Melissa and Michael Nirelli have three rambunctious kids. Like many families, they’re busy with day-to-day life while getting ready for the holidays.
“Well, I feel like it’s the hustle and the bustle right now and trying to get everything done and trying to make everything as magical as possible,” Melissa Nirelli said.
That can be stressful enough. But they also have to deal with the everyday fact that their four-year-old daughter Abby has an ultra-rare neurological disease called Alternating Hemiplegia of Childhood, or AHC.
“It is a one-in-a-million disease and she can be a typical four-year-old and something will trigger her and she will become completely paralyzed on one or both sides,” Melissa Nirelli said. “She will not be able to talk, eat, feed herself, anything like that”
And since they never really know when it might happen, maybe out at a store or a family get-together — it adds an extra layer of anxiety when things are already hectic around the holiday season.
“Trying to get your stuff done around that, you don’t know if you can go out to the store and go shopping, you don’t know if you can go outside and play with the other kids,” Michael Nirelli said.
Marriage and family therapist Joe Clem says on top of the typical worries this time of year, families who have someone with a disability like the Nirelli’s can experience heightened emotions.
“When we add the elements of disabilities we add the element of grief and loss to the parent, to the caregivers,” Joe Clem said.
So he suggests families practice tolerance, patience and something as simple as counting to ten — to pause and understand what’s triggering those emotions during difficult circumstances.
“Begin to train ourselves to recognize and return and let go of that emotional reaction, that burst, is the key to emotional maturity and increased happiness in our lives,” Joe Clem said.
Clem says it’s also important to recognize your inner strength, that you’re doing your best to care for your loved one even in the most challenging moments.
It’s a perspective the Nirelli’s take to heart.
“It could be worse and we just are lucky that we have our three kids and we have the family and support that we do and just hold on to that to try to get through these next couple weeks,” Melissa Nirelli said.
And lots of love to help make it a little easier.