By Barbara Knighton, Guest Blogger, 4bknighton@gmail.com

Our world is different from yours. We walk among you and try to participate, but it takes so much more on our part. Our struggles are daily. Our grief is cyclical and sometimes feels never-ending. Our pain runs deep, and we are forced to face a future of uncertainty and worry. The stress can be overwhelming at times. But just when it seems like you can’t go on, a moment of joy happens, and you find some peace.

I have always said I will do as much as I can for as long as I can because the day I stop, so does the protection for my son. I don’t get days off. I don’t get to put my son’s disabilities on the back burner and put my needs first because there are too many battles to fight, too many lessons to learn, and too much advocating to do. I have found my tribes and my allies. I have reinvented myself countless times along this journey. Sometimes I wonder how many times I’ll have to start over, how long I’ll have to keep making sacrifices, and when I’ll get my life back. I know, deep down, the answer is never. Things will never go back to the way they were, and I will never be the person that I used to be. Life has changed me, but for the better. My son has made me more tolerant, more forgiving, and more confident.

Over the years, I have learned how to cope with my situation and use it to my advantage. I have made a career out of taking care of him, getting the support and assistance he needs, and advocating for changes where they need to be made. I am very good at what I do. I was recently told that if I don’t do this, who will? Sometimes I feel like I’m the only one who speaks up, who advocates for change, who cares, but I know there are others in the same situation who feel the same way. I am proud to be a voice for them and for everyone who struggles to find their voice. I have found mine and am not afraid to use it.

When you look back on your life, you wonder why things happened the way they did. My experience on the debate team in junior high is really paying off. Writing for the school newspaper in high school and working on the yearbook staff have been put to good use. I have contributed to several newsletters, publications, blogs, annual reports, and even a few yearbooks. However, I still have not found a good use for Algebra. Working for several very demanding bosses in a corporate environment who expected perfection consistently has taught me to read every line, check every document, and be extremely organized. Participating in leadership programs in high school and earning my Girl Scout Silver Award in leadership has laid the foundation for me to be the community leader I am today. I strive to learn from others, be part of my community, give back, and make the world a better place in some small way. I hope that my advocating and helping others has made this bumpy road a little smoother for someone else.

Having a child with disabilities is not a blessing, but it has its silver linings. I do what I do because I must. I do what I do because it is right and just. My son deserves a good quality of life. This unexpected path has forced me to make choices and do things that no parent should ever have to do for their child. It has strengthened my marriage because we either do this together or apart. Apart is not an option.

Like any good parent, I’m doing my best to set my son up for a successful future. He has an outstanding educational team at the Texas School for the Blind and Visually Impaired (TSBVI). They have not only improved my son’s life and outcome, but have also helped me to grow as a leader, provided me with advocacy opportunities, and taught me how to work with my son at his level. For me, his graduation next year will be bittersweet. We will be losing this support and much-needed respite. After graduation, my son won’t go off to college, get married, move out, or become independent. He will return to me, and I will go back to work full time. I’m never able to fully switch off when he’s home. I remain in a constant state of alertness. Always waiting for the other shoe to drop, always preparing for the next battle, and always ready to come to his aid. I will return to the car rider lane. Dropping him off daily at a day program so he can have a meaningful and purposeful life.

While I have his immediate future mapped out, the remainder of his life is extremely difficult. Finding a place for him, a community free of abuse and neglect. Free for him to live a safe, joyous life. The cost is astronomical. The stress is overwhelming. Due to the immediate loss of my career at the time of his birth, my once prosperous income was gone. Never to be reclaimed. I must rely on a waitlist 15-20 years long for services that may or may not be funded when they become available to me. It is hard to plan for his future with so much uncertainty. Yet I go on. Trying to remain positive that it will all work out. I am a person who makes things happen. Always making a square peg fit into a round hole, but his future planning is so complicated with so many moving pieces and so few options to choose from.

So, this is where I am—looking back at my life, learning from my mistakes, continuing to overcome a deck stacked against me. Moving forward by swimming upstream. As my son transitions at each stage of his life, so do I. Meeting new allies, building new communities, creating new experiences, gaining more knowledge, and finding new family. It truly takes a village, one that gives you what you need when you need it most. One that understands you and one that you create by sheer willpower. I know I will find his place, his family, his future home. Still, in the meantime, we will continue down this path, learning, growing, and adapting to this ever-changing world, hoping that the uncertainties will lessen and the future will become clearer.

Barbara Knighton, 4bknighton@gmail.com