By Shannon Kaiser
Shannon Kaiser, a mother of two chronically ill children, shares how her family handles the stress created by her kids' medical conditions.
If you drove by my house this morning, it would've looked like a scene from an old TV show. Lunches were handed out, good-bye hugs given, and in a blur, three of my kids were out the door, laughing and running toward the big yellow school bus at the end of the street. Seems picture-perfect, doesn't it?
What you won't see is a mother who cries after the door is closed. A mom who's tired and scared but doesn't have time to dwell on it because she's needed elsewhere—to clean feeding tubes, prepare heparin flushes or start making arrangements for her son's brain surgery.
You also won't see a dad who's worked three double shifts in a row to stay ahead of the medical bills. You won't see him on his day off, too tired to be the father or husband he wants to be.
This is reality for our family, and we're not alone. My husband and I are like thousands of other parents with chronically ill children, struggling to take care of our kids and ourselves.
In 2003, our son Sean was born with Chiari malformation, meaning the bottom part of his cerebellum sticks through his skull and down into his spinal canal. It can be extremely painful. He's already undergone one surgery, and at age 7, he's getting ready for a second. It's scary, but we know his neurosurgeon at Children's Hospital Boston, Dr. Benjamin Warf, will do everything he can to help Sean.
On top of Sean's needs, our 4-year-old daughter, Brigitte, was born with Noonan syndrome, a genetic disorder that affects various parts of the body. Brigitte's case is more severe than most and treatment is hard on her. We see roughly 14 specialists at Children's, but her favorite is Dr. Daniel Kamin, of Children's Gastroenterology department. We're at the hospital a lot so it's not unusual for the halls to echo with the sound of Brigitte calling, "Kamin, come here!" She beams when she sees him, and his devotion to her is a great source of comfort to our family.
While we're thankful for the amazing care our kids receive, it's still a lot to deal with. People often ask, "How do you do it?" Honestly, I don't know how to answer. There are days when I just want to crawl under the covers and hide, but I know shutting down isn't an option. I have to find ways to cope.
One thing that has helped me is writing. When I started blogging, I noticed that most blogs about parenting sick kids focused on how well everyone is doing. I admire the authors' strength, but sometimes wonder if they're really as together as they seem. When I write, I strive to be honest. I don't want pity from my readers, but understanding. The parents of children with chronic illnesses aren't begging for sympathy, but that doesn't mean they're superheroes all the time. Sometimes we need to vent, cry or both. It gives us a moment to recharge our batteries. For families like ours, if you're not overwhelmed every now and again, you're not grasping the reality of the situation.
I think it's important for moms and dads of sick kids to embrace some of that fear and uncertainty. It's empowering. It drives us to do things most people can't imagine doing. It helps us help our kids.
That's not to say it makes things easy. The fear and strain caused by our kids' medical conditions has made life a struggle, but anything worth having is worth fighting for. So we continue to fight; for our kids' heath, for our marriage and for a semblance of a "normal" life.
And we find coping strategies. I'll keep writing, my husband will continue to work overtime and our children will learn that life isn't fair, but it's worth fighting for. It will make them more compassionate people and we'll all be stronger for it. And thanks to great doctors like Dr. Warf and Dr. Kamin, we get to strengthen as a family. That makes all the fighting seem worthwhile.