If you ask Andrea Spencer what Mother's Day means to her, she'll say, "Another year with Mallory."
And that's enough -- because life with Mallory has been full of surprises, both good and bad.
First, there was her early arrival. Born Dec. 2, 1986, at just 32 weeks, Mallory's lungs were underdeveloped and seizures, which likely began at or shortly before birth, caused substantial brain damage.
But, as Andrea and her husband, Gerald, would soon learn, their little girl was a fighter. Seven weeks later and against the odds, the Spencers brought her home.
"When we first brought Mallory home we thought we were prepared," Andrea said. "But we were not prepared."
Dr. Agnes Gomes has been with Grand Island Clinic for 32 years and said she doesn't know if any parent bringing home a special needs child can be completely prepared.
"Her expectations, which are like every mother's, are shattered because she has a child with special needs," Gomes said. "She has a child who, unlike the majority of newborns, has difficulty breathing, swallowing and eating.
"We would hope to prepare a parent, but when you get home, you know, you're on your own," Gomes said. "And things may come up that were not there before. A child who may not have had seizures before may have seizures when they get home. Or a child who is eating very well is suddenly unable to handle the nutrition and may have choking episodes. It's never easy."
While the child is still in the hospital, medical personnel encourage parents to stay around as much as they can to learn their baby's routine. But, according to Gomes, this too is a scary situation because in the hospital there are nurses assigned to that child night and day. And once home, the parents have to go to work and find suitable care for their child and often stay up with their child at night.
Still, despite the challenges, the Spencers chose to care for their daughter at home -- appreciative of kind professionals who made house calls, the school district's home-bound services, a van with a lift, the support of family and friends, and strong backs.
Caring for Mallory has been a full-time job, 24/7, 365 days a year for 21 years. At times her health has been so fragile that two people were required to care for her properly. And, always, the Spencers have understood that time with Mallory is very valuable because when she gets sick, it's life-threatening. And that has happened more than once.
For the first several years Mallory was fed from a bottle until the Spencers discovered, much to their horror, that their daughter was aspirating almost everything that went into her mouth. So, in March of 1990 Mallory underwent fundoplycation surgery (to tighten the muscle at the top of her stomach) and received a permanent feeding tube.
At the age of 10 Mallory came down with pneumonia and was transported by helicopter to Children's Hospital in Omaha. There she relied upon a ventilator for every breath. The prognosis was grim and doctors warned the Spencers that after seven days on the ventilator Mallory would never be without it. But the little girl who was full of surprises was independent of it after an unbelievable 10 days.
And so the Spencers learned to speak up when it came to Mallory's care -- especially in grave scenarios. "They (the doctors) don't know the little girl we know," Andrea said. "All they have when they walk in the room is a chart. We have had to fight to have people save her. People look at quality of life in a different way than we do."
According to Dr. Gomes, a physician's job is to give options. "We, as advocates for the patient, have to give the caregivers of the patient the options to choose what they think is best for their child," she said. "I don't know if we ever assume anything. These are tough choices, not easy decisions -- not decisions you make without putting a lot of thought into them."
And the Spencers learned that being their child's advocate could be challenging, especially when it came to sorting through the plethora of professional counsel and when the stakes were high.
In October of 2002 Andrea and her husband made a tough decision, taking the advice of doctors who believed Mallory would benefit from a tracheotomy. Up to that point the Spencers had resisted such a course of treatment because, for starters, "it was like going backwards," Andrea said.
In addition, such a drastic procedure would ultimately silence their daughter's voice. And, apart from lending clues regarding her well-being, Mallory's coos were a precious window into her personality, Andrea said.
Now the Spencers rely on Mallory's facial expressions and have learned to watch for agitation and stiffness which might indicate a problem. But, for the most part, the many faces of Mallory bring them joy -- especially her smile which they waited a long time to see. And, when they're unsure, they try not to worry.
"You kind of have to get used to not wondering what's wrong," Andrea said. "Mallory's dad (Gerald) has always said that, if there were ever a time when she could talk, we would want it to be when she was hurting so we could know what was wrong. And so, at the same time, we would hope she'd never have to talk."
In hindsight, the Spencers are confident that the tracheotomy has played a part in Mallory's improved health during the past 5 1/2 years. When she did become ill recently, her tracheotomy made for less complicated treatment and Mallory was able to be hospitalized in Grand Island where the family was thrilled to receive visitors. Sometimes, just having people near during a time of crisis makes all the difference in the world.
In addition to supportive family and friends, Andrea has found lifelines in Sue Hamilton and Tammy Nance, both mothers of children with disabilities. "We met because of our kids 18 years ago and we have been best friends ever since," Andrea said. "It's like having two more sisters who have been through everything with me."
But it goes both ways. The friendship and support from those who understand the hardships of raising a child with disabilities comes with the price of facing harsh realities more often.
"I've watched friends lose children," Andrea said. "It will be three years ago this summer that I went to a funeral for a little boy who was 7 in July, and then I went to the funeral of a little girl who was 9 in August, and then I went to a funeral of a little boy who was three in September. Three months in a row.
"When you know people who have children with disabilities it (death) is just part of life. And yet it doesn't make it any easier just because you know it's possible. It's not right for any parent to have to bury their child, but it happens," she said. "For her to be 21, every day is a gift. Just when you think you can start feeling sorry for yourself a little bit, you just have to look around."
And, while the Spencers don't waste time feeling sorry for themselves, they certainly don't want pity.
"People often say to us, ’You have so much to deal with,'" Andrea said. "My response is, ’No, we just have different things to deal with.' And I never have to worry about her running out in front of a car, or her grades or whether she'll be asked to the prom.
"We just enjoy every moment with her."
At 21, Mallory will "graduate" from services offered through the school district this month. She won't don a robe or a hat with a tassel. At most there will be a Mylar balloon in the kitchen, but that's typical because Mallory responds to the light's reflection and the wind's dance -- and her parents will do anything to get a rise out of her.
Gomes has a great deal of respect for Mallory's parents. "To care for a special needs child for 21 years, it takes a lot of sacrifice and not everyone can do that," she said. "I think Gerald and Andrea have done an excellent job caring for Mallory."
So, go ahead and wish Andrea a happy Mother's Day. But if you ask her the secret of being a great mom, she'll just say, "We have the perfect child. We just do. Mallory will never say an unkind word or hurt anyone intentionally. If only the rest of us could be a little more like that."
More on developmental disabilities
According to Section 83:1205 of the Nebraska State Statutes, a developmental disability is defined as "a severe chronic disability other than mental retardation or mental illness that is likely to continue indefinitely."
Nebraska Health and Human Services answers the call for support whenever, in case of a person three years of age or older, there is a "substantial limitation in three or more of the following areas of major life activity as appropriate for the person's age: self care, receptive and expressive language development and use, learning, mobility, self-direction, capacity for individual living and economic self-sufficiency."
Along with medical professionals who become aware of a child's disabilities at birth or through medical visits, social workers, school personnel and even churches can play a role in directing a family to resources.
John Wyvill, director of Division of Developmental Disabilities for Nebraska's Health and Human Services, also encourages families to contact their local HHS field office or Educational Services Unit directly (Hall County is served by ESU 9 and 10). There families will receive services ranging from independent living skills to day habilitation, residential habilitation and respite services for those with compelling need, he said. And there they will find individualized community support on a highly individualized basis.
Among services offered through the ESUs are Assistive Technology Partnership, Central Nebraska Goodwill Industries, Center for Independent Living, Commission for the Blind & Visually Impaired, Commission for Deaf & Hard of Hearing, Developmental Disabilities (DHHS), Easter Seals, Hope Training School Association, Hotline for Disability Services, Mosaic, Mid-Nebraska Individual Services, Opportunity House, Vocational Rehabilitation and Parents of Children with Disabilities.
Currently, according to recent census statistics, an estimated 27,940 individuals in the state of Nebraska have a developmental disability (based on a 2000 study showing a 1.58 percent recognized prevalence of disability per population). Of those, approximately 4,512 individuals are receiving community services.
Educational Service Unit 10 -- (308) 237-5927 (services Grand Island)
Health and Human Services (Grand Island) -- (308) 385-6100 for Medicaid and (308) 385-6123 for Developmental Disabilities
