“We’re Going To Disneyland!” Shield HealthCare Caregiver Story Contest Winner Spotlight
Congratulations to Josie B. of Hesperia, CA on her winning caregiving story!
Josie’s Story:
I can clearly remember the first time I brought my son home from the hospital and was told that I would have to administer all his medical needs. The home health nurse came to my home to walk me through the preparation of getting my son hooked up to tubing and pumps. As she laid out all the tubing, claves, alcohol wipes, pumps, syringes, saline, heparin, cloraprep and so forth on my kitchen island I found myself crying. I was overwhelmed and heartbroken because this would be my son’s new life. That all changed as the nurse gently comforted me and whispered, “God did not plan this unless he knew you could rise above adversity and have the strength to endure and provide the caregiving and love for your special needs son.” From that moment on I had a new positive outlook at life. This was to be the new normal for our family the new normal for our son. Sure, we had to adjust and become extremely organized whenever we planned a family trip. We had to make sure we had all the medical supplies and medication needed for Christian daily TPN hookups. Over time, it became easier with practice and more of a routine incorporated into our new lives.
Our lives changed when I got pregnant and soon discovered that I was carrying triplets. We were overjoyed and scared when our little ones decided to come early at only 31 weeks. Our girls seemed to do fine but at only two weeks of life our son Christian got Necrotizing Enterocolitis. As a result, he was left with only 3 cm. of his small intestine and ending up with Short Bowel Syndrome. My son is completely TPN (Total Parenteral Nutrition) dependent. He receives his nutrition intravenously through a central line because he has hardly any small intestine to absorb the necessary nutrients that the body needs. Christian receives specialized treatment for his short bowel from Children’s Hospital Boston and participates in the Omegaven clinical study to reduce his cholestasis. We travel to Boston every two months for Christian’s medical follow-ups.
It’s been four years since we started this journey together. Since then, Christian’s eyes and skin are no longer yellow in color. He is no longer lethargic and now enjoys playing with his sisters. He loves learning and going to preschool. He is full of energy and keeps us on our toes. His TPN dependency has been adjusted to 12 hours over seven days a week. Although, he continues to have a severe oral aversion to food we are constantly working with his Speech and Occupational Therapists to overcome his tactile defensiveness and aversion to food. His medical team has allowed our son to thrive and enjoy life to its fullest. Our journey has not been easy but we live with the hope that Christian will one day be TPN free and be able to eat on his own.
We are grateful to God that our miracle child is alive today. Every day our lives are enriched and blessed because of Christian. For those reason and many more I truly believe Christian has come into our lives to show us that special children also deserve to be loved. I no longer fear the unknown instead welcome the honor to be Christian’s mother and caregiver. ♥
Click here to read more winning caregiver stories from Shield HealthCare’s 13th Annual “What Makes Caregiving Rewarding?” Story Contest.
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Somehow I saved this article for 2 years and finally read it! Josie is my sister-in-law. Josie and my brother deserve a lot of credit and recognition for being exceptional parents and apparently – exceptional human beings. I have to admit I am absolutely amazed at how they are handling Christian’s issue while also raising his two sisters. I admire the team effort Josie and Richard use on a daily basis. When they come to visit ( yes…they also manage to pack the family and travel 6 hours a few times a year to visit family in northern California ), it is obvious that they are doing something right because in spite of all their adversity…the kids are always happy.