My name is Gina. Gina Pizzucchini. I live with my husband, Mark, and our four children in Winter Park, Colorado. My husband is a janitor; I, meanwhile, stay at home with the children. I'm a domestic engineer (i.e., a homemaker).
We have two boys, two girls. The girls are both older than the boys. Their names/ages are, in order of appearance: Christina Maria (13), Izabella Antonia (10), Mark (Marko) Luciano (7), and Colby Shane (3).
Thank God three of the children are bursting with health. They're hardly ever sick; they're happy, energetic children who love life. As for our youngest, unfortunately, he may never get that chance. You see, he was born severely handicapped, and caring for him is a struggle at times.
Our youngest child was born with a serious physical disability. He was born with microcephaly. Microcephaly, in layman's terms, simply means that he has a smaller than average head. It presented itself at birth, and it was one of the worst moments of our lives.
To further explain the condition, microcephaly means that the circumference of the head is smaller than average, for a person's age. It may be congenital (as Colby's was) or it may develop within the first few years of life.
The disorder can be caused by any number of things, or from conditions that cause abnormal brain development, (such as, for example, fetal alcohol syndrome or rubella), or from syndromes associated with chromosomal abnormalities.
Life expectancy for individuals with microcephaly is often reduced, and prognosis for normal brain function is oftentimes poor. We are seeing this in Colby's situation. The prognosis does vary, depending on the presence of associated abnormalities.
Our son had a reduced head size when born. His head failed to grow, even as his face continued to grow at its normal pace, giving him an odd appearance. This is why he doesn't look like most kids. He has a small head, a receding forehead, and a loose, often wrinkled scalp (this would be seen if he didn't have any hair).
As he grew older, his head size became all the more obvious. His body, in kind, is smaller than average; he is underweight and dwarfed.
He hasn't really developed all that much. At the age of three, Colby is more like an infant. He can say one or two words ("mama" mainly; he also says "da-da"), and he will probably never be able to walk. He is profoundly mentally disabled, and when up, he is in his bed or sitting in his snazzy new wheelchair that some loving friends got him for Christmas. He has seizures and is spastic. In addition, he is tube-fed; it's easier for him (and for us, as he doesn't choke nearly as often).
Caring for a child with such significant disabilities is difficult at best. There are days where I wish that our son was dead; yet on others, I can't get enough of being around him, as he makes me laugh. Thank God I have help in my older children, and also from Mama when she comes for a visit. (She's here now; she was here for Christmas. We had a most lovely Christmas, especially when Colby got his wheelchair.)
We have a wonderful support system in our church, and I belong to a group of parents who have children like Colby. I don't feel like I'm alone, and I realize that there are other people who are facing the exact same thing as I am. We call each other or e-mail one another if we have a question or feel like bouncing off someone when one of us is facing a bad day.
It's worse when Colby's sick or in the hospital. He's prone to pneumonia or any other respiratory illness; it's often a frightening time when he falls sick. Sometimes it's gotten so bad he's actually turned blue or stopped breathing; it's one of the worst experiences that can happen to a parent. He's nearly died several times; thank God he was able to come back to us; it just makes time with him all the more precious.
We don't know how long Colby will live, but we plan on making his life a joyful one. This is why we take him to the zoo or to the pool in the summer, or ice skating and seeing the Christmas lights in the winter. We take him out to eat every Saturday; our family is a regular fixture at the local Denney's or Cracker Barrell. The servers there all know us, and they love Colby nearly as much as we do. He is a very popular guy!
Sometimes (more often than not), we get stared at or hear people make unkind remarks about our son. It truly hurts us, but we learn to soldier on, and realize that they're the ones with the problem. If they can't accept our child, then we don't want to have anything to do with these rude people. Our son is our business, and he is very important to us.
At church, Colby greets the people as they come in. He will give them a huge smile and (clumsily) shake their hand; it doesn't take long for people to smile back. Our son has the prettiest eyes, and his smile could light up the entire planet, it's that bright. Sometimes he'll giggle or do one of his famous squeals; that shows he is truly happy, estatic.
Well, I will go for now. I will write more about Colby in the near future. He has been nothing but a miraculous blessing in our lives, and I feel honored that I have been chosen by God to be his mother. All of our children are miracles, but Colby has that certain something that makes him unique. He is certainly one of a kind!
~Written by Gina Pizzucchini, Winter Park, Colorado. (Mom to four fantastic kids!!)
