But after having Liam my circle of involvement and social groups have either fallen to a bare minimum or fallen away entirely. People have disappeared from my life. Friends I used to have dinner with are gone. It's unfortunate to lose important supportive friendship ties. My social interaction is now with therapists, teachers, and Facebook. And the once well-visited social circles are a construct that is now very foreign to me.
I have had to reconcile to myself the fact that this life is not my own. I always knew it wasn't. But it's a very hard thing to do when you have the illusion of control for so many years and then it becomes certain that you never had it to begin with. It isn't something that I have done grudgingly. On the contrary. While I very much miss the life I used to have; the freedoms, the money, the friends... I have found a joy in places that most people will never know; watching my multiply-disabled son smile when I enter the room (even though he doesn't really see), rejoicing over every little step he makes in his progress (each micro step is a giant leap for him), and the love his brother and sisters share with him as he delights in their attention (their view of people with disabilities has broadened their hearts and minds).
It has not been easy these last 3 years. It just hasn't. I struggle with how best I am to be a light in a dark world when I feel like my own world is very dark. I am in a transition phase with my faith that has taught me that even though I can step away from God, he has not walked away from me. I am at a crossroads where I do not know how to be the best me I can be. My old self is so familiar and the skin I wore so comfortable. And I have been put in a place where I do not know the new me very well at all. On any given day my emotions run full tilt in opposing directions. I am faced with situations that I don't want to be in. I imagine it is a lot like how Moses felt. He was put in a position that he did not feel comfortable with and did not feel capable of doing. He argued with God about whether he had picked the right person for the job. And I most certainly feel the same way. I think it everyday. And I sit, day after day, wondering how my light will shine when my social construct has been destroyed. I am unable to go into all the world.
Why put me in a position where I have no visual sphere of impact void of my family?
The internet has surely helped lesson the isolation families such as mine have experienced. I am saddened when I think of all the families that came before the dawn of texting, email, Facebook, and twitter. Even in my isolation I know that I have it better than the families before. I am able to reach out to other moms online who have children with special needs. And not just children with cp. I can relate to any mom with a child with special needs because I can empathize with them. What every parent experiences is the same range of emotions. Anger. Denial. Frustration. Grief.
I remind myself that my job is not to worry about where I go, who I see or who sees me. My job is not to worry about the money, the needs, or the wants. My job is to trust that I am where I am supposed to be. And that God will use me if and when he sees fit. How do I be a light when I am stuck at home? How do I go into the world and show the gospel? I don't know yet. But I do know that I have met more people online through Liam's journey than I ever thought possible. God had taken us to places I never would have been with out having a special needs child. Not just physically but emotionally as well. Although my social circles have shrank to a bare minimum, who knows how and in what way I can be used.
* You don't have to disappear from the lives of a family with a special needs child. See what way you can help. Even if it's just coming over for an afternoon tea. They still need social interaction. Empathize, realize that they have a new normal, be a shoulder to lean on. Ask questions. Educate yourself. But most of all, don't just disappear.