Kellie’s Column: Life with a Chronically-Ill Child
By Kellie Doligale
After a hospital labor and delivery, most new parents don’t really consider the possibility of being back in an emergency medical setting with their babies. We’re excited to go home and move on with the thrills of first steps, birthday candles and afternoons spent at the park. But for millions of American parents, that hospital stay is just the first in a long line.
My daughter was diagnosed with asthma before her first birthday. Having grown up with it myself and knowing how it limits your social life, activities and general sense of security, I was terrified to discover the telltale symptoms of an asthma attack in my child when she was only a baby.
Though asthma is the most common chronic illness in children, many doctors will not establish an official diagnosis before toddlerhood because numerous respiratory infections can cause similar symptoms. Evelyn, however, was among the percentage diagnosed early.
Since that first trip to the ER, we’ve been back about a dozen times, four of which required admission. Memories of holding her face in my hands while she was stuck with needles are burned in my brain, just like the ambulance rides and every single x-ray. Memories of these days spent in a hospital have become more memorable to me than my time in the hospital when she was born.
My intent is never to evoke fear or gain sympathy by discussing my experience as the parent of a sick child, and I’m very much aware that countless parents and children face more brutal struggles than the ones I’ll ever know. My experience has merely equipped me with some advice I hope will comfort at least one other parent when the stakes are at their highest.
The most valuable tip I have is to trust your instincts. In the same way that you can decipher your child’s babbling, you also understand the mechanisms of their body. If a particular issue raises concern, there is no shame in getting a medical opinion and having your questions answered. The best case scenario is that your child is fine, but in less fortunate times, quick action may be vital.
If you’re enduring a medical crisis, be polite but firm with the people treating your child. Whenever we’ve made a trip to the hospital, I’ve been clear with my daughter’s physicians that I’m knowledgeable about her condition and take the details seriously. I once watched her oxygen levels drop low enough to sound off the machine’s alarms in the hospital she was admitted to. When no one came to her room after a minute, I screamed words I’d rather not repeat into the call box until she got the proper attention. Agonizing though these situations are, a medical emergency is the time to be ferocious. The margin for error is non-existent.
When those emotions are running high and you’ve never felt more helpless, remember that this is the time to be a rock for your child. Be comforting and collected in front of them, and have a breakdown in the waiting room later. I’ve held Evelyn through tubes down her throat and the inexplicable horror of rectal thermometers. During one particularly awful ER visit, her vein blew during the first IV placement, and the nurses were forced to make her suffer through another. She screamed in sheer terror while I held her entire body. Afterward, I cried hard enough to burst a blood vessel in my eye while my own mother held me. No one but your baby expects you to be a hero.
Like almost any parent of a child with an incurable illness will tell you, I would give anything or do anything to remove it from my daughter’s life. The pain of watching your child suffer while your own parenting expertise falls short is a feeling that can really only be experienced, not explained.
Perhaps the most important piece of advice I can offer is to keep savoring each day, no matter how trying. Parenthood is truly a journey, and the bad days will make you more grateful for the good ones.
Read more of Kellie’s tips on being organized and prepared for health emergencies here.