Ever since Justine’s birth, I have been told so many negative things. Justine was born with a rare chromosomal abnormality called 4p- or Wolf-Hirschhorn Syndrome. She was supposedly one in about one hundred in the country who had this syndrome at that time. Since then I have found out that many of the things that I was told about her were either erroneous or rare occurrences. I have set out to prove the doctors and all the statistics wrong.
Justine is now for and a half years old and is able to do many things I was given no hope of her ever doing. She is so full of surprises and always makes me smile. When Justine was about four months old she devised a unique way to freely more herself about the apartment. She really enjoyed being able to explore her environment.
At almost two she learned how to sit. One time at the doctor’s office, I sat her down on the table. The doctor instantly reached out to catch her, but to his surprise, she didn’t fall over. He walked around the table with his mouth hanging open. All he could say was, “Oh my God, I don’t believe it.” Doctors never thought she’d be able to sit up by herself. This was the first milestone this remarkable little girl reached.
Now, even more amazing, Justine, who weighs only a little more than sixteen pounds, is able to walk. People are always afraid that she’ll break, or they think that she can’t do anything, but she has a will that just won’t let her give up.
Bops, as Justine is fondly called, has given me and the rest of our family a lot to be thankful for. Life has not been easy for us, but I wouldn’t change mine for the world. Caring for Justine has always been a time-consuming job, but she hardly ever cries or whines. I know she is sick when she starts to complain or cries a lot.
My brother has a two-and-a-half-year-old daughter and he appreciates the fact that his child is healthy. It can really make you think about what you have when someone you love has to work so much harder to do the same things.
Bops is my pride and joy. She’s shown me that there is always some good in life, even when things look bad. We’ve has some hard times. Once, Justine was so sick that she has to be transported by helicopter for her grandparents’ home to the children’s hospital near our home. She looked so helpless.
She was hooked up to a respirator because she has seizures for two-and-a-half hours. It broke my heart to see her like that, but I couldn’t let her know. I had to be strong for her.
When Bops woke up the next day, I was sitting in the rocker next to her crib. Tears were running down her little cheeks and no sound came out of her mouth. I suddenly started yelling for the doctors to shut the machine off. I told them, “She’s going to stop breathing!” They acted like I was crazy, but because of my insistence they began to watch her closely. Much to their dismay, I was right.
Once she figured out that the machine was breathing for her, she started taking fewer breaths. This was on Saturday morning. Sunday they shut the machine off, and by Tuesday afternoon they had released her. From Pediatric ICU to home in five days sounds to me like a little girl who will be president someday!
I have many dreams for my daughter. I want her to do and see everything she possibly can. I won’t let her give up, and I know she won’t let herself give up either. That is why so many people love this little girl. Also, she can sense when somebody needs something. She knows just when Mommy needs a hug or when to leave Mommy alone. I think she can sense when someone close to her is hurting.
For instance, one night three years ago a boy from her preschool class passed away. Justine woke up crying during the night about the same time the little boy died. Since then she has done that on other occasions. I believe that this little girl has a special gift. She can sense when people are hurting or unhappy, and she knows just how to get them to feel better.
Bops will do most anything to make me laugh. From crawling into something to practically standing on her head, she knows just what to do. One time she crawled into a cupboard. She looked so cute that I had to take several pictures. The other day when I was tired and crabby, Justine crawled into a red cart and got stuck. I couldn’t help but laugh at her. She looked so funny all bunched up in the cart.
Then there was the time she fell into the shower- fully-clothed! It was definitely one of her better “stunts”. She looked so surprised. I couldn’t do anything but laugh. She always seems to find the oddest predicaments to get herself into, and she always makes me laugh.
Other times it is her smile. She has this knockout smile that she inherited from her father, and somehow she knows just how to use it to make everyone around her feel better. When we are in the store, people are continually coming up and talking to her. I don’t know some of the people but she does.
Justine will also go to anyone who is willing to take her. She trusts everyone. We have made efforts to show her to take some precautions. When you have a child that is as outgoing and friendly as my Justine, it is difficult to get mad at her when she does something wrong, especially if she follows up by doing something funny.
She still shows no fear, which only justifies mine. I just dread the day someone might hurt her. One of my biggest fears is that she will go up to the wrong people and they’ll take off with her.
Justine has the ability to steal you heart, from her being so tiny to her knockout smile. You’d better watch out or she’ll have you hook, line and sinker. Sometimes I think she should have come with a warning label:
BEWARE! I STEAL HEARTS. by Valerie Dillavou
This story appeared in the Exceptional Parent Magazine, July 1991
Watch Valerie and Justine’s interview at the 2006 National Conference.