I have not written in a long time. Not because the RND went away or anything miraculous like that, but simply because other families needs arise and prove to be their own distraction. My husband became very sick and after three years, he was able to get a liver transplant. He had NASH, non-alcoholic liver killing disease. In the midst of dealing with his declining health, we continued to pursue doctors for Zoralei's needs. She had 5 surgeries in the last five years for endometriosis and continues to exercise and destress to treat her RND.
The endometriosis has proven to be its own heartache, in part because I have always remained unsure of how much the RND plays into it. Surgeries that normally would have stripped the pain entirely for others, still leave Zoralei with pain. The pain is not as intense, but it is never gone. The last surgery she lost an ovary, which had the endometriosis and yet still she struggles. The reality is her pain receptors react so quickly.
She still avoids tight sleeves because her arm hurts so much, but otherwise, she has chosen to live her life to the fullest. She has been able to do everything any normal teen can (except right after her surgery recoveries). As pain receptors have lessened their intensity, her compassion has increased, so much so that when she leaves for college in the fall, she will be pursuing a degree as a physical therapist. I think it is incredible that one of the hardest experiences of her life, the hospitalization for RND has actually become one of the greatest blessings of her life. Not only did it help her to learn to control her RND, but it also directed her future. I never would have seen that. She was so determined not to walk a mile to school, to avoid bike riding, or any kind of exercise prior to this experience years ago and now she will use those tools to help other people. It is incredible to see the woman that she has become in all of this.
I know Zoralei is aware of her RND, but though it has shaped who she is becoming, it has not defined who she is. I honestly believe that is the secret to success with this. When Zoralei stopped defining her life in terms of the pain she was experiencing from endometriosis and subsequently, the RND, she started to find herself. Thriving was not possible until she could see herself beyond the pain. She had to figure out if she was RND or if she was something more? She had to learn to see something greater in herself.
As she begins her next chapter of her life and we adjust to life without her, as a parent, I cannot help but worry: what if there is a flare-up (we will be several states away)? What do I need to do to make sure she has the tools she needs? What doctors do we need to set up down there? What if her roommates are not compassionate when it is a particularly rough day? These are just a few of the questions that flit through my mind. Then there are the feelings of relief that I come along with the questions. Relief that she is doing so much better, relief that she can go to college as I was very worried she would not be able to do so. Even relief that life might be a bit simpler without dealing with so many medical issues all the time (and along with this comes some guilt for feeling that way). RND is an emotional roller coaster ride for a parent, no matter what phase your child is approaching, but one thing is certain is that Zoralei will succeed.
Zoralei has mastered it. She hit rock bottom and for a while there, the pain was so bad that I really believed she might not come out of her depression ever. We didn't give up. We found a program that could help her. We asked questions. We moved forward. It is so important to never stop moving forward. As the parents, we have to help them move forward when the pain is crippling. As long as we move forward, they can define themselves beyond their RND. They can become all that we dreamed for them. They can become a light of triumph to all those around them.
