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Making Transitions

When Tina and Marc reflect on the past year, they realize that it’s been one of transitions for their family. They moved to a new home in a new community. The move meant a new school for their two daughters, Abrielle and Kherrigan. And in spring they welcomed their son, Emile, to the family. All that change would be difficult for anyone but this family has an additional challenge in that Kherrigan lives with complex care needs that require round-the-clock care.

Kherrigan’s challenges are unique. Imagine what it’s like to live without sleep. Your brain is constantly engaged, never allowing your body to rest. You are always exhausted. Add to this the challenge of navigating a 3-dimensional world when your vision is 2-dimensional, making it impossible to see changes in depth. This makes unfamiliar places an adventure in walking, especially when you don’t have a real appreciation for what might be dangerous to you. And the challenge is, you can’t tell anyone what’s going on inside of you because you are non-verbal. This is 7-year-old Kherrigan’s world and yet her mother, Tina, says Kherrigan does really well with what she’s been given.

“She gets frustrated occasionally and because she can’t sleep, she’s exhausted all the time but she adapts quickly,” Tina says.

Kherrigan’s doctors are unsure of what it is that prevents her from sleeping. During the summer, they tried a medication to help her sleep but it had the opposite effect, ramping up her brain activity so that she was even more wired-and-tired. Her parents came up with their own solution, putting a little tent in her bedroom for her to sleep in, allowing them to zip her in for the night so that they could get more rest and she would not be a danger to herself.

“She seems really happy with it and we sleep better,” Tina says.

Still, having the medication change come right at the birth of their son was “really tough.” So when this family really needed a break, Matthew’s House came to the rescue.

Tina with her new baby, Emile.

“They had a cancellation and Wendy (the manager at Matthew’s House) called and told us we could bring Kherrigan for 3 days,” Tina says. “Emile was just 2 weeks old, so we really needed the break.”

Kherrigan had been to Matthew’s House before and loves it there. While she was enjoying one-on-one attention from a qualified and loving caregiver, Marc, Tina, and Abrielle brainstormed things that they could do that they would not normally do.

“Well, first we all had a nap,” Tina says, with a smile. “Then we decided we’d go on a hike.”

They spent the day at Lindeman Lake, taking in the scenery, enjoying the trails and unwinding. Tina says one of the hardest things for her is not feeling guilty about doing something without one of your children. The fact that Kherrigan enjoys Matthew’s House so much helps and knowing that she is being engaged and safely cared for makes a difference.

“It’s important to me that she’s not just sitting in some facility but is still learning, is getting the attention and care she needs and I don’t have to worry,” she says. “Matthew’s House staff are awesome and it is so lovely there. We’re going to have to do more visits there!”

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