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United Way Hope Story
How a young mother learned to care for her child with disabilities: Amber Sroufe
By Jody Grismore Vance
Children First – a United Way agency–began in 1971, founded by volunteers—mothers of children with problems. They were seeking to find ways to help them. Now there are many programs, most geared toward maximizing the opportunities in a child’s early life.
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This is the story of one of those children who is receiving home-based help through the Early Intervention and the Family Advocacy programs.
Jamison is 11 months old now; his mother, Amber Sroufe, is 23. On Friday, March 28, they were sharing the sofa at their house in Wawaka. Jamison’s sister, Skye—two, going on three—was making up all sorts of clever games.
In one of the chairs sat Jenny Deal, a nurse.
A nurse? Yes, a nurse, a home-health nurse. She is one of three who come for eight hours each weekday except Tuesday. She is there because Jamison has Mitochondrial Disease and that is not a good thing to have.
He has had it forever, since even before he was born last June 11—it is a hereditary disease. The doctors didn’t know what he had when he was born, but they knew something was wrong. He had to be resuscitated and was airlifted to Parkview’s neo-natal ICU.
Amber has a memory from just before Jamison was born. She and her mother were watching a show on TV about a mother with three children, one of whom was disabled. Amber said to her mom, “Man, I could never have a disabled child. I don’t know what I would do. I don’t know how I would handle it.”
After the birth, Amber had to remain at the hospital at Columbia City.
She says, “At that point I didn’t know. No one told me anything other than that he wasn’t breathing.” It was her mother who went to see the baby at the Fort Wayne NICU and came back to tell her daughter what the situation was. Amber says, “She didn’t lie to me; she told me that something was seriously the matter.“
Amber had said she didn’t think she could handle a disabled child. But she adds, her voice soft, “And three days later, I had a disabled child. I was scared. Things like this happen all the time; there are all types of disabled children out there, but nobody actually thinks, ‘This is going to happen to me.’ You just don’t.”
Jamison was in the Parkview NICU until July 21. He went home with a trach (an airway in his throat) to allow him to breathe since his vocal chords were paralyzed in a closed position and would not let air through.
It was an unknown path and Amber says, “At first I didn’t know where to call, who do get hold of, or where to any of this stuff. I didn’t know, so the lady from First Steps helped me out with that – the Noble County Foundation, Turnstone….”
Jamison now has three therapists who each come once a week to address occupational, physical and development issues.
And Melinda Bowley comes too. “She’s kind of like my advocate person; she comes out to my house, sits with me, helps me make phone calls. She’s the one that got my home health care rolling; everything is a long process when you’re working with Medicaid and she helped push things a little bit.”
Speaking of the past months, Amber says when the First Steps people first came, they asked, “What is your goal for him?” She answered for Jamison to sit up by himself by his first birthday. Now she says wistfully, “I don’t think it’s going to happen.”
However, he is moving forward and she says, “With the therapies he has progressed so much; he went from doing nothing and now he can sit in his special seat for 15 minutes. Just this week, he started rolling over and holding his head up and having more eye contact.”
Her life has changed drastically. She says, “I have never, ever been without a job since the age of 14…and it’s hard sitting here all the time.”
Well, she’s going to be taking on more. She says, “I start college in May to be a nurse and I want to work in the NICU. I’ve always wanted to be a nurse, and I’ve always worked in nursing homes as a CNA. But I’ve always said to myself that I could never work in a NICU—that would be just the saddest thing ever.
“But to have a nurse that was his nurse be able to relate to me, to have a disabled child of her own…and to just sit and cry with me, because I didn’t know what to think, to do or anything.
“I just knew I had a disabled child that was going to be coming home with me. I was scared. I think that going into nursing school, that’s what I need to do. I need to be able to help other mothers, other families.”
Finally, in January or this year, the doctors determined that Jamison has Mitochondrial Disease, but the specific type will not be known until results from a biopsy taken in February come back. Because of his disease, his body cannot effectively process oxygen and food into the energy needed for cells to function and grow. There is at this time no cure.
But Amber, as Barb Mazur of Children First says, is “a real advocate for her child.”
Amber has learned about a little girl, now eight who walks to school with her siblings. Not unusual…usually. But this little girl was a few months past a year old and only eight pounds when doctors gave her six months to live. She, like Jamison, has Mitochondrial Disease.
Amber says, “She was going to die and the parents were thinking, ‘What can we try?’” They turned to a hyperbaric chamber that increases the amount of oxygen taken in by the body.
Jamison’s family is now trying to raise the money for one. Medicaid won’t pay for it and those used in hospitals around here are geared for larger people and use a higher pressure of oxygen. Even if he were to have access to a regular hyperbaric chamber, he could only be in it 30 times. The chamber the family wants to get for Jamison can be set for pressures in line with his size and Amber says that the little girl treated previously has been in one over 800 times.
When asked if there was anything special she wanted to say, Amber responded, “There’s a lot of things I’d like to say for people to hear, but one of my main things that I’ve learned is that doctors are only humans. They do not know everything. Nobody knows your child like you do, and you have to stand up for your child, because they cannot stand up for themselves. I have learned to listen to the doctors, but to make them listen to me as well.”
And remember what she said about not being able to about handle having a disabled child? She also says, this: “So I don’t know. Maybe God was saying, ‘Oh, you don’t think you can handle a disabled child? Yes, you can; I’ll prove you wrong. You can handle one.’…But I have good days and I have bad days. I have days where I can talk about him with no problem and I have days when I can’t say mitochondrial disease without bawling.”
Her mother is moving back from northern California to help, Just as Jamison needs his mom, Amber says, “I need my mom to help.”
And through Children First and its program, she has people working with her, helping her find the help Jamison needs and people who understand sometimes you just have to bawl and that’s okay.
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