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.
Bonnie a.k.a. LadyBlogger says
Hang in there. Sometimes miscarriages happen simply because they happen, sometimes it could be due to stress, sometimes it’s because of something else. People never know what to say when it happens. They want to be supportive and say something…I have had seven miscarriages. Hang in there!
Bonnie a.k.a. LadyBlogger recently posted…BLOG HOP!!!!
Seven! I am so sorry. Time has helped. There are some days that I feel the loss more than others but shutting down just isn’t an option. I just try to focus on what I can control.
What a sweetie she is. It’s nice to read she is also aware of those around her, even though later she thought it was funny. She learned an important lesson from it though and it’s great she realizes that. I wish more people were more conscious of the words they say. Sometimes it is so hard to do and not one of us is perfect but we can certainly try.
Kim recently posted…Just Get Over It? Let’s Try Compassion Instead
Absolutely, Kim. She is still so little and will say the darnedest things so I make it a point to tie these types of lessons to something that she can relate to. I think it is very important to teach kids from a young age to be considerate of others. Because of her juvenile arthritis, she is going to encounter people that don’t understand what she is going through. She’ll need to learn how to navigate those situations.
Plus, she’s a “mean girl” by nature! It is difficult for me to handle because I was never one myself!
Robin @ Farewell, Stranger says
What a great perspective you have. Struggles are so tough, and it sounds like you’ve had your fair share. Here’s hoping things get a little better soon.
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Things are getting better :). I just have to ride the wave and eventually I get back to shore.
Oh, your princess has such a big heart… what a wonderful idea the hats are. I’m sorry you’ve been going through such a difficult time, and I hope that you were able to have a happy Thanksgiving.
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We had a great Thanksgiving. Thank you! Sometimes I just have to be reminded of the good things in my life.
Oh Herchel, I am so sad to hear about your miscarriage. It sounds like it has been a very tough time lately, but I love that quote. You show such strength with your attitude. And what a sweet girl you have to think about those other children. I just learned how to make a little hat myself, but I used the loom so I think that’s the easy way. I can’t knit to save my life.
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Those are hard lessons to learn and teach. I love her hat idea!
Greta recently posted…Happy Thanksgiving from the Warm Snugglies. #iPPP
I am so glad her next appointment there isn’t until after Christmas! She wants me to make unicorn hats for us to wear at the Jingle Bell Run in a couple of weeks and I have no idea where I will find the time to crochet!
Kerstin @ Auer Life says
I’m so sorry about your miscarriage. I’m sure your friend meant well when she said it was for the better, but I’m with you on feeling that it’s never for the better to lose a baby.
You little girl is so cute and what a sweet sentiment with the hats! You should crochet them and get her to decorate them with felt flowers 🙂
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Thank you Kerstin! She would love it. That is a great idea. She gets mad that she can’t “needle” the hats herself. By making the felt flowers, she contributes too 🙂
I’m so sorry about your miscarriage. I think sometimes it is hard for people to know what to say, and they speak without really thinking.
The story about your little princess and the girls with cancer is heartwarming…Pea has a good heart! That is so sweet that she wants you to make them hats. And kids sometimes say things without truly thinking as well…it’s our job as parents to guide. I love the way you handled it.
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Kim Miller says
You are doing a great job as a parent. My heart was warmed and broken, all within the same post, but you handled it with such understanding and grace. Proud of both of you!
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[email protected] Mom says
What a sweet thought she had about making hats for the girls .
I am sorry about all of the challenges you have faced recently. I hope that things get easier soon. I think you are right, we just have to take one thing at a time when things like that happen and eventually better days will come again.
[email protected] Mom recently posted…Through His Eyes
Thank you, Kim. It will get better and the kind words definitely are appreciated.
That is too sweet how Pea thought to make the girls hats because it’s getting cold outside. Sorry to hear about your miscarriage 🙁 stay strong! I find that praying helps during the toughest of times.
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Prayer does help, Gracielle. I also have two energetic kids that keep me busy. Thank you for stopping by today. 🙂
The Dose of Reality says
My heart melted when she wanted you to start making hats. That is really the sweetest thing EVER. Aw! I love the way you talked to her about the fact that everyone is the different one sometime. That is just so true and it’s something that we all need to be reminded of no matter how old we are. –Lisa
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Thanks, Lisa! She even grabbed yarn and wrapped it around a knitting needle because that is how she “needles” a hat. I’ve got to say though that if I don’t make the exact same hat for her that I make to be given away, there’s a 75% chance she won’t find “the right girl” to give it too and will want to keep it.
Sandy Sandmeyer says
Out of the mouths of babes. Princess has a sweet heart. How cool that she thought that you needed to make those girls hats. Take pictures when shes delivered them. I wanna see!
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I will! Now I just have to crochet them 🙂
Sandy Sandmeyer says
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