WHY Advocating for your Chronically Ill Child – with school and caregivers – is CRUCIAL to their livelihood

I am a mother of a chronically ill child. My daughter is 16 years old, and has been living with Lupus since she was diagnosed at the age of 5. Having Lupus is not the end of the world. But, your do need to prepare the rest of the world on how to interact/what to expect of your child if they have a chronic illness that may affect their interactions, abilities, access, and quality of a school education or level of care. WHY is advocating for your chronically ill child to the school and caregivers so crucial? It can make the difference between "bearable" and "natural." For children, and they TRULY want is love, acceptance, and understanding. They don't want to be "different." Advocating, in this sense, means to make things easily understood so that it is readily accepted and natural. As a parent, you can't let the disease define your child. YOU must define the disease, and let YOUR child shine through.   Once your child can shine through, it is easy to get and give love, … [Read more...]

And that’s how you NINJA kick Lupus in the ass and take back your life…

PERSPECTIVE - some times you've got it in spades, and some times, it's so easy to loose. And some times, it hits you at the most profound moments in life - moments that make you just want to cry for the shear simplicity of it all. And that's what this blog post is about. If you're looking for something funny today, come back tomorrow. This one will hit you right in the heart - in that place between love and heartache....if you stick through this entire post, I promise you, it DOES have a good ending. So, my daughter has Lupus. It's really hard for me to say it out loud, as at times, I feel if I say it out loud, I am giving it more life than it deserves. But, it's a fact, and the worse part of it is, I'm not the one dealing with LUPUS. My daughter is. My sweet little bundle of hope and joy. My baby! She's 16 now, and she's been living with it pretty much her entire life. She was diagnosed with it at age 5. Lupus is one of those chronic diseases that can take away your ability to … [Read more...]

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