and worth. Oy! Shocking as it is, it's the truth. I have heard it all of Christian's life. The argument is always  that parents who carry children with disabilities to term and allow them to live are selfish. The premise of that argument is that people with disabilities are better off dead than disabled, that having a disability means they are suffering, and that they are a burden on society anyways, financially and otherwise. I just wanted to take a few minutes to debunk this way of thinking once and for all. First, let's address the selfish parents thing. Parents of special needs children are literally the most selfless people I know. I don't say that because I am one but because I am a personal witness to it. I say it because I know the amount of sacrifice I have personally had ...

Chandler, my child. My wild one. My all-boy, car loving, star wars obsessed, sweet, three-year-old. You have spent your entire life living in the shadow of Christian's disability. It's all you've ever known. You have slept on hospital couches, ridden literally thousands upon thousands of miles to make Christian's appointments, and spent most of your time as second string to Christian's internet popularity. You have sacrificed so much to be so young. You have given up a "typical" childhood. You have given up days spent with "just the three of us" as nurses come in and out of our home all week to care for Christian. You don't act like the "baby" of the family, probably because you don't get to be the baby. You have had to grow up so fast. Your brother has needed you. I have needed you. To be more independent. To help out. To carry your share and,, it literally hurts me to write this, but part of Christian's share, too. ...

Photo Credit To Lacey Orchid Photography I received the appeal packet for Christian's nursing appeal today, have read through all 200 pages and I am feeling defeated before this appeal hearing even happens. Not because Christian doesn't qualify or need the nursing hours, but because the way the rules are written, they make it nearly impossible to overcome. He not only qualifies, if Christian doesn't qualify, you would be hard pressed to find many children who did. Tenncare is riddled with injustice and unfair practises in their appeals process and decisions of care. The appeals process is set up to work in favor of the insurance company. It would be a miracle or luck for me to win this appeal, let alone someone who isn't an attorney. The basis on which they decide care is so intertwined with literal word vomit that no rationally thinking person could have come up with it, and no average, low income family trying to understand their rights could ever possibly...

Christian and his nurse, Carolyn at school. Shared with permission Some of you guys have been keeping up with the issues we've been having with her insurance trying to cut our private duty nursing hours and I wanted to discuss a little about our nurses. Some of you might be wondering what exactly private duty nursing even is. Everybody's familiar with nurses, but some people aren't aware that there are situations where a nurse can work in a person's home to help care for that person. The reasons that a person may need a nurse in home are expansive, but the value that an in home, private duty nurse adds to a patient's life is consistently invaluable and backed up by research. Although I don't need a medical journal to tell me so, science and medicine prove that not only is it more cost effective to have a private duty nurse in the home for certain patients who need that type of care, it is also better for the overall health of the patient and will preven...

It's been six years since we welcomed my sweet Christian Taylor into this world. It was such an exciting and terrifying time. I remember walking out the front door of my house that morning I was to deliver, and thinking how different my life would be the next time I walked through that door. Having a child is such a huge life changing event anyways, but I really had no idea just what was to come. We walked into the hospital that morning and went through all the routine things, paperwork, getting the IV hooked up, and all that. The usual nerves were of course, already set in, but there was certainly an unspoken element of fear in the room about what was to come. The unknown can be scary at times. My parents showed up a little later before time for the C-Section, and we all stayed in the pre-op room. We really did talk casually and joke around. We were all scared, but still were calm enough to just spend time together. Honestly, we all knew that freaking out or sobbing or g...