My two-year-old knows how to say “nebulizer” and is a pro at taking medication. My five-year-old keeps us on our toes, making sure her sister gets her twice-daily breathing treatment and her evening pill. I carry an inhaler in my diaper bag, I’ve made space in the closet for storing extra asthma equipment, and I’ve finally learned how to pronounce “budesonide.” But we still haven’t quite learned how to live with asthma.
Our first trip to the hospital was almost a year ago. Elizabeth had a cold, and she was wheezing. It had happened before, but it seemed like it might be getting worse, and I was beginning to worry. I took her in to urgent care so they could have a look. To my surprise, they sent us to the ER, and she stayed there overnight. It was the first of four hospital trips during 2016; four ER visits, two overnight stays, one pneumonia diagnosis, two diagnoses of reactive airway disease, and then, eventually, they finally said she has asthma.
She only has it when she has a cold, but she catches colds frequently, and the ensuing asthma attacks are both fierce and stubborn – they take her into serious wheezing, and her oxygen saturation dips, and she doesn’t always respond quickly enough to the albuterol we give her when it happens. Once, her breathing declined so precipitously that the ER even gave her oxygen.
I have never been scared that she would stop breathing – the worry I’ve felt when she begins to decline is more vague than that, just a gut-level knowledge that she needs help, this is not OK. I am grateful that we live so close to the hospital, and grateful for the ER staff who each time have treated our wheezing child right away.
I’ve found myself somewhat bewildered by this new world of chronic illness. Oh, it is so mild compared to what many other families have experienced! I have not even an inkling of what parents experience when their child has a life-threatening disease. But still – it has been quite an experience.
One flash point for me was when, after Elizabeth’s most recent attack, her doctor decided to add a pill to her daily preventative medicine regimen. I looked up the medication online to learn more about it, and was stunned by the list of possible side effects. I was grieved at the thought that my baby might get headaches from her medicine – would she even know how to tell me about it? – and alarmed that the medicine could cause mood changes or aggressive behavior. What if I lose my sweet baby girl? Of course those side effects are rare, and she’s been on the new med for weeks now without any trouble, praise God. But just the possibility of all that woke me up to the seriousness of the situation. Is she really so sick that we must risk all this?
As our journey with asthma has progressed, we’ve become more and more wary of germs. I quit going to the Y months ago so Elizabeth wouldn’t be playing with sick kids in childcare there. More recently, we’ve gone to fewer and fewer playgroups, and called off multiple playdates due to friends’ kids having colds. We don’t use the cry room at church anymore or send Elizabeth to childcare at People of Praise meetings. When we bring the girls to an event with other kids, I am on high alert the whole time, wincing at the sound of a nearby cough, rushing Elizabeth to the bathroom to wash her hands when I catch her playing with a runny-nosed friend.
Often we need to simply stay at home by ourselves for awhile. Elizabeth is more susceptible to infection when she’s already recovering from a cold; so when she gets sick, first we stay home to keep other people healthy, and then we stay home to keep Elizabeth healthy. And then we stay home because I simply forget to start going out again. Or we schedule a playdate, but it gets called off, because little kids just get sick a lot! One way or another, it’s common for weeks to go by when I don’t take my younger girls anywhere but preschool pickup and grocery shopping.
I am grateful that Elizabeth is a peaceful, contented little homebody. She is easy to be with and easy to take care of. She loves to help me bake, and is very good at it for her age. She loves to color, and to play with toys, and she can play independently for most of the morning while keeping up some low-key chatter with me. Although she enjoys her friends, she has yet to complain about how infrequently we see them, or to be sad that we miss playgroup so often.
But I know the way we are living right now is not sustainable long-term. Hopefully, it will not be necessary to live like this long-term. Maybe the asthma attacks will become less serious as she gets older, and we won’t need to keep her away from every germ; or maybe the new medication will prove its worth and she won’t have any serious attacks anymore.
I haven’t written this post to share wisdom about how awesomely we handle this challenge, and I haven’t really written it to ask for your prayers either, although prayers are always welcome. I mostly just wanted to share with you, my friends, what our life has looked like lately – and maybe to clarify why those of you in town haven’t seen us around at playgroup much! This is our life. I hope it won’t look like this for very long, but this is where we are right now.