Parents' Perspective (Part 2)

Recently I had the opportunity to talk with my parents about their experience having a child with rheumatoid arthritis (RA). I was diagnosed at a very young age (about 2 years old) with an aggressive form of the disease. Now 36 years later, they reflected on what it was like as a parent to navigate the challenges of RA.

How was I both different and the same as other children?

You were like any other kid in that you liked to play and be outside. You liked to do all the things kids do.

But there was stuff you couldn’t do, like walking on uneven ground or climbing on the swing set. You got tired more easily. You needed more rest. But you still did Girl Scouts and learned piano.

We determined that you were going to have a normal life like anyone else. So we took you everywhere, even if we had to carry you. We took you hiking and camping. And parks and all. When you were little I [mother] had you in a stroller and your brother strapped to my back.  We had to carry you or put you in a stroller because it was hard for you to walk long distances. You were expected to do well in school and do your chores. You were in plays and concerts. You loved to sing.

How were other kids?

I think your friends just treated you like anyone else. I don’t know about other kids. I know when you got to be a teenager there was stuff you couldn’t do. But you still went to sleepovers and parties. You didn’t take driver’s ed.

What happened when my RA flared?

Your first major flare was when you were 10. When you woke up in the morning, you would cry because you were in so much pain. You couldn’t walk to the bathroom so we had to carry you.

And the doctors tried all these different drugs to find you some relief. We got you the buggy [large stroller that folded up], but you didn’t take it to school, only out with us. We really used it when we took a trip over Thanksgiving that year.

We took you up to Rochester (New York) for the first time because they had more children patients with rheumatoid arthritis. We were trying to keep your joints moving and the inflammation down. The new drugs were able to eventually calm the flare down.

The doctors wanted to try methotrexate, but we were really scared of that [so we didn’t]. It’s a balancing act because of the effects on a growing child, the side effects, and then having treatment options for the future, plus the damage the disease is doing. And you don’t know what’s going to work because you needed to be on it for 4-6 months to see if it kicks in. It was hard.

What was the process for seeing that I needed new hips and knees?

You were in a lot of pain and you couldn’t walk. And you would wake up in the morning and cry. You were so stiff. You had no cartilage, it was just bone on bone.

We had talked with the doctor about it before and they had said they couldn’t do anything until the growth plates closed. We wanted you to be able to go to college. You were really sad all of the time because you were in so much pain.

When you were 16 the growth plates had closed. So we talked to you about it and you wanted to [have the hip and knee replacements]. Before the surgeon would even do it, he had to talk with you and make sure you were in the frame of mind [to fight and work hard].

What was your experience with the surgery and recovery?

The surgeries were nerve wracking, waiting for you to come out. We rented an apartment in Rochester when you had your hips done. I [mother] remember your second hip surgery [a few days later], I was so nervous that I was pacing all over the place. Dad sent me outside and I was walking up and down the street.

The recovery was really hard, because we had to make sure you did stuff that you didn’t want to do. And not give up. Lot of PT. Lot of hard work. The doctors don’t really tell you how hard the recovery is. Your case was hard and they are not there for the everyday hard work you have to do. They didn’t see all the hard work, they just saw the results.

What was your experience of my going to college and then moving out to live independently?

The first couple weeks of college was not fun [explained my father]. It was pretty scary. [I broke my leg during the first week.] On top of the special concerns about your ability to adapt, you had to deal with a broken leg. Life hadn’t been fair to you to begin with, then to add that on top!

We raised you to be independent and have your own life, which you have done beautifully. But it was still hard when you moved away. We are very proud of you!