Childhood illness can be difficult on the whole family. Shannon Kaiser, a blogger and mother of two chronically ill children, shares how she and her husband deal with the stress created by their children’s medical conditions.
If you drove by my house while the kids were getting ready for school 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 are out the door, laughing and running towards 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 prepare saline and heparin flushes and clean feeding tubes, 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 medical bills. You won’t see him on his one day off, too tired to be the father or husband he really wants to be.
“For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation.”
On some days, this is the reality for my family, and we’re not alone. My husband and I are like thousands of others parents of chronically ill children, struggling to not only take care of their kids, but themselves as well.
In 2003 our son Sean was born in with Chiari Malformation, which means the bottom part of his cerebellum sticks through the base of his skull into his spinal canal. It can be extremely painful. He’s undergone one surgery already, but it didn’t do enough to alleviate the pressure on his skull, so at the young age of 7 he’s getting ready for a second brain surgery. It’s scary, but we know that his neurosurgeon, Dr. Benjamin Warf, is the best and will do everything in his power to help him.
In addition to Sean’s needs, our 4-year-old daughter Brigitte was born with Noonan syndrome, a condition associated with congenital heart disease and short stature that affects about one in every 1,000 births. Brigitte’s case is more severe than most and treatment is hard on her. She’s currently fed intravenously and receives treatment for a laundry list of other symptoms. We see roughly 14 specialists at Children’s Hospital Boston, but her favorite is Dr. Daniel Kamin, of Children’s Gastroenterology Department. We’re at the hospital a lot and it’s not unusual to hear Brigitte calling “Kamin come here!” as we walk down the halls. She beams when she sees him, and he has brought such a great source of comfort to our family with his devotion to her.
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 that I don’t want to do it anymore, when I just want to crawl under the covers and hide. But then I look into our children’s eyes and remember shutting down isn’t an option. I have to find ways to cope.
One thing that has helped me is writing. But when I jumped into the world of blogs, I noticed many of my fellow bloggers writing about parenting sick kids seemed focused on how well everyone is doing. I admire their strength but sometimes wonder if they’re really as together as they appear. 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 sympathies, but that doesn’t mean they’re super heroes all the time. Sometimes we need to vent, cry, or both. When we do it gives us we a moment to recharge our batteries. For families like ours, if you’re not overwhelmed every now and again, you’re not fully 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 never imagine having to do. 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 our lives a struggle, but anything worth having is worth fighting for. With that in mind we continue to fight; for our kids’ heath, for our marriage and for a semblance of a ‘normal’ life. We find those coping strategies.
For my part I’ll keep writing, my husband will put in extra hours at the job and my children will learn that life isn’t always fair, but it is worth fighting for. It will make them more compassionate to other people’s needs and we’ll all be stronger for it. And thanks to great doctors like Benjamin Warf and Daniel Kamin, we get to strengthen as a family, which makes all the fighting seem worth while.