“…One short sleep past, we wake eternally
And death shall be no more; Death, thou shalt die.”
There is an advantage to social networking, it brings us together; it allows for a support system so wide and strong, built from invisible strands, like a silken spider web. It can be like a blanket-comforting and warm. It’s a tenuous connection, but it’s real. There are cheering crowds when our children take a step, hold a spoon, become prom queen, turn computers in to voices and say “I love you” or “you’re mean!” to therapists making them do work, or better still, to teachers. There are “happy birthday” emoji’s from half a world away as we all celebrate in our children growing older, because in the world of Rett, growing older is the brass ring.
And, it’s there as we see the posts that break our hearts. We come together and mourn the children who we’ve come to love, we’ve watched grow, we’ve seen overcome time and time again until their bodies can take no more. In Life, this is the price for loving…having in turn to grieve. In Rett syndrome life, it is a constant high price and with a cure within reach it seems especially cruel. In just the past few days we have had cause to surround those within our community whose children have completed their journey or near its end.
And with each passing, each ending of a journey, for the parents whose children have not crossed that threshold, a shadow creeps into our minds. Fear. It rolls and ebbs like the tide. Reaching out it’s tendrils to swirl and twist in our minds and hearts. But, in these dark times, we find a way to find a light. Whether it is believing that the sweet soul, loved by so many, who touched so many, has completed their purpose here on Earth and now flies with the angels in Heaven; or whether it is believing that they are now whole and running and playing with all their Rett sisters and brothers; or are butterflies that joyously flit in the sunshine, free from any Earthly woes, each faith, or non-faith, will bring it’s comfort in what way it will.
And, our circle, our web of support will do it’s best to be a blanket-to surround these grieving families with our words from far away. We will hold our children tighter because they are our blankets in these sorrowful times. Hearing their heartbeats, feeling their breathing are the tenuous connections that repel that creeping shadow.
So, Death be Not Proud. Though you may come to take a soul to eternal sleep, there are thousands upon thousands who will remember them. You, Death, have no power over even a whisper of memory, nor of a scent that brings them to mind; no power over Love that goes on forever- “One short sleep past, we wake eternally” and that is the power of Love.
Prayer for a Very New Angel
God , God , be lenient her first night there.
The crib she slept in was so near my bed;
Her blue-and-white wool blanket was so soft,
Her pillow hollowed so to fit her head.
Teach me that she’ll not want small rooms or me
When she has You and Heaven’s immensity!
I always left a light out in the hall.
I hoped to make her fearless in the dark;
And yet, she was so small—one little light,
Not in the room, it scarcely mattered. Hark!
No, no; she seldom cried! God, not too far
For her to see, this first night, light a star!
And in the morning, when she first woke up,
I always kissed her on her left cheek where
The dimple was. And oh, I wet the brush.
It make it easier to curl her hair.
Just, just tomorrow morning, God, I pray,
When she wakes up, do things for her my way!