Speaking from the Heart: Jaymie’s Story

     When our daughter was born, doctors told us that she had only months to live due to many major complications. It was the kind of news you never want to receive during a time that is supposed to be filled with joy. We were shaken beyond belief and thought about all of our options. We probably went through every emotion a person could go through all in a short time. We wanted to spend every minute we could with our baby and everything else in the world seemed so distant including jobs, friends and even ourselves. The months came and went along with the doctor’s appointments and medical visits. Our daughter was holding her own and somehow seemed to have overcome the odds. Although we knew she would never get better and would never live a life like most other children, she seemed to have become a little stronger as she made it to her first birthday.

     Having come that far, I looked back and realized how much my life had changed. I knew of few other parents who could not really go to sleep for fear that a seizure or respiratory attack would occur to their child at the very moment Mom tried to get some rest. I knew of few others who had to constantly fight with insurance companies just to get basic supplies for their child. Most of the people I knew would simply go to a grocery store to buy what they needed. Most of the other families I knew would go to their pediatrician for a well check. I would spend days or weeks at a Children’s Hospital and sleep bedside or in area designated by the hospital because a simple cold turned into something catastrophic.

     Home nursing services soon became part of my life. It allowed me to work and provide for my family while I knew that a person who was kind and loving and could provide for my daughter’s skilled needs was with her when I could not be. As great as this program is, it needs help too. There are either funding issues with payer sources or just not enough nurses. It is not unheard of to go consecutive days or nights without a nurse and sometimes with little notice of a call off. This makes having a job very difficult. Imagine what it is like when you are to be at an important meeting and you need to call off from work because your child’s nurse called off an hour before she was to be at your home?

     I have simply chalked everything up to doing what is best for my daughter and taking everything day by day and not planning most things too far ahead. I also know it is important to stand up for those who don’t have a voice and promote the importance of all of the programs that help individuals with special medical needs. I have lived this life for almost 10 years now and know it is the right thing to do, not only for my family, but for the many other families out there like mine.


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