It wasn’t at all what expectant mom Valerie Jones was expecting to hear.
At 25 weeks, Jones called her obstetrician with some concerning symptoms, and he advised her to go to the hospital. “When I got there, they told me I was in labor and I wasn’t leaving,” Jones said.
It wasn’t long before Brooke and Camille were born, weighing in at less than 2 pounds apiece. Their early arrival was just the beginning of a long medical journey that started in July 2006.
While Brooke went home about three months after she was born, Camille faced a seemingly endless series of medical challenges. Starting with a brain bleed found just days after she was born, the tiny baby girl endured 10 surgeries in the first year alone.
Valerie and her husband, Eric, couldn’t help but be overwhelmed trying to meet the needs of then 3-year-old big sister Sidney and infants Brooke and Camille.
“When I read my diary from that part of my life, I don’t recognize that person,” Jones said. “We were just trying to get through it the best we could.”
The challenges remain, but, six years later, they are more manageable. Camille, who has cerebral palsy and a mild cognitive delay due to vision problems, has endured 17 surgeries but only one in the past two years. Brooke has also had some physical issues to deal with as a result of her early arrival, although none as severe as Camille’s.
Both girls have found the care and support they need at United Rehabilitation Services of Greater Dayton. URS has been providing physical, occupational and speech therapy for the girls since they were just 2 years old.
The Jones twins are this year’s ambassadors for the annual URS Rubber Duck Regatta on Saturday.
“It (URS) was a perfect package because we could go to one place for everything,” the Clayton mother of three said. “You want to be around people who understand your situation, and we found that there.”
Advice from Jones
While Jones is the first to admit that caring for the girls has become easier as they have gotten older, the challenges remain — and she has some advice to share with parents who are facing similar challenges.
Give yourself a break. “We made a lot of life-and-death decisions that first year and, sometimes, we went against the doctors, which can be difficult to do,” Jones said.
The stress, the decisions and just the fatigue can take its toll on even the strongest parent. Jones stresses the importance of having a good partner, whether it’s a spouse, a parent or a friend, to help share the load.
Find someone who has been through it. “You need someone who can let you know that your feelings and your fears are real,” she said. “When you find out you’re having a baby you envision (your child) as a genius, mixed with a gymnast, who is going to be the next president and when you realize that isn’t going to be the case, it can be hard to deal with.”
Find a place where people understand your struggles. This is essential, as is having other parents to talk to. Parent support groups can provide camaraderie in a caring environment. “Friends can become a source of therapy and, as a parent, you need that,” Jones said. “You get an opportunity to talk about stuff with people who understand what you are talking about.”
Find area resources. Going it alone can add to a parent’s stress. There are a variety of local agencies that can help parents find the care and resources they need for their family.
While parents with a healthy child can usually find baby sitters with relative ease, the same is not always true for families with special-needs children. “People are scared to keep them,” Jones said. “They don’t want the responsibility.”
From an infant care center to a youth and adult latchkey center, URS provides care for all ages, which gives parents like Valerie and Eric a much-needed break.
Be real about what is going on with your kid. While Brooke rolled over at 10 or 11 months, it was at least six months later before Camille could do the same. “Some parents are in denial,” Jones said. “That isn’t good for anyone.”
Jones is a strong advocate of getting children into therapy programs as early as possible and not stopping therapy until a therapist tells you to stop. While Brooke has had both physical and speech therapy, she now only needs occupational therapy. Camille continues to receive physical, speech and occupational therapy.
Jones knows that there are likely more challenges ahead for Camille, but she finds comfort in knowing that she is doing what is best for her daughter. Beyond Camille’s physical development, there will be an increased emphasis on counting, reading and writing in the years to come.
“I am trying to create the tools for her to have the life she might want to have later on,” she said. “We’re not going to be here forever, so I want to help prepare her for a life without us someday.”
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