Parents:
Michael and Dalene Swart
Profession:
Family run business
Age of parents:
36 and 33
Child’s name:
Meghan
Age: 8 years
Diagnosis of child:
Cystic Fibrosis
What are the biggest challenges facing your child on a daily basis?
“But is it a bad thing?” A question that stopped me dead in my tracks. Meghan’s sweet friend asked about why Meg’s has to take enzymes before dinner.
“Is cystic fibrosis a bad thing?” I think all the blood drained from my face. “Well, yeah. But, no. But yeah, kind of. I mean, it’s not good. It’s just something that we do.” I didn’t know what to say. Believe me, I knew this day would come. I knew the questions would arise. I knew the friends would want to know. Hell, I knew she’d want to know.
I mean, CF isn’t good. Doing treatments, taking meds, dreading doctors appointments, worrying about sickness. It’s a mama’s worst nightmare. And sometimes that really sucks.
What are the happiest moments you have with your child on a daily basis?
And even though CF sucks, it won’t suck forever. What the world needs to know about Meghan is that she loves art and has more words before 9am than some people do all day. They need to know that she loves strawberries and anything pink.
Are you married?
Married
Has your special needs child had an effect on your marriage?
Mike and I celebrated 13 years of marriage this last December. And when I say celebrated, I mean it. When I think back about our years together, I often marvel at how much we’ve walked through. We’ve mourned together, prayed together and rejoiced together.
Are your family and friends supportive?
It can be easy for families of special kids to feel ostracized and left out a lot of the time. Cystic fibrosis is complex and sometimes downright frightening. The best way to show support is by just showing up, reaching out and being there. Ask the questions. Send texts and say the prayers - it matters.
What has your child taught you about yourself, both positively and negatively?
She’s taught me so much about taking life in our stride. There’s no use worrying about a future we can’t predict. Covid has kicked my butt for so many reasons, but I’m reminding myself that it’s just a season. I’m not sure if life will ever truly be “normal” again.
What is your dream for your child?
May is CF Awareness Month. My dream is to get my hands on Trikafta at an affordable price. While it’s NOT a cure, this drug has been such a huge milestone for CF. I’ve heard so many success stories and we’ve been waiting patiently for the day when Meghan can go on it.
