I know that you never expected to be the father of a child with a disability. And that you were shocked when you learned that you were one. Whether your child was atypical at birth or became disabled from a sudden trauma your whole life changed in an instant. And continues to change with each new challenge your child presents.
My first reaction to learning that my son had Down syndrome was shock. Denial, anger, shame, and deep disappointment quickly followed. I knew that I couldn’t change my son’s gene structure, but I also couldn’t accept it. I feared he’d be a “retard” all his life. I couldn’t love my child. I didn’t want to deal with his needs. For the first 3 months of my son’s life I essentially “checked out.” My wife says I was not much fun to be around during those first three months.
Fortunately for me, my wife, my son, and everyone around me I had an encounter with a wise professor who opened me up to consider that even with all the limitations that Down syndrome might impose my son would grow, and could develop and accomplish in his life. When I opened to that possibility, I was able to imagine that I might even feel joy in being my son’s father.
There are stages of acceptance that parents go through. Rita Eichenstein in her book, Not What I Expected, outlines 5 feeling stages parents go through:
3. Bargaining/seeking control/seeking solutions
There is a pathway for every father to accept what is and build a purposeful life filled with joy. I describe my journey to acceptance in my book, Chosen Fathers: Life Lessons Learned from Fathers of Children with Disabilities. (You can see the book here/) [CF click button] But your journey will be very different.
It is hard work to get to acceptance. I am not talking acceptance where you say: “okay, this is it; there isn’t much I can do about it and not much I can expect of it.” The acceptance I seek is one that encourages doing everything possible to build my child; an acceptance that builds me; an acceptance that makes me proud of every accomplishment my child makes no matter how small, and every accomplishment I make. After 26 years of raising my son I am still challenged. I must continually renew my commitment to actively accept who my son is and who I am. But it’s worth it.
I can go on and on about how proud I am of my son; of all that he can do; of all the joy I have because my son is a fine young man. And I could go on and on about how I have developed as I strive to accept what I never expected and never wanted.
I can’t urge you strongly enough to jump on the path. Make the decision to accept unconditionally what is. Read Dr. Eichenstein’s book. Work with your spouse. Call me. I will guide you onto the path.
Don’t miss out on being the father you are meant to be.