They say to lose a loved one is a very tragic thing, but to lose a child is the most tragic of all. I recently had friends of ours lose their 16 year old Down Syndrome daughter, Janine, to pulmonary hypertension. She was at home with her parents talking and enjoying the day and the next minute her heart stopped. Her father is a paramedic and revived her. She then had another episode, and at that point they placed her in the ambulance to transport her to the hospital. She again came to and looked at her dad and asked him where her glasses were and where her mother was. Her mother happened to be right behind the ambulance. That was the last words Janine ever spoke. Her father was next to her holding her hand when she died.
Janine came into our families lives at Fort Riley, Kansas. Her dad, Gary, and mother Josie, were in the commissary and my wife spotted her in the isle. We have a Down Syndrome son, Travis, and my wife spotted Janine from all the way down the isle. She said hello to Josie and Gary, and then picked Janine out of the stroller and began to play with her. Josie looked at Ann and Ann then explained to her about Travis. Ann got Josie’s number and they have been friends for 16 years. Josie used to bring her over to the house and I would make her laugh by acting goofy. We have since moved away from Fort Riley, but Gary and the family have stayed in Junction City since he retired back in 1998.
Janine was a very active girl who loved riding horses and being out on the farm with her two brothers, Jonathan and Josh. She took care of her horse and learned to ride well. She participated in rodeos and won several medals. She also loved to play video games and eat spaghetti. She also liked getting her two brothers’ in trouble and letting them know when they were bothering her.
The funeral was packed with people from Gary’s work and Janine’s school. They played a video tape with music of Janine growing up and had several pictures of her with her horse and having fun at the lake. She had an open casket with her Barbie doll, glasses, boots and rope lying around her. She did look beautiful and innocent. Travis went up to the casket, leaned down, and gave Janine a kiss on the cheek. He then turned to Josie standing beside him and said “There, now she won’t be cold anymore”. He then turned back to Janine and said goodbye.
We went to the house after the funeral on February 2nd, and found Janine’s room to be like that of a typical teenager, except it had a young girls touch to it. Janine may have been 16, but she still kept her little girl dolls and doll house out so she could play. There were pictures of her all over the house. In all of the photographs she was smiling and looked happy. Not one of the photographs showed her without a smile.
I now only have one question. Why is someone so innocent, with only love for everyone in their heart taken from us so soon? I have never met a Down syndrome person that knows what revenge, grudges, and hurting some one on purpose means. They know what anger and sadness are, but they also know how to make someone feel better with just a smile or a laugh. I ask this question to justify my emotions.
There are people in this world that hurt and destroy others and live a very long time, but Janine was not one of those people. Down Syndrome people are born to make others enjoy life. To remind them that no matter how old you are, you still need to be a child once and awhile and have fun. Janine and Travis are like that every day. They remind us not to be so serious, to stop and say hello or give someone a hug to make them feel better. I asked myself this question. Why is it necessary for some one like Janine, a person who enjoys life, makes other happy, and only brings joy to those around her extinguished at the age of 16? I can not answer that question but I do know that it is a travesty.
Janine’s loving memory will go on, and I hope that Gary and Josie will continue to share their stories about Janine’s life to her brothers. She was the oldest child to Gary and Josie, but she will always be little Janine to us no matter how old Ann and I become.
Jim Crockett
