I am honored to be able to provide interviews and information to families who are caretakers of children living with chronic illnesses. While most of our children suffer from physical illness, there is always a mental health component, for them and for us, that accompanies long term illness and care. 

In this first blog post I want to introduce Kim Poston Miller. I met Kim online through the Cure JM (Juvenile Myositis) Facebook page. (I have a child with JM.)  In addition to her many talents, Kim is also the mother of two children living with Juvenile Arthritis and has written a very good book based on her research and experience called Living with Juvenile Arthritis: A Parent’s Guide. (Full disclosure: Kim asked me to write a brief piece about Coping with Illness that appears in the book.) While our children have differing diagnoses, they are both treated by rheumatologists, often using the same medications. More importantly though, we share some common experiences as mothers of children living with a chronic disease.

I am aware that some of us will not have the experience that Kim talks about later on, of seeing our kids improve, or of having times of improvement. Nonetheless, I do think there is valuable information here.

I asked Kim to share her Top Tips for parents of newly diagnosed children. I think her words apply to all sorts of newly diagnosed diseases. I also asked her to look back over her 9 years of parenting kids with JA and outline a few things she wished she’d known in the beginning.  The following are her (excerpted) answers Top Tips for parents of the newly diagnosed:

  1. Seek out support ASAP. This is really key. Although friends and family are definitely important, most really won’t understand the gravity of the situation, or how difficult it is to cope with a chronic illness. (For example, systemic JA can be fatal, but we often hear “at least it’s not cancer.”) Participating in counseling sessions with a professional can be helpful to learn coping skills or to deal with the feelings of grief or being overwhelmed. But talking to other parents (either in person through support groups or online through forums specific to your child’s illness) whose children are similarly diagnosed, will provide insight and support that cannot even be found through your doctor or health care professional. This is often the place where you can find people that “get it” and can help you feel sane again. From tips and tricks to just being a sympathetic ear, tapping into a community of like individuals is extremely important. 
  2. Trust your gut! If something doesn’t sit right with you, trust your gut. Lots of times parents of the newly diagnosed feel like they don’t have enough knowledge or experience to object to diagnosis, treatments or treatment plans. You know your child better than anyone. You observe more of their behaviors, actions and reactions than any specialist. Educate yourself. Ask questions and raise objections if you have any. You cannot work well with your healthcare provider unless you do this. (Suzanne’s emphasis) It will make you, your child and the provider more comfortable with the course of action that is ultimately chosen because there will be a higher level of trust if communication is open and the healthcare provider has more information from you! 
  3. Keep a journal/log of observable effects of medications (positive and negative), activity levels, symptoms etc. and use this as an objective source of information for your provider. Don’t be afraid to participate. 
  4. Look for the “silver linings.” [While not all of our kids will get “better,”] try not to frame this challenge in your life as all bad. Although none of us would choose this for our children, viewing every single thing about the disease and its processes as negative can be bad for everyone’s mental health. Find the good and focus on that. For example, I never thought I would EVER be able to administer injections- I have now done it hundreds of times, and recognize that it has forced me to grow as a person, and do things that I didn’t think that I could. Once, when my son was in a wheelchair (temporarily), we went to a botanical garden. He was surprised to find out how different things looked from his seated view. It also helped him to develop more awareness and empathy for others as he now understands more of the daily challenges that people with limited mobility face. Finding these “silver linings” helps give purpose to the challenges we face, and helps us to keep a healthier, more positive attitude in general.

3 Things I wish I had known:

  1. Doctors aren’t always right. Don’t get me wrong- this isn’t an excuse to throw out the doctor’s advice. It’s important to remember that medicine is just as much an art as it is a science. If something doesn’t feel right to you about your child’s treatment plan, don’t be afraid to discuss it (and why you have those concerns) with your doctor. Sometimes there are other alternatives available. Don’t be afraid to get a second opinion if necessary, or to change doctors if the trust and rapport isn’t there. 
  2. The journey with chronic illness is more like a roller coaster ride than a road trip. With something like the flu, there is a beginning, a middle, and an end. Chronic illness isn’t like a road you go down, where the path is straight  and there is a light at the end of the tunnel. There is a lot of insecurity, twists and turns, ups and downs. It’s a lot more like a roller coaster ride where things are fine one minute, and definitely not the next. The good news is that for every “down” an “up” can be right around the corner, and that setbacks aren’t usually permanent. While it can be discouraging to be doing well and then see your child lose ground, it is also comforting to know that things can turn around. Focus on getting back to a “good” place and know you can, because you have been there before.
  3. Everyone is different. While talking to other parents whose children have the same issues as yours, its still important to recognize that every child is unique, and especially with rheumatology, everyone responds differently! The miracle drug, or diet changes for my child, may not be what works for yours. This doesn’t mean that if a lot of people are finding success with a particular treatment plan (or problems with a certain drug) that you shouldn’t bring it up with your doctor (it may be just the thing!) it just means that you should recognize that this may not be true for your child, and don’t give up trying to find the right fit. I have two children with JA, and they have extremely different symptoms, treatment plans, and responses! 

Lastly, I want to add that you need to be kind to yourself. Lose the guilt, and don’t go down the rabbit hole of what-ifs. There’s no instruction manual, and we do the best that we can. Don’t give up, and keep fighting for your child, but recognize that this effects you and your whole family, not just the person with the disease. Take care of yourself mentally and physically so you can continue to be there for your child and be the best parent you can be with the hand that you have been dealt. Anything else wastes time and energy that could better be spent on your child!

Kim Poston Miller can be found online at: http://www.livingwithjuvenilearthritis.com

AuthorSuzanne Edison