In my last post, From One Parent to Another: Tips to Prevent Your Child's Flare Ups, we discussed one of my daughter's asthma flare ups and some tips to (hopefully) prevent the same occurrence at your house. What we didn't discuss is the emotional toll that it takes to deal with a child—or two children in our case—that have a chronic medical problem like asthma.
Quite frankly, I went back and forth about whether I should write this post. I know we are very blessed in comparison to what many families deal with. Yet, I also know there are a lot of asthma parents out there who feel like no one "gets it." Many of them messaged me after the last post and said as much, so it encouraged me to continue sharing.
Here are our tough moments, some of things we wish people would understand and how we cope when they just plain don't—from one asthma mom to another
It hurts not to be able to fix your baby's pain.
** It is hard on a mama's heart to have your sweet child crawl up in to your lap—tears stream down her face—and ask: "Mama when am I going to feel better?"** It's even harder when you don't know the answer to that question.**
After snuggles (and stepping out of the room to cry myself) I tried to allow my daughter to talk about her frustration. Letting her know it's ok to feel mad, sad or frustrated and acknowledging her feelings can help her process those emotions. My daughter was old enough to have a short conversation about how the new medications work - that they need time to kick in and that the body needs time to heal.
The sleep struggle is REAL. When my daughter isn't breathing well** bedtime isn't a reprieve - it's scary!** My friend's mother died in her sleep from an asthma attack so when one of my girls isn't breathing well I'm not sleeping well. Most asthma parents will tell you the same thing. Instead of sleeping I am checking on my little one frequently and often doing breathing treatments well into the night.
Not only do I miss out on sleep but ALL of my kids do. They hear the all-night coughing, medicine delivery and the "mommy I don't feel good so I can't sleeeeeeep" conversations. The more days go by without good sleep the harder it is to cope with normal life stressors.
We miss out... and we hate it.
We've missed out on visiting with family, on social events and on maintaining consistent church attendance due to asthma or lengthy illnesses related to it. I think what people don't understand is that during a flare even if my girl actually makes it through the entire day of school that might be all she can muster. She might have "looked normal" at school but there have been many days where she's come home, had a bath and gotten right back into bed.
Even when my asthmatics are doing well we still have to monitor the air quality for the things that bother them. Going on a hike when the pollen, mold or wind is high may not always be possible. Hanging out in front of a campfire, which I loved doing as a kid, is just plain impossible as smoke is a huge trigger for them. There are a lot of things they can do but don't take it personally if we have to skip the things they can't do.
I don't want people to feel sorry for us or change plans for us - I just want them understand. What I don't need is a reminder that I missed something and I definitely don't need a reprimand. I know everything we've missed. Every. Single. Thing.
What might be a cold for you could mean weeks of illness for an asthmatic.
Asthma is the leading cause for excessive absences in school age children. What's interesting is that it's not that my girls catch more illnesses (even though we are frequently asked that question). According to their doctor, they catch about the average amount of illnesses. It's just that they stay sick so much longer.
A simple upper respiratory infection or cold might make a child without asthma feel icky for a few days or at most a week. For an asthmatic child it can start a flare up that lasts weeks. My girl's most recent flare up has lasted five weeks. Not only do they stay sick longer but because asthmatics already have a hard time breathing they often experience more severe symptoms.
So, when I ask you to wash your hands or reschedule plans if you've been sick - it's nothing personal. I don't need to be made fun of for being a germaphobe. These precautions have everything to do with maintaining my child's optimum health - not some percieved paranoia.
Trusting someone else with my asthmatic is terrifying.
Anytime my asthmatic children have to go somewhere without myself or my husband we are counting on another adult to pay attention to their breathing. Whether it be at school, church activities or hanging out with friends - it's scary to relinquish that control to someone else. We have to be vigilant to educate anyone whose care they might be in about what triggers their asthma, what the signs of an attack might look like and what medications are needed should that occur. Thankfully our girls are ten now and have started showing more ability to use their inhalers on their own and carry their own medication with them.
Last week my little one's asthma was so flared up that it was excruciatingly hard to send her to school. I would pray the entire day that she'd ask for help if she needed it or that someone would pay enough attention to notice if her breathing was labored. Having cough variant asthma makes it a little harder to catch in a classroom full of kids with colds or allergies. Our school nurse is amazing and would check on her frequently and we are blessed with some very conscientious teachers as well.
I am so thankful for the friends whose children also have asthma because they are an amazing sounding board for everything from tips that have helped their child, physician recommendations and just plain old compassion. If you are reading this and are a part of the "asthma parent club" I hope that HealthCentral can become a resource for you as well. After all, we asthma parents have to stick together!
_Jennifer has a bachelor's degree in dietetics as well as graduate work in public health and nutrition. She has worked with families dealing with digestive disease, asthma and food allergies for the past 13 years. Jennifer also serves the Board of Directors for Pediatric Adolescent Gastroesophageal Reflux Association (PAGER). _
See More Helpful Articles:
New Research Fights Pediatric Asthma Epidemic
6 Tips for Asthmatics to Manage Spring Allergies
5 Triggers That Could Be Wreaking Havoc On Your Asthma
The Cost of Asthma: Are you financially burdened?