It is a known fact that parenting is hard work, but the work becomes more challenging when you are raising a child with special needs. The reality is that most of the time it isn’t even raising the actually child that presents issues, but rather fighting through all the red tape to get every ounce of amenities that your child deserves. My special needs parent friends get it. It is like matching up David with Goliath.
It is exhausting. Exhausting to be told no. Exhausting to advocate for their rights. Exhausting to live in a world where we turn a corner only to be faced with yet another wall. Truly, I am not having a pity party. My party is seasoned with a multitude of victories that have accumulated over a mountain of defeats. It is the reality that being the mother of Bailey gave me. I am a fighter. I am a believer that what is rightfully due to my son should be, without hesitation, be given to him.
I don’t belabor the point with my friends that aren’t experienced in the area because I don’t want to overwhelm them with things that they don’t understand, nor do I want to become a chronic complainer. Instead, I rely on people that do get it, feel my pain and can bathe in my triumphs.
Please don’t confuse these words with thoughts of regrets or sadness. I am grateful for the opportunity to be Bailey’s mom. These bumps in the road have given me tools to navigate this uncharted territory, along with teaching me about my inner strength. No longer am I limited by society’s perception of what is best for Bailey, but instead, I am empowered by the notion that even the smallest steps forward are creating a movement that will, hopefully, break down some barriers. In the meantime, I will buckle up and continue to enjoy the ride.
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