“She came three weeks early, so we weren’t really prepared. By the time we showed up at the hospital, I was too far along to get an epidural or anything.

“When the head delivered, the doctor saw that the cord was wrapped around her neck. He cut it, not knowing that she was trapped behind my pelvis bone with her left arm. She was not moving. He couldn’t do a C-section because he might cut into her. So he had to break her left clavicle to maneuver her shoulder down and around the bone to deliver her.

“She was without oxygen for a good 2-3 minutes. The result is that she has developmental delays, speech delays. She’s kind of shaky on her feet sometimes. She has a mild case of cerebral palsy and epilepsy. The damage to her brain is right in the area where speech happens.

“She’s better now. She can convey to us that she’s hungry and thirsty, and what she wants to eat. She lets us know if she hurts, if she’s sleepy, things like that. That’s awesome. But Abby is always going to require care. She’s always going to be disabled.

“I get mad about twice a year, because for Social Security disability we have to justify them giving her money every month. We have to fill out these booklets that list her disabilities and get statements from her teacher. And I’m thinking, ‘Why do you people keep reminding me about all the stuff that my kid can’t do? It’s not fair. I wish you would stop.’

“I work in insurance, so I understand. You have to avoid fraud. People will try to put one over if they think they can profit from it. So I get it. It’s just hard to go through all of that and have to deal with those emotions every time.”

— Jill Huckaby

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“One of my biggest challenges is time,” she said. “With multiple children at different ages, it’s hard to find the time for one-on-one with each. It’s also difficult to do activities that everyone is interested in or that all can participate in.”

When Amanda was 23 years old, the story was a bit different. Besides her young son, Logan, the focus of her attention was a new baby facing an uphill battle.

Bethany was born full term. She weighed 10 pounds, 2 ounces, and was the largest baby in the neonatal intensive care unit.

“Doctors noticed right away that she did not have the ability to suck a bottle or swallow,” Amanda said. “Before we could take her home, she ended up having surgery for a feeding tube.”

Born with cerebral palsy, Bethany was given little hope of leading a normal life.

Based on what the doctors told her, Amanda believed her daughter “would most likely be a vegetable, for lack of a better word.”

To add to a young mom’s challenges, Amanda and Bethany’s father separated. Eventually, Amanda felt it necessary to legally end his relationship with Bethany.

“So here I was, 24 years old, with two kids under the age of 5, one with severe disabilities,” Amanda said.

Fortunately, when Bethany began receiving therapy services at 3 months old, she showed progress right away.

It was a long and slow process. But with the therapist’s guidance, follow through at home and Bethany’s determination, she eventually was able to eat enough food by mouth to have the feeding tube permanently removed. She was able to sit by herself by 3 years old.

“Once she started going to the clinic for therapy, she really started taking off,” Amanda said. “She learned basic sign language to communicate until her speed improved, and she learned to independently dress and groom herself.”

Bethany, now 14, has been released from therapy services for five years. And she continues to flourish.

Anything physically demanding causes Bethany to tire a lot faster than a typical child. She uses forearm crutches to assist in walking every day. She occasionally uses a wheelchair, mostly on vacations or trips to the zoo when lots of walking is required.

A teacher recommended placing Bethany in Special Olympics through the school district to help her get exercise, and also to meet new people and make friends.

“She loves it. She participates in bocce, baseball and bowling in the fall, as well as basketball, soccer and cycling in the spring,” Amanda said.

Bethany also competes in Unified Showmanship, where she shows a goat or lamb. In addition, she is in student council at school.

“Like many other special needs parents, I tended to overcompensate in the beginning. I just wasn’t sure how to navigate this unfamiliar path our lives had taken,” Amanda said.

“But as the years went by and I saw the interaction between Bethany and her siblings, I noticed that she just wanted to be treated the same as them. She sees herself as the same as them, and we do, too.”

Amanda and her husband of nine years, Andres, have two sons and two daughters: Andres (24), Logan (18), Bethany and Mia (4).

When they saw that Bethany was old enough and capable of completing chores, she started doing her fair share.

“All the expectations of the kids are the same, and she lives up to them every day,” Amanda said.

“She is smart, kind, funny and beautiful inside and out. I couldn’t be prouder to be her mother. I’m amazed by the things she accomplishes and the way she continually inspires everyone around her. She inspires me. She is my hero.”

Through the years, Amanda feels she has matured as a parent. Despite challenges along the way, she has embraced the experience.

“The best part of being a parent is learning and growing with your children, and watching their little personalities blossom. You get to share every accomplishment, every milestone, every bump along the way. You get to be a part of someone’s story from the very beginning. You get to see the very best parts of yourself in them,” Amanda said.

“For me, a high point of parenting is when I see the qualities of good character, compassion and acceptance come from my children’s actions. It makes me proud to know that some of what I’ve been trying to instill in them is sticking.”

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