When my daughter was diagnosed with an autoimmune disease when she was in the second grade, it was jolting. We had been managing her life threatening food allergies since she was an infant so adding something else on top of that ignited concern over how hard this would get for her.
We managed it and the life adjustments we had to make just became part of our everyday routine. No matter how hard life gets you figure out a way to make it work. It becomes second nature and you accept it. The waves of chronic pain come and go – we appreciate the times where her body isn’t attacking itself and we do the best we can to get through the hard times. Honestly, it becomes such a part of the process that we don’t even think of it anymore. It’s not a negative, it’s our way of life.
She has had an exceptional past year of minimal flare ups. We truly appreciate those times since we know they are temporary. I was especially thankful for the lack of major flare ups since she just started middle school.
She had hives and red splotches all over her face and arms when she got home from school last Wednesday. As I asked her about them they multiplied before my eyes. Initially we thought it was an allergic reaction. The hives turned into oozing blisters that she has never had before – this was something different. This was something new. We haven’t had anything new come up for many years.
My daughter is twelve years old and has this genuinely amazing ability to shine despite how hard it gets. She is full of awesomeness and isn’t a complainer. She is truly a sweet, kind and happy kid. She isn’t naturally selfish and because of that I think she lacks a personality trait that makes her obsess over herself or her looks. She would rather act a little crazy, silly and not take things seriously than be the girl who is checking herself out in the bathroom every passing period.
I don’t know how I got so lucky – she inspires me and has honestly helped me get through bed rest with her constant optimism. Sure, she has her moments of damaging my calm, trying to push limits and epic freaking eye rolls over chores – she is still a normal tween in most ways.
But, she is my shining ball of hope in this world and I hope her health hurdles won’t change her. With such a visible disability that has the ability to cause her so much pain she doesn’t even want to get out of bed I can understand if she became angry, resentful or bitter.
She embraces the fact that everyone is different in their own way, but I wasn’t sure how she would react this time. Being different is difficult at any age, but especially in middle school. Adding in social platforms like Instagram for teens and some of the potential drama that can come from it I wasn’t sure what she would do.
We always take pictures of her flare ups so we can document them. That may sound strange, but when you have a special needs child who has chronic illness record keeping is important. After I took a photo of her arm she asked if she could share it on Instagram. She said she didn’t want to hide what she really goes through and she wanted people to understand. She wasn’t looking for pity or sympathy… she just wanted to be real. I was so proud of her.
After a major flare up we usually spend many hours with her immunologist (and often other doctors) running blood work, xrays and trying to figure out what is happening. This was not easy with my modified bed rest limitations and my husband having to juggle his work from the lobby on his laptop – but, we made it happen. It isn’t an easy process and she get’s a lot of blood drawn at one time. I’ve always tried to make our long days at the hospital fun – as fun as it can be considering the circumstances. She shared some of it with her friends on Instagram and had a very upbeat personality about it. Again, I was very proud.
The night before Mother’s Day she insisted on baking me some goodies. No matter how terrible she feels she is still this thoughtful little human being who muscles through it and thinks of others. She was emotionally in a really good place – but there was something weighing on her. She was dealing with moments of sadness with how her face and skin looked. She was frustrated at how her body reacts. We talked about all of that and it was heart wrenching.
She decided to take a selfie and share it with her friends. My daughter doesn’t want to hide what she goes through and she doesn’t want to be ashamed of how she looks. She doesn’t see anything wrong with it and she knows she cannot control how others may see her and doesn’t care to. Proud doesn’t begin to explain how I felt in that moment.
She wrote -
Life is a struggle every day but nothing can keep me down. Despite my health I can still be happy with who I am and that’s just how I think the world should work.#carefree #beyourself #lovewhoyouare
I’m sure she will have many low moments with this. I’m sure I will be there to dry her tears over the years when she can’t focus on the positive. I’m sure she will go through phases of anger, bitterness or resentment…
But, right now I can take comfort knowing that she can have this perspective at such a young age. Right now I can know that she will be okay. Right now is what matters most and we will face those battles together in the future.
Right now, I hope each and every one of you can #lovewhoyouare and if not…
Live, laugh and ninja kick those obstacles out of the way until you do.
About Leila DontSpeakWhinese
Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of five awesome kids. They ninja kick through life together. Oh and she is a total jackass.