My autoimmune disease asks a lot of my son.
I once admitted to a physical therapist that when my pain was really bad, I didn’t do my stretches. I just couldn’t make myself get down on the floor and stretch, because when the pain was intense, I knew I would have a hard time getting back up off the floor.
“Just as long as you do something. Don’t give into it completely and stay in bed all day,” he said.
“I have a young son at home. It’s not even an option,” I told him.
I was lucky. The process of becoming a parent was easy for me. I got pregnant soon after we started trying. I felt healthy and strong, never hindered by morning sickness. I didn’t alter my activities at all, and in fact, continued to teach my fourth grade class until two days before my son was born. We got to the hospital at about 3:30 p.m., and at 9:48 p.m., our son, Ryan, made his entrance into this world.
My body was a wonder. A literal powerhouse that had successfully sheltered and grown a new life. My body had done everything it was supposed to do. But that was then.
Now, this same body is betraying me and attacking itself. When my son was 3 years old, I was diagnosed with an autoimmune disease called Undifferentiated Connective Tissue Disease.
Now I deal with daily pain and fatigue in my legs. There is no cure. There are only medications to try and manage the symptoms.
Like most autoimmune diseases, mine is unpredictable. Pain one day doesn’t necessarily translate into pain the next day. Likewise, a day that starts off well can change in a moment. I never really know when it will feel as if a vice is squeezing my left leg, or when it will feel as if an elephant has sat down on my legs or when it will feel as if I am being slowed down by invisible shackles that are wrapped around my legs. I just know that, at some point, it will happen.
But this also means that my greatest blessing, my 9-year-old son, is also my biggest complication. I don’t rest like I should in my attempt to be an actively engaged mother. Almost daily, we play together outside—handball, hide-and-seek and two-player versions of kickball and basketball. I sit on our living room floor to help my son with large puzzles. We go on “dates” to the Natural History Museum, the Aquarium of the Pacific the Los Angeles County Museum of Art.
I do these things even though I hurt. Even though these activities intensify my pain. I do these things while I can, because no one really knows the course this disease will take over time.
The other day at the playground, I watched my son run over to the swings and climb on. I sat on a bench and watched as he pumped his legs back and forth, getting higher and higher. When he tired, I watched his legs stop pumping, I watched his swinging slow down, I watched him stretch his legs out and jump off. All without any help from me.
He moved onto the jungle gym, but I continued staring at the swings. I looked back and forth between the baby swing and the swing my son had just used. And it was those swings that really brought home for me the ways in which my support of Ryan has changed. Ryan used to swing on those same baby swings, gently being pushed back and forth. He got older, and loved to go higher, to be pushed “to the moon,” but still within the confines and relative security of that baby swing. When he got too big for those swings, we transitioned to the “big kid” swings, but even then he still needed me to lift him up and sit him down, to push him, to teach him how to pump his legs so he could soar higher.
Now, I support my son in different ways. I support his personality, his likes, his curiosities. I sit and watch YouTube videos of Blake Griffin’s top 10 dunks because my son likes basketball, especially the Los Angeles Clippers. My son and I read books about sharks because he’s interested in these creatures that lived during the time of dinosaurs.
I do these things not because I necessarily want to, but because he does. And I support him.
I know that my son’s increasing independence is a good thing; it’s age-appropriate. But, what does it mean that at the same time, I’m increasingly becoming dependent on him and his support of me?
The older Ryan gets, the more he understands that I have physical limitations. He knows that my legs are often hurting, that my legs aren’t as strong as they used to be and that there are certain things I cannot do—like take the 15-minute walk to the nearby basketball court.
Each week, my son and I go grocery shopping. He doesn’t fit in the top spot of the cart anymore. Now, he’s often pushing the cart for me. Putting the avocados in the plastic bag. Reaching for the can of soup that is on a bottom shelf. He might not know it, but he’s supporting me as I once supported him. He’s doing things for me, making things easier for me.
No matter how I feel, no matter what I can or cannot do, I will always be Ryan’s mother. That doesn’t change. The way I mother, the activities in which I participate, may change though.
And I have to give myself permission to know that it’s okay. Taking care of myself is sometimes in conflict with taking care of my son. Like most mothers, I put my child first. And so I push, do too much and play when I should rest.
Because I want to. Because I feel I should be able to. Because I feel my son deserves it.
And he does. But he also deserves a mother who doesn’t push herself to tears. A mother who knows that there are many ways to show her son her love. By letting my son see my vulnerability and weakness, I’m hoping that he’s learning life skills involving patience and understanding. I’m hoping that my son will grow up truly understanding that things are not always what they appear to be on the outside. Just because I may look OK on the outside, doesn’t mean I’m feeling OK on the inside.
It’s somewhat funny how watching my son play at the playground can really bring home certain lessons for me. For instance, I’m recognizing that a seesaw doesn’t need to operate in the same way that the scales of justice do. With a seesaw, both sides don’t need to be equal. In fact, when they are, the seesaw isn’t really as much fun. To truly experience a seesaw, one side does get higher than the other, but this allows both parties to participate. You need both people to make the seesaw work.
Earlier in my son’s life, our seesaw was tipped. I was supporting him. Our seesaw is now moving a lot more now; some days he may be supporting me more than others. But all days, we’re riding it together, making it work together, supporting each other so we don’t fall off.