A New Normal

We all have hopes and dreams for the future, particularly for our kids. We long to see them happy, healthy, and ready to conquer the world. As a parent I have endeavored to guide my children and give them the tools they need to face life head on.

I have two remarkable daughters. My girls came to live with me at the ages of 11 and 8, and I was given the amazing privilege of adopting them. For their own privacy I have chosen to give them pseudonyms for my blog posts. My oldest is now 17 and she is Percy because she has an amazing spirit of perseverance. My youngest is 13 and she is Miss B because she is one of the bravest people I know.

Right now we are facing an unexpected battle. Just recently Miss B was diagnosed with Juvenile Primary Fibromyalgia Syndrome (JPFS). I, myself, have lived with both Lupus and Fibromyalgia for the last 12 years, however I didn't even know children could have fibromyalgia until a month ago. It is one thing to deal with chronic pain as an adult, its a whole different game when it's your child who is suffering.

In the last few weeks I have spent a lot of time scouring the internet and books looking for information about JPFS. There are plenty of sites about the symptoms and diagnosis, but very little about day to day living. I need to know how to help my child cope with unrelenting pain. I need advice from other parents on when to push and when to step back. I thought I knew what pain was living with chronic conditions myself, but I have quickly come to realize that what my daughter is facing is much more severe than anything I've dealt with.

There hasn't been a day since the beginning of January when Miss B hasn't lived in pain. It has become her ever constant companion. She loves basketball but had to quit the team. Sitting in class or crossing the school campus have become difficult chores. When school is over she frequently comes home and goes straight to bed. Along with pain that starts in her back and radiates out to her limbs, she also has an ever present migraine level headache. Too much light or sound stimulation can cause episodes of dizziness and vomiting. Mornings are difficult, some days she wakes up crying because the pain is so intense. She has not been able to go to school 5 days in a row since January. (A year ago she had perfect attendance and the year before that she missed only one day of school). Her senses of sight, sound, smell, and touch seem to be on a 24/7 overload. We have had to buy darkening curtains for both our living room and her bedroom. She spends lots of time alone in her bedroom because she needs a quiet dark place. It kills me as a mom because I'm unable to provide any comfort. The lightest pat on the back or rub on the arm evokes a sharp, painful reaction. I just have to say, when hugs hurt, something is just plain wrong.

In January we started the long procession of doctor's visits. We started with our primary care doctor who initially thought the pain was a result of Miss B not liking school. I was quite mad when I left the doctor's office that day. Although I'd be the first to tell you that Miss B doesn't exactly love school, I can also tell you I know my daughter. What we're dealing with is independent of Miss B's lack of enthusiasm for school. We then had a couple of visits with an orthopedist. He was the first to suggest the JPFS, and he referred us to a chronic pain specialist. Last week we finally had our appointment with the chronic pain doctor. He confirmed the diagnosis of JPFS and agreed that her case was severe. The bad news was that he is retiring, and he would be unable to treat her. Because of his impending retirement he wouldn't even prescribe medicine because he would be unable to monitor the effects. 

So now we have a diagnosis, but we still, after three months, have no treatment. I know from my own experience that once pain is allowed to get out of control it is very hard to reign it back in. I fear for Miss B that even once we find another doctor and start a treatment plan it will still be some time before the pain can be tamed.

That brings us to the real problem of the moment. Here we are three almost four months after I realized we had a serious problem and there is still no treatment for Miss B. Do you know how frustrating that is? I spent several hours on the phone this past week trying to locate a pediatric rheumatologist that would treat JPFS and take Miss B's insurance. (She also needs a neurologist for the migraines). After many, many phone calls I found one. You read that right, one. He's in a neighboring state and we will have to apply through a Shriner's Hospital to get an appointment maybe in June. That would be three more months with no treatment plan. In the middle of the phone calls I just stopped and cried for a few moments. I never knew getting my child the help she needed would be so hard.

I don't think I have felt more alone in my life than I have the last couple of weeks. I feel like the lone warrior standing on the battle field trying to project my child. Her protector, her advocate, her cheerleader. I love Miss B with all my heart. I tell her that she and her sister are the very breathes I breathe. These last few days I have felt so helpless, so inadequate. I can't relieve her pain and I can't get her the help she so desperately needs.

In January my pastor was talking to me about crisis. He said after a crisis comes a new normal. You take what's happened and you weave the experience into your life. Things won't be the same, but you will find a "New Normal." Lately I have felt like each day is a new normal for our family. We are trying to adjust. Priorities have changed. Routines have changed. Life has changed. 

One thing I don't want to lose sight of as we walk this journey is HOPE. I chose the title Hope Matters for this blog because, well, it does matter. My goal for myself and for our family is to remember to love, to laugh, and to hope. My mother has always quoted Jeremiah 29:11 to me. For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Now I hold on to the same promise for my own daughter.