How Many Steps Does It Take To Get To The Heart Of Acceptance?
Thankfully for the many challenges that we face in life there are steps one can take to reach acceptance, recovery or even peace. There are 12 steps for overcoming addiction, 7 stages of overcoming grief, and even a road map to coming to terms with your divorce. But has anyone ever counted the steps it takes to get to the point of truly accepting your child’s disability? In my own research I have yet to see it really ever clearly spelled out. There are poems about it, like “Welcome to Holland” written by Emily Perl Kingsley or encouraging words of wisdom I read in a book called Changed by a Childwritten by Barbara Gill. This book discusses how your experiences with your special needs child will enrich your life for the better; however, no one talks about how long the whole process takes.
Shortly after I learned of my daughter’s disability I met a remarkable woman who shared a phrase that has resonated with me since then. She said that what I am experiencing and will likely be experiencing for the rest of my life is called “Chronic Grief”. It sounded horrible at first. To think that I would be grieving for the rest of my life sounded insane at the time. But if you think of the term in the literal sense then you would likely find it debilitating. However as you begin to live your life as a parent of a special needs child it actually fits perfectly and in some ways brings you a sense of relief. In a nutshell, it is ok to feel and mourn the loss of what you thought your child’s future was going to look like. It doesn’t mean you love them any less.
Naturally upon first learning of your child’s special needs you do grieve and you painfully and slowly pass through all of the stages of grief. The people around you support you while you go through these stages and encourage you that you will be able to put it behind you soon. The length of that process varies for each individual. We all tend to weave in and out of each of the stages at our own pace and eventually get to the end where for a short time we think we are now able to accept.
The glitch or the piece that is missing to this recovery process is that at the end your child still has their disability. It has not gone away. Although for a while you feel like you have mastered the art of what Emily Perl Kingsley writes about in her poem, which is that you are actually happy and quite content in Holland instead of Italy. The reality for some is that you still want to go to Italy with everyone else. From my own personal experience I tend to want Italy again when Sydney is not meeting her milestones or keeping up with her peers. Or when everyone is moving through life without the weight of a disability on his or her back and I am carrying a ton of bricks on mine. Suddenly I am back at stage 1 of the 7 stages of grief and I begin the whole process to acceptance again. However this time I find myself a little stronger than the last time and this time I am a little bit more familiar with Holland.
Personally I have been to Holland and back at least a dozen times since Sydney was diagnosed and I find something new to love with each visit. In my mind this is how I would describe “Chronic Grief”. I will revisit my loss numerous times over the course of my life with Sydney but with each visit I will bring back a new pearl of wisdom. When you look at it that way, it’s not so bad.
So to answer my own question of how many steps does it take to get to the heart of acceptance? I would have to say a lifetime of countless meaningful and inspiring steps.