"So what do you do for a living?"
The person asking is a young man, one of several young, childless professional couples seated at our table for a formal fundraising Christmas dinner. I don't want to get into this, but am left no choice. I answer with hesitation.
"I am a stay at home caregiver for my twin daughters, one of whom is severely disabled." This answer, I know, will stop this unsuspecting young man in his tracks, as it always does. I'm right - my answer meets with stunned silence. He is unable to comprehend the complexity, grief, exhaustion and yes, even pride for which I have survived my last 14 years. His professional world consists of business dealings and stock options. My professional world now consists of physician visits, therapists, brace and wheelchair fittings, seizures, medications, school meetings, training caregivers, insurance paperwork and becoming an expert "hoop jumper" in the social service system. Its hard to even remember living a "normal life" when I did not know of things like neonatal intensive care units, Baby Doe laws, medical ethics, brain damage and parenting children with disabilities - but yes, there was a time when I too, would have been the one silenced by the honesty of a family caregiver.
April 26, 1986, the day the Chernobyl nuclear reactor meltdown occurred. In a delivery room in rural Wisconsin, a meltdown of life as I knew it was also occurring. Our biggest life thrill of becoming parents of twins was now turning into our unimaginable nightmare as Erin Amanda, scheduled to arrived in August with her twin sister, Jessica, was born nearly four months early, weighing in at one pound, eight and one-half ounces. She was not breathing, was limp and virtually lifeless, with only a faint heartbeat audible. On the apgar scale - the scale used to assess the health of a newborn, she scored a one, with 10 being the best score usually given to full term, healthy infants. The neonatal intensive care unit (NICU) staff was present during the delivery and they were furiously working to intubate Erin. It took several minutes. Once the respirator was in place, she was whisked off to the NICU before I was even allowed a chance to see her. I could not understand what was happening and why they were forcing this child onto mechanical means that would sustain her existence and prolong her agony. The terror of the moment was overwhelming. What would her life be like. . .if she somehow managed to LIVE? What would ours be like? The terror of thinking of her living was more powerful than of her dying, which we had already begun, in many respects, to accept. An hour later, a gruff-looking nurse came into my room to tell us that Erin was stable. A priest had been in to baptize her at our request. We were told that she had a long road ahead, but that she was holding her own, and for now, things were looking quite good. This was short-lived. Two days later, Erin sustained a massive brain hemorrhage common in extremely preterm infants. The hemorrhage caused extensive damage throughout her brain. I was allowed to see her during her 2nd day of life - because she was not expected to survive the night. Her heart had stopped repeatedly throughout this night, and heroic medical measures continued to bring her back from the brink. At 3AM, I was awakened and my hospital bed and IV pole were wheeled into the NICU so that I could see and touch Erin for both the first and last time. I stroked her tiny body through the portholes of her plastic isolette, while thinking "please God, take this child home." The next day, with her still clinging to life, my husband and I were allowed to hold her outside of her isolette and to say good-bye as the last rights blessing was given. A funeral was being planned that I would not attend. I would not allow myself to cry because of the fear that I may never stop, and there was another little one to focus on saving. My mission became bringing at least one through if we could not have two.
Shortly following Erin's delivery, the contractions were stopped with powerful muscle relaxants in hopes that I could carry Erin's twin, Jessica, to term. The radical procedure did work for a short time. We had hoped for several more months of growth for Jessica, but the months were narrowed to days. One week and one day after Erin's birth, Jessica also arrived, this time, an emergency C-section was done after her heart-rate plummeted on the fetal monitor. Jessica weighed in at one pound, eleven ounces. Although she only weighed 3 ounces more than her sister, the extra 8 days in utero and the stress on her body systems from Erin's delivery helped her to mature at a quicker pace. Her oxygen requirements and respirator assistance was quickly reduced as she proved her strength. Her neonatal course was quite stable - the usual milder preemie complications came and went, and she was released three months later without any medications and without an at-home apnea monitor. All looked extremely promising for a normal future.
Erin did somehow manage to survive; however, she sustained the most serious of complications. She was hospitalized for 5 months and had numerous surgeries including the placement of a temporary shunt in her brain. Unknown to us at the time, this procedure was done without anesthesia, a common occurrence in neonatal units up until the late 1980s due to the unfounded belief that preemies' brains were too immature to process pain. Erin arrived home still being gavage tube fed - a method of feeding which meant that a tube was inserted down her throat and into her stomach, something we learned to do quite proficiently. Upon discharge, she was on 8 different medications, totaling 25 doses per day. She cried incessantly. Living in a rural area and away from our parents meant that we were unable to find any nursing care or even adequate family help for relief the first several months after the girls arrived home. It was constant 24 hour, 7 day a week care provided by my husband and I - but mostly the caregiving duties were on me due to his 6 day a week work schedule. The only breaks were on weekends when the grandparents came in to sit with the girls while I slept. The exhaustion and stress were incomprehensible.
As Erin grew, her acute medical needs began to subside somewhat. Within 2 months of being discharged, she began to take bottle feedings - agonizingly slow feedings, but feedings nonetheless. The medications also were slowly reduced and then cut completely. However, we were becoming aware of other limitations. She did not react to her surroundings as her sister did, and we were faced with the fact that she had significant visual limitations when she did not turn her head from direct sunlight. At one year of age, Erin was also diagnosed with severe cerebral palsy and profound mental retardation due to the brain hemorrhage that had occurred after her birth. At two years of age, she began to have life-threatening, grand mal seizures. At four years of age, she began to go into puberty - another manifestation of damage to part of the brain that controls the endocrine system. Jessica was diagnosed with mild cerebral palsy at age 3 most likely due to the fetal heart decelerations causing mild damage to the area of the brain that controls motor function. Jessica walks without the aid of braces or a walker, but has a mild gait abnormality. Fortunately, she has been tested in the above normal range cognitively, and in most ways is a wonderfully typical High School freshman.
September 2000: The tears are welling up in my eyes despite my best efforts of trying to contain them. Erin's case manager and I are walking through a private institution 200 miles from my home, supposedly a top notch facility for the care of adults with disabilities. We have just left the "severe" room - the room where quite possibly someday Erin will also reside along with her roommates who are in various sprawled and fetal positions in recliners in this noiseless room. I note the cracked and peeling paint on the corridor walls and think of how different this world is in comparison to the glitzy, high-tech, multimillion dollar neonatal nursery that insisted Erin be saved - saved for what, I can't help thinking. This? To end up here like this? We walk on - we are shown the chapel on this tour - the director happily chats about masses that are held here and that the residents can attend. I can't help but laugh to myself, thinking that if anyone has a straight shot to heaven, it's these residents - why should they EVER have to attend mass? Their penance of living like this must have absolved millions of us sinners by now. I manage a secret prayer - Please God, don't let me have to make the decision to place my beloved child here. My sweet child who will forever live in her world of infancy. How does any parent survive placing their child in a place like this? But I know the reality of care for the disabled, and I know that I need to plan for the future - 3 ½ years away when Erin reaches 18 and her father no longer is required to pay support for his children. Yes, my marriage like 85% of those in my situation, crumbled under the weight of too much caregiving with too little help.
The institution visit brought up many thoughts and emotions that have traveled through my mind during these past years. Why do we celebrate the miracle baby stories that frequent the media while ignoring the needs of multitudes of survivors with disabilities - and their families? One neonatologist in an issue of Pediatrics admitted that neonatologists have publicly glorified their successes while minimizing their failures. In other words, the hospitals with neonatal units work hard at making it LOOK like all preemies will go on to live wonderfully normal lives in the homes of exceedingly grateful families to justify the millions spent on the care of neonates. Rarely is it mentioned in these articles that prematurity is THE number one cause of both death and disability in the newborn period. Or that most infants born at the gestational age of my children will survive with significant disabilities and ongoing medical concerns, due, in fact, to neonatal care. The numbers of children like Erin are skyrocketing. A major reason is the Pro-life movement which forced the enactment of the federal Baby Doe laws in the early 1980s, requiring that virtually all infants, regardless of the wishes of the parents, must be medically supported. Ironically while at the same time this law was enacted, the Reagan administration was working hard to freeze and abolish many programs that supported the disabled.
I no longer consider myself to be a religious person, per se, but certainly spiritual. Anyone who has been in a caregiving experience regardless of the circumstances they face, questions why. . .why this is happening to this person you love, why this is happening to me. I had read a very profound book several years back called "Embraced By The Light" which was the author's telling of her personal near-death experience and the knowledge she gained while on the "other" side. One moving passage from the book, discusses why there is human suffering. The author claims it is because in the spiritual realm, before we are born, our spirit CHOOSES the life we will live. The more difficult the life, the more quickly the spirit advances when the earthly life is finished. This has brought me great comfort in several respects. If this is true, Erin has chosen this life she now lives, and I have chosen to be her mother. This is not to say that there aren't many times when I feel that the world is horribly unfair, grueling, painful - for her, for me, for us. It is human nature to have these emotions.
There are times too, when I think the world would be a better place if everyone were to have a child as challenging, as well as appreciative of the simple things in life as Erin is. I will never tire of her "last blast" - that short time before she falls asleep at night when she is at her peak of silliness and happiness; of her fascination of hearing the birds singing in spring; of her greeting me with an exhuberant "MA MA!!" her one absolutely clear word, when I walk in the door after being gone for a few hours; her love of having books read to her, her favorite music - Melissa Etheridge, Neil Young, Eric Clapton; blowing kisses at anyone she wants attention from; her leaning up against my face with her nose and sniffing (sniffy kisses); and, snuggling with her favorite blanket while being held on my lap.
The experience I have had as a caregiver, has focused me in ways that I can't imagine would have happened otherwise. I know what is important in life and have been fortunate to have learned this at a very young age. I have learned of the intensity of love, of sadness and yes, truly, of happiness also..