Airport Journey to Shands at the University of Florida
by Rebecca Conrad

Our hearts beat ninety miles an hour waiting for the plane to take off. “Mom are you okay?” Joshua asked me.

I squeezed his hand, “Okay. How about you?”

About that time, the plane took off down the runway and then lifted. We both held our breaths and hung on to each others hand until the plane leveled off. “We’re on our way,” Joshua said, sighing in utter relief.

We were headed to Florida to spend a couple days with Dr. David Weinstein. Josh was to participate in two research studies. He was the GSD specialist we’d waited for almost sixteen years. We’d met him at two GSD conferences in PA and had the chance to eat out at a Japeneese Steakhouse with him, his family and his staff. Casey and his mom, Lynn invited us to join them. Casey is a GSD friend of Josh’s. They’d been friend for years through phone calls and letters.

Joshua and I arrived at the Charleston airport excited but nervous about flying. Josh was now seventeen. It seemed kind of funny, that he was so afraid to fly. He’d loved flying when we visited Disney. But this time it was just him and me, his blind mom, and I think he was worried about us flying alone.

Of course our flight was delayed. This caused even more nerves because it gave us more time to think. Finally we were landing at Douglas/Charlotte airport that evening. We hadn’t an inkling that this was an international airport and gigantic. Josh rushed me inside and put my hand on a chair. “Wait here, I’ll be right back.”

He was gone without another word. I didn’t even have a chance to protest. I knew our plane had landed later than planned but was shocked when just a few minutes later I heard our flight be called to board. I waited and waited, no Josh. After numerous calls to passeragers they started calling our names. I fumed. Where was he? Could he not hear the calls?

About ten minutes later I heard Josh run up to me. “What happened?” he panted.

“What do you think? We missed our plane!”

“I’m sorry. I had to go to the bathroom and somehow got on the other side of security and they wouldn’t let me back through.”

I stood up and took his arm, “Let’s go find out what we do now.”

A lady found us another flight going into Gainsville but it would be a couple hour wait. We wouldn’t land there until midnight. I called Cathrine, Dr. Weinstein’s research coordinator, and told her what happened. She said she’d be waiting for us when we got there.

We went back to our gate. Once again, he put my hand on the chair and before I could protest, he said, “I have to go again. I’ll be right back.”

By this time if felt like I was in a circus. I sat alone for a few minutes and then I heard a man ask, ”Can I help you?” My name is John and I’m a gate attendant.”

“I’m totally blind and we just missed our plane and my son, Joshua took off again,” I told him in agitation.

“I’m sorry, how did you miss your plane?” I explained what happened.

“So where is your son now? And how did he get on the other side of security?” The attemdant asked with concern. “By the way, is he about seventeen and have on a black shirt with Jimi Hendrix on the front? I bet it’s him, he reminds me of my seventeen year old.”

“Mom, I’m back.”

Before he could say more the attendant warned him, “Joshua, don’t ever leave your mom in an airport ever again. If you need to go to the bathroom take her with you and set her just outside the door. Understand?”

“Okay,” Joshua agreed sullenly. “But it wasn’t my fault that security wouldn’t let me back through.”

John agreed, “I’d like to know how that happened myself. As tight as security is, you shouldn’t been able to get out.”

While we sat waiting for our next flight, I could hear a guy playing a guitar and singing close by. “Mom do you hear that? Can I please go listen?”

“Yes, but don’t go far from me.”

No more than a couple minutes I hear John ask, “Now where did he go?”

I smiled, “He went to listen to the guy playing the guitar.”

“I see him. Good he’s in shouting distance. Well, if you need anything let me know.”

“Can you please help us make our next flight?”

“No problem. I’ll be back in a little bit.”

Joshua eventually came back and slid into the chair. “That guy is really good. He said he was heading to Huntington, WV”

It wasn’t long, John came back and told us it was time to board for Gainsville. The flight wasn’t too scarey. We were exhausted and ready for a comfortable bed.

Catherine waited at our gate. “Sorry for all the trouble,” she said. “As soon as we get your luggage we’re off the the Motel. It’s just now midnight.”

The rain misted around us, the humid air enhanced the scents of flowers, we made it to Florida. Joshua put out bags in the trunk and we piled in, ready for the Motel.

“It rains every night here,” Catherine said. “But it’s sunny every day. You guys will have a great time here.”

Catherine walked up to our room with us and explained that we catch a mini van in the morning that will take us to Shands Hospital. We’ll be there three days and two nights.

The room was awesome. We ordered a meal and went to bed shortly after. We were bushed.

At least there were no more problems making it to the hospital. We found the unit easily. Our room was ready and waiting. We each had our own bed. We were just settling when Dr. Weinstein came in. This was a moment we waited all Josh’s life for. A doctor who really knew what GSD was all about.

We chatted about the research trials Joshua would be part of. The first was a heart ultrasound and it would be done in the morning. The second was for iron and anemia which would start the next night.

“Anything you want Josh, just say the word. We want you to enjoy our unit as much as possible.” He looked at me, “Mom, you get a break too. The nurse will be taking charge of Josh’s cornstarch. This will be a vacation for you too.”

That night we sat with Dr. Weinstein for a couple hours going over Josh’s life and what ran in my husband and mine backgrounds. I still couldn’t believe we were there with this wonderful doctor.

I just finished intensive chemo treatments for brain cancer and felt weak. I slept as much as I wanted. I could relax for the first time in a long time, knowing Josh was in the best care possible.

The two night and days flew by. The last day we went down to the gift shop. Josh bought himself some gater souvineers. He also bought his dad and me something. We arrived back in the room and finished out packing. Dr. Weinstein had promised us a treat that evening.

We climbed into his black suv and he told us where we were going. “I’m taking you to meet the GSD puppy.”

“Wow, really?” Josh asked.

“Yes, the dogs are at the veterinary hospital across the campus.

This experience was so awesome we couldn’t believe what we saw. The chunky puppy with GSD 1 had a feed tube in. She was fed cornstarch through it. She was beautiful and reminded mee how chubby a GSD baby can be.

Dr. Weinstein explained that college kids sat with the dogs around the clock for the feeds. These dogs were being researched for gene therapy. “Maybe some day all our efforts will pay off and we’ll find a cure.”

Dr. Weinstein drove us back to the Motel and told us he would try to take us to the airport the next morning. “But if for some reason I’m late go ahead and take the van. Josh order meal you want or any movie. We want you to feel like a King while you’re here.”

It was sad leaving the hospital the last evening. We were so grateful Josh had the chance to meet a doctor who really understood the ups and downs that goes with this disease. Back in WV, he didn’t really have a doctor. GSD was so rare most doctors didn’t seem interested in understanding the ordeal that a GSD person lives with every second of the day.

We did catch the van the next day, but Dr. Weinstein was right behind us as we walked into the airport. He straightened out any questions about Josh’s corn starch with the airline. He shook our hands, “Josh, it was a great privilege to have you for a visit. Take care and stay in touch.”

Our flight home was smooth. Josh’s dad and grandpa was waiting for us at the Charleston airport. It was great to be home. Josh was on the right track for now but with out a good caring doctor we didn’t know what we faced. If only we lived in Florida.

*I would love to thank every single person who gave Josh the chance to feel normal, even for a few days. Dr. David Weinstein, his staff, and the nurses, I’m forever grateful.

The Most Important Values
by Rebecca Conrad

Being totally blind, I can sympathize a little with how kids who are teased feel. Although I didn’t go blind until I was nineteen, I had some vision loss as a child. I never remember an instance of being teased about my poor vision. Perhaps in the sixties and seventies, kids had more compassion for others.

What has happened to the younger generation of the new century? There seems to be an over whelming lack of compassion for others. Instead, animosity and cruelty has taken the lead for how “different” kids are treated.

My son was born with a rare liver disease called Glycogen Storage Disease 1. His liver has a defective enzyme that cannot break down sugars for the blood. This causes extreme hypoglycemia. He has diet restrictions and has to drink tablespoons of raw cornstarch dissolved in Kool-aid every seven hours to keep his sugar regulated. The cornstarch drinks tends to make him feel full and have affected his appetite. He eats little, but the high calories of the cornstarch have made him overweight. Another side effect of the disease can be muscle weakness. Joshua is slower with strenuous physical activities. He can’t run, but has to jog. Getting over-heated also adds to his lack of energy and weakness.

Since first grade he has been teased and taunted unmercifully because of these problems. I was shocked when it began so early. Never would I have dreamed that such small children could be so cruel. Talking to the teachers and the parents of certain kids did help. But there were always the few kids who just wouldn’t give up. In fifth grade the teasing grew so bad he refused to eat lunch at school and often failed to drink his necessary cornstarch.

He hoped middle school would be different. In the middle school all the county’s smaller schools are combined and he had new kids to deal with. If anything, things got worse. Now, Mom wasn’t allowed to talk to parents or teachers. It would cause him grave embarrassment. My heart broke with his tears of how unfairly he was treated.

We tried counseling. He gained some self-confidence until another encounter with teasing. Then it seemed his defenses melted away. Everyone, including the counselor, his teachers and his family, tried to explain to him, he isn’t the one with the problem. Anyone who feels they have to make fun of others is the one with the problem. He knows deep down this is true, but when it happens it doesn’t make it any easier. Dealing with teasing and taunting day after day chips away at one’s self-esteem.

He is now thirteen and in seventh grade. I prayed all summer for things to be different this year. Things had to change for the better. These kids are almost teenagers. Isn’t it time for them to grow up? Not so. Again, there’s been little change with certain kids who aren’t happy unless they are degrading someone else. For me this has been the hardest part of being a parent. I love my son more than anything and cannot bear to see him treated so. What happened to the values that I grew up with? Never would my friends tease someone because of a disability. I’m not saying it never happened. Teasers have always been around, but it seems as though in the new century they have tripled. It’s like there is a new breed of Americans whose goal in life is to hurt and condemn others. Never do they see their own shortcomings. Is our modern society so closed-minded that the favorite pastime is to make fun of others? With no regard to that person’s feelings? I have heard heart-breaking stories of kids committing suicide because they just couldn’t deal with the taunting any more. Too many times, hopeless teens have lashed out, taking a gun to school. In their troubled minds, it is the only way to get back at those who hurt.

I’m afraid in the busy lifestyle that most of us lead, the most important values are not being taught. How can we expect anything other than what we give? If we are not considerate, can we expect consideration? I firmly believe what ever goes around, comes around. My son has become a kinder, gentler, more thoughtful human being for it. He will often take up for those having a rough time. But I’m deeply concerned about those kids who can’t comprehend or understand cruelty aimed at them. Is this problem not creating a dangerous and volatile situation for the innocent?

I pity the ones dishing out the taunts. What kind of future will these mixed up kids have? We live in a society filled with escalating violence. Is it too late to teach respect and to be thoughtful of others?