Just Love Them: Parenting With Chronic Illness

He whistled as he walked away. The doctor had just changed my life, crushing me with his diagnosis. Yet, as he left the office and moved down the hallway, he whistled a tune.

 

My diagnosis came as no surprise to me. I could barely move, my joints were so swollen and stiff. I couldn’t open my mouth more than two fingers’ width, and my head was basically frozen on my neck because it hurt so much to move it from side to side. I’d done my research, and the doctor confirmed it. I had Rheumatoid Arthritis: a chronic, progressive, auto-immune disease.

 

My diagnosis came in 2004 at the age of 26. RA causes your body to attack itself, making the joints swell and stiffen and causing great pain. There is no cure (yet), and the disease progresses differently in each person, so my future health is uncertain.

 

 

We were trying for kids after being married for 3 years, but it was immediately apparent this would have to wait until I could get my disease under control. Still, I worried about the future. Would I be able to have kids? Would I be able to take care of them.

 

Luckily I found a treatment regimen that worked quickly for me, and only a little more than a year later, my daughter arrived. We now have three kids, and the intervening years were a cycle of extreme pain and sweet relief, as I cycled on and off treatment in order to conceive and carry each of them.

 

I remember sobbing one night as I tried to lift my infant daughter, who weighed a mere 7 pounds, and being nearly unable to hold her because the pain in my wrists was too great. At the time I was nursing and off treatment.  

 

 

The answer came to me like a voice in my head and warmth in my heart.

 

I’m going to be honest. Parenting with RA hasn’t been easy. Many times, I haven’t been able to get down on the floor and goof around with my kids like other moms do. I’ve had to miss out on events because I was just too tired to go. Lots of times I’ve cried out in pain when one of my children was too rough in their play or I tried to do too much and paid for it the next day.  

 

I can’t be all I want to be. So, I just love them.

 

I tell them I love them. I tuck them in bed. We talk. I ask them questions about their day. I go to the events I can. When I’m in good health (as I am now), I do all I can with and for them. I pray for them, I teach them, and I discipline them. We go to movies and special events, and we create special memories.  I show them I love them in as many ways as I can think of. Most importantly, my disease isn’t a secret. My children know I struggle, and that it’s RA that keeps me from doing everything I want, not my desire.

 

Maybe you’re like me and struggle with something that keeps you from being the parent you thought you’d be. Maybe you struggle from depression, anxiety, or other mental health issues. Or, maybe you have a disability that keeps you from doing all the fun things you’d love to do, if you only you could.

Maybe you worry you’re a terrible mom, like I often do.

I’m here to be that voice in your head when you doubt yourself, when you wonder how you can ever be a good mom to them. When some days, your struggles overwhelm you.

 

 

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