I fell victim to it again. JA is a sneaky bastard that way. It lets you think you’ve gotten a handle on it, that you’ve controlled it with all of those caustic medications and nice warm baths and then WHAM! it knocks you on your ass again. This past week has been nothing but a reminder that Ryker has this disease and no matter how hard we try, it’s not going away. Most days I can pummel through and stare it down. I can put on my brave face because he needs me to fight it with him; but not today. Today I am pissed. Today I am consumed by these feelings of complete helplessness. Today I play the blame game and the guilt trip — something I did caused this, I should be doing more to help him feel better, I shouldn’t have let him play soccer, I need to take him to therapy, and on and on and on. When you’re a mom you worry about your kids, when you’re a mom of a kid with a chronic illness the worry consumes you. It dictates every action and decision. It’s exhausting. And yet he has it worse than I do. He is being betrayed by his young little 4 year old body every day. WHY?? Why does this sweet boy who prays to Jesus, adores his brother, and belts out country songs have to deal with something so life-altering. Most days I can trust God’s greater plan. Most days I can pummel through and stare it down; but not today.
I went ahead and titled this post ‘Pet Peeve #1’ because, if I’m being honest, I know I have WAY more than just 1 pet peeve, and therefore should exercise some titling forethought. So… right. What was my pet peeve again? Oh yeah! The very well-known and ill-fated phrase
“well he doesn’t look sick”.
For anyone with a chronic illness, especially of the autoimmune variety, this phrase is all too familiar. It can come in many forms, but the basic message is the same:
“He doesn’t have a bunch of tubes coming out of him or some type of severe physical malformation, so his disease must not be THAT serious. You are being dramatic.”
I know, I know. Not everyone means it that way when they say it; but, as a mom who has to face down my son’s illness day in and day out, I’m a little sensitive to it being belittled. The fact is, no, he doesn’t always look like he’s having that much difficulty. When you see him out on the playground, playing with the other kids, running and jumping, and having a grand ol’ time, he looks perfectly normal. What you don’t see, is that we’ve only actually been at that playground for 15 minutes when he says he’s tired and wants to go home. What you don’t see, is when we get home from that playground he will be too stiff to walk into the house on his own. What you don’t see, is the three hour nap his body has to take to make up for that 15 minutes of running and jumping.
So for all intent and purposes, you’re right. He doesn’t look sick for the small portion of time that you saw him, and most of the time, I know that your words aren’t meant to be hurtful; but, just as a general recommendation, maybe consider taking that phrase out of your vocabulary. We might avoid some unexpected mommy breakdowns at the playground that way.
Here is a post I wrote about a month after Ryker was first diagnosed with JA. A year and a half later, it still holds true….
The “Daddy’s Home” Phenomenon
If you are a mom, especially a stay-at-home one, you know exactly what I’m talking about. All day, one or more of your kids has been a complete terror and you are at your wits end. You’ve given your husband a play-by-play throughout the endless hours he’s at work and beg him to come home at warp speed! Then miraculously as soon as he walks in the door your child becomes the sweetest little angel to ever walk the earth and you look like a big, fat, lying, drama queen. Yep. That’s what happened to me today….
With Ryker getting the steroid injections yesterday, I was eager to see how his usual joint stiffness would be this morning when he got up. Not to worry, he hopped right out of bed like he had never had a problem. He started walking towards the potty like he hadn’t a care in the world… and that is where the tide turned. In my haste to see how his joints fared I forgot to bring a fresh pull-up with me. Sometimes he stays dry through the night, but more often than not he needs a new pull-up and sometimes a new set of jammy pants. As he made his way to the upstairs bathroom I informed him that we needed to use the potty downstairs because I didn’t have a pull-up.
ALL HELL BREAKS LOOSE
The kid doesn’t like his routine messed with… I get it. He obviously gets that from me but… come on! It’s the potty for crying out loud! I had to carry him kicking and screaming down the stairs (while 18 weeks pregnant) and then spend the next 5 minutes convincing him to sit on the potty. Needless to say the day continued to spiral out of control from this point forward…
He was moody and aggressive. The littlest thing would set him off crying and he wouldn’t be able to stop for 15 minutes despite my best efforts to bribe or distract him. At first I thought he might still have anesthesia in his system from yesterday; then, I was convinced he was just being a two-year-old. After he hit me a few times and then tried to bite me I chalked his extremely unusual behavior up to the steroids. That HAD to be it. No way did my sweet, fun-loving boy become a defiant naysayer overnight. Not to mention he was completely eating me out of house and home! The rheumatology nurse practitioner agreed with me later when she called to check on him. But honestly, it didn’t matter why he was acting that way…. I still didn’t know how to deal with it! Am I supposed to just give him a wide berth? be extra patient? or treat him like nothing is out of the ordinary and reprimand him for every single indiscretion? I spent the entire day trying to make an “action plan” and second-guessing every decision I made. This has pretty much been my “mommy life” for the past two months….. My baby is sick and I want to comfort him and let him do whatever makes him feel better…. but I also don’t want him to be a brat! He’s probably utterly confused because some days I’m extra lenient and other days I’m super strict. Today I had no patience at all which I always feel super guilty about when I’m laying in bed at night. Where do you draw the line? How do you know when they are acting out because they feel bad versus when they are just testing the limits? It is a conundrum I fear I will be facing for an inevitably long time…. Blek!
Anyway, by the time Justin got home I had passed my breaking point. We ate a quick dinner, I wished him luck, and then I escaped to the bath tub! Imagine my surprise when I return from the bath only to hear how happy he has been the whole time and how he asked to go to the potty. WHAT?! You have got to be freaking kidding me! I have done nothing but fight with that kid all day about going to the potty. Unbelievable!
I don’t understand it.
I probably never will.
Scientists should study it.
In the meantime, I’m going to use the explanation that the steroids had started to wear off by the time Justin got home and therefore Ryker’s mood swings had stabilized. That sounds plausible right??
We had our healthy, sweet, vibrant boy back for about two weeks. It’s been almost a year since we’ve seen that boy. In March of this year, we increased his methotrexate dose to hopefully help with some pain and stiffness he was having. Since then, he has been plagued by extreme fatigue and lack of appetite. Every day was a battle to get him to eat and he barely wanted to do anything except lay on the couch and watch his iPad. At the beginning of last month we decided enough was enough and we lowered his dose back down. That’s when it happened. For two weeks after lowering it, our boy had an insatiable appetite and resounding energy. He wasn’t in pain and he wasn’t having any joint swelling or stiffness. We were lulled into a false sense of security. I knew something was wrong on Halloween night. He had been looking forward to trick-or-treating for months, but after only ten houses, he asked to go home. I tried to ignore it. I tried to explain away the red flag that was waving boldly in front of my face; but, it’s been two weeks now and his complaints have only increased. It’s heartbreaking. I either have a boy who’s too tired to eat or play, or I have a boy who’s in pain and has trouble walking! How can those be my only two options?? This is the most maddening situation I’ve ever experienced. I don’t know what to do! I feel like I am just constantly evaluating him for anything that might be wrong instead of enjoying the precious moments I have with him in the present. Ugh. I give up.
Honestly, this week has been rough because both of my littles aren’t feeling well. BUT, there are so many things to be thankful for. I would say the kindness of others has been the best thing to happen to me this week. My JA warrior is the youth honoree for our local Arthritis Foundation Jingle Bell Run this year and we have been working hard to fundraise. People have been so generous! Especially people that I barely know! It has greatly surprised me how slight acquaintances have been so willing to donate and help out in any way they can. This cause is obviously very personal to me, and it warms my heart when people see that and are willing to offer their time and/or their money. Thank you everyone!
As a shameless plug: if you haven’t donated to our team and you would like to, please click on the link below 😊
Thank you for seeing my son so quickly after his onset of symptoms. Thank you for taking the time to answer all of my questions and ease my concerns. Thank you for being patient with my tears and gracefully handling my anger. Thank you for not tossing my medical knowledge aside and trusting my observations and conclusions. I don’t know how I would continue on this journey without a wonderful doctor like you. Thank you for everything you have done for us this far and, no offense, but I hope we can see you a little less frequently in the future.
Whew! I almost missed today because my little guy is having a bad flare. At the beginning of October we reduced his methotrexate to try to alleviate some of the side effects he was having. Within the past couple of weeks he’s started complaining of pain again and having stiffness in his joints. It is maddening! I honestly don’t know how I would survive without my fellow JA moms and my family and friends. Because I’m new to this whole online health advocacy thing, I don’t have very many pages/people that I follow religiously. Honestly I’m not even sure there are other JA-specific bloggers out there, but if there are, please send them my way! In the meantime, here are a few people I keep tabs on via Twitter and Facebook 🙂
Twitter: @HurtBlogger @patientchat @RacinForACure @iCANIreland @CureArthritis @ACRheum @CreakyJoints @ArthritisFdn
Facebook: Mariah’s Movers (page), Carson’s Crew (page), Arthritis Foundation Texas (page), TMJ/JIA parents (group), Juvenile Idiopathic Arthritis (group), Juvenile Arthritis Friends (group), Parents of Kids who have Juvenile Arthritis (group)