Surprisingly, I often get questions from parents to kids with CRPS. I never expected this to be a demographic of mine, but here we are. The conversation typically starts out with a parent thanking me. Thanking me because I was someone their child could relate to. They also tend to ask me lots of questions. All of the questions fall under the same one concept: How can I help my child?. Woah. That is quite the question. I don’t know anyone’s exact life, but my own. However, I do know quite a bit about support and what that should look like. I’ve had 5 years to fine tune it and know what I need- thanks to a family willing to listen and change their perspective and reactions. So for parents out there, here’s how you can help a child who is suffering from within:
As I said earlier, I have always had a supportive family. Does that mean it’s been perfect with no issues? Hell no! We are all human and no one wrote us a manual on how to handle life. But, I can say my family was always willing to listen. For the purpose of this blog- I will be solely talking about my mom. For those reading, this would be for any parent or guardian you have. I can say my mom has always been incredible. She focuses on her kids and what we need. So when her and I were told that I had Complex Regional Pain Syndrome, we were BOTH speechless. I remember my mom taking quite the beating on the ride home while I screamed at her to get me more help. Now, she didn’t deserve that. She didn’t deserve a lot of the times when I screamed about the pain. But I can’t go back and I know she doesn’t hold it against me.
So how did she do it? How did she support me for so many years without ever knowing what it was like to have such horrific never-ending pain? She listened. That’s the key to it all-parents. Listen. We are trying to figure out what our body is doing to us. When we can put anything in words, you need to listen. We will tell you what we need without always spelling it out. Let me give you an example:
Story Time With Alexis
When I was just diagnosed, I was a senior in high school. One night, I was in pain that would not stop. It felt like it was escalating and still makes my heart race while thinking about it. I stood in the living room with my mom on the couch screaming. I don’t think I was screaming at her directly, I think it was just so much emotion from so much terror. Finally, my mom interrupted me and said “what do you need me to do?”.
I responded quickly and loudly…. HELP ME.
Imagine having your kid scream that to you. My mom looked me in the eyes, said okay. And within 24 hours I was seeing a new doctor, getting slips ready for pt and ot, and on homebound for a month of school. My homebound teacher would be someone I trusted and it was just so I could reset.
So what do you takeaway from that? My mom can get shit done? Yes. But also that she listened. The minute I said help me, she did everything she could control. Do you hear that parents? You can only do what you can control. You cannot control the pain and burning that is happening to your child. I will never know what it feels like to be on that side of it. To watch your child slowly moving into the shadows and becoming almost unrecognizable. But you will want to do everything. Sometimes all you can do is be there and listen. A lot of the time, that is all you can do. All they may need for a while is you just acknowledging every day that they put up a good fight. Family and friends tend to forget that every single day is a fight- so it means the world to point it out. Turning your back on your child because you don’t believe in a clinical disease might as well be a signature on your child’s death certificate. The minute you start ignoring or pushing away the truth of their disease, you will destroy them.
We won’t always be able to hold ourselves up. I needed my family to hold me up for 5 years. Just over the past couple of months I feel like I’ve begun walking on my own again. So I will say this once. If you are reading this and you are a parent who makes your child feel as if it is a made up disease. I am completely disgusted by you. You need to educate yourself. They don’t need to prove anything. Be a parent and show the real unconditional love.
Who would’ve thought my answer had been so simple. Many of you will read this and think: well I already listen so that wasn’t helpful. I am telling you now you aren’t even listening to me. You need to understand as much as humanly possible in order to care for your child. My mom asks me questions all the time. Questions like “what does it feel like?”, “what do you see helping the most”, or even “are there any more resources I can help you find?”. The fight will ultimately have to be done by your child with CRPS. But that doesn’t mean you can’t be in their corner every step of the way. And every time they trip and fall- you help them up and simply tell them they can do it.
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