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Una publicación sobre discapacidades visuales, y sordera y ceguera, para familias y profesionales.

Spring 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Connie Vasquez, Parent, McAllen, Texas

Editor's note: Each time I hear a family's story I learn more about the gifts of life. I think it is important that we share these stories with, not only other parents of children with disabilities, but also teachers, doctors, legislators and community members. Those of us who are professionals in the field of special education sometimes forget that the general public has little, if any, experience with disabilities. To them the world of disabilities and chronic illness is a foreign, scary place. They need to understand that it does not need to be. Children with disabilities and their families can have better lives if we care enough to hear them and provide the support they need.

We were living in McAllen, Texas, when we found out I was pregnant with our first child. Like most first time parents, we were excited and a little nervous. The pregnancy seemed to go by normally. I had the usual miseries, and I got a virus I couldn't seem to shake about the third month. I didn't even mention it to the doctor. I figured the extreme fatigue was just a result of pregnancy, and the chronic sore throat was just allergies.

I prayed that there would be nothing wrong with the baby. We had all of the usual tests and ultrasounds and everything seemed normal. Yet something told me that something was wrong. I guess it is that sixth sense we sometime get.

On April 15, 1993, Franky was born after a normal labor and delivery at 38 weeks. When he was brought to me, I was surprised at how hard it was to change his little shirt; his arms were so stiff. I chalked it up to inexperience. The next day my doctor came in to tell me that Franky's head was too small for his body. She was hoping that the bones in his skull had fused together and that an operation might separate them. I thought to myself, if this is the best-case scenario, what could be the worst?

After a MRI was done, the neonatologist came in to see me. He told me that there was brain damage and they didn't know what problems Franky would have. He mentioned epilepsy, cerebral palsy, blindness, deafness, etc. He said that we would have to wait and see. He also told me that it wasn't fair for him to have to break the news to me, since he didn't know me. I guess he thought it was fair for me to hear the news!

Of course, I spent a lot of time crying. I had to break the news to my husband when he came. I wish he could have been there when they told the news to me, but I guess the doctors never thought of that. The nurse saw me crying and told the hospital's psychologist. She came to see me, and asked what was wrong. When I told her, she just told me to call if I needed anything. There was no sympathy, and she never came back to check on me. I guess she wasn't qualified for real problems.

Just as I was to be released, another neonatologist came in to see me. He very callously told me that my son would never be anything but a vegetable and would never know us. He advised us to take him home and wait for him to die. He said that Franky would probably die in his sleep of SIDS. He added that we needed to come by his office the next day to give him our decision as to what we would do when we found him dead. He also told us that Franky had a urinary tract infection and would need to stay in the hospital for 7 to 10 days. I asked to see him before I was discharged. He told me that was impossible because Franky already had been transferred to an intermediate neonatal nursery. I was naive enough not to fight him.

During this time, the only comfort we received was from my personal physician, Dr. Bertha Medina. After the neonatologist left, she started crying. She told us that her first child had died from a brain defect. She cried with us; then gave us some advice that we have never forgotten. She told us that this crisis would either make or break our marriage, and we had to make sure that it brought us closer together.

We found out that the CMV virus, which I had never heard of until then, presumably caused the brain damage. It most likely happened when I felt so sick at the end of the first trimester. No one caused it, and no one could have prevented it. Even if we had known I had the virus, the doctor could not have done anything but suggest an abortion, which we are completely against. All it would have done was make us dread his birth. I am glad we did not know until after he was born, but relieved that we found out right away.

Over the next few days we broke the news to our family and friends. My mother-in-law, who came to help me said, "He is family, and we love him no matter what problems he may have." We got lots of moral support from our church even though we had been members for only a short period of time. We got mixed reactions from our friends. Some were sympathetic and caring; some were indifferent. Others felt like somebody was to blame even though there was no evidence of it. They said that the doctor had to have done something wrong. One of my closest friends even suggested that it was my fault. We found out who our true friends were.

We found out that the stiffness and difficulty in dressing Franky was due to cerebral palsy. When he was three months old, we found out he was blind except for a little peripheral vision. He is deaf in one ear, but the other ear is fine. He has profound mental retardation.

When Franky was about six weeks old, he started screaming day and night. We thought it was colic, but it didn't go away. When he was nine months old, he had his first visit with a neurologist. He told us that the screaming was normal for a child in Franky's condition and recommended trying Klonopin to calm him. We hesitated to drug him as he had just started smiling, but we decided to try it for a few days. After a trial period, the only complaint we had was why didn't someone prescribe it before? One of his therapists was opposed to this drug therapy, but she didn't have to live with him day and night. He became a happy child. He began to laugh at every little noise. Our lives changed overnight.

Franky's muscle tone is extremely tight, and the cerebral palsy affects every part of his body. We would spend all day trying to feed him. When his was three years old, we made the difficult decision to give him a feeding tube. We didn't want to take the easy way out. Although it did make feeding a lot easier, Franky developed severe reflux. Every time he gets a cold, he gets a vicious cycle of congestion, coughing, and reflux, which causes more coughing and more reflux. Now we have found that reflux itself causes congestion.

Franky has a neurogenic bladder; so I have learned to catheterize him. I have also learned to suction him, change his feeding tube and do all kinds of things I never expected to do. Sometimes I feel like a doctor. Franky takes eleven medications every day for reflux, muscle relaxation, bladder spasms, asthma, seizures, etc. When he is sick, he takes even more. Last year I filled more than two hundred prescriptions for him in a twelve-month period.

Now that Franky is seven years old we thought that the threat of SIDS had gone away. This year we found out that it has actually gotten worse. A sleep study showed that he has severe apnea. His chin is receded and his palate extends way back into his throat, which narrows his airway considerably. If he isn't in just the right position, he will stop breathing, even when he is awake. He has an expensive wheelchair that he is unable to use. We have never been able to adjust it to a position that doesn't restrict his breathing. We have been told that it is likely he will die quietly in his sleep. The ear, nose, throat specialist told us that the only solution is a tracheotomy. However, he warned us that because of Franky's sinus problems, the only feasible way for him to have a trach would be to institutionalize him. That is not even a possibility for us.

My experience with the medical profession has been mixed. We have lived in three different parts of the country since Franky was born; so we have had various experiences with doctors and nurses. There are some very compassionate doctors and those who are hard and almost cruel. Many are indifferent. I guess they don't know how to react to a child who is not "normal." Franky goes to a large clinic with several pediatricians. Because he is on Medicaid our options are limited. We ended up seeing a physician's assistant, Ms. Jeanne Russell. At first I was hesitant, but after four years we feel very comfortable with her. She is very knowledgeable and doesn't hesitate to ask the pediatrician's advice. However, we have found that if she doesn't know, the doctors don't know either. I mention this because, children with special needs sometime require more time and attention than a busy pediatrician can or is willing to give. With Ms. Russell and other physician's assistants I have dealt with, I always feel like they have more time to spend with me. Ms. Russell is always willing to listen to my opinions and questions. I don't feel like a bystander.

We have lost and gained many friends over the years. The friends we have are those who are there for us. No, they don't always have the time or the ability to help with Franky's special needs. Sometimes they are nervous around him and don't know the right thing to say at the right time; but they give us a shoulder to cry on, pray for us and help with our other two children. They don't say, "I know what you are going through," because they don't know. Our lasting friends are there for us when we need them.

A pediatrician recently offered to help us place Franky in an institution. I know that some people have no choice, and I cannot judge those who have had to make that difficult decision. But as long as I am able to take care of Franky, he will be at home with us.

We love Franky very much. When he was born, I could not imagine living with a helpless child who would remain in diapers. It was a comfort to me that he wouldn't live long enough for us to face that reality. Today we cannot imagine our lives without him. I know that some day he will be in a better place, where there is no suffering. Until that day, we will enjoy every minute we have with him.

Please feel free to contact Francisco and Connie Vasquez by phone at (903) 758-3189 or by mail at 905 Dudley Street in Longview, TX 75602.