Recently, my daughter fell off of a cliff. Not literally, but metaphorically. She got very sick, very quickly, and we didn’t know why and we didn’t know how to help her. So we jumped off the cliff with her so she wouldn’t be alone. We finally got a diagnosis; Juvenile Idiopathic Arthritis, also known as Juvenile Rheumatoid Arthritis. I have written here and there, bits and pieces during the last several months. I may publish them, I may not. They are raw and personal, and even editing them brings up emotions that I’m having difficulty keeping tucked in. However, as a writer, one of the things that motivates me is connection. In sharing our stories, we allow others to connect with us, and that is the whole purpose of humanity in my humble opinion.
Yesterday I hit a wall. In the wake of Madeline’s diagnosis, I’ve been stoically strong, like the prow of a ship, the Statue of Liberty, Joan of Arc on the stake in her final moments.
That may be a bit of an exaggeration.
I hadn’t cried though, and I was determined to stay positive so that everyone else would as well.
We have a diagnosis, and we have a doctor we trust, and we have a plan in place. After almost two months of not knowing what was wrong with my child, I finally knew. It was a relief, the knowing. I was adjusting to our new normal, and demanding that everyone else do the same.
Until yesterday, when Madeline was exhausted and couldn’t move off of the couch. She wasn’t in pain, no more than normal anyway, she was just fatigued, but it was what pulled the plug on the calm that I had been trying so hard to maintain.
I don’t want this to be my new normal. I want my old normal back.
I want my kid back. My kid that drove her teacher crazy because she couldn’t stop moving. My kid who ran and jumped, climbed and did headstands. My kid who never complained because she wasn’t in pain.
I want my kid back and I want my life back.
So, I called my sister.
We’ve always teased her about not being sensitive. She’s…just very frank. Blunt. To the point. Says it like it is.
That’s why I called her. When I blubbered snot all over my phone, she responded exactly how I expected her to.
“Yeah. That really sucks. All of it. It’s okay for you to be upset. Maybe you should stop hiding on the porch and let Madeline see you angry. That way she will know it’s okay for her to be angry, too.”
My sister didn’t try to make me feel better. She didn’t tell me that everything happens for a reason, there’s a silver lining, treatments are amazing now, Madeline is going to be fine, at least she doesn’t have cancer.
She just echoed back what I was feeling, and in that way simply validated me. She let me know it was acceptable. She let me own it, and that was what I needed. Which is exactly why I called her.
The kindness of my beautiful friends and family has kept me afloat. In the onslaught of positive messages though, I find myself wanting to defend the severity of her diagnosis. I want people to understand how upsetting this is for us. I want people to understand how devastating it is to realize that your child has a disease that means her immune system is trying to destroy her body. I want people to understand how terrified I am of having to give my child a weekly injection of a medication that is so dangerous I have to wear gloves and dispose of it in a bio hazard bag; and that if we’re lucky, it will work and we will keep doing it for the next 3-5 years. I want people to understand that every single part of her life and our lives, has been affected by this. I don’t want to hear that everything is going to be alright. It’s not alright.
It might be eventually, but it sure as hell isn’t now.
In their defense, they are just doing what we all do when someone we love is hurting; they are trying to ease my pain, and take my hurting away.
I’ve also realized that when my friends go through challenging situations, I do the exact same thing. I try to make them feel better. That’s what people do.
One of my friends recently interviewed for a job that she desperately wanted, but unfortunately did not get. In an attempt to comfort her, I explained how I was dating someone many, many lifetimes ago and he just absolutely refused to love me. I didn’t love him either, but that wasn’t the point. I was devastated when we broke up (more because I was alone again than because I actually missed him), but met my husband two weeks later, and I was free to fall in love with him because I didn’t get what I thought I wanted.
In an unnecessarily long story, I essentially told her that everything happens for a reason. An expression that I despise. I had the best intentions when I said it, but what I should have said was, “I’m sorry. That sucks. I can see why you’re so disappointed. I’m here if you need someone to complain to about it.”
I didn’t mean to make her disappointment less important by telling her that better things were headed her way. I believe they are, because she’s fantastic, but all she really needed was for me to be the someone who echoed back what she was feeling; disappointment. Then, when she was ready to move on, she needed someone to move on with her in support. Maybe then I could have told her the story, when she was ready to start the process of looking at not getting her dream job in a positive light. Until then though, I should have kept my mouth shut.
No one can make me feel better right now. Only time can do that, time and the continued love of my family and friends. Whether or not they say the “right” thing, they are my community, my people, and I need them. They can say whatever the hell they want, as long as they stick by us in support. I am humbled and filled with overwhelming gratitude for every kind sentiment they give me out of love.
But I will forever need the blunt responses of my sister. She is younger than me by more than a few years, but I am discovering more and more that she has become a wise woman, and I have quite a lot to learn from her.
In the darkest moments of my life, she is who I call. She is in fact, Empathetically Yours.