My daughter

IMG_6186

I don’t write much about my girl any longer. It’s too hard and sad.  Luli has struggled with her behavior since April, when her visit with us went so wrong.  It’s a damned if you do, damned if you don’t viscious cycle.  When either of us visits her, we are with her for only a few hours, most of the time is spent traveling to ATL, then to Fort Lauderdale and back. And her behavior goes haywire when we leave. After the most recent round of issues, her behavior support team got on the phone with us yesterday.  We had a conversation that helped me put another small piece of the puzzle together.

The very first psychiatrist we ever worked with described Maria as having organic brain damage. He was the one who pushed Sherod and me to look at the situation with our precious child in terms of triage and to recognize that her little self had been so deeply broken through her infancy and before we were able to adopt her, that we had to be careful not to let our own lives be consumed by the dark and bitter realities of so much brokenness.

Those words, which I’d tried to forget, were with me when, some 10 years later, the amazing people who had gathered around our little family to help us care for Luz Maria, met us for breakfast one morning in the spring of 2012. These were people with the skills and heart we had needed to put pieces in place after we went through a rapid-fire series of placements in the adolescent psych units in Miami and Fort Lauderdale, when Maria was 13. Now, at 15, Maria was out of control again and we were going under with the stress and chaos of having a young person who had become dangerous to herself and us.  A bed was opening up in an intermediate care facility (ICF) and 6 weeks after our breakfast, on May 16, when Maria turned 16, she’d be eligible for placement there.  The two women who were having breakfast with us looked at us and said, “it is time to let go of her.  This is a place where Maria can live for the rest of her life where she will be safe and loved.”

Maria is now 22. For an 8-month stint when Sherod and I moved back to Alabama, she lived at an ICF in Tallahassee but the level of neglect we observed there was so serious we moved her back to BARC.  On and off during these past 4 years, Maria has been in good enough shape to come and visit with us. Most of those visits were glorious and then the last one was worse than a nightmare because there was no waking up from the amount of self injury and aggression she engaged in.  Since then, it’s been pretty much a roller coaster for her back in the ICF in Fort Lauderdale.

The new piece of the puzzle we’ve been given comes from the work that has been done on the impact of trauma on infants and very young children. If the trauma is severe enough and lasts long enough, a very young child’s emotional development simply stops. Dr. Hughes, that first psychiatrist, told us she had organic brain damage. It was the parts of her brain that gives rise to emotions and the regulation of her behavior that were so injured by the traumatic experiences of her infancy. We kept trusting that the plasticity of the human brain worked in our favor. There was nothing we weren’t willing to learn or do or try to help her overcome everything that went wrong for her from the moment she came into the world.  Somehow, that’s what it meant to say, “Love wins.”

For more reasons than I can enumerate, Sherod and I have never doubted that we took the most financially responsible step we could when he retired, which was to move to Alabama. We made that move trusting that with Maria in Tallahassee, we were a 3 ½ hour drive away and could do what we needed to do to take care of her.

And we hoped. Oh my God, we hoped to the core of our being, that there might come a time when she would be able to live and function in a less restrictive environment than an ICF, so she could maybe, possibly, move to Alabama.  This state systematically dismantled the safety net for people with Maria’s needs years ago, so only a significant improvement in her ability to manage her behavior would ever allow us to be near her.  Yesterday, I faced the reality that I need to let go of that hope now. I know how to do that—I’ve done it before and any loss of hope for a specific change, a specific outcome, in no way diminishes the love I have for my daughter. It simply frees me to deal with what is and keep learning how to love her in new ways.

Tonight, I got a call from the nurse on duty at BARC. Maria was running a high temperature so they’d taken her to the doctor who had then said she needed to go to the ER because she has a serious infection and the doctor couldn’t figure out the locus of that infection.  Maria has now been admitted.  She has a staff member of BARC with her and is waiting in the ER for a room to be ready for her.  As soon as she is in her room, the staff member will leave.  Tomorrow, another staff member will be back at the hospital in the morning.

If I stay very still and I work on my breathing, I get through the minutes. But I think of my woman-child, who is a 3 year old living in the body of a 22-year old, lying alone in the dark, in a hospital, and my heart fractures again, and fear seeps through the cracks.  I try to remind myself that my daughter is one of the privileged in this country; she could so easily be incarcerated in a for-profit jail instead, as so many men and women with mental health issues are in Florida. In Alabama. In so many parts of this country.  And I pray.

Keep watch, dear Lord, with those who work, or watch, or
weep this night, and give your angels charge over those who
sleep. Tend the sick, Lord Christ; give rest to the weary, bless
the dying, soothe the suffering, pity the afflicted, shield the
joyous; and all for your love’s sake. Amen. BCP

9 thoughts on “My daughter

  1. Dear God Almighty, protect us these nights with your boundless love. Open our hearts to your mercy and bring us peace and strength.

  2. Precious Lord, take my hand
    Lead me on, let me stand
    I am tired, I am weak, I’m alone
    Through the storm, through the night
    Lead me on to the light
    Take my hand precious Lord, lead me home
    When my way grows drear, precious Lord linger near
    When my light is almost gone
    Hear my cry, hear my call
    Hold my hand lest I fall
    Take my hand precious Lord, lead me home
    When the darkness appears and the night draws near
    And the day is past and gone
    At the river I stand
    Guide my feet, hold my hand
    Take my hand precious Lord, lead me home
    Precious Lord, take my hand
    Lead me on, let me stand
    I am tired, I am weak, I’m alone
    Through the storm, through the night
    Lead me on to the light
    Take my hand precious Lord, lead me home (lead me home) Lyrics: Thomas Dorsey

  3. Praying for you and your sweet girl! Remembering when she visited the day school and loved on the sweet babies! Makes me smile😘

  4. For the second this morning I am stopped in my tracks to pray boldly for the needs of others. I am praying for you and Sherrod. I can only imagine how hard is for the two of you not being there to hold her hand. I am praying for the physicians and staff that are caring for her, may they be kind and caring. And for dear sweet Maria healing. Peace be with you

  5. You have ministered to me, especially with these words: “Yesterday, I faced the reality that I need to let go of that hope now. I know how to do that—I’ve done it before and any loss of hope for a specific change, a specific outcome, in no way diminishes the love I have for my daughter. It simply frees me to deal with what is and keep learning how to love her in new ways.”

    Thank you.

    You and your family remain in my prayers.

  6. Dearest Rosa, I’m praying for you and Sherod and for your beloved Luz María, that by God’s grace she would know comfort this night and security in her companions by day. May the ministrations of her medical team be sure and tender, and may each of you know the deep peace of the Lord in the midst of this anxious time. — Deb

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s