Mark and Natalie Weaver  with Sophia in front of one of Natalie's paintings.

Sophia will celebrate her first birthday in October with a ladybug theme, her cake with a single candle, her loving family, squeals of delight, hand clapping, laughter and smiles.
It’ll be a picture of a happy family. And that’s what Sophia’s parents, Natalie and Mark Weaver, want you to see when you spot them out and about in Cornelius.

Sophia was born with a rare craniofacial condition and other conditions that affect her hands and feet. A craniofacial disorder refers to an abnormality of the face or the head, according to the Children’s Craniofacial Association. September is Craniofacial Acceptance Month and the theme is “Beyond the Face is a Heart.”

Sometimes, people stop and stare when they see Sophia, and the Weavers want to protect their happy baby from that cruelty as she goes grocery shopping or on other errands with mom or dad, later goes to daycare and attends school.

“We want to introduce her to the community,” says Natalie. “She’s amazing and beautiful. Say hello and talk to us.”

Mark says, “We’ll settle for a wave and a smile.”

Sophia loves meeting people, her dad says. Besides, keeping her isolated at home isn’t the right thing for the long-term.

The Weavers of Northport Drive are approachable.

“We expected that everyone will look,” says Natalie and that’s OK. A look and a smile are immeasurably better than a stare. “Some come up and say she’s a miracle and amazing.”

Mark says there are nice reactions as well as the horrible. “We’re learning how to react as well,” he says. “We’re not going to go anywhere anonymously.”

The Weavers try to be prepared for all kinds of reactions. “The toughest part of it is that I want people to see her as I see her: Beautiful, amazing, powerful,” says Mark, who works in sales from home.

Natalie is a full-time mom; she stopped working in sales and marketing at the Capital Grille in Charlotte when she was pregnant. She paints, when she has time, and shows her work at Green Rice Designs in NoDa.

In public, the hardest thing is when people stare. “We’re all different,” says Mark. “Otherwise we’d be pretty boring. Sophia did not choose her condition. It’s just her life.”

At the beach: Sophia Weaver, who will turn 1 on Oct. 20, enjoys her summer outing to the coast.

If a child is staring, it’s a good opportunity for a parent to explain that staring is rude and not everyone looks the same.

“Kids accept if it’s explained to them that not everything looks the same, or not everyone goes to the same concert or wears the same clothes,” Mark says. “Just like you have a map on the wall, showing Africa and Asia, and people just look different.”

Some words cut deep. What’s wrong with her? What happened to her?

Natalie explained Sophia’s condition to one woman’s questions. “Oh, that’s sad,” the woman responded.

“And it’s not,” Natalie says. “I feel lucky. I have so much more appreciation of everything. … I don’t ever want anyone to feel sad or sorry for us. I feel happy.”

Natalie and Mark are united in that sentiment, as they seem to be in everything regarding Sophia.

“We want people to accept people for what they are, not how they look. We want to open people’s eyes that not everyone is the same,” they say.

“She is a normal baby, on track, just the outside looks different.”

Why Sophia developed her condition remains a mystery, for now. Her chromosome tests have come back normal; further gene testing may be done. None of her many specialists have seen anything like her condition so it may take a while to figure out. Sophia’s blood is being tested in the Netherlands for a possible combination of two rare syndromes. If that test is positive, she will be the first known case. She truly is one of a kind.

“We never thought we’d have to go through all of this,” says Mark. “Everytime we see a child who is different, we make sure we tell the parents that their child is beautiful and that they’re doing a good job.”

Caring for Sophia

Right from the start in the neo-natal intensive care unit, Natalie and Mark learned how to care for Sophia, and took over all the duties. Sophia needed lubricant in her eyes, for example, because she didn’t have lower eyelids until skin was grafted from behind her ears to the red exposed tissue under her eyes. That was Sophia’s second surgery. The first was to put in a temporary feeding tube at 9 days old.

Sophia has a physical therapist, occupational therapist, speech therapist and nurse that visit every week. Natalie and Mark have learned all of her therapies and do them with her each day.

The third of what will be many surgeries was completed in early September.

Sophia’s small, underdeveloped feet couldn’t support her. And she, like other children her age, was ready to start pushing up on them in anticipation of standing on her own and her first steps.

Going into the operating room, the surgeon didn’t know if he could create enough of a platform on Sophia’s feet to support her weight. If not, amputation of both feet and prosthetic devices would be the only hope that would allow Sophia to eventually run around, chasing her pet dogs and playing “catch me if you can” with mom.

Sophia is at home now, with huge pink casts all the way up her thighs. “The surgery went great and Sophia still has both of her feet,” Natalie and Mark report. “The doctor was able to straighten them. … We hope that Sophia’s feet will grow enough so that she can support herself and walk. We are so grateful that she has the opportunity to try.”

Want to know more?

About Sophia Weaver: Visit: http://caringbridge.org/visit/sophiaweaver

About craniofacial condition: The Children’s Craniofacial Association envisions a world where all people are accepted for who they are, not how they look. Each year approximately 100,00 children are born in the United States with some form of facial disfigurement. In many cases, reconstructive surgeons can correct these problems early. In other cases, however, reconstruction is not so easy or even possible. CCA supports these children and their families.
Details: ccakids.org

ONLINE EXTRA

First signs

 When Natalie Weaver was about 32 weeks into her pregnancy with her first child, she pushed for an ultrasound because she felt that something was wrong. “I wanted to check to make sure everything was OK,” she says. During the procedure, the technician left the room; “that’s never a good sign.”

The doctor told the Weavers there was something in front of their child’s face and he couldn’t tell what it was. Natalie was sent to a specialist, a two-hour ultrasound was performed and another doctor was brought in.

He told them that he couldn’t see Sophia’s jaw because it was so recessed. Her tongue was always out. Her hands were always open. In the earlier quick ultrasounds, the Weavers thought Sophia was sticking her tongue out at everyone and waving hello.

The doctor said it could be Pierre Robin syndrome, a condition present at birth in which an infant has a very small lower jaw, a tongue that tends to fall back and downward, and a soft cleft palate.

“Any chance you’re wrong?” Natalie asked.

The doctor looked down and shook his head.

“We never expected it. Sophia is our first,” Natalie says. “We went about our day. We were in shock, waking up every morning upset and feeling a heavy weight.”

That sinking feeling was alleviated when the Weavers had to switch to another doctor, who gave them hope. “We needed to hear there was hope,” says Natalie. “It was so hard to get through.”

The delivery

Natalie was admitted to the hospital on Oct. 19, 2008, the day before Sophia was to be delivered. “Labor was the easiest part,” says Natalie, about 10 minutes of the five hours in “hard” labor.

“I remember saying is she ok? Is she ok? No one would answer,” says Natalie.

The main concern was whether Sophia’s respiratory system would be developed enough that she could breathe on her own.

Sophia started crying. That’s a good sign. “But is she OK?” Natalie wanted to know.

Natalie briefly held Sophia before she was taken to the neo-natal intensive care unit. “I was in shock. Her face was all swollen. Even though babies can’t see, we were looking straight in each other’s eyes,” Natalie remembers.

Natalie was scared and she says she pushed off visiting Sophia, who was born in the early afternoon at 5 pounds 15 ounces, because of that fear.

“Finally in the evening, we went to see her,” says Natalie.  “A nurse was holding her, baby talking to her and being so sweet.”

And then Natalie held her baby. “We didn’t know if mentally she was OK. If internally she was developed.”

The nurse comforted the new mother. “From that moment on, I let everything go,” says Natalie. “I started to bond with her, care for her, she was my baby.”

Natalie and Mark learned how to care for Sophia, and took over all the duties. Sophia needed lubricant in her eyes, for example, because she didn’t have lower eyelids until a later surgery grafted skin from behind her ears to the red exposed tissue under her eyes. That was Sophia’s second surgery. The first was to put in a feeding tube at 9 days old.

What’s next

 Natalie says she lives in the moment with Sophia. “Not thinking about three weeks from now. Or surgery next week. I live in the moment and enjoy it.

“You couldn’t think about the 20 surgeries she’s going to have. Another goal of mine is that she feels love and happiness between her surgeries and pain.”

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“We want more kids. We don’t want her to be an only child. There’s a good chance that this was a one-time genetic thing,” Natalie says. “There’s a low percentage of it happening again. I wouldn’t want to have another child go through everything she’s gone through.”

They hope to have a couple more children, brothers or sisters that Sophia will be just the big sister to, with all the interaction, fights and love that binds siblings. And the younger sibs would be a long-term support network for Sophia. “After we’re gone, it would be nice to know she has that,” Natalie says.

 Mark says having a child with special needs has an impact on planning for a family. They don’t want the gap between siblings to be too many years, but know that Sophia’s needs are the priority right now.

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One of the doctors says Sophia is writing her own book, and no one knows how many pages or chapters it will have, but we’re all a part of it.

“That’s a nice way of putting it,” says Mark. “It’s going to be an amazing journey.”