Parenting Through the Ups and Downs

This post is written from the perspetive of a parent with a child in the CHYP community.

My 17-year-old daughter is a senior in high school, and she has been managing CRPS for several years. Fortunately, it is not the same as it was for the first couple of years when we couldn’t figure out why she was having pain, and her condition continued to get worse. She battled CRPS hard, and with the help of a multi-disciplinary team, went from her low of being in a wheelchair to a high of dancing on two high school dance teams and living a fuller life. So I am very grateful for how far she has come. But it is still a daily battle, and will likely continue to be for the foreseeable future. That is not always easy to accept and manage.

Chronic pain is something that emerges in different ways over time and depends on the level of mental and physical stress being faced on any given day. My daughter dances a lot, and as someone who has CRPS and scoliosis, she has to be very careful with her back and her knee, which are her particular chronic pain areas. But the mind-body connection is very strong, so in times of stress, the knee and back pain can be exacerbated even when she has not been dancing.

Further, CRPS impacts other parts of the body as well, and any medical issue or physical injury leads to more pain and longer periods of pain for her than for most people. It is a constant challenge to decide how to react to an episode of pain. It changes its area of the body, its presentation and its intensity, and each time we need to quickly figure out how best to react.

There are obviously some big impacts for her, and it also affects me significantly as her mother. For her, it’s a continual battle to stay positive and to not focus on how unfair it is that she needs to overcome this pain while others her age do not. It’s a commitment to listen to her body, communicate what she’s feeling, and do her mindfulness exercises, while also seeing her physical therapist or other members of her care team to address a given episode. It is easy for her to feel very scared, remembering the trauma of her first few years with CRPS and worrying if it’s coming back as strong as it was then and whether it will ultimately resolve.

As a mother, it is difficult to decide how much and in what way to address a new episode of pain. How do we differentiate pain caused by CRPS from a separate injury or illness? Is it appendicitis this time, even if it wasn’t the last time she had severe abdominal pain? What if this time we don’t seek medical care and her appendix actually bursts? Is there an acute injury to the knee or back or is it a pain episode caused by CRPS? No one has the answer. I can easily be triggered by my own trauma of what we went through together, but I also have an important role in helping her to be positive and communicating strength and our ability to overcome the latest episode.

I have learned a few important lessons as a parent of a teen with CRPS that help me stay strong and positive, which is the best thing I can do for her. First, I need to stay in the present and try not to dwell on the past. Practicing mindfulness and exercising every day help me to take care of myself and focus on what is happening now. I make sure to plan time doing things she enjoys, even when she is less able to be active.

Second, I need to give myself a break for times that I get emotional or am not sure what to do. There is no guidebook on how to manage this condition or these situations, and all I can do is the best I can with the best intentions. Sometimes I get it right, and sometimes I fall apart. Either way, I am doing my best.

Third, help my daughter to maintain perspective, and see all that she is achieving and not just what the hurdles are – to remember how far she has come and how amazing she is. And finally, be there to validate and support her in her feelings, because a big part of the experience of CRPS is not feeling believed, which is very damaging.

My daughter is the strongest, most determined person, and I’m so proud of her and inspired by her. I have to focus on the big picture of her dreams and goals, and try not to get hung up on all of the obstacles along the way. It’s not always easy, but it is amazing.