Sitting With The News, and a Series of Fortunate Events

This is Rainan Marrow.

Born October 28th 2015 after a triathlon labor whereby we spent 24 hours at home under the full moon in the wood-fired tub and our yurt, another 12 hours at the Brewster hospital laboring and eventually laboring medicated, and in the last half hour, a c-section decided the exact moment this little fellow would emerge into this world, not exactly through the hole I had hoped but a sort of side door the allopathic coyote of childbirth ushered us through.

Rainan has been a very present person even as an unfurling newborn. That cloudy blue newborn eye colour cleared of clouds but maintained a dark hue- unlike the sky blue of his father and maternal grandfather, they are like ripe saskatoon berries in June. When he engages with someone, he has that uncanny ability of very young people to bring out the best in others, inviting them into his comical, soulful, joyful antics.

 He loves exaggeration, physical comedy, intimate ponderings and long wanderings. He is very musical, loves exploring any instrument you put in front of him and has incredible pitch (which he exercises with everything from song to phone dials, blenders, echoing gunshots, car motors, etc.) He knows books are magic, and loves to singsong incantations divined from those images right back to you. He is a promising hunter-gatherer, recognizing berry bushes from afar and deeply curious about animal slaughter and meat processing.

Rainan was born into an unconventional family and has thus far shown to be game for the life we offer him. In fact we often laugh at how he's so down with the Bigger Vision, he keeps us in line when we get distracted. He thrives out with our horses in the valleys, foothills and mountains of our bio-region hiking, camping, wild harvesting and tending, exploring and connecting with the wilds.

He voraciously communes with animals as we do, learning about them from living being to prone carcass, from fur to marrow, skin to leather, flesh to food. Since the sprouting of his first tooth he has set to chomping the flesh of any and all beasties, drank blood, chomped eyeballs, gnawed bones and slurped marrow.

As we have gotten to know the amazing being manifest in flesh and bone as our son, born of our hopes and dreams, we have shared the feeling of blessedness and certainty that our prayers have been answered, here is a child who can appreciate the life we live, love the earth and all her children deeply, and learn to live in a way that is harmonious, joyful and in right relation.

My name is Epona Rose, and it was through my body that that sneaky secret passageway was sliced to pull through this cosmic creature we took four months to name Rainan Marrow. His papa's name is Alexander. Though from this blog's title anyone happening upon it could venture to guess that the series of events which inspired its creation have not exactly been fortunate, I would like to begin with the fortunate, the blessed, the blissful beginnings:

~a wonderful, beautiful, sexy, magical pregnancy

~the opportunity despite certain medical concerns to labor at home, and give it my all, earning me the grace of meeting the goddess full-on and meeting my most powerful self embodied

~a quiet, warm, peaceful winter with the gentlest, easiest newborn a mama could ask for who developed in good health, latched easily from the first, never lost but 4 ounces in the beginning and gained steadily into a cheeky chunker

~a solid year without any real sickness or worry, until the mantra "he's just a large-headed, chunky, flopsy baby" no longer held at bay concerns about his not crawling, not even bearing weight on his legs, and we finally went to the doctors, beginning the road to diagnoss

  ~and still, grateful for another three months diagnosis-free, one of which we spent as a family in Montana with some of our most beloved friends assisting the wild buffalo hunt, eating really good food, making music, cavorting with sparkledy aunties and uncles, taking long walks in Paradise Valley, all the while both knowing that month to be a blessed limbo between genetic testing and results, blissful ignorance and whatever may lay ahead.

 ~I am so grateful for 15 months with my son before that phone call.

And then last week, the phone call.
So sorry to have to tell you this.
The charge.
Spinal Muscular Atrophy.
And within three months we have gone from being able to hope our baby was just taking his sweet time, to thinking he may not walk but we could manage, to reading on Wikipedia that he could be dead within the year.
The doctors at Seattle Children's Hospital wanted us to drive over there three days after that initial phone call, one day after we had gotten home from Montana, and I told them that if it makes little difference, if he has an incurable, progressive disease, then we could wait another week to come in and needed time to sit with this news.

So this is the Sitting With The News Time.

I know that some of our friends and even family will find out about this through this blog, and I hope you will forgive us if it hurts to learn about this other than from our mouths. Its just that it feels farcical to endure phone call after phone call, albeit with well-intentioned supportive people, because at some point you begin to feel like you are helping everyone else process their emotions instead of processing your own.

Spinal Muscular Atrophy, forevermore referred to as SMA, has an exceptionally bad rap, being the number one genetic killer of children under 2 years of age, presently/legally/officially/popularly incurable, until three months ago officially/legally untreatable, progressive (meaning in the backwards language of modern medicine, ever-worsening) and just unbearably fucking sad to live with disease. Borrowing from an SMA support website:

Spinal Muscular Atrophy (SMA) is one of the neuromuscular diseases. Muscles weaken and waste away (atrophy) due to degeneration of anterior horn cells or motor neurons which are nerve cells in the spinal cord. Normally, these motor neurons relay signals, which they receive from the brain, to the muscle cells. When these neurons fail to function, the muscles deteriorate. SMA effects the voluntary muscles for activities such as crawling, walking, head and neck control and swallowing.

 SMA mainly affects the proximal muscles, or in other words the muscles closest to the trunk of the body. Weakness in the legs is generally greater than weakness in the arms. Some abnormal movements of the tongue, called tongue fasciculation's may be present in patients with Type I and some patients with Type II. The brain and the sensory nerves (that allow us to feel sensations such as touch, temperature, pain etc.) are not affected. Intelligence is normal.  In fact it is often observed that patients with SMA are unusually bright and sociable.

Type 1 Severe Infantile SMA, or Werdnig-Hoffman disease

• Infantile spinal muscular atrophy (Werdnig-Hoffman disease) is the most severe form of SMA. It usually becomes evident in the first six months of life. The child is unable to roll or sit unsupported, and the severe muscle weakness eventually causes feeing and breathing problems. There is a general weakness in the intercostals and accessory respiratory muscles (the muscles situated between the ribs). The chest may appear concave due to the diaphragmatic breathing.  These children usually do not live beyond about 24 months of age.

Type 2 Intermediate type (this does not have a hyperlink so it is spelled out below instead.)

What are the features of intermediate (type 2) SMA?

A child with the intermediate form of SMA often reaches six to twelve months of age, sometimes later, and learns to sit unsupported, before symptoms are noticed. Weakness of the muscles in the legs and trunk develops and this makes it difficult for the child to crawl properly or to walk normally, if at all. Weakness in the muscles of the arms occurs as well although this is not as severe as in the legs. Usually the muscles used in chewing and swallowing are not significantly affected early on. The muscles of the chest wall are affected, causing poor breathing function. Parents notice that the child is "floppy" or limp, the medical term for this being hypotonia.  Tongue fasciculations are less often found in children with Type II but a fine tremor in the outstretched fingers is common. Children with Type II are also diaphragmatic breathers.  Physical growth continues at a normal pace and, most importantly, mental functions is not affected. The children are bright and alert and it is important that they receive all the available opportunities to develop their intellectual capacities to their fullest extent. Integration into a normal school environment gives them the best chance to mature intellectually and emotionally.

The course of the disease is quite variable, and difficult to precisely predict from the start.  Children with the intermediate form of SMA usually sit unsupported. Weakness of the legs and trunk usually, but not always, holds the child back from standing and walking alone. Sometimes the muscle weakness can seem to be non-progressive, but in most cases weakness and disability will increase over many years. Severe illness with prolonged periods of relative immobility, putting on excessive weight or growth spurts may contribute to deterioration in function.  Due to weakness of the muscles supporting the bones of the spinal column, scoliosis (curvature of the spine) often develops in children who are wheelchair bound. If this becomes severe it can cause discomfort and can have a bad influence on breathing function as well. An operation can be done to straighten the spine and prevent further deterioration.  Recurrent chest infections may occur, because of decreased respiratory function and difficulty in coughing. Parents will have been shown how to encourage their child to maintain his/her maximum respiratory function as well as how they can perform postural drainage of the chest. They should start this as the first sign of any chest problem. Antibiotics and inhalation therapy may also be needed. Sometimes hospitalization is required to best manage and care for the child.  The long term outlook depends mainly on the severity of weakness of the muscles of the chest wall and on the development of scoliosis. Lifespan is always difficult to predict. Mildly affected children may live into adult years. The more severely affected children may die, due to pneumonia and other chest problems, before or in their teens.

 

We are the Heathen Family, and we have begun initiation into the Magic of Tragic.