Solutions
To Your Caregiving Situations
Throughout Your Caregiving Years
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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Someone
Like You:
Terri Jones, Clemmons, N.C.
Care Recipient: Bradley, the 10-year-old son of Terri and Bill Jones, who was born with dwarfism and rare complications, and who has a tracheostomy and ventilator.
Nominated By: Joan Church, R.N., Bayada Nurses Excerpt from Nominating Letter: Ever since the very first time I met Terri and Bradley, a baby at the time, I have known that I was placed in a home where growth would be astounding both within the family and for myself. Bradley was just home from having had surgery at John Hopkins and we were being oriented to his care by the respiratory therapist for his ventilator. Terri seemed to be in such a state of calm and acceptance of the fact that life would be ever changed; and, for Bradley's sake, that change had to be accepted as the norm. How does one accept as the norm life on a ventilator and such extreme limitations as he would face? If you are Terri Jones you know who is in charge and you hand your burdens and fears over to Him. I believe it is her strong faith in the love of the Lord that Terri was able to set off on the journey of her and her families’ lives. In Terri’s Words:
When I feel stressed, I: Try to be easier on myself. I ease up on myself and go to bed earlier.
My current challenge is: Finding quiet time for myself.
When I have an extra five minutes, I: I do a load of laundry, I try to squeeze in one more thing. (“That’s so bad,” Terri added. “I’m going to try to change that.”)
My mantra is: God is in control. He loves each of us; He will not forsake or leave us. If I put my trust in His hands, it’s wonderful. If I try to take control, it’s like building a house without plans. His plan is so far greater.
The legacy I would leave to another family caregiver is: Never give up. There’s caregiving—and then there’s the other side. They (care recipients) need to have you fight for them, to not take “no” for an answer but not be ugly about it. The squeaky wheel does get the oil. You have to keep on in a respectful way until you get another answer, the answer you want. It takes energy, it takes time and, some times, it has to be tabled for awhile. But, never give up.
My 2005 goal is: Be together as a family, be happy and healthy.
My holiday plans this year include: We’ll be celebrating Bradley’s recovery (Bradley had surgery in November and returned home just before Thanksgiving). Terri remembers what was like for her and Bill, when they brought newborn Bradley home to his older sister, Kristen. They were overwhelmed. Only home for a few days, Terri turned to her Sunday paper to look for a support group and found a six-week support series for parents of children with disabilities. They went to their first meeting the following Tuesday. “Our family and friends couldn’t understand. But the support group members did,” Terri says. “The conditions affecting our children were different. But, the emotions were the same. We weren’t alone.” Bill and Terri remain an active part of that support group, Parents Together, a spin-off of another national group, Parent to Parent. When Kristen was seven and Bradley three, Kristen really began to understand the situation at home. She left notes for her parents that she felt alone. She began stuttering. Terri tried Christian counseling, but that wasn’t working. Finally, Terri learned of an organization, through Parents Together, called Sib Shops, which sponsors special evenings for siblings of medically fragile children. On these special nights, the siblings enjoy fun, games, and most important, support and sharing. “From then on, after her first Sib Shop, she knew, ‘I’m not alone’. We felt that when we attended our first support group meeting,” Terri says. “She needed that, too.” For Terri, having the support of other parents with medically fragile children lessened the loneliness. But, the grief was still there. In a handbook for parents from Little People of America, an organization that supports people of short stature and their families, Terri read: Mourn the death of the child you expected, then you’re ready for the child you received. Initially, that mourning was part of her day-to-day, even hour-to-hour, life. Over time, the grief lessened, to weekly, then monthly, then annually. “I can’t remember the last time I felt that,” Terri says, “that sense of grief. Sometimes, a trigger, such as discrimination, will trigger it.” Terri and Bill have made creating a normal life for Bradley a priority. Bradley began his school career in a pre-school for physically-challenged children and then moved to a regular school for kindergarten. He now attends fourth grade (a nurse accompanies him to school) and enjoys shopping, action movies and books. The family seemed complete--Bill, Terri, Kristen and Bradley--until four years ago. Terri had thought about more children, but, she says, “My heart had broken. I couldn’t put my heart back out there again.” Until one day Bradley asked his mom about the possibility of a baby brother. “I’m going to pray for a brother,” he told his mom. A few minutes later, Bradley reported: “God said ‘okay’.” And, a few weeks later, Terri learned she was pregnant. Terri and Bill opted to learn of the baby’s sex during the routine ultrasound. When the doctor said, “It’s a boy”, Terri turned to Bill and said, “Why did we do this? Bradley already told us the baby would be a boy.” Michael joined the family four years ago. “Michael is restoration,” she says. Kristen is hope. And, Bradley is faith. Meet our Other Winners: And, meet winners from previous years: 2003 Winner: Kathryn 2003 Winner: Joan 2003 Winner: Diane 2003 Winner: Elizabeth |
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Publishing Co. 1996-2003 |
