The Emotional Ride of a Young Mother on Dialysis

By Bell Maddux

A few months ago, I sat at a desk, opposite my doctor in his private office as we spent the better part of an hour discussing my options for dialysis. He felt strongly that in-home peritoneal dialysis would be the least invasive and most effective treatment for me and told me what would be required and how long it would take to get started. I needed to have a dedicated, sterile place at home for the dialysis chair and to store the towers of boxes of solution. “Do you have a space for that?” he asked. My mind played a short montage of scenes from my home from the previous few days—both kids jumping on the bed while I napped. My son dive-bombing into my ribs on the couch. My daughter’s relentless negotiation tactics to use my phone while I’m in the bathroom. Or the midnight machine-gun fire, mom-mom-mom-mom-mom-mom …

“What can I expect?” I asked him as the highlight reel in my mind faded. Will I be in pain? Will I be exhausted? Will I feel better than I feel now? Perhaps unlike his typical patient, I have two tiny people counting on me, and I needed to be able to continue on as I’d been doing all along. But I didn’t get a clear answer and realize now that is because the answer was all of the above. Months in, there are some days when I feel great, some when I feel horrible. At times I can barely get out of bed, but other times I can do “Billy Beez.” This would apply no matter what type of dialysis I chose, but since my kids are crazy, I chose in-center hemodialysis. If I’m being honest, it’s the only time to myself that I get.

“The only limitations in my ability to mother my children are the limitations I put on myself.”

As winter passed, I lamented my lack of energy and inability to take the kids sleigh riding, or out for snowball fights and making snow angels. Once, I tasked my husband with taking my daughter to an ice-skating birthday party, and the guilt only turned into relief when they returned home without tears or scraped knees. With my toddler son, I don’t always have the strength to do bedtime rituals. It feels like my inadequacies and limitations are so overt that the tinge of remorse for shortchanging my kids of the childhood they genuinely deserve punctuates just about every waking thought. I consider myself extremely fortunate since I still work full time and have a job that allows me to work from home on my dialysis days. But I sort of don’t have a choice. I have to keep my job to keep my health insurance. But fitting the dialysis schedule into play dates, gymnastics, parent/teacher conferences, car repairs, and a 40-hour work week is no small feat of magic. I do have help, but it’s still a lot of work.

One night, my unfailingly astute 7-year-old daughter asked me, “Once you get a new kidney and don’t have to go for treatments, will you be able to stay home on Tuesdays and Thursdays, still?” The answer was probably not, which was a disappointment for her.

“…all mothers are so freaking bad-ass. Regardless of whether our challenge is dialysis or something else, we find a way to make it all happen. It’s just what we do.”

The only limitations in my ability to mother my children are the limitations I put on myself. In the pre-dawn waking hours, as the fog of dreams comes into focus and I start to realize which day it is, my first thought is always I can’t do this. And sometimes, before my eyes even open, it’s impossible for me to fathom how and where I can summon the strength just to stand up. Then, 10 or 15 minutes later, as I cross into that state of full wakefulness, I say out loud OK, I can do it before I swing my feet to the floor. Teeth must get brushed, lunch has to get packed, diapers have to be changed, and breakfast has to be made. My daughter’s hair is not going to brush itself, right?And it dawned on me, she’s probably happy I’m on dialysis because this is the most I’ve been home—ever. In previous winters, when I wasn’t on dialysis, I didn’t always take them sleigh riding, but we did other things like we did this last winter. And at times, I may have to sit on a stool to cook their dinner, but even if I don’t cook, they still eat. We still read stories, play ball in the yard and have movie night.

Being a mother is hard, no matter how you slice it. As I told an expecting friend, the highs of motherhood are so high, and the lows are so low. And being a mother on dialysis is hard too. But all mothers are so freaking bad-ass. Regardless of whether our challenge is dialysis or something else, we find a way to make it all happen. It’s just what we do. And, early in the morning, when I allow myself to spend time in that pre-awake state of self-doubt, I know I can’t stay there. It’s not a mantra, or even positive thinking, it’s a reminder: Mama’s got this.

Bell Maddux is a full time Digital Producer in the Ad world of New York City and she lives with her husband and two children in New York’s beautiful Hudson Valley where she was born and raised. While most of her free time is spent exploring local shops, events, and food spots with her family and friends, her absolute favorite thing to do is sit alone on a busy city block with her camera.

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