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

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

By Connie Vasquez, Mother, Longview, Texas

In the Spring 2000 issue of SEE/HEAR I wrote the story of our son Franky. In case you didn't get a chance to read it, here is a brief summary. Franky was born with microcephaly, calcifications of the brain, blindness, deafness, severe developmental delay, cerebral palsy, seizures . . . Over time he developed severe reflux. Not only that; his jaw was receded and his soft palate extended way into his throat, constricting his airway considerably. He had to be catheterized, suctioned, tube-fed, plus he took about eleven medications 2-4 times each day. We had been warned that he could die of pneumonia or apnea (stop breathing).

I was very saddened to read a few months back of the problems people have faced taking their disabled child to church. I know some people don't consider church a very important part of their lives. Still there are those of us who find our strength and comfort in church. To those of you who have encountered difficulties, I encourage you to keep looking. There are churches out there that care; I know from experience. We have lived in three different places since Franky was born in 1993 and belonged to three different churches. We have never encountered difficulties because of Franky's disabilities. In the first two churches, Franky was usually in the nursery. The ladies spoiled him rotten. When Franky was two years old we moved to Longview, Texas and joined the Longview Baptist Temple. We became part of the Spanish and the English church. The English church is very large with four nurseries and many Sunday school classes. The nursery superintendent told me I could put him wherever I wanted. As he grew older, we decided to put him in Sunday school to stimulate his development. Most recently he was in the three year old class. The teachers accepted him eagerly and encouraged the other kids to interact with him.

Eventually we put him in the regular church services. He was very noisy sometimes. His breathing sounded like a loud snore. When I asked the pastors what to do, they told me not to worry about it, everyone would get used to it. No one ever complained or asked us to take Franky out of a service; although I have chosen to do so on occasion, especially when he threw up!

When my daughter, Teresa, was born on a Saturday evening, it was the Spanish pastor's wife who took care of Franky, making sure he got his food and medication. When Teresa had emergency surgery on a Sunday at seven weeks of age, one nursery worker dedicated her whole time to make sure Franky got fed. Now we have family living nearby. As Franky became more difficult to care for we did not use the church people as much, but they were always there for us, praying and giving moral support. Their support, that always has meant so much, became a lifeline as Franky's health and quality of life rapidly began to decline.

When Franky was awake, the only way he could breathe without struggling was if we sat  him in front of us and pushed his jaw forward to open his airway. However, his left hip had become dislocated, so sitting for any length of time was very painful. He became very fussy, and we tried changing his medicines and dosages. It didn't help. It got to the point where the only time he was comfortable was when he was sleeping on his stomach. Unfortunately, his feeding tube had become enlarged and lying on his stomach caused it to leak. The surgeon experimented with different sizes of tubes; each would last about a week before it would start leaking. The entire contents of his stomach would leak out in just few minutes.

Franky was miserable, and it was only getting worse. As much as we loved him, we were beginning to realize it was time to let go. The pediatrician suggested a "do not resuscitate" order. After much advice, thought, and prayer we decided that was best for him, no drastic measures to revive him would be taken.

In three weeks time Franky got a kidney infection, pneumonia, a staph infection, and a fungal ear infection. He was deteriorating rapidly. He came down with a head cold, and I took him to the doctor just to be on the safe side. Everything checked out fine. Early the next morning Franky seemed fine, but by noon his breathing sounded rough. His temperature rose to over 107 degrees! Since my other children were at home with me, I called an ambulance.

When we finally were able to see Franky at the hospital, they told us he was dying. The pediatrician met with us to explain that the x-rays showed a mild case of pneumonia. She felt that either the bacteria had entered his bloodstream causing overwhelming blood poisoning or it was meningitis. His white blood count was low which meant he wasn't fighting it. She didn't give us much hope. He had a seizure that lasted about an hour, and then he fell asleep. A short time later Franky decided to go to heaven even though they tried briefly to resuscitate him.

Our friends, our church, the East Texas Angel Network, and even total strangers rallied around us. We had a beautiful funeral that, thanks to the Angel Network and our church, cost us almost nothing. Their support continues to see us through.

It has not been easy losing our "baby." We loved him dearly. I never really minded carrying him, feeding him, cleaning up after him, giving him medicine, going on constant doctor visits, or any of taking care of any of his needs. But when he started suffering, I couldn't bear that.

We know he is in heaven, where there is no more pain or suffering. I see him talking, taking his first steps, running, and jumping. I would never wish him to come back, though I miss him terribly. Sometimes I wish I could hug him one more time, run my fingers through his hair, and kiss him. He is in a better place. I know I will see him again some day.

At Franky's funeral the church was nearly full. Many people took off work just to come. 8 They all did this for a boy who never spoke a word to any of them, but something in his life impacted their lives. I know that without our church, we could have never made it through this loss. I encourage you other parents who want to find this kind of church community not to give up. Keep looking until you find a church that can make a place for you, your family and your child with a disability.