I’ve been out of work for two days, but this is the first time for Caleb being that bad and for me having to stay out of work because of his asthma attacks. If he has to stay in the hospital again, though, I don’t think I would have to miss too much work. All my family lives in the same building, so it’s easy for me to just bring him downstairs or upstairs and they can watch him.
Having extra hands around
With my younger son I do worry more when I am administering the medicines because he is not that old yet, so I have to watch him to make sure he manages himself correctly. But if it’s not me watching him, his father will do it or my sister or my mom, so it’s not really that bad. My family all lives together at home and everybody takes care of everybody. Having many people around seems to help, all the extra hands.
MassHealth helped
I was a single parent for four years and I’ve had to take a lot of days off work because of Tyson’s asthma. I got fired from a job because I had to take time off from work when he had to go to the hospital and be evaluated and go through the treatments. It’s hard to lose a job because you’re taking care of your kid, because then you have no money. But then there is always MassHealth who has, Thank God, helped me through a lot of things. When I’ve gotten down and had no job they take care of the children which is good. They might not take care of you, but they take care of your children.
A therapist helped
I think getting parents support from people who understand what life threatening allergies are is a huge issue, and one that I think gets dismissed. My children are fourteen months apart, so even if Katie wasn’t sick, I would’ve been a basket case because I had two toddlers and no family around. But early on in my work with the Asthma and Allergy Foundation of America (AAFA) (see EJ editor note below), I met a woman who spoke at an AAFA support group about food allergies and asthma. She was a therapist, and she had a child with severe food allergies and asthma. So I started seeing her as a therapist. And that really helped, because prior to that I had gone to see a therapist about all of my fears, and the therapist didn’t have a clue about what life threatening food allergies were.
When I found someone who knew what it was, knew what I was living, it was very helpful for me. I feel for parents who need support, and who are seeing professionals who have no idea what it’s like to live a child who has allergies and asthma. People seem to understand diabetes and a lot of other chronic illnesses, but ten years ago, they didn’t understand food allergies, because it was just emerging in the pediatric population. I think the same thing is true with pediatric asthma. It wasn’t very efficient to go see a professional who had no clue about what it’s like to live that life.
EJ editor note: To learn more about AAFA and other asthma organizations, please visit our Resources section.
Helping others helped me
I used to be on the board at the Asthma and Allergy Foundation of America (AAFA) (see EJ editor note below). I think doing that saved me from losing my mind, because I was able to help other people, and I didn’t feel so alone. We did lecture series, so people like Katie’s doctor would come and speak with us. It wasn’t just sitting and talking, but it was lecture series, education, and there would be discussion afterwards. I think things like that are important, so people don’t feel alone, and that they know there are other people out there who have gone through this whole thing and are willing to share information. I think that’s really important.
EJ editor note: To learn more about AAFA and other asthma organizations, please visit our Resources section.
Asthma camp and regular camp
When she was ten or eleven, Bridget went camp for a week. She went for one week for two summers. She did really well there, and it gave her some independence, and she was really happy about that. Then they moved the location of the camp to a place that I thought was not as clean as the environment should’ve been, so I decided not to send her there. A few years later, I did send her to a regular camp and they were very good about her having asthma because they did have other kids that had asthma who went there. So that worked out well.