Today is really special for me. I met Kim P Miller last year when I interviewed her about her book Living with Juvenile Arthritis: A Parent's Guide. We share a passion for raising awareness about juvenile arthritis, coming at it from different perspectives. I as an adult with JA, she is a parent of two boys who have JA. We stayed in touch and a few months ago, I wrote a guest post on her blog Living with Juvenile Arthritis. Today, I'm honored to host her on The Seated View. She's writing about the highs and lows of being a parent of a child with JA and giving away a copy of her truly excellent book.
The act of parenting any child is a lot like a roller coaster. There are high points and low points, there are ups and downs, there are crazy twists and turns that you didn’t expect. You can guess what the ride might be like, looking at it from the outside, but you never really know what it is until you’ve actually gotten on and taken a spin. What it looks like from the line, may be nothing like what you thought it would be after you got on.
Being a parent of a child with Juvenile Arthritis is no different. Like any other parent, you don’t know what you are in for, until you are in it, neck deep. You get on that same roller coaster, with its ups downs, but the chronic illness component makes this ride just a bit more terrifying, with just an extra twist. In my mind its a lot like riding Disney’s Space Mountain, you know it’s a roller coaster, but you can’t see what’s ahead of you, since the whole thing happens in the dark.
When someone asks me what is the worst thing about parenting a child with JA, or what is the biggest low, I have to say it’s the “being in the dark.” There is no set protocol for every case of JA or related autoimmune disease. There are no guarantees that treatments will work for your child. There is no magic formula for taking away the pain, or making sure your child doesn’t suffer. There are just a lot of what ifs, and maybes. There are so many unknowns. Your child relies on you to make all the “right” decisions for them, but the trick is there are no “right” answers, and the stakes are very, very high. Talk about pressure! For me, that was, and still is the biggest low, wanting to fix things, but not knowing if I can…not knowing if I am making the “right” decisions for the best possible outcome in my child’s life, or even worse, making the “wrong” decision for their care.
My personal low was making the wrong treatment decision. As always, the doctor put all the options out there for me, and I needed to make a choice. I went with her recommendation of the least “serious” medication with the fewest side effects and complications, even though my gut told me differently. I should have listened. My son developed a severe, life threatening allergic reaction to the drug- a drug that some others in our family were allergic to, but within a drug class that my son had previously had no issues. I made what I thought was the best possible decision, but it wasn’t the right choice for him. Nearly two weeks in the hospital and four months out of school had me beating myself up about that decision on a daily basis. This was definitely a low point.
But then things changed.
Just like a real rollercoaster, things started moving up, and going in a different direction. I started trusting my instincts and research, and after that incident, the doctors started listening more. My son learned to speak up for himself and find HIS voice. We became more of a team, with me, my son, and the doctors all working together. Although the way up was slow, we were moving in the right direction, and that’s when it dawned on me: in order to be here, we had to come from there. Each piece, good or bad, fit together to get us where we are now, and where we are now has several high points.
Although I would never wish JA on any child, it has given my children gifts. Through experiencing some of the pain and sadness that comes with the disease, they have come to appreciate “good” times, pain-free times, and happy times far more than other “normal” children their age. They have learned to make the most out of the times they are well, to seize the moment and not take much for granted, because they know that things can change in an instant. Because they have lived through the lows, they also know that there can be, and there will be another high point around the corner. Sometimes, you just have to be patient and wait for it.
Most people don’t truly understand this until middle-age, or a mid life crisis. JA has put my kids way ahead of the game. They know they can count on me, because I have been there, day in, day out, and any time of the night too. They don’t have to guess if I will be there when the chips are down, because we have been there and done that already. There is definitely a type of peace that goes along with that knowledge, and that peace is another gift.
People often ask me how I can say that having JA has been a good thing for my family. They wonder how I can find a high point in parenting children with such special needs. It’s not the disease I am grateful for (I would be happy to step off that ride) but the impact that having this disease has made on my children is another story. The way I have watched them, and us as a family overcome these challenges has been amazing. Much like the phoenix rises out of the ashes, JA has been the fire allowing them to come out on the other side stronger and more beautiful than ever before. Being able to witness this transformation, and seeing that all they have gone through is not pointless, that is my greatest “high point.”
Parenting isn’t easy, and parenting a child with any type of special needs is even tougher. We may be on the super-coaster instead of the kiddie version, but that doesn’t mean we can’t hang on tight and still enjoy the ride armed with the knowledge that every “down” is eventually followed by an “up”.
To enter the giveaway for a copy of Kim's book, Living with Juvenile Arthritis: A Parent's Guide, leave a comment below by midnight ET on Thursday, January 30, 2014. Winner will be announced on January 31.