So, my husband and I have spent the last year watching our daughter go from a beautiful, energetic, athletic, friendly child to an introverted, recluse to somewhere in between. She is clearly on her way to getting back to herself but we do worry about any permanent damage to her psyche.
We have learned a lot of things this past year and not just about skin. We learned how much we can do with very little sleep. I learned that having a clean house isn’t the most important thing.
We learned that we have some of the best friends on the face of the earth. Friends who constantly checked in, friends who checked in occasionally, friends who have so little time themselves but managed to send texts or emails or phone calls when they had a moment. These friends pulled me out of such darkness and I will forever be grateful. I have heard about so many people who are going through this alone and I can’t imagine how they do that. We also learned that there are a few people who aren’t such great friends. These people didn’t really surprise us but confirmed what we already knew. We also learned that my daughter has the most amazing classmates and friends. They never teased her. They protected her and cared about her and showed intense compassion at such a young age. The world could learn so much from this group of children.
I learned that sitting on the couch with my daughter EVERY day for hours was more important than my job, my hobbies, spending time with my friends, my body, my housework, her schoolwork, etc. Some people will say that I should still take care of myself because that will help me take better care of her. That is bullshit. At the time the most important thing was sitting on that couch, holding my daughter and making her feel better. There is nothing more important than making your child feel secure and loved when they are are struggling. If I had to do it over again I would still choose to sit on the couch with her.
We learned to listen to my daughter. She has a voice but since she is a child, we tend not to hear her. After hearing how horrible this process is, from the adults suffering through tsw, I realized that we needed to pay attention to what she was saying. There is no way to know what someone else is feeling unless you listen to them. Once we started listening to her more, she started to explain things in more detail. It really helped us to understand the pain and discomfort she was in.
We learned that we have to speak up for our child, since her voice is ignored. We had to make sure that her school did everything that was needed to help her get through this. We were lucky that her school environment was wonderfully supportive. Her teachers, school nurse, principal and school psychologist wanted to help her. We had to guide them by explaining what she needed.
I learned that no matter what happens after this is over, I will never take doctors at their word again. This horrible experience has taught me that trusting my gut is what I should do and what I should have always done. I didn’t listen to my instincts because I wanted to believe that my daughter’s doctors could heal her, even though I knew they were going down the wrong road. I don’t hate doctors. I do believe that they sometimes take the easy way out by handing out prescriptions without giving any other options a thought. They need to open their minds and accept that sometimes they need to look at alternative methods. Hopefully one day more doctors will accept that Topical Steroid Addiction does exist.
I am sure I learned more but I am too tired to remember! Good luck to anyone who is going through this. Don’t give up hope. It will get better. No matter what, anything is better than the roller coaster of Topical Steroid use.