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Mothers who endure

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Mothers are many things to many people, but to some of our special children, they are lessons in perseverance who provide every little aspect of life. Here are three examples of those mothers who endure.

By Lisa King

“A mother’s arms are made of tenderness and children sleep soundly in them.”

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Those moving words by novelist Victor Hugo are especially true in the case of mothers who lovingly continue to care for children who have endured much illness or trauma in their lives.

We pay homage to all moms on Mother’s Day this year – with a special tribute to three wonderful women who give a special meaning to the word “mother.”

 

Elizabeth Nichols

 

‘I believe that God thought I was strong enough to care for Reese. and he chose me because I am the best mother for her.’

 

Reese McClain Nichols is only 21 months old, and already has undergone 33 emergency room visits and enough illness to last a lifetime, said her mother, Elizabeth Nichols.

Reese also has a chromosomal disorder, “Xq28,” a condition so rare that there have only been five documented female cases in the United States, Nichols said.

“What it means for Reese is that she will experience severe mental and physical disabilities,” she said. “Kyle [her husband] and I, we don’t know if she will ever walk or talk.”

Reese has some type of therapy, either, speech, physical or aqua therapy five days a week.

“The neurologist has told us to expose her to as many types of environments as possible, so that’s what we do,” she said. “We take her everywhere, to the beach to the zoo, to birthday parties, to Disney World, to help her meet her full potential, whatever that may be.

“Emotionally, it can be difficult when you see children her age walking and talking, and a lot of those children are starting to be potty trained, and that probably will never be in our future. So that’s a little hard on me. But I truly believe that Reese is made in God’s image and that she’s fearfully and wonderfully made. That really helps me get through each day. I have that scripture [Psalm 139:14] on my computer at work, and I read it every day. I have inserted her name into the scripture.’

Nichols said caring for her daughter is becoming more difficult as she grows.

“Physically, it’s hard; because she weighs 26 pounds, and when I give her a bath, she has to have support sitting up, and getting her in and out of the tub is a struggle, and so is even just doing simple errands,” she said. “When we travel, we have to take her suction machines and medication; we have to make sure we know where the closest children’s hospital is when we go anywhere. All her files are on a jump drive,” she said. “Reese has been through open-heart surgery; she’s had her adenoids and tonsils taken out. She’s been hospitalized seven times.”

How does she cope?

“I just take it one day at a time,” Nichols said. “No one is guaranteed a tomorrow, so we make the most of each day and thank God for all our blessings. I believe that God thought I was strong enough to care for Reese, and he chose me because I am the best mother for her. It takes a lot of energy and a lot of determination, and you just cannot give up because they are dependent on you.”

 

 

Norma Zapien

‘She is my baby.’

 

Her daughter still watches her mother with her eyes and follows her movements as she has since she awoke from a 3-month long coma.

But will Dennise Escareno ever regain full awareness and speak to her mother in that loving voice that Norma Zapien has been longing to hear?

Doctors say not, but Zapien said she never will give up hope.

 “It makes me sad to see her the way she is, but I am happy to still have her with me,” Zapien said.

Zapien has been caring for Escareno, 25, ever since February 2012, when she took her home to Arizona from the University of Louisville Hospital, where her daughter had been since being brutally beaten and left for dead by the side of Mount Eden Road in November 2011.

Denisse’s most severe wound was a head injury that left a large discolored indentation an inch wide and an inch deep on the right side of her forehead – an injury that robbed her of her life as she knew it.

Now she must be cared for as a baby, fed through a tube, her diaper changed, everything done for her. She still has not spoken, and though she follows movement with her vacant eyes, no one knows how much of Dennise still exists in her horribly damaged brain.

But however much is still there, her mother said she will treasure her forever – and that’s how long she will continue to care for her daughter.

“Caring for her always, it’s hard, but I don’t mind,” Zapien said. “She is my baby.”

Even though her daughter doesn’t respond, Zapien tries to treat her as though she can hear her, because no one knows how much she comprehends.

Besides, Zapien says, that is the only interaction she can ever have with her daughter.

“I like to sit beside her bed and brush her hair and talk to her, like I did when she was a little girl,” she said, weeping softly.

 

Margaret Hall

‘He’s got such a sweet little laugh.’

 

“It’s just something I’ve known for the last 15 years, and I don’t mind that,” said Margaret Hall of caring for her son, Glenn, for the rest of her life.

Hall is an endless source of love and devotion to Glenn, who was born with a rare chromosomal disease and is confined to a wheelchair.

Glenn doesn’t speak, is fed mostly through a tube and requires diapering, because of his condition, partial trisomy 6Q, an extremely rare chromosomal disorder that causes slow physical development, mental retardation, malformations of the skull and facial region and other physical abnormalities.

Hall said she is encouraged because her son, who also has a hearing impairment has learned to indicate that he wants a drink by using sign language he learned at his special education class at Shelby County High School; she only wishes she could communicate with him to a greater extent.

“Him not being able to talk is tough, because you don’t know what’s wrong with him,” she said. “If he’s crying and fussing and running a fever, you can tell he doesn’t feel good, that he’s sick.”

Just as Glenn was recovering from surgery on both knees last year, Hall received a handicapped accessible van as a gift from the entire community, purchased with $30,000 raised from numerous fundraisers, something that has helped her tremendously, she said, because getting her son into and out of his wheelchair into a car was becoming increasing difficult.

Though that problem has been solved, she said she continues to struggle with her son’s mobility issues.

The most difficult thing to deal with for her, Hall said, is that as her son grows older, he is getting heavier, and she is having an increasingly hard time caring for him.

“Picking him up and lifting him and moving him and bathing him is really tough,” she said. “And he’s only going to get bigger. I pretty much have to take everything one day at a time. That’s all I can do.”

Hall said she treasures every little thing that her son can do by himself – which a very limited number.

“He knows to wheel his wheelchair into his room where his little toy box is, and he knows when he wheels into the kitchen that he is probably going to get something to drink out of his cup,” she said.  “He likes to go for a walk around the subdivision [in his wheelchair], and he likes to watch cartoons.”

There are special moments, too, just simple things that Hall cherishes.

“He’s got such a sweet little laugh when he giggles, especially when he does things he’s not to supposed to do, like knock stuff off tables, and things like that, or throw stuff he’s not supposed to throw,” she said.  “The little faces he makes sometimes are so funny.”

Hall said that sometimes it’s hard not to wish for something more for her son.

“I look at kids his age sometimes, and their parents talk about how bad or wild they are, and I think, you don’t know how well you have it,” she said. “Their kids can walk, they can talk, [and] they can lead a normal life.”

But she will persevere, she said, until old age or death intervenes. Nothing else is an option.

“He will stay with me until I just can’t do it anymore,” she said.