Going off routine: the reality that is parenting with an autoimmune disease.

Being a parent is hard work. Being a parent with an autoimmune disease can feel like tackling an impossible job. So I’m going to be completely honest with you and share what it’s actually like sometimes.

Managing several viruses and infections in the first year of parenthood

They say you get sick a lot in the first two years of a child’s life. I’m not sure what will happen when our son joins a daycare program, but I do know it’s been a rough year for my health.

The first year postpartum has been SO hard on my body. I’ve had 3 UTIs, several kidney stones, a dislocated knee, and now I’ve been prescribed another round of antibiotics. This will be the third time since giving birth to my son that I have been on antibiotics, making it a total of 7 times in ONE year. I spent the past summer fighting off recurring cold viruses. Despite being regimented with my diet, it took me 3 months to fully recover.

With any of these illnesses, you obviously need sleep to recover. A baby that is in some stage of sleep regression doesn’t help. I’m not sure that I believe sleep regression is just once at 4 months, 8 months, and then 11 months. You never know what baby you’ll get. They’re all different. And sleep varies.

Cleaning is the last thing I prioritize these days. I work a full-time job with two days in the office and three days at home. Sometimes I’m better about cleaning, but mostly I just focus on what needs to be done: cooking, bathing, caring for the pets, or doing laundry. Some days I only accomplish two of those things in addition to my job. Some days that is all I can manage as a working mom with Sjögren’s.

Dealing with sleep regression and deprivation when you already have daily fatigue

Our son has never been a sleeper. And by ‘sleeper,’ I mean a baby who sleeps through the night every night. When he was 3 months old, we were able to get 5-6 hours of uninterrupted sleep at most. By 6 months, he weighed 18 lbs. We just couldn’t feed him enough because of how much he was growing. Night feedings were a regular occurrence for us.

At 8 months, he started crawling and had 6 teeth come in at once, both of which affected his sleep. Our pediatrician joked he’s a linebacker. I think he just doesn’t know how to slow down once he gets started.

My husband is the real MVP this first year because he has gotten up every night and fed our son. Sometimes the sleep deprivation makes him unapologetically an asshole, but he knows how much I need the rest and he stands by me as a partner ready to do the hard work.

After recovering sometime in the fourth trimester, I was able to help more with night and early morning feeds. The struggle with sleep deprivation is real, even if you don’t suffer from daily fatigue. I suspect my fatigue only makes me feel it more intensely. And so much that I accidentally scraped the side of our car trying to back up into our narrow garage space one morning.

I’d also be lying if I didn’t admit that I’d sleep during both of my son’s naps. If I found myself in dire need of a shower, I’d put him in the bouncer near me and play ‘peek a boo’ from behind the curtain while I hurried.

I’ve had mornings, too, where I’ve admittedly overslept because of my fatigue or an illness. My son either plays quietly in his crib or he falls back asleep until I am awake to get him. I sometimes feel guilty about not being able to keep his morning routine the same every day, but his naps are regular and he goes to bed at the same time every night.

Being ill when your child is also ill and co-sleeping

Our first flight with our son to Chicago resulted in one of the worst colds we’ve ever had and we shared it as a family. We co-slept with him during our last night in town — if we had co-slept before, I don’t remember it. He just couldn’t get comfortable in the Pack N’ Play. We tried alternating positions with him until he finally fell asleep on my husband’s chest. My poor husband sat up all night with him in our hotel bed, eventually falling asleep in that position.

Our flight back only made the congestion worse and it took us awhile to recover. Our son wasn’t eating or sleeping much, so I took him to see his pediatrician. She recommended this helpful tip: propping him up on his boppy in the crib with a towel rolled under his legs to help him sleep upright. It worked and he let us sleep through the night.

Being ill when your child is not ill (and moving up naptime)

This weekend I was writhing in pain trying to pee and my son knew something was up because he kept crawling after me to the bathroom and trying to stand beside me. As I write this, I’m amazed we even made it out the door to the hospital. I know we couldn’t have done it without my husband being there.

When I dislocated my knee, I was trying to get up from a chair so I could pick up my son from his high chair. I’m amazed I didn’t pass out. I did fall to the floor while my son watched. The knee stopped locking and eventually went back into position on its own. The swelling was awful. I had to sit on the couch with frozen vegetables on my knee and watch my son play on the floor while I waited for his dad to come home from golfing.

When I had my first migraine this year, it was debilitating. My son was sitting next to me on the bathroom floor watching me vomit into the toilet. I pulled the curtains to darken the living room and put a blanket and pillows on the floor so we could cuddle and play. He seemed to know something was off and willingly lied down next to me on the floor. It only entertained him for so long before I had to put him in his crib so I could rest. He knew it wasn’t quite yet naptime, but he adjusted.

My best advice for autoimmune moms: Adjust and adapt as needed.

We did not get a sleeper, but we have a very adaptable and easygoing child. Perhaps he is the baby I needed as a parent. He seems to handle my chronic illness with grace… or at least some sense of patience I didn’t know an infant could possess. I learn so much by caring for my son.

I know I wouldn’t have survived the first year as a single parent. Together, we are stronger. We have learned how to adapt and meet our son’s needs while doing our best to not forget about our own. Parenthood is hard work, but we also love it.

And let’s be real: I’m so grateful to have a partner I can depend on for some sleep.

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