[caption id="attachment_2019" align="alignnone" width="214" caption="Photo by Stephanie Parnell"]
When Sandy Palo was doing her practice teaching in the early 1970s, she worked in both the kindergarten and first grade classrooms. “Between these two was the special ed classroom. I remember that teacher begging me to come and observe but I was frightened of those kids and I did not go in.” Years later she and her husband Gerry, also a teacher, were expecting their second child. There were no complications during the pregnancy and the family was anticipating the birth of a healthy baby girl. When inexperience played into some fundamental mistakes during the delivery, the results became life changing for their daughter Missy and family.
As the Palos look back at the past 36 years with Missy, they compare many of the emotions they experienced to the poem Welcome to Holland
by Emily Perl Kingsley. Although they were, as the poem says, “planning a trip to Italy,” Missy’s life, was more like “landing in Holland instead” and has impacted the lives of her family in ways they could never have expected.
Planning a Fabulous Trip – to Italy
On September 29, 1975, Sandy called her husband at the school to let him know her water broke. He took her to the hospital but as the morning progressed, the labor didn’t. After discovering that the baby was in a frank breech position (the baby’s bottom was coming first and her legs were flexed at the hip and extended at the knees), the nurse told Sandy and Gerry the delivery would take a while and to expect waiting at least another 12 hours. “With maturity and hind-sight, we would have never waited and would have questioned the doctor’s decision to let me deliver vaginally. But such is hind-sight. Gerry and I were young, trusting parents,” Sandy says.
A new nurse came on for the afternoon shift. “We would later learn that this was her first shift on duty alone, just completing her orientation with the hospital. She had never been solely responsible as the nurse on duty with a frank breech delivery.” Two hours later the contractions had increased in duration and frequency and Sandy was growing tired. They requested pain medication and when the nurse returned to administer the shot, she saw that the baby was already delivering.
Sandy was quickly taken to the delivery room. “Gerry assisted with keeping me focused, helping me with breathing and pushing. The nurse was able to deliver the baby’s bottom, legs and chest fairly easily, then one shoulder, then the other.” With the baby’s body and bottom of her face delivered, the head became stuck. “Missy’s head, around the eyes and bridge of the nose and around the back of the head was stuck. The nurse repeatedly lifted her body up, suctioning her while the ob nurse pushed down on my abdomen. After the third time of lifting the baby’s body up, I tore and the rest of Missy’s body came out,” Sandy remembers. Melissa Michele Palo was born at 5:36 pm and weighed eight pounds two ounces.
“We learned later that there is a particular maneuver to be used when the baby’s head is stuck as Missy’s was. It’s a safer, much easier delivery for the baby,” Sandy says. After the traumatic delivery, Missy’s color was black-purple and she wasn’t breathing. “I remember the delivery nurse patting Missy’s back saying, ‘breathe, baby, breathe’ over and over again.” Gerry and Sandy’s audible prayers in the delivery room were answered: Missy finally breathed and cried out. “We were praising God that she was alive and breathing.”
Change in Flight Plan
The doctor arrived after Missy was delivered. During the following days in the hospital, there were many red flags to alert medical staff to problems. Missy had difficulty sucking and waking up to eat. “I remember the nurses bringing her into my room and unwrapping her, holding her in the sunlight and flicking the bottoms of her feet to attempt to wake her so I could feed her.” Also by Friday of that week Sandy remembers noticing that Missy’s fontanel felt more firm that her daughter Stacy’s had been. “I was beginning to feel like a silly, nervous mommy.”
Although Missy lost more of her birth weight than typically allowed at discharge, she was sent home on Saturday. “Once home, Missy wasn’t eating. By late Saturday night, I was becoming frantic. After learning our doctor was out of town and then being told to wait to bring Missy into the ER, we called the other clinic in town,” Sandy remembers. They were told to come in right away. “Her tummy was concaved, she was dehydrated, fontanel was bulging and her body temp was low.” Missy was put on an IV and by noon on Sunday, she was airlifted to the Neonatal Intensive Care Unit (NICU) at the University of Minnesota Hospital. In the ER, prior to the flight, the NICU doctor did a spinal tap and discovered blood in the spinal fluid: a sign of a bleed in the brain. “At some point during the flight Missy stopped breathing and they had to bag her. I’m so thankful I was unaware of this until we arrived at the hospital. God was protecting me, knowing my earthly support, Gerry, was below, driving in his 67 Mustang.”
When the couple arrived at the airport, they found out that the U of M Hospital was full and they were transferred to the NICU at Hennepin County General Hospital. Although the Palos had reservations about the change of plans, the transfer turned out to be a blessing in disguise. Sandy’s sister, Donna, was in her fifth year of college training at Hennepin County General Hospital to become a medical technologist. Not only did Donna have many contacts in the hospital, she had a dorm room available for Sandy to stay in. The couple also discovered that the NICU there was considered “state of the art.”
Landing in Holland
Missy was a patient in the NICU for five weeks. “During this time we would watch with God’s strength supporting us as Missy had countless procedures done to save her life as well as solve the mystery of what had happened to cause all this,” Sandy says. She had intense swelling in her brain and hydrocephalus set in. To relieve the pressure within the brain, a ventricular peritoneal shunt was put in. “God had to be cradling her little head.”
After neurosurgeons put in the shunt, the Palos saw some immediate improvements. However after several days, some negative neurological symptoms were still present and the doctors realized there was either a mass/tumor within the brain, an artery-vein malformation or a blood clot. “They prepared us for the worse,” Sandy remembers. “After surgery, the neurosurgeon told us he had removed a blood clot the size of a small lemon from her brain.” The traumatic delivery had caused a bleed in the brain, resulting in a blood clot which caused hydrocephalus which, in turn, would be the cause of her brain damage.
While Missy was in the hospital, Gerry was home teaching, coming to the hospital for major procedures and her older sister Stacy stayed with her grandparents in Windom, Minnesota. “Stacy still recalls kneeling by her grandma’s couch praying for Missy.”
Prior to discharge one of the neonatal doctors counseled Gerry and Sandy to take Missy home and just love her. “He had no guarantees regarding her future.” The Palos were told Missy could possibly be a very irritable baby and child due to the areas of the brain that had been damaged. Thankfully, that wasn’t the case. “She is a very happy, sociable young lady with a wonderful sense of humor.”
After five weeks in the hospital, Missy came home on November 11, 1975. “It was wonderful to get back into a normal routine and to feel like a complete family again. God granted us a year to heal and recover before the next crisis hit.”
New Guide Books
During a routine checkup the following October, doctors discovered that her shunt wasn’t working properly and needed to be replaced. Missy was hospitalized for two weeks for the procedure. “Then, the night before Thanksgiving, after watching Missy slowly lose ground, we returned to the hospital to find she had meningitis.” The shunt had become infected and the Palos would make the Pediatric Intensive Care Unit their home for the next five weeks.
Missy was in the hospital until early January. “That was a long, difficult stay for all of us. During this stay, Stacy stayed with friends but it was difficult for her.” She was in kindergarten and needed her family and home and some stability. Missy was only home for a short time before returning to the hospital in February because the shunt leaked and did not pump properly. After ten days in the hospital, Missy returned home. It was the last lengthy hospital stay until years later when orthopedic surgeries were needed. “I am ever thankful that Missy’s last shunting in 1977 has lasted.”
Learning a New Language
The first two years of Missy’s life were difficult for the entire family. “There were no guarantees regarding her mental capabilities due to the damage,” Sandy says. “Missy’s life from then on was a continual progression of improvement.” The ultimate damage was done to Missy’s cognitive skills: math and reading and her physical ability. “She had typical, mild, cerebral palsy initially; she had trouble with walking and stumbling as her left side didn’t work well because most of the damage happened to the right side of the brain.” While some of her cognitive skills were adversely affected, her personality was not. Sandy describes her daughter as sweet, compassionate and kind. “That was wonderful! That was what the doctors thought would be a real problem for her.”
When Missy was two, Sandy accompanied her to the early childhood special education classes in the afternoon. “Schooling back then didn’t begin until the child was three. Now their schooling goes from birth to age 22.” When she was three, Missy started going every morning. “I sent her on a school van. That was petrifying to me even though I knew we were sending her to a safe place. It was terribly difficult to hand her care over to others but we knew she would need an extra boost of support to become all that she could.”
The Palos are grateful for the excellent resources the school system was able to provide for their daughter. She was able to meet regularly with physical and occupation therapists and speech clinicians. “Missy was in the Cadillac of the school system – everything was available and open. That didn’t change until her high school years when schools were cutting back.” In 1994 Missy graduated from Little Falls High School.
In 1995 Missy’s doctors had exhausted most procedures to try to enable her to walk better. “A new procedure came along and the doctor felt it would benefit her gait. They would inject Botox into the muscles in her left hip and thigh to help them relax. Instead, the Botox went systemic and affected most of Missy’s motor skills both fine and gross,” Sandy says. Most of the effects went away after several months but she was unable to walk again. “This was the first time we saw depression in Missy. It took many months struggling with her question, ‘Why did God let this happen to me?’ – a question we also had to struggle with.” Acceptance did finally come. Because of the loss of her ability to walk, Missy has since worked her way through several wheelchairs and recently got one that allows her to stand and move at the same time.
In Holland You Must Stay
Today, 36-year-old Missy lives at home with her parents. While her care is primarily Gerry and Sandy’s responsibility, different agencies also help. “One agency comes in three times a week to give her a bath and work on range of motion, doing exercises with her for several hours a day.” Another agency takes her out for socializing or volunteering, “She calls it ‘work’ at the local elementary school where she volunteers in the second grade classroom. The teacher has been phenomenal at incorporating Missy in as an ‘aid’. She has the second graders read or do flash cards with Missy. She also helps in the office.”
Missy’s sister, Stacy, is married and has seven children. Her family lives nearby which offers the Palos a built-in support system. “Our daughter Stacy and her husband are always willing to give us respite care. Our oldest grandchildren are willing to spend time with Missy playing games, doing puzzles and watching movies. Missy’s pretty easy to be with, she’s quite independent – she just cannot be home alone for long periods of time.”
“There are more of us parents out there that are raising children with disabilities than one realizes. When it first hits you, what you’re going to have to deal with the rest of your life, you feel so alone because, typically, you haven’t been exposed to it.” Harking back to her years in practice teaching and how she avoided the special ed room, Sandy says, “I think there are so many people in the general public that are afraid of people with disabilities. Just because it’s an awkward situation, you don’t know what to say; don’t want to look at them for fear of staring. So when it happens to you, you feel really isolated.”
Thankfully the Palos were able to meet other parents of children with disabilities. “We found there were many people like us. We started a support group of 10-12 couples and we came to realize we needed each other. Especially those people who have walked that road ahead of you.”
Discovering the Beauty of Holland
Although Missy’s life has been wrought with health crisis and challenges, the Palos say God carried them through. “God has been faithful in walking along side of us and ahead of us too. You don’t always realize it when you’re in it but when you look back, you can see how He arranged it all. Lots of things God had arranged that we didn’t realize at the time because we had a lot of fear and anxiety in our hearts.”
Missy’s sweet personality and content nature has impacted the entire family. “It’s been a ripple effect, not just the mom and dad are touched by a child with a disability. Missy’s younger sister Lexie is a social worker at a high school working with kids who have disabilities. Also, when my mom started looking for a job a few years after Missy was born, she became an aid in a special ed classroom. As for the youngest grandchildren, they’re used to someone with a disability around and are very accepting. It’s wonderful to see.”
“I think the poem Welcome to Holland
says it really well. Although we were all packed and ready to tour Italy, we landed in Holland. That’s about what it’s like when this happens to a family. You’re going into the hospital expecting another normal child and you come out of the situation realizing you have a whole lot of stuff to learn. Beautiful stuff,” she says. “There is no way we could have learned what we have learned through book knowledge or watching somebody else do it. Missy opened up a whole other world to us. This world of raising a child with disabilities is filled with new medical, educational and social service jargon. And, with patience, we have been able to learn it!”
“We have met wonderful doctors, neurologists, neurosurgeons, orthopedic surgeons and their support staff. When thinking of one of Missy's first special education teachers, tears come to our eyes remembering her dedication. The different people coming into our home to assist Missy have become like family to us. We have been so blessed by these people we have met in ‘Holland’ – people we would never have had the opportunity to meet without Missy. We would have been unaware of peoples' empathy and compassion in such situations. We would never have known the value of having prayer warriors in your life and the support you receive because of their prayers.”
“And Missy, there are no words to describe her precious, sweet spirit. She has caused us to look at life from a much different perspective...and it's good!” Gerry and Sandy’s journey with Missy has strengthened their faith and resolve. “It has caused a growth in faith that happens only when you see God's faithfulness in taking the tough journey with you. This ‘trip to Holland’ is much like most other trips you might take. There are wonderful, exhilarating days and there are days of weary, exhaustion. But, the days I'm tired, I'll see her smiling face or hear her say, ‘Can I help you, Mom?’ and know ‘Holland’ isn't so bad, it's just different!”
To read the poem Welcome to Holland by Emily Perl Kingsley, click here.