Photo by Valerie Shelton – The Van Ornam family: Lori, Juliana, Sydnee and Mark.
By Valerie Shelton, Editor
When twins Sydnee and Juliana Van Ornam, 14, were born, it was a miracle for parents Lori and Mark.
For years, the couple had tried unsuccessfully to conceive and than were blessed to conceive quadruplets after undergoing fertility treatments. After losing two of the four, Lori said they were fearful of losing Sydnee and Juliana too. When the girls were finally born, it was a joyous occasion even though Lori and Mark soon realized that Juliana would be disabled.
“When I was pregnant with four they said I should consider reduction, but that is a tough decision,” Lori said. “They recommended that because when you have multiples there is a higher risk of disability, but we weren’t going to go for that and we let the Lord decide what we were going to have. It just happened that Juliana has a genetic disorder.”
Juliana’s disorder is Aicardi Syndrome, a rare genetic malformation syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, and seizures in the form on infantile spasms. Due to the syndrome, Juliana is confined to a wheelchair and she can neither talk nor eat solid food. She is also blind.
For a short time, Lori said, they believed Sydnee would also be blind, but it turned out that she was misdiagnosed.
As a result, Lori and Mark have had the unique experience of raising twins side-by-side who have very different abilities and needs.
“I would say it’s a blessing because we wanted children and having a disabled child makes you really consider whether you are going to have another baby so we were blessed to have both of them so we get the joy of seeing what Sydnee does as a regular child and growing up in the scholastic system and doing sports and everything and then we get the love of having more or less a toddler all the time who we can love on and snuggle with so I think it is a blessing in disguise,” Lori said.
Mark Van Ornam, who works as a fire captain with Clovis Fire, said he also thinks of it as a blessing and though it’s not always easy, he said they just take everything one day at a time as a family.
“I get up in the morning and get it done, go to bed and wake up the next morning and do the same thing,” Mark said. “You get up and you just do it because that is what is on your plate…It’s tough to be gone so often knowing what goes on at home, but Lori is the rock and she is able to take care of everything.”
Juliana and Sydnee have also been a blessing to one another.
Sydnee, an eighth grader at Alta Sierra Intermediate, said she can’t imagine what life would be like without her fraternal twin.
“I don’t know what it is like to have a sibling without a disability,” Sydnee said. “She is my twin sister and we’ve never been apart and I’m okay with that. I can’t compare it to having a sibling who doesn’t have a disability because I don’t know what that is like. I can relate to people who have a sister but I can’t relate to people who have a non-disabled sister. I’m fine with that because it would be silly for me not to be.”
A true sisterly bond, Sydnee says she is able to decipher what her sister needs when she makes certain noises or gestures. This is how she knows Juliana loves hearing people talk with her and certain songs. She said her sister also enjoys some lights and really loves to roll around and play on her “happy mat.” Of course, Sydnee can also tell when Juliana is in distress and takes on the traditional big sister role of protecting her, even though Juliana was technically born first.
Part of this “protection” is informing her friends and others in the community about Juliana and her syndrome. Sydnee’s mission is to spread awareness and teach people how they should behave around a disabled person and their family.
On March 14, Sydnee shared some of these tips with children in the Building Bridges club at Cole Elementary School.
Some of her advice included don’t stare at a disabled person, don’t park in a handicapped stall without a handicapped sticker or license plate, and be sure to ask before you push someone’s wheelchair.
“When you see someone in a wheelchair you don’t want to walk right in front of them because they will have to stop and try to move around you,” Sydnee explained to kids at Cole. “You don’t want to block them so as much as you can, try not to block them. You don’t want to block them or get in front of them or stop their wheelchair and you don not want to get your feet run over. It’s not ok to push the wheelchair for them without asking. You need to ask ‘hey, can I help you?’ Or ‘Is it ok if I push your wheelchair?’ You may not want to ask that first thing, you may want to introduce yourself and have a conversation with them before you ask.”
Inspired by interacting with and helping her sister, Sydnee plans to one day become a family nurse practitioner. Before having the girls, Lori worked as an X-ray nurse and an emergency room nurse, so Sydnee would also be following in her footsteps.
Lori said she is proud of how Sydnee advocates on Juliana’s behalf.
“Sydnee is an extreme advocate of disability awareness. She pulls people aside who don’t know anything about disability and invites them over to meet her sister and she always has,” Lori said. “She wants them to feel comfortable and she wants her sister to be included. She incorporates her in her teenage activities with her friends and she is not afraid to bring her to school. I thought people would tease her in life as she got older, but people really don’t do that. They really are more accepting now especially with the elementary schools pulling kids over to the special school to read with them. I’ll be walking in the grocery store with Juliana and somebody will come up to me and say ‘I know Juliana, I used to read to her in class’ so it is great because Juliana gets to know more people and hear more people.”
Lori said she is glad that disability awareness is spreading and that Sydnee is a part of that because when she first had Juliana and Sydnee it was tough to just go to the store.
“When I was a young mom, I just wished that people would look at me and look at my daughter because I’m not invisible, I’m here, but people always looked away,” Lori said. “With a disabled child, you want somebody to say, even if the child is terribly disfigured or something, at least say something nice about their hair or bows or the pretty sweatshirt she is wearing that day. You can always find something kind to say to someone and that is what people want to do, they just want to be recognized that they are there.”