"I'm sorry, honey, not today. Mommy doesn't feel well." I say this way more often than I'd like to.
I have a 5-year-old daughter, but I also have systemic lupus erythematosus (an autoimmune disease that causes the immune system to inappropriately attack tissues in various parts of the body), fibromyalgia, osteoarthritis in both knees, arthritis in one hip, spinal stenosis, and a herniated disc in my lower back. I've also been blessed with depression, anxiety, and bipolar disorder. My medical chart is as thick as a phone book and I'm only 43 years old. I found out I had lupus and fibromyalgia in early 2010, when I was 37. My doctors told me if I planned on having children, it would be considered a high-risk pregnancy, and if I was going to get pregnant, I needed to start trying soon. My husband and I had an important decision to make.
I never thought I'd have a child or even want to be a mom, but being pregnant changed that. I'd suffered a loss the year prior; it was an unplanned pregnancy. My husband and I didn't discuss it, but it ate away at me, and I spent a lot of time wondering what if. Even at only 10 weeks, when I had my miscarriage, I'd felt so connected to being a mom. Being faced with having to make a decision about having children finally made us talk about my miscarriage — how it'd changed me, and how I now wanted to have a child. My husband said he'd felt the same way, but because I'd never expressed an interest in parenting, he didn't bring it up. We agreed we wanted to be parents, but we'd need to further research my conditions and how they could affect a pregnancy.
I'd only been on my medications for lupus and fibromyalgia for six months, but I was feeling better and hoping to continue on that path. I found a gynecologist/obstetrician who specializes in high-risk pregnancies as well as fetal medicine. We discussed my medical history and whether it was even feasible for me to try to get pregnant. She suggested I stay on my meds until I got pregnant but that as soon as I found out I was pregnant, I would need to discontinue them. My pregnancy would need to be closely monitored to make sure it was progressing well. (Some people experience lessened lupus and fibromyalgia symptoms during pregnancy, so maybe there was an upside to this having-a-baby thing.) Our first month of trying, I got pregnant and went off my medications immediately.
I'm not going to lie: My pregnancy sucked. I hated being pregnant, and my health suffered. At one point, I had to have a stent put in one of my kidneys because it wasn't functioning well. I had awful sciatica and numbness in my legs. I suffered from severe morning sickness the entire time, there was no glow on my face, and, after going into preterm labor at six months (thankfully it was able to be stopped), I was put on bed rest.
Being able to relax in bed sounded great at first, but it was incredibly boring and frustrating. I was constantly at the doctor and had weekly NST (fetal non-stress test) appointments as well as weekly ultrasounds. After every NST, my doctor would say the fetal heart rate was too high and send me to the hospital. I was there so often all the nurses knew me by name. Considering my declining health, the baby's heart rate being consistently too high, my pain, and the fact she was footling breech, my doctor and I decided to schedule a medically necessary C-section at 37 weeks. I was 38 when my daughter was born, in May 2011.
One of the hardest things about having lupus and fibromyalgia is never knowing from one day to the next how I'm going to feel. There are medications to help with my conditions, but they don't cure the diseases. My list of medications rivals that of any pharmacy. A flare-up of lupus can last a couple of days, weeks, or months without a clear way to tell when or how bad it will be. My most recent lupus flare lasted almost six months, and I was in and out of the hospital and in bed for days at a time. Both diseases can cause a laundry list of symptoms, but for me they mostly cause pain, fatigue, loss of mobility, headaches, nausea and vomiting, clouded thinking, and memory loss. Lupus has also affected one of my kidneys and caused hair loss, sensitivity to the sun, a rash on my skin, and patches of dry skin. My pain from both fibro and my back never truly goes away.
How does all this affect me as a parent? A lot. It means I feel like I'm letting down my daughter every time I have to tell her we can't do something or I can't get out of bed. It means that I have to try to be more creative in what we can do. I push myself to exhaustion most days, at times counting down the hours and minutes until bedtime. It means that I not only have to look my shortcomings in the face — we've had sandwiches or takeout more often than I'd like to admit on the days I simply can't cook or can't deal with cleaning up the kitchen — but watch them flicker on my daughter's face as well.
I've had to learn to not beat myself up if there are toys left out, if the laundry didn't get folded, or a glass of water hasn't made it to the sink. Does having chronic illnesses make someone a bad parent? I don't think it so. Does it make it more difficult to be a parent? Absolutely.
I've had people tell me I shouldn't have had a child because I'm not healthy. It's made me question if I would have chosen to be a parent had I known how hard it was going to be. I can't imagine my life without her now; I never question that, but I know having a sick mom isn't an ideal situation for a young child. My limitations, however, caused her to be more independent, flexible, empathetic, considerate, and creative. I realize I'm blessed to have such a low-key and easygoing child. She's not a typical 5-year-old.
I'm often told how well behaved she is, and I think it's in part because of all the time we spend together. There are days she takes care of me more than I do her. She's been able to dress herself since before she was 3. One of her favorite ways to help me is to have movie days, where we stay in bed watching movies and playing games. She's able to entertain herself when all I can do is lie on the couch. She knows on my bad days to bring her dolls into my room so we can play together in bed. She's rubbed my back for me when it hurts to move. She's gotten the trash can for me to throw up in. She's made her own lunch on the days I'm in too much pain. She's had to sit through so many doctor's appointments, whispering and sitting still, sometimes for hours. She cleans up after herself much better than my husband ever does.
It's difficult to plan ahead since I never know how I'm going to feel from day to day. Last week, I told her we'd go to the beach but woke up feeling terrible and was barely able to get out of bed. She was disappointed and so was I, but we tried to make the best of it. We thought of ways to bring the beach to us.
We had a picnic lunch and pretended to be at the beach. We drew pictures of ourselves swimming and lying in the sun, and read books where the characters were at the beach. We got out the kinetic sand and built tiny sandcastles, ending the day with a movie that took place at the beach. Was it the same as going to the real beach? No, of course not, but she's learned to be flexible. I promised we'd go to the beach soon, when I'm having a good day and the weather is great.
I will keep my promise to her.
On the days I am feeling well, we try to do as much as possible. Those are the days we go to the zoo or the park to play. We go on playdates so she can see her friends, go to lunch, and go shopping at the mall. We visit the library and check out as many books as we can. We'll head to the aquarium to see the manatees and sea turtles. We both love to bake and make a mess in the kitchen. I like being able to make her favorite dinner or go swimming in the pool. I love watching her act like a 5-year-old instead of being worried about how I'm feeling.
I want her to be able to forget that she has a sick mom.
After a long, busy day, my guilt washes away for a brief moment when she smiles, gives me a great big hug, and tells me how much she loves me. The moment, however, is always brief and quickly followed by my bright, brave daughter starting a sentence with "I know you might not feel well enough, but can we…"
As often as it can be, my answer is yes.