As mentioned in my welcome message, I decided to officially start blogging. This is something that I should have done long ago. My first post is pretty long, but I needed to write it. Here goes…
For nearly the past three years, I have watched and listened to people who are heartless and just generally mean-natured individuals. And as my daughter Morgan Ashleigh says, I usually sit there and take it, always turning the other cheek. Mostly, this was because I have not ever done anything to incite such negative behavior. However, my father taught me from a young age that everything others inflicted did not deserve my attention because someone else wanted to pick. Well, I continued to turn the cheek, until now.
People, when others progress in life, be proud of them and genuinely so. Do not smile and praise them in person or in public but then go behind closed doors to deliver behind-the-back personal attacks. People talk about your actions. Likewise, when others move on and away from their once-familiar circles, allow them the freedom to do so. Some of you have done the very same thing and cared less of what society thought. Not everyone wants to remain in the same territory where they have lived their entire lives.
For some, staying on familiar ground produces debt and oppression. For some, doing so introduces unwarranted discriminatory encounters. For others, doing so leads to incarceration or even death. For many, doing so produces resentment because they gave up dreams based on what their families thought. Whatever people decide to do with their own lives, especially when it is for their betterment, it is their freedom to choose. Let them be them, and you just move around. I cannot tell you how many personal attacks I have experienced in just the past four months alone. Jealousy has no friend except bad karma.
Now, this part is the kicker and the one that has broken the camel’s back. My sweet, innocent daughter Lirit had her first day of the new school just this past Monday. I was sitting at work when my husband called so Lirit could talk to me. “Mama, someone wrote a note and put it on my desk today. It said ‘You’re fat.'” I was floored! I quickly asked what happened. Lirit said that a boy had placed the note on her desk, and the girl who sits in front of her took the note to the teacher, telling the teacher that it was not right. Apparently, the teacher was appalled and told the little boy that if he did anything like this again, he would have detention for the rest of the year.
PAUSE…yes, that actually happened. I think we are sandwiched between a few older Tuberous Sclerosis families and several younger ones with whom we remain in contact. Therefore, I am not sure of the experiences that other families have had, but this is so inappropriate. And it is only one negative experience we have had over the past few years. We fight for our children 24 hours per day, seldom getting the rest we need just to ensure that they are treated fairly.
Do our TSC children sometimes get into trouble? Yes, they do because their ability to think is much different than children in so-called “normal” society. Can most of our TSC children defend themselves against others who are yelling at them or threatening them? No, they cannot. Are most of our TSC children adept at solving problems, having the ability to rationalize about various life situations? No, they are not. And that is why I am such an advocate, not just for our children, but for all children who have visible and invisible disabilities.
What I want is for every parent to teach their children, the ones they tend to place on high pedestals who are “normal” in those parents’ eyes, to respect others for their individual differences. Wait, maybe they cannot teach because they, too, believe that they are better than anyone else. See, this is why America is in its current state. We have the utmost disrespect for each other and for those with differences. I did not choose for my daughter to be born with one of the most extremely rare genetic conditions known to scientists. She most certainly did not choose to have a tumor that resulted in continuous high brain pressures, hydrocephalus, and two strokes (to name a few things), yielding multiple disabilities.
So what, if I have to remind her to fix her shirt? So what, if I have to remind her to remove the extra pillow so that her head is not in a bind? So what, if I have to remind her not to sleep with her glasses under her pillow? So what, if I have to remind her to tie her shoes? So what, if I have to remind her the proper way to maker her bed? So what??? These are things that she will forever experience in her life, regardless of how long she is on this earth. People with disabilities need the love and support of their families and the community as a whole, but some people will never get that because they choose to remain ignorant.
In any event, I am happy that God chose me to be Lirit’s mother. When I see all of the bad things children are going through from physical abuse resulting in death to molestation and death to child sex trafficking, I could never imagine placing her into the hands of a halfway heartless person, even for a few hours. She is my responsibility and when God gave me to her, He knew that it was for the long haul. When she was born, she was perfect. When she started doing things that everyone wanted to punish her for, she was perfect.
When she was lying in the hospital bed, worried about what was happening in her life and thinking that she was dying and going to heaven with her PawPaw Preacher and Roshundalyn Legacy, she was perfect. When she flat-lined for hours during surgery and had to receive over 40 bags of blood and blood by-products to bring her back to life, she was still perfect. When she developed speech, occupational and physical issues, resulting in what appears to be life-long therapy, she became even more perfect. Even in all of her society-labeled imperfections, my daughter is one of the most incredible, loving and perfect individuals I have ever encountered.
To attack me is one thing. To attack an innocent child or belittle a child is an entirely different game, and especially, when it is one of my children. When people talk badly about Lirit, all she wants to do is to love them and be their friend. I finally had to tell her that not everyone will understand who she is and why she is the way that God designed her. I also told her that not everyone will like her and will talk about her, and you know what? That broke her heart. My response? “Lirit, it is okay if not everyone likes you or says bad things about you. Always remember that those people never deserved to be your friend anyway. You will always have me and I will always love you.” And she nodded with a huge smile. She knows that I am and always will be her greatest advocate.