I have never been one to run from a fight or retreat with my tail between my legs. My nature for good or bad has always been to stand firm in what I believe in, and to stay the course even when my tears betray me, or my knees want to buckle. Never has my resolve been so steadfast as since Maclain was born. It is still incredible to me when I look at how many times I have had to engage in many unwanted and often times unwarranted struggles to get my son the things that he needs or has a right to have. People who know me, know that I am up for any challenge that comes my way, but for the record, I really don’t like to fight for no reason. The truth is that it is exhausting. Mentally, emotionally, and physically it takes it toll. Each situation has different players, with their own agendas and personalities, and just as prepared to go the distance as I am. And more often than not, these are professionals in their fields who have letters behind their name, organizations backing them, and a network of peers who they can rely on for support. It can be intimidating to be up against a system when the system is not designed to meet the needs of a child with special needs. Despite their insistence that they are in fact fully capable of meeting your childs needs. And their claims of seeing it from our side are completely not true. How can you see anything from my side, when you have actually never been on my side? Literally or figuratively. When I lay awake at night, which is often the case, and I replay the events of the day, or week, or month as they pertain to the latest battle that I am facing, sometimes a little voice in my head tells me things that make me second guess myself. When things are particularly hard, and it is a situation that I see no immediate solution in sight, and where I feel to the point of absolute defeat because nothing is going as planned, I jump to thoughts of whether or not I should even be battling? Why can’t I just accept things as they are? Why can’t I just listen to the experts and take their word for it? Am I asking too much? Am I being unreasonable, or unrealistic in my expectations? Am I looking for a fight, where one doesn’t exist, because of some feeling in the pit of my gut? Why do I have to push and push and push to the point of no return with school, and doctors, and treatment centres and insurance companies? It is worth the toll that it takes on my mental state, family relationships, marriage?
Then the other voice pipes up
He has the equipment that he needs because you fought for it
He has cochlear implants because you fought for them
He is getting a power wheelchair because you fought for it
He has assistive technology because you fought for it
He is getting help finally for his GI issues because you fought for answers
And the list will grow as he grows and things will never just be easy, because life isn’t always easy.
But he will get what he needs because you will fight for it. Because he is your son, and you are his Mom. And you must never forget it, and you must never apologize for it.
“Even if I have to stand alone, I will not be afraid to stand alone. I’m going to fight for you. I’m going to fight for what’s right. I’m going to fight to hold people accountable” Barbara Boxer