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Those who have been there understand

People may think they understand the heartache and fear that grips a family with a critically-ill child.
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Lisa Moore gets her first snuggle with baby Boyd

People may think they understand the heartache and fear that grips a family with a critically-ill child.

But only those going through the same agony can truly relate to their pain — and Ronald McDonald Houses make that sharing possible.

“Our goal really is to bring families together,” says Christina Arnold, director of family and volunteer services at Ronald McDonald House in Calgary.

“I’ve watched family members cook with each other. Share meals with each other. Go to a number of activities with each other. They start to form bonds and friendships that I truly believe for many of them will last a lifetime.”

Lisa Moore, who lives 30 km west of Red Deer, spent 41 days at Calgary’s Ronald McDonald House after she gave birth to premature twins on May 15, 2008.

Westin and Boyd were born at 27 weeks. Boyd weighed 1.140 kg (2.5 pounds) and Westin was a mere 900 grams (1.9 pounds).

“Outside of their legs and arms, they could fit in the palm of Brian’s hand,” said Moore describing how tiny her boys looked in her husband’s hand.

“There are just so many risks when they are so early like that. It’s very much day by day.”

Moore said she didn’t understand what a “godsend” the house was until she spent hours by the twins’ incubators and rushed back to the hospital twice after frightening, late-night emergency calls.

Isolated from family and friends, Moore said it was the other families at the house she relied upon.

“Outside of everyone’s own stress, the bonding that takes places is unbelievable.”

“They become your support network. They become your second family. They become a huge part of your life.”

When families were called to the hospital, it was the other Ronald McDonald families who cooked and ran meals over to the hospital. When she spent late nights in the hospital’s special nursery, she’d return to find a note in the fridge along with a plate of nourishing food.

She recalled how one mother, who returned from the hospital after her six-year-old son died, still took the time to ask Moore about her twins.

“That gives you a little bit of an indication how caring and how strong the families grew together. It’s unexplainable,” said Moore, gulping back her tears.

Arnold said sometimes the families join together in loud, boisterous support and other times it’s quiet and calm — but the connection is still there.

“This house is very magical.”

She recalled how the death of one child had families racing back to the Calgary house to support the grieving family.

“Within a few days of the difficult news, those people travelled from all over Western Canada to be with this family here. It’s quite extraordinary.”

Another time, she saw families rushing to support a mother who generally kept to herself.

“I literally saw all these families at the house gather around her. They came from the hospitals, the house, wherever they were, and literally enveloped her. I didn’t know that sense of community was developing.”

The communal kitchen and dining room helps brings families together. They can move in and out of the gathering spaces and their private bedrooms depending on whether they want some quiet, alone time or company.

After four and a half weeks at Foothills Hospital, Moore’s twins went to Rockyview General Hospital for two weeks, then it was off to Red Deer’s hospital for six weeks, before her twins returned to Calgary for hernia surgery, and lastly a few more days in Red Deer.

While the twins were in Red Deer, Moore said she met mothers from Fort McMurray, Saskatchewan, even a mother from Idaho who went into premature labour while visiting Alberta.

Sometimes babies have to be transferred out of Calgary or Edmonton to Red Deer to make room for new babies in critical condition. For now, families must stay in Red Deer hotels until the Ronald McDonald House is built near Red Deer Regional Hospital Centre.

“It’s a desperately-needed service,” Moore said.

Heather Moon, the maternal child social worker at the Red Deer hospital who works with families on the pediatric and maternity wards and special care nursery, said a Ronald McDonald House will provide a refuge for families where they can deflate, absorb information and catch up on their energy.

“We’ll have parents that are well-rested, less anxious and informed a lot better because they will be here constantly. I can hardly wait.”

szielinski@www.reddeeradvocate.com