So beautiful. So hard.

Quinceañera

I had the privilege several years ago to go to a writer’s workshop where I met Kate Bowler. She is well-known for her work on the Gospel of Prosperity and for what she has written since being diagnosed with metastasized colon cancer at 34. With immunotherapy that has worked remarkably well for her, it would be more accurate, at least for now, to describe her condition as chronic, rather than terminal, but there is no way to know how long that will be the case.  Kate is as kind, generous. and insightful as anyone I know.  There’s a phrase of Kate’s that has become part of the fabric of hope and consolation in my life. With no pat answers for the why of illness and suffering, she says, “Life is so beautiful. Life is so hard.”

Eighteen years ago this week, I was putting a car seat in the back of the Volvo I had bought a few months earlier. I had chosen the safest car I knew of because I would soon be carrying a precious little girl in the back seat through the awful traffic of Southeast Florida.  I had washed about a dozen skivvies and t-shirts for a 24-36 month old toddler, and little socks, too, and jammies and overalls. Friends at work and friends at Sherod’s church had thrown a pair of lovely showers for us so Luz María’s room was filled to overflowing with gifts, from the practical to the utter frivolous and fun. Mary, the woman who first got to know Maria and helped bring us into her life and she into ours, had made a beautiful bed skirt for the small brass bed I’d slept in as a child. I’d sewn matching curtains and together with Sherod, had made a contrasting, upholstered window cornice. Neither my heart nor her room in our home in Fort Lauderdale could contain all the hope, joy and expectation with which we waited to bring our girl to her new forever family.

Last week, we got word that Mary, the friend who found our girl and brought her into our life, has been moved into hospice after a diagnosis of ovarian cancer and all kinds of complications.  We lost touch years ago when she and her family moved, and then Sherod and I went off in our own new adventures, but I have always harbored the hope we’d reconnect and she’d get to see Maria as a young adult.  

 There’s the regret that I did not make more of an effort to stay in touch with a woman who changed the trajectory of my life. Even more, these days, there is growing concern for my María.  For two months, she has been slipping away from us in a new and unexpected way. First, we began to hear her tell  somewhat bizarre stories, like that she’d gotten married and was pregnant.  Then, she stopped talking to us almost completely. She had been calling, sometimes several times a day, and it just stopped. We call her daily as well and now, she refuses to come to the phone. The one time I’ve spoken to her recently, her affect was way off, her voice was shrill, the content of the conversation deeply disturbing: “Mama!!!! You are alive! I brought you back from the dead”.  No gentle challenge from me could convince her otherwise.

Yesterday, we had a phone consult with her support team.  Like us, they thought at first this was a new attention-seeking strategy. After all, María has been endlessly creative in her quest to get all the attention she could. But in the past, when ‘psychiatric symptoms’ manifested themselves, we had an effective plan that would quickly help her stop trying to get attention that way. This time it has not worked. It is more accurate to describe her now as quite frequently delusional, and possibly, hallucinating. The affect is too different.  The withdrawal is too real.  Later today, the next consult is with her psychiatrist.

There are more questions and fears than I can put words around. There is also all the accumulated joy of small and simple, and sometimes breathtakingly grand moments, with my daughter over the past 18 years. On March 3rd, when I am at Cursillo and Sherod is with María to celebrate her “Gotcha Day,” I know I will once again be overwhelmed by the knowledge she is the best thing that ever happened to us.  Kate has said it best: “Life is so beautiful. Life is so hard.”

12 thoughts on “So beautiful. So hard.

  1. Rosa my dear friend, this news brings sorrow and fear to all of your friends who have been hoping that progress might miraculously be made. Reaching out to you with just a brief message seems so useless, but I hope that the knowledge that SO MANY are keeping you, Sherod and Luz Maria on their hearts, will be of some small comfort in these frightening times.
    love always,
    Liz

  2. Oh, my friend. I hate to hear this. I hope her medical team can find the root cause of this new illness and bring her back to you as the loving daughter you have always know. We love and miss you. Mary

  3. Dear Rosa, I am so sorry to hear of Maria’s ‘new place’. My heart goes out to you and Sherod and to Luz Maria. My prayers continue for each of you….may you continue to cherish all the beautiful moments in theses past 18 years and I pray that more are yet to come.

    On a different track, my heart is saddened with the news of dear, sweet Mary. In my heart I know that her strong faith that has guided her each and every day will continue to bring her strength to bear the agony of terminal cancer….I have no doubt but that sweet Mary is looking forward to being an angel in Heaven….she has certainly had plenty of practice here on earth.

    I love you dear friend. You and Sherod give each other hugs from me to each of you. Liz

  4. Dearest Rosa, You have all been steadily in my prayers the last couple of days, and now I add your friend, Mary. Life – so filled with the beauty of the smallest flowers, and with the anguish of care for our children.

  5. Rosa,
    I think of you often, and miss your wisdom daily! I am so glad that I got to visit with Maria when she would visit at ADS. I will never forget the visits to the baby room, and those sweet smiles when I let her hold those precious ones. Love and prayers for you, Sherrod and sweet Maria.
    Jana

  6. I mourn for you snd S in this change. I love you both and so admire your love and persistance in this life of Maria. Please know that we love you and pray everyday for you all.. Please keep us informed as this new development unfolrds.

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