I think that it’s very challenging having to listen to a child who cries because he’s in pain or can’t run. When you have to listen to him say, “I can’t run,” your heart really aches. My heart would ache last year when I would see that Tyson couldn’t keep up with the kids and was psychically exhausted, and he was in great shape for a three year old.
Debating to call 911 or go to the hospital
The most difficult period for Evan, and for us, was the period up until he was about five or six years old and needed to be treated with a nebulizer. There were a number of scary moments, typically at 2:00 or 3:00 in the morning when he was having difficulty breathing and we debated on whether we should call 911 or rush him to the hospital….When Evan was very little, the greatest challenge was trying to gauge how sick he was during an episode and whether he needed the Albuterol or not, whether I could safely give him another dose of Albuterol even though only two and a half hours had passed and you’re supposed to wait four hours, whether I should call the doctor even though it was 3:30 a.m. or should I try to hold out until morning? Things like that.
Trying not to isolate them
Well, I think the challenge is to keep your kid’s life as normal as possible in spite of the asthma. When Katie was younger, I would certainly think twice about sending her to a house that had three cats (she’s allergic to cats). And, when she was younger, she couldn’t report to me and tell me when she was having symptoms, and, her bronchi were smaller, so any kind of inflammation would cause her to have a severe asthma problem. Now she’s bigger, she can report to me when she’s having trouble, she can take her inhaler on her own, and she doesn’t get into trouble as quickly as she did when she was tiny. So it certainly gets easier as a child grows and matures, but when they’re little, I think the hardest thing is just trying not to isolate them.
When there’s no specialist being seen
I think a lot of kids’ pediatricians don’t refer them to a specialist, so the pediatrician will just try to manage the child’s asthma, and I think that’s a huge issue. Whatever we can do to lobby for insurance companies to allow pediatricians to refer asthmatic kids to specialists, I think that somebody like AAFA (Asthma and Allergy Foundation of America) (see EJ editor note below) should do. I’m not a physician but from some of the things that I would hear in support group meetings, it was clear to me that often a child’s asthma wasn’t being well managed. And that was because the family wasn’t with a specialist, and that was troubling to hear. I would always just say, “You might want to consider asking your pediatrician to refer your child to an asthma and allergy specialist.” Then they’d say, “Well, we’ve tried and tried and tried, and they won’t give us a referral, and the insurance won’t pay for it without a referral from the pediatrician.” So that was hard to hear. Most of these parents had kids with asthma and allergies.
EJ editor note: To learn more about AAFA and other asthma organizations, please visit our Resources section.
Keeping him away from triggers
Because Jason’s allergies cause his asthma and he’s only four years old, it’s hard to make sure that he doesn’t come into contact with all the things that could cause his asthma to act up. I mean, even him putting his fingers in his mouth could potentially cause a flare up, especially if he just touched something that he’s allergic to. It’s hard trying to keep the fingers out of a four year olds mouth – and he’s constantly got something in his mouth! There are times when he keeps his shirt in his mouth. What if he just brushed up against something he’s allergic to when he was wearing that shirt? It can get difficult.
Letting Evan go places (school, friends’ houses, sports practices) when I’m not there to watch over him and make sure he’s okay can be hard. I’m still always a little nervous when he’s playing down the street or when he’s at soccer practice for two hours and I’m not there. When he was little it was so hard to watch him be so ill, struggling to breathe, and to be strong for him and comfort him, when I was so scared and uncertain myself.
Other people not understanding
I think the biggest challenge I’ve had is other people not understanding that Brian can be in a situation where he can’t breathe. When my father was alive, Brian was allergic to something in his house. He had several attacks with my father in the house, and my father couldn’t understand how he couldn’t breathe. I mean, one minute he was breathing and the next minute he was gasping for air, and my father just couldn’t understand that. It just got to the point where I couldn’t bring him to my father’s house anymore.
Some people don’t realize how serious asthma and allergies can be
Sometimes dealing with extended family or friends can be difficult. Unless they’ve had firsthand experience with it, people don’t realize how serious asthma and allergies can be. We won’t go over to people’s houses if they have dogs or cats, because that can trigger my son’s asthma. But a lot of people don’t understand. They will say things like, “We’ll put the dog out,” or “Don’t worry, I just vacuumed.” They don’t understand that despite those things, the allergen will still be present in the house and will cause us problems. And once the asthma is triggered, it will bother him for a couple of days. It doesn’t go away just because we’re not near the dog anymore. People often think we’re being overprotective, and maybe sometimes we are, but when it comes to your child’s health and safety, I’d rather err on the side of caution.
When he says, “I wish I was not this sick.”
When Aiden gets a cold and starts coughing, my poor kid says, “Oh, Mama, I wish I was not this sick.” When you hearing that from your children it’s not fun at all – believe me.
The greatest challenge is probably that he gets sick more than other kids. I think that the day care center has a lower threshold for calling me than they would if Toby didn’t have asthma. It’s good because I don’t want them to under respond to his needs, but if he coughs they are on the phone with me right away. And they should be, but that can be hard. If another kid coughed they might mention it to that child’s parents at the end of the day, but because Toby has asthma they tend to be on the phone with me.
I miss work because he misses school
He misses more school than a lot of kids do because of the fact that he has asthma, and because I’m a single parent I end up missing more work because of the fact that he misses more school. So that’s particularly challenging having a new job– at my old job, everyone knew me really well and knew that I wasn’t a slacker, but having a new job you worry about coming off as a slacker if you have to miss a lot of work, even if it’s because your son has asthma. It is definitely something I worry about as a single parent– there is nobody else who can split the days that Toby is sick with me.
Always worrying about him
When Jordan was younger, the most difficult part for me was always worrying about him, what he was doing, and making sure he wasn’t doing anything to provoke another attack like the first one he had. Or keep him away from things that could provoke another attack (such as a fireplace or the woods/pine trees). I also hate to watch him have to take medicine every day. I know it could be worse and there are many more kids out there that are more sick and taking more medication, but I still don’t like to see him have to do this.
Why is it me?
Lucy sits there sometimes, I think especially since she has eczema as well, and says at seven years old, “Why is it me? Why is it me?” Sometimes she says she hates herself. I try to tell her, “Your asthma and your eczema aren’t YOU, they’re just some things you were born with; you don’t need to hate yourself about it.”
I think feeling like he’s different than everybody else is the hardest thing for Evan. His food allergies are harder for him to deal with than his asthma, but that may be because his asthma has become very mild, and more accommodations have to be made for him because of his food allergies. He doesn’t really want people to know he has food allergies and asthma. He’ll talk about it with me, but he’s embarrassed about it if it comes up in discussions with a friend or a teacher and he won’t say much about it.
Gets tricky if you don’t know the family history
One thing that about my situation that makes it a little bit scary is that I don’t know Toby’s family history. One of the first things they ask you when your child has a first episode of wheezing is about the child’s family history: “Who in the family has asthma?” and “What triggers those family members’ asthma symptoms?” In ICU admissions I don’t have any clue because Toby is adopted. I have some information about his family background, but his exposure to respiratory illnesses was not included. I think that it’s possible if I had been able to go into the hospital with him when he was 15 months and had those respiratory difficulties and known that he had a family history of asthma, he would have been more easily diagnosed. Because we didn’t really know, we had to wait and see. The fact that I have asthma is just serendipitous and has nothing to do with the fact that he does, too, but it helps me because having a father, a brother, and myself all having asthma, I am pretty familiar with it. But not knowing about Toby’s family history – that’s a little bit of a tricky thing.
Helping him to realize that he doesn’t have to be embarrassed
Since Evan’s asthma is more under control now, one of the greatest challenges for me is to help him feel that having asthma/food allergies is only one part of who he is, that it’s not the biggest part, and that he doesn’t have to be embarrassed about his illness. I tell my son that he is not any more “different” than anyone else, that everybody has issues they are dealing with, and that his issues are just different than his friends’ issues. Right now I think he has difficulty seeing it that way. Some people’s challenges are just more on the surface and thus more noticeable. I hope Evan having asthma and food allergies will make him a more tolerant and understanding person when dealing with people throughout his life.
Has to carry his Albuterol and spacer with him
I don’t think Jordan is bothered by his asthma in the way of it hindering what he does, but he may be bothered by it because wherever he goes, he has to carry his Albuterol and spacer with him. Between that and taking medicine daily he might say this bothers him more.
You can appreciate the beauty of a day with no breathing problems and no illness. It’s nice to be able to appreciate that. I mean, you don’t know when you have it good until you’ve seen it bad. I’d say that’s the greatest joy.
There’s a silver lining to the changes we’ve made
Well, when Evan was little, any time we went on vacation we would have to take his nebulizer and medicines with us. We were reluctant to travel too far from home, “just in case.” Also, if he had a cold, even a trip to a family member’s or friend’s house for a few hours meant we had to take all of that stuff with us. We pulled up our wall to wall carpeting, replaced our blinds with shades, we don’t visit people who have dogs or cats, and don’t own furry pets. But there are positive sides to these adjustments: I love my hardwood floors, I don’t have to dust the blinds and I don’t have to take care of a high maintenance dog or cat! I try to have my son look at these types of things this way the whole silver lining thing.
Rewarding to have him, period
The fact that I have my son, that nothing has happened to him to make him so ill that he ends up really serious is rewarding. I mean, it’s rewarding to just have him, period.
He’s a resilient little guy
Well, in general Toby is a great kid. I guess him having asthma is another opportunity to see how resilient he is when he does things like take his medication really well, or says, “I know that if I see Mindy (Toby’s nurse practitioner) I get medicine and I feel better.” It’s another opportunity, a different kind of venue, to see that he is a resilient little guy that I wouldn’t necessarily see if he didn’t have asthma.
They know how to handle themselves
There is nothing rewarding about it. That I can say. Well, I should say that both Caleb and Andrew know how to handle themselves and what to avoid. So having them be able to take care of themselves is one rewarding thing about it. Being able to train them and having them applying it to themselves when they need to is rewarding.
Well, I think Katie’s allergies and asthma have taught me compassion. I don’t think I was a very compassionate person before, but I am now. When I was younger, it was a lot easier for me just to turn my head away from people with problems. And I don’t do that anymore.
The greatest reward about this whole situation is I am better informed about asthma. The more you may read/learn about asthma, the better it is for everyone concerned.
It keeps me more knowledgeable
When he was younger he was always at the doctor’s. Now he doesn’t have to go as much; we got it under control. But because I have met so many different doctors over the years, and they have told me everything that was going on with Jason’s asthma at those times, I think I’ve gotten very knowledgeable about everything that’s going on with my child’s care. Some parents who have healthy kids probably think “Oh, it’s just a cold,” if their child hasn’t been sick very much when their kid could have pneumonia. And it’s just because they’re not used to going to the doctor so often. When I bring him to the doctor’s, I pay attention to everything they say. So I guess him having asthma keeps me more knowledgeable.
I learned to handle it
I try to find comfort in the fact that although it seemed overwhelming at first, I learned to handle it. With medicine and environmental adjustments, asthma can be controllable (to varying degrees, of course, depending on the individual case). I sometimes feel, “Why me?” or “Why him?” but when I look around – particularly when I’m at our pediatric hospital for Evan just to have a regular checkup – I see so many people who have far more debilitating illnesses. I realize things could be much worse, and that I should count by blessings.
He doesn’t object
He doesn’t seem to have any objection to taking maintenance medications every day. He holds the spacer on his own face. He would like to try to do it himself, although I won’t let him. He doesn’t have any negative feelings about taking the medication at this point. In the beginning, he really fought it. We did a little behavior modification with it, so that he got a little chocolate chip every time he took his medication. He very quickly got used to the medication and now occasionally, maybe once every three weeks, he will say, “I just took my medicine can I have a chocolate chip?” But he’s really forgotten about that as a reinforcer so it really did work.