"I like to think the silver lining is that he's more independent and resilient for all the times he had to be on the floor instead of in my arms"
Thought parenting is the toughest job ever? Imagine being a parent while simultaneously battling a chronic illness. Suzie, an engineer, a mom, a wife and a children's book author, shares her take on parenting with Rheumatoid Arthritis.
The Chronicles of Parenting
I will never be the parent who does early morning drop off. I will never be the parent who holds and rocks my baby for hours on end. I will never be the parent who runs around the block or climbs the rock wall at the playground with my child. I will never be the parent who cooks organic, gourmet meals. I will never be the parent who signs my kid for 50 different after-school activities or takes my child to 50 different events in one weekend.
To some of you, the above statements probably make me sound like an awful parent, but I don’t think I am. I am just a parent who has Rheumatoid Arthritis, or RA, so I do things a little different. More on that in a minute. First, with rheumatoid arthritis, my mobility and energy come in peaks and valleys. It’s when I’m in a valley that I can’t do a lot of physical activity, like spring (or, let’s face it, even roll) out bed at the crack of dawn or any of the items stated above. And I’m ok with this – I’ve accepted that RA will affect my day to day life and I’ve adapted as a parent. I know that I can still provide a wonderful life for my child if I listen to my body and pay attention to the peaks and valleys of RA. But I haven’t always been ok with rheumatoid arthritis and how it affects my life.
Choosing marriage and raising a family
For as long as I can remember, I’ve wanted to be a mom. I would play and later daydream, of playing with and raising my kids, perhaps afternoon tea with baking soda and vinegar bubbling drinks with my child (breaking stereotypes of course). When I was diagnosed with RA at age 25 (year 2007), my resolve to have a family was, well, a little bit shaken to say the least. I began to question if I could be the parent I dreamed of being. Instead of having one year between being engaged and getting married, I deferred our wedding date out nearly three years from the proposal date because I didn’t know If I’d have the energy needed to plan the wedding we wanted. I wanted to be sure that I’d be feeling well enough for the event. And in 2009, the medication I was taking for my RA had put me into remission, and I was in a high peak.
This peak, after having lived in such a low valley in 2007, helped me not to just believe but to know that there could be good (or even great!) days, and that anything was possible. My dream to have a child was once again strong, rooted in the optimism of good days ahead. No longer shaken about having a family, I went off birth control pills in 2012 with excitement and hope. But more than a year went by, and I worried why I wasn’t pregnant yet. To make matters worse, bad days had returned - I had flu-like symptoms every time I got my period. Every time it rolled around I’d be knocked on my ass for a whole week.
One thing that is a blessing is that the autoimmune community is full of loving and supportive people, many of whom I have called friends most of my life (and they cover a whole range of autoimmune diseases). And while I wish none of my friends had their diseases, we provide each other much-needed support and insight on the struggles (and triumphs) of living with chronic illness. So “luckily”, I had a friend who recommended I visit her doctor to help me with my menstrual issues, as this doctor had helped my friend and friend’s mother with female and autoimmune issues. I worked with this doctor not only to resolve my menstrual issue but to help with RA issues as well. Long story short, this doctor thought my thyroid was sluggish (my understanding is thyroid issues are common among autoimmune disease patients), and the doctor put me on medication to improve my thyroid. Within a month, I was pregnant (which could be coincidental, but once my periods returned post-mortem, the flu-like symptoms pretty much went away).
Dealing with Pregnancy
Pregnancy (minus the wholly expected morning sickness during the first trimester) was good to me. When pregnant, I chose to stop taking my RA prescription to avoid complications with the pregnancy. Despite this, my RA numbers were at an all-time low (since my diagnosis). Pregnancy had facilitated remission for me. I know remission doesn’t always happen during pregnancy, but I’m grateful that it did happen for me. It was a wonderful time in my life. I gave birth to a beautiful and healthy baby boy in 2014. Life was good, but soon after, I found my elbow joints locking up on me as I breast-feed. Remission timelines vary for every patient, but I knew that for me remission was over, and back on to stronger medications I went. This also meant I had to concede that I wouldn’t be able to hold and rock my baby boy for hours on ends like other mothers.
But I adapted. Instead of holding him, I’d lie next to him on the floor while he stared up at his play mobile. I’d sit next to him as he sat rocking in an automated swing (which, by the way, was one of the best baby products I ever invested in!). I switched to pumping milk and giving him bottles with formula and breast milk mixed, which gave him more time with dad, strengthening their bond; and I got more rest to give my son the best version of myself. Wanting to be a great parent has helped me to listen to my body, to work with the peaks and the valleys. I work to not push too hard through the valleys because that causes them to last longer and makes it harder. I’ve adapted.
And while I’ve adapted as an RA mom, my son has adapted too. I like to think the silver lining is that he’s more independent and resilient for all the times he had to be on the floor instead of in my arms (surely that’s why he started crawling, right!?!). I also think a positive is that my son and my husband/his dad are closer than most dads and sons; again, the silver lining. Sure, it stings when dad is preferred over mom, and the mom guilt of not being the primary/preferred parent is ridiculously intense, but I wouldn’t trade their bond or my high peak for anything.
So yeah, I’ll never be the parent who does the early morning drop off; I’m too tired and achy to get out of bed before 8 am. I will never make the organic, gourmet meals; I’ve not got the energy to cook hours on end. I will never be the parent who runs or climbs with my child; my joints hurt too much. I may never be the parent who signs my child up for everything; I’m too tired to run my child all over the place. While I may never be able to do all these things every day, I’ve learned that if I listen to my body and work with the peaks and valleys, I can do these things when I am feeling good and in a peak. And I won’t let myself feel guilty when I can’t do these things – I stay focused on the times when I can do them and try to be patient for when I am feeling better.
I will figure out a way to make sure my child makes it to school on time (hello neighborhood carpool!). I will make sure he gets to participate in what he wants (thank you in-school extracurriculars). I will make sure he is feed (some of the best parenting advice I got is that it’s okay if you’re child eats a PB&J sandwich for dinner; they’ll think it’s a great treat and most important, they’re still being fed!). I will figure out a way to hold him and play with him—it might just be a little creative and different from how the non-autoimmune disease parents do it. I will never be the primary parent, but I am still the parent who provides continuous care, support, and love for my child. I just provide it in my own, RA parent kind of, way.
Connect with Suzie at:
Facebook - https://www.facebook.com/MomeeZeePHX/
Twitter - https://twitter.com/MomeeZee