Like Mother, Like Sons: Part 2
Editors note: This is part 2 of Jed's interview, and part 1 can be found here.
If you didn’t read “Part 1” yet, Brenda (32) is diagnosed with RA, while Miguel (15) and Paul (11) are both diagnosed with AS. In the first part, we discussed what it was like for both Brenda and the boys to receive their diagnoses. In this part, we will focus on what it is like for Brenda, as an arthritic patient, to care for two boys with chronic arthritis, how the boys manage school and other areas of their lives, and Brenda shares some advice to other parents who care for children with chronic illness.
Parenting with arthritis
Living your own life with chronic arthritis can be the greatest task, but when you are a parent, you can’t take a day off to recover. I asked Brenda what it is like to parent in pain.
“It's not easy trying to parent while in pain, I struggle. I have to do everything other parents do. From school appointment to [doctor’s] appointment, and since their diagnosis, I was flaring bad. Learning to manage appointments for myself, and the boys, is still a work in progress. I'm blessed that I have a supportive husband who helps out.”
She is also very thankful for having some very understanding boys.
“My sons both know the pain of a flare-up, so those days I'm in pain, they help out more. I have to push through the pain and do my part, just like they have to push through it while they are in school or at appointments or chores.”
As you might expect, as for any parent, it is difficult for Brenda to see both her boys having to navigate their lives with a chronic illness she has some understanding of.
“For me seeing my sons battle the pain of arthritis has been hard. I can truly say that I feel their pain, and know what it's like. I know how hard it is to get up out of bed when you're stiff. My sons are both like me, they hide their pain as much as they can. No mom wants to see their child in pain, with swollen joints.”
However, Brenda also understands that even though it's hard to see her boys in pain, she needs to let them learn their own coping strategies.
“As a parent, you want to take it all away from them. Just like I am still learning to cope, they also have to learn to manage the symptoms. I have to remind myself that if I baby them, they will not learn to manage the symptoms.”
She admits, however, that it is not always easy.
“It's hard seeing my sons struggle, wanting to do activities that other kids do and they can’t. I’m a mom, it's normal that I would want to just hold them and say 'you can skip on chores tonight.' Which isn’t good for them, or myself.”
Life as a young spondy
As I mentioned in Part 1 of this series, Miguel and Paul were both diagnosed with AS around the same time, but their symptoms and struggles are different, and so are their coping techniques.
“Miguel works out and is a lot more physically active. He continues doing boxing. He is on top of his medications and is always moving. He copes by not letting the 'pain' take control.”
For her younger son, Paul, who has a more advanced form of AS, isn't as physically active as his brother, but still manages to cope with his condition.
When it comes to friendships and school, both boys act as advocates for themselves.
“With friends, they open up about AS and teach them about their disease. Awareness is powerful. They both have learned to speak up to the teachers and others when they cannot do activities.”
I loved hearing this about them. Getting kids on track to be advocates and then patient leaders down the road means that as long as we have AS, we will have those who will speak up for patients.
I wanted to know how both Miguel and Paul each handled their day to day lives with AS.
Brenda had this to say:
“Both boys are completely different. They both handle and push through differently. I believe that age plays a huge factor. Miguel definitely understands the condition a lot more, therefore he is more active and continues to keep the disease from flaring. Paul has a little more difficulty. He is learning to read his body. Learning slow.”
However, Brenda continues to encourage them however they choose to spend their time and energy.
“I do tell my sons that they can do whatever they want in life. Just because they have an autoimmune disease does not mean that life is over. It just means that you have to find a way around it.”
Advice to parents
Brenda’s first bit of advice to the parents of children with chronic illness is to get involved with local support groups and take an active role in their treatment.
“Get online and reach out. If you have a local arthritis foundation, contact them. If there are groups online, join them. I went on social media and started adding everything that was RA or AS related. Learn about the disease. Don’t be afraid to ask questions to the doctors or therapists. Whether you’re an adult living with a rheumatic disease, or your children are the ones battling. Reach out. Talk to others.”
Brenda also wants parents to know that even though their child(ren) might have a chronic illness, they shouldn’t treat them any differently.
“There is nothing wrong with your child. Just because there was a diagnosis, doesn’t mean life should change. Keep it the same. Kids grow up, and they will still need to learn to manage the disease. So, it's good for them to learn now and make it a part of their daily life. Reach out to other parents and have support. It's not easy, as a mom of 2 boys living with it, I wanted to take over the chores and work. I realized that it was a mistake. If I live with it, they have to learn to live with it as well. It's not going to go away any time soon.”
I want to thank Brenda, Miguel, and Paul Zamora for sharing their experiences and insights into living and parenting with chronic arthritis. Brenda can be found on Twitter at @BZamora321 and is available to anyone who wants more information about parenting children with AS.
Do you use the word disability to describe your AS?