Mothering and Lupus

mothering and lupus
I thought that if I didn’t make a big deal of it, Tyler and Kylie wouldn’t be scared. It mostly worked.
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My heart stopped one day at the park. Or maybe it broke. My daughter Kylie and I were hanging with friends, playing on the slide, digging in the sandbox and generally having a lovely afternoon. Kylie moved onto the swing set after that and I was pushing her over and over again, higher and higher each time as she laughed out loud and pumped her chubby little legs. Eventually it was time to start the short walk home so I stopped to lift her out of that baby swing.

I couldn’t do it.  Literally, I did not have the strength to lift Kylie up.

I had been struggling recently, feeling weak and having numbness on one side of my body and then the other. I had been doing a little physical therapy for that but had just started a new job that required a lot of traveling, so I kind of dropped the ball on therapy. Doctors didn’t know what was wrong so I just did what I do; I pushed on. Some might say that I was burying my head in the sand or shoving the issue under the rug and maybe I was. Maybe I was hiding from it all.

After having to ask my neighbor to lift my daughter, I couldn’t really do that anymore. I was shocked, my brain froze. What was I supposed to do now? I felt scared and maybe embarrassed. How could my body fail me so and, more importantly, how could I fail Kylie? In an odd juxtaposition, I was also feeling grateful. So grateful that I was with my friends who could lift her when I couldn’t and were there to walk with us home and normalize the situation.

Of course, it wasn’t normal and I had to face that. The next morning found me trying to get up the stairs to the kitchen. By the last five stairs I was on my hands and knees, crawling up one by one. My body was on fire, and I was vacillating between needing to cry and rage and being stoic; I didn’t want to tell my husband. To say it out loud made it true. But he was in the kitchen and watched me fall onto the couch when I reached that top stair. The decision about what to do was no longer in my hands.

It meant going to doctor upon doctor each time leaving with more questions, no answers. Meanwhile I got worse. I crawled the stairs, I sat down to shower. I couldn’t run and play “tickle monster” with my son Tyler. I couldn’t walk around bouncing Kylie on my hip when she needed soothing. Hell, in the end I couldn’t hold my toothbrush or a knife and fork and struggled desperately to hold my arms up long enough to wash my hair.

Eventually I was diagnosed with lupus. Was this going to be my life?

I felt scared, overwhelmed and guilty. Scared that no one knew what I had and overwhelmed by the sheer magnitude of my body’s breakdown. Guilty that I wasn’t able to do everything myself; that I couldn’t be the active mom on the floor rolling around laughing with her kids. I also felt guilty about my husband. This is not what he had signed up for. But none of us had a choice in this. It is what it is.

I spent a week in each of the three local hospitals. When I went home I had a physical therapist come and painstakingly teach me to walk again. I learned to adapt a bit and compensate for what I couldn’t do.  I had a rolling computer chair so I had my son push me around on that in the kitchen. He loved to help and thought of it as a new game. I tried to spend some one on one time with each kid playing with them; reading to them and just snuggling up and loving them the best I could.

Along the way, I tried to hide the gut-wrenching sadness I felt; the “am I more of a burden than I’m worth” feelings. Disease feels singular and lonely. You can’t imagine that anyone else has ever felt these feelings or could possibly understand what I was going through. So, I was quiet and silently struggled to stand, to walk, to wash my hair and I even had to get dressed in short spurts of energy.

For me, it’s the unpredictability overall that is the worst. I can’t commit to lead a field trip for school; or help at a school fundraiser. I struggle through playdates and birthday parties. I have immense skill at looking and saying that everything is great when my legs are struggling to keep me up!  Crazy shit.

When I wasn’t trying to hide my illness I also tried to adapt to it. I pulled a stool over to the stove so I could sit while I cooked.  I had my son roll me around on a computer chair; “zoom zooming” so he’d think it was just a game. I’d climb in the bath with them, snuggling under the bubbles so I didn’t have to lean over the deep tub to reach them. Basically, I’d make my challenges a normal part of life in a way. I thought that if I didn’t make a big deal of it, Tyler and Kylie wouldn’t be scared. It mostly worked.

There was one day I remember when I was in the hospital and the kids visited me. They ran in, their eyes huge in their little faces; and I braced for their enthusiastic hug. But they suddenly stopped short of the bed and when asked why, Tyler said “We don’t want to hurt you. I know it hurts so much sometimes when I’m on your lap.”  I guess my wincing was a bit less hidden than I had imagined. I knew then I would have to talk to them about lupus. Later. Then I said “Are you kidding, nothing makes me feel better than you two snuggled up to me. Nothing.” With that, they went back to fighting over who could climb up and who could play with the bed settings—folding me up and down with a touch of the button.

Fears forgotten, they were super excited to leave when it was time. Not because they were scared of the hospital as much as because they were going to spend the night at a friend’s house on a school night. And really, what could beat that!

I was so determined not to let my illness impact my children’s childhood. Obviously, it did. It infiltrated every aspect of my family. It’s hard to explain what it takes to summon up the physical and emotional energy needed for parenting when you have to navigate unpredictable, often scary symptoms and the anxiety of an uncertain future and drastically varying energy levels. But come hell or high water, I made it to the soccer games; to ballet recitals, to back to school nights and PTA meetings. That determination, that fake-it-till-you-make-it, isn’t always the right tack or even possible, but it sure beats the alternative. ​

​And you better believe I found ways to play with them. Sometimes rolling on the floor, sometimes playing tickle monster, sometimes just quietly on the bed.

And many times back at that park.


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