by Anniel 2/27/17
Each of us, in my opinion, is an eternal being with lives that have meaning beyond ourselves. I have written before of our granddaughter Eliza, known as Red, and the possibilities of her life (ST, Looking Backward to Understand the Present, 8/6/16).
Red has many genetic markers that make her unique. Her parents, our son, David and his wife, Jessie, have finally been able to get her into a testing program that indicates her life will be more stringently tried in the future, as will her parents and siblings lives.
Until a week ago we knew she had the following genetic markers:
Bright red curly hair, when no one else in the family has it
Epicanthic folds on her inner eyelids (downward folds)
Curved up outer eyelids
Late speaking (hardly understandable at times)
Cleft soft palate, so small the docs don’t want to operate on it if they don’t have to
Losing baby teeth very early, with new teeth also coming in early
Railroad track earlobes
Single palmar transverse creases, (palms of both hands have only one straight line across, used to be called a Simian Crease)
No sense of danger to herself, or to anyone else for that matter
Isn’t defiant but cannot be effectively disciplined
But with all this she is extremely intelligent, in odd ways
Red has been undergoing intensive speech therapy in a special preschool, and tentatively diagnosed as “autistic,” which seems to be everyone’s catch all diagnosis these days. Then David suggested she might be what is known as a “mosaic”. (All the markers can be googled), so the family requested further genetic screening.
To just finish this out. About four weeks ago a savvy med tech heard a previously undetected heart murmur and the docs did ultrasound heart imaging and an MRI, and found some very serious problems that may be able to be solved by surgery, or not. Both of Red’s heart chambers are fused in one, and. . . I think I will just tell you the names of what she has. Google if need be. She has:
Aortic aneurism, rough wall, which has been imaged as both heart chambers fused into only one, called a Bicuspid Aortic Valve, that may require surgery to place two new chambers or valves, or both
Left ventricular hypertocalulation (LVHT)
May need heart transplant down the road
Connective tissue disorder, which is really a Collagen disorder
The geneticists think Red may wind up with a syndrome all her own.
David says he’s doing OK, which means he’s hanging on by a thread, and the docs have decided on a complete genetics work up on the whole family, maybe including all the cousins. Red seems to be normal for her and hasn’t slowed down any. David says she seems happy and fine.
That doesn’t mean I am. But being philosophical seems the best bet we have. If you read about Red in that first article you might remember that when her grandpa Bear called her a bug, she shocked everyone by clearly saying”No, papa I’m not a bug, I’m a human.” She was not yet four-years-old so we know there’s a lot going on in her head.
This morning in our maundering way, Bear and I began discussing history and how teaching it is so difficult when we all perceive things differently and learn, value and sometimes discard what we think we know. We forget even ourselves and how our lives grow and change over time. What I think now may be entirely different than what I thought last year, or thirty years ago. The people I thought I would never forget, I did.
So here we are, a small knot on the string of eternity, your knot is as limited as mine is, even when they touch each other. No matter how careful we are we send our children and grandchildren, our friends and neighbors, even ourselves, out into the larger world. Red will go out from her parents to forge a new history and identity all her own, as will her sisters.
One big question Bear and I explored is, what happens when people freely CHOOSE not to learn from history. When they, on their knot of eternity’s thread, look not around them nor acknowledge the unique nature of those sharing the same time-line? Are some so willful that they would rather be dead to anyone else? Are they the ones seeking power? So much history gets lost that a form of spiritual amnesia takes place. None of us can learn everything about another, there is just too much out there.
It seemed, for a few minutes this morning that I could see, I could understand history and eternity in a completely new way, but it all slipped away very rapidly. We face the same human challenges, but each of us is a totally unique person in history. I tell you my story and you may value it as you choose.
Jesus sacrificed His life on earth for our life in eternity. Eternity seems now to me that it is about growth. Always and forever. That idea tastes right to me. And Red’s “knot” will cross ours again, as will all our children and grandchildren’s.
Perhaps in God’s eternal “now” our “knots”, yours and mine, without personal judgment, will stand revealed to each other for our greater good.
Hope to meet you there. • (703 views)