Leading the Blind

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...

Last Friday, I was driving to my next destination on a usual day of errands when my phone rang. I'd already dropped Christian off at therapy with his nurse, ran to kroger to pick up half of what I needed since they were out of the other half, and planned when and where I would go to the next Kroger to get the rest of my groceries. I picked Christian up from therapy and headed to yet another grocery store with the specific things I needed for Christian' s diet. My mind and body were exhausted. It WAS Friday after all and it had been a long week. Chris had found out earlier in the week that he lost a large bonus at work that we were counting on, the boys had been battling a nagging cold all week, not sleeping well. We were all just over it.  I answered my phone and it was Christian's nursing company on the other end. To my surprise, they had just received news that Christian's insurance had decided that he didn't need all of the nursing hours that he had, the ...

I have been a mother for almost 6 years now, and one thing motherhood has taught me is that raising kids is full of highs so high you think it can't get any better, and lows that make you feel like you're scrapping the bottom. And sometimes all those highs and lows can come at once.  One of the hardest things so far about raising Christian has been the fact that he is beginning to desire independ ence from me, but independence doesn't come so easy with a child who is blind. Don't get me wrong, that's part of it. If we raise kids well, then they won't need us one day, right? As hard as that is, it's just part of it. And as mothers, our hearts break and rejoice all at once as our children gain independence and come into their own. But with Christian it's different. He is at the normal stage in his development where he desires independence. He asks to do things himself with his sweet little words, "Want Christian to do it." He lets go of my hand a...