“I know you’re an adult now and I shouldn’t drag you to things anymore, but I’m dragging you to this. I think it’s important,” Mom said.
It was October 2011 and I was complaining because I had just found out that Mom, Grandma and I would be going to a grand opening event for Vision Forward. This organization, formerly known as the Badger Association for the Blind, is a nonprofit that primarily provided services like technology training, Orientation and Mobility training, and social opportunities to blind adults. The name change to Vision Forward was only part of the organization’s restructuring. The other part was a decision to merge with the Center for Blind and Visually Impaired Children, so that the blind and visually impaired in the community could come to one organization for all the services they would need their whole lives. The facility that this organization was headquartered in underwent major renovation to accommodate this consolidation and it was this grand opening to showcase these renovations that Mom wanted me to attend.
Don’t get me wrong. I was extremely grateful for all of the services I received from both the Badger Association and the Center for Blind and Visually Impaired Children. But I had been to grand openings before and figured this celebration would just entail having to listen to big donors and executive directors giving boring speeches, and I was a busy college student who didn’t have time for such things.
On that day, there were some boring speeches, but all was forgotten when we entered the newly added wing that would house the children’s services.
“There’s Erica!” Mom exclaimed as we entered the room.
“Hi Erica, do you remember who we are?” Mom said. Erica, the social worker for the Center for Blind and Visually Impaired Children, is also blind.
Erica remembered us as if she had worked with me only yesterday, and wrapped me and my mom in a hug.
“You’re all grown up,” she exclaimed referring to me, “you’re in college now, right?”
I told her I was and she was genuinely thrilled to see I had done so well since I was that little kid in her program. And then she proceeded to give us a walk down memory lane.
Mom showed me a little cubby for babies to lay in that had objects like plates, spoons and string that would dangle above them to foster sensory experiences. Mom said I laid in that very cubby, and Erica said it is still used today.
She introduced me to Carmen and Janet, two other teachers I had who were still there, and they too hugged me and were thrilled to see who their little girl had become.
“And look at this,” Erica said. It was a beautiful piece of wood with holes carved into it to represent a braille cell. Papaw (my maternal grandfather) made it for the Center when I went there, and it is still used to introduce children to braille today.
“What was I like when I went here?” I asked Erica. It was so long ago my memories were random fragments, mostly of field trips to a ranch to go horseback riding, or fun sensory experiences like playing in a tub of rice or water. I really had no memory of how I acted and what I did on a day-to-day basis.
“Oh you were precocious,” Erica said, “you were almost always happy, and sometimes goofy.” For example, she proceeded to tell me how I once stomped my feet really loud and fast to imitate someone running and then announced to everyone “Shhh! Someone’s coming!” Upon hearing this story, I laughed so hard tears were streaming from my eyes. It was then that I realized why Mom dragged me to this event, and I was really glad she did. My preschool days were so long ago for me, and the memories so vague. She knew that some of the staff who taught me were still there today, and she wanted me to see them, not only to make their day, but I think also to show me how much of a blessing these people, and this program were on my life. These people, this program helped my parents navigate my vessel when the prospect of raising a blind child was a little overwhelming, and when I was too young to even realize I was different. These people, this program built a foundation of happy, even if fragmented memories, and gave me a great start on the journey to the successful college student I had become.
I came into the world a healthy baby who, for the first six months of life, I am told, was able to look right at the camera when pictures were taken. But when I was around six months old, my parents started noticing that I was using my left hand a lot more than my right when playing or reaching for things. When Mom mentioned it to the pediatrician, he merely said, “Huh, that’s interesting.” Since he wasn’t concerned, Mom wasn’t either at first, concluding that perhaps I would just be a lefty. She also noticed I would cry when she drove over big bumps, which she thought was unusual, but at the time, it didn’t seem to warrant calling the doctor. But the turning point came the weekend of Halloween 1990 when I cried because my right arm got stuck under me while trying to roll over. That’s when my parents knew something was wrong. Ironically, this inability to roll over was noticed during a weekend trip to Indiana to visit my paternal grandma and grandpa, and to attend a fundraiser Grandpa organized for a little boy suffering a brain tumor. So first thing Monday morning when we got home from the trip, she called the pediatrician who immediately referred me to a neurologist.
In hindsight, my parents discovered that this neurologist wasn’t the most honest doctor. They first suspected this when he came to visit me at Children’s Hospital because he was “curious to see how I was doing”, and then billed our insurance company for the visit despite the fact that upon being referred to Children’s Hospital, I was technically no longer his patient!
But originally, they didn’t know anything about this doctor, and so went along when after an office examination, he ordered an MRI to be done at a particular diagnostic center which he told my parents had better equipment than Children’s Hospital. Unfortunately, the center couldn’t get me in for a week, which was an agonizing wait for my family. But when the MRI revealed a mass on my brain, I was immediately referred to Children’s Hospital, where it turned out the scan done by the Diagnostic Center was insufficient, and therefore had to be repeated. The mass was later determined to be a Pilocytic Astrocytoma, a rare brain tumor which originated from the hypothalamus and was crushing my optic nerve. In hindsight my mom told me, she wishes she would have brought me to Children’s Hospital right away. Sometimes, it still makes Mom sad to think that my treatment could have started a week earlier had she not waited to get into the diagnostic center. But doctors were pretty sure this week would not have made a difference in the outcome.
It is difficult to tell whether an infant can see or not, but thinking back on it, Mom remembered that long before the paralysis surfaced, I would stare intensely at people. At the time, she thought it was an adoring stare, but when she told an opthalmologist about it later, he indicated this staring could have been the first sign that I was having difficulty seeing people, and thus, the first sign of the brain tumor. During the week waiting to get into the diagnostic center, no new symptoms emerged. This indicates to me that the tumor was a slow-growing tumor.
This first neurologist was our one and only negative experience with doctors. All the other doctors that would treat me were outstanding. Upon review of my new MRI at Children’s Hospital, I was referred in to the skilled, compassionate hands of Dr. Dunn, a neurosurgeon.
Even when I was officially considered cured, I would visit Dr. Dunn every year for follow-up until my seventh grade year when he retired. I actually looked forward to visiting this doctor all year. While most of the zillion doctors I had to see due to the complications of my tumor were in the sterile, stale atmosphere of the busy Children’s Hospital, Dr. Dunn’s office was in a quiet old building downtown that had that distinct wood fragrance that old buildings have, and where I heard a secretary clicking away on the keys of an old fashioned typewriter instead of a computer.
The neurological tests he did were more interesting than the poking and prodding of other doctors. In one test for example, he would ask me to tell him when I thought a minute had passed to test my brain’s perception of time. So I would sit quietly and try to count the seconds, “one one thousand, two one thousand,” in my head. The last time I visited him, I was ten seconds late, but he said this was an acceptable and normal margin of error without a clock to watch. When I was in second grade, he brought a model of a brain where you could peel away the different layers to show me how deep the tumor was in my brain. Every year, he also did the test for reflexes that all general physicians do where they tap that sweet spot on your knee with a special hammer to see if it bounces, but I think Dr. Dunn had a special touch with that hammer because it seemed like my knee bounced harder when he did it which always made me laugh.
He was the kind of doctor whose passion for his job and compassion for his patients was genuine. In other words, unlike the previous neurologist, this doctor clearly did not choose the profession for the money. Mom said when I was a baby, he referred to me as his little princess, and he was always genuinely thrilled to see how far I had come over the years of follow-up. After my grim diagnosis, his skill and compassion were a blessing for which my parents and I will forever be grateful.
As awful and scary as this diagnosis was, the silver lining was that if you are going to get this kind of tumor, infancy is the best time to get it, according to Dr. Dunn. In infancy, the skull and brain are not fully developed, so the brain can expand to accommodate a tumor, whereas in a fully developed skull, the tumor puts pressure on the brain causing horrible headaches. It is also much riskier to operate on a fully developed brain.
This was brought home when I was fifteen years old. Four years before that, my vision teacher started working with a girl who was newly blind at the age of nine from a brain tumor. I don’t know if her tumor was classified as a Pilocytic Astrocytoma like mine, but my teacher told me about her because the tumor bore an eerie resemblance to mine, destroying the optic nerve and the pituitary. But perhaps because her brain was fully developed, it was inoperable and she had to endure chemo treatments. For awhile, the cancer appeared to be in remission, but a couple of years later, the tumor came back with a vengeance and nothing more could be done. She passed away just a few months later, not long after her thirteenth birthday.
I did not know this girl because she lived in a different school district, but when my teacher told me her tumor came back and was going to be terminal, the news shocked and haunted me. When I found and read a blog the family created to write about her suffering and how she handled it with grace, and recounted sad events like the celebration of what everyone knew would be her last birthday, I almost cried. I have read other accounts of people suffering with cancer, but none of them haunted me the way her story did because but for the grace of God, I could have suffered as this girl had and my parents could have been the grieving parents.
Given that brain tumors are rare in children, pediatric neurosurgery is a highly specialized field. So most of the other neurosurgeons Dr. Dunn consulted with in preparation for my surgery only had experience treating adults, and based on their experience, they would have been hesitant to operate, fearing it was too risky. But Dr. Dunn was optimistic that in my case, an operation could be successful. If I had been referred to a general neurosurgeon rather than Dr. Dunn, a highly skilled pediatric neurosurgeon, there is a good chance I wouldn’t be here today.
Of course, it would be a risky operation. I came to a better appreciation of this risk when I was old enough to study the complexity of the brain in school. The brain does more than think and store knowledge and memories. It also governs vital, involuntary bodily processes like breathing and digestion, makes meaning of all five of our senses, and produces hormones that regulate everything from stress, to fluid and electrolyte balance to puberty and reproduction. The inside of the brain resembles a bowl of spaghetti and many components are tiny and very close together. So even though infancy gave me a better prognosis, when you are talking about an organ as complex and important as the brain is, I don’t think there is such a thing as a low-risk surgery. Dr. Dunn acknowledged the risks to my parents. There was a chance that I wouldn’t survive the operation, or that I would survive, but in a permanent vegetative state. But without the surgery, I would have little chance of survival at all. So my parents made the heart-rending decision to literally put my life in Dr. Dunn’s hands. Surgery was scheduled for November 12, 1990.
The surgery lasted ten agonizing hours, all of which Mom said she spent in the waiting room praying for me. Relief washed over her when she found out that surgery had gone well, and when she was allowed to see me, she said I looked like my normal happy self. But I would have a long way to go before I was out of the woods. After any kind of brain trauma, which brain surgery is, it is natural for the brain to swell. Another advantage to infancy was that the doctor didn’t have to remove part of my skull to allow room for the brain to swell, which has to be done for fully developed brains. But my brain swelling was still a scary event for my parents to watch. In fact, Mom told me that if she hadn’t personally witnessed the swelling, she would not have recognized me if she had just walked in to the room and seen me that way. The swelling didn’t last long, but that was only the first of many scary moments.
The pituitary gland, despite only being the size of a pea, is a vital component of the brain which produces hormones that regulate all kinds of bodily processes including such things as coping with physical stress (stress caused by an illness like the flu or time spent outside on a really hot summer’s day), managing the growth of bone and muscle tissue, and keeping fluids and electrolytes balanced. After surgery, it was discovered that the tumor had damaged this gland when my electrolytes swung wildly for awhile. One moment I would be listless and dehydrated and the next I would be over-hydrated, which can cause sodium levels to get dangerously low, which causes seizures. I also wasn’t producing the hormone that helps the body cope with physical stress. Eventually, doctors figured out the right doses of synthetic hormones for me, but for awhile, life was scary for my parents who said it seemed like I would take one step forward and then two steps back. I was also put on seizure medication until I was about two years old as a precaution since just the trauma of brain surgery can cause seizures.
My first Thanksgiving was spent in the hospital with Mom watching the Macey’s Day Parade at my bedside. I was able to come home for my first Christmas, but I was sick with a fever that day.
Then in January, Mom noticed new swelling around the surgical site. At first, she didn’t know what to make of it and just kept me home and watched it. But when she noticed it getting worse, she took me back to Dr. Dunn who said this was caused by fluid building up in the brain and it would need to be drained. So at the age of ten months, I had to be wheeled in to the operating room for a second brain surgery in which a shunt was placed to drain the fluid. Some brain tumor survivors require the shunt permanently, but in October of 1991 when fluid had stopped draining, Dr. Dunn and my parents decided to remove the shunt so I would not have to live with the risk of infection that comes with having foreign objects inside the body. So by the time I was a year and a half, I had undergone three brain surgeries, more than most people will undergo in their lifetime.
From a medical standpoint, my river would continue to be a little choppy for several more years. Every six months for several years, I would continue to need scans to make sure the tumor didn’t come back. When I was old enough to be aware of things, these scans were procedures I dreaded as it is frightening at any age, but especially as a child, to be strapped down and wheeled in to those machines that made strange knocking and humming noises, and of course like all children, I dreaded the needle that had to be poked into a vein to administer dye. For my parents these procedures were scary because the possibility of devastating news from one of these scans always lurked in the back of their mind. My odds for survival were improved dramatically by the fact that Dr. Dunn was able to remove all of the tumor, but when you are talking about cancer, you don’t want to get overly confident because it can return with a vengeance.
Even after the threat of my brain tumor’s return had abated, the river hasn’t always been smooth. I have to take synthetic hormones for the rest of my life as a result of the damage to my pituitary gland and I have had to deal with occasional medical complications because as wonderful as modern medicine is, synthetic hormones don’t work quite as seamlessly as naturally produced hormones. Hot, humid summer days take a lot out of me, sometimes requiring me to take an extra dose of the stress hormone, and my parents have had to call 911 three times over the years when three different stomach bugs threw my electrolytes out of whack. So needless to say, I take extra precautions to reduce the risk of stomach viruses or food poisoning.
Most of the replacement hormones I needed were available in pill form. When I was really little, Mom would crush these pills in applesauce, but I mastered swallowing pills by the time I was eight years old. But one of the underlying conditions my tumor caused was diabetes insipidus. It has no relation to sugar diabetes at all. This condition means that my body does not produce a hormone that allows the body to store fluid. The endocrinologist told my parents this hormone wasn’t absolutely necessary to sustain life, but certainly improves the quality of life. Without this hormone, I would be in a constant state of thirst, and would need to use the restroom very frequently. But unfortunately during childhood, even though I was prescribed this medicine, I frequently got to taste what life would be like without it. This medicine had to be dosed very carefully, as too much of this medicine in the system could cause the body to retain too much fluid, leading to low sodium and seizures. This medicine was available in pill form when I was a child, but the pill only came in adult-size doses, so I had to take it in a nasal spray form that required my parents to blow it into my nose through a tube. But this medicine wasn’t very reliable. Sometimes, it just wouldn’t absorb, and if I had a cold, and sometimes even if I didn’t, I would sneeze the medicine out. But my parents could not administer more because there was no way of knowing if some of it still got absorbed, and the consequences of too much medicine in the system were too dangerous to take any chances. So it was not uncommon for this medicine to wear off in the middle of a school day, or for me to have to get up multiple times at night. For many years, I could not reach the kitchen cupboards to get a glass, or the faucet in the kitchen sink. Mom didn’t want me drinking out of the bathroom sink, so until I was in second grade, I would have to wake my poor parents up to give me water. Once I had woken them up three or four times, they could be confident that my medicine had worn off and it was safe to give me another dose so we could get back to bed for good. Then in second grade, my parents decided to rent a water cooler, which I could easily reach, and I was designated my own plastic cup which I kept on top of the water cooler and re-used all day. Although my situation was the impetus for renting the water cooler, the whole family loved it. At that time, we had well water that was safe to drink, but didn’t taste great, and because it was hard water, it made Mom’s tea and coffee a gross, cloudy color. The only downside to the water cooler was the chore of carrying in the five-gallon bottles of water and hoisting them onto the water cooler, a chore usually assigned to Dad or my older brothers, but I don’t remember anyone complaining about this chore because I think they realized the water tasted so wonderful it was worth the effort of replacing the bottle.
Because of the unreliability of this medicine, one of the accommodations in my education plan was that I had to be allowed to keep a water bottle with me at all times, and to be granted permission to use the restroom any time. When I was in seventh grade, I had an unempathetic math teacher, and one day, my medicine wore off and I needed to use the restroom during her class. I raised my hand, and she granted me permission, but grudgingly, saying I should have gone during lunch. Lunch was just the period before, so under normal circumstances, she would have been right, but from her response, it was clear she didn’t read the letter given to all teachers about my condition, or didn’t take it seriously. In any case, when I told my mom about it, she was furious and wrote this teacher a civil but angry letter. (Not long after that incident, due to other difficulties I was having in her class, I was transferred to the slower-paced Math class.) But what a blessing it was my freshman year of high school when my body chemistry changed such that I could start taking a half tablet of this medicine in pill form!
Another hormone the pituitary normally produces is growth hormone, but this hormone doesn’t normally kick in until children are around four years old. Until then, their bodies grow naturally. But when I was seven and still the size of a four-year-old, my doctor realized we had a problem. Sure enough, a test revealed I was not producing this hormone, and the only means of getting this hormone was a daily shot, which I was not at all thrilled to hear. But I quickly learned to cooperate because my mom did a great job explaining how without this shot, my quality of life would be diminished. She reminded me of how I needed a family member to get me a glass for water because the cupboard where the glasses were stored was out of my reach. If I cooperated for the shot, I would be able to reach this cupboard one day. The bitter pill of finding out I would need a daily shot was also eased considerably by the fact that Mom was a registered nurse, so administering shots was nothing new for her. I may not have liked having to get a shot, but I couldn’t have asked for more skilled, loving hands to administer it. With this shot, I reached a normal, functional height of 5`4. Normally, adults produce a small amount of growth hormone their entire lives, and my pediatric endocrinologist, an excellent doctor who kept up with the latest research related to my condition, thought I may need to take growth hormone my entire life because some research at that time indicated that people with my condition who stopped taking it were at higher risk of heart problems. When it was time for me to graduate to an adult endocrinologist, my pediatric endocrinologist referred me to a colleague whom he knew would continue to keep up with the latest research. A few years into adulthood, new research indicated there really is no difference in health outcomes, so I no longer have to take shots!
But while growth hormone got my growth back on track, it caused other problems in the beginning. It caused me to grow so quickly that my body went haywire. The summer between second and third grade, I became severely anemic and had no appetite. The result was that when I started third grade, I was so skinny I am told I looked like a starved child from a third-world country. With a daily iron supplement, this situation gradually resolved, but when my appetite came back, my parents were so relieved to see me eating that they allowed me to fall into bad habits so I became a little overweight as an adolescent. The doctor also discovered that I had severe Scoliosis, so from January of third grade until the fall of my freshman year in high school, I had to wear a back brace, ideally for 22 hours a day. I am not sure if the spine doctor officially endorsed it, but my parents blessedly made exceptions occasionally so that I could enjoy swimming at camp, or fit into my munchkin costume when I wanted to participate in the school production of The Wizard of Oz in fourth grade. But in order to prevent spine issues later in life, it was important that I wear the brace as much as possible. The day the doctor thought I would no longer need this brace is high in the running for the happiest day of my life. I rarely have back aches now, but I had back aches often sitting in the hard plastic brace on hard, plastic school chairs all day, and it was very difficult to find a comfortable position for sleeping at night. While not the only factor, the brace may have contributed to my not having many friends in middle school, because the only clothing that could fit over the brace were “old lady clothes” with elastic waist bands. I felt like an old lady too as the brace made it more difficult to bend over, or stand up from the floor. I briefly attended physical therapy in fourth grade and my parents were given a list of abdominal exercises to preserve muscle tone which would have addressed this very issue, but I lacked the self-motivation back then to stick with these exercises, or any exercise for that matter, and life was too hectic for my parents to fight me. But a positive attitude about the brace was largely restored by Mrs. Lillie, a neighbor and close family friend. Her sister also had Scoliosis while growing up in the 1960s and had to wear a brace, but it was nothing like my brace. One time when I went to visit her, she showed it to me. It looked more like a torture contraption, with metal bars that came all the way up to her neck. I wasn’t religious at all back then, but after seeing that, I remember silently thanking God for modern medicine, and my custom-fitted, plastic brace with foam padding on the inside that only went around the middle/lower region of my spine.
And then of course, my family and I all had to learn to navigate life with blindness. Mom admitted that it was emotionally difficult to find out that I would be blind, as it would be for any parent.
“For a short time, I would get kind of sad when I would think about all the beautiful wonders you would never get to experience, like the changing colors in fall, sunrises and sunsets,” said my mom, “but then I realized there were so many wonders you could still enjoy like the sound of birds singing, the smell of flowers and the feel of a warm breeze.” Around the same time I lost my sight, Aunt Bootsy, an elderly relative on my mom’s side had lost most of her sight and had been struggling with depression. I don’t remember Aunt Bootsy, as she passed away when I was around two years old. But Mom said when Aunt Bootsy saw what a happy child I was despite being totally blind, her attitude toward her vision loss changed.
Around the time Mom found out I was blind, she read a couple scary stories in the newspaper. In one story, a local blind man fell into an elevator shaft. Apparently, the elevator door opened, and he proceeded to step into the elevator, but due to a malfunction, the elevator wasn’t there yet. He ended up being okay, but the thought of this potentially happening to me someday made Mom shutter. In another story published shortly thereafter, another blind person was struck by a car. Reading these stories so soon after finding out I was blind did lead to some over-protectiveness my entire childhood. But all in all, my parents have always amazed me by how they have accepted and embraced the fact that I am blind, and faced the challenges that came our way with confidence. They have also done an excellent job teaching me to do the same.
Growing up totally blind, I have had to overcome significant challenges to achieve things my peers take for granted. But the older I get, the more I have come to recognize and appreciate the grace of God in my life right from the start. When it became apparent that I would be blind permanently, a doctor informed my parents of a state-of-the-art preschool program specifically designed to meet the unique developmental needs of blind children. At the time, my parents thought all major metropolitan areas had programs like this, but they later learned this program was the only one like it in the Midwest! At that time, the Center did not have a permanent location. They would rent space in various office buildings, and it seemed like every few years, they would have to move. Just before my time there, and the year after I graduated, the Center was located in buildings that my mom said she would have driven to, but it would have posed more of an inconvenience as they were relatively far away. But in another stroke of what my parents and I now recognize as divine intervention, during the years that I received services from the Center, it was located just a ten minute drive from our house!
I started receiving services from the Center when I was around ten months old. A few years ago when Mom and Dad told me I should consider graduate school, I jokingly replied, “I’m tired of school. I’ve been going to school since I was ten months old.” They laughed because it was kind of true. In these early months, I think my education consisted primarily of physical therapy. Physical therapy was very important in my case because I had two strikes against me. Because my right side had been paralyzed for awhile, I lost muscle tone on that side and had to regain my strength. Then, because I was blind, I couldn’t learn to crawl or walk by watching others as typical children do, so I had to be taught these things. This is probably the age when I would have laid in that cubby with the dangling plates and spoons, so I did get some early sensory experiences as well.
Mom says that physical therapy was the only time when I did cry a little at school. The activities weren’t always fun, and I absolutely hated the idea of crawling. In fact, I actually have snippets of memory of me sitting and scooting on my bottom to get around the house, which I much preferred over crawling. The physical therapists told my mom that crawling is a critical developmental milestone that could not be skipped, but Mom suspects she knew why I hated it.
“You were no dummy! You knew that if you crawled, the first thing that would find an obstacle would be your head. Why would anyone want to get around that way?” Mom told me once.
It’s funny how although we change a lot as we mature, some things never change. I still hate to crawl. Of course, now that I can walk, crawling is no longer necessary on an everyday basis. But if I drop something, I will first utter a swear word, then pull off a shoe, search for the item with my foot, and pull it back to me so I can bend over and pick it right up. If I cannot find it with my foot and have to get on my hands and knees to search more intensively, I utter another swear word. Getting on my hands and knees to look for something is only done as a last resort! But just as with Math later in life, I eventually sucked it up and crawled just enough to graduate.
In these early years, my physical development was delayed, which was to be expected for the simple reason that my brain tumor came to light right around the age when most children start crawling, so because I was paralyzed and sick most of those months, development was put on hold. Therefore, I didn’t crawl until I was almost two and didn’t really master walking until I was four years old.
Until I was around two and a half years old, my mom had been a stay-at-home mom, but because my dad was uncertain about his job security, Mom decided to take a job as a home care nurse for another child with a disability. She would work second shift, and I remember her picking me up from my morning at the Center, which ended at 11:30, bringing me home, fixing lunch, greeting my siblings when they came home from school and heading off to work.
Legally, my brother Ben was the babysitter because he was old enough, but my sister Rebecca–who it’s crazy to think would have only been eight or nine at the time–was a natural when it came to babysitting, and she became like my second mom when Mom was at work.
I don’t personally remember this, but Mom said Rebecca would practice what I had been doing in therapy with me. Somehow, Mom came to realize that I would walk for the therapists, and I would walk for my sister, but I would not walk for her and Dad.
Mom asked the physical therapist about this one day, and she said this is natural behavior for children my age. I guess psychologically, children at that age believe that if they demonstrate too much independence, their parents will abandon them. I don’t remember what the professionals did to overcome this, but I was walking without a second thought by the time I was four. But when I heard that I would walk for my sister, it warmed my heart and made me realize we have a special bond.
It was through my sister that Mom also discovered I wasn’t sleeping at night. This, my mom was told, is also common with blind children. Since they cannot tell time, nor can they tell light from dark, it is not uncommon for their circadian rhythm to become completely messed up, which is what happened with me. I would basically sleep all day and want to stay up all night and play! I shared a bedroom with my sister until one night when my mom heard noise in the bathroom, woke up and almost tripped over me, who was casually playing on the floor as if it were the middle of the day.
“She does that every night,” my sister confided to Mom, “I try to coax her back to bed.” Upon learning this, I was given my own room, and when I couldn’t sleep, Mom stayed up with me, passing the time by ordering supplies the family needed over the phone from Sears catalogs. For some blind people, this problem persists into adulthood. It is actually a recognized medical condition called Non24, and I have seen commercials advertising a medication for this condition. A few years ago when the medication was in clinical trials, I received several letters in braille trying to recruit me, but I declined because once I started having a more consistent school routine, and thus a better perception of time, this issue resolved on its own. I am still a bit of a night-owl. When my parents are sleepy and hit the sack by 10:00, I have been known to stay up reading or writing until 1:30 in the morning. But Mom says this has nothing to do with the fact that I am blind. It’s genetic. I take after my brother Ben.
In those early years, feeding me was also a challenge. The Center worked on this issue quite a bit, but it was an ongoing problem that continued to require patience when I graduated to elementary school. In those few years, there were only three things I would reliably eat: spaghetti-os, applesauce and milk. Mom suspects that because I was blind, my other senses were heightened and thus I had aversions to many textures. So I am told many hours of my time at the Center were spent cajoling me to try a variety of foods.
Despite all the challenges I had to overcome in those years, there was plenty of time left for fun, and I have fond memories of fun times at the Center. The classroom was full of delightful sensory toys, from a tub that was filled with rice on some days, and water on others, to braille books with tactile pictures, to tambourines and drums. I remember having a blast when we were free to play. On occasion, a local musician named Tony would visit our classroom and play drums for us.
The Center had school year-round, but at that age, I had no conception of time anyway. When the weather was warm, we often took field trips, and looking back, these field trips probably coincided with summer vacation for regular schools because my siblings often came along to help out on these trips. Sometimes, we would go to a nearby park to play in the sand and swim in the lake. It was on one of these trips I vaguely remember throwing a tantrum because we were going to go for a boat ride and I wanted to ride the boat but didn’t like the feel of the lifejacket. I’m not sure how that ended up getting resolved. When I was a little older, I remember using my cane to walk to a nearby Walgreens and bringing back animal crackers for the principal. I remember visiting farms and petting animals, but I especially enjoyed horseback riding. In our community, there is a place simply called The Ranch, which caters to people with special needs. Sometimes we would go there, and sometimes, they even brought horses to the Center. The horses they used with us were older and extremely well-trained, so well-trained that Mom said I had absolutely no fear of the horse. In fact, as someone who had ridden a horse as a child that was wild and tried to buck her off, she was a little terrified when she saw me sitting on a giant horse, calm as can be, not even holding onto the saddle. I was definitely ignorant of how big horses are and how far I would fall if I fell. Ignorance really is bliss.
Perhaps if we lived on a farm, I could have become an expert rider, but as it was, horseback riding was such a rare activity once I left the Center that if I got on a horse now, I would be terrified.
Those were my preschool days, idyllic days my five-year-old self didn’t understand were about to end. But on a Friday in August, just two weeks before I would start kindergarten, I celebrated my first graduation. I didn’t really understand what graduation meant. I knew it was something special because Granny and Papaw came to be there for it, and I got cake and presents. I feel like one of my presents was a rain stick, which I enjoyed playing with that day. But while I was oblivious to the significance of this milestone, I think for my parents, this graduation was akin to celebrating survival following a brutal storm. Sure, they knew the waters ahead were uncertain. But given that I was graduating pre-school at the same age as my sighted peers when just a few years earlier, doctors weren’t sure I would live to experience pre-school, they were optimistic that my future could only get brighter.
I think these early challenges brought my parents closer to God, but I was too young to remember the brain surgeries, and the challenges associated with being blind were just a normal part of life for me. It wasn’t until high school that I began to discern that I wanted my life to count for God for reasons completely unrelated to these challenges. But as an adult looking back on all the “coincidences” that fell into place that prove God’s grace and sovereign intervention in my life, I see these blessings as all the more reason to want my life to count for God.
Gilbert and Me 