November 2013 hasn’t really been an easy month for us. To give you an idea, my miscarriage in October was just the pebble that preceded the avalanche. It has gotten worse since then. We have been in juvenile arthritis hell.
A good friend told me that the miscarriage was probably for the best because there has been so much on my plate since then that it would have been too difficult to handle. I will say that I completely see her point, however, losing my baby is never something I could classify as “for the best.” I would have made it work because it would be worth it.
I trudge on when things get difficult. I take it one fire at a time and douse the flames where I can.
Today, the Princess and I went to Nemours Childrens Hospital to see her Opthamologist. One of the risks associated with Juvenile Arthritis is uveitis, inflammation of the eye. JRA comes with a host of companion problems.
In the parking garage we walked by a smiling tween girl who was obviously undergoing chemo and had lost her hair. Since I can never tell what is going to pop out of Pea’s mouth, I hung back a little so that we wouldn’t be in earshot. She stared curiously but said nothing.
Then we shared an elevator with abald tween girl and again Pea was silent. I was pretty proud of her because I could see the confusion and interest in her eyes.
Leaving the appointment, where we actually had good news about the lack of inflammation in her eyes, we found ourselves walking behind a different tween girl, who was also bald.
There was no way she was containing it this time.
“Mommy, why does the girl with the cute pink shirt have no hair? Why are all the girls bald?” (Keep in mind, Pea’s long hair is pretty important to her.)
“They are sick and the medicine they have to take makes their hair fall out. They really need the medicine to get better so they have to still take it.”
“Well, you better make them some hats. It’s starting to get cold.”
I was very proud of her. She thought of their discomfort with the cold and immediately tasked me with knitting or crocheting hats for the girls.
Today reminded me that, we may have a difficult road but there are others on a much harder path than we are on. It does get hard but it also gets easier too. Those little girls who were smiling while going to or from an appointment are some strong little soldiers (as are their families.) We are all fighting the same war. All want the same thing, to be healthy and happy and have healthy and happy children.
Seeing other “sick” kids can teach kids how to put their own illness in perspective.
Alas, preschoolers have short memories.
Hours later, while eating dinner Pea, jumped up and exclaimed to her brother, “I forgot to tell you. I saw the funniest thing today. I saw these girls who HAD NO HAIR!” Pork Chop just looked confused.
It was a great time to remind her that princesses should always be kind and that laughing at the expense of others is not acceptable.
“Do you remember when you told me that you hopped on one leg all the way to the bathroom at school? You didn’t have Miss Martino carry you because the other kids call you a baby when you can’t walk. You hop because you don’t want them to laugh at you being carried. ”
“Yes, ma’am. (she makes yes ma’am sound so pitiful!) My leg was hurting.”
“How did it make you feel to have other people laugh at you because you couldn’t help not being able to walk.”
“So how do you think those little girls feel when someone laughs at them. They can’t help it that their hair fell out and they are sick. Just like you can’t help it when it hurts to walk.”
“Just remember how you feel next time you see someone different. Because sometimes you are the different one. Everyone is the different one at some point.”
It’s hard for her to being the different one sometimes. She is at least a full head shorter than most of the other preschoolers. She often gets mistaken for a toddler when she isn’t talking. Her food allergies often dictate that she is fed a different lunch than her classmates. It helps her when I point out my own differences. I have a beauty mark. Pork Chop has the cutest dimples…that he HATES because “other people don’t have holes in their face when they smile.)
We all have something that is different about us.
Sometimes she will forget. It is in Pea’s nature to observe and comment on other people’s appearance. I make it a point to use her own experiences to give her perspective when it comes to thinking about other people. But it isn’t only her that needs to be reminded of others.
It’s been a hard journey the last couple of months. This flare has been notably the worst one yet. We’ve had little rest, and I constantly worry about her pain that I can’t make go away, the rashes that she scratches bloody, and the temper tantrums that are the result. However, in comparison, her JA is a mild case. We haven’t had to resort to the harder drugs that are used to treat this autoimmune disease. For all intents and purposes, she looks fine every single day. I see it in people’s eye when they look at her. I see the she isn’t really that bad thoughts in the face of co-workers who see pictures of her smiling and playing when she isn’t in pain. JA is tricky like that. She can be mobile and active in the afternoon and writhing in pain the next morning. She doesn’t have a wheelchair or baldness giving visual proof of her condition. But glance up from her pretty little face and take a look at my haggard one and you might see a different story. Despite that, I can’t help but smile at the bald tweens and my long haired princess. They are smiling and laughing in the middle of their battle.