Mom's first touch.

Dad's first touch.

Amazing

Most of my life I’ve been told how amazing I am. But I disagree.

This is what’s amazing means to me.

Growing up in a small community, where all your friend’s dads work at the same place and all our moms are in the PTA. Where a little girl can walk to a neighbor’s house and not fear being taken by a stranger. It’s where Christmas is always white, and the autumn brilliantly lit. It’s kites in the spring and swimming at the lake in summer.

It’s falling in love with someone I’d known most of my life. It’s a wedding on a clear and sunny October day. It’s the nurse that tells us we’re going to be parents. (This is more than amazing. It’s awesome.).

It’s a darling baby boy who is a part of me. It’s skin so velvety soft it takes my breath away. It’s his first giggle and rocking his small, warm body close to mine in the middle of the night.

It’s a sweet little voice singing “Santa Claus is coming to town.” It’s the sound of his excited squeals as he opens his presents. It’s Easter egg hunts with cousins and setting off fireworks on the railroad tracks on the Fourth and it’s the unrivaled happiness of a little boy whose just won the scariest Halloween costume contest in Kindergarten.

It’s T-ball games and county fairs and his thrill over catching a fish and learning to ride a bike like a big boy.

It’s singing Happy Birthday to him year after year.

It’s his bond with me, his blind mother. It’s his tiny fingers clutching wilted dandelions for me. It’s his non-stop chatter spilling out his imagination.

It’s amazing when a boy grows into a teenager, and from a teenager into a fine and caring young man. It’s amazing when, on a normal school day, I’d hear his voice on the phone:
“Mom?”
“Yes. What’s wrong?”
“Nothing. I just wanted to say I love you.”

It’s the times he came home from school and threw himself across my bed and talked about his day. It’s how funny he was. How he could always make me smile.

It’s the dedication he showed to his beloved red bone puppy, Duke, when it got sick with Parvo. It’s the week of school he missed while nursing that dog around the clock, dripping water into its mouth, so that in spite of the odds, Duke lived.

It’s his school counselor calling him “Mr. Personalty,” and his friends loving him as much as he loved them. It’s that he had so many best friends.

It’s his ability to play the guitar, that he inherited his dad’s talent. It’s the hours of old rock songs he’d serenade me with for hours on end, the guitar an object of magic in his hands.

It’s his excitement over finally passing his drivers test, and his first car, a little white Subaru. It’s his pride over receiving his electrical apprentice license.

It’s his reaction to his surprise 18th birthday party. His excitement of going to his high school prom. His pride of graduation.

It was the strength and courage he showed when I was diagnosed with cancer, and when his father had heart surgery. It was how he sat by my bedside, being my angel. My teenage boy who grew into a man far too soon.

What’s amazing is the love and compassion he shared. His hugs and kisses every time he walked past.

It was his perseverance, how he tried to live life to the fullest, how he gave it all he had whether he felt like it or not.

What’s amazing is being a family of three, laughing together as one.

It’s when I’m at my lowest and he visits my dreams. It’s the one night when I actually touched him. It’s him knowing Mom needed to “see” him.

It’s when the sunshine is warm on my skin, When I feel his smiles. It’s when I feel the raindrops on my face, instead of my tears.

I’ve so often heard the word “amazing” when my blindness is mentioned. When my son’s complicated disease comes up. When someone mentions me being a writer and the owner and operator of a greenhouse. It’s the word people use when they hear about me surviving brain cancer.

It’s the word they use when someone hears that I’m living alone. That not only did I lose my precious son when he was only 19, but that my husband died, too, just seven months later.

But I’m not amazing. I wake up every morning wondering when I won’t be alone anymore. I take a deep breath and try to blink back the tears. I eat just enough to take the edge off, to enable me to put one foot in front of the other.

It’s not amazing to go on. Not when going on is the last thing I want. Not when it’s what I do simply because I have no other choice.

The memories flood over me, too many to tell, and no new ones to come. On February 9, it will be one year since he left.

It’s amazing that my body continues to live, since my heart hasn’t beat since that day.

My Special Child

No words could capture the joy I felt when I held my tiny son for the first time. With only a blanket wrapped loosely around him, my fingertips served as my eyes, exploring every inch of him, verifying his perfection. The feel of his satiny soft skin brought tears to my eyes, and instead of crying like most newborns did, he cooed. I felt his little arms and legs pumping excitedly. I imagined he was telling us of his long journey into the world.

When the lab technician told me my pregnancy test was positive, butterflies had danced in my stomach. It was the news I'd longed for . . . or was it? Nagging doubts crept in, dimming my happiness.

My husband and I wanted to have a child more than anything, but could we handle it? Although I realize most new parents have doubts, it was different for me. By the time I became pregnant, I had been totally blind for eight years due to an eye disease called Retinitis Pigmatosa.

Just as I began to feel confident that I could do this, that I could handle a baby and be a good parent, the reactions I began to receive from others made me begin to second guess whether I could.

My pregnancy was a breeze until my ninth month, when I developed pre-eclampsia. As my blood pressure rose higher and higher, the doctor ordered complete bed rest for the remainder of my pregnancy. The only time I could rise was to go in for my twice-a-week hospital visits for non-stress tests monitoring the baby’s progress.

A week before my due date, tests revealed that my blood pressure was extremely high. The baby was showing signs of distress. The doctor decided to induce labor. After the month of bed rest and repeated tests, my husband and I couldn’t have been more ready to have our baby be here, where we could take care of him and keep him safe. Once he was on the outside, everything would be fine.

After the IV drip was started, my labor began right away, but the contractions remained exactly five minutes apart for the rest of the day and the night. I was not dilating. The next morning the doctor told us the situation was serious and recommended that I have a C-section. I was quick to agree. In no time, our baby boy was delivered. Joshua Adam Conrad was here, weighing in at eight pounds, eight ounces.

When the nurse placed him in my arms that first time, it was magic. I held him close, smelled HIS BABY SWEET SCENT, touched him again and again, amazed by his SATINY SMOOTH SKIN AND perfection. This tiny person was mine. So swept up in the moment was I that I barely took note of the nurse who was wiping his little face and remarking that he was sweating.

It was, we know now, the first symptom, but we were blissfully unaware that we were being warned. By 11 that night, the maternity ward nurses at our small hospital told us his blood sugar was too low. They contacted a larger hospital to speak with their pediatrician, who simply advised that our baby be fed more often. They told us low blood sugar is somewhat common with newborns, so we began feeding him every three hours. It seemed to do the trick.

When we brought our baby home, my motherly instincts kicked in. Taking care of him no longer frightened me. Being a new mom seemed as natural as breathing. My husband and I were amused by our son’s already strong personality. His dad adored him and did everything for him that he could. Our dream of becoming parents had become a happy reality.

As time passed and Joshua grew, strange and confusing symptoms began to emerge. At times he was plagued by chronic diarrhea. He was often very irritable and nothing satisfied him. His crying made the nights seem endless. We walked with him, sang to him, played music for him, and wound and rewound his swing. Nothing we attempted could sooth him.

At my wit’s end, I made many calls to the pediatrician, desperate for something that would cure my baby’s discontent. The doctor seemed unconcerned about the symptoms, chalking it up to the many fears of new parents. We trusted him. He was the expert. If something were wrong, he would know.

Then one time, we slept past his three-hour feeding schedule. The sleepless nights had exhausted us all, and we’d simply overslept. When I woke and realized the time, I rush to him and scooped him up, my heart thudding with panic and guilt. He was as limp as a rag doll in my arms. I dripped some formula into his mouth and he soon roused, but I knew deep down that something wasn’t right, that this wasn’t normal.

Joshua drank double the amount of prescribed formula and devoured his bottle ravenously, as though starving. But afterward, most of it would come right back up. His hunger seemed insatiable, and the older he got, the bigger his belly became. At eight months, he could sit up by himself, but it was difficult because of his big tummy. And crawling was impossible.

Although we were still enduring night after night of endless crying and many days when Joshua just didn’t seem to feel well, he still tried to be a happy baby. He loved attention and would reward us with big toothless smiles.

During Josh’s nine-month check-up, the doctor noticed his distended belly. He’d seen him only a month before and was concerned about how big his tummy had become in such a short time. We both knew he was chubby, but we were unaware that his kind of chubbiness was not normal. After the examination, the doctor sent us next door to a second pediatrician. Our nightmare began that day.

As the new doctor examined Joshua, my husband and I were given paperwork to fill out. The questions were strange. “How did your husband feel about news of your pregnancy?” “How did you feel about the news of your pregnancy?” “How did you feel about becoming a parent?” The questions seemed unbelievably stupid. What did any of that have to do with my baby not feeling well? It made us feel as though we were suspected of neglect or abuse.

As we filled out the paperwork, the doctor asked us even more degrading questions, his tone full of accusation, making us feel like unfit parents. “Did you not notice the baby’s abdomen was too large? How could you not realize how sick he is?” My husband and I were both scared and upset.

After his interrogation, the pediatrician sent Joshua next door to the hospital for X-rays. After the tests were done, we were told matter-of-factly that Joshua was merely constipated. They wanted to keep him there overnight so he could be monitored. We were confused by the doctor’s change in diagnosis. One moment he acted as though Joshua was seriously ill, then the next, he said he was just constipated.

I spent the night with Joshua. A seven-year-old girl shared his room, and since her mother was with her, I saw no reason for Bobby to stay. I sent him home believing we would be fine.

At midnight that night, they began withholding all food and liquids from Joshua. I was naïve enough to go along with the doctor’s orders, believing again that the professionals must know better than me. It wasn’t until later that I learned fluids should never be withheld from a baby, even for a short time. Dehydration can occur quickly. Joshua wasn’t even hooked up to an IV.

Throughout the night, Joshua cried pitifully, wanting his bottle. As the hours passed, his cries grew weaker and weaker. At times, I cried right along with him. Keeping food from him seemed the cruelest thing in the world. My instincts screamed at me that this just wasn’t right, but surely the pediatricians knew what they were doing.

By early that morning, Joshua had a high fever and was unconscious. I sat next to my motionless baby, stroking his soft skin. Just the day before, he’d been laughing. Now he was limp and still. Words can’t express the terror and helplessness I felt.

I begged the nurses for information. “What’s wrong with him? Why is he like this? He wasn’t like this yesterday.” They just said they didn’t know. I became more insistent, wanting to speak with the doctor, but he was mysteriously absent, which only heightened my fear.

Soon, Bobby arrived with my mother. They found me bordering on hysterics. I knew in my heart that something was seriously wrong. After taking Joshua down for an ultrasound and more x- rays, they scheduled a CAT scan. During all this, there was still no sign of the doctor. His absence seemed strange. Hours went by. Joshua didn’t move.

After what seemed like an eternity, the doctor called us into his office to tell us that our precious baby boy had cancer of the liver and kidney. We were numb. Devastated. But something still just didn’t feel right. Through my numbness, I kept asking, “But why is he so sick now? He was fine until last night. Until he was here.” The doctor just said that he didn’t know.

I will never forget or forgive the treatment we received from this doctor. I learned later that he’d lied to us about the x-rays taken the day before. He had seen the enlarged liver and kidneys, but hadn’t said a word to us about it. The way he hid from us until he was ready to deliver his news was unforgivable. Even though he was not an oncologist, he proceeded to tell us that our baby had something that, in truth, he knew nothing about.

My husband had been holding Joshua when the nurse came to get us to talk to the doctor, so Bobby had just brought him along. During our time in the doctor’s office, Bobby had managed to get Joshua awake long enough to drink a few sips of Sprite. We later learned it was those few Sprite sips that very likely saved our son’s life.

The doctor ordered an ambulance to take Joshua to a bigger hospital that specialized in pediatric medicine. Within three hours, the oncologist there was informing us that he didn’t agree with a single thing we’d been told. Instead, he told us Joshua had a rare liver disease called Glycogen Storage Disease, Type 1A. Joshua’s liver was missing an enzyme that breaks sugars down for the blood. The liver dysfunction had caused the blood tests to be wrong, and withholding fluids not only dehydrated him, but could have also killed him because of his extreme hypoglycemia. Had my husband not been able to get those little sips of Sprite into Joshua when he did, normalizing his sugar, he most likely would have died.

The treatment to keep his sugar level was fairly simple--one tablespoon of raw cornstarch with two ounces of Prosobee baby formula every three hours. Within 24 hours, it was hard to recognize the baby in front of us. He was up on hands and knees, squealing and laughing. I didn’t know what a truly healthy baby could be like. He felt great for the first time in his life and it showed.

The doctors reassured us that it wasn’t our fault that we didn’t realize how sick Joshua was and that we weren’t the world’s worst parents. They said there are some cases where the babies aren’t diagnosed until after their first birthday. GSD 1 is such a rare disease that it is often incorrectly diagnosed. We were told there would be no lasting aftereffects from the low sugars. They assured us how resilient babies are and that he’d be fine.

By the next check-up a month later, I was confident how good Joshua was doing. Just a few weeks before, he’d not had any teeth. Now he had several. His hair was sleek and thick, and his cheeks were no longer chubby. The doctor told us that the success of his new diet was allowing his liver to shrink to a more normal size.

Now fifteen years old, Joshua is as normal as his disease and the special diet allow him to be. He can easily go seven hours between his cornstarch drinks, which we now mix with Kool-aid. Because of the weird diet and his lack of appetite, he has to take a multiple vitamin with iron every day.

The GSD 1 causes there to be a high risk for kidney stones, but Joshua was recently put on medication to help prevent this. The kidney problems have also caused him to suffer from high blood pressure, and he’s being treated for that as well. Emotionally and physically, there’s much for him to deal with.

As long as Joshua takes his cornstarch, there are no academic problems, but physical activity is more difficult. GSD 1 can affect muscles and cause muscle weakness. Physical therapy is required for some children suffering from the disease, but Joshua has been fortunate to that end. Although some strenuous physical activity is difficult for him, he gives it his all and hangs right in there with the rest of the kids.

I’m proud of how, in spite of all my son’s had to deal with, he rarely lets it get him down. If anything, coping with the GSD 1 has made him more sensitive and considerate of others. He’s forever the underdog, always coming to the rescue of others.

I learned a valuable lesson about myself in all this. I learned that being blind has nothing to do with whether or not I could be a good mother. I not only was able to take care of my baby, but one with special needs. Motherhood didn’t require a working pair of eyes. It just required a heart.

My only regret is that I didn’t act on my instincts much sooner. If your guy is telling you to get a second opinion, get it. Don’t hesitate. Don’t assume someone else knows better than you. Be assertive and persistent, and stick to it relentlessly until you have an answer for every one of your questions.

Although my son does have a serious disease, it can be controlled by diet. If he eats right and keeps his sugar controlled, HOPEFULLY he can have a long, healthy life.

A Mom

A Mom I’ll never forget my family’s hurtful words when they learned I was going to have a baby. “How could a blind person take care of a baby?” This infuriated me, but really hurt my feelings and pride greatly. Yes, it might have been a cruel thing to say, but in reality; most sighted people think this way.

I’m tired of the stigma that follows blind people around. I am surprised any of us can even function because of how we are viewed by most. Yes, we can’t see, but we can walk, talk, hear, smell, touch and especially we can think! I’m not only talking about just blindness. I know there are mothers with all kinds of disabilities who are the best parents but looked at with pity and criticism.

When my son, Joshua, was born, I had no doubts that I could take care of him. His dad helped tremendously, but I was the mom and did most of the care taking. It didn’t take long before I picked up on the little sounds he made, the smells when he spit up or needed a diaper change. I recognized the cries that were just being fussy or there was real distress. I had to give his clothes an extra soak to remove tough baby stains. But all these things are done by all mothers, most just take them for granted.

He was born with an obstruction to the tear duct of one eye. Eye drops were necessary, but I had no problem using them. When he was nine months old, he was diagnosed with a rare liver disease, Glycogen Storage Disease. Thankfully, GSD 1 can be controlled by a special diet. His illness was hard to cope with, but wouldn’t it be for any caring parent? Again, I have heard, “I don’t know how a blind person could take care of a child with special needs.” I just do it like any other mom.

Motherhood is easier before crawling, because they’re not able to get into everything! When this time came, we baby-proofed the whole house. One important thing I learned, if Joshua suddenly got quiet, it was time to check on him! It is amazing how very little ones can pick up on your lack of sight. At a very young age, before he could talk, Josh always put everything directly in my hand when he wanted me to see it. Sometimes I think babies have an intelligence that we can’t even comprehend.

Preschool was a breeze! My guide dog, Cody, and I visited the classroom regularly. We cleaned toys, helped with parties and I did little interviews with each child for the teacher. The little ones are so accepting. Many of the kids gave me things to fix or untangle. They didn’t even consider that I might not be able to do it. I felt more at ease with a bunch of four and five year olds than I did with adults, who always seem to doubt my abilities.

Joshua’s preschool teacher gave us flashcards that had raised letters, which is how he learned his ABC’s. As he got older, he had plenty of homework. Joshua gets frustrated because he is required to read to me, so I can understand what he is working on, but this only makes him a better reader. Maps and graphs are more difficult and usually require the help of his dad or grandmother. I can help with the majority of it, thanks to talking computers, dictionaries and calculators. He gets so mad when I can figure out a math problem in my head or notices when he mispronounces a word. Contrary to his beliefs, it’s not magic or extreme intelligence; it’s only something I had to learn to do. Calculators and computers are not always available, so I compromise with my brain. He won’t let me sign anything, because I can’t write straight enough to suit him.

I had vision until I was nineteen. This helped when Joshua describes something. Memory can be a valuable commodity. Our biggest problem is that I can’t drive. Oh, what I would give for a car that drives itself. Living in a rural area, does restrict Joshua going places, which makes me feel bad. Thanks to his grandmother, aunt, and good friends who help with transportation when his Dad is working.

It is a big job for anyone to be the best parent they can be. It might be a little harder and takes more work for the blind parent to accomplish this. It doesn’t take super-human strength or intelligence; it only takes a great deal of creativity, love and understanding on both the parents and the child’s part alike. If you want to become a mother, no matter your difficulties, don’t let other people’s criticism and doubts keep you from the most wonderful experience of your life. If you have confidence in yourself and the determination, go for it! You can do it!