Busy, busy, always busy

First of all, I have a new book release, and it is nothing like my others. Elora Goes to the Moons is a children's book I wrote for my youngest daughter, who loves the Moon. I made a weekend project of flying the cartoon version of her through the Solar System. Several of my friends wanted their own copies of the book after seeing my fragile scrapbook version, so I scanned it, uploaded it to Createspace, received a beautiful-looking proof, and made it available in paperback on Amazon. It's handmade and handwritten, and it has a lot of fun little science facts throughout.

I've hidden my epistolary blog, Cavelost. Why? Because it's finished. I've done a couple of editing rounds on it, and today I uploaded the formatted version so I can get a print copy to do final edits and copyedits on. The characters have decided to expand upon their world and make Cavelost the first of a series called The Bacra Chronicles. I'll be starting the next book, Faelost, during NaNoWriMo. Cavelost is told by a former mercenary named Rin Sylleth, who wakes up trapped in a massive cave system. Faelost will be told by Rin's second son, Tessen.

On a sadder note, I lost my cat muse on Friday. Reno passed away suddenly during the night, and we have no explanation for it. Since he was young, only between 4-6 years old, the vet said it was most likely caused by a heart issue. We adopted Reno on Valentine's Day almost two years ago. He helped me out of the doldrums so I could finish writing Sand into Glass and editing The Crystal Lattice, and he sat with me through nearly every word of the three books I've written since. I'm in shock and I'm going to miss him tremendously. I keep expecting to see him lounging on his favorite chair and when I get up in the middle of the night, I run my hand across the end of the bed, expecting him to be there. It's difficult to write without him by my side.

A Little Lie Won't Hurt

I am meeting with a state representative on Saturday to discuss Kansas H.B. 2598. Right now, I am going to focus on a specific aspect of the bill, an aspect that has already passed in Oklahoma. This bill has far-reaching implications that have nothing to do with abortion. It is potentially family-destroying and will lead to an increase in suffering. There are plenty of disorders that when diagnosed in utero can be treated immediately after birth, but there are also disorders which are invariably fatal.

When doctors are allowed to lie to their patients, not only is trust broken, but families are shattered. The doctor uses his or her faith as an excuse to violate his patients’ trust. The following scenario could become common if doctors are allowed to lie when they think a family might terminate. It may be difficult to read. I know it was difficult to write. No one wants to consider the possibility that something could be wrong with the baby, but unfortunately it does happen. Most families are lucky enough to have healthy babies, but you never know when nature will give you something different than you expected.

* * *

Imagine for a moment that you are a young man living in a state where doctors are allowed to lie to their patients because of their own religious convictions. You get married and decide to have a baby. Maybe it happens right away, and maybe it takes a while, but as soon as you see that little line on the test, you are in love.

You go with your wife to her prenatal appointments, hear the heartbeat at ten weeks, watch her belly begin to round out as she tells you she feels the first little kicks. At twenty weeks, you go with her to the big ultrasound. The doctor tells you the baby is healthy, but was too shy to reveal his or her sex. You are disappointed with not knowing, but at the same time, the surprise is exciting.

You and your wife pick out names. You paint the walls and decorate the nursery, maybe as a birthday surprise for your wife. You have a baby shower, and everyone is excited. Maybe this is the first grandchild on both sides of the family, and you are overwhelmed with baby gifts. You begin thinking about college savings plans, vacations you can take with your child, and wonder what he or she will look like. You can’t wait to meet your baby.

Full term comes and one morning your wife wakes you up to tell you she thinks she’s in labor. When you get to the hospital, you can’t help but notice your doctor appears nervous. You brush the thought of it aside and excitedly support your wife through her labor. You call your family, and they wait for the official announcement. She pushes and the baby is born.

It is a boy! But, something is wrong. He does not cry. He does not breathe. His heart still beats, and he struggles to breathe, but he never will. His lungs never developed because lung maturation requires amniotic fluid, and a baby can’t make amniotic fluid without kidneys.

Your son has Potter’s syndrome. The doctor knew it from that twenty week ultrasound, and did not tell you because he thought you might decide to terminate if you knew. Your family spent forty weeks preparing to bring home a healthy baby, and now you won’t be bringing home a baby at all.

You are devastated. Your wife cries convulsively as the medical staff futilely tries to get the baby to breathe. He is fading and the nurses still keep trying to save him. Finally, the doctor tells them to stop and let your wife hold the baby while he dies. This condition is incompatible with life, he says. You struggle to comprehend what that means.

Your son looks perfect, but he dies in your arms, having never taken a breath. You hear the cries of healthy newborn babies through the walls and see happy families in the hallways. You were supposed to be the happy family with a crying newborn, but instead, your room is silent

You take your wife home to an empty nursery. Her breasts fill with milk, but there is no child to feed. They are engorged and painful, but not as painful as her loss. You are numb as you make final arrangements for the child you wanted and planned for. You call the doctor’s office to get a prescription to ease your wife’s postpartum depression and grief, but they are avoidant and take two weeks to fill a single prescription. The doctor never apologizes for leaving you in the dark. You know he knew. “Potter’s Syndrome” was written onto your wife’s chart at twenty weeks.

You bury your child, the son you were so hopeful for, who you wanted to take fishing and to baseball games. Your family weeps in front of a tiny casket. They had great hopes for him, as well. Grandparents wanted to spoil him. Aunts wanted to snuggle him. Cousins mourn the loss of a playmate. You can’t contain yourself and weep over the casket, which is little bigger than a shoe box. He was to be your future, but he is gone and you are having trouble coming to terms with it.

His death shatters your relationship with your wife. You can no longer look at each other without seeing the baby. You are afraid of having another baby because what if it happens again? What if the doctor tells you everything is going to be all right, when something is horribly wrong? You go to marriage counseling, but the counselor can’t offer you anything beyond, “It was God’s will”, and that isn’t good enough. Your wife blames herself, you blame God, the doctor never apologizes for the lie, and nothing can ever replace the child you lost.

You can’t stand to look at the empty nursery. Your wife can’t either, and she says she can’t stand to look at you anymore. She moves in with her parents and a lawyer arrives with divorce papers. Your marriage is over. You are another statistic, another marriage that could not survive the death of a child.

You move on, but you can’t forget. You cannot bring yourself to trust another doctor, no matter their specialty. What is that doctor not telling you? What if he says you’re fine, but you really aren’t? You avoid them and skip your yearly physicals. If you can’t trust one doctor, you can’t trust any. You develop a dull pain in your abdomen, but still stay home. Finally, the pain escalates and you can’t take it anymore. You go to the ER and find out you have end-stage colon cancer. The doctor tells you to trust in God and pray. You call your ex-wife and tell her good-bye. She sobs into the receiver. She and her new husband bring you flowers, but she still can’t look you in the eye. You still love her. You close your eyes and your last thought is of your son.

* * *

Now, let’s go back to near the beginning and see your world from a different perspective. You go to the twenty week ultrasound with your wife. The doctor calls you into his office and tells you something is wrong. You are told your much-wanted baby has no kidneys and will die soon after birth. You get a second opinion, and the baby is given the same prognosis.

You are devastated. After much soul-searching, research, and discussion, you and your wife decide to carry to term. You go through the stages of grief before the baby is even born. He is still alive, and you decide to celebrate his life, however short it may be.

Your wife decides to be induced so the family can meet the baby while he is alive. You set a date, go over your birth plan with the doctor, and call a photographer from an organization such as Now I Lay Me Down to Sleep. You are nervous and cry over the little kicks and the motions of the baby felt through your wife’s skin. You talk to the baby, sing to him, tell him you love him. You know you won’t have much time.

A sense of peace washes over you on induction day. The delivery room is quiet as the baby is born. The staff and doctors are gentle and they respect your time. The baby is carefully placed on your wife’s chest and she smiles and strokes his head. Her tears fall onto his hair. You take note of him, memorizing every hair, every beautiful finger and toe. You never want to forget. The photographer and the rest of the family come in to meet the baby. They hold him and kiss him. He only lives for an hour and fifteen minutes, but in that short time, all he knows is love and comfort.

It is a sorrowful day, but also a peaceful one. You knew it was coming and you were able to come to terms with it. There is no empty nursery to come home to, no freshly laundered, neatly folded clothes. The funeral arrangements are already made. That hour and fifteen minutes were not full of chaos and fear, because you knew your time was limited and were able to make the most of it.

At the funeral, you celebrate your son’s brief life. The photographer’s pictures were beautiful and you cry over the slide show. You bury your son in a special outfit you picked out beforehand. No one should have to bury a child, and it is never easy, but it is far more peaceful when you know it is coming. Your wife started on antidepressants early. She does not mind looking at you because it brings back memories of your short, yet beautiful time with your son.

A year later, you decide to try again. At the twenty week ultrasound, the doctor tells you the baby is healthy and you are able to believe him. No trust has been broken. You plan for your new baby. Your daughter is born healthy and screaming. When she is older, you tell her about her older brother and show her the pictures. You don’t think anything of going to your doctor when the dull pain starts in your abdomen. You have no reason not to trust him to do the right thing. Your cancer is diagnosed early, treated, and years later, you dance with your daughter at her wedding.

* * *

Because we have ultrasounds (and there would be an uproar if they were taken away), we have the ability to diagnose disorders and defects prenatally. It is unethical for a doctor to withhold vital information from new parents, information that could help them prepare for potential stillbirth, neonatal death, or major surgeries. We can’t take back this technology and pretend it doesn’t exist. It is here, and it has forever changed the way we approach pregnancy and birth. We need to accept that, and be grateful that it can help prepare parents for tragic situations. Trust is so vital in our relationships with our doctors and other professionals, and for doctors to intentionally violate our trust without repercussion is unforgivable.  It is unconscionable to choose to increase a family's suffering when you could have helped ease them into a horrible situation.

This scenario takes into account just one aspect of H.B. 2598, but I believe this alone is reason enough to reconsider the legislation sweeping many states right now. I wrote it from the father’s perspective because most of these legislators are male. I know it was not easy to read, but a little empathy is vital right now.

Elegy

I can never find the right words when someone dies.

I never knew you like I should have.  Our friendship was casual and occasional and barricaded by distance.  I didn't know you, not really.  I didn't know about your past or your dreams, only your present.  Your partner is my friend and I knew you through him.  He loved you more than anything and now his loss is deep and infinite.  I will miss your kind words said during our raids through the virtual Azeroth.  I know it is an admission of our mutual nerdiness, but that is where I knew you best.  We were both more interested in history, lore, and skill than egotistical gain and that fueled our gossamer bond.  Goodbye, friend, you will be missed.

Winter descends

The leaves have fallen, the flowers are dead.  The air is beginning to chill.  There is a month left until the solstice, but it is already dark by 5pm and the season has switched from transcendental color to monochrome grey.

I miss the pines.  I miss snow draped over cedars.  I miss the sandy crunch of fluffy snow under skis.  I used to ski for hours through the northern forests, but there are no great forests here.  There are no cedars, no pines which were not planted by humans.  This place is grey and domesticated.  Its winters are slush and fluctuating temperatures, naked deciduous trees, gloom, dormant hibernating death.

The grey buries memories of blinding snow.  It destroys hope with an unrelenting, undulating despair.  The winters here are two months under desolate skies.  There are nothing but death and waiting seeds upon the plains.  The leaves drop, the wind blows, and the winter falls heavy with silent gloom and dormancy.

Northern Michigan winters are a far different beast.  They are not cheery, but they are bright, and the whiteness of the earth competes with a blue-grey sky and the snow triumphs.  Even at midnight, the bitter snow is bright.  It reflects the light of the moon, and absent the moon, it mirrors the stars and occasionally the aurora instead.  You can find your way through the forest by the light of the snow and still view the spectacular glory of the Milky Way above.  I used to go stargazing on the most frigid winter nights.  The sky was always clearest then.  The moon would hang resolute above the pines and the aurora would streak kaleidoscopic across the northern sky.  Twigs snapped, owls hooted, and the symphony of life accompanied the brilliant cosmos in an ambient duet.

There is no music in the winter dark in Kansas.  Life hibernates and the few sounds are urban and incidental.  It is dark so early, but the darkness is not illuminated by snow and galaxies.  Instead, city lights muffle the sky, and only the brightest stars and planets are ever visible.  The visible Milky Way is a myth, and any moving lights are planes and helicopters instead of potential UFOs.  Imagination is lost on urbanization.  The beauty of the universe is packaged and boxed and shown only in school texts and television documentaries.

It is not much improved outside of the city.  There are no lights and the stars return, but the plains are desolate and dead.  Trees are scarce, and they are skeletons instead of majestic evergreens.  They die every fall and are reborn in the spring.  Everything does here.  It snows, but not enough, and the snow is gone quickly.  Ice is far more common, and every snowfall is guaranteed to blanket a substantial layer of ice.  The naked trees are weighed down with it and often break.  Broken, tired skeletons, longing for a spring not soon to arrive.  Everything is wet and dirty, tired and depressed.  Snow becomes slush once grounded, slush becomes ice, ice melts to become mud.

I miss the water.  I miss spontaneous hockey games and skiing through the forest at night to find the perfect stargazing spot.  I miss the thick blankets of fluffy snow that last for months at a time.  I cannot go back to those memories.  There is nothing for me in Michigan anymore.  Some family to visit, but there is no future there, only past.  My present is here in Kansas, but my future is to be determined.  For now, I'm trapped between desolate winters and scorching summers.  The unending flatness is my home now and for the foreseeable future.  I gave up beauty for stability.  I do not regret it, but sometimes I miss it terribly.  Sometimes I dream of snow-painted evergreen bows but wake up to bare branches perched on a lonely stretch of ashen earth.  The northern forests call to me, but I can only listen and not respond.  The calls will remain unheeded for now as I prepare myself for another Kansas winter.