Caregiver Village is all about caregivers. Most of us think about caregivers as older people – middle-aged, at least – caring for an aging parent. One of my airhead friends even said to me recently, “You write about caregivers? Ick! Caregivers are never very cool.”
Anyone who thinks caregivers are never very cool hasn’t met Shawnee Penkacik. Shawnee is not only cool, she’s young, vibrant and beautiful. She’s no middle-aged fuddy-duddy, I’ll tell you that! But Shawnee IS a caregiver. And she is very, very much a part of Caregiver Village. Let me tell you her story.
When you meet Shawnee, the first thing that gets your attention is the way she introduces herself. “I’m the mother of nine children,” she says.
“Whoa – stop right there!” is my instant response. I can barely handle one teenaged son – how on earth (not to mention why) would someone handle nine kids! But we’ll get there…
Shawnee starts off right away talking about her personal caregiver life as the mother of two sons with Mitochondrial disease, a disease that, frankly, I had to have her spell first, and then explain to me. It’s something I’ve never heard of, but as Shawnee talks about the disease she also shares that it’s much more common that anyone thought.
Shawnee pointed me to the United Mitochondrial Disease Foundation website where I learned a lot more about this disease. She also suggested I check out the website http://www.mitoaction.org. The diagnosis is tricky, as the disease affects so much of the body and looks different on different people. “Over 20% of moms are accused of Munchausen syndrome,” says Shawnee. I know what that means: the docs think they’re making stuff up just to get attention.
“When my first son was born, I had no idea what was wrong. He just slept all the time, and never wanted to eat,” says Shawnee. “When my second son was born showing some of the same symptoms, the doctors just thought I was projecting my experience with my first son on this baby. They were wrong – he’s also affected by the disease.”
As we talk, Shawnee shares a little bit more about herself. “I never thought I’d have kids,” she says. “The doctors told me that my spine was too affected by scoliosis to be able to get pregnant. I was OK with that, too. Guess God had other plans for me!” Shawnee talks about the challenges of getting her kids to their medical appointments, but she always says it in a positive way.
“I don’t drive (I have M.S.), but my friends, my mom and my husband drive me and the kids. I’m so lucky!” says Shawnee.
“But NINE kids,” I say. “What’s THAT about?”
“We just figured each baby was a blessing from God that we were meant to have,” she replies, and then continues to talk about how “lucky” she is.
“So many other parents of kids with this disease have it so much harder. We don’t have to worry about oxygen or other problems. I did have to learn how to put a feeding tube down my infant son without getting it into his lungs – that was scary. But otherwise, we’ve been really blessed.”
When I talked to Shawnee she was busy packing. “We’re moving to Arizona in a few days,” she tells me. “My husband got transferred, so we’ve started packing and will move there soon.”
As for connecting with health care professionals there, Shawnee has already hooked up with a mom’s support group, who is helping her find great medical support. She’s positive and looking forward to the move, excited, as well, that her husband can also find a dad’s support group there.
“My husband, who is my best friend and biggest supporter, handles it differently than I do,” she says. “I think it’s just harder for him to express his feelings, even though he’s willing to do whatever needs done to help the kids and me.”
Shawnee says her biggest caregiving challenge comes from talking with the health care providers. “I had to learn to keep a journal and to document everything. Most importantly, though, I had to learn to stand up and fight for my kids. That was hard for me to do at first, but it’s been the toughest challenge and the most important thing I’ve learned.”
Connecting with other caregivers has been the best stress-reliever for Shawnee. “Many of the moms I connect with online have it so much harder than I do. I think, in many ways, my problems are really just inconveniences, especially compared to other moms.”
Learning about the disease and educating herself about caregiving has been extremely valuable, too. “I found a scheduler through Caregiver Village that is essential to helping me keep track of all the daily medications my kids take – even though it was designed for people with Alzheimer’s disease. It’s perfect for me! I’ve also learned a lot more about taking care of myself, and am trying hard to do that,” Shawnee says.
I can only imagine how hard keeping a marriage intact would be with nine kids, not to mention two kids with very special medical challenges. When I ask Shawnee how she does it she replies, “It’s easy: we laugh a lot. We try to have a weekly date night, too.” Shawnee talks about her husband with fondness and a genuine sense of romance.
“Sharing my story is one way I can help other people,” says Shawnee. “It can feel like you’re all alone – but there are actually lots of us facing really tough caregiving situations. If we can support each other it makes the whole experience a lot easier.”
I think sharing Shawnee’s story can be more than encouraging. For me, at least, it provides some kind of perspective that maybe my own caregiving challenges aren’t all so bad. If Shawnee can feel lucky and blessed, so can I!