Showing posts with label Trisomy 18. Show all posts
Showing posts with label Trisomy 18. Show all posts

Sunday, January 29, 2017

The Truth of the Matter

They exchanged the truth of God for a lie...
~Romans 1:25a

"What is truth?" Pilate asked Jesus. It's a question that has echoed down through the ages, and still confounds people today. My high school English teacher often challenged us to ask ourselves, "Is it truth with a capital 'T' or lowercase?" Is it absolute truth, or is it relative? That's an even more difficult question in our culture now where absolutes are shouted down absolutely. We are encouraged to be tolerant toward all...unless someone's conviction doesn't permit acceptance of all views. It's an impossible weight to carry, and at times it seems like the world is fracturing under the stress of it. This past year has been the worst I've seen, and I've found myself shaken when I've discovered many of my truths are at odds with friends and family whose beliefs and values I've trusted. I do believe there is Truth with a capital 'T', God's Truth, but I have to be careful to define it on His terms and not my own. 

Recently Kraig and I started watching the series The Man in the High Castle. Its premise is an alternate history 1962 in a world where Germany under Hitler won World War II. The eastern United States is now part of the Reich, and the Pacific States have been ceded to Japan; an uneasy alliance exists between Japan and the Reich, and a stranger relationship has developed between the former Americans and their captors. The story is intriguing and unnerving, obviously because the thought of the United States under an ideology like the Reich is horrible to imagine, but also because there are so many plot points that reflect realities that are in our own world today.

One of the most disturbing characters is Obergruppenführer John Smith, an American-born high-ranking official of the Reich in New York. Though he was born before the war he is, at least as far as we've gotten, completely loyal to the aging Hitler and the ideology of the Reich with its fierce anti-semitism and annihilation of anyone who doesn't fit the Aryan model. He is ruthless, and would be impossible to sympathize with in any way if he did not have a family which he obviously loves, particularly his teenage son, Thomas. 

(For those who haven't seen the show and hope to, the following bit is something of a spoiler, though I have no idea how it's going to play out as the seasons continue. I'll leave the decision to go on up to you.)

In an episode 8 of the first season, Smith takes his son to the doctor to check out a strained wrist. After the appointment, the doctor privately pulls Smith into his office and reveals that Thomas is in the early stages of a terminal congenital disorder. In the scene, Smith is visibly shaken, and I remember thinking, Whoa, this will make him more human! Smith asks the doctor if they can get a second opinion.

"You have that option" the doctor replies. "But you should be aware that if he is submitted to others for examination this would become an institutional issue."

"Oh, I see. Yes, of course," Smith responds, flustered out of his typical reserve. 

What? I thought. That's not an option! And it hit me that under a totalitarian system, there wouldn't be the freedom to privately seek other opinions, particularly in a system where illness was seen as imperfection to be eradicated.

But the scene didn't end there. The doctor counsels Smith that he and his wife can treat their son at home (quietly and behind the scenes, I thought, to get around regulations). Then the doctor pushes a syringe and ampule across his desk to the dazed father. 

"As for medical assistance..." he says, describing the ingredients: morphine, scopolamine, and prussic acid. 

And finally the full truth of what was going on in the scene sank in. The "medical assistance" was death. In the Reich, there was no room for disabilities or long-term care for anyone terminally ill. They had to be terminated. They were a drag on society, or worse, a blight. Later that evening in the same episode, Smith flips through an old photo album of he and his brother. His wife looks over his shoulder reminiscing and speaks of how she wished she had had siblings and the great relationship like what he had had with his brother. "Seeing your brother like that, it must of broken your father's heart," she says, revealing to the audience that Smith's brother must have died of the same disease Thomas has. Then, in complete contradiction to her own logic regarding the joy of siblings, and in oblivion to the truth she says, "Well at least now, when someone is terribly ill, they're not allowed to suffer. That's a blessing."

I was still mentally reeling over the sight of that bottle and ampule. This was not an alternate history. Oregon already has its doctor-prescribed death-in-a-bottle for terminal patients. Colorado and California passed similar laws in their November votes. It's not our policy-makers who voted in these laws, it is "we the people." We don't have the excuse of a dictator with a hit-list against anyone who doesn't fit his ideal of humanity. In our country, the arguments seem to run along the lines that these prescribed suicides are for overall "health" in a  way--family health, society's health, the removal of an individual's suffering. We should not allow suffering. We should not create an economic drag on society. All the while we move blindly into a new Reich where prescribed death is acceptable and cheap, while actively researching potential cures and caring for those who are weak and suffering, and learning from them in the process, is seen as an impediment to cultural advancement.

Eight years ago today, our daughter Keren died. During the course of her life, from before she was born to the day she died, and since, she had purpose and significance. This wasn't just because we loved her, but because we saw that every piece of her Trisomy 18, genetically-flawed, body had been given to us by a God we loved and trusted. She was not a curse; she was not an object of suffering; we were not heart-broken by her brokenness. We were transformed by her existence. We grieve her death, but it is not grief without hope.

In addition to our own walk, throughout her life we were surrounded by family, friends, doctors, and teachers who were there for us and for her. They sought ways for her to reach her full potential. No doctor or teacher could really state her full potential with "facts" because in this world where we can help the sick, people are continually seeking to discover things about our bodies and about diseases. There is always the possibility of a cure. It is only in a world where suffering is considered unacceptable, life expendable, and death preferable that nothing will be done to improve it. 

We have a choice. We can go with the current flow and accept the "truth" that suffering is unacceptable and that there are certain people who disrupt things by their flawed existence, or we can stand against it by holding those who are suffering and learning together what true love really is. Yes, the world is broken, but it is God's Truth that it will be made new, and in a small, faithful way, we can be a part of that restoration.

Sunday, September 27, 2015

Death and Life Don't Mix

Today, technically, I became the mother of a teenager.

I have to qualify it with "technically" because Keren has been dead for six-and-a-half years. Her next sibling recently turned ten, and while we often feel that hormones have hit us, there is an awful lot we don't know about living with a teen. Even if Keren were here we wouldn't really know. She would probably still be giving us bone-cracking hugs and squealing excitedly in our ears. It's quite likely we would have added dealing with periods, but with diapers. And food would still go down a tube. Our lives would be a blend of doctor visits and therapy, all juggled around the crazy schedules of three younger siblings. We'd be in Michigan and Kraig would still be at his consulting job, and I'd be fully integrated with a thriving Trisomy community, discussing scoliosis and feeding and special education with friends I've known for thirteen years, and new acquaintances added each year.

At least, I suppose this is what our world would be like if Keren were still here on earth instead of celebrating her thirteenth birthday in Heaven. How does one celebrate a heavenly birthday? I have no idea. I doubt it's important when one is living in eternity. It's only here that the years tick by with significance.

I'm sure some who read this will feel guilty that they didn't remember it was Keren's birthday or remember to reach out and let us know they remembered. Trust me, we don't hold it against you. I'll be more annoyed that you feel guilty about it. It's hard enough to remember the birthdays of family members and friends who are living than the date of one who is no longer here. I remembered because it's etched in my body and brain, it's part of me...and Keren's picture is on this date on our family calendar. But I don't remember all of the time. My remembering comes in moments.

I remembered this past week as those September dates in the twenties ticked by.

I remembered last night when a friend asked if today was Keren's birthday.

I remembered this morning when Jon ran out to show me that his top front tooth finally fell out. We did a happy dance and I told him it was pretty cool it had fallen out on Keren's thirteenth birthday.

I remembered when we were driving home from church and the kids were talking about snow. I remembered a day full of sunlight and snow-bright air a year after Keren died when friends and teachers and family came together to remember. It's not a sad memory because it's so infused with light.

I remembered when I felt a bit depressed riding home today, Kraig and I silent in separate thoughts, and I wondered if it was because it was Keren's birthday.

I remembered when my Mom sent a note to say she was thinking of us and thanking the Lord for the gift Keren was.

I remembered when Jon and I made a chocolate birthday cake and we all enjoyed it and sang "Happy Birthday!" It was good cake. Keren might have deigned to taste a crumb.

There was a moment this week when I focused and thought about Keren. Really thought. But I wasn't thinking about her living self. I was thinking of the loss of her and the other losses that came because we lost her. I thought of the teachers whom we loved so much. We tried to keep connected, but life and time distanced us (not all on our side). I thought of the Trisomy friends whom I still "see" in Facebook posts. Some still have living kids, and I love to see their posts. But I don't get excited about discussions on feedings and doctors; it's not my world any more. I thought of the pain of losing Keren--that awful day. But I didn't stay on that thought for long. I can dredge it up and the grief will surge up with it, and to what purpose? To feel grief? I know it's there and I can tap into it as needed. I don't need to go looking for it.

And I guess that's the point I've come to. My life is full of life right now. I am continuing to learn and grow. God is stretching our family in completely new ways in our life here in Guadalajara and Kraig's new work of teaching. I am busy each day with kids who ask questions, test boundaries, throw tantrums, giggle uncontrollably, and lose teeth every time we turn around. If I spend my days refreshing the grief that death brought us it will paralyze me and I'll be of no use to the living. Life moves on, and I am moving with it. God has brought us to a new place. Death and Life don't mix, and "I am still confident of this: I will see the goodness of the Lord in the land of the living" (Psalm 27:13).

Above all this, death is not the end. For that truth, I'll keep living.
I believe in the holy shores of uncreated light
I believe there is power in the blood
And all of the death that ever was,
If you set it next to life
I believe it would barely fill a cup
'Cause I believe there's power in the blood.
            ~Andrew Peterson, "Lay Me Down"