Miguel's Story

miguelWhat do you see when you see my son? I see one of the most amazing children I have ever known. His story is amazing. Miguel made a dramatic entrance into the world. My appendix ruptured while I was 22 weeks pregnant. Due to complications of my appendix rupturing my body went into labor. The doctors prolonged it as much as they could. He was given a 20 percent chance of survival. That percent scared my husband and I. Miguel did not care, he was coming like it or not. My water broke at 23 weeks and 3 days gestation. I’ll never forget how scared I was. I was not able to deliver him in the nice rooms that looked like living rooms. I was in a real procedure room. This room was attached to the NICU. There was a staff of nurses standing by waiting for him to be born. He was popular even before they knew him. He was born only weighing 1 lb 5 oz. He was so tiny and red. Immediately after delivery, he was whisked away. My heart was so heavy. Our baby was so tiny. We had no idea what we were about to encounter.

Miguel was tiny but he was a natural born fighter. He fought to come out earlier and now here he was. Now what? He spent several days in the NICU. He was very sick and very small but very loved. My husband and I were willing to do anything to insure his survival. Miguel underwent many surgeries. He had multiple eye surgeries, hernia repair, chest tubes heart surgery and those are just the surgeries that he had while in the hospital. He was in the hospital for 96 days. I really think those were the longest days of our life. It was very hard to leave him every day. My heart never left him. The scariest part about the hospital is we never knew what we were going to walk into. One minute Miguel was fine and the next, well I don’t like to think about those days. Those were the days you had to fight back the tears and be strong.

Many days were spent in the NICU. Perched on a chair and holding his hand through an isolate. We weren’t able to hold him for a long time. Our job was to be there and talk to him and let him know we were there. It was while he was in the hospital we knew he had problems with his hearing. He was tested and failed. So several other tests were performed confirming his severe hearing loss, While in the hospital his vision also became a concern. We knew that he would have poor vision in one eye and limited to no vision in the other. Although his vision and hearing were concerns at the time they weren’t heavy on our minds. We were more concerned with his general health more than anything. We knew that the other issues would soon be dealt with.

Miguel spent a lot of time in and out of doctor offices. His health was pretty good. We just kept him isolated from everyone. We spent a lot of time at home away from germs. He was fitted with his first hearing aids at 6 months of age. He knew he needed them and was very good about wearing them. Early on we decided that the auditory-verbal approach was the approach we were going to do with Miguel. Aided he had between a 30-35 decibel loss in his right ear and slightly lower in his left. Miguel was involved in First Steps and therapy almost immediately. He had a lot of intervention. I am very thankful for all of the therapists who gave us support and wonderful ideas to work with Miguel. We were questioned a lot as to why we were taking the auditory-verbal approach with Miguel. I think it is really important to mention that we live in a seeing and hearing world. Our goal for Miguel was for him to integrate into this world as fully as possible. This approach worked out good for Miguel.

Miguel started school and attended a wonderful elementary school. The school was staffed with awesome teachers and principal. Everyone had Miguel’s best interest at heart. We were very nervous to send him to school. Questions like: How will he be treated? Will he fit in? So many questions arose in our minds. Miguel never met a stranger. We were extremely pleased with his progress there. We also involved him with Challenger Little League. He played for about 5 years and then he said he retired. He played piano for several years. He also played the clarinet and violin. He lost interest with that. He had a few more surgeries over the years and came through them like a champ. He also developed epilepsy. This became yet another challenge for Miguel. We had to worry about seizures and different type of learning strategies because this caused issues with how he was learning.

Miguel is very social by nature. He only has a handful of friends though. I believe that because he misses so many cues being both hearing and visually impaired it makes it hard for him. It makes me very sad sometimes. He is such a wonderful kid with so many great attributes. Unfortunately, even though we say we are an accepting society there is still a social taboo if you are not “normal.”

As Miguel transitioned into 5th grade which is middle school things changed. Life became even more complicated. There were a whole new set of people to work with. Some were very wonderful and some were not. As wonderful as we know Miguel is schools tend to look at our children differently. They want our children to fit in. They want them to just sit down and do what their told. Unfortunately it doesn’t work like this. Miguel needs minimal accommodations. He uses an fm system and requires preferential seating. If these things are not done chaos arises.

Currently Miguel is in the 7th grade. He is totally mainstreamed and does pretty well in school academically. Some things come easier than others. He struggles in some areas and still has minimal friends.

I’d like to return to my original question. What do you see when you look at my son? I’d like you to think about the things I just told you. I think my son is amazing! I think he is a handsome, lovable young man who has overcome great obstacles. He always has a story to tell and a smile on his face. He is happy go lucky and loves almost everyone. He continues to give everything his all despite his disabilities and negative attitudes from others. We are very proud of him. He has dreams of becoming a voice actor and cartoonist. I believe he can do whatever he sets his mind to.