Mom Shares: 'We Have To Be The Voice'

By Nancy Wallace-Kletecka, Ulysses News Managing Editor

Ulysses resident Ruby Garza knows the joys and heartaches of being a mom. Garza has six children ages 27, 25, 23, 18 and 7. She lost one child when he was only four months old.

"He was born with pulmonary atresia, hypoplastic right heart syndrome, which is where a valve in his heart was missing," Garza explained. "He had surgery because of it and came through that just fine; but, he RSV caught up to him - that along with his heart issues."

Losing a child is more than any parent should have to face; but, it was not the only challenge she would find before her.

Garza became pregnant with her youngest child, Jocelyn, several years later. She realized when Jocelyn,who is now 7, was different when she was around a year old.

"She wasn’t sleeping very much," Garza said. "Babies normally want to sleep. She just didn’t want to go to sleep. She was staying up 24- 36 hours straight."

Garza said Jocelyn eventually not only wasn't sleeping, other concerns soon became apparent.

"She would get to where when she was awake she would be sitting up and it would look like she was going to sleep," Garza explained. "You know how baby’s will drop their heads like they are about to fall asleep and then jerk back up - she would do that several times and it would be after she had already had a nap. It turned out those were what they call drop seizures."

What is a drop seizure?

According to the epilepsy society, "part or all of the body may become limp. The eyelids may droop, the head may nod or drop forward, and the person may drop things. If standing, the person often falls to the ground. These seizures typically last less than 15 seconds."

Garza made her precious daughter an appointment with a doctor.

"They sent her on to Child’s Mercy in Kansas City," Garza said. "She was having 100 to 250 drop seizures a day."

When told her daughter was having seizures, Garza was not prepared for what type her daughter had.

"I thought seizures were where you fall and have convulsions and all that," Garza said. "I didn’t know they could be with blinking, day dreaming they call it, eye flickering - I didn’t know all of those could be signs of seizures as well until this happened with my daughter."

Jocelyn was also diagnosed with epilepsy.

"They did some more testing and turns out she also had a double chromosome - a rare chromosome disorder," Garza said adding, "one that right now only about 1,300 kids globally around the world have. She’s the first one in Kansas that has ever been diagnosed so it wasn’t just epilepsy. She has autism, intellectual disabilities, development and social disabilities. She’s non-verbal, and has hypoplastic muscle tone. She has trouble walking so she doesn’t walk. She is in a wheelchair. She is 7 years old, but mentally she is about 3-6 months old."

Garza said each day can be a "guessing game".

"It’s kind of a guessing game with feeding her and there are several different things a day she may not understand," she explained.   "There area a lot of things I wish she could understand."

There are challenges, but there is also Jocelyn.

"She is so loving, smart and she does understand her own things," Garza said. "When she wants to go outside she wants to go. She loves being outdoors. She loves water. We can’t go to a doctor’s appointment because if there is a sink in there and she sees it she is going to get to that sink."

More concerning are some other traits that come along with her diagnosis. Traits that Jocelyn has in order to communicate with others.

"She does self harm," Garza said. "She has busted out a couple of her teeth before from biting her wheelchair. Her only way of explaining what she wants is being upset - being aggressive. She will bite and hit and pull hair - whatever. But, not because she is doing it on purpose. She doesn’t know how to express what she is trying to say. You have to be really fast to react because if she is unhappy and she is close to anyone - I try to warn them. When she is happy, that is fine, but when she gets upset you better be ready to move quick. She will reach and grab and pull you in. She is very strong and she is ornery."

Help For Special Needs

According to Garza the journey she and her daughter are on has included frustration in a system that has let them down.

"There is still really no help unfortunately, sadly for children like my Jocelyn," Garza said. "I don’t know if it’s just that way here in Kansas, but adults/seniors get more help a lot faster when it comes to caretakers, etc., than children will."

When they made the trip to Kansas City, Jocelyn did receive some rehabilitation.

"They saw she wasn’t able to walk," Garza said. "I had her in one of those rubber strollers and she had already gotten too big for  it, so they asked if I wanted to put her in a kids wheelchair. I asked them if there was something similar to a stroller wheelchair so they gave me like a stroller. It’s different than a regular stroller. We did get that approved and then got approved for a gait trainer to see if they could help her learn to walk. She has a foot that’s clubbed and she’s going to end up needing surgery."

But as far as any other help, Garza says, "it’s been a struggle."

"It’s still a struggle," she continued. "I'm having trouble getting her a safety bed, which is supposed to help keep her from being able to wander. She may not walk, but she does crawl. She crawls everywhere and gets in to everything. We had a bed made for her. It’s basically a twin size crib, but the thing is it’s wood. It’s not safe for her because when she gets upset ..... You know when you have a bull and it gets upset and starts to hit the gate and everything - that’s exactly like she is. So, I’m having to constantly watch her."

Garza says it is difficult for she herself to even get a bathroom break.

"I have to make sure my mom or somebody is here watching her just in case," Garza said. "I’ve been trying to fight to get her a safety bed since was three. It’s an eight to 10 year wait list. She’s already 7 and 102 pounds, so that’s not too good."

Garza, herself, is fighting health issues.

"(And) that’s where it is an issue," Garza said. "Jocelyn is getting heavier and there is equipment to help with that, but I can’t get help with getting it."

Garza is frustrated with the lack of resources.

"I wish there were more things for children and not just for children but for anyone with a disability," she said. "I try to be a voice, not just for my daughter, but other children as well. Handicap accessibility in parks - I've been trying to get them to try and maybe get equipment for them to be able to go and enjoy with other children. Kids like my Jocelyn are being bullied by the system is how I see it. Kids in wheelchairs are on the sidelines, because they are not allowed to enjoy anything like other children."

Garza has pushed for changes on the school level.

"I pushed it enough at one of the schools that they put handicapped parking in front of the school," she said. "I think they have one swing to put out there, but I believe there are two or three other children in wheelchairs who go there, too. It is just sad."

Jocelyn only goes to school for half days may times, according to Garza, because she wants to sleep so much.

"She goes when she is able to," Garza said.

Garza's family helps when they can.

"My oldest daughters all work and have children of their own," Garza said. "My mother is elderly. My  sister would help, but now she has someone in a wheelchair. I wish people could understand how hard it is. They really don’t know how hard it really is without help. I wish the state would understand too."

Garza says she has a granddaughter who is very protective over Jocelyn when she is at school.

And Garza, who cares for her daughter as a single parent, said it is her wish that the state, in particular, would step up and do more.

"Just because Jocelyn isn’t on oxygen or has tubes or anything - she doesn’t qualify for a lot of things,  even though the doctors have all said she is a 24-7 care child," Garza said. "She needs to be taken care of 24-7 - period."

Garza says she only gets rest when Jocelyn rests.

"When Jocelyn sleeps - I sleep," she said. "That's   when she does actually sleep. Right now my bed is right there next to hers so I can put the TV on for her. She will play with her toys and I can get a power nap. I'm a light sleeper so that’s how I get my power naps in. I have to force my body to go to sleep some times when it’s not used to having Jocelyn's schedule."

Garza says she "tries her best."

"And I will always try my best until the Lord says I can’t no more," she said. "To be honest, I don’t think my body is agreeing with it so much though. I have a torn tendon in my elbow now from lifting her so much. It’s causing a lot of pain."

Garza is needing surgery to repair her torn tendon.

"But, since I don’t have a lot of support, I think 'what’s the point of trying to get surgery?' It’s like a six week recovery. I can’t do six weeks recovery, because I don’t have anybody to watch her. I wouldn’t even be able to do a day or two. I can’t even take care of myself."

Garza says she is home with her daughter all the time.

"My family and my kids get on to me about my health issues and tell me to go to the doctor," Garza said. "I say, 'what is the point? Who is going to watch Jocelyn?'  I have nobody to watch her and I will be darned to ever put her in a care home."

A care home is not something Garza wants for her daughter.

"It is scary," she said,  "thinking about even having someone, because Jocelyn is non-verbal and you can’t trust a lot of people these days. I know my daughter. She is eventually going to be saying some words. Maybe not right now, but she will. Hopefully God willing -  when her surgery is done - she will start to walk a little bit or have a little bit more stability. But, it’s still going to be a long process. I hope God gives me the chance to be here to help her get through all of it because that is my fear - who is going to do it when I’m gone?'

Garza says her other daughters have said they will care for their sister if need be.

"But I don’t think my girls have any idea what they would be in for," she said. "That would be taking over their lives and is something I don’t want to do to them. I want them to have families, a husband and have their kids. With Jocelyn it is all about her - what she needs - what is best for her."

Garza still work with her daughter to continue to grow.

"I'm still trying to get her off a bottle, but it’s been really hard because of her teeth and stuff," Garza said. "She will get her juice and stuff and starts spilling it all over all over her face and bed. She will put it down like she isn’t doing anything and she will start laughing. She already knows she isn’t supposed to be doing that. She will hand me the bottle like, 'here you go. I know I'm not supposed to be doing this, but i did it so here you go.' Jocelyn is smart in her own way."

She understands why someone who hasn't gone through this may not understand.

"I never paid any attention to those with disabilities to know what they go through until I had my daughter," she said. "Now when I go somewhere I wonder why there isn't anything for anybody with disabilities. There is all kinds of stuff for everybody except those with special needs - why? Why can’t they involve the ones with special needs? Fix the environment so they can enjoy it like normal people. They are going through enough already as it is. Why not make their life a little bit easier and make them feel welcomed with everybody else too?"

Jocelyn keeps her going.

"Her laugh. Her smile - that is what makes me go every day," Garza said. "When I hear her laughing - it’s out of nowhere and it just makes my heart warm. It's what I live for. She is so loving. She loves to give hugs and kisses. There’s days that are very difficult, but there are giggles and there are smiles - those take all the pain and everything away."

Garza has advice for others with these challenges.

"One day at a time," she said. "And when you are needing help, seek out help from family. There is nothing wrong with that. It doesn’t make you weak. Ask questions. Look for groups regarding the issues your child has. And above all, have a lot of patience."

It is a difficult journey.

"Parents need to remember - they’ll get there," she said. "It’s hard. Some parents are made to handle it and some just can’t.  And it's important to remember we have to be the voice of our children. Our children need to be involved more with other children as they are growing up. If they were, I think the bullying rate would actually go down, because other children would see they are different, but it’s okay."