Every child’s birth should be a brazen act of faith and a declaration of hope. Most acts — the brazen ones most especially — are ultimately tested. Meeting those tests requires love if we are to not only overcome, but to grow in grace.
Ryan and Micha Anderson had no shortage of love and grace from the very start of their life to-gether. If not for that love, they might have responded very differently upon learning that their as yet unborn child showed clear indications of a severe genetic disorder. While their physicians’ advice was to terminate the pregnancy, Ryan and Micha opted for a brazen act of faith by bring-ing their daughter Ellie into the world.
The Andersons met in Tucson at the company where they were both employed. “We were in our early twenties with no kids and working our butts off in the hospitality industry,” Ryan recalls. They were also in love. Following their marriage, they decided that a new life challenge was in order and moved to San Francisco, where Ryan had accepted a job. Their most profound chal-lenge began, however, when not long after moving they discovered that Micha was pregnant.
Ryan and Micha were elated when they saw the first ultrasound images of their daughter. Their doctors were not. Ellie was diagnosed in utero with a genetic disorder serious enough to warrant the termination of the pregnancy — but Ellie’s parents weren’t inclined to give up on her. “We’re not particularly religious,” says Ryan, “but our thought was that there’s something bigger going on here. We hung tight and let that little gift grow.”
It was only at her birth that Ryan and Micha realized how woefully unprepared their medical team was to respond to the needs of their newborn, as well as her mother. “Micha was in a really bad place following an emergency c-section,” Ryan recalls, “and I was faced with the decision of staying with my wife or rushing with my daughter to the NICU. I went with Ellie, and that was where we stayed for the next 20 days or so.”
Ellie’s legs were badly misshapen, with her right foot resting on her left shoulder. “We’ve been working every day since we brought her home to help that little flower unfurl,” says Ryan. With years of therapy, effort, and love, Ellie was able to transition to a wheelchair, and she has been able to gain not only physical mobility but some verbal ability as well.
The need for a broader support network took Ryan, Micha, and their daughter back to Phoenix, where they could be closer to family in Tucson. Their choice of cities proved a godsend as well from the standpoint of daycare resources. They worried about the environment in which Ellie would spend her time outside of home — particularly after a mishap at their previous daycare resulted in Ellie suffering a broken femur (the cause of which Ryan remains unsure of to this day). Needless to say, they were “choosy.”
The first thing that attracted Ryan and Micha to Upward was its concept of integrated class-rooms. Says Ryan, “As the parent of a child with special needs, the last thing you want is for your child to feel different. I would rather she adjust to life as a normal kid who happens to have special needs.” The Andersons also liked Upward’s student/teacher ratio, its nutritional standards, and the overall care they witnessed from the staff. Thanks in part to a state-funded “Empower-ment Scholarship,” Ellie enrolled at Upward, and she currently attends a pre-school program that includes physical therapy, as well as receiving occupational therapy through an outpatient pro-gram.
When Upward’s Director of Education, Angelia Fugatt, first met Ellie, she was “in awe.” “I’d never seen a child with such a strong will and a delightful way — she is amazing.” In spite of Ellie’s physical limitations, Angelia describes her as cognitively “high functioning.” She is learning her ABCs and can identify colors, shapes, and numbers. She is also a very hard worker, Angelia notes. “Once, when I was unable to work with Ellie, I told her that it had been a very busy day. She responded with a disappointed ‘awww’. Another time I playfully told her that she was tired and she should maybe take a nap. She signed, ‘No…help me work!’”. And should Ellie perceive anything missing from a lesson, she is quick to call her teacher’s attention to that lapse. “She is able to conquer tasks right away and always wants to learn more. She’s a go-getter,” Angelia observes.
Ellie can now push herself in her wheelchair, and her added independence and mobility have made her that much more outgoing. “She wheels around and high fives everyone,” notes An-gelia. “One time she noticed a new person, and she wheeled over, introduced herself and shook hands.” She also has a best friend named River. “River is a very normal kid whose best friend just happens to be in a wheelchair,” says Ryan. “How awesome for him!”
With Ellie turning five, the Andersons find themselves at a bittersweet juncture in their child’s life. Next year, Ellie will attend kindergarten at her local public school. “It’s a heartbreaking time,” says Ryan. “She is excited to do this, and I’m really nervous — but it wouldn’t be possible were it not for Upward and what they did for Ellie. It has been such a great incubator.”
Just as it had happened with their first move as a married couple, Ryan and Micha once again found themselves expecting a child as they settled into their new home in Phoenix. Their son, Bodie, is now nearly two, and very pleased to have a big sister like Ellie. The benefit goes both ways, Ryan points out. “Bodie is driving Ellie to grow, and now I have a son who has nothing oth-er than acceptance of people with disabilities. They are very close.”
Whatever normal parental anxieties the Anderson's may have regarding Ellie’s kindergarten ca-reer, especially when compared to her experience at Upward, Ryan and Micha have nothing but hope for their daughter’s future. “The thing that has always been fantastic about Ellie is that she is just a really old soul — to be so challenged and to have such a wonderful attitude,” says Ryan. “She is always excited, always smiling. Yesterday was pirate day (at Upward). Captain Jack Sparrow arrived and the kids were excited but a little scared when a sword fight began…so tell me how my daughter, who can’t walk and whose speech is extremely hard to understand, grabbed a sword and fought a pirate! But that’s who Ellie is. She conquers almost everything that she tries, even though she gets frustrated because she can’t communicate the way she wants to. We’ve learned some good coping mechanisms around that, and she is really adaptive.”
Asked where he thinks Ellie gets her confidence, Ryan is quick to answer. “I’d like to think Ellie gets it from both her parents, but I really think it’s mostly due to her mother, who is a breathtaking woman. You won’t meet a harder fighter than my wife, and I think a lot of that comes from the notion that none of us will settle for ‘can’t’. There is a lot of curiosity going on in our house.”
The Andersons know that Ellie’s curiosity about the world is mirrored by the world’s curiosity about her, and about what makes her different. This hasn’t always been easy to cope with, and Ryan recalls that, “We had a period during which we had to do serial casting — constantly bend-ing her legs in the right direction, which was very painful for her; and the sight of an infant who weighs twelve pounds and is wearing a four pound cast gets people’s attention. We were out in public, and someone asked me what was wrong with her. I replied in a not very nice way at the time, but I realize now that people ask out of curiosity. When you’re not around people with spe-cial needs, it can be hard. You don’t know what to do or say…there are so many questions.”
The Andersons would like to devote themselves more fully to those questions…and to sharing Ellie’s story with a world that can always benefit from more inspiration. “I want people to know that there is nothing wrong with Ellie…that it is okay to ask someone about why their child is in a wheelchair,” says Ryan. “I’d like people to understand that they should ask about her. I want the world to see that it is okay to have special needs. I want my daughter to change the world…and I want everyone to see that happen.”
Toward that end, Ryan and Micha contemplate yet another brazen act. “We would like to get our teaching certificates and take our kids on the road with us to meet the 10 to 12 other families that we know of who have someone with Ellie’s condition.” On that journey, the Andersons also want to share their declaration of hope. “I don’t want anyone to think this is a burden…it’s the greatest thing that has ever happened to me,” says Ryan. “I want to do anything I can to tell people that love is the most important thing you can give your kids. They don’t need to walk…you just have to love them.”
In the meantime, the Anderson’s brazen act of five years ago continues to resonate, and Ryan readily acknowledges the blessings of the decision he and Micha made regarding their daugh-ter’s birth, despite its odds for heartache. Which is not to say that there aren’t tears. “Ellie makes me cry once a day,” Ryan admits, “and I feel like a chamber grows in my heart. As a parent, I feel it’s my job to teach her how to be a great human. Ironically, she is the one teaching me…and that is a gift I would never trade for the entire world.”