I am the proud sister of a deaf brother.

How many of us would love to have grown up with a human being, aside from our parents who would teach us lessons about life and show us how to make better decisions and choices for ourselves? I was lucky enough to have had that opportunity at a very young age. When I was four years old my brother was born.

On February 27th, 1986 my whole world as I knew it changed. I remember my aunt coming over to me where I was playing with my cousins to give me the news that I have a new baby brother. I was so excited because I was going to be a big sister. I did not pay attention to her when she tried to explain to me that my new baby brother was very sick and that I might not be able to see him for a while. All I cared about was that I had my very own brother that I could run around with and brag about to my friends at pre-school.

When I finally went to the hospital where my brother was, I ran right through the natal care unit up to his incubator. I tapped on the window and he looked my way. If my chest was able to swell it would have ripped my shirt. I could not stop staring at him. He was so small; it was only when I took a closer look that I realized something was not right.

I looked around the room for my mom’s guidance and security and I saw them talking with a doctor. My mom did not look very happy. She had a sad look on her face as she came over to me. The otherwise happy moment turned out to be not so happy after all. I was not really allowed in the room and had to leave. I did not quite understand what was going on but I left and that was when reality really started to hit me from all different angles.

The next 14 years turned out to be quite the experience for me. My brother was born with a syndrome called Langer-Giedion. It is a very rare bone disease that causes abnormalities in bone formation.

I am glad to say that after the doctors’ not giving him a day to live he celebrated his 24th birthday this year and he is still going strong.

On his 18th Birthday, which was a big milestone for people with his syndrome, I wrote him this poem:

Time goes by so quickly little brother,

“They” did not even give you a day,

What did it, was all who prayed,

Still, you stayed.

As I saw you in bed

I knocked on your window,

You turned your head.

I told mom you heard me,

She said it was true,

The smells of the hospitals became all too familiar

Knew the nurses by name,

Because to you they always came.

No one could stop you,

You were fighting like mad,

I knew why you did that,

Because I needed you bad.

The doctors did not even give you a chance

But you showed them and in the end all we did was dance.

In your silent world you fought,

With a voice that was mightier than sound.

Times were very hard for me,

But you were never far apart from me.

You taught me to fight even though other’s thought they were right

I know we had to live apart

But you were and always will be close to my heart.

In the past 24 years I have learned so many things about life from my brother that I was able to apply to my own life. I have acquired skills that I would not have had if it was not for him. I have used these skills to help children from all walks of life learn to set and achieve goals. In short, I try to be the person my brother was for me when I work with children.

Some helpful information about the syndrome:
http://www.healthline.com/galecontent/langer-giedion-syndrome