Arev

She was a helpless onlooker to a world of intravenous tubes and monitors, but at the very centre of this detached world was her living baby, clinging to life. When the reality of every waking minute is living in a torturous unwelcome nightmare, when the conscious mind starts to rapidly unravel towards deep depression near insanity or an unhealthy tiredness pervades the subconscious. Unsuccessfully, searching for a brief respite; a safe island from the tempestuous stormy seas of a living hell on so many chaotic levels. Unfortunately, there are no pauses from the harsh realities of the traumatic circumstance, it is constant struggle; living in a nightmare where invading insanity overwhelms and imprisons the feeble mind. Where the present and the future conspire to strangle normal healthy positive thoughts and feelings of life, leaving behind the canker of nightmare visions with waves upon waves of anxiousness consume any remaining rational thoughts. Bringing a paralysis of spirit, and an unshakable depression of the mind.

Her newborn baby lay lifeless in the incubator, on a life support system that had prevented the premature birth from being a tragic still born fatality. Hanging by a slender thread of life, her premature baby had only spent 24 weeks in her safe womb, was now living in an unsafe world in an extreme critical condition. Her precious baby had breathing problems, as her tiny lungs are not fully developed, with a constant threat of apnea. Her premature baby also had heart problems, brain problems, as the body was not fully formed, and a constant problem with temperature control of her tiny body, where hypothermia will occur without support from the surrounding apparatus.

There were digestive problems and blood problems caused by low red blood cells which caused jaundice and anemia, with the outward indicators of the yellowing of skin and eyes. Metabolism problems caused by low levels of sugar and converting any stored sugar to active forms of blood sugar. During this delicate and fragile period of prematurity, her immune system didn’t perform and again needs to be supported.

The small human form needed a constant and comprehensive system of support to keep it alive and functioning. The mother was helpless watching on and praying for a miracle beyond birth – life after birth. It was a living nightmare.

Premature birth is the saddest paradox of all; where a new life should be celebrated, and yet the untimely arrival from the protection of the mother’s womb creates a nightmare of gigantic proportions. Paradoxically, the birth mother’s feelings are confused, tangled and fragile. Her own body was unable to support the complete gestation period, yet her maternal instincts, her spiritual loving care is without limits. Giving birth, and placing the newborn into danger, and yet feeling pangs of guilt, and the insane reasoning why her child, her essence has been placed into such critical danger.

Endless anxiousness and concern.

The doctors and nurses knew the probabilities of survival were low, only the stubborn spirited ones survived the ordeal. The mathematical probabilities were low, and therefore all were very careful in the counseling of the bereft mother, who was alone in her nightmare world, as neither her mother nor her partner could placate her personal world of horror, nothing could console her.

She had not lost yet, but the fear of losing is sometimes worse than the inevitable. But, in this conscious state of ephialtes, a type of madness, she found solace in her faith. Wringing her hands until the joints whitening with the lack of blood, and the tightening, the clenching of her locked hands went unnoticed compared to the psychological pain in her anxious state of mind.

Sometimes coming so close to the edge and looking over the precipice to the dark shadows below is far worse than lost itself. Lost has its finality, where near lost can linger in the shadows, with longer term harm.

Arev eventually survived, she was the stubborn one percentile. The double miracle of birth, a premature birth, and then the artificial supported survival in those early fragile days. The mother’s prayers were answered, it was yet another beginning, another birth; birth and validation of her faith. A promise to be loyal to the creator of creators. A creator of things beyond the physical, this was a promise by a relieved mother to the mythical protector, certainly the protector of her precious daughter – named Arev.

The story continues of the endless love of a caring mother, still forever carrying the secret burden and worries of those early nightmarish days. A scare, yet the shadows of lost remained. The enduring stain of those feelings of near lost, those gnawing feelings of guilt, helplessness, thinking Arev was lost to death at birth, and then the overwhelming relief and happiness of knowing Arev would live. A miracle, her prayers answered, an unspoken request answered by the mythical creator. The warm feeling of thankfulness.

When Arev arrived home from constant monitoring and support at the hospital the consequences of the premature birth were not over, like many events in life it was the end of the beginning, but the start of a new chapter in Arev’s miracle life.

Most premature infants are more likely to develop behavioural issues, such as ADHD and anxiety disorders are naming a few. These issues may have significant long-term repercussions, including poor academic performance and social isolation. Compared to normal born infants, premature infants are more likely to struggle academically. These difficulties did persist in Arev’s childhood and would negatively impact on her potential employment opportunities and overall quality of life.

The relief of Arev’s mother that her prayers had been answered, had now been replaced by the knowledge that Arev would suffer from irreparable damage; Arev would suffer from infantilism for the rest of her life.

Some things have been lost, lost forever, and yet if one searches deep into a child suffering from infantilism one can discover something special. Disadvantaged either physically or mentally from the beginning, prevented from leading a full life without supporting mechanisms doesn’t mean a dull unfulfilled life. Just like the incubator in those early days; artificially compensating for weaknesses, support continues with the understanding, the awareness of Arev’s disadvantages. This continued support network is equal to the compensation of protective hospital incubator in the first days of her existence. The continued monitoring of her mother afterwards, through childhood and adult life will maximize Arev’s potential.

Infantilism is not limited to cerebral underdevelopment, based on premature births. It also affects the possible development of many other physical organs besides and can cause chronic conditions and multimorbidity. Any organ system development is at risk during the critical stages of pre-term birth; lungs, kidneys, brain, and heart, and the underdevelopment lasts forever.

In Arev’s unique and special situation, her body outwardly grew appropriately with her age, but her mental age remained behind her physical growth. Certain organs in her body needed continual care and medication. No one outside the close family would be aware of Arev’s infantilism. Certain situations required continued specialist care. In those early days up to the age of five, the preschool years constant visits to specialist doctors occurred, but the challenge of the school years was yet to come.

When I first met Arev, my first clue or indication of Arev’s infantilism was her outward obsessive behaviour. She had difficulties to engage socially. Not just with other children, but with adults. She focused on certain subjects and was incapable of understanding that discourse was a two-way process, her listening skills in a conversation mode were lacking. Unable to listen, or absorb information from a conversation, and subsequently not reacting to the flow of the conversation, created awkward pauses or feeling of rudeness. Arev conversed on one subject only, her favourite topic, and did not or could not change topics other than the topic she was fixated upon.

An important part of the affliction of the disease of infantilism is understanding. Ignorance in this case creates an unsympathetic attitude. For all intents and purposes, the person looks perfect. No one would know how much pain and suffering the person has already been subjected to, and only the awkwardness in casual social interaction would alert one that something was not quite right.

In Arev’s case, social interaction is important as she grows into adulthood. It is a confidence booster. In the privacy of the home many traits of infantilism are dealt with daily by her mother. Outward forms of depression, and lapses in basic discipline can be attributed to incorrect levels of medication. It becomes an endless and thankless task, which only a loving caring mother would consider unburdensome.

Vanishing under the table during a restaurant meal, because the mealtime conversation becomes boring. Taking the pet dog to bed because Arev continues to fear the dark. Arev has many fears and are outward indicators of her infantilism. But only her loving mother knows when Arev is using the disease as an excuse to avoid tasks based on her laziness, and not because of the disease. A mother knows and can separate Arev’s disease from her bad habits or bad character traits such as greed and selfishness.

The care for Arev is endless, and only her mother daily counts the losses against the discoveries.