Eleven years ago and 14 weeks early, Liam Nielsen was born in a military clinic in England and then airlifted to a military hospital in Germany with a NICU. “He got the short end of the preemie-stick and had a rough transition into life,” shared his mom, Cari. “But raising Liam has taught me I can do anything. He’s taught me to stop sweating the small stuff and that most of the stuff I sweat is small. He is a hilarious, creative and lovable kid and I’m grateful for everything he is to our family.”
Shortly after Liam was born his doctors completed several diagnostic tests, and Cari wanted their best guess of what his life would be like. “I asked them to level with me and give me statistics about how kids like Liam grow up,” Cari shared. The doctors respected her wishes and clearly explained Liam’s diagnosis and prognosis.
Liam had brain hemorrhages, a potentially blinding eye disorder and a leg deformity. He also had too much fluid around his brain which damaged it before his doctors were able to remove the fluid. This led them to believe Liam would probably never talk, walk, see or hear, and they shared this prognosis with Cari. Showing amazing strength, Cari accepted their prognosis, adjusted her expectations and began to prepare for life with Liam.
But as Liam grew up, he proved himself to be an outlier. Today, Liam is able to listen and will often repeat words he hears. He has visual impairments, but can see. He has cerebral palsy, but can walk with a walker. For years he was only able to eat through a tube, but he recently began eating many foods orally. He has Autism, but is doing well in therapy. Needless to say, his family is shocked and overjoyed with every new skill. “I rejoice in every little thing he does,” shared Cari. “Everyday he does things he was not supposed to be able to do. It’s awesome!”
Liam has made incredible progress and is much healthier than anticipated, but he still requires a lot of care. “He depends on us for everything,” shared Cari. “From getting ready in the morning, to medication and eating and everything in between. He needs constant, round-the-clock care.” This is especially difficult for Cari when her husband Dan is deployed. As Dan serves our country, Cari serves their family, caring for Liam and his two typically developing siblings without much support.
While all families raising children with special needs experience intense stress, those dedicated to serving our country encounter added complications like deployments and frequent moves. The Nielsen family moves every two to three years and has lived in Texas, Washington and Colorado. They moved to Virginia almost three years ago and are in no hurry to leave. They like Virginia because of the services and resources it provides for families raising children like Liam. “We’ve lived all over, but this is the first time we’ve seen anything like Jill’s House,” shared Cari.
Before Jill’s House, Cari only left Liam with family members. He had severe separation anxiety and screamed anytime she tried to leave. “But it’s not that way at Jill’s House,” said Cari. “When I tell Liam he’s going to Jill’s House, he gets excited, repeats ‘Jill’s House! Jill’s House!’ and flaps his hands. After we arrive and I help him out of the car, he says, ‘Bye Mom!’ and walks straight inside. He’s never anxious or afraid at Jill’s House and is always happy to be there. I’m grateful he has a place like that. A place he can have fun and do his own thing with people who love and care for him.”
While Liam is at Jill’s House for a weekend, Cari can rest and spend focused time with Liam’s brother and sister. The whole family has a moment to breathe and regains a sense of normalcy. When Dan is deployed and away from home, Jill’s House also gives him peace of mind. “He’s glad to know I have support and an occasional break when he’s gone,’ shares Cari.•
ABOUT JILL’S HOUSE
Jill’s House celebrates children with special needs and provides much needed relief to their families in the greater Washington DC area. They serve boys and girls, ages six through seventeen, with intellectual disabilities without regard to race, religion, or ethnicity. Jill’s House provides a safe, fun place full of adventure and tailor-made activities to children with special needs while giving their parents and caregivers desperately-needed time to rest and recharge. To ensure that parents and caregivers get a real break, typical siblings are welcome to stay at Jill’s House.
It is Jill’s House’s hope that their model will help change the way communities address the needs of families with children with special needs.