Victor's Journey: Eulogy to a friend

Thursday, December 31, 2009

Eulogy to a friend

Yesterday Dec 30th was the memorial for a remarkable little boy, Errol, a child with disabilities, schoolmate and special friend of Victor. Errol was a true joy who had life figured out and who, like little Victor, spread happiness among all who knew him. For the last week, we have mourned and yet celebrated the life and achievements of dearest Errol, the boy who moved mountains. You can read more about him in his blog: Errol Milner Clifford

Our wish for the new year is that we all learn from Errol and Victor to live in the moment and to enjoy the simple wonders He puts in front of us everyday.

Our 10 year old daughter Sofia wrote the following eulogy for him.

Errol

By Sofia Pauca

What do I see when I think of Errol? I do not see a body, I see a soul. A soul that shall forever dwell in each of us, a happy soul doing things it couldn't do on Earth. Errol's passing away has left a great crater in each of our hearts. This hole is to be filled with sheer joy, as Errol would have wanted it. For whenever something dies, it makes room for something new.

As humans, we have just borrowed energy from the Earth, and someday we have to give it back. But Errol has given back something far greater than energy. He has given back love. Not the romantic love, but the true kind of love, the love that pulls someone in to help another, the love that only shows in times of danger or need. Love is the feeling that compels you to make a difference in yourself, to change yourself for the best, by helping one another. That is what God put us here to do. Errol IS one of God's messengers. A messenger of love. Errol has made a huge difference in each of us, because we loved him.

In each person on the face of the Earth, deep within, there is a sack filled with love, and I believe Errol's sack was bigger than most.

Sofia

Our Vision

We wish to develop a large community of friends around Victor who:

Allow themselves to be filled with the joy that Victor stirs within people who get to know him for whom he really is: a happy child rejoicing in the smallest things of life, reminding everyone to live for the moment,
Accept the differences brought by people and children with special needs as an integral part of society,
Understand the challenges people and children like Victor face and are willing to be advocates for their needs, and
Want to help make a difference in other people's lives by sponsoring research into rare diseases like Pitt Hopkins syndrome.

Victor's Story

This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in August of 2005. He has a deletion of Chromosome 18q 21.2 – 21.32 / Pitt-Hopkins Syndrome. We also have two wonderful older girls who are typically developing. Our family lives in North Carolina, USA.

Victor is a very happy child, who loves to meet and interact with everyone–a true extrovert. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has asthma and has been hospitalized many times due to viral respiratory infections. He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor sometimes holds his breath for a few seconds when he doesn’t seem to be feeling well or is very tired. Victor has developmental disabilities. He rolled over at 9-10 months, sat at 11 months, crawled/bunny hopped at 14 months, stood alone at almost 2 years old, took his first steps at 2, and began walking independently at about 2 1/2 years old. He wears custom orthotic inserts in his shoes to provide proper alignment and added support when walking. He has a little bit of an ataxic gait pattern, and needs help with curbs and stairs.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language —he can understand much of what you say to him, but currently is not speaking yet. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he is beginning to use some signs, putting 2-3 signs together at a time. He also uses a communication app developed by his Daddy for the iPhone/iPad, called Verbal Victor, with much success! We help him learn new things through prompting, repetition, and redirection. Victor loves listening to music, looking at books, playing with tops, watching favorite videos, using the iPad, playing outside, swinging, kicking a soccer ball, going down a slide, pedaling his tricycle and many other things–he enjoys everything that life has to offer! He is a joy and an inspiration to us all!