Moving On

September 8, 2011

Two years ago I started writing this blog, sharing with you the joys and trials of caring for Lauren.  When I began I intended to write about the ins and outs of self-directed services and how the changes in service provision – from program-based services to individualized funding – affected the life of a young woman living at home with her family.  For awhile that is all I wrote about, except for posts that touched upon the medical, social, and emotional aspects of providing care for an individual with severe, multiple disabilities. 

One year ago, the idea that Lauren could use her self-directed budgets to support a life independent of her parents became a concrete plan, and my posts began to chronicle the journey of making that plan a reality. What I did not realize is how much of that journey or how many of my posts, were not going to be about the nuts and bolts of budgets or construction or staffing, but rather, about the process of letting go, the emotional roller coaster of redefining my role as caregiver, as Mom. 

I have been caring for Lauren for twenty-six years today.  I have been her protector, her support system, her advocate, her champion.  Without me she would not have survived....literally.  I have devoted my life to making sure that she had a life.  I defined who she was.  I did not realize, though, how much she defined who I was.  The process of letting go of my role as daily caregiver is leaving me with many questions about who I am.  Lauren has been my anchor, mooring me to the duties, responsibilities, and schedule that ruled my life and outlined my days.  Now, Lauren is no longer part of every thought of every waking moment.  The fact that I no longer see her every day is still mind boggling for me.  The future, my future, now looms ahead of me like a thick fog. I cannot see the road ahead or know where I am going, or, truthfully, where I want to go. The ability to choose how to spend my days or decide what to do with the rest of my life are not concepts that I thought I would ever have the opportunity to explore.  I realize now that providing care for Lauren has acted like a filter through which I saw everything else in my life.  Her needs, her moods, her limitations have been the parameters within which every action has been taken, every decision made, and every relationship formed. Now that the filter has been removed, I have to find the courage, the energy, to no longer live my life through Lauren’s for the first time since I was in my twenties. I must come to terms with the fact that burying myself in Lauren’s care has prevented me from doing many things, but it has also protected me from having to do many things.  I may not have been able to follow a dream but I didn’t have to risk failing at it either.  Things that were not in my best interests were tolerated if they were in hers.  Caring for Lauren has spared me from taking chances, risking anything that would have affected my ability to care for her.  How do I move on from this safe, familiar place?

The first step I am going to take in moving forward is to make this my last post.  I will spend the rest of my life caring for Lauren in one way or another but on her twenty-sixth birthday I am giving us both a gift.  I will respect that even though her challenges are serious and numerous, she is an adult and deserves a life of her own....and so do I.  She has grown so much in the two short months she has been in her own home.  She has grown up, and now I must do some growing of my own.  This blog has been a bridge between the past and the future for us both.  It has been extraordinarily helpful to work out my thoughts in these posts and to tell the story of a young woman and her family.  Many readers have traveled with us on this journey and offered valuable encouragement along the way.  I thank you for your kind words and fellowship.  I don’t know what tomorrow will bring.  What I do know is that caring for my beautiful daughter with developmental disabilities has changed me, enriched me, and educated me as much as it has placed extraordinary limitations on my own development.  Can I be as courageous as Lauren is showing she can be as she embraces her new life?  I hope so.

Happy Birthday, my beautiful Lauren.  Happy life.