Light of My Life, October 2001

One of my earliest memories of our child is of her striding purposefully down a hallway, Sherod in tow, and a small handbag firmly in place under her arm.  It was Sherod’s first time meeting her in the hospice in México where Light of our Life had been left to die after her biological mother and the woman who bought her abandonded her at birth.  Perhaps I was projecting on her but I think not.  That morning what struck me was this child’s determination to find her way to life.  Though her capacity to love deeply and form strong bonds was crippled by so many years making it on her own, she was an absolutely delightful, beguiling little girl with a well developed sense of mischief and humor.

Yesterday  Sherod and I sat across the table from two remarkable women who have been a constant source of hope for our child.  One is her behavior therapist, the other a person who has dedicated her whole adult life to creating safe spaces for people with very special needs.  She is zealous in protecting the dignity and the quality of life for people who are so fragile cognitively and emotionally that it is easy to pass them over.  These two guardian angels of our girl laid out a path into the future for Light of our Life that we knew was coming but not this fast.

Earlier this week, a place opened at the intermediate care facility that our behavior therapist helped start in the 80’s.  A 10 or 15 minute drive from our house, it is a group of three homes on a large fenced property that shelters 36 people with significant special needs.  This is a place where our daughter could live out the rest of her life safely, with people committed to treating her and others like her with respect and gentleness, where she would have a level of care that we simply can no longer provide.  She would not be drugged and warehoused.  In a rich, nurturing environment, she would be encouraged to continue developing her full potential for the rest of her life. “Placement” is just a nicer word for institutionalizing someone and at this stage in her life, it is the most responsible way we can show our girl that we love her. The ball is rolling now and it is likely that Light of our Life will move to this facility in early June.

Once again, I am offered harsh and lovely grace.   Those early days of June, when I lost my mom and one year later will be surrendering my daughter, are the cruelest days now.  How terribly strange to have to discover who I am to be, not by addition but by subtraction.  As we talked over breakfast, one of the  women used a phrase that tumbles and rolls in my mind over and over again:  she said that our girl will be considered “a family of one” as other receive her into their care  and we relinquish our claim to her.  We accept that in many respects, she has always been a family of one.  Even as an itty bitty girl, she was so incredibly self-contained.  The only way I got her to allow me to hold her close was by getting into our pool with her for hours on end in the weeks after we brought her home from Mexico. I’d stand where she could not touch bottom, and in the middle so she couldn’t grab on to the sides.  She had never had a tub bath, let alone gotten in a pool, so she was forced to hold on to me and let me hold her close. Getting in the pool with her was like trying to take a cat swimming; I still laugh at how hard she fought me and how she yelled bloody murder.

As much as I love her, our woman-child moves through life as if she was nobody’s daughter and everyone’s child.  I have always known with a mixture of sorrow and amusement that she constantly works the crowd, looking for something newer and shinier in the parent department —you never know, there might be someone out there with an even better deal than ours, and besides, the ones she has might disappear. A once-abandoned child can never have too many folks on retainer just in case she needs plan B.

Sherod and our two friends  talked over breakfast about these next steps, it was clear that this facility, with all kinds of staff and safeguards provides the structure Light of our Life needs.  She will be coming into a facility staffed by people who already know and love her because she has participated in several of this agency’s programs.  If there was ever a person who needed the whole village to have a decent chance at life, it is this young woman.  She has to be everyone’s child even though in my heart, she will always be my daughter.

Sherod and I were blessed beyond reason, when she found us and we found her. I know all these things and I can enumerate them endlessly. That said,  I tiptoe to the edge of real acceptance of the steps ahead but have to pull myself back quickly.  I can’t linger there  long yet because I rage, I rage with white-hot, all consuming fury. I will have to manage myself as we make and put the transition plan in place. Our daughter has to have the certainty of our quiet confidence and trust in what lies ahead.  Staying true feels overwhelming.  I am aware that it’s  going to take the village to get her dad and her mom through the days and weeks that lie ahead.  Please pray for us.