The weight of the world

I’ve rarely mentioned Juvenile Arthritis this past year. That’s how life with JA is. When it is under control you mostly forget it. If you don’t see it, it might just be an exaggerationbrought on by your fatigue, right?

She’s missed less school, spent less time at the doctor, and life is busy with normal stuff.

Her relative well-being means that I can finish my last prerequisite before applying to nursing school. So add to the craziness of the kids’ school schedule and soccer, the additional craziness of my driving across town to learn microbiology. I love it. I’m a lifelong learner.

And then you go for a  routine school paperwork pediatric check up. The excitement to see your doctor has you grinning in the waiting room.You can’t wait to tell her how we all miss her because we haven’t had to see her in ages.

I should have known better. It’s when I least expect it that I get thrown the curve balls that smack me in the face. As the doctor told me how concerned she was about Pea’s failure to gain weight, images of my little girl throwing down on some fried chicken (her favorite food in the whole wide world) kept flashing through my mind. She eats so much. What do you mean she hasn’t gained weight in over a year? 

And Pork Chop needs an X-ray for his “growing pains” that might not be growing pains? HUH? Siblings of JA kids are at higher risk of also having joint inflammation than other kids.  My dear friend and the cornerstone of my JA support system, Kim Poston Miller of Living with Juvenile Arthritis, has two children with JA.  I shouldn’t be surprised–but I still am.

And so is life when your child (maybe children) has an invisible autoimmune disease.  We are having tests done on both kids and meeting with a dietician to ensure that Pea is eating appropriately.  Food allergies limit what she can eat and her extreme pickiness limits it even further.  Oddly enough, it’s my meat and vegetable lover that is the one with the allergies and the weight gain issues.

I’ll smile and continue our school, homework, gym, soccer routine tomorrow because neither child had a clue what anything the doctor said meant. They got to see Dr Sue (whom they like to call Dr Seuss) and they had fun. We can make anything fun.

I’m the “fun mom” because life for a family affected by an invisible disease has some not so fun moments.
Tweet

So I will continue to share our highlights–especially on instagram and facebook–but know, too, that we have our lowlights.

Did you know that over 300k children are affected by Juvenile Arthritis in the United States? Do you know a family dealing with JA and the associated issues? If so, please let them know that I am always willing to lend an ear or share my experiences.  I was scared and felt so alone at the beginning of our arthritis journey. It doesn’t have to be that way because there are mothers that have walked the road before you willing to make it easier.