There’s a song in the air,
There’s a star in the sky!
There’s a mother’s deep prayer,
And a baby’s low cry.
And the star rains its fire while the beautiful sing,
For the manger of Bethlehem cradles a King!
My Mother’s favorite carol isn’t well-known. It isn’t Silent Night, or Hark the Herald Angels Sing, or It Came Upon a Midnight Clear – although she loves all of these and many more too.
My Mother was a music teacher who taught all her five kids to play piano and sat with us while we practiced first that and then, for each one, another instrument as well. Three of her children majored in music in college. Because of my mother’s influence, we went to symphony concerts, had a library full of LP records (and then 8 tracks and then cassettes and then CD’s), and we sang lots of songs all together on long car trips in a series of AMC Rambler wagons.
My Mother was thrilled to be a Mom. She said it was her favorite occupation. She stopped working for some years “to rock babies”, and went back to work only when the economics of financing a family with five children made this decision necessary.
My Mother was the encourager in the family. She thrilled and enthused about every accomplishment, and she was there when things didn’t go so well too. She was the family’s cheerleader, who was never happier than when all her kids were home and under the same roof. She had lots of ideas about how to have lots of fun with very little money.
My Mother was the proudest grandma that ever lived. She loved being with and cheering on every one of her grands. When it became clear that some of this brood had disabilities or learning differences, she remained confident, stalwart, and strong, and that encouraged all of us, the parents of children who were different than most others, to find our way to confidence and hope as well.
My Mother was stupendous at supporting my Dad in his ministry. She had his back, long before that phrase came into vogue. She loved his sermons and raved about his leadership. She was just as much of an encouragement to him as she was to all the rest of us. My Dad was sometimes torn down by the nastiness that sometimes accompanies ministry with the children of God, and Mom walked with him through those deep valleys. She was one of a dying breed – pastor’s spouses who are in ministry with their pastor partners.
My Mother was an advocate for justice, particularly but not limited to justice for women. She chaired Presbytery and Synod committees on justice for women, and taught PW Bible study for years and years, always emphasizing those points that dealt with the plight of the oppressed. Her statements on and advocacy for reproductive health and justice were well-reasoned and argued. She was so honored to become an ordained Elder and was thrilled when two of her daughters became Ministers of Word and Sacrament. She was fierce in her support of justice.
My Mother was a voracious reader – biographies, histories, and mounds and mounds and mounds of murder mysteries. She drove Dad nuts by reading the first couple chapters of a mystery, and then, invariably, reading the last few pages, so she knew how the story would end. She would then happily go back and read the rest; knowing the ending brought her satisfaction. One of the books she read every day was the Bible. She was up every early morning of my life to read and to pray. All whom she loved were remembered in the quiet hour before the rest of us got up. The support of those prayers carried us all through many triumphs and challenges.
My Mother was a wonderful teacher – and though I have two education degrees, most of what I know down deep about teaching I learned from watching and working with her. She loved all the kids she taught in the inner-city school where most of her years in the business were spent. She advocated for them, for their needs, and for maintaining arts education, which can make such a difference to people – but especially children – most especially those who have very little in their lives to get excited about or in which they can feel pride. Children she taught stopped us for years after her retirement, as they, now adults, saw Mom and wanted to let her know that she and her classroom were remembered with love.
My Mother doesn’t remember any of this anymore. The things that were at the center of her life are lost to her, and she is lost, in most ways, to us. She’s physically okay – although the fact that she forgets to eat, or has lost interest in food, means that she’s smaller each time I see her. She would like to visit her parents, who are long dead, and wonders out loud whether she should get married to my Dad, in that they sleep together. I have no idea what she sees when she looks in the mirror, but she just does not understand herself to be in her 80’s – in her mind she is much younger. She can’t remember who her children are most days and her grandkids, once the pride of her existence, are totally confusing to her. Once very articulate, now she struggles to find simple words. Once adept at turning a wickedly funny turn of phrase cannot now follow when others do so.
Among the things my Mother has not lost are music and celebrations like Christmas. She still knows all the verses of most hymns, even some that most find unfamiliar, by heart. Although she can no longer set up her voluminous candle collection, decorate the tree or bake cookies, she is still visibly and tangibly filled with joy at worship and the celebrative moments of the holiday.
My Mother’s favorite Christmas carol – a love the disease has not yet taken from her – is There’s a Song in the Air. It is a carol with gorgeous imagery and lovely poetry – true to my Mother’s values and her background in composition and rhetoric along with music, the text is as interesting as the music. As Advent begins, I am reflecting on the holy evangel brought by “the beautiful” in song on that first Christmas night, and how this evangel, this gospel, is a message of hope and life for those who have lost much of who they were to brain diseases that cause, among other symptoms, dementia.
The first words shared by “the beautiful”, the angels who appeared to the shepherds in Luke chapter 2, was “Do not be afraid.” We have no reason to be afraid, they say. Dementia is a scary symptom that emerges from many forms of disease. Fear is engendered as the disease progresses and more and more of the person’s being and relationships are lost. Fear of what will happen next to this person we love, who can no longer remember us, can overcome us. Grief at what has been lost can feel like more than one can handle. My grandmother had non-Alzheimer’s dementia, and so does my mother. I with all others whose loved ones have lost much of themselves from dementia have to grasp the advice of the angels and stave off the seductive default position of fear – great and oft-overwhelming fear – that the fate of our loved ones will fall upon us. For we who live in fearful situations, we are called to claim, rehearse and remember the good news that fear is not our call – that the God who sent “the beautiful” to announce the coming of the Messiah will stand with and uphold us, so we must not be afraid.
There’s a tumult of joy
o’er the wonderful birth,
for the virgin’s sweet boy
is the Lord of the earth.
Christ comes to bring joy to all the people, so “the beautiful” say. I can honestly testify that joy is not lost to me or to my Mom in our relationship as the disease continues to grow and change. We still laugh together. She still wants to be hugged, and she hugs back. While she may not remember my name, she never forgets to end every conversation with “I love you.” We both enjoy music, worship, cooking, and conversation – and while this last becomes more difficult each time we meet, we still are both invested in the effort to take part in all of these, every time we are together. Joy and enjoyment of each other is still part of our relationship.
People whose loved ones are living with dementia can become so frustrated with the lost abilities their loved ones used to have that they stop trying, they cease investing, they don’t take the time to enjoy each other anymore. I believe we are called by the God who sent the angels with the promise of joy for all to keep working at relationships with those whom we love who love us, whom God has given to us as signs of God’s grace. We must accept and celebrate this gift of God and take part in the joy God gives us, even as the disease progresses.
In the light of that star
lie the ages impearled;
and that song from afar
has swept over the world.
Every hearth is aflame
and the beautiful sing
in the homes of the nations
that Jesus is King!
Finally, the angels shared the linked good news of glory to God and peace to the earth. While there are many moments when I am not at peace about my Mom’s condition, I have learned to accept the gift, when it comes, of peace. Acceptance of this gift is a step I sometimes forget, and when I do, anxiety can consume me. Prayer is, more than ever, a required part of life. Prayer helps me balance my priorities; it reminds me of the precious value of time; it helps me to slow down and be at peace.
“The beautiful” offered news of this peace to a world where peace was hard to find. I am blessed to live outside a conflict zone, and not under the occupation of a vicious and dictatorial foreign power – two blessings the shepherds on the hillside to which the evangel came did not enjoy. What does a message of peace mean when your life, or your world, is not at peace?
The shepherds heard this news and did not scoff, if Luke’s Gospel is to be believed. They heard and they took the news as truth – even the news of peace, shared in a place that knew not peace. They heard, and they went to see – and after seeing, they shared the news, the first evangel-ists of this new Word.
So we too, we whose loved ones are living with dementia – we can hear this news and share the peace that God has offered the earth. We can live in this peace, and claim it, in the midst of the chaos, struggle and suffering the disease creates and sustains. We can give glory to God for the gifts of love – touch – help – mutuality in prayer and support – relationship within a family. My Mom isn’t always clear that she is my Mom – but the fact that she gave me life and continues to share life and joy with me sustains me in my efforts to continue to be her loving and supportive child. In this, I give glory to God for the gift of peace.
We rejoice in the light,
And we echo the song
That comes down through the night
From the heavenly throng.
Ay! we shout to the lovely evangel they bring,
And we greet in his cradle our Savior and King!
Originally published four years ago during Advent 2013, this tribute to my Mother, Ellagene Morgan Holder, is republished now two years after her death, as a continuing tribute to her and an encouragement to all who are walking through the valley of the shadow of dementia with those they love.
Cynthia Holder Rich is the founding director of ecclesio.com and the second child of Ellagene Morgan Holder and R. Ward Holder, whose life continues among the saints who from their labors rest. She thanks God for their witness.